Britta's Boob Blog

Just for Love show

2015-02-15T09:53:00.000-05:00

Here is my post (with photos!) of the Just For Love benefit show.

Email me!

2012-02-07T07:47:00.000-05:00

Hi everyone!

I don't know why I didn't think of this sooner... I've created an email address for this blog, so that you can write to me in private if you want to. Sometimes people want to talk about cancer-related stuff without doing so in a public blog, and without having to give their email address in a public blog, either!

SO, you can email me at BrittaBBlog@yahoo.com at any time.

I hope you're having a beautiful day.

An Afternoon in Cancer-land

2012-01-12T12:22:00.002-05:00

I had my 6-month oncology check-up a week ago, but I've been putting off writing about it. I don't know why. But now I'm stuck at home on a snow day...A is sick and still in bed. I had to cancel my trapeze lesson due to pain/spasms in my lower back, but I can't even get to my chiropractor's office because that would mean shoveling the driveway, which my back can't handle. So here I am stuck at home, and I might as well write, right?

Last Thursday was my 6-month check-up, and it was with a new oncologist, since my previous one is no longer practicing in the cancer center I go to. It was also the 2-year anniversary of my lumpectomy. It would have been an emotional, stressful day for me just because of all of that, but in addition, someone I love (who I won't name, out of respect for their privacy) had an appointment elsewhere in the building at the same exact time, because they had 5 out of 7 symptoms of a scary kind of cancer. So my fear for my loved one's well-being pretty much eclipsed my fear for myself, and I was so distracted because of it. We made plans to meet in the main lobby when we were both done with our appointments.

My new oncologist, Dr. J, spent 45 minutes with me because it was our first visit - I was used to these appointments being only 15 or 20 minutes. We didn't hit it off too well, I'm sorry to say. Then again, I totally got off on the wrong foot with my first oncologist, too, and then our connection improved greatly...so perhaps I just need to be patient and give it a chance with Dr. J. What stressed me out was that Dr. J wanted me to have what felt like a gazillion tests and procedures, not because she was really worried about my health, was the impression I got, but simply because that's how she does it with all of her patients. I've been feeling really great for months, trying my best to eat well, sleep well, exercising (there's always room for improvement, but I've been walking fairly regularly), de-stressing, taking all of my anti-cancer supplements along with the Tamoxifen, and continuing to educate myself on/engage in activism against environmental toxins. I haven't been worried about the possibility of a recurrence. I felt like I was happily living far away from cancer-land. But these stupid cancer check-ups are a reminder that I will never get away from cancer-land... I will need regular check-ups of some kind for the rest of my life. Dr. J wanted me to schedule a bone density scan, a pelvic ultrasound (to assess the cause of my irregular/heavy menstrual bleeding - which I'm sure is a Tamoxifen side effect, not a third cancer, geez), and have more blood work, a flu shot, a mammogram, and consider genetic testing. I only agreed to half of that, declining the last 3 items. Dr. J is super bothered by my refusal of mammograms, telling me that mammograms really aren't optional. But it's my body, and I'm not willing to have that much radiation.*

The appointment dragged on and on, and ended with her telling me she wants to see me again in four months, because she's still getting to know me. I was dismayed, for I had been expecting to not need a check up with her for at least 6 months, maybe a year...considering I'm now over 2 years past diagnosis. Having my oncology appointments instead increase in frequency - along with the increase in tests and procedures - makes me feel cranky, too immersed in cancer-land once again.

Once I got my clothes back on, scheduled all of the stupid tests and procedures, and had my 3 vials of blood drawn, I practically ran to the main lobby to find my loved one. They were there, waiting to go into the lab for blood work and an X-ray. Within minutes, they were whisked into the lab, and I had to sit there for a full hour, so scared, waiting to hear whether or not it was cancer. Then, they came running out, gleefully telling me it was a virus, not cancer. Relief washed over me. Never before have I been so thrilled by someone being sick with a virus!

There are so many things I hate about cancer; I hate having the fear of it lurking about. My logical brain knew that it was very, very unlikely that that person I love had cancer... but that's what I had thought about myself, too, and twice now I've had the experience of being told, "Oh, it's probably nothing," and then finding out, BOOM, it's CANCER. That has skewed everything for me and it's a constant challenge to maintain perspective and logic and not let the fear win. Even young, healthy, fit people get cancer. Even cancer survivors who have been given an excellent prognosis and have a low risk of recurrence and feel certain that cancer is a thing of the past can end up dying from the cancer a year later (see my previous post). We really just never know and there are no certainties when it comes to cancer...or anything in life, really. Do I sound like a broken record when I say that all we can do is take life one day at a time? Sometimes it's one hour at a time, one minute at a time, one breath at a time. Inhale, exhale, repeat.

*By refusing annual mammograms, I'm not making a fear-based, uneducated decision. I have thought long and hard about it, and have read a lot about mammography and other breast cancer detection methods, and have talked with many people about it, including medical professionals. And I'm choosing annual breast MRIs. My surgeon, who is also the director of the Breast Care Program at a National Cancer Institute Designated Cancer Center, has approved that choice. She told me, "You know that if I felt strongly about your need for annual mammograms, I would beg you to do it, like I did with radiation therapy." And that right there is good enough for me! If something shows up on the MRI, of course I will get the recommended follow-up ultrasound, mammogram, biopsy, etc. And I'll continue having at least 3 Clinical Breast Exams (CBE) per year, from my oncologist, surgeon, and gynecologist, and possibly thermograms on occasion. I will consider having an occasional mammogram. I will consider having mammograms on a more regular basis when I'm older and my breast density has decreased. I have very dense breasts, like most young women, and I have a report from the radiologist who interpreted my mammogram a couple years ago that clearly says that my very dense breast tissue decreases the sensitivity of mammography. On mammograms/X-rays, dense breast tissue shows up as white, as does cancer, so it's like...what's that expression...trying to find a polar bear in a snowstorm. I see no point in annually exposing my breasts TO A CARCINOGEN (radiation) for the next SIXTY FIVE YEARS (ish), when A) it's really hard to detect cancer via mammogram, given my breast density; and B) the more mammograms I have, the more my risk of cancer increases. I've already had a shitload of radiation to my breasts (the radiation therapy, I mean). And we're all exposed to so many carcinogens on a daily basis, most of which we're not even aware of, and cannot avoid. Thus, if there are carcinogens I can avoid, I will avoid them.

Diana & Lily

2012-01-07T21:20:00.001-05:00

In June 2009, I accepted a summer babysitting gig, for a sweet baby, just a few hours a week. The family lived in New York but had a summer home here in New England, close to where I lived. I had a really good feeling about the baby's mom, Diana, when I met her...and baby Lily was an absolute doll. I wore her on my chest in a baby carrier, and we strolled in the summer warmth and light, over the covered bridge, and on the rail trail walking path. The greenery was so lush around us. And when the sun went down, I lay the big white cloth out on the bed, swaddled sweet Lily in it the way Diana told me she liked, and rocked her in my arms.

After just a couple weeks of babysitting for Lily, I showed up one afternoon as scheduled, and knocked, and no one came to the door. I knocked and knocked, and tried calling Diana's cell phone, but she wasn't there. I waited 20 minutes, and then I went home to check my email and see if there was any message from her. And yes, she had emailed to tell me that the "flu" she'd had for a few days was more likely pneumonia, and she was in the hospital. Two days later, another email... she told me she had leukemia, and was returning home to NY for chemo. She closed with "I so enjoyed meeting you; your sunniness will stay with me as I start this journey," and I was so shocked and sad, because she had seemed so healthy and vibrant to me. I was angry that cancer was stealing her and Lily away just as we had been getting to know each other. Diana and her husband's wedding anniversary was in a little over a week and I was supposed to babysit that night so they could go out and celebrate. Instead, she was spending that time in the hospital.

Three months later, Diana emailed me again to update me, saying how she was feeling so much better now, and that despite needing a bone marrow transplant soon, she was "completely certain that [she]'ll
get on the other side of this, get a huge tattoo that says 'Survivor,' and get on with life." I wrote back with well wishes for continued healing... and a month later, had my breast lump biopsied, and was shocked to be given a cancer diagnosis of my own.

Six months passed. I frequently wondered how Diana was doing, but we hadn't emailed...and then one day, the week I started radiation, I got the strangest voice mail from her - it was just 3 minutes of her having a conversation with someone, probably her husband. It sounded to me like she had sat on her phone and called me accidentally. I could hear Lily making happy baby noises, and banging some toys together, and I smiled. I emailed Diana to tell her I'd received that probably-accidental voice mail, and asked how she was doing, and told her about my cancer. Isn't it so strange, I mused, that she and I both had cancer when we met each other and had no idea. And we were both in our 30s and so healthy!

Diana wrote back and was just as shocked and sad about my cancer as I had been about hers, but was glad to hear that I was recovering well and had such a good prognosis. "I think my prognosis is excellent too...," she said. "...at this point it's all recovery." In that email, she shared with me her thoughts about cancer, and ended with:

"I had a vision, last time I visited the doctor (at an entire hospital for cancer patients), that cancer is a certain kind of demanding spiritual path, and everyone who has it has been chosen for it. It's easy for me to see it that way now that I'm done with treatment and recovering. But it's an interesting vision.

much love
Diana"

That was a year and 8 months ago, and it was the last time I heard from her. This past week, I was thinking about her, and made a mental note to email her soon and see how she's doing now...hoping we could share stories of how well we're recovering. This morning, I woke up to an mass email from her husband, a "reminder" (although I never received the first notice) about Diana's upcoming memorial service. She died last month. I didn't know. I had been picturing her happy and healthy and enjoying time with the now-toddler Lily. Hearing of her death was such a blow....she was a vibrant and kind-hearted woman.

Diana and I signed our emails to each other with variations of "much love," even though we'd only had about 3 weeks together, because there is a kinship between those of us who have been face to face with the cancer monster. We both had undetected cancer when we met each other. We both were treated at the same hospital. We both had excellent prognoses... so why am I so healthy, and why is she DEAD? I hate cancer. Cancer is an ugly serial killer that does not discriminate... it takes down parents of little children, and little children themselves; people of all ages, all races, all professions, all parts of the world. When I was 19, cancer took away my friend Cory, a single mother in her 30s, leaving behind her 7-year-old son with autism. Cancer stole Cory when "Chicken Soup for the Survivor's Soul" was literally open on the nightstand next to her hospital bed, just like it stole Diana, a young woman with a baby daughter, who was ready to "get her 'Survivor' tattoo and move on." Cancer doesn't give a damn, it takes who it wants to, and having an excellent prognosis, and "complete certainty" that you'll fully recover, is no protection. It makes me wish that cancer was a corporeal being so I could bash its kneecaps in with a hammer.

May you rest in peace, Diana. I wish we had had more time together.

Here is an article about Diana, titled, "Diana Colbert, Wife of Author Charles Bock, Dies." I met her husband when I began babysitting for Lily, but didn't see/talk with him much, so I don't know him well. I wish him and Lily well and my deepest sympathies are with them.

Happy New Year!

2012-01-02T15:34:00.010-05:00

Several of my family members write New Year's Goals (note: not resolutions), and one of my family members even writes extensive lists of New Year's Goals in over a dozen categories - which works really well for him and is really important to him. I used to write New Year's Goals as well, due mostly to family pressure to do so, but I stopped years ago. For a few years I felt guilty for not doing it, assuming that some personal flaw made me averse to goal-setting. Now I'm secure with who I am and what my life is about - I'm process-oriented, not goal-oriented!

Instead of setting goals that can be checked off a list when accomplished, I set life-long intentions for how I want to live:

Always put love first.
Keep growing and learning.
Maintain an awareness of my place in the interdependent web of life.
Be honest and real.
Support and strengthen my health.
Support and strengthen the health of the Earth.
Try my best.
Increase sisterhood and women's freedom in whatever ways I can.
Do what I can to make the world a better place for children.
Say "Thank you" and "I love you" on a regular basis and never take my blessings for granted.

These are my life-long intentions that I try to live by. Of course, I don't always succeed in that...not only do I of course make mistakes and poor decisions like all humans do, but I know those intentions are rather lofty. It would be impossible to follow them to a T at every moment. :) But I try! These intentions are not just for 2012, nor are they ever things I can check off as "done." They can be approached in many ways. My problem with goal-setting is that it feels too concrete, and doesn't leave room for the ways in which life is constantly changing - often in ways outside of our personal control. If you set a goal to do X, and then decide that doing X is not right for you, are you a "failure" because you didn't "accomplish the goal"? I spent 15 years working non-stop/often full time with young children, and then I burnt out, and quit childcare as my 30th birthday present to myself. Had I set a goal of "Be a teacher" or whatever, I would have had to count that a "failure." But really, my life's mission from the time I was a teenager was to "do what I can to make the world a better place for children." There are many, many ways of doing that, which don't necessarily have to involve being the direct caregiver for children on a daily basis. After I quit childcare [or rather, seriously reduced my hours - I must admit that I still spend time with kids because I can't not :)], I wrote a grant application that resulted in scholarship money for disadvantaged kids to take circus classes. Still a way of following my stated intentions!!

In the fall of 2009, I was all prepared to facilitate a Girl's Circle for a group of 10- and 11-year-old girls at a local library. I had gone through the training, purchased the curriculum and made changes to it to suit the group's needs, gathered materials, arranged my work schedule, etc. I had already facilitated an 8-week Circle and it had gone really well, and this was to be a continuation of it. Two girls were already signed up and as excited as I was. Then... you know where this story is going, right?.... I was diagnosed with breast cancer. And my surgery date was set for 2 days before the Girls Circle was scheduled to start. I had to cancel the whole thing. Had I set a goal of "Facilitate Girls Circle at the library in Fall 2009/Winter 2010," I would have had to say I failed to meet that goal. But I didn't fail at all. I succeeded by surviving cancer, both physically and mentally, and continuing to live a happy, healthy life. Facilitating a Girls Circle would have been a wonderful expression of my lifelong intention to increase sisterhood and women's freedom, but life through me a giant curveball and I had to find new ways. During the 2 years since then, I haven't facilitated any Girls Circles (maybe I still will?), but I have instead increased sisterhood and women's freedom by loaning money to businesswomen in developing countries (through Kiva), volunteering at a fundraising event for research on breast cancer and the environment, helping plan and implement a local fundraiser for two women in my community who are undergoing cancer treatments, volunteering at an event put on by the local Women's Freedom Center, and engaging in online activism in a variety of ways.

I don't set goals that are destinations I must arrive at, because I have NO IDEA what's coming up ahead in my path. Thus, I set intentions for how to travel the path. These are intentions I can try to live by no matter what happens in my life. When I was in college, I set a bunch of now-seemingly-arbitrary goals, like learn to play the fiddle by the time I'm 35, live in a house by the ocean, become a mother, go to Paris again. MAYBE I WILL, MAYBE I WON'T, but I'm taking life one day at a time and defining success so differently now. My life's intentions are ones that can be practiced whether one is a hardworking, married CEO and bestselling author and mother of 5, or a solitary person confined to a hospital bed...because it's not about what you accomplish, it's about who you are.

When I was in the midst of breast cancer treatments, I had bouts of depression because I felt so disconnected from the rest of the world/my "normal life" and unable to "do" anything. Had my goals been as specific as "facilitate a 12-week Girls Circle by Spring of 2010," yeah, I would have "failed." But even during cancer treatments, I could try to follow my life's intentions... I was filled to the brim with love and gratitude for all of my amazingly loving and supportive friends and family, and I was certainly growing and learning (haha, whether I wanted to or not! My mom refers to that 6-month period as my "cancer semester"), and while I was frustrated to not be able to do more/do what I wanted to do in the realm of helping women, I could at the very least write supportive messages to other breast cancer patients on the message boards, blog about my experiences in hopes that my words would be helpful to others, and sign up for a clinical trial that would result in data that would improve breast cancer treatments for future women. And, I comforted myself by trying to remember that while part of me felt useless/isolated/self-centered by not being able to do anything other than be a cancer patient, reality was that I NEEDED to focus on my own personal healing in order to be at all helpful to other women in the future! You know, that whole "put on your own oxygen mask first" thing.

So, if any of you reading this failed to accomplish last year's resolutions or goals, or are feeling apprehensive about the ones you've set this year, or guilty for not setting any at all, I say, don't sweat it! :) Be you. Be the best YOU that you can be, knowing that there are infinite ways of approaching that....including by setting specific goals and objectives if you really want to. If you include "Always keep learning and growing" as one of your goals, then you can't EVER fail, right?? Failing to meet some goal or objective you set is certainly something you learn and grow from, so, you're really always succeeding. :)

What are your New Year's traditions or rituals? Do you set goals or resolutions or intentions of some kind? What works for you? I know that some of my family members really get a lot out of goal-setting, so I hope this post hasn't sounded too anti-goals in general! It's just not MY thing, and that's okay! :)

Happy 2012!!!

Other Blogs

2011-12-31T15:50:00.002-05:00

Breast Cancer? But Doctor...I Hate Pink! is a great blog you should read. Here is a recent entry I got a good chuckle out of:

What Doctors Should Do

Living Downstream

2011-12-31T12:21:00.003-05:00

My girlfriend, A, got me the Living Downstream DVD for Christmas!! I am sooooo excited! Check it out here - http://www.livingdownstream.com/. It's an amazing documentary of biologist/author/cancer survivor Dr. Sandra Steingraber's book by the same title. Steingraber writes articles and books about science in general, but specifically chemicals and the environmental links to cancer. Her writing is beautiful and poetic, even when she's writing about ugly topics, and I highly highly recommend all of her work. You can search for her on YouTube, too, to see clips from her lectures and speeches.

Take action against chemical pollution!

2011-12-31T12:20:00.003-05:00

[I wrote this over the summer and forgot to post it... OOPS!]

Over the past several months, I have been reading several books about chemical pollution. It's a topic I knew next to nothing about until I actively started digging into it, and now I'm wondering what the hell I've gotten myself into. I'm learning a lot of scary things - for example, that all pressure-treated wood used before 2004, on common structures like decks and playgrounds, is loaded with the carcinogen arsenic, the substance that the EPA deems most dangerous of all (thanks to Sandra Steingraber's book, "Raising Elijah"). It's difficult. Once you KNOW about the carcinogenic, endocrine-disrupting, neurotoxic chemicals that are lurking in your canned soup, sunscreen, porch, pajamas, lightbulbs, breakfast toast, frying pan, shampoo, mattress, arts and crafts box, shower curtain, tuna sandwich, cash register receipts, dollar bills, and car, you can't NOT know.

Many (mainstream) cancer prevention sources deny that there is a link between chemical exposures and cancer. Those that acknowledge the link usually just advise you to educate yourself so you can make better choices, such as eating organic food and using natural body care products and household cleaners. It is IMPOSSIBLE for a person to completely eliminate her exposure to toxic chemicals simply by making better choices. This is true for the following reasons:

1) There are over 80,000 chemicals in use today. As Steingraber says in "Raising Elijah," only 200 of them have been tested under the Toxic Substances Control Act of 1976. To detoxify your house and belongings as much as possible, you would need nearly unlimited time and money, to research all of the products that contain toxins, and find and purchase their (often very expensive) alternatives. Examples of common, every day products that contain toxins or are likely to:

- flourescent lightbulbs (mercury)
- mattresses
- vinyl shower curtains (PVC)
- non-organic cotton anything (pesticides)
- make-up (numerous, unknown chemicals, because cosmetics are not regulated)
- non-organic produce (pesticides)
- non-organic dairy (rGBH growth hormones, antibiotics)
- non-stick cookware (teflon/perflourinated compounds)
- dry-cleaned clothes (perchloroethyline)
- plastic children's toys (BPA)
- paper money (BPA)
- cash register receipts (BPA)
- plastic containers and water bottles (BPA)
- canned foods (BPA)
- the interior of new cars
- flame-retardant items, such as pajamas (bromine)
- tuna (mercury)
- wooden decks or playgrounds (arsenic)
- soap (triclosan)
- pedicures (phthalates)
- hair straightening treatments at the salon (formaldehyde)

And there are tons more things that I'm not even aware of, of course, because even though I've read about 7 books about toxic chemicals so far, there's way too much to learn and remember! It's not realistic to expect that anyone has the time/money/resources to avoid ALL of those things...

2) Studies have found 200+ chemicals in the umbilical cord blood of newborns. Choosing organic produce and cleaning with baking soda and vinegar totally can not make up for the fact that we're contaminated FROM BIRTH! This is because...

3) We are all exposed to numerous chemicals against our will, without our knowledge, without our consent, and without any way of preventing it. Chemicals are in the air, water, soil, and food - to differing degrees in different locations, of course... but there's nowhere on Earth where they are NOT, and none of us can live in a bubble. Even if our personal homes are as toxin-free as possible, the moment we step outside, we're confronted with chemicals.

This last point has become clear to me over the months as I've spent a lot of time in other people's homes, as a babysitter and petsitter/housesitter. Just as I can't control my exposure to the numerous and unknown chemicals lurking in the air, I often can't control what I'm exposed to at other people's houses. If I was crazy enough to say, "Sorry, I can't housesit for you because you have Teflon pans, a Glade plug-in air freshener, dishwasher detergent with nasty chemicals, and a sofa that's probably still off-gassing something bad," or to refuse dinner party invitations because the menu might include pesticide-contaminated food, I wouldn't have any work or money or friends! Sometimes, it's a matter between choosing to keep the chemicals away from yourself, and maintaining positive relationships with other people, and this shouldn't have to be a choice we make. A 9-year-old girl I babysit for tries to do many nice things for me when I'm at her house: offers me special treats from her EasyBake oven, paints my nails, lets me swim in her pool, teaches me tricks on the playground, and shares her sunblock. My internal reaction is, ack! Artificial flavoring and high fructose corn syrup! Phthalates! Chlorine! Arsenic! Parabens! At first, I tried to politely decline some of these things, and if pressed for a reason, I'd casually say something about being allergic to the chemicals in it. But one day, after I had caved and let her paint my nails with her slightly-better nail polish from the local health food store, she wanted me to take it off with nail polish remover, and I said in what I thought was a casual voice, "No thanks, I'm worried it will - " and she blurted out, "You're scared of EVERYTHING!"

That stopped me in my tracks. I had become one of Those People, those paranoid, bubble-dwelling, party-pooper killjoys. How do you maintain a balance between trying your best to keep yourself safe from chemicals, and maintaining positive relationships with the people you care about?? I don't want to be so anal and obsessive about chemical exposures that I can't enjoy social situations or be a good guest in a person's home. I want to be able to say "Thank you!" when someone offers me a snack, instead of "Oh no, chemicals!" It's certainly not that 9-year-old's fault that there are chemicals lurking in the snacks and nail polish, and I certainly don't fault her parents, either, for buying/having those items in the home, because like I said in 1), chemicals are ubiquitous and not possible to be eliminated or avoided solely through consumer choice. I'm sure there are carcinogenic substances in my home, too! I try my best to buy organic, natural products, but who's to know, really? The cosmetics industry is entirely unregulated. Any company can write "ALL NATURAL!" on its bottle and then put in whatever chemicals it wants to. It is the government's responsibility to REGULATE and BAN dangerous chemicals as necessary, and it is industry's responsibility to put the health of the Earth and its inhabitants before profits.

I was pissed off at the government and chemical industry for leaving me in such a quandary. On the one hand, if I say "okay" to the nail polish, snacks, pool, playground, and sunblock, and all of the chemicals they involve, I'm knowingly increasing my risk of a cancer recurrence. (One might argue that those exposures are so miniscule they don't count, but they really do all add up, and if there are multiple exposures we have no control over, shouldn't we at least say no to the exposures that we CAN?) On the other hand, if I keep saying "no" to everything this little girl offers me, she, one of the kindest, most thoughtful kids I know, is going to be sad and take it personally. This is wrong and unfair.

This girl's awesome parents are conscious of avoiding chemical exposures as much as possible, too, I know - her mom wryly told me that the spray sunblock (i.e. with the chemicals) is the only kind she can use, because her daughter won't stand still long enough to fully apply the cream kind (i.e. organic), so it's a toss-up between which cancer you're risking - skin cancer from no sunblock, or other cancer from the carcinogens in the sunblock?? This is ridiculous, and an example of how impossible it is for us individuals to avoid cancer/exposure to dangerous, carcinogenic chemicals all on our own. WE NEED the government's help. It shouldn't be up to us to spend an hour in a grocery aisle as we try to decipher the ingredients to figure out which products won't give us cancer - food should be safe to eat! I shouldn't have to say no to a child who wants to paint my nails and share her sunblock - products that go on the body should be safe to use! I shouldn't have to worry that the wooden structures she's climbing all over on the playground have arsenic in them!

What we can do is support the Safe Chemicals Act of 2011, which was introduced by Senator Frank Lautenberg. You can read about it at the Safer Chemicals, Healthy Families website here. It's a great website with lots of info. I sent my two Senators several hand-written note cards, asking them to co-sponsor the Safe Chemicals Act... And one of them did! :) (Not just because I asked him to, of course!)

You and I are simply human beings doing the best we can to stay healthy and safe. But the weight should not all be on us. What difference does it make if there are no pesticides on my (or your) one pint of strawberries in the fridge, when the farm industry continues to use pesticides and herbicides so heavily that there is no body of water in which the weed-killer Atrazine cannot be found? Let's make it stop!!!

Just say NO

2011-11-20T20:06:00.003-05:00

Here is an article in the Huffington Post that reports on the dangers of the full-body X-ray scanners being used in airports today. For several months now, we've been told, oh, no worries, the scanners are safe... radiation exposure is so minimal it's nothing to be concerned about. New studies are showing otherwise. They could be causing between 6 and 100 people per year to be diagnosed with cancer.

When I flew in August, I opted out and asked for the pat-down instead. Not surprisingly, I was - as far as I could tell - the only person in the huge line who said no to the scanner. It was a little embarrassing to be singled out, when I had to stand there next to the scanner while an employee hollered "PAT DOWN ON LINE 3!" (or whatever) so that the woman who did the pat downs knew to come over to me. She took me off to the side (I had the option of going to a separate room, but it didn't seem worth the hassle), and she was very, very polite and respectful the whole time. She made eye contact and explained everything she was going to do before she did it. She told me probably 3 times that she had to touch my breasts with the backs of her hands. She was clearly trying very hard to be kind about it, knowing that people really hate having pat-downs. The pat-down was no big deal to me, once I was over the mild embarrassment of knowing everyone was staring at me, the only one who said no to the scanner that they were all just going through with no hesitation. I wasn't upset to have this woman touching my clothed body with her gloved hands, even when she had to touch my breasts. I was very glad to have that instead of having more radiation put into my body. And after having spent 6 months going through breast cancer treatment, during which multiple strangers were doing things like sticking needles and wires into my naked breast, having this woman touch my clothed breasts with the backs of her gloved hands was NOTHING.

What I'm saying is, I highly encourage EVERYONE - especially those of you who fly frequently - to opt for the pat-down instead of going through the scanner. It's not fun to have a stranger touching your body, I know, but the way strangers have to touch your body to treat you for cancer is much worse. For me, the only embarrassing part was, like I said, being the only person saying no to the scanner and feeling singled out. But this won't be an issue if more and more of us start saying no. And speak up, if you can - say, "I won't go through the scanner. Radiation causes cancer." Other people will hear you, and maybe someone else will listen and follow your lead.

What do you do when a nightmare comes true?

2011-10-12T12:13:00.005-04:00

I wrote the following on August 15, and forgot about it until now:

"...I started worrying about cancer lurking in me in places no one would think to look. And last night when I went to sleep, I had a horrible nightmare about being diagnosed with cancer again, going through treatment all over again, and then cutting off 'cancer-prone' bits of flesh all over my body because I had read on the Internet that's what you had to do to prevent a recurrence. It was such a yucky dream."

I can't believe my nightmare actually came true. I mean, it's common for cancer survivors to occasionally have nightmares about being diagnosed with cancer again... that's part of being a cancer survivor. Typically, this kind of anxiety is best dealt with through something like meditation and chocolate, you know? But WTF, my nightmare came TRUE less than two months later! So was it really my intuition, telling me to get that mole check? It led to a melanoma diagnosis, and now every 3 months or 6 months (jury's still out) for at least a couple of years, I have to have skin checks...which will most likely lead to, just like in my nightmare, the dermatologist "cutting off cancer-prone bits of flesh," i.e. moles.

I don't know what to do about this. In general, I'm not anxiety-prone. I've always had a pretty good head on my shoulders, and weigh risks appropriately. I take rational precautions, as opposed to being too fearful or too cavalier. But now... it's going to take a lot of mental strength to not turn into a worrywart hypochondriac. How do I come to terms with the fact that despite being young, healthy, physically fit, etc., I've been diagnosed with two different cancers? I've always been a happy, optimistic person, in general. But right now I'm having a hard time trusting my body or trusting the universe, and I have this crazy urge to have every possible body part and internal organ biopsied or scanned. When I start worrying about some aspect of my health, I don't know how to calm myself down, because I really can't believe, "Oh, it's nothing!" I've never had a benign biopsy.

I'm behind with work and sleep and doing a poor job keeping in touch with friends. There's so much to do, and yet, I feel like spending all day reading the Tao te Ching, which is all about how to be more at peace with the uncertainties of life and life however it is.

Conflicted

2011-10-11T13:04:00.003-04:00

I'm having a hard time with the fact that there were two different types of cancer in my 32-year-old body. This means that I now have to be hyper-vigilant about TWO cancers for the rest of my life. I will need to take whatever measures I can to attempt to prevent a recurrence of either one, and I will need to get regular skin checks and breast exams of various modalities, for the rest of my life. I'm feeling overwhelmed by this.

I'm feeling quite discouraged by the fact that I was diagnosed with a second cancer despite having spent the past 2 years adopting an anti-cancer diet and lifestyle. I've been taking lots of anti-cancer supplements, eating lots of anti-cancer foods, avoiding sugar, de-stressing, etc. Now I'm torn between two mindsets - part of me wants to say SCREW IT, it clearly doesn't work anyway, so why bother?, and eat all the damn ice cream sundaes I want. The other part of me thinks, I'm obviously not following the anti-cancer rules ENOUGH and need to do even more - e.g. maybe cut out dairy, be even MORE strict about no sugar, meditate daily, etc. The problem is that following all of the anti-cancer rules to a T is nearly impossible, and trying to do so stresses me out... and paradoxically, it makes things worse. Dr. David Servan-Schrieber made clear in his book, Anti-Cancer, that your immune system is strongest when there is joy and passion in your life and you're "living a life worth living." So if I stressed myself out by trying to follow the anti-cancer diet and lifestyle rules to a T, I'd be missing the point. I need to find a balance, of course.

The thing about melanoma is that it's much more preventable than breast cancer is. It's really interesting that following my treatment for breast cancer, I became obsessed with learning about the environmental links to breast cancer and advocating for the elimination/regulation of toxic chemicals, and then was diagnosed with a second cancer that, as far as I can tell, has very little to do with environmental toxins. Melanoma risk can be drastically reduced by decreasing one's exposure to UV sun rays. That's pretty clear cut... I've already started buying new sunblocks and researching products such as sun protective clothing (50+ SPF) and laundry detergent that makes your clothing more resistant to the sun. I have a bad feeling that I could go overboard with my attempts at preventing melanoma recurrence, to make up for the fact that there's so little I can do (relatively speaking) to prevent the breast cancer from returning. So, friends, please don't let me turn into a sun-phobic vampire, okay?

Double Cancer

2011-10-06T14:15:00.003-04:00

This is how it all happened…

Two years ago, September 2009, I had a mole that worried me, right under my arm pit. Freaked that I had cancer, I made an appointment for a physical, mainly so I could ask for a referral to a dermatologist to get that mole checked out. At my physical, I was surprised when the doctor found a lump in my breast, and recommended that I get THAT checked out. So, I got both the mole and the breast lump checked…the mole turned out to be no big deal, but SURPRISE! The breast lump was cancer.

After half a year of breast cancer treatments, in September 2010, I went back to the dermatologist for my first annual full-body mole scan. I looked at the mole I had been worried about, which now looked so silly and benign next to the surgical scar on my breast right next to it. “Isn’t it strange,” I mused to the dermatologist, “that I came in here thinking I had a cancerous mole, when actually, the cancer was a couple inches over to the left, in my breast?” We were both happy that I was healthy and well.

Fast forward a year to September 2011, when I went back for my second annual full-body mole scan. This time, she found a different mole that looked suspicious to her, and she shaved it off to be analyzed.

I received a letter in the mail Monday evening, saying “The results of your biopsy show concerning abnormal pathology. Please call ASAP.” It was past business hours, so I couldn’t do anything until the morning. I was scared. Waiting to find out whether or not you have cancer is almost worse than knowing you have cancer. To me, the adjective “concerning” in front of the words “abnormal pathology” seemed like codespeak for "cancer." I couldn’t eat or work or focus on anything, and I just wanted to fall asleep fast. I spent a while debating whether to take my very last Ativan (anti-anxiety pill). I had been given a very small Ativan prescription while experiencing anxiety during radiation, but I had saved the last pill “for emergencies.” I figured this qualified, and I also figured, what the hell, if it turns out I do have cancer again, I’m sure I can get more Ativan pills NO PROBLEM. Ha. I took the stupid pill and zonked out at 9:30 PM. I had horrible dreams about my body decaying until it was as porous as a sponge.

First thing in the morning, I didn’t call the dermatologist, I went straight to her office. When I introduced myself at the receptionist’s window, she immediately ushered me into a room, and that’s when I had the oh, shit feeling. And yup, the doctor came in and told me: malignant melanoma. She knew my breast cancer history, and she said, before I even could, “I know, this is so unfair.”

I cried for all of 20 seconds before taking a deep breath and asking, “Do we know what stage and grade? And what do we do now?” It’s bittersweet to now be so much smarter, stronger, wiser about cancer… in 2009 when I was dx’d with breast cancer, I cried a river, could not listen to a single damn word the doctor said, and felt like the ground was disintegrating underneath me. This time, I knew what to do. I got a print out of my pathology report, and began Googling to find the most helpful melanoma resources online, being careful to take people’s stories with a grain of salt, knowing that typically it’s the people with the “worst” cases who are the most prolific posters. I called my girlfriend and my parents and a couple close friends for support. I took the day off of work to care for myself, and I did cry several times, but I also ate anti-cancer foods (blueberries, cabbage cooked in turmeric, green tea, 72% dark chocolate), took a long walk, and meditated in the woods. I started re-reading “Anti-Cancer: A New Way of Life” by Dr. David Servan-Schrieber, because it’s the most uplifting, practical cancer book I know. It’s “the good book,” as my family refers to it.

All day, my recurring thought was, “I can’t believe I was diagnosed with cancer for the second time today.” It felt so unreal. I keep reminding myself that a stage 0/in-situ melanoma is really not so horrible and worrisome, and it’s going to be completely dealt with in just one quick and easy surgery. From a rational standpoint, this is pretty minor. It’s just difficult emotionally, to have two types of cancers, by age 32. It makes me feel like I’m “cancer prone” or something, and makes me wonder what the hell else might be lurking in my body undetected. However, through brief Googling, I discovered that it’s likely that there is actually a link between breast cancer and melanoma. That is, several studies have found that women who are diagnosed with breast cancer are at higher risk for melanoma, and vice versa. No one had ever told me that before, so I’m not sure how true that is… but it’s something for me to research further. At least if there’s a link between the two cancers, it makes me feel better, in a way – it means I’m not just susceptible to developing any and every cancer, you know?

I have a lot of researching to do now. (If you have good melanoma resources or info, let me know!) I’ve been so immersed in the online breast cancer world; it’s strange to now be at square one with getting to know a NEW cancer. It’s wrong and unfair and I shouldn’t be in this position. But I’m trying to believe that something good is going to come out of this, that I just can’t see yet… because as much as I hated hearing anyone suggest that “cancer is a gift,” I must admit, my life post-breast cancer is so much better than my life pre-breast cancer. My amazing girlfriend and I have been together for 13 wonderful months now, and I won’t get into the whole story, but – I wouldn’t have met her, if I hadn’t had breast cancer! That makes it all worth it to me. If having cancer is what it took for me to find the love of my life, then so be it. What’s this melanoma going to bring into my life? That remains to be seen.

WTF, Universe?

2011-10-05T14:13:00.001-04:00

Happy F’ing Breast Cancer Awareness Month…

I was just diagnosed with cancer AGAIN. Except this time it’s malignant melanoma. Every cancer survivor’s worst nightmare is being diagnosed with cancer again. What are the [bleep]ing chances that a healthy, 32-year old woman would be diagnosed with two separate types of cancers in a two-year span?

I will never again trust a doctor who says, “Oh, I’m sure it’s nothing, but we should biopsy it anyway.” I have never had the experience of having biopsy results come back normal. Granted, I’ve only had two biopsies, but both times, the doctors said they weren’t concerned, and both times, IT WAS [BLEEP]ING CANCER.

The melanoma is, thankfully, in situ/stage 0. That’s the very earliest it can be caught, and the only further treatment required is having a larger chunk of skin excised in the area where the mole was (my left lateral thigh, by the way).

I’m a bit speechless. TWO cancer diagnoses by age 32? WTF, universe?

Pinktober

2011-10-01T14:55:00.004-04:00

Here it is, October. It's October first and I haven't yet left my house today, but I’m bracing myself for the obnoxious pink onslaught.

Breast Cancer “Awareness” month is more annoying than it is helpful, for numerous reasons. It should be Breast Cancer Prevention month or Breast Cancer Action month, for starters – we are all plenty AWARE, thank you very much, that breast cancer exists and is bad. For myself and many other breast cancer survivors, or people who have had loved ones die from breast cancer, it is insulting and painful to be confronted at every turn with pink products that, at best, are just ridiculous (pink toilet paper, pink frying pans), and at their worst, may contribute to breast cancer (pink-bottled alcohol, Komen’s toxic-chemical-containing “Promise Me” perfume). If I have the misfortune of having to refill my Tamoxifen in October (which happened to me last year), the pharmacy gives it to me in a bottle with a breast-cancer-pink cap. AT THE VERY LEAST, pink items that are trying to increase people’s “awareness” of breast cancer should be aimed towards people who genuinely may not be aware of all there is to know about the disease… NOT women who are already being treated for it!

Even just going to the supermarket during October is an ordeal for those of us who have been affected by the horrors of this disease – everywhere you turn, there’s pink. Hey, pink crackers, because we want you to be aware of breast cancer! Pink yogurt! We care about breast cancer! Pink paper plates! Pink ribbons on cereal! Breast cancer! Breast cancer! Hey, think about breast cancer! Pink bottles of seasoning blends! BREAST CANCER! Pink plastic forks and knives, because HEY, THINK ABOUT BREAST CANCER! PINK! RIBBONS! Pink bags of chips for breast cancer!!!! It’s exhausting and difficult. I’m more “aware” of breast cancer than I ever wanted to be, and October just feels like I’m having breast cancer shoved in my face again and again. If I’m not careful, I can get sucked back into the painful memories – sobbing on diagnosis day, followed by months of wires, needles, blood, fear, stranger’s hands. Spending the day before my 31^st birthday agonizing over the decision of whether or not to have both of my breasts cut off. Yeah, pass the bottle of pink crap, let’s take a trip down awareness lane.

In some ways, people argue, this commercialization of breast cancer is good, because more money is put into researching a cure, helping women access treatment, etc. However, things have really gone too far. Michaels, a craft supply store, has an entire pink/breast cancer awareness section during October. There are pink ribbons, stickers, paper, etc., including stickers that proclaim “LOSING IS NOT AN OPTION!” and other slogans common in the ‘fight against breast cancer.’ There are also Pink Parties, where you can pay $25 to take a class at Michaels and make breast cancer cards, banners, and scrap books. What the hell? We're supposed to happily make some lacy, pink, anti-breast cancer scrapbook, with pink-ribboned rosettes?? Think about how weird and wrong it would be if you went into a craft supply store and were confronted with a big display of, say, diabetes craft supplies, or alcoholism craft supplies. Can you even picture it?? There’s so much breast cancer paraphernalia to buy it almost seems like – as disgusting as this is – we’re supposed to find it “fun” to be a member of a special club and wear the cheerful, “FIGHT LIKE A GIRL!” shirts, the pink ribbon earrings, the promising perfume, while creating breast cancer art projects. It’s insane, and it doesn’t happen with any other disease. What about all the other types of cancer, huh? There are people who have cancer of the tongue, bladder, anus, brain. They don’t get t-shirts and baseball caps and jewelry and craft supplies. And I’m in no way arguing that they should! I’m saying that the energy that goes into creating and marketing and selling junk like pink toilet paper, pink alcohol, and pink buckets of fried chicken could be much better spent.

Nowadays, many companies are enthusiastically jumping on the pink ribbon bandwagon, pink-ing their products because it will increase their profits, not because they really care about eradicating breast cancer. Many consumers will choose pink products because they want to help end breast cancer, and it makes them feel good to purchase a pink product that they think is really doing something. It’s quite possible that it’s not. One woman who posted to BCAction’s Facebook page had come across pink office paper from a company that had promised to donate a portion of sales in 2010 to breast cancer research. It’s now 2011 and the paper is still being sold at Michaels, but not a single penny from those sales is going towards breast cancer research anymore. It’s all going to the company that makes the paper. I emailed Michaels to ask if any of the money from their Pink Parties goes towards breast cancer research, and if so, how much. The only response I received was from a customer service rep suggesting I snail mail the coporate office for "additional information about donations." "Additional" information, implying that I already had some preliminary information, which I did not. There's no information on Michaels' website about what they do with the profits from Pink Parties.

Breast cancer is not fun, pretty, pink. It is not something to celebrate and have a party about. Wake up, WAKE UP.

Edited to add, I really like this blogger's perspective on things. Here is her letter to the Susan G. Komen foundation, asking them to stop the Pinkwashing: http://cancerfree2b.com/2011/09/27/dear-susan-g-komen/

Against the Tide

2011-09-28T14:13:00.003-04:00

Last month, my girlfriend and I volunteered at “Against the Tide,” an inspiring swim/kayak/run event put on by the Massachusetts Breast Cancer Coalition (MBCC). The people who swam, ran, and kayaked collected financial pledges totaling over $70,000!

It was my second year volunteering, and it is the only breast cancer-related fund-raising event I’ve participated in. I’m quite picky about which organizations I choose to support, and which events I’ll take part in. I greatly respect the MBCC’s work and mission – they define breast cancer as a political issue, challenge the commercialization of it, and focus on investigating and eradicating the environmental links to the disease. Check them out here.

The MBCC had many corporate sponsors for the event, such as natural foods stores, organic food companies, and organic/natural bodycare product companies. The MBCC would never partner with companies that profit from cancer, nor promote products that contain known or suspected carcinogens, unlike other anti-breast cancer organizations like the Susan G. Komen For the Cure foundation. The Komen Foundation is hypocritically selling a perfume, called “Promise Me,” which contains toxic chemicals. Go here to help Breast Cancer Action raise a stink about it!

My tasks at Against the Tide were to write the swimmers’ numbers (for identification and safety purposes) on their arms and legs with a big Sharpie marker….

….And then to enthusiastically ring the cowbell as the countdown to the race began!

I was inspired by everyone’s energy and dedication, and met many wonderful people.

There was a “mural of honor,” where people could honor loved ones who had been affected by breast cancer, by writing their names and stories and hanging them on the mural.

I wrote a couple names, and was touched by the message my girlfriend hung up for me. While I was looking at my name up on this mural of breast cancer survivors and victims, for a moment it seemed so strange and unreal – REALLY? I had breast cancer? My name belongs up here? Every now and then the absurdity of it washes over me and I find it hard to believe. Probably every woman who has been diagnosed feels like that. None of us should have to have our names up there or be a member of this club. And so, we keep trying our damndest to prevent other women from developing breast cancer!

Breast Cancer Action Interview!

2011-06-25T12:20:00.002-04:00

The awesomest breast cancer organization in existence, Breast Cancer Action, has interviewed me in their latest newsletter! Check out the newsletter here .

Trapeze!

2011-05-14T08:42:00.003-04:00

I'm back at trapeze!!! :)

I'm taking the beginner class, and it doesn't feel weird...I'm happy to be there. The cancer treatments definitely altered my body in some ways and affect/change my trapezing, and I have to adjust, but I can do this and I'm overjoyed. There are certain stretches that are difficult for me to do, since the left side of my chest and armpit is tight due to scar tissue and radiation, but there are other stretches that I'm surprised to still be able to do fairly well, despite not having done them in so long. I did have to leave one class half an hour early due to Tamoxifen side effects, and that was a bad night for me - I actually cried a little while walking down the stairs and back to my car, suddenly in such a "F you, cancer" mood.

But this week's class was better!

We did my ALL-TIME FAVORITE trick, the catcher's lock roll down. Sorry the quality of this photo is so bad, but it's the only one I have of this particular trick/position. And it's an old photo, from the 2nd (and only!) recital I did a few years ago. (I'm not really into performing! I just do this for the fun of it!) In the photo, I'm actually in a double catcher's lock (e.g. I rolled up twice), but this week I just rolled up once, to roll out of it. The roll out is super fast and super fun; it makes me giggle and shriek and feel so happy I want to hug the entire world. I did it again and again, not even noticing that I was getting golf-ball-sized, purple bruises on my arms!

My body's bruising quite a bit from trapeze, and I've had plenty of sore muscles to deal with, and some palm blisters, but all of that will calm down once my body adjusts to trapezing regularly again. Which it will! Already, my body remembers so many more movements on the trapeze than I expected, which is so exciting and such a relief. It feels SO GOOD to be back, and this is EXACTLY the "physical therapy" I needed!!!

1 in 8

2011-05-14T08:37:00.005-04:00

Remember I made and decorated that plaster cast of my torso? It's on display all month at a local cafe, along with several other women's amazing torsos, as part of the "One in Eight Torso Project."

The following is the personal statement I wrote to accompany it in the display:

"At the start of Forest Moon’s torso-making workshop, I did not have a clear sense of how I was going to decorate my torso, and I was surprised by how much joy ended up in it.

I was diagnosed with breast cancer in November 2009 and spent the whole winter in treatment. After 3 surgeries and 6 weeks of daily radiation, finally it was over, in early May 2010. The sunny, spring theme of my torso depicts the immense joy and relief I felt when spring was in full swing and my daily trips to the hospital finally ended. I felt like I was blooming back to life along with the trees and flowers, and I spent the summer falling in love. The sun on my left (treated) breast was inspired by the Beatles lyrics, “It’s been a long, cold, lonely winter…here comes the sun.”

And yet, the one thing the winter was NOT was lonely! I was so grateful to have incredible support from my friends and family and community. I felt swept up in a tidal wave of love, especially on the day when the New England Center for Circus Arts (NECCA), where I’ve been a board member and student for 5 years, hosted a benefit show for me.* The trapezist on my torso represents the love and support I received from the NECCA community, as well as my passion for trapeze. Trapezing in between surgeries and during radiation contributed greatly to my healing!

Now that I’m a year past treatment, my focus has expanded beyond just my breast cancer to the breast cancer epidemic as a whole – specifically, the connections between breast cancer and the environment. On a regular basis, I educate myself about the dangerous chemical cocktails found in our air, water, soil, food, and products, and advocate for their elimination. I will never know what caused my cancer, and I’m sure it’s very complex, but I spent the first 23 years of my life living in a town with a breast cancer rate 20% higher than that of the rest of the state, so I believe the environment at least played a role. Now when I look at my decorated torso, at the clear blue sky and vibrant green grass, what I see is that human health depends upon the Earth’s health, and upon our willingness and ability to treat the Earth’s body with as much love and care as we treat our own."

*Note: Although I didn't have the space to include these details in my statement, I want to acknowledge and clarify that although the benefit was held at the NECCA studio, it was spearheaded by Amanda and Henry of SHOW Studio, a separate Circus Arts facility. Thank you, Amanda and Henry!!

Taking a Look at Prevention Resources

2011-04-05T14:44:00.016-04:00

Now that I am well beyond breast cancer treatment (other than continuing to take a Tamoxifen pill daily), I'm taking a step back to see not just my own personal journey with breast cancer, but the breast cancer epidemic as a whole. Specifically, I'm learning as much as I can about the links between involuntary chemical exposure and breast cancer risk. It's not a topic breast cancer patients typically hear anything about from their treatment team, or in breast cancer support groups, or in the literature of the vast majority of breast cancer organizations, so I've really had to seek it out.
Some of the best resources I've found are Breast Cancer Action (an empowered voice of unbiased truth, since it is the only national BC organization that doesn't accept money from anyone that profits from or contributes to cancer), the Breast Cancer Fund, the Silent Spring Institute, and Sandra Steingraber's book "Living Downstream: An Ecologist Looks at Cancer and the Environment." It is clear to me that toxins in our environment and products play a big role in causing cancer. I'm dismayed by how infrequently cancer prevention literature/resources say anything at all about this topic. When chemical exposure IS acknowledged as a cause of cancer, usually the only advice that is given is about how we can each change our personal behaviors, diets, and lifestyles to reduce our exposures. This is important, but not enough. If big corporations continue to contaminate our environment and products with toxins, and the government continues to allow it, our personal choices and behaviors can't make that much of a difference.

I decided to Google "breast cancer prevention" to see what came up. Would the links actually say anything about the link between chemical exposure and cancer risk, and what we can do about it? Googling "breast cancer prevention" (with the quotes) yielded 544,000 results on March 30, 2011. Here I will review the results of the first 3 pages. My guess, without yet looking at any, is that less than 5 of the results from the first 3 pages will say anything about ways in which we women should engage in activism to demand regulation and/or elimination of environmental carcinogens. The websites that talk about involuntary environmental exposures at all will make it only about personal diet and lifestyle changes - e.g. they will tell us to ingest only organic, hormone-free dairy products, but they won't tell us to demand that milk producers stop giving the cows hormones.

Here we go! These are the 27 websites in the first 3 pages of results.

1. MedicineNet -

No mention of environmental pollutants contributing to cancer.

Quote: "...new medications are being developed to reduce the risk of breast cancer among those at high risk of contracting this disease. For the majority of women, lifestyle changes, a healthy diet, cautious use of selected antioxidants, exercise, and weight reduction can also help reduce the chance of developing breast cancer. To date, the most important strategy in improving survival is still breast cancer screening and early detection."

2. Mayo Clinic-

Mostly advice about lifestyle changes...
Quote: "Breast cancer prevention starts with healthy habits — such as limiting the amount of alcohol you drink and staying physically active. Understand what you can do to prevent breast cancer."
But they DO say a bit about environmental exposures: "Avoid exposure to environmental pollution. While further studies are needed, some research suggests a link between breast cancer and exposure to the polycyclic aromatic hydrocarbons found in vehicle exhaust and air pollution."

3. National Cancer Institute-
Quote: "Different ways to prevent cancer are being studied, including: • Changing lifestyle or eating habits. • Avoiding things known to cause cancer. • Taking medicines to treat a precancerous condition or to keep cancer from starting."

In regards to chemical exposure, the NCI actually denies the link to cancer:
"Studies have not proven that being exposed to certain substances in the environment (such as chemicals, metals, dust, and pollution) increases the risk of breast cancer."

4. breastcancerprevention.com-
No mention of chemicals and breast cancer risk.

This is what it says in the "About Us" section: "Clinical research studies offer us the best hope for the proper evaluation of drugs and medical techniques. This site offers you the opportunity to obtain credible information on clinical trial research and to assess your chances of getting breast cancer."

Here's what they say about risk: "Risk for developing breast cancer is individual. It depends on a combination of lifestyle and personal traits known as 'risk factors.' The following risk factors are strongly related to the disease and can alert you and your physician to the need for careful follow-up: * A family history of breast cancer, especially in your mother, sister(s), or daughter(s) * Age -- in general, the older you are, the greater your risk * Never having borne a child * Having your first child after age 30 * First menstrual period at an early age * A history of benign breast disease that required biopsies * Other breast conditions: lobular carcinoma in situ (LCIS) or atypical hyperplasia."

5. Breast Cancer Fund-
YAY! BCF GETS IT! The website's tips for breast cancer production DO include choosing safe cosmetics and food and household products, protecting yourself and your family from toxins as much as possible, etc. And YES, there is a tab called "BIG-PICTURE SOLUTIONS" that talks about making prevention a public health priority, and other ways to engage in activism.

6. Breast Cancer Prevention Fund-

Quote: "It could be that a woman of average risk for breast cancer might lower her risk somewhat by changing those risk factors that can be changed. These include giving birth to several children and breast feeding them for several months, not drinking alcohol, exercising regularly, and staying slim. It is also important for women to perform monthly breast self-exams."

Also mentioned as preventative strategies are prophylactic Tamoxifen and mastectomy, smoking cessation, exercise, and prayer. This website exemplifies what I refer to as the "Sandra Dee advice" - nevermind the people who pollute our Earth with cancer-causing chemicals. You'll be alright if you make the effort to be a skinny, hetero, goody two shoes! Have lots of babies! Don't drink and smoke, and watch your figure! PRAY! And if you think that's not enough, chop your breasts off and take a carcinogenic drug!

7. Breast Cancer Prevention Institute-

Wow, actually an anti-choice site masquerading as breast cancer prevention! The vast majority of the site consists of "reports" and "fact sheets" that claim that having an abortion increases your risk of breast cancer. IT DOES NOT.

8. breastcancer.org's "Lower Your Risk" -

Quote: "Some of the factors associated with breast cancer -- being a woman, your age, and your genetics, for example -- can't be changed. Other factors -- maintaining a healthy weight, exercising, smoking cigarettes, and eating nutritious food -- can be changed by making choices. By choosing the healthiest lifestyle options possible, you can empower yourself and make sure your breast cancer risk is as low as possible."

Exposure to chemicals IS listed as an "emerging risk." (i.e. probable risk, but more research is needed). However, the only advise is to not use pesticides on your lawn, choose safe cosmetics, buy organic food, etc. - there is no suggestion of lobbying for the carcinogen-producers to stop producing them.
9. About.com - Cancer -

Top Ten prevention strategies, all diet and lifestyle. No mention of chemicals.

10. National Cancer Institute -
Quote: "The Breast Cancer Prevention Trial (BCPT) was designed to see whether taking the drug tamoxifen (Nolvadex®) could prevent breast cancer in women who are at an increased risk of developing the disease."
Absolutely NO talk here, of course, about preventing breast cancer by reducing exposure to carcinogens. It's the opposite, in fact - they want women to voluntarily take a carcinogenic substance in an attempt to prevent breast cancer.

11. World Health Organization-
They say that their "key message" is: "Early detection in order to improve breast cancer outcome and survival remains the cornerstone of breast cancer control."

They also say the following about prevention: "Control of specific modifiable breast cancer risk factors as well as effective integrated prevention of non-communicable diseases which promotes healthy diet, physical activity and control of alcohol intake, overweight and obesity, could eventually have an impact in reducing the incidence of breast cancer in the long term."

Then the rest of the webpage is about early detection. Nothing at all about chemicals in the environment.

12. Center for Disease Control-
Prevention strategies listed are the usual "Be a Sandra Dee" stuff - don't drink (or swear or rat your hair), exercise, be skinny, get screened, etc. Then there's a heading that momentarily got me hopeful - "How Can I Help Others In My Community?" Silly me for thinking it might say things like, "boycott KFC's 'Buckets for the Cure' campaign promoting carcinogenic chicken," when the answer is, of course, to just help your neighbors get mammograms.
13. About.com - All About Breast Cancer Prevention and Lowering Your Risk of Breast Cancer

Oddly enough, most of the article is about performing Breast Self-Exams, getting mammograms, and learning about your breasts, none of which actually prevent breast cancer. The article briefly mentions the Sandra Dee lifestyle changes to make - have babies, don't drink, be skinny, yadda yadda.

14. earlycancerdetection.com-
This website is all about why women should have thermograms instead of mammograms. Odd that a site about early DETECTION comes up on the second page of a search for PREVENTION, but it does state: "Why are we experiencing this breast cancer epidemic? While some cancers may arise from an inherited genetic defect (estimated at 5-10%), 90% - 95% arise from damage to the genetic material within normal cells. Genetic damage is a result of hormone imbalances, exposure to certain chemicals, and/or various forms of radiation. Our universe is filled with toxic chemicals which act like estrogens or what we call endocrine disrupters. These may constitute our greatest exposure risk."

15. International Symposium on Breast Cancer Prevention- Quote: "This multidisciplinary symposium on breast cancer prevention that focuses on epigenetics, nutrition and public policy is organized by the International Breast Cancer and Nutrition (IBCN) group initiated at Purdue University, USA, in partnership with the French School of Public Health (EHESP) in Rennes, France. This initiative recognizes that different countries have unique perspectives which would benefit a sustained international effort to prevent breast cancer, and that the education of trainees in cross-disciplinary and international collaboration is an essential component in addressing global public health-related issues. The goal of this symposium is to bring together global public health actors and advocates, and researchers on breast cancer prevention and nutrition to provide a platform for discussion among scientists, clinicians and other professionals in the biology, epidemiology, medicine, nutrition, communication, education and public policy fields."

Interesting!

16. breasthealthcancerprevention.com - Susun Weed
The best yet! She GETS it!
Quote: "My studies spanning 25 years and many disciplines have convinced me that the majority of breast cancers are causally related to the high levels of radiation and chemicals released into our air, water, soil, and food over the past 50 years. United States government researchers estimate that 80 percent of all cancers are environmentally linked. " "But there’s a limit to the control that any one woman has over her exposure to petrochemicals, radiation, and other environmental cancer-inciters. Limiting the production and discharge of substances that initiate and promote cancer is collective work. When our individual acts are combined with the acts of others, we can achieve the envisioned social change. For example, as I saw more and more evidence that chlorine residues from papermaking contribute to breast cancer, I began to ask for chlorine-free paper from my book printer. They went from amazement and puzzlement at my request to contracting with a new paper supplier who can provide them with elemental chlorine-free paper. (I’m not the only one asking, you see.) " THANK YOU!!!!

17. Web MD-
Same old, same old. Prevention strategies listed are exercise, don't take Hormone Replacement Therapy, maintain proper nutrition and diet, and possibly take Tamoxifen.

18. CA - A Cancer Journal for Clinicians-
Here is an analysis of the NCI's prevention tips, which says, in a nutshell, diet and lifestyle changes might be good, but.... Quote: "To date, only two options have been proven to reduce the risk of breast cancer in high-risk patients: Bilateral prophylactic mastectomy and tamoxifen therapy." (They're saying it's not even ENOUGH to be a Sandra Dee - you still may have to have your breasts removed and take a prophylactic carcinogen, nevermind that that's an oxymoron!)

19. Article called "Grab Some Cabbage and Cantaloupe After You Go Jogging," by Lera S. Wenger and David Schlundt, Ph.D.-
Um....
Quote: "Recommendations for preventing breast cancer would include many aspects of a person's behavior.[...] most women do not realize they may have a chance at decreasing their odds for developing breast cancer by modifying their behavior."

Ladies, haven't you heard yet?? Change your behavior and you, too, can be a cancer-preventing Sandra Dee! Be young, skinny, and hetero! Have lots of babies ASAP! Forget about cancer-causing chemicals in the environment... Run and eat melon!

20. Doctor Murray

He says this, in the middle of his list of risk factors: "Environmental factors: Among the factors that have been linked to breast cancer in varying degrees are exposure to xenoestrogens (synthetic compounds that mimic estrogen), second-hand smoke, pesticides, herbicides, power lines, electric blankets, radiation, and lack of exposure to sunlight." BUT, the whole article is about diet, nutrition, supplements, and screening. He, like many other alternative health people, acts as if the chemicals are just raining down from the heavens and we can't do anything other than put up our umbrellas.

21. Natural News - Why Isn't It Called Breast Cancer Prevention Month?

This article claims that "Breast cancer is anywhere from 70% - 90% preventable through simple changes in diet, exercise, consumer product use and nutritional supplementation," then goes on to compare conventional cancer treatments to the slavery of Black people. WOW! I...have no words.

22. Dr. Mercola-

Similar to Dr. Murray and Natural News, Dr. Mercola says, "I believe...75 to 90% of breast cancers could be avoided by strictly applying the recommendations I will review below." Then he prattles on and on about diet and lifestyle changes, the usual ones as well as stuff like blending and drinking coconut oil, curcumin, and eggs several times a day. He says nothing at all about how we could be engaging in activism to make the carcinogen-producers stop.

23. Prevention.com-
This is an article that dispels 12 myths about breast cancer. Here's one:
"Myth: Drinking from a plastic water bottle left in a hot car can cause cancer. Fact: This rumor falsely claims that dioxins—a group of toxic chemicals associated with an array of health problems, including breast cancer—leach from the heated plastic into the water. Plastics do not contain dioxins, and the sun's rays are not strong enough to create them, says Michael Trush, PhD, deputy director of the Johns Hopkins Center for Urban Environmental Health. Most single-use beverage bottles sold in the United States are made from polyethylene terephthalate (PET), a substance tested extensively for safety. There is some evidence that heat can cause bisphenol A (BPA), a compound that's been shown to have estrogenic effects in animal studies, to leach from plastic bottles into the water. (The "estrogenic effects" are thought to impact cancer risk.) However, most single-use water bottles sold in the United States are made from BPA-free plastic. And there's no proven link to breast cancer in women anyway. To be safe, drink from a reusable plastic bottle labeled "BPA free," or choose water bottles with a "1," "2," "4," or "5" in the recycling symbol on the bottom."
So, this is the second website so far that not only doesn't give advice on how to advocate for the elimination of carcinogens in the environment, but in fact does the opposite, and says, eh, it's not so bad.
24. Dr. Weil-
It's just a Q&A about Turmeric and breast cancer prevention. Nothing about environmental exposures.

25. New York Times- "Breast Cancer Prevention and Lifestyle Factors."
Do I even have to read the article to know it doesn't say, "Know who your local representatives are, and call them to support or oppose legislation dealing with chemical regulation"?

26. knowbreastcancer.net
The top 7 strategies for breast cancer prevention are, according to this website: get enough vitamin D, avoid Hormone Replacement Therapy, use safe hair products, find safer alternatives to mammograms, filter your water, manage your estrogen levels, and detox from sugar and alcohol and cigarettes.
Nothing about stopping chemical pollution.

27. Fred Hutchinson Cancer Research Center
"Exercise and Breast-cancer Prevention: Study Finds It's Never Too Late to Start, and the Activity Need Not Be Strenuous"
Nope, the article doesn't suggest that you exercise by climbing up and down your staircase while you're having a phone conversation with your local representatives about chemical regulation.

So, were you keeping score?
Here's the tally: out of 27 websites, 2 say that chemical exposure does NOT increase breast cancer risk. Seventeen websites do not say anything at all about chemicals. Eight websites say that chemical exposure increases breast cancer risk. Out of those 8 that acknowledge the link, only 2 websites suggest taking action beyond changing your personal behavior.
We have a long ways to go!

Spring Fever

2011-03-09T19:55:00.005-05:00

I just did something I haven't done in months: blasted the music, and hula-hooped/danced in my underwear in my kitchen! I had forgotten how much fun that is! I meant to just do that for one song, because at first it was hard. I'm really out of shape. After 3 minutes, it was making me tired and my hips ached and I wanted to stop... but I made myself keep going, and then, like always, once I pushed through that difficult spot, it felt great! Twenty five minutes later, I was hot and sweaty and out of breath and HAPPY!!! (And my downstairs neighbors were probly ready to shoot me!)

Benefits of dancing in my hula hoop:
* It's fun and makes me happy!
* It's good for my body! It encourages lymph fluid to flow!
* My floor is now clean, because while I was dancing, I wore these Microfiber Cleaning Slippers. (I bought them because I wanted to be like Pippi Longstocking, who cleans her floor by skating around with scrub brushes strapped to her feet!)
* I save money and energy, because I get so hot I turn the heat down.
* When I get hot, it feels like summer, and makes me think of the tropics instead of snow!
* It gives me energy. Earlier in the day, I was so tired I was planning on going to sleep early, and figured out how to re-configure my to-do list so that I didn't have to leave the house for the rest of the day. After hoop dancing, I had so much energy I decided to not only do some of those errands I'd been putting off, but to WALK downtown instead of drive!

I am going to try and start hoop dancing regularly again. Part of my inspiration was Kris Carr's vlog on the importance of exercise. Do you all know Kris Carr? She's the author of Crazy Sexy Cancer - woohoo!!

Hoop dancing like this tonight felt really good because, I need to confess: I have hardly been exercising at ALL, for MONTHS. I feel guilty and embarrassed. How did I get like this? Bizarrely enough, I was in better shape during cancer treatments than I am now!! In fact, I was very active and fit during cancer treatments, walking, doing yoga, doing pull-ups, and TRAPEZING IN BETWEEN SURGERIES! Even during the 6 weeks of radiation, I walked several times a week with my pedometer, and trapezed.

I'm not sure what happened. I think I lost my momentum. I have only been to a total of 6 yoga classes in probably the past YEAR, and have only trapezed twice (I think) since last summer. This is hard for me to admit to, and hard to write about, because it feels so "not me." Trapeze has been my passion for years, to the point where I brought a photo of me on the trapeze to my first meeting with my surgeon, and said, "I don't care what my breast ends up looking like, or if I have to lost a breast - my priority is getting back on that bar!" Three weeks after my lumpectomy, I was indeed back on that bar, doing pullovers and meathooks. But now... everyone keeps asking me, "So, are you still doing trapeze?", and my answer is a vague, "Oh, a little bit, but not as much as I used to." It's beginning to feel like a lie, and like the correct answer is "no." Part of what's holding me back is money - trapeze is quite expensive, in relation to my monthly income. But what's holding me back probably just as much is that I'm a little nervous about my "new" body. In the fall, I did an hour of trapeze and some pull-ups, and then had rib pain for an entire month. My muscles are tight, both from radiation and from the lack of stretching, and I worry about injuring myself. Logically, I know I'm being ridiculous - I CAN get back to trapeze, if I do it slowly and safely and with the highly supportive and competant teachers' support, and exercise is great for helping to prevent a cancer recurrence, and for treating my lymphedema. But I still have these irrational mental blockages and worries that I need to work through. I have never been very flexible, even when I was stretching on a regular basis as part of my trapeze training, but now I am really REALLY stiff... and it's going to take a lot of work and patience to regain enough flexibility to do trapeze again, and it's a catch-22: part of me is too embarrassed to go back to the studio until I've done a lot of stretching and regained some flexibility, but I don't have the self-discipline to do it on my own and I need to be in the studio TO work on stretching. I'm actually contemplating joining the beginner trapeze class for a semester, for lack of a better option. There is no intermediate class, because the intermediate students are mixed with the advanced class... I used to be in that class, and I fit well in it. Now, I wouldn't fit in it anymore. Most students in that class are training super hard, several hours a week, really pushing themselves, because they are training to be professionals. I, on the other hand, need to take things gentle and slow - I need trapeze to be like my rehab. It might be a little awkward to join a class of people who maybe have never even touched a trapeze bar before, when once upon a time I could do over 80 trapeze tricks, but we'll see.

Having cancer, and going through cancer treatments, was unpleasant and difficult in many ways, but I recovered from it SO WELL - in all ways except for this. It really surprised me. But now, spring is coming, and it's time for me to bloom back to life with the rest of the Earth. I can do this!! And I think hoop dancing tonight was a great step in the right direction!

An update, after 3.5 months!!!

2011-02-25T12:23:00.005-05:00

Wow, I can't believe I haven't posted in 3.5 months! I'm super grateful that I haven't had anything to post about. But since I'm snowed in right now and very cranky about not being able to go out and do the things I was going to do, I thought I would post an update here instead.

Here's what's been going on:

January:

I had my 6-month check-up with my oncologist. Everything was fine. I'd now been taking the Tamoxifen daily for 7 months and still had no side effects, hooray! She did her usual physical exam, and then I had her check this sore spot on/in between my ribs, right under my left (treated) breast. It had been hurting for about a month, but not in an "OMG I HAVE BONE METS" way - it only hurt when I reached up and out. This made me think it was a muscle injury, possibly from my one trapeze lesson in November (god, I miss it), or that time when I maxed out on pull-ups without warming up first. M confirmed that it was probably a muscle thing, and suggested warm compresses and anti-inflammatories. She got a kick out of the fact that when she was trying to examine my rib(s), I was laughing and wincing simultaneously, because it hurt but I'm also ticklish. I briefly saw E, the clinical trial manager and my 2nd favorite person on my cancer care team, and she wished me a happy early birthday and apologized for not wearing polka dots. Ha!

I had what was probably my last visit with my naturopath, because she's not going to be seeing patients anymore, wwaaaah! I have yet to make an appointment with the new naturopath. She sent me off with a bunch of really helpful literature on integrative treatment for breast cancer, which re-affirmed my commitment to take all of the supplements... sometimes I forget, wait, what's so great about green tea? Why am I taking this melatonin? So it helps me to read about exactly what each of my supplements is for...then I remember, oh yeah, this capsule provokes any lingering cancer cells in my body to commit suicide, YEAH!!! and I swallow another one happily. :)

Interestingly, the staff at the multi-disciplinary clinic where I've been seeing my naturopath learned that giving me the "post-radiation" thermogram a month after radiation ended might not have been all that useful, because the effects of radiation may linger for a whole year. So they want to give me another (comped) thermogram when it's been a year since the end of radiation. I'm curious to see what it will show.

I had my BIRTHDAY MOCHA!!! :) As you may remember, I gave up sugar last January and decided to only allow myself two mochas per year, one on Strolling of the Heifers day in June, and one in January for my birthday. A (my super amazing girlfriend whom I'm head-over-heels in love with) came for the weekend, and we went to Coffee Country on my birthday and we each got a double mocha with whipped cream. It was so so so sooooo delicious, even better than I had imagined/remembered. Super chocolately, like hot chocolate with coffee, but better, and ohmygod, I was so in heaven. And then, happy surprise, my friend D showed up with her 3-yr-old daughter, R, and they joined us for a while and it was so nice!

I'm now eating a little bit of sugar, even beyond that mocha. My naturopath encouraged me to relax with the "self-flaggellation" over my sugar consumption, haha. A and I made an amazing pear ginger spice cake for our birthdays (hers is 3 days before mine!!), with a butter/maple/apple cider sauce, and it had sugar in it, and it was so good that I had 3 pieces in one day. I still try to avoid refined sugar whenever possible, but I've decided it's okay to have a little bit here and there. I at least eat much smaller portions of sugar-y things than I used to... e.g. instead of a big ice cream sundae, I will have literally a tablespoon full of ice cream, and it still makes me happy.

February:

I had my first annual breast MRI, up at DHMC. A brought me to the appnt, in the middle of a snowstorm. I'm not sure how long I was in the machine for, but it was approximately 20-25 mins, and the strangest part of the whole thing was having to have little packets of olive oil (or something?!) taped to my nipples!! The MRI tech said they were "markers." She also wanted to put a "marker" on my biopsy scar, but that was weird, because the biopsy scar was LONG gone since I'd had a lumpectomy and 2 reexcisions since then. I pointed out the big lumpectomy scar (big compared to what the biopsy scar had been, that is), but she didn't put anything on it. Whatever! Then I lay completely still, face down on the table in that spaceship-like tube, and listened to the loud bangs and clangs, the whirring and the buzzing, for however long it was. It wasn't nearly as difficult as last year's MRI, maybe because this year I knew what to expect, and I daydreamed and sent metta to myself and others. At the end of it, I could barely get off the table, though - my breasts were a bit sore from being compressed by the sides (nothing as bad as a "smash-o-gram" would've been, though!), and my whole body was stiff from having been so completely still in one position for so long. My closed eyes had apparently been smushed against the thing you put your face in, because for like half an hour afterwards, my vision was blurry. I couldn't read the signs in the hallways as we were leaving, and it was freaking me out. (I'm the only one in my family who DOESN'T need glasses/contacts!)

I waited NINE DAYS for my MRI results and still hadn't heard anything, so finally I emailed K. Turns out there'd been some kind of mistake, and she hadn't gotten the report like she was supposed to, and I hadn't received the letter that someone was supposed to have sent me. So she looked up the report and then told me in that email, "it is NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! go have a GREAT WEEKEND" yay! and i did just that. I have my 6-month check-up with K in the beginning of March, btw. I'll keep you posted.

I went had two appointments with an Occupational Therapist who has training in lymphedema (LE), and specifically in breast and truncal lymphedema. Because yes, I have breast lymphedema! My left breast was swollen after surgery, which wasn't a big deal - I mean, I expected it would be - and at the time I just kind of joked about how funny it was that my treated breast was bigger than the other, despite having had tissue removed 3 times. But then, the swelling never went away and in fact increased after radiation. It's been a year since my surgeries, and 10 months since radiation ended, and my left breast is still bigger than the right one. However, it's pretty mild, compared to other women's LE, and it doesn't hurt, thankfully. (I'd say the difference is less than a cup size, so no staring at my chest, people!!! You likely won't notice a difference!!!) This OT did Manual Lymphatic Drainage Massage, gave me some exercises to do at home, put some Kinesio tape on my breast and the rib that had been sore, suggested I could wear a compression bra if I wanted to, and sent me on my way. I was glad my LE was mild enough to not need more than that. In fact, I was skeptical of my need to be there at ALL, but I know that with LE, it's best to get some treatment and education at the very first signs of a problem, because with LE there's no cure and there's no going back. Once you have it, it can be "managed," but never really goes away. So in that sense, I'd rather be overtreated than undertreated. And, this woman was very nice, and it was relaxing to lie there for an hour while she gently massaged my torso and told me fascinating stories about being a part of the women's movement in the 70s, and insurance covered it, so why not? :)

It feels a bit strange to be publicly writing about something as personal as a swollen breast, but the thing is, breast lymphedema is much more common than most people realize. It's not something even breast cancer survivors talk about much. Most of the LE conversations are about ARM lymphedema, which is most commonly triggered by axillary node dissection surgeries (i.e. having a LOT of your lymph nodes removed), but can also happen after just a sentinel node biopsy (SNB), which is what I had. I only had 3 lymph nodes removed. The OT thinks my LE was likely caused by the radiation, not really the SNB. Step Up Speak Out, a great LE resource page, has this section on breast and truncal LE.

Next up is my 6-month check-up with K, in a week or so. I don't mind seeing K, of course, but I'm a little confused about why I need to see her 2 months after I just saw my oncologist. An MRI + two breast exams in the span of 2 months seems like overkill... but oh well! At least I don't have follow-ups with the radiation oncologist to add to the mix!! (I was supposed to have made an appnt with him for like December or something, but I don't plan on ever going back to him!!!)

One Year

2010-11-09T20:08:00.003-05:00

One year ago today, I was diagnosed with breast cancer, and thought my world was falling apart. But today, I am happy and healthy and life is GOOD!

This is my torso, which I recently made and decorated at a Forest Moon workshop. It shows how happy my breasts and whole being are today!

I am so, so grateful for my life, and for all of the love that's in it. I'm so grateful for the care I received from my treatment team; and for all of the support from my family and friends; and for my totally amazing girlfriend, whom I would not have even met, if I hadn't had breast cancer. Oh, life is such a mystery!

Breast Cancer Awareness Awareness!

2010-10-07T10:36:00.002-04:00

[Reposted from my Facebook wall]

OKAY, EVERYONE, I’m ruining the game!!!

This is what’s making the ‘rounds on FB:

“Replying to Breast Cancer Remember the game last year about what color bra you were wearing at the moment? The purpose was to increase awareness of October Breast Cancer Awareness month. It was a tremendous success and we had men wondering for days what was with the colors and it made it to the news. This year's game has to do with your handbag/purse, where we put our handbag the moment we get home for example "I like it on the couch", "I like it on the kitchen counter", "I like it on the dresser" well u get the idea. Just put your answer as your status with nothing more than that and cut n paste this message and forward to all your FB female friends to their inbox. The bra game made it to the news. Let's see how powerful we women really are!!! REMEMBER - DO NOT PUT YOUR ANSWER AS A REPLY TO THIS MESSAGE- PUT IT IN YOUR STATUS!!! PASS THIS TO EVERYONE YOU KNOW :-)”

Where to start, where to start!! I’m not even going to bother taking the time to make this note of mine witty and funny and all of that, because really I’m just plain mad.

IF YOU WANT TO TEASE THE BOYS BY TALKING ABOUT SEX AND PRETENDING YOU’RE TALKING ABOUT YOUR PURSE, HAVE AT IT, but it’s an insult to those of us who have had breast cancer – or, hell, who have loved ones who have DIED of breast cancer – to pretend that this ridiculous game has ANYTHING AT ALL to do with breast cancer awareness. And as another breast cancer survivor puts it in her blog, “Who on this big blue planet is still not aware of breast cancer? I'm guessing somewhere deep in the Amazon, a monkey has tied a pink ribbon to a tree in honor of October.” We don’t need any more breast cancer “awareness.” We need a damn cure and prevention. We don’t need pink/ribboned dog bowls and toolkits and toilet paper and buckets of fried chicken and shoelaces, with pennies going towards research; we don’t need producers of carcinogenic products slapping pink ribbons on their crap in hopes that we mistakenly think they’re helping us instead of giving us more cancer; and we DON’T NEED people inventing and spreading silly, giggly, sex-talk games IN THE NAME OF BREAST CANCER AWARENESS!

If you want to help women with breast cancer and their families, donate money to an organization like Breast Cancer Action, or bring a meal to someone who’s going through chemo, or participate in a walk. If you want to help prevent breast cancer, educate yourself about diet and lifestyle changes you and your family can make (I recommend Anticancer by Dr. David Servan-Schrieber), reduce your exposure to environmental toxins when possible, and advocate for the producers of toxins to stop producing them and for the government to ban them. (The just-published State of the Evidence report, by the Breast Cancer Fund, is a great place to start). If you don’t at all want to focus on breast cancer, you really, really DON'T HAVE TO... just please don’t kid yourself/insult breast cancer survivors by thinking that you TALKING COYLY ABOUT YOUR HANDBAG is doing a damn thing to help end the breast cancer epidemic. This is even MORE ridiculous than last year's "post the color of your bra" game, which did nothing to get the BLOODSTAINS out of MINE.

http://bcaction.org/index.php?page=frequently-asked-questions%EF%BB%BF - Breast Cancer Action's FAQ

http://www.breastcancerfund.org/media/publications/state-of-the-evidence/ - State of the Evidence 2010 report (the connection between breast cancer and the environment)

http://www.anticancerbook.com/ - Anticancer: A New Way of Life, by David Servan-Schrieber

(Pass this on as you wish!)

6-month check up with K

2010-09-23T19:48:00.005-04:00

I haven't updated in nearly a MONTH. That's because my life has been so full and cancer is a thing of the past!

But today I had my 6-month check up with my surgeon. I was surprisingly nervous about it. Although I enjoy K as a person, I just was NOT looking forward to going back to the hospital, to talk about cancer, and have her feel my breasts to check for more cancer, and figure out a plan on how to be screened for cancer for the rest of my life. NO FUN!

Thankfully, the appointment went really well:

Breast exam was totally fine; my breasts are healthy and normal
K thinks my risk of recurrence is very low. She didn't argue with me about the mammography issue, which shocked me! She's fine with me instead having an MRI every year or even every other year!
I don't have to have another check-up with K until the SUMMER!
Since we didn't spend the appointment engaged in a mammography discussion (which is what I had expected), we instead got to spend the rest of it chatting and laughing about her dog and random stuff. So much better than talking about cancer!

La la la

2010-08-29T08:05:00.004-04:00

At the Michigan Womyn's Music Festival (which I go to every August), there are several Sacred Singing Circles and healing circles throughout the week, at which we sing all kinds of spiritual songs and chants from various cultures. I love most of the songs, but there is one that kind of creeps me out. It's a cheerful, rather cheesy little song:

"Every little cell in my body is happy,
Every little cell in my body is well!
Every little cell in my body is happy,
Every little cell in my body is well!
I'm so glad that every little cell,
every little cell in my body is well!
I'm so glad that every little cell,
every little cell is happy and well!"

I used to sing along to this without even thinking about it. But now... I got to thinking. Cancer is not a disease in which foreign, evil cells infiltrate your body and your immune system has to fight them off. Cancer occurs when your own, formerly normal cells go rogue. These cells ignore all of the "rules" for normal cells, and start multiplying like crazy, get all cocky and think they're immortal, and try to take over your body and thus can kill you. I DON'T WANT TO SING A SONG TO MAKE THESE CELLS HAPPY! But a song that goes "Every little cell in my body except-for-the-cancer-cells is happy" sounds so clunky. How about "Every little cancer cell in my body is unhappy and dying"? Ha, so poetic.

How does it help my health to sing about EVERY LITTLE CELL in my body being happy, when some of the cells in my body FREAKIN SUCK? I don't wanna sing that song and have the cancer cells start cheering and dancing and throwing a party in honor of receiving my support and blessing, sheesh. Where's a song I can sing to make the cancer cells cry and wail and submit to apoptosis? (That's cell death - aPOPtosis. I like to imagine them all going POP! BANG! like balloons).

Stupid song. Stupid cancer.

[And yes, I'm mostly being facetious. You should know by now that unlike a lot of people, I absolutely don't believe that any song I sing, thought I have, mental image I conjure up, or prayer that I pray can really grow or shrink cancer!!!]

Oncology Appt

2010-08-15T10:29:00.003-04:00

I had a great visit with my oncologist on Friday! The best yet! My last appt with her was 2 months ago, and as you may recall, I cried through nearly the whole thing because I was so scared of the Tamoxifen I was about to start taking. I was crying too much to even have a rational conversation.

This time, I was happy and felt great. M tentatively asked how it's going with the Tamoxifen, and had a smile just as big as mine when I reported that I haven't had any problems with it at all - no side effects! No hot flashes, no weird mood stuff, no pain, no nothing! She told me, "That's the best news I've heard all day!", and I was happy to be able to give happy news! And she calmed my one worry, which had been that a lack of side effects indicated that I wasn't metabolizing the Tamoxifen. She assured me that I am, especially when I told her about how my last period was different than it usually is - that's enough of a sign that the Tamoxifen's having an effect on me. I am so thrilled that the Tamoxifen is working, WITHOUT me having to experience horrible side effects.

It was a happy visit. So nice to be chatting and laughing instead of crying. Then M had to examine me - throat, heart, lungs, poke at my armpits, do a breast exam - and she said everything was healthy and great. SOOOOOO happy! And I don't have to go back till January!

Can't Be Healthy on a Sick Planet

2010-08-11T17:26:00.005-04:00

I've been thinking a lot about what it means that I had cancer, despite the fact that I ate a vegetarian-and-mostly-organic diet for the preceding 9 years, never smoked or drank alcohol or did drugs, exercised regularly, got plenty of sleep, had a healthy weight, used only natural bodycare products for years, had a high antioxidant level, was super healthy in general, had plenty of stress-relief methods and was living a conscious/aware life, etc., etc.

I'm tempted to think that if I had such a healthy diet and lifestyle and was still diagnosed with cancer, maybe I wasn't doing ENOUGH and need to do even more. e.g. NO sugar, double the vegetables, double the exercise, take a gazillion supplements, sleep more, meditate for hours, try harder and harder, etc. And I'd have a lot of support/company if this is the viewpoint I chose - the prevention literature, and breast cancer support groups, encourage women to improve their diets & lifestyles to try and prevent cancer. The spiritual/new age social circle I'm in is full of people who believe in responding to cancer with energy healing, inner child work, visualizations, etc.

Another part of me, a BIGGER part of me, thinks that if i had such a healthy diet and lifestyle and was still diagnosed with cancer, maybe the cancer had nothing to do with my diet or lifestyle and was almost entirely caused by environmental toxins I couldn't have done anything to avoid,
since I grew up in a town where the breast cancer rate is 20% higher than the rest of the state, and I can thus cut myself a break. Instead of working even harder to make my diet and lifestyle even more healthy, I could enjoy big ice cream sundaes and all the pleasures I've been denying myself.

I'm trying to find the balance. I'll never know what really caused my cancer and much of it is outside of my control, but I feel like it would be irresponsible of me not to at least TRY to do everything I possibly can to prevent a recurrence, and so, I take 11 daily supplements, obsess over/highly regulate the food I eat, etc.
At the same time, I want to enjoy my life. And I am already so saddened by/frustrated with how many people (both with and without cancer) believe that cancer is self-caused; I don't want to contribute to that. The more I read/research/learn, the more convinced I am that cancer is MOSTLY caused by environmental toxins. (Read Living Downstream: An Ecologist's Personal Investigation of Cancer and the Environment, by Sandra Steingraber!) Thus, it doesn't make sense for me or any woman with breast cancer to beat myself/herself up over eating too many burgers or not exercising enough.
Dammit, I could do TEN PULL-UPS (yes, in a row, from a dead hang, forward-facing grip!) when I was diagnosed, and it's not like if I had only worked a little harder and been able to do 15, then I would have been safe from cancer.

The more energy I spend on trying to follow the health rules even more perfectly, the less energy I'm spending on activism... and I'm at the point where I feel like helping heal the planet is what would really help heal my body, and yours, and everyone's. Cancer's not just a personal problem - it's a societal one. Yes, I can try my best to avoid hormone-laden dairy products, but the hormones shouldn't be in my milk in the first place. Yes, I can buy local, organic apples, but if the receipt I receive at the cash register is printed on paper coated with BPA, it makes no difference that the apple I chose was pesticide-free because it's contaminated now anyway. Yes, I can choose to filter all the water I drink, but if I then shower in that contaminated water, it gets absorbed into my skin anyway. Preventing cancer isn't just a matter of each of us making better choices as individuals or changing our daily behavior. Nothing's really going to change until we lobby the government to study, regulate (better yet, ELIMINATE) carcinogenic chemicals, demand that corporations value people and the planet as much as/more than profit, etc. Yeah, that's a little pie-in-the-sky, I know, but for me personally, it's worth trying for. I have a long history of feeling irrational and extreme guilt and/or responsibility, often for things that aren't even my fault... and that stops NOW. It's not my fault cancer grew in me and I'm not taking responsibility for it. I did everything "right," dammit, and was still dx'd with cancer...because as Dr. David Servan-Schreiber says, "You can't be healthy on a sick planet."

I'm going to begin by doing some Internet research to find out which cash register receipt paper is the safe/non-BPA kind, and then go to every local store I shop at regularly to ask what kind of receipt paper they use. If they use the BPA kind, I will write a letter asking them to switch to the safe kind, and write something succinct about BPA's connections to breast cancer... and I'll try and get other local women with breast cancer to sign the letter.

And then I will reward myself with a big, delicious, ice cream sundae and not feel guilty for it!!!! That's my plan.

MammoGRRRRam

2010-07-27T09:38:00.005-04:00

I haven't written in soooo long. This is partially because the neighbor's wireless Internet connection, which I pay a monthly fee to use because it's the only one I can access from my bedroom, was killed by a lightning strike and I'm now reliant on public wi-fi that's frequently unreliable and has limited hours and is a hassle to get to.

But the bigger reason I haven't been blogging is because GUESS WHAT, I FEEL GREAT!!!! :) There are no cancer updates to give, because the cancer's gone and the treatments are over and I am living my life!!! Life is GOOD!!! (Or rather, my life of course has problems like everyone's does and I'm working on solutions, but the problems are thankfully not CANCER!) I've been on the Tamoxifen for almost 6 weeks now, and despite how incredibly scared I was to begin taking it because I was convinced I'd have all kinds of horrible side effects, I really don't have ANY side effects. I haven't even had a single hot flash! Well, my last period was a little weird, which is probably due to the Tamoxifen (e.g. super heavy for 2 days, then entirely gone for a day, then back, etc), but I can live with that.

I'm so grateful to be feeling so good right now. Now my tasks are to
A) Resume regular exercise (all I really do now is walk a lot - I need my yoga and trapeze back! But it's getting started that's the hardest part, now that it's not habit anymore!)
and
B) Figure out my post-treatment plan, in terms of check-ups/follow-ups/cancer screenings, which I'll need for the rest of my long, long life. The radiation oncologist wants me to see him in 6 months but I'm not going to, because I'm not having any radiation-related problems and I don't want to see him. I have a check-up with my medical oncologist in a couple weeks and will continue seeing her every 3 months for a while, then every 6 months, then once a year, etc., which I don't really mind. We've had a pleasant enough relationship ever since I realized she's not just chemo-obsessed and she realized I'm not a total hippie freak (e.g. we found a middle ground to meet upon). Then I have my 6-month check-up with my surgeon in September, which I'm totally looking forward to. (It would be great if K could just be my "everything" doctor!)

My upcoming visit with K was supposed to include a mammogram but I refused it. Or at least, delayed it. I'm worried about the radiation exposure from mammography, and thus will not automatically submit to the standard, recommended, annual mammogram. If I live to be 100 (and I plan to!), that means having like another SEVENTY mammograms! Geez Louise, that's way too much radiation, especially since I've already had so much, and especially because my breasts are so dense that mammography isn't even all that effective. I'm currently researching mammography more, and mammography alternatives, and compiling a long list of questions for K. At our Sept appt, we can chat about it all, and I'll decide when I would be okay with having a mammogram and how frequently after that. I'm not anti-screening... I'll have as many MRIs, ultrasounds, breast self-exams, clinical breast exams, and thermograms as she wants me to have. But when it comes to mammograms, I am being a Difficult, Non-Compliant Patient for the time being!!!! (Funny how K is my favorite doctor out of all of them, and the one I trust/listen to/go to the most, but I STILL can't simply follow her instructions/recommendations without first researching the crap out of everything myself and over-analyzing and thinking thinking thinking till my brain hurts!!!)

Drill Baby Drill

2010-07-08T23:37:00.006-04:00

I went to the dentist today, to have that temporary crown cemented on FOR THE THIRD TIME, dammit, and to get 2 fillings.

It was not pleasant. But I had them take a picture of me before they started, because I was cracking up at the set-up - they gave me a blanket for my legs because the A/C was cold, a cushy roll for behind my knees, a neck pillow, a protective bib, and purple sunglasses.

I can't decide which was worse, the novacaine and drilling, or my dentist's repeated attempts at a Cancer Conversation. He's a very nice guy and he means well, but really, I am so sick of not only having to go to so many doctor appointments in the first place (I'm being monitored or treated by a medical oncologist, radiation oncologist, surgeon, naturopath, psychotherapist, chiropractor, primary care physician, and dentist), but of having to talk about cancer with each and every one of them, whether cancer is my reason for the appointment or not. It gets so tedious.

This is what made me feel better while I was tired and woozy and dizzy from the novacaine:

And yes, I put on GOBS AND GOBS of sunblock...I looked like a demented clown!

Tamoxifen again

2010-07-01T08:49:00.005-04:00

I found more information about Tamoxifen that makes me feel better about taking it.

The Clinical Journal of Oncology, in 2005, published findings from a study on which patients benefit the most from Tamoxifen. And as it turns out, I fit that profile.

The conclusion states: "Not all ER + pts [patients with tumors sensitive to estrogen] benefited equally from tamoxifen. The largest benefits of tamoxifen were observed with high quantitative ER and low RS [recurrence score/Oncotype dx score], while smaller benefits were observed with low quantitative ER and high RS."

There's a table that shows the information -

Women with LOW Oncotype scores (less than 18) have a 7.2% absolute risk reduction from Tamoxifen (at 10 years out).
Women with INTERMEDIATE Oncotype scores (18-30) have a 17.3% absolute risk reduction.
Women with HIGH scores (over 30) only have a 1.6% absolute risk reduction.

Since my Oncotype score is a 15, at the higher end of the "low risk" category (and called "intermediate" by the National Cancer Institute) and the tumor was also highly ER+ (10 on a scale of 6 to 12), this means that I'm in the group that is likely to benefit the most from Tamoxifen. I was surprised to learn this, because I had thought that since my Oncotype score put me at such "low risk," the Tamoxifen might not even be very important. But it turns out it's the opposite - it's the women who are at high risk for recurrence that don't benefit nearly as much from the Tamox; for them, chemo is what's more important/effective.

What also helped me was a great visit with my naturopath, A, two days ago. She asked about my Tamoxifen decision, and I told her that I'm taking it, but not really feeling good about that. I told her I don't feel like taking it OR not taking it is a "good" decision; that I'm equally scared of the consequences of taking it or not taking it.

A then said that she feels really good about me taking the Tamoxifen, which was such a relief. And I surprised myself by reacting with surprise - I blurted out, "Really??" when she told me that. And I hadn't thought about it consciously, but that made me realize I had subconsciously been wondering/thinking that maybe A, being my NATUROPATH, would be disappointed that I'd chosen to take the Tamoxifen but would continue to help me on my path in spite of that. It was great to learn that she doesn't just "tolerate" my Tamoxifen decision - she supports it. She was excitedly telling me about studies that show that patients taking Tamoxifen PLUS the supplements I'm taking (some of them, anyway!) do even better than patients taking just Tamoxifen. I was happy to know that her position is "Tamoxifen and [your supplements] work really well together!", not "If you're determined to take the Tamoxifen, these supplements can at least help you counteract the evilness of it." I'm feeling much more at peace about my decision now.

I love it that A is truly integrative. She's one of the few people not trying to get me to choose either conventional medicine or alternative medicine and shun the other, and I so appreciate that. She also told me that I'm in that "narrow window" of patients who tend to be most successful in overcoming cancer, in the sense that I am not too rigid in either direction - I'm neither a person who is so dogmatic about natural health that they won't even consider the conventional therapies, nor am I a person who goes on smoking and drinking and continuing a mainstream lifestyle despite evidence of its harms....I'm open, but with a healthy skepticism, which is the most helpful way to be. All of that was so great to hear. She did add, however, that while it's great that I can look at things from all angles and see all the possibilities, it's not helpful if I get too caught up in this and can't find inner peace with my decisions because of it, etc.

Sort of related to that, A thinks I need to relax a bit. :) One suggestion was to get off the computer for a bit, stop the endless researching "and reading books like this" (she said while gesturing to a stack of cancer books in her office), "and read a novel! Do you like novels?"

Oh dear. I hadn't told her about my current stack of books, but maybe she's psychic. Because she's right - I just finished reading "Brightsided: How the Relentless Promotion of Positive Thinking Has Undermined America," by Barbara Ehrenreich, and now I'm currently reading:

"Final Exam: A Surgeon's Reflections on Mortality," by Pauline Chen
"Living Downstream: An Ecologist Looks at Cancer and the Environment," by Sandra Steingraber
"Life Inc: How the World Became a Corporation and How to Take it Back," by Douglas Rushkoff
"The Vegetarian Myth: Food, Justice, and Sustainability," by Lierre Keith

So, yeah. Anyone have suggestions for relaxing novels I should be reading? ;)

Recurrence Risk

2010-06-28T08:45:00.005-04:00

You know, every time I think/post "I don't have much to say that's cancer-related right now," I really DO. (And from talking with other cancer survivors, I know this is normal/common.)

Two nights ago, I was up till the wee hours of the morning, deconstructing my pathology report, MRI report, and mammography reports, Googling every word I did not understand. I wanted a clearer picture of what my recurrence risk is. I’m mainly skeptical of the Tamoxifen because I don’t believe my risk of recurrence is high enough to warrant it. I feel so sure that I won’t get cancer again no matter WHAT, so why deal with the risks of Tamoxifen?

I guess two nights ago I was taking the opposite approach – trying to find information that would convince me my recurrence risk IS high enough to make the Tamoxifen worth it. Why am I so sure I can’t possibly have a recurrence? I was “so sure” I couldn’t possibly have cancer in the first place.

So here are all the facts as I know them.

I had two types of breast cancer at once:

A mucinous tumor, Stage 1, Grade 2 – 1.5 cm at its greatest diameter. Mucinous is a "good" kind of cancer to have if you have to have cancer, because it's so slow-growing/non-agressive. But it's really strange that I had it at age 30, when it's most commonly found in post-menopausal women over 60. In fact, I was the youngest patient my surgeon has had with mucinous cancer and she only sees about 5 patients with it each year. So it's hard to say what all that means. And the fact that it was Grade 2 means it wasn't the slowest of the slow.
An area of DCIS - approximately 3 cm. All DCIS is Stage 0, but mine was also Grade 2. Ductal Carcinoma In Situ is non-invasive cancer that does not (or at least, has not YET) spread beyond the duct that it is in. Some DCIS will never become invasive cancer, but doctors can't yet accurately predict which women's DCIS will become invasive and which won't, so DCIS is often overtreated because the risks of not treating it are just too high. Having DCIS increases one's risk of developing invasive cancer but it's hard to say by how much.

My Scarff-Bloom Richardson (SBR) score was a 6, on a scale of 3 to 9. A score of 3 to 5 = low grade, 6 or 7 = intermediate grade, and 8 or 9 = high grade. The SBR score takes into account 3 things: rate of cell division, percentage of cancer comprised of tubular structures, and cell changes/how similar the cancer cells are to normal cells. So, while less than 10% of my cancer was tubular (the higher percentage, the better), and the cells showed a "moderate" increase in size and variation (as compared to normal cells), cell division was slow. These 3 factors combined made the cancer "intermediate grade." That puts me in an annoying gray zone.

Something else that puts me in the annoying gray zone is my Oncotype score of 15. Oncotype dx is a test that analyzes 21 different genes from your tumor and uses that information to predict how likely you are to have a recurrence in the next 10 years. The creators of the test say that any score under 18 = "low risk," so low that you don't need chemo and/or chemo would be ineffective or not effective enough to make the risks worth the benefit. My score of 15 translates to a 10% risk of relapse in the next ten years IF I TAKE 5 YEARS OF TAMOXIFEN, otherwise the risk is higher. (Oncotype dx does not predict what your recurrence risk is if you take no Tamoxifen.) However, the National Cancer Institute disagrees with the Oncotype people and says that only scores below 11 are considered low risk, and that my score of 15 would actually put me in the intermediate risk category. In fact, that clinical trial that I signed up for was designed specifically to study those of us in the intermediate category, to see if chemo + Tamoxifen is a better treatment than just Tamoxifen. I had a 50/50 chance of being randomly chosen for the chemo category.

To me, what all of this says is I might be low risk, I might be intermediate risk, it depends who you ask, and it's kind of a toss-up. My risk of recurrence EVEN IF I TAKE ALL THE TAMOXIFEN is 10%, which is greater than my risk of having had cancer in the first place.

I also have fibrocystic "disease" (it's not really) with adenosis, stromal fibrosis, and atypical ductal hyperplasia. (A mouthful, geez!) This is a non-cancerous condition, but it's a higher risk marker. It's "pre-DCIS," ridiculous as that sounds. Pre-pre-invasive cancer. Hyperplasia = overproduction of cells, atypical = they're abnormal in some way, ductal = it's the cells in my milk ducts that we're talking about. Adenosis = those abnormal cells are also in my breast's lobules. I'm still not quite sure what stromal fibrosis is, but it's something similar - breast cells doing stuff they're not really supposed to. Lots of info here .

I have heterogeneously dense breasts. The denser one's breasts are, the higher one's risk of breast cancer. Check out Am I Dense for info . There's a lot of buzz right now about how dense breasts are an underappreciated risk marker for breast cancer...that is, the medical world seems to have known for a long time that dense breasts are a risk factor and that mammograms are often ineffective with dense breasts, but few doctors A) tell their patients about their breast density or B) use screening methods other than mammograms. I have to research this more, but anyway, I do have very dense breasts (about a 3 on a scale of 1-4, according to the info found in my MRI/mammo/path reports), and the doctors did tell me that, and that it's a higher risk marker for cancer.

I'm not exactly sure what I think of all of this information together means, but I had to put it all together like that so I'm rightfully focused on what's going on in MY breasts, not those of the women whose stories I stupidly keep reading on the Internet. There are so many stories at both extremes - women who say, "OH, the oncologist told me to take Tamoxifen but I knew I didn't need it and threw it out and just take green tea instead," as well as women who say that their cancer was so tiny/early their oncologist didn't even recommend chemo and just put them on Tamoxifen, but even WITH Tamoxifen, they had a recurrence 2 years later and are now at Stage IV. That woman said, to those of us who are all freaking out about not wanting Tamoxifen, "Tamoxifen side effects are better than Stage IV cancer." That has stuck in my brain.

But I can't let these other women's stories carry too much weight for me, because everyone's cancer is SO DIFFERENT. Before I was dx'd, I was so clueless about EVERYTHING - I didn't know the difference between radiation and chemo (I kinda thought they were the same thing and radiation's what made you lose your hair); and I never even distinguished between the nipple and areola, nevermind knew anything about milk ducts and lobules; and I didn't know that there was so much variation amongst the types of breast cancer. I thought breast cancer was just breast cancer.

It doesn't help me to compare my own situation to other women's and second-guess my decisions based on theirs, because I AM THE ONLY ONE who was a 30-year-old woman with a stage 1 grade 2 mucinous tumor, grade 2 DCIS, heterogeneously dense breasts, and atypical ductal hyperplasia with adenosis and stomal fibrosis.

I wonder if I will ever be at peace with my Tamoxifen decision, instead of continuing to anxiously analyze it from a million different angles. Right now I'm feeling like I have a greater understanding that yes, I DO have high(er) risk factors that might just make the Tamoxifen worth it. There's a lot of activity going on in my breasts that the Tamoxifen will hopefully calm down.

Long overdue update

2010-06-23T08:03:00.002-04:00

It's been pointed out to me that I haven't updated in a long time!

Briefly:
My check-up with the radiation oncologist went really well, mostly because HE was out of the office that day and had a female rad onc filling in for him, whew!! So much easier for me. And she was super impressed with my healing, said everything's great, and if it weren't for the incision scar, she wouldn't even be able to tell which breast was treated. WOOHOO! (There's still swelling, which had worried me - shouldn't a breast that's had tissue removed 3 times be smaller, not bigger?? - but she said it's normal and it may just take a few more months to go down. So, I'm cool with that!)

I'm also on day 7 of Tamoxifen with no problems. Taking the first one was the hardest - I cried about it. I've heard that it takes a few weeks for side effects to show up, if you're going to have side effects at all... and maybe I'm one of the lucky people who won't! Although, I think hot flashes will pretty much be a given. We'll see.

So that's why there haven't been updates - I'm doing really well. My "struggle" now is with how to get back to "normal life" - new normal, whatever. Cancer treatment was intense and foregrounded in my life for 6 months, but now that's over. I don't want to be so focused on it. But it's weird, I still read the breast cancer message boards several times a day, totally just out of habit, because it's what I did for months. I don't want to be that immersed in Cancer Land, and I don't want to be blogging about stuff in a Cancer Blog so frequently... but at the same time, it's not like everything's just "over" and I can throw a party and get on with my life. Not when I'm taking a DAILY anti-cancer pill, and will be having regular check-ups with various doctors for years (if not forever?!), and mammograms and MRIs and all of that. And I have made, and continue to make, big changes in my life with the goal of making sure the cancer stays in remission for the rest of my life. (Add the usual disclaimer about how I know nothing can guarantee that, blah blah). Changes such as improving my diet (it's an on-going process) in specifically anti-cancer ways, being very conscious of my work life, going to therapy weekly to process emotions and past traumas, detaching from stressful relationships that no longer serve me, etc. It's all good stuff, stuff that would be good for its own sake, not just as "recurrence prevention."

I'm not sure what that means for this blog - that cancer is much, much less of a focus of my life now that treatment is over, but not something I can leave behind/ignore entirely. I'm trying to find the balance. I'm not sure if I will end up only sporadically coming to post here if/when I'm having issues with cancer stuff (e.g. Tamoxifen side effects, or doctor appointments that I need to ramble about), or if I should try and turn this into a more general blog about my life, and write about lots of stuff that's not cancer-related. But it IS called Britta's Boob Blog, not Britta's All-Encompassing Blog. Hmm.

See, this is why I haven't been blogging - I'm just not sure how to do it right now! I feel like I should be "updating regularly" as "usual," but... I don't want to write about cancer stuff when I'm not thinking about/dealing with cancer stuff just for the sake of having new content for my blog... you know?

Miscommunications

2010-06-08T10:11:00.005-04:00

The other day, I think I mistakenly gave an acquaintance the impression I'm dying.

The parade was about to start in a few minutes, so we were both kind of rushing around trying to get ready for it, and stopped very briefly to do the whole "Hi, how are you" thing. She asked what's next for treatment, and I told her I'm starting Tamoxifen soon, which I'm really not looking forward to. Then I think she asked if there are bad side effects, and I said something like, "Yeah, and the prescription is for FIVE YEARS... I doubt I'll last that long!!" I totally meant "I doubt I'll be able to handle taking the Tamoxifen for that long and will stop taking it before the 5 years is up," but I worded it ALL wrong because we were in a rush and she must have thought I meant that I'm expecting to be dead in 5 years, because she immediately gave me the biggest hug. Oh noooo! I hastily added some random babble about "No, no, my prognosis is great!" but I don't think that made sense either and we both had to rush off anyway.

Now I'm feeling like a jerk for unintentionally making someone think I'm dying!!! Reality is, I am soooo healthy and full of life right now and Tamoxifen or NO Tamoxifen, I'm not going to DIE from breast cancer.

Ironically, I unthinkingly wore this T-shirt later in the day -

To me it's sort of a statement against the cancer - I love how the words go RIGHT across my breasts. :)

Now I'm wondering, should I email this woman to clear up the miscommunication and assure her I'm not dying?!? I don't want her to think I am! But actually emailing her about it seems even more awkward and weird! "Hi, I'm sorry, I'm really not dying!" Oh, geez...

Love my Life!

2010-06-06T23:35:00.002-04:00

Me and Ruby, getting ready for the parade!!

Tamoxifobia

2010-06-06T21:37:00.005-04:00

So, the visit with my oncologist did not go so well. I pretty much cried through the whole thing, which is unfortunate, because it made it difficult to have a rational conversation and get my questions answered - or even asked.

I picked up the prescription, but it's still sitting in my car - I can't even bring myself to bring it in the house yet, nevermind my body. I got permission from my onc to wait until June 17 to start taking it, which is the day after my post-radiation thermogram. I figured if I was already taking the Tamox at the time of the post-radiation thermogram, we wouldn't know if the results of it were due to the absence of radiation or the presence of Tamox. But maybe I'm just thinking up stall tactics.

I cried over the Tamox for a while on Friday, but once I stopped thinking about it and talking about it and totally blocked it from mind, I returned to my HAPPY, HAPPY LIFE.

This is how I spent my weekend -

Partying it up, literally dancing in the streets, with all "my people." I feel so happy, healthy, strong, ALIVE!!! I don't want the Tamoxifen to ruin this!!!

I think I'm developing a Tamoxifen phobia, and probably it won't be nearly as bad as I'm fearing. I've decided to try it for 6 months. If the side effects are unbearable and not decreasing, I'll stop taking it.

The main problem is that I'm not comfortable with my decision. I'm EQUALLY afraid of the consequences of taking the Tamoxifen, as I am of the consequences of not taking it. I have heard so much conflicting information about Tamox that it's overwhelming. For every story of a woman who went through Hell with Tamox and found health only after she quit it in favor of succesful alternative treatments, there is a story of a woman who said no thanks to Tamox and did alternative treatments and got a nasty recurrence of cancer. There are people I trust who think it's extremely important for me to take it, and people I trust who think I'm putting myself in danger by taking it. Bad things can happen if I take it, and bad things can happen if I don't. And I really, really JUST DON'T KNOW what would be right for me.

So I'm just going to try it. I'm not making this decision because I genuinely feel it's the best one, but because I'm so freakin tired of endlessly reading, researching, questioning, weighing my options, ad nauseum and needed to JUST CHOOSE. I'm at the point where I feel like the paralysis of indecision was worse than either choice could be.

Mocha :)

2010-06-05T22:42:00.004-04:00

You know how I gave up sugar in January? The cravings stopped after a couple of weeks, and now it's been 5 months and I really and truly do not miss all of the cookies, sundaes, brownies, sugar-y drinks, pie, etc. But the hardest thing for me to give up was my mochas... so I decided to allow myself two mochas per year: one on the day of the Strolling of the Heifers parade (which also happens to be the anniversary of when I had my first mocha ever), and one in January, for my birthday.

TODAY WAS THE DAY! The first mocha I'd had in 5 months! S and I went to Coffee Country at 8 am, and I giddily ordered my double iced mocha with whipped cream.

It was so beautiful and amazing, the most delicious mocha ever. I spent a good 40 minutes drinking it, savoring every sip. So heavenly. I'd been looking forward to this mocha for weeks...the anticipation made it even better.

And I'm happily surprised to discover that I'm not even craving another. I thoroughly enjoyed the one I had, but now I'm looking forward to how amazing my 2nd annual mocha is going to taste in January, when I've waited 7 months for it!

I was worried that the person making my mocha today would be a newly-hired employee in training, and it wouldn't taste right... but thankfully, my mocha was made by the owner of Coffee Country herself, and she makes damn good mochas. I thanked her at least 3 times and explained that it was my first mocha since January, and she smiled, but still, I don't think she understood the enormity of the event to me.

I'm so grateful. Isn't it so beautiful? Look how it glows in the sunbeam -

F*ck

2010-06-02T16:02:00.002-04:00

oh, god. hearing my awesome CRT results makes me not want to take tamoxifen. my body is doing sooooo well right now...i'm scared that the tamoxifen (with its side effects) is just going to fuck it all up, and for WHAT?? it's only worth it if i'm actually in serious danger of the cancer coming back, and i really don't feel like i am. this past month has been so great - the first time in HALF A YEAR that i could just be happy and live my life, instead of having to deal with one stupid cancer treatment after another. but now it feels like, "okay, vacation's over," because in 14 hours, i'm meeting with my oncologist and she's going to give me the tamoxifen prescription, and i'm back to taking a stupid anti-cancer pill every day. i hate not knowing what the tamoxifen will be like - e.g. whether i'd feel just fine, or if there would be all kinds of horrible side effects.

i'm feeling scared of the unknown, and resistant, and really ANGRY. not at my oncologist, just the situation.

please don't tell me to take the tamoxifen and don't tell me not to take it. i don't want opinions and advice about that, because i'm overwhelmed by too much already. i'm just venting, because this is the place where i can do that.

CRT results

2010-06-02T14:49:00.004-04:00

Today I had an appt with a doctor at the multidisciplinary holistic health clinic to go over the results of my CRTs (thermograms), one before radiation and one during. These thermograms tested 80 different points on my body from the waist up, to provide a picture of my overall health.

In a nutshell: MY BODY IS AWESOME!!! :)

I'm still waiting for them to provide me with a written interpretation of the results, because right now I only have the printout of the report, which says things like "CI 3.9" (I made that up), and this doctor tells me, "That's really good!!", but that's not helpful if I've already forgotten what the CI stands for or what the 3.9 is on a scale of, you know??

Anyway, what she told me, basically, is that nearly all of the tested parts of my body are functioning very well. My gut/digestive system ("deep immunity") is great, although my lymphatic system ("surface immunity") was stressed during radiation. That's not really a bad thing - it was not shut down or malfunctioning, it was simply working really hard and thus needs a boost, which makes SENSE, given the context. My body's vitality and "chaos index" (i.e. ability to respond appropriately to stressors) are great. I don't fully understand this part, but something else the CRT tested is "tumor terrain" (?), something about checking for areas where you may be in danger of abnormal cell growth, and my scores were GOOD in both thermograms! I'm in the normal/healthy range! The functioning of my breasts was good, too, and there was only a SLIGHT difference (drop) during radiation!

Apparently, when my naturopath first saw the comparison between the two thermograms and saw that much of my body was in "hyperdrive" at the time of the second CRT (during radiation), she got a bit worried...but she told me she doesn't have much experience interpreting CRTs, and that's why I had a separate appt with another doctor today, who DOES have experience with CRT interpretation. And her explanation was that yes, my body was working extra hard to deal with the unexpected assault of radiation, but in a GOOD way - an organized and appropriate way, as opposed to just shutting down or getting confused.

LOL, I'm very inarticulate about it all and don't know the correct terms for everything, but you get the gist! I'm trying to think of an analogy. Okay. If you're running around a track and suddenly there's a hurdle in front of you, you JUMP OVER IT and keep running. Jumping over the hurdle takes work but it's the correct response. WRONG response would be to, say, stop running, lie down on the track and cry... or to hop around the hurdle on one foot three and a half times while singing Twinkle Twinkle Little Star.

What the CRT showed was that, hell yeah, radiation was a hurdle for my body and responding to it took a lot of work, but my healthy body DID jump over that hurdle and keep on running. It did not lie down and cry, nor did it freak out and go apeshit!

I LLLOOOOVVEE my super smart, hard-working, healthy body! My body knows what it's doing! And I'm gonna keep sending it love and feeding it healthy things and moving it in ways that it likes and giving it all the rest it needs so it can JUST KEEP DOING ITS THING!!

EW

2010-06-01T18:06:00.006-04:00

I just bought a can of wild caught, all natural, on sale SARDINES. Dr. David says they're very anti-cancer, and the least polluted of fish because they're so small. They are full of omega-3, calcium, phosphorus, iron, potassium, protein, B12, selenium, and vitamin D.

AND THEY ARE FREAKIN DISGUSTING. Okay, so I haven't tried one yet. But I OPENED THE CAN! People EAT these?! Do you have to...like...skin them or something first?? The package says they are "delicious meaty portions cleaned and scaled." Do you not have to cook sardines that come in a can? They're already cooked? There are no cooking instructions on the package, so you really just PICK ONE UP AND EAT IT??

I have to Google "eating sardines," apparently. Have any of you eaten a sardine? What's it like? Oh, geez. The stupid can doesn't close now that I've opened it, so I have to eat these things before they stink up the house. Right now the can is sitting on a shelf near the computer. I'm just looking at it. From a distance.

UPDATE: Okay, now it's the following afternoon. After lots of reading about sardines via Google last night, and staring skeptically at the sardines, I did try them!! I discovered that while they taste really good to me - similar to tuna, maybe a little saltier - the look and feel is what grosses me out. The blotchy browns and grays, the weird stringy things inside if you pick at them too much, the itty bitty SPINES, ugh... But they are so freakin healthy I want to like them and eat them! I got some great advice and tips from my Facebook friends on how to make them more appetizing, and, SUCCESS! I just had a delicious lunch of a sardine sandwich on whole wheat sourdough bread. I mashed the sardines up with Goddess dressing (contains turmeric and black pepper - also very anti-cancer) and nutritional yeast, and pretended like it was a tuna sandwich, and it was awesome.

I'm now officially recommending sardines. :)

Anesthesia

2010-05-31T13:28:00.005-04:00

I was cleaning my room/unpacking, and found a journal entry I wrote when I was 15, about what it was like going under anesthesia to get my wisdom teeth (and 5 others) removed. It's SO WEIRD! I thought I would type it up and share. Here's the whole thing, unedited.

----

"Okay, Gabrielle. We're going to put this mask over your nose now." She got my name wrong. [Gabrielle is my middle name]. The mask was put over my nose. "Take deep breaths." I did. for a minute, a strawberry-cherry vapor filled my nostrils and throat. I breathed slowly and tryed [sic] to relax like they had told me. Then a new substance filled my lungs. They told me to let them know when I got a buzz on my forehead. After a few seconds, I closed my eyes. It hurt to keep them open. I quickly re-opened them, though, so they wouldn't think I had already gone under. I stared straight up, at the big blue light above me. It seemed to get farther away, and my ears started to ring. It was a scary feeling, and the only way I showed the fear was my eyes. They widened and darted furiously around. I felt trapped. I closed my eyes briefly, blinking longer each time. I pointed to my forehead, indicating the 'buzz.' I closed my eyes, and everything changed. I no longer saw, heard, or was aware of the operating room or doctors. I saw nothing but blue, red, and yellow dots forming triangles so close together that it was just a greyish mass. I could sense a very cold, robot-like voice near me. "Breath. [sic]. Deep. Breathe. Deep." Instead of getting dizzy and spinning in circles [??], there were triangles. Big triangles, made of the colored dots. I watched them as they traced the shape, beeping mechanically, then they shrunk to about one fourth of the size, all smushed into one shape. The beeping became louder, and almost audible [??], but more like sensed, the letters RGM were repeated over and over in the mechanical voice, blaring inside my head. The G espesially [sic] was emphasized, and I tryed [sic] to figure out why. Since I focused on the one letter, one of the 3 points of the triangle, the triangle became one single black dot, throbbing at great speed, beeping louder than ever. The coldness, harshness, of it all was almost unbearible [sic], and I acutely remember thinking: 'I am under anesthesia. I can tell that I am, and I'm not supposed to remember it. I hear nothing, see nothing, feel nothing psyically [sic], yet I am aware that I am unconscious.' It was such a weird feeling, and I hoped desperately the feeling would leave soon.
That is the very last thing I remember before I woke up in the recovery room.

---

GEEZ!! That was a scary (and bizarre as hell!) experience that lasted for several minutes. I have NO IDEA what's up with the "RGM" and beeping triangles weirdness...and my writing is rather incoherent at times, making me wonder when, exactly, I wrote this - in the freakin recovery room?? Ha!!

Considering that was my one and only experience with anesthesia, I'm surprised I let myself go through it again this winter for breast surgery! Or rather, I'm surprised I wasn't the least bit scared of it. To the contrary - after my lumpectomy, K told my family I went under "giggling like a little girl." And I don't AT ALL remember the process of losing consciousness. All I remember is: K asked what kind of music I wanted to listen to, I thought that was hilarious and told her, "I'm not going to be awake to hear music!", and my giggling made the anesthesiologist exclaim in surprise, "I haven't even given her anything yet!" I vaguely remember K's smiling eyes, despite her face being cluttered with the necessary protective gear (that ridiculous poofy cap and face shield), and that's IT. Next thing I knew, I was waking up in recovery. I think it really helped to have IV anesthesia instead of that scary mask with the "strawberry-cherry vapor" - ugh!! I think they used that (when I was 15) because I was terrified of needles, but jesus christ, I would have preferred the temporary pain of a needle insertion, if it meant not spending several minutes aware of the process of going unconscious. It was like drowning, or like being blind and deaf and paralyzed all at once. SO SCARY.

It's so strange that surgery to get a few teeth pulled was scarier than surgery to have a cancerous tumor removed from my body. And it's so strange that for a few weeks in December-ish while I was waiting for surgery, my sprained pinky finger was way more painful, bothersome, and life-interrupting than the CANCEROUS TUMOR was. I never had a single symptom of the cancer...no way of knowing it was there, other than doctors telling me so. This is still so weird when I think about it. It's the only time I've had to undergo extensive, intense, uncomfortable medical treatments for a health problem that was simultaneously the worst health problem I've ever had and one I did not feel at all. It's not like having a really painful sore throat, getting dx'd with strep, taking the antibiotics, and then feeling the pain go away and knowing you're better. It's not like having coughing fits that kept me up at night for months, getting dx'd with asthma, treating the asthma with a combination of inhalers and alternative medicine, then stopping coughing and sleeping soundly once more. I didn't know I had cancer, and couldn't feel the cancer, and then spent a month and a half getting irradiated, which I also could not feel, and now I'm cancer-free, but it all feels so unreal, like I either possibly still have cancer or never had it at all, because either way, I CAN'T TELL! Does that make sense?? It sounds awful to say this, but I almost wish the cancer had been accompanied by at least one symptom*, so that the cancer treatments could have eliminated the symptom, and I'd thus have something to hold on to - I could believe both the reality of the cancer in my body and its elimination. Because right now it's feeling like... 'cancer? Really? REALLY?!'

*Edited to add: the lump was a symptom, duh. And I could feel it when I poked at my breast, and yeah, surgery removed it...so THAT was a clear distinction between cancer's presence and absence which I could understand. But the little lump never hurt me/bothered me so it was still hard to understand in that regard, and it was even harder to understand the whole invisible-radiation-killing-invisible-cancer-that-might-not-even-be-there thing.

Anti-cancer weekend :)

2010-05-30T23:03:00.004-04:00

Tamoxifen in 5 days, but I'm not thinking about that right now.

I have had a WONDERFUL weekend, and a very ANTI-CANCER weekend! :)

I've been re-reading Dr. David Servan-Schrieber's Anti-Cancer. I think I should read this book on a regular basis, because it's so uplifting and inspiring. Every time I read even a little part of it, my determination to make my body's terrain totally unwelcoming to cancer is reaffirmed and increased and I get a little more excited by how truly possible this IS. Also, re-reading it reminds me of details I had forgotten.

Dr. David says that these are the good things to be doing:

* Eating a healthy anti-cancer diet
What I ate (just yesterday and today) included the following:

-2 bags of frozen cauliflower (contains sulforaphane and indole-3-carbinols - anticancer molecules)
-1 bag of frozen sweet potato ("a study that tracked breast cancer patients for six years showed that those who consumed the most foods rich in carotenoids lived longer than those who consumed less." p. 136)
-1 bag of frozen strawberries (ellagic acid and polyphenols stimulate mechanisms of elimination of carcinogens)
-1 clove garlic (sulfur compounds promote apoptosis - cell death - in breast cancer)
-1 can of grapefruit (anti-inflammatory flavonoids)
-a few cups of nettles infusion (nourishes every system of the body)
-1/3 of a bar of 85% dark chocolate (antioxidants, proanthocyanidins, and polyphenols slow the growth of cancer cells and limit angiogenesis.)

And I had all of the following supplements each day:
-3 dropperfuls of green tea extract (facilitates death of cancer cells, rich in polyphenols)
-4 Juice Plus capsules (concentrated fruits & veggies)
-1 Turmeric capsule ("the most powerful natural anti-inflammatory identified today." p. 134. also stimulates apoptosis in cancer cells)
-20 mg melatonin (slows breast cancer growth by reducing linoleic acid)
-2000 IU vitamin D (stimulates apoptosis in cancer cells, increases healthy cells)
-3 digestive enzymes capsules (so my body can actually assimilate all the good stuff I'm eating!)
-2 fish oil/omega-3 capsules (reduces inflammation, reduces cancer cell growth)
-2 T ground flax seeds (phytoestrogens, flushes estrogen out of the body, acts like Tamoxifen)

* Avoiding products containing industrial chemicals whenever possible
This weekend, like every day, I used all-natural, paraben-free shampoo, soap, deodorant, and toothpaste. Today I bought and used Badger Balm sunblock, the 2nd best/healthiest sunblock, according to the Environmental Working Group's 2010 report. I drank filtered water out of glass and ceramic containers.

* 20-30 mins of physical activity each day, minimum
I did some pull-ups, and I walked for an hour yesterday and another hour today. I did not use my car at ALL, and thus helped take care of the Earth as well as myself.

* Sunlight for 20 mins per day (vitamin D)
I spent at least 2 hours walking in the sun, and 90 minutes at the river with friends. I got plenty of vitamin D and then put on sunblock so I wouldn't get burned!

* Regularly practicing a method of self-centering and relaxation
I spent time in nature, wandering around the cemetery and taking photos of my favorite statues, like this:

* Accepting yourself and your emotions, and getting support from family and friends
I journaled, and processed emotions in long emails to a friend. I spent a lot of GREAT time with friends this weekend... we had brunch, and went swimming at the rock river. I said thank you prayers, and slept a lot, and spent the first hour that I was awake this morning just lying in bed and thinking happy thoughts.

And I was SO SO HAPPY with my hair!!! :)

haircut

2010-05-28T20:15:00.004-04:00

I got a haircut today. It was very freeing! I did it to donate my hair to Matter of Trust, the organization that uses human and pet hair to make mats and booms that help clean up the oil spill. I've been feeling so grief-stricken and helpless in response to the oil spill, and was glad to discover that I could at least donate my hair.

I've never had hair this short before. I gave the stylist free reign to do whatever she wanted with my hair, with my only criteria being that I wanted to donate as much hair as possible without looking like I'd been through chemo. :) While she was cutting my hair, I sent love and metta to the dolphins, whales, seaweed, shrimp, plankton, sharks, turtles, manatees, lobsters, scallops, horseshoe crabs, sand crabs, mussels, swordfish, coral reefs...

A Good Day

2010-05-20T21:31:00.002-04:00

Okay, on to happier things!! Today was a really, really good day.

I slept in, then had a yummy breakfast of cottage cheese, Green Goddess juice/smoothie, and coffee, while watching an episode of Gray's Anatomy.

I put on my happy, rainbow-striped tank top and shorts, because it was EIGHTY DEGREES AND SUNNY :D, and went downtown.

I had a wonderfully productive therapy session.

I went to the post office, and found a nice paycheck in my box.

When I came out of the post office, there was my good friend B, right there on the sidewalk, whom I hadn't hang out with in over two months and had missed so much. And it turns out her afternoon work was canceled, so we'd have time to hang out! My friend A waved to me from down the sidewalk while B and I were walking.

I got some great exercise walking all around town doing errands. I sold another stack of DVDs to the used DVD store, enough to pay for another month and a half of Netflix.

I went to the Co op and got a delicious nut shake for lunch (hazelnuts, banana, maple syrup, rice milk), and ran into friends to chat with.

I got back to my car only one minute after my parking expired and had no ticket on the windshield, whew!

I went home and did some work on the meeting minutes, which went surprisingly well.

I walked back downtown, and spent the walk chatting on the phone with a family I used to work with and hadn't seen for a while, to see how they're doing and they sounded great and told me all about the funny circus show they went to yesterday.

Also while walking, I left a voicemail for my friend SS, in an attempt to make plans to hang out soon.

I met B at Coffee Country and we had yummy iced coffee drinks and sat at a table outside and caught up on everything! We saw and waved to our friend D and her daughter R as they passed by.

B walked me partway home then continued on down the street to the circus school, while I dashed home to throw on a unitard. Then I went to the circus school, too. There were so many friendly faces to say hello to.

I had a wonderful time in the 90-min trapeze class that B and SR taught! It was a small class, fun and low-key. I noticed differences in my body (e.g. my left chest and armpit feel really tight, because of scar tissue and radiation), but going back to trapeze wasn't difficult like I had worried it would be and my body felt really good back on the bar.

I came home, and had a great chat with C (my friend/housemate!) while cooking my dinner. I made well-boiled/mushed broccoli and mixed it with cream of rice cereal, goat cheese, and coconut oil, which gave me a meal that my teeth could handle AND included vegetables, grains, fat, and protein, all at once.

I watched another episode of Gray's Anatomy while eating my dinner, which was surprisingly tasty, and a square of 85% dark chocolate.

Now I will try and take my melatonin and go to sleep before midnight, so I can wake up early for the Airport Advisory Committee meeting that I'm the minute-taker for.

And I will have happy dreams, at the end of this happy day. :) Today was a perfect blend of everything - social time, alone time, exercise, outdoor time (gorgeous weather!), self-care (therapy), nourishing food, a little bit of work, and a true sense of community. I love it that I not only spent planned time with friends, but bumped into so many other friends while out and about downtown. That's why I love living here - there are friends around every corner. I used to think that community like this only existed on TV shows!

I F'ing Give Up

2010-05-18T12:46:00.005-04:00

You know that tooth I just got crowned less than a month ago? IT JUST CRACKED. I'm 31 years old and have had 5 root canals and an extraction, and now this tooth just cracked for the third time in a year. I f'ing give up. I brush, floss, use xylitol, sleep with a mouth guard, and stopped eating sugar 4 months ago. I don't know what more to do than stop chewing food. How the F else can I make my teeth last for the several decades that they are supposed to? I'm THIRTY ONE FREAKIN YEARS OLD. I'm just going to eat things like hummus, yogurt, applesauce, soup, refried beans, and smoothies from here on out. No more chewing. This is insane.

Last year when my tooth cracked and I went for 3 or 4 weeks without eating solid food (e.g. used my immersion blender on all of the foods I ate), I unintentionally lost over 10 pounds and that's not good. I'm a healthy weight now and will be underweight if I lose, and I don't want or need to lose weight. I need to have a plan for how to do this better than last time. Any ideas? I am looking for foods that do not need to be chewed, and don't have sugar, meat, soy, artificial ingredients, or a lot of processing. And they also need to have enough protein and fat to help me maintain a healthy weight.

My list so far:

Fruits & Veg: applesauce, mashed avocados, mashed bananas, smoothies, mashed sweet potatoes, those Indian sauces/veggies/meals in a box
Protein: refried beans, hummus (?? does this have protein?), yogurt, PB, scrambled eggs, some kind of salmon that's really soft?
Grains: oatmeal, grits, cream of wheat...?
Etc: chia seeds added to things provide lots of nutrients, coconut oil adds fat, soup combines everything, nettles and chickweed tea are full of nutrients...

What else is there? How do I do this?

Ramblings

2010-05-17T18:58:00.006-04:00

It's been a week since I last blogged, so I'm feeling like I should write something here, but I'm not sure what to say.

My fatigue has decreased - I can stay up late again, and sometimes I now only sleep for 7.5 or 8 hours, instead of 9! This weekend, I was exhausted, but that was due to working 27 hours in 3 days. (Which I know is normal to so many people, but not to ME, at this point in my life.) So of COURSE I was tired from that! But I could definitely feel that it was the 'overworked' fatigue, which is familiar to me, not the heavy fatigue from radiation. I can say with confidence that I'm healing very well from the radiation! My skin is now tan instead of pink/burned, and rather splotchy because it's peeling. I'm still using lots of aloe. And it doesn't hurt!

I worked too much this weekend. I just started this new job that's 19 hours one weekend per month, and in theory, this is great for me, because my other work is usually only on weekdays so I am not overtaxed by this set-up. I like the work, and I like being able to earn a big chunk of money in just one weekend and then having all of my other weekends free! But this weekend I took on an extra assignment from my other job, too, and also spent my "break" helping my former roommate clean our former apartment to increase the chances of my former landlord giving me at least some of my security deposit money back. So, combined, it was TOO MUCH for one weekend!!! But the fact that I was even able to do it showed me that I really have recovered from radiation, woohoo!

This morning, I slept in, and then, to reward myself for getting through my marathon weekend of work, I took myself out for brunch! I went ALL OUT! I had a spinach/onion/mushroom/cheese omelet with sour cream and olives, hash browns, sunflower wheat toast, a short stack of blueberry pancakes with butter and VT maple syrup, and coffee! The waitress thought I was done ordering after I said the omelet part and started to turn to leave, but I kept going with, "And I will also have..." She grinned and said, "You go, girl!!" at the end of my list, haha!! Okay, no, I did not really eat all of that food. About a third of it is in a box in the fridge right now. And I've been too full to eat a single thing since that brunch 8 hours ago! But oh it was so fun! (I think my body needs tons of food/nutrients right now to fuel the healing process. :))

I have to say, I'm in a strange place right now and don't know how to describe it. I thought that when cancer treatments were over, it would be this clearly-defined event, like, "WHEW, glad that's over, now I can go back to my life!" But it doesn't feel like that at all. Radiation's over, and that's a HUGE milestone which I'm thrilled about, but is that all it takes to automatically make me go from "cancer patient" to "cancer survivor"? Am I now "cancer-free"? But who's to say I wasn't "cancer-free" right after surgery, or after my 9th radiation treatment, or my 23rd? It's all quite confusing. I'm glad that I can used the past tense now and say "I had breast cancer," but at the same time, it's the same phrase that a person who had breast cancer 17 years ago can say, whereas it feels like just 5 minutes ago that I had breast cancer. It doesn't feel like it's "over," or at least, not as clearly or as much as I THOUGHT it would at this point. Partly it's because my datebook is still cluttered with doctor appointments. I'm seeing my naturopath on Friday, then my oncologist will put me on Tamoxifen the first week of June, and I have a thermogram a couple weeks after that, followed by a check-up with the radiation oncologist (and Lulu ;)) a week or so after that, and a check-up with my surgeon in early Sept (probably with more imaging tests?), and probably at least one more visit with my oncologist before then, etc. So I really don't have this "YAY, IT'S OVER! LET'S HAVE A PARTY!" feeling.

On the other hand, I AM returning to my "normal life" in many ways now (or rather, a new normal), and I looooove having the whole month of May to not have to go to the cancer center at ALL. I think it's the first time in 6 months that I've had more than a couple weeks without needing to go to the hospital for something. Wow, that blows my mind. I mean, the fact that I spent HALF A YEAR being a regular at the hospital. Really?? Ultrasound, biopsy, mammogram, MRI, chest X-ray, blood work, meeting with surgeon, more mammogram, surgery, surgery, check-up with surgeon, thermogram, consult with oncologist, consult with radiation oncologist, surgery, check-up with surgeon, 33 radiation treatments, more blood draws, more thermography, more oncology. All of that for 6 straight months. It seems so...not like my life!!

Six months of having my breast poked, squished, cut, sewn, injected with things, stuck with wires, compressed between mammography plates, looked at, discussed, photographed, tattooed, irradiated, washed, stuck with stickers, drawn on with Sharpies, scanned, analyzed, by dozens of strangers. Thank the gods THAT IS OVER!!! (Mostly.)

But, Tamoxifen looms. It's not so much that I'm "done with treatment," it's that I'm done with the local treatment and am moving on to the systemic treatment. That is, surgery and radiation were treatments done only to my breast. This daily Tamoxifen pill is going to effect my entire system/body. I don't yet know what this will be like and I'm getting nervous about it. It's possible that I won't experience any side effects at all, and I will just feel like myself and everything will be great! But this is unlikely. The other extreme is that I could basically feel like I'm in menopause, with hot flashes, nausea & vomiting, vaginal problems, fatigue, depression, headaches, etc. This, too, is unlikely. But there is no way to know except to just start taking the stupid daily Tamoxifen pill and see what happens. Probably I won't be totally miserable or totally fine; it will be somewhere in the middle. The not knowing is driving me crazy....when I let myself think about it. Mostly, I haven't been! I've been working, unpacking and settling into my new home (apartment shared with friends!), reading lots of library books, playing on the Internet, walking in the sunshine, drinking tons of coffeeshop coffee, spending time with friends, watching Buffy, journaling, making Michfest plans, and all of that good stuff. I don't WANT to be researching Tamoxifen and compiling a list of questions to ask my oncologist about it in preparation for our June appointment...the cancer books are collecting dust on my bookshelf while I instead read interesting and enjoyable books. Somehow I need to keep working on finding a balance, neither obsessing over the cancer stuff nor ignoring it. Maybe one reason I haven't been blogging much is 'cause I'd rather just ignore it right now. I want to just spend this one month without having to focus on the cancer treatments, you know? Radiation's over, and Tamoxifen hasn't begun. Why can't it just stay May forever?

Overdue Update

2010-05-10T19:23:00.004-04:00

I haven't written a real update in so long. Mainly this is because my "update" is: I AM EXHAUSTED. I've been averaging 9 hrs of sleep per night (along with experiencing sporadic insomnia, go figure!), and still, I feel half dead by late afternoon most days. This is normal/common for the last couple weeks during and after radiation, presumably because your body is putting so much energy into repairing all of the cells that spent 6 weeks getting an ass-kicking from the radiation. My skin held up very well, overall - my breast just looks sunburned. I can clearly see the lines of the radiation field, because the burn is a perfect rectangle, an inch or so around my breast in all directions. While my skin looks fine, I have no idea what the extent of the damage is INSIDE my breast (and LUNG, which the radiation field DID go into a bit). I know that my body is good at healing, but it just takes time. Right now it feels like that rectangular area of my body is sucking up all of my energy!!

I'm having trouble dealing with the fatigue. It makes me frustrated and impatient. I've always been a night owl - for years, my natural sleeping schedule has been 2 am to 10 am. That is, if I don't have work that dictates my hours of sleep, my body naturally reverts to its 2-10 am cycle. I was used to late-night alertness and slow mornings, whereas now, I'm more like a toddler - ready to crash by 8 pm, energetic and productive for several hours in the morning, then cranky without an afternoon nap and it's all downhill till 8 pm again. I somehow keep forgetting that I won't be able to accomplish anything more than dinner-and-a-DVD after approximately 7 pm - I have the best of intentions to do a bunch of tasks in the evenings, like return phone calls, fill out forms, work on the meeting minutes, map out my schedule, or whatever - and then I end up feeling like such a slug and can't do any of it and it makes me mad.

I'm also frustrated because I have several friends whom I used to see on a regular basis and now haven't spent time with in such a long time, and I want to catch up with everyone, and I want to have the energy to do it NOW, but I don't. :( I keep overestimating my energy. It's hard, because sometimes the fatigue hits so fast - I'll be going along just fine and then all of a sudden feel like I just cannot walk another step, or like I have to go home RIGHT NOW from wherever I am. I need to get better somehow at recognizing the fatigue sooner so it doesn't blast me like that. Or maybe I need to schedule myself rest times and stick to those, even if a scheduled rest time comes and I don't feel like resting/don't think I need it.

I got a chiropractic adjustment today for the first time in approximately a month and a half, and my chiro said that my spine has actually changed since my last adjustment, most likely due to my decreased activity level. e.g. I used to do trapeze and yoga once a week each, and now I haven't done yoga in 2 months and have only trapezed twice in the past 3 months. And I can FEEL it. :( I know I need to get back to exercising because it will be good for me in so many ways... but it's feeling like a catch-22 - exercise will give me energy, but I'm too tired to exercise. :P I've been walking an avg of 30 mins/day, but that's not enough.

Now it's 8 pm and I'm trying to decide between dinner or a shower, because I don't think I can handle both. AARRGGHHHH. SO ANNOYING. But I know that this fatigue is temporary and I will soon feel better and better. And I need to remember, too, that if temporary fatigue is the worst of my problems right now, then HALLELUJAH, because I am so blessed to be as healthy as I am. I freakin SURVIVED CANCER!! I am alive and well, and still have a full head of hair, and am not in pain, and yes, Tamoxifen is still coming up, but you know, it could be a LOT worse than it is right now. Underneath all of my anger and frustration at the fatigue, I'm grateful to be where I am right now.

YIPPEE!!!

2010-05-07T16:33:00.000-04:00

RADIATION IS OVER!!!! I'M ALL DONE!!!

A Month Off!

2010-05-01T10:10:00.003-04:00

Great news from my oncologist yesterday! Once radiation is over, I get to take a WHOLE MONTH off from cancer treatments of any kind to rest and recover!! SO HAPPY AND RELIEVED! I won't be starting Tamoxifen until early/mid-June!!

And my last day of radiation is Friday, May 7. I'm down to my last 5 treatments!!

Not enough hours in the day!!

2010-04-27T22:26:00.003-04:00

Okay, maybe 10:30 pm when I'm ridiculously tired is a bad time to be writing this post,BUT... I've been thinking. I feel so overwhelmed by all of the different things I'm trying to do for my health, like there just isn't enough time in the day to do all of this stuff AND HAVE A LIFE BEYOND IT! Every day, I am "supposed" to take about 15 supplements, brush my teeth, floss, clean my recently-crowned tooth with baking soda, use a smaller toothbrush to clean around my wisdom teeth where my regular toothbrush can't reach, clean and wear my mouthguard at night to protect my teeth when I grind them, do these jaw massage exercises to re-align my bite, do ear pulls to help my ears un-block, grind flax seeds and put them in my food, go to radiation, shower, put aloe on my breast 3-5 times per day, put sunblock on, walk/exercise for at least 30 mins, cook and eat vegetables, meditate, sleep at least 8 hours (more like 9-10 right now). Semi-regularly, I'm supposed to use a neti pot, gargle with herbal tea (for my enlarged tonsils), get chiropractic adjustments, meet with my oncologist, meet with my naturopath, go to therapy, pee in a cup, get blood drawn, etc., and tomorrow I'm getting another thermogram.

It feels like TOO MUCH!! I don't how HOW to fit it all in, when I'm also trying to be a normal person and do things like work, complete the typical errands that we all have (bank, post office, etc), keep my living space semi-clean, spend time with friends, etc. It feels like taking care of my body is a full-time job! Sorry, no, I can't go see a movie with you, because after I sleep for 11 hours, I'll be busy gargling and flossing and swallowing pills and rubbing various substances into my skin and steaming vegetables and pulling on my ears and reading cancer books and massaging the stress out of my jaw and then rushing off to radiation so I can come home and nap again and have nightmares that my therapist will want to hear about in an hour after I get my chiropractic adjustment while eating the rest of my kale during the drive over, thankyouverymuch!

RRRAWWRRRRR!! Fsadhfkdhaskf;awieurhufa;hsa;

Zap Zap Zap ZZzzzz

2010-04-27T22:02:00.003-04:00

So, I haven't actually written about radiation in a while, have I.

I'll tell you what it's like now -

Today was number TWENTY-FIVE! I only have EIGHT left!! The fatigue has really kicked in. I now feel heavy with exhaustion starting at about 8 pm. It gets hard to form sentences, and I feel like things take me 3 times as long as they should, and I feel like I'm underwater or something. It's a different kind of fatigue than I'm used to. I find myself attempting to write emails and instead just sitting here, staring blankly at the monitor, wishing so much that my thoughts would magically appear on the screen so that my fingers didn't have to expend the necessary energy to type them. It's pretty pathetic! I'm clumsy lately, dropping things all the time, like my pedometer, which I broke. I left my umbrella somewhere downtown, which is so not like me. I have to make myself really specific lists, otherwise I forget stuff.

Last night, I slept for ELEVEN HOURS, in a cashmere sweater because that's what feels best on my burnt skin right now. My skin's doing okay, overall. I think it looks pretty icky, but the nurse said last week that it actually looks much better than others' breasts at this far along in treatment, so... whatever.

Right now I'm doing that thing where I stare at the monitor hoping for my thoughts to magically appear. Because my fingers are having a hard time typing my thoughts, and they're rapidly dissolving from my sleepy brain anyway.

WHAT THE CLUCK?!

2010-04-23T20:51:00.003-04:00

Have you heard? The Susan G. Komen Foundation is partnering with KFC - KFC is selling pink buckets of carcinogenic chicken to raise money for breast cancer research. APPALLING. Here's the June 2009 newsletter of the Physicians Committee for Responsible Medicine, about the carcinogenic substances found in KFC's grilled chicken, which KFC is currently being sued over.

Breast Cancer Action (BCA) has started a letter-writing campaign to KFC and Komen to protest this, demanding that Komen only partner with companies that do not manufacture products that contribute to cancer. (Um, DUH?? I can't believe Komen even needs to be ASKED that!!) Here is the pre-written letter you can add your name to. It's super quick - please sign!! I edited/added to the letter to give KFC and Komen my own thoughts; I'm really on a rampage with this one. I don't know why this, in particular - when there is SO much stupidity and injustice in the world everywhere you turn - has me so riled up, but it does. I told both KFC and Komen that I'm girlcotting them, but it's not like I ever went to KFC anyway. I'm at home eating my local, organic broccoli. KFC claiming that by selling fatty, hormone-filled, carcinogenic chicken breasts they are helping save MY breasts pisses me off.

As BCA points out, this partnership is doing way more for KFC's bottom line than Komen's. And it is appallingly hypocritical of Komen to claim to be trying to end the breast cancer epidemic by partnering with a company that contributes to it.

Hoopla

2010-04-23T15:46:00.007-04:00

Okay, this cracks me up. This is the paper that my naturopath wrote her instructions to me on:

Yup, that's right, along with gargles, ear pulls, chiropractic, and another thermogram, my doctor has ordered me to keep hula-hooping!! HAAA!

yet another way in which i am weird

2010-04-22T08:11:00.004-04:00

i wonder if this is some kind of disorder?

i've been thinking, about how i can't stand having anything fake/chemical-y/unnatural in or on my body. i'm not sure how to explain it. but it FREAKS ME OUT. it was yesterday's crown that got me thinking about it all, because there was this moment when the dentist paused to let me rest my mouth for a while and i reached for my tooth with my tongue and felt that there was practically nothing left of it, and that's when i realized i would be getting a FAKE TOOTH, and i could feel the tears starting to press at the back of my face. i took a bunch of deep breaths so i wouldn't cry. because my automatic reaction was to freak out, not so much about the pain or whatever, but about something fake being about to go in my body! i calmed myself down by reminding myself that it's a good thing, it's a fake tooth but it will help me eat/has a great purpose, so it's GOOD.

but that got me thinking again about how i almost chose to have a bilateral mastectomy, and how upset i was by all the people who assumed i'd get reconstructed breasts afterwards or kept asking me about that, because i so strongly would rather be flat-chested than have FAKE breasts. i would never ever put myself through dangerous, painful, medically-unnecessary surgeries to get fake breasts that would essentially just be for appearance's sake, since they wouldn't have feeling.

my inability to have anything fake in or on my body reaches far. i hated my braces so much when i was a teenager, again, not because they were painful, but because they were fake - i have journal entries about this. i hated having this metal/foreign substance in me 24/7 for years, and when i finally got the braces off, i was SO SO HAPPY and relieved that i cried so hard on the way home i had to pull off the road!! i do not wear make up or jewelry, have no tattoos or piercings, use only natural soap/shampoo/toothpaste/etc, resist medicine as much as i can, and haven't ever been immunized even. i only wear shoes when i absolutely have to, and have for years been known as the barefoot girl - i even went to classes barefoot in college, until the first frost every year. my favorite place to be is the michigan womyn's music festival, where i wear nothing but underwear, as much as the weather allows for that. i have never done drugs, or smoked, or had an alcoholic drink. i think i've dyed my hair maybe 3 times total in my life, and that was years ago, and it was temporary.

i wonder why i'm like this. the exception to all of this is being in costume - that, i love. but in my normal daily life, i really can't stand anything unnatural in or on me, and it's not a conscious thing, really... it's just...the way i am. yet another one of the ways in which i'm really weird. i'm just hoping that i don't end up needing, like, dentures and a hip replacement someday, and freaking the hell out!! this also partially explains why radiation has been so emotionally unbearable for me - i feel like it's this invisible monster invading my body...something horrible going into my body that really really shouldn't be there.

tooth reexcision

2010-04-21T15:34:00.006-04:00

i'm skipping radiation again, but this time, it's because i'm on cape cod for dental work. sadly, i was so excited about this. but...

i severely misunderstood what getting a crown on your tooth means. i was naively picturing something like popping a cap on a tooth, the way you pop a cap on a pen. i had no idea it actually means being stuck in the chair for 2 hrs while someone drills your entire tooth down to the bone, making it sound like there’s a jet engine in your head, while you try not to swallow all the blood. he told me he had to drill more than expected, because when the root canal had been done several years ago, the decay was right up to the bone, so today he had to drill a little bit of bone in order to get around it and seal it off. my brain automatically interprets this as, “oh, couldn’t get clear margins, again.” like it was a tooth reexcision, minus K and the IV of happy juice. calling it a “crown” makes it sound like something nice that goes on top of your tooth, but really, it’s like getting an entire new tooth glued to the pitiful stump of your old one.

also, my bite is off, due to my stress-induced jaw problems. he showed me exercises to do to help relax and realign my jaw, and made plans to make me a new nighttime mouthguard, now that i have gnawed the hell out of my old one to the point where it's riddled with holes.

before the appt, i braced myself for the Cancer Conversation i knew we'd be starting with, trying to plan brief responses to his inevitable questions, responses which would not invite further questions. and that seemed to work - he replied with, "my heart goes out to you. i don't know what more to say." i appreciated that, and thought, whew, cancer conversation out of the way. but about 90 mins later when i was in pain and swallowing blood and really just trying to take deep breaths until it was all over,

he actually pulled the earphones away from my head (i was listening to his alison krauss CD - very nice of him) to say something like, "you're going to be okay! you know that, don't you? you're doing so many good things, and you will be okay. if you were NOT doing all these good things, you wouldn't be okay." trying to continue focusing on alison krauss, i did the smile-and-nod thing, but when i heard "blah blah blah silver lining blah blah" come out of his mouth, lulu rushed to my side and started barking like crazy.

lulu's warning to the world at large: DO NOT use the words "silver lining" in reference to cancer, ever. this goes back to the "cancer is not a gift" thing.

by the way, i've been hearing stories from a few of you that lulu has been helping you out during doctor's appointments, too! i'm so glad! lulu can teleport anywhere, instantly, so feel free to borrow her whenever you need her!!

Zappin it to ya...

2010-04-16T22:02:00.005-04:00

Update on everything:

1. I skipped radiation today, just for today, and DAMN did that feel good.

2. I've been experiencing depression and anxiety, which waxes and wanes, and is very stressful. I don't really want to blog about it... I'm just saying.

3. I went to trapeze class last night, and it felt SO SO good to be "back," with chalked-up hands, re-building my calluses... but my entire relationship with trapeze is so different now... that is a post of its own for another time, or maybe in my trapeze blog instead of here.

4. I went to an art show at Keene State College tonight, which included an exhibit by KSC senior Jessica Yager, whose mother was diagnosed with breast cancer last year. Her mother's journey, from diagnosis through treatment, is the theme of Jessica's art, and it's incredible. I was entranced by this fountain she created, with a life-sized bronze sculpture of her mother (post-mastectomy), standing in a healing rain, in a bed of ocean stones. It's beautiful. After I stared at this for a while, I rounded the corner and was suddenly inches from this large drawing of a breast filled with lobules and lymph nodes glowing blue... that brought me to tears, as the memories of my Sentinel Node biopsy came back to me. The blue dye they injected into my areola to make my lymph nodes glow like that, too.

Jessica's art is a mixture of drawings and words (found a lump, Oncotype, mammogram, mucinous tumor), sort of all blended together, and it was so emotional for me because it was like a huge, public, visual representation of the swirl of thoughts/words/emotions that are inside of me. Part of one drawing was her mother lying on the radiation table, there under the linear accelerator, and it was so surreal to be staring at that in an art gallery... that machine that has been a daily part of my life now for a month. I thanked Jessica for her work, rather stupidly saying by way of introduction, "I have breast cancer, too!" And then I met Jessica's mother, who immediately wrapped me in a hug. She asked me how things are going for me, and I blurted out, "I skipped radiation today!!" and it turns out she, too, is about 2/3 of the way through her radiation treatments. We were both a bit teary as we talked, connecting as is only possible with a woman who's been through the same journey as you have. I cannot recall any time pre-diagnosis when there was anything in my life that led me to hug and cry with a complete stranger the instant we met... it's a very strange feeling.

If you're near KSC, check out the gallery... Here's the info: http://www.keene.edu/tsag/exhibits.cfm

Planning Ahead

2010-04-13T11:10:00.003-04:00

This is a crazy thing to be saying in April, but - I WANT TO RETURN TO SKIING! I skiied regularly from age 6 all the way through college. Then I stopped, because once my student discount was gone, I couldn't afford the lift tickets. But when I was packing/moving recently, I came across my little ski medal (bronze, junior race, Bretton Woods) and I started reminiscing about how much I really loved skiing. And I realized I miss it a lot. I HATE HATE HATE snow and winter, as many of you know, but I was thinking... back when I was a skiier, I didn't hate winter this much. Maybe I only hate winter/snow because I don't have an enjoyable winter activity anymore, and swooshing down the slopes again would improve my relationship with winter!

Sadly, my ski equipment is currently collecting dust in my parents' attic. One ski boot is full of mouse poop. But I will clean everything up for the next ski season!!

"I'm Too Young for This"

2010-04-08T09:52:00.003-04:00

This weekend, I'm going to a conference in Boston for young adult cancer survivors. Haven't been to Boston in years...really looking forward to it!

Actually, I was on the fence about going. It's 2.5 hours of travel each way... is it worth it? Is being with other young adults with cancer that important to me? Then, I had this interaction with another radiation patient yesterday... she's maybe in her early 70s. I said hi to her as she came out of the radiation room, and she said hi back, and I asked how many treatments she has left. Just a few, she told me, then grasped my arm and launched in with:

"You just started, didn't you? I'm so sorry, honey! You're so young! How old ARE you? 31? You don't look that old! Oh, you shouldn't be here! I'm so sorry. I'll pray for you. You're a good little girl!"

I went home and registered for the conference!!!!

2010-04-08T09:45:00.004-04:00

Gonna B OK

2010-04-08T08:47:00.004-04:00

Yesterday was much better, because:

A) It was 85 degrees and gorgeous. I walked to and from the hospital along a woodsy trail by the river, and parts of the trail even felt like Fest! The techs laughed at how sweaty my chest was from the sun & exercise.
B) I had 2 Rescue Remedy pastilles and 6 squares of 72% dark chocolate.
C) I remembered to stuff my pockets full of sweet notes from my loved ones, healing stones, little photos, etc. so I could carry all that love with me into the icky radiation room.
D) K reminded me (via email) of why exactly I had chosen to do radiation instead of mastectomy, and I had actually forgotten that (!!), so I thought about it the whole time I was in the waiting room, re-affirming my decision.
E) It felt great to have given up my need to understand & trust the radiation and to be able to just trust by proxy, and thus, I was able to lay there with my eyes closed and breathe and was more relaxed than usual on the table.

And LULU was awesome!! She is the radiation oncologist's social-guide dog that my imagination created, and I was looking forward to seeing her during my meeting with rad. onc. after my treatment... I was so surprised when LuLu showed up in the radiation room first!! She was sitting on the floor there next to the table, and looked up at me and winked, from behind those goofy glasses. "I'm ready!" she assured me, and her voice was surprisingly deep for a dog wearing a pink bow. I almost laughed out loud. Maybe I am really freakin losing my mind. :)

LuLu was very helpful during my meeting with rad onc. When he came into the room and stayed standing against the counter instead of sitting in one of the 2 available chairs, LuLu sat next to me instead. Rad onc said that he heard I'd been having a rough week. I told him I now have contact info for a few therapists and support groups, which is helpful, and he replied, "Have you called any of the therapists yet? Sometimes you don't click with someone right away and have to try a few to find someone who you click with. And as for support groups, well, sometimes hearing all about other people's problems just makes it more difficult, but, I guess you won't know until you try it..."

LULU TRANSLATES:
"I'm so glad to hear you've been reaching out for support! That can be difficult to do! A lot of women have found the support group very helpful; I hope it goes well for you and you connect with some wonderful people. I've heard great things about the therapists that [nurse] recommended to you. It's not uncommon for women who are going through daily radiation to struggle with it like this, especially mid-treatment, so you're not alone, Britta. There are many sources of support for you."

And when I expressed my skepticism of the necessity of the 33 radiation treatments (e.g. maybe I'd be fine with less!), rad onc admitted that I'm right, there's really no way to know if I actually needed ANY radiation, or less than the 33 treatments, or the full 33 treatments... then he started rambling about something that I only heard as: "test tubes of cancer cells extrapolation radiobiology cancer cell death lower curve randomized trials..." LuLu distracted me by licking my face, rolling her eyes sarcastically, and making goofy faces at me. She also apologized for his tie.

I walked about 90 minutes in the sunshine yesterday, which was so nice... and my theory was that exercise would prevent (or at least reduce) the fatigue that comes from radiation, but maybe not?? I started watching a DVD around 7:45 pm and fell asleep before it was even over, then slept straight through till 7 am!! (That's WITHOUT the 20mg of melatonin that I take nightly - because I fell asleep before I could take it!)

LuLu

2010-04-06T19:40:00.009-04:00

I'm devising coping strategies for my various problems at radiation.

I've recently come to understand that I should not be taking the rad. onc.'s less-than-stellar bedside manner personally, and that it's more him than me. This helps. I wish he could have an assistant with him, to guide him in situations that require interacting with other humans, similar to the way in which people with visual impairments are assisted by seeing eye dogs.

So, I'm going to IMAGINE such an assistant every time I have to interact with him. Meet the rad. onc.'s guide dog, LuLu:

When I first met the rad. onc., his opening line to me was, "So...this all started with a lump?"

LULU TRANSLATES:

"Hi, I'm Dr. [name], it's nice to meet you! I've spoken with your surgeon, and I've reviewed your medical records, and I'd like to spend a few minutes talking with you to hear what the journey has been like for you so far. I understand it was your nurse practitioner who palpated a lump in your breast, leading to your breast cancer diagnosis?"

When I said that I was still trying to decide between mastectomy and radiation, and that I feel confident that I would be okay with mastectomy if it is better for my health, the rad. onc. replied, "You might feel differently in 10 years. Some women want to preserve nipple sensation."

LULU TRANSLATES:

"What a difficult decision to have to make! You have my sympathies, but of course I can't imagine what having to make such a decision feels like, since I'm male! I'm assuming you're talking extensively with K about what mastectomy would mean, and I can tell you about what radiation would be like. Do you want information about a local support group for women with breast cancer? It might help to talk with other women who have needed to make a decision about radiation vs. mastectomy."

LuLu also comes over to let me pat her, and assures me that just like on the radio when the offensive words are bleeped out, she will bark louder than the rad. onc.'s voice if he ever attempts to say the words "nipple sensation" to me ever again.

Trying

2010-04-06T18:58:00.004-04:00

One day at a time, right? I think yesterday was my "rock bottom" for radiation. I entered the building crying, and even when one of the techs rushed up to assure me that I could keep my shirt on instead of the gown, I was STILL crying when I entered the treatment room. (Which surprised and dismayed the techs, I think - in a, we let you wear your own clothes...NOW what's wrong?? way.) I was crying to the point where my breath was coming out in shuddery gasps that made it very difficult for my body to be correctly positioned and still. I mostly held my breath through the 44 seconds of radiation and then was outright sobbing like a little kid. One of the techs and a nurse calmed me down as I babbled all about my radiation fears to them, giving me tissues, kind words, and mini back rubs. Of course they added the usual disclaimers about how the rad. onc. is the only one who can fully answer my questions, and offered to let me go talk to him. I didn't want to. But I felt mostly better when I left after talking with the nurse and tech, and that got me thinking: which am I seeking more, comfort or information? Because they come from different sources, during this phase of treatment. It seems like my need for comfort & emotional support is currently stronger than my need for information, because I've noticed that during the past few days, I have reached out to the people I'm most comfortable with, knowing that they're not the ones with the answers to my radiation questions, but am still resistant to meeting with the rad. onc. despite his wealth of knowledge. (I don't mean reaching out to the nurse and the tech, necessarily - I sobbed to them by default, because they were the ones present, not because they were the ones I'd run to for comfort.)

I also realized that there is probably nothing more the rad. onc. can say at this point that would make me understand and believe that the radiation is good for me. He has tried to explain it to me, and other people have tried to explain it to me, but I just flat out can't believe/trust it - I continue to feel that the radiation is BAD. So what I've decided is that I'm going to try and let go of my need to understand it, as difficult as that is for me... and instead, I am going to trust the people who I trust who believe that the radiation is good for me. I still don't trust radiation, but I'm going to trust the people I trust's trust in it. Does that make sense?? And I will read the Tao te Ching lots and lots and lots to help me through this whole giving up control thing.

I am meeting with the rad. onc. tomorrow (it's required once a week!), and with my med. onc. on Friday, and I'm going to call tomorrow and make an appointment with a therapist. I will be okay. I really just had to have that meltdown, which I'd been staving off for such a long time. I think I wasn't allowing myself to "let go" like that, because people are always telling me how "amazing" and "strong" and "positive" and "inspiring" I am, and all of that. I get so many compliments for "keeping [my] spirits up" and I think subconsciously, I started to feel like I had to maintain that... like no way can I possibly fall prey to depression and anxiety, not when I'm Britta, the crazy silly hula-hooping happy girl who trapezes her way through cancer, in her Wonder Woman t-shirt! But you know what, there is also a Britta who sometimes cries so hard she nearly hyperventilates, and I have to be okay with that. And there's nothing like having to go to the hospital and be a cancer patient every goddamn day to trigger that meltdown.

And I still cannot make any promises that I will complete every day of radiation. But I now feel more committed to at least TRYING to. One day at a time is all I can do.

Down with the Gown!

2010-04-05T19:50:00.002-04:00

UPDATE: They changed their minds and they are letting me wear my own T-shirt instead of the gown! (Except on Wednesdays - Wednesdays, I have to wear the gown. But whatever, I'll take it!!)

I still cried a river today, but, one step at a time.

Contemplating Quitting Radiation

2010-04-04T09:01:00.006-04:00

i'm considering quitting radiation. i've now had 10 radiation treatments, and i'm "supposed" to have 33, but i'm not sure if i can do this 23 more times, nor am i convinced i NEED to.

i've already blogged about problems i've been having with radiation, but a brief re-cap:

day one - broke a tooth right before the appt and cried through it.
day two - asked if i could please wear my street clothes into the room instead of the gown and then just take my t-shirt off, and was told NO. i sit face to face with the "CAUTION: HIGH RADIATION AREA" sign and freak out.
day three - had a MALE tech poking me, and had to remind the rad. onc. for what felt like the millionth time that that's not okay. rad. onc. stares at my naked breasts and asks the techs, "should we use the wire?" and one of them gasps in reply, "no! it's only her 3rd day!" and i FREAK OUT, remembering the trauma of the wire shoved deep into my breast before my surgery. the nurse tells me to stop drinking my beloved chickweed tea, and can't give me a reason why.
day four - the techs, rad onc, and physicist were all questioning/seeming to doubt my treatment, for the 4th day in a row, talking OVER me instead of TO me. one of the techs asks me conversationally, "so, are you a college student?", and it bothers me that these people i have to put incredible trust in don't even know basic info such as the fact that i'm a decade older than they think.
day five - i tell them i'm not getting back on the table till the doctor explains to me what's going on, and why my treatment has been in doubt all week. he explains it to me, and adds, "yeah, i could tell by the look on your face the other day that you were getting worried..." but he didn't think to try and alleviate my worry at the time?? great way of developing rapport with a new patient. way to go.
day six - no issues, surprisingly, other than i still hate the gown.
day seven - my big moving day. u-haul gets a flat tire in the rain, i have to reschedule radiation, and show up water-logged and filthy. driving an hour RT for 44 seconds of radiation is a pain in the butt.
day eight - treatment is followed by my required once-a-week meeting with the rad. onc. he stands against the far wall, clutching my chart, looking at me awkwardly, like he's worried that i will bite him. clearly he doesn't like our weekly meetings any more than i do.
day nine - like nearly every day, the techs have to remind me to "relax down into the table," because my body is always so tense i'm subconsciously arching my back, and this makes it difficult for the field to be correctly set up.

and then, the part i hadn't blogged about yet -
day ten - i actually got in a fight with the techs over the gown issue, embarrassing as that is to admit, and ended up in tears over it. :( i showed up in a very simple t-shirt with NO bra even, and had no purse/personal items to store in a locker, and asked, PLEASE can i just go into the treatment room the way i am and take off my t-shirt there. they again said NO. i asked WHY, and they had no answer - just said "it's part of our procedure here for breast treatments." i said, but it's so unnecessary for me to change into the gown just to walk 20 feet and take it off again, and it makes me feel like a sick person every day when i'm not, and just going in in my t-shirt would save us all time, and save laundry, and why does it matter so much?? i was crying, and all they would say is, "i'm sorry you don't understand the reasons for the gown." and i cried through the entire treatment, with the tears running down into my ears as i was unable to wipe them away because i had to keep my arms very very still above my head. it's quite difficult to hold my body still for the radiation when i am crying. at the end, one of the techs came back into the room and asked in this fake cheerful voice, "how's your day going, britta?" still obviously crying, i said, "badly!" why would she even ask that to someone who's in the middle of crying??

i practically fled the building. and all weekend i've dreaded going back. i'm going to at least go to my appointment tomorrow, but i don't know if i'll actually agree to get irradiated. besides all of those problems i've been having with rads, my BIGGEST problem is that i flat out don't trust the rad. onc. or the treatment plan. it makes no sense to me that EVERYONE supposedly needs 5-7 weeks of a uniform dose of radiation, regardless of one's cancer type, tumor size, stage, grade, lymph status, margin size, age, general health, etc. logically, these factors SHOULD make a difference and radiation SHOULD be individualized based upon them. the rad. onc. told me that these factors don't matter and the uniform amount of radiation is what's been shown to be effective for all. i just can't accept that. it's more likely that the reason everyone gets the same dosage is because in order to avoid lawsuits, rad. oncs need to never prescribe less than the standard of care, and because hospitals/doctors don't have the TIME to individualize each person's radiation plan in this way because there are just too many patients to process. these reasons for not individualizing treatment may be valid and true, but still. the lack of individualized radiation plans does not mean that everyone DOES benefit equally from/require the standard radiation treatment. i'm not convinced that the prescribed 33 radiation treatments fits me any better than the stupid "one size fits all" gown does. maybe 10 rads treatments IS all i need, or maybe it's 12, or 19; no one can really KNOW, not me OR the rad. onc.

after my 3rd surgery, i got a thermogram at sojourns, and surprisingly, it showed that my breasts are very healthy and functioning well!! imagine that!! and of course, a thermogram done NOW would show that my breasts are a total freakin MESS, thanks to 10 days of rads. i just can't get myself to understand that radiation is a GOOD thing, when normally, radiation is so bad and dangerous. the big "CAUTION: HIGH RADIATION AREA" sign on the treatment room door makes me want to run the other way, not go in there and lie half naked on a table so strangers can irradiate me on purpose. i am filled with so much anger, fear, and negativity every day when i am there... i can't help wondering if all of that negativity is counterproductive to the treatment, or if the benefits of the radiation really outweigh all the emotional distress it's causing me.

and i fully admit that i CANNOT hear my intuition's voice right now. it is too muffled by the depression & anxiety that is creeping in. i can't tell which voice is which. i don't know if the reason i'm so strongly against radiation and have been all along is because my gut knows that it IS bad for me, or at least unnecessary, and i should trust the thermogram that my breasts were happy and healthy without it... or if it's just FEAR bullying me out of radiation, and really i DO need the radiation. and i hate not having enough time to figure it all out, because radiation is EVERY DAY, RIGHT NOW. either i do it, or i don't.

i'm in the process of contacting as many of the people on my treatment team as i can to ask more questions and get more info, and i'm getting therapist recommendations, and we'll see how it goes. i want to ask again exactly what they think my risk of recurrence is both with and without radiation. and is there any way to determine what my recurrence risk would be after only doing 1/3 of the prescribed rads treatments? (and would i believe it anyway?) how much of a risk am i willing to live with?

right now i'm just so emotionally exhausted by it all.

Moving Day/Radiation Day 7

2010-03-30T20:42:00.004-04:00

warning: i'm so tired i may not finish this entry! when the tv show i was watching ended, my first thought was, "oh good, now it's 9:00 and i can take my melatonin and go to bed!" and then i was annoyed to discover that it was only 8:00. oh geez.

today was moving day, and what a fiasco. i could not have gotten through it without mom & john & andee's help! mom & john came with the u-haul truck, and we were amazingly efficient, loading all of my furniture into it in just one hour, all ready to drive it away...only to discover that the truck had a flat tire. that delayed us for THREE HOURS. in the 40-degree rain. the people on the phone kept saying the repair guy was "on his way," over and over, until john finally told them his daughter needed to get to her radiation appointment, and then the repair guy came in 15 minutes. yeah, i will totally play the cancer card! even after i called the cancer center to reschedule my radiation session for 2 hrs later than usual, we were still under a major time crunch to get everything done in time for me to drive that 30 mins to the hospital. we got all of my stuff into the storage unit and then brought an entire pick-up truck full of junk to the dump. it was overflowing, in fact, with so much junk that it cost me $58 to dispose of it all! at least 50% of it was crap left behind by my previous roommates and even the previous tenants of the apartments i've lived in, and it sure didn't help that the junk pile had been in the rain all day and the charge for trash is based on weight!

we finished with just minutes to spare, and i went to radiation totally water-logged and filthy. the techs sympathized with my ordeal today, and i joked at the end that i was off in search of more chocolate. i went into the dressing room to change out of that gown (which i still hate, btw), and when i came out, i was surprised to find one of the techs there with an open box of chocolate truffles, waiting for me. it was so sweet and unexpected, i didn't want to sound like a jerk by saying, "no thank you, i stopped eating refined sugar two months ago and now only eat dark chocolate with a cocoa content of above 70%," so i simply thanked her and took a milk chocolate truffle. and when i got in the car, i ate it and enjoyed it! it was only the size of a cherry, so i'm not going to feel guilty for it...especially because i spent the drive TO radiation gnawing on frozen cauliflower right from the bag, in a desperate attempt to get my daily quota of anti-cancer cruciferous vegetables - how sad is that??

now it really is 9:00 and i can start getting ready for bed.

Woof

2010-03-27T09:26:00.003-04:00

I think the universe is trying to tell me something.

First, K tells me she thinks getting a dog would be good for me.
I told my mom, and she said, "That's funny, I was thinking the same thing!"
A few days later, I turn on the radio in the car and the first thing I hear is a woman on NPR gushing about how patting a dog releases oxytocin and the therapeutic value of dogs.
A few days later, I was watching a Q&A session with Dr. David Servan-Schrieber (Anticancer author), and someone asked about exercising reducing one's cancer risk, and his reply was, "The best way to get 30 minutes per day of exercise - get a dog!"
Then when I had to have 4 vials of blood drawn at the oncologist's office, E distracted me by telling me funny stories about this bull mastiff dog that she knows.
And my brother and sis-in-law just got a dog.
And now I'm dogsitting for two weeks.

Wow, ya think I should GET A DOG?!? Too bad my life is not at ALL set up for that right now, since I am in between apartments and all. But maybe once I am settled somewhere. In the meantime, I'm having fun taking those "What Type of Dog is Best for You?" quizzes on the Internet. :)

Radiation Day 5

2010-03-26T21:21:00.003-04:00

I arrived at the hospital a few minutes early and met with the rad. onc. to ask flat out, WHAT'S GOING ON? Why has my treatment plan been in question every day? Why did he and the physicist come in 3 times to check things? Why did I need films 3 times in 5 days?

It turns out, he was modifying/tightening the radiation field so that the radiation is even further away from my heart, to protect my heart even more! That was great news! The rad. onc. that did my simulation/designed my treatment plan a week ago was the woman that was subbing for him while he was on vacation, and when he got back, he couldn't just accept her plan without checking it himself. And in the process of checking it, he determined that it was possible to modify the field in this better, heart-protecting way. I was really relieved to hear that, and he showed me the before and after photos (i.e. her plan vs. his plan), and I'm satisfied with the answers now.

BUT, I'm annoyed that he couldn't have just explained all this to me days ago! When I was standing up to leave his office today, I said, "Thank you for explaining it all. I had really been worried." He replied, "I know, I could tell by the look on your face the other day that you were worried and I knew you'd have questions." GEE, THANKS! You took a mental note of the fact that I was worried, but made no effort to do anything about that?? What I learned from this meeting with him today is that, for starters, I can't just assume that doctors are going to take the initiative to tell me the information I need, even if to me it seems like common sense for them to do so. I need to keep speaking up and asking all of my questions. I also realized that I had been misinterpreting his motives - I was paranoid and had thought that he and the techs were purposefully keeping information from me, by talking "in code" amongst themselves and being really vague so that hopefully I wouldn't notice that they were having problems and they wouldn't have to tell me about the problems. Now, I understand that they weren't trying to trick me. He was more than happy to explain everything to me once I asked my questions...I suspect the disconnect is simply due to him being more interested in/oriented towards his machines than his patients. He just does not have good people skills. And that stinks, but at least now I "understand" him better and know what to do in the future: JUST KEEP ASKING QUESTIONS, whenever I need to.

Today's actual radiation appointment took just 20 minutes from start to finish, which was a nice surprise and a relief. It's SUPPOSED to be that short every day, but this was the first time it had been shorter than 45 minutes! So I HOPE HOPE HOPE that subsequent appointments will be this short & sweet and I'll settle into a routine, and it will be relatively smooth sailing for the remaining 28 treatments. Because OMG, my anxiety before this appointment... I swear I was already mentally composing the "I quit radiation! I want a mastectomy!" email to my surgeon!!

Radiation Day 4

2010-03-25T22:42:00.004-04:00

I meant to be asleep right now, but clearly I'm not... Internet addict, that's me.

Radiation was difficult again today, and that's because it was Day 5 of my treatment being questioned/doubted/debated by the staff, and no one has explained to me what's going on and they brush off the direct questions that I ask.
Day 1 - simulation, they took films of my chest but didn't radiate me.
Day 2 - They took more films, because I was "so tense" on simulation day that those films weren't valid. (?!) Then they radiate me.
Day 3 - The techs called the physicist into the room "to check the field." The three of them stood there staring at/poking at my chest, in a "hmmm" kind of way, saying things like, "I think it's okay. Yeah, it's okay." Then they radiate me.
Day 4 - The techs called in the radiation oncologist to check the field, and again, the three of them stood there staring, poking, debating. "Should we use the wire?" rad. onc. asked. "No! It's only her third day!" a tech replies in surprise. Then they radiate me.
Day 5 (today) - The techs again seem uncertain about my set-up and again take MORE FILMS, and again call the rad. onc. into the room. He stares again, says to a tech, "Yeah, I see what you mean," and leaves. Then they radiate me.

At the end of today's treatment, I asked the tech, what's going on? Why have I had films 3 times in 5 days, and is that normal? Why does my treatment seem to be under question every single day? She smiled, told me I'd have to ask the rad. onc. those questions, but assured me that everything's fine - he just "modified the field," and they're "just trying to get everything 'just right,'" and once it is "just right," I'll only need films once every 6 treatments. Now I'm wondering, WHY have I been radiated FOUR TIMES if things are NOT "just right" yet??

I'm not getting on the table tomorrow until the rad. onc. gives me some answers and explanations. I'm nervous, because it's difficult for me to be assertive. But I have to do this! It's MY BODY, and it's the only one I've got, and radiation is freakin SERIOUS!! Today, when I was getting onto the table, one of the techs cheerfully asked me, "So, are you a college student?" UM, NO, I'm 31 years old and graduated 9 years ago! Is that why they've all been talking over me, about me, amongst themselves, without ever explaining things TO me?? They think I'm just some teenager?? Oh Hell no. This is NOT going to work for me.

Tomorrow, rad. onc. needs to tell me WHY and HOW the field has been modified, and what it all means, and why he and the techs and the physicist have needed to spend so much time conferencing about my treatment every day. Or I QUIT RADIATION.

Radiation Day 3

2010-03-24T17:45:00.005-04:00

I still hate it. Is it going to get better?? I have to do this THIRTY MORE TIMES. :(

Today, the main problem for me was that one of the techs poking at me while I was lying there bare-breasted was male. I have told the radiation oncologist, his sub last week, the nurse, and one of the techs, at least once each and sometimes twice, that I am very uncomfortable having male doctors touching my breasts and need an all-female team. My surgeon, too, called the rad. onc. ahead of time and had a lengthy chat with him about this. On my simulation day, the tech who was doing my CT scan assured me that although the facility has one male tech (and the rest are female!), if he is part of my treatment at all, he will just be the one who is in the other room to turn the radiation switch on and off and he won't be touching me. Well, today he was in there touching me! And it's only Day 3!! Did they all "forget"? Or not take me seriously? Is the info not in my chart? I was mad. I don't CARE if they don't understand/agree with/relate to my discomfort with being touched by male doctors, because you know what, it's MY BODY, not anyone else's...which means no one else has to understand, they just need to RESPECT MY NEEDS when it comes to MY BODY. So when I met with the rad. onc. after my treatment today (I'm required to, every Wed), I AGAIN told him that radiation is difficult for me emotionally, and I need the techs who are touching me to be female. He looked awkward and said he'd talk to the staff again.

That's my primary problem with radiation. My secondary problem is that I absolutely hate having to change into the damn hospital gown at every appointment. For starters, it takes up time and is rather pointless - I have to go into a changing room, take everything off from the waist up and put on one of those horrid, ugly, shapeless, huge gowns that I can never seem to tie properly, then put my clothes in a locker and lock it, put the key on my wrist...then walk down the short hallway into the radiation room so the techs can take the gown off of me. What the F is the point of the gown?!? I asked yesterday, can I please just walk into the radiation room in my normal clothes, take off my shirt, lie on the table and get zapped, put my shirt back on, and go home?? They said NO, basically because the gown is just "procedure" and they know someone's ready to go when they have the gown on. I really don't see what the big deal would be if I didn't wear it, and they'd "know I was ready to go" because I'd be sitting in that same stupid "waiting chair" by the radiation room entrance that every other patient sits in. Not bothering with the gown would not only save time, it would help me emotionally, too - wearing that big ugly gown every day makes me feel so much like A Sick Person In A Hospital, and not like ME at all.

OH, and another problem I had with radiation today - when I was lying there on the table, the techs called in the rad. onc. to "check the field," and they stood there debating whether the field was okay or not, staring at my chest for what seemed like forever... rad. onc. asked something about if they should "use the wire," and one of the techs blurted out, "No! It's only her third day!" WTF?!? "WHAT WIRE?!" I asked with much anxiety, and rad. onc. was just like, "Oh, nothing really, I was just thinking out loud..." ALKHFUIEHW:K??! That's all he said about it then, and I had to wait until the radiation treatment was over and I was in his office afterwards to again ask him to explain what he was talking about with the wire comment. And he clarified that later on during the treatment process, they may have to place a wire on my skin, ON, to check something. Not IN my skin. It would have been helpful if he had made that clear WHILE I was lying there on the table, so that I did not spend the rest of the treatment having flashbacks to that horrible pre-surgery procedure in which two men stuck a wire deep into my breast while I cried.

Radiation, so far, is a hell of a lot more stressful than I expected it to be. Am I going to make it through THIRTY more treatments like this?! I honestly don't know. If I had a mastectomy now instead, I'd never have to go through it again. I'd never again have to have a mammogram, an ultrasound, a breast MRI, or a man touching my breasts...

Radiation Day 2, and Oncologist Appt

2010-03-23T21:51:00.007-04:00

I was double-booked today, with both radiation and my oncology appt at 2 pm - annoying! Radiation was difficult again, emotionally. I had to wait a few minutes for my turn, after I'd changed into the hospital gown, and the chair they have you sit in to wait is directly across from the entrance to the radiation room. The door has always been open, but this time it was closed while some other patient got X-Rays in there, and thus I got to stare at the door with its huge orange and yellow sign:

That sign made my stomach heavy. Yeah, radiation is scary & dangerous & BAD... we've all been told this for years. So it's hard for me to wrap my head around the fact that right now, in this situation, radiation is GOOD for me. I'm trying, I really am. But so far I hate these daily radiation treatments and I'm only forcing myself through it because 6 weeks of this is preferable to being breastless for life.

I was 15 minutes late for my oncology appt, because it took longer than expected for the techs to position my body exactly/correctly on the table underneath the linear accelerator. They had to call in the physicist to check the field. I have no idea what that even means, but I had the physicist plus the two techs taking turns touching my sternum and saying numbers to each other, nudging my hips like 3 millimeters to the left, then tilting my torso half an inch to the right, and on and on. At least I wasn't crying with anxiety today, I was more impatient and annoyed because I was late for my oncology appt.

Not that I was in any hurry to get upstairs to have 4 vials of blood drawn!! That was no fun. But E was there to keep me chatting and laughing and distracted from the blood. E is the manager of the clinical trial I have joined, the TAILORx Trial. At first the only reason I signed up for the TAILORx Trial was because it was a way to get the Oncotype test for free - which normally costs $3000+!! TAILORx is complicated, but in a nutshell: the researchers' goal is to determine what effect chemotherapy has on breast cancer patients who are at "intermediate risk" for recurrence, based on Oncotype scores. Half of the intermediate-scoring women in the trial will receive chemo, and half won't, and you don't get to choose whether to be in the chemo or no-chemo group - it's randomized.
The catch: the creators of the Oncotype test say that no one with an Oncotype score less than 18 benefits from/needs chemo, and is thus categorized as "low risk." TAILORx, in order to have a larger study group, categorizes you as "low risk" only if your score is less than 11, and categorizes you as "intermediate risk" if your score is between 11 and 25. This meant that even though the ONCOTYPE people say my score of 15 indicates that I'm at "low risk" for recurrence and do not need chemo, the TAILORx people say I'm "intermediate risk" and thus I had a 50/50 chance of being randomized to the chemo group. If I were put into the chemo group, I would have chosen to drop out of the trial, because there's no way I'm doing chemo experimentally, just to verify that the Oncotype people are right that chemo won't benefit me. I'm gonna believe the Oncotype people that I don't need chemo!

But anyway, I was randomized to the "no chemo" group, THANK GODDESS!!! This means that, for starters, my relationship with my oncologist has greatly improved, now that chemo's off the table and there is no longer that tension caused by her pushing chemo and me resisting it. This also means that I can stay in the TAILORx Trial and my participation in it will contribute to research that will help other women in the future, and that makes me really happy. Helping women (and kids!), in general, is what my life is all about. I was pissed off when I was dx'd with cancer and had to put so many things on hold, including applying for a job at the Women's Crisis Center, facilitating Girls Circles, and sponsoring the girl in Pakistan that I'd been sponsoring for 8 years... right now I'm still in the process of putting on my own oxygen mask before attempting to help others again, and I'm frustrated by being A Cancer Patient and impatient to get back to my activist life...so I'm thrilled to be able to at least participate in a research project that is designed to help women. The other great part of being in the TAILORx Trial is that now that I'm not in the chemo group, there are no negatives/downsides to being in the trial - I don't have to participate in any risky or experimental treatments; I'm receiving the same treatments I would have chosen even if I weren't a part of the trial. I guess you could say I'm part of the "control group" - if the researchers want to know what effect chemo + Tamoxifen has on women with intermediate scores, they need to compare that with women receiving Tamoxifen only, and that latter group includes me. (Tamoxifen won't start until after radiation, so I'm trying not to think too much about it right now!) And because my information/progress is being used for research, I'll be monitored extra carefully by all of the doctors, which certainly isn't a bad thing... And, so far, the manager of the TAILORx trial, E, is my second-favorite person on my medical team (second to K, of course!). She is friendly and chatty and keeps me laughing. We already have running jokes about silly stuff, and I appreciate her/that.

SOOOO, so far so good. I'll complete the 6 weeks of radiation (hopefully - there's always that slight chance that I'll say SCREW THIS and choose mastectomy), then my oncologist will pitch her case for Tamoxifen and I will probably agree to at least TRY it even though I'm resistant to it/scared of it, although like I told her, I can't promise I'll be able to stick with Tamoxifen for the full 5 years that it's prescribed for... we'll see. One step at a time. And the next step is Radiation Treatment #3, tomorrow at 2 pm. Sigh.

Chickweed!

2010-03-22T10:45:00.004-04:00

The radiation oncologist wants me to STOP DRINKING CHICKWEED TEA!!! I gave them a list of supplements/herbs/vitamins I'm taking, and they said everything is fine to continue EXCEPT the Chickweed. This is preposterous. I asked the nurse why, and she couldn't even tell me - she said the doctor "looked it up" and decided that "something about it" would interfere with radiation.

Green Witch sisters, help me out!! What could possibly be wrong with CHICKWEED??? Radiation already sucks. Why are they attempting to get me to give up my plant best friend?!?

Zap

2010-03-21T21:28:00.004-04:00

I'm starting radiation tomorrow morning at 8:45, and I'm feeling heavy with dread and resentment. Last Monday was the planning session, when I had the CT scan so they could map everything out, and they put the 3 tiny tattoo dots on me. Friday was the "simulation" - I was in the actual machine, but they didn't actually radiate me, they just took films to make sure everything was set up properly. Tomorrow morning is the REAL RADIATION. The first of 33 radiation treatments.

I'm feeling bitter about the fact that during the next 6 weeks, the skin of my breast, chest, and possibly underarm is likely to become red and hot like it's sunburned, possibly itchy or painful, possibly blistered and oozy and gross, making sleeping and clothing uncomfortable. The irony is that a few weeks ago, I came very close to deciding to just have both of my breasts removed. I sent my surgeon a long, rambly email explaining that I love my body for its health, abilities, strength, and usefulness, and I'm not so focused on its appearance, thus, I would still love and appreciate my body even without breasts. I had a big long list of reasons why I'd be totally fine (emotionally!) with a bilateral mastectomy. From Day One, that has been my attitude - I don't give a damn what my breast looks like after surgery, or if it's even gone entirely, as long as I'm cancer-free and can still be on the trapeze!! I was fully prepared for at least a slightly misshapen breast after surgery.

But then... I went through a lumpectomy and TWO reexcisions, so three surgeries total, and my breast still looks AMAZING. Its shape is totally normal - I cannot tell a difference between it and the contralateral breast. Even K was amazed (and seemingly surprised!) when she saw it at my postoperative check. "Britta, I took tissue out all the way up to HERE!", she exclaimed, touching the area all the way up near my clavicle. It's rather miraculous that you'd never know by looking that my breast has had tissue removed from it 3 times! Well, except for the scar, of course... but for some reason, even the scar looks beautiful to me, it really does. Again K was amazed, also, by how quickly and how well the incision has healed after being cut into THREE times.

I don't know how to explain it, but... even though I was previously feeling unperturbed by my breast's future appearance, now that I'm done with surgery and my breast DOES look so gorgeous (to me!), I'm feeling surprisingly possessive/protective of it. The rational part of my brain has decided that I need radiation. I've researched all of my options to my satisfaction, and have come to the conclusion that radiation is slightly preferable than mastectomy, and that while I don't like EITHER choice of radiation or mastectomy, the risk I'd be taking by choosing neither option is not a risk I would be comfortable living with. So I'm choosing radiation because it is the lesser of the evils. But now that the time is upon me, I'm feeling bitter and pissed off.

I feel like, my breast has been through ENOUGH by now, goddammit. I just bought two wonderfully soft, silk tank tops to wear for the duration, because I've heard from other women who have been through radiation that many fabrics are irritating to sensitive, radiated skin. If my skin is going to get irritated like that, it probably won't happen until approximately week 3...right now everything feels so normal and good and happy; I have healed so well from surgery... and I just want to leave my poor breast(s) alone. I don't want to bare my breasts to strangers every freaking day for a month and a half so they can radiate me, I just want to leave my breasts alone in this comfy, soft, beautiful silk tank top. Just let my breasts be.

Britta and the Terrible, Horrible, No Good, Very Bad Day

2010-03-20T19:32:00.003-04:00

Yesterday was one of the worst days I have had since Diagnosis Day.
It was my first day of radiation.
20 minutes before my appointment, I was eating lunch and cracked my tooth. This was the third time in 15 months that I have cracked a tooth. I cried. I would rather have another lumpectomy, than a SIXTH ROOT CANAL.
I cried all through radiation.
When I got home, my landlord verbally attacked me and announced he's not giving me my security deposit back when I move out. He said mean things that I can't post on a public blog.
Then there were 5 men in my apartment for 2 hours, to clean up black mold, inspect for fire safety, and fix the sink. I had nowhere to cry in peace and could barely breathe from the bleach fumes.
I fled to a friend's house for the evening, and cried. Then I called my mom, and cried some more.
Then I took a Benadryl and slept for 11 hours.

POP

2010-03-18T22:05:00.007-04:00

Oh, man. Ever been so stressed out you popped your stress ball?!

I don't even know where to begin. There's too much going on at once. During the next TWO WEEKS, I am doing all of the following:

- Leaving a job
- Beginning 2 weeks of dog-sitting
- Moving out of my apartment and in with my parents
- Beginning daily radiation treatments

TOO MUCH TOO MUCH TOO MUCH!! There's so much to DO that I have just been plowing through it all every day - packing, bringing stuff to the dump and recycling and thrift stores (thank you, Anneka, Cathryn, Hart family!), dishes, laundry, more packing, meeting minutes, phone calls, doctor's appointments, bills, emails, more packing, tamoxifen research, cooking, cleaning, getting more boxes, finding my W-2s, making lists of questions to ask the oncologist, blah blah blah. And so frequently these days, I think that I'm doing fine, and then realize that actually, I'm subconsciously clenching my stomach and holding my breath. My shoulders are always up around my ears. I have to put on loud music and belt it out in the car, otherwise I spend entire drives barely breathing. I'm gobbling Rescue Remedy pills like there's no tomorrow.

Sweet 15 Party

2010-03-17T08:50:00.004-04:00

I am still celebrating my Oncotype score and doing the No-Chemo Happy Dance!! :)

GREAT NEWS!!!!

2010-03-15T13:41:00.006-04:00

My Oncotype test results are in! I scored a FIFTEEN!!! That means NO CHEMO!!!! :) Receiving a score below 18 (on a scale of 1-100) means that your chance of having a recurrence of cancer in the next 10 years is LOW. People with scores of less than 18receive "little to no benefit" from chemo and thus don't need it. It is 90% likely that I will NOT have a recurrence of breast cancer in the next 10 years.

WOOOHOOO!!!!!

In other news, I had my radiation planning session this morning, and it wasn't so bad. They put 3 tiny tattoos on my skin to mark the radiation sites and that was slightly painful but not nearly as bad as all the other needle procedures I've had during the past 5 months! My radiation sessions will be every day at 2 pm from next Tuesday until sometime in May.

2-week Postoperative Check-up

2010-03-12T11:07:00.002-05:00

Had my post-surgery check-up yesterday...

Good news: I've healed SO well and SO fast! I don't have to see K for 6 months!
Bad news: I DON'T GET TO SEE K FOR 6 MONTHS!

Next up, radiation. Ugh. Also, still waiting on Oncotype score. I'll keep y'all posted...

Kindness of Strangers

2010-03-10T14:53:00.004-05:00

My recent experiences with the kindness of strangers:

1. Many of you know how much I despise the telephone! And what telephone experience could be worse than having to call your insurance company and your hospital's billing department to try and figure out why one of your medical procedures hasn't been covered by insurance? I'd been putting it off for months, until the bill for one of my ultrasounds came in the mail for the THIRD time, so I sucked it up and made the calls. I was surprised by how kind every single person I talked to was! As it turns out, my insurance company hadn't been billed for this ultrasound - so all I had to do was call the hospital's billing company and give them my insurance info. The first time I called, I didn't have all of the required info about my insurance, so I told the person on the phone that I'd talk with my insurance company and then call back with the rest of the info. I called back about 10 minutes later, and it was someone else on the line, Terry. When I said I was calling to update my insurance information, she replied, "Oh, FANTASTIC! I would be so glad to help you with that!!" and she thanked me multiple times for "calling back so promptly" and then she got me giggling by joking about the strange "Dr. Dynosaur" program (which is associated with my health insurance co.), and she was just so surprisingly cheerful and kind throughout the whole phone call. It was probably the first time I'd ever had a chatty-and-giggly phone conversation with a billing representative of a medical institution! Thank you, Terry!

2. A couple weeks ago, I went to the laundromat to do two huge loads of laundry. After I transferred it all to a dryer, I went to run errands, and returned about an hour later to fold it all and get it back in my car. But as I started to approach the dryer, the woman who works there jumped ahead of me with a smile to retrieve my clothes out of the dryer - FOLDED AND BAGGED! She told me she "got bored" and folded all of my laundry for me, and she hoped I wasn't mad! MAD?? I was, in fact, bowled over with gratitude! She smiled more, and told me to a have great day, and held the door for me on my way out... when I got home and opened the bags, I discovered the most BEAUTIFULLY folded laundry I have ever had. Super neat, tidy stacks of meticulously folded clothes...clothes which usually just end up shoved haphazardly in my drawers, if they make it to drawers at all. I seriously almost took photos to capture the beauty of her folding.

Okay, IT'S SUNNY! I MUST GET OUT IN THE SUNSHINE!

Looking for Help!

2010-03-08T10:52:00.002-05:00

Hi, local friends...
If you didn’t already know, I’m moving at the end of the month!
Mar. 31, I’ll move most of my stuff to a storage unit here in town, then live with my parents for all of April during radiation.
May 1, I will move to a new apartment in the town I’m currently living in (this is a public blog, so I’m not posting the name, but you know!), either a studio apartment or into my friends’ apartment – not sure yet!

I’m overwhelmed by everything that I need to do in preparation, especially since I will be undergoing daily radiation treatments from approximately Mar. 22 to the first week of May and I don’t know yet how that is going to affect me, what side effects I’ll be dealing with, etc.

I would love, love, love your help. Tasks I need help with anytime between 9 am and 1 pm on Sat, Mar 13 and/or Thurs, Mar 18:

1. Help me figure out which of the stuff I’m getting rid of can be donated, and which stuff needs to be thrown out. You may take anything from this pile that you want!! (Random books, VHS, kitchen stuff, kids’ toys, clothes, art supplies, magazines, bikes, etc. Like a yard sale, but free).
2. Drive stuff to the dump with me (not bags of trash - broken electronics, tires, etc). I’ve never been, don’t know where it is and where everything goes, etc. Trucks would also be helpful, for bigger things like the half dozen bikes in the basement! Dump closes at noon on Saturday.
3. Drive stuff to the thrift store downtown.
4. Help me figure out the logistics of renting a storage unit, because I’ve never done it. Where is a good local place for this? If the fee is monthly, can I move stuff in Mar. 31, or do I have to wait until Apr. 1, and how do I do that if a new roommate will be moving her stuff IN to this room on Apr. 1 and my stuff HAS to be out by Mar. 31?? Should I rent a truck from the storage rental people? How do I know what size storage unit I’ll need? I’m guessing I will need to photograph my collection of boxes & furniture to determine that?

Between 9 and 1 on both days, I will provide bagels & cream cheese and coffee! :)

Anytime between now and Mar. 24:
I’d appreciate boxes from the Co op, of various sizes (the kind that close on both ends). You can drop them off on my porch!

March 31, ANYTIME:
I would be so grateful for all the help I can get to move my stuff to the storage unit, which will be somewhere here in town. I have furniture and need people with trucks! (Cars, too, for all the smaller stuff!)
I will have ice cream available all day.

If you have any availability on any of those days, even just 30 to 60 mins because it all helps, please let me know, and let me know which task you can help with. Also, I would so appreciate it if you could circulate this message to whoever you can think of who might be able to help... I can never keep track of who reads my blog and who doesn’t!

THANK YOU SO MUCH!

:)

2010-03-01T20:55:00.004-05:00

I have decided FOR SURE to do radiation instead of having a mastectomy, and it feels good to have so clearly made a decision. Email me/send me a message if you want to know the funny story of how I came to this decision! (Women only...sorry guys!)

OM

2010-02-27T13:16:00.006-05:00

I went to yoga class this morning (thanks to B's encouragement!), and needed it badly, but it was a rough journey to get there -

I could not have coffee because I'm out of cream.
I have my period.
My car was stuck in the driveway, and I had to walk over a mile in the snow/slush.
The man walking in front of me was smoking, and ashes were coming back at me.
I was still emotionally raw due to yesterday's trauma of being stuck in the snow with a child in my care.

By the time I got to the yoga studio, I was so mad and tired I wanted to skip straight to savasana. I followed class as best I could. I couldn't lay flat on my stomach, and kept myself slightly propped up - unlike after the first 2 surgeries, this time there is a tiny bit of stitch poking out of my incision, like fishing line, and it creates tenderness. I spent a lot of time in child's pose during class, and was so focused on protecting my breast that the resulting tension in my body led to a headache.

Partway through class, my gaze was drawn to the window as the sun suddenly burst through the clouds for the first time in 5 days, and I was so giddy with relief and joy that I fell out of Warrior I and just sat there staring at the light. I tried to absorb all of that light and keep it inside of me.

When I was in a half wheel, on my back with my hips lifted off the floor, I gazed down the length of my body - at my breast that's been through so much, my crooked ribcage, my bony hip bones that suddenly seemed more bony than ever - and I lost the rhythm of my breath as I suddenly felt the tears rising behind my eyes. With nothing in my field of vision other than my own torso, I stared at it with a fear that surprised me. I suddenly realized, in a different way than I had before, there's cancer in there. And cancer is much more serious than I usually allow myself to acknowledge. I maintain my sense of humor and laugh my way through treatments and doctor appointments, but every now and then it just hits me, that cancer is serious and scary, in a way that makes my stage & grade irrelevant. Cancer is cancer.

I thought about how in a couple of weeks, I'm going to Sojourns (local multidisciplinary holistic health clinic) for new tests - a thermogram that scans 112 points on my body, and a Live Blood Cell Analysis. These two tests will analyze my entire body and overall health in a more thorough way than any procedure I've ever had before... between the two of them, we will have information about the functioning of every organ in my body, my immune system, congestion, toxic load, vitamin and mineral deficiency, size and shape and oxygen level of red cells, my BP and circulation, my teeth, my brain, digestion, tonsils and lymphs, and just everything. I was excited about this, because the information these tests yield will be incredibly helpful as I decide which treatments to do... but suddenly, when I was there in a half-wheel and staring at my torso, I was scared to know what's going on inside of my body that I don't know about. I feel so healthy, and say that I'm so healthy, and everyone who knows me knows me as being so healthy. But there were four and a half centimeters of cancer in me that I could not feel or detect, and that's clearly not healthy. I still say "Thank you for my life, my health, and the love that surrounds me" prayers every night, but... AM I healthy because I "feel" healthy, even though I have CANCER? What IS health? Who knows what else is in my body, or going on inside of my body, that I don't know about?? I am scared to know. Part of me doesn't want to know. But I HAVE to know.

I cried all through savasana.

My Life Continues to Be a Comic Book

2010-02-26T11:41:00.007-05:00

So this morning I had to drive 30 mins to go pee in a cup to prove that I, a currently-menstruating lesbian, am not pregnant.

I arrived at the oncology office and was greeted by E, the manager of the clinical trial I'm on (which requires the pregnancy test). We walked upstairs.

E: "How are you?"
Me: "Good, except I peed before I left the house, just out of habit, and now I have to drink lots more coffee so that I can pee again!"
E: laughs
Me: "I like your skirt!"
E: "Thanks!"
Me: "I like polka dots!"
E: "Me too! I don't really wear polka dots every day, though, even though I've been wearing them every time you've seen me!"
Me: "You SHOULD wear polka dots every time I see you."

Then I sit in the waiting room and take continuous sips of the rest of my 16-oz coffee while E waits patiently behind the reception desk and glances over at me every few minutes to see how close I am to finishing my coffee. I look at the table full of magazines and stuff next to me, and notice that the cardboard stand-up display staring me in the face is for "HAPPY FEET" - every woman with ovarian cancer is eligible to receive a free pair of sparkly, slip-on jelly shoes jeweled with Swarovski crystals. I snort and choke slightly on my coffee and have to turn the display to face the other way, before I lose it entirely. Hey, it sucks that you have cancer, but you'll feel better when you have Disney Princess feet!! Check out the website - the program's rationale is, "These women have already paid a heavy price, and we would like to help them feel comfortable in their returns to health." Plastic jellies, comfortable?? They're so NOT. And do men with prostate cancer receive free pairs of shiny penny loafers to keep their tootsies happy, too?? OH THE ABSURDITY.

A few minutes later, I announce that I am ready to try and pee. E brings me into the bathroom.
E: "Here's the jar, and here's the wipe."
I look at the packaged wipe with confusion. It looks like one of those "moist towelette" thingies seafood restaurants give you when you order lobster.
Me: "I'm so sorry to have to ask this, but what exactly is the wipe for?? Do I wipe the jar off with it??"
E: "No, you wipe yourself with it."
Me: "And then...put it in the jar??"
E: "No, in the trash."
Me: "Do I wipe before or after I pee?"
E: "Before!"
Me: "I'm sorry, I clearly have not had to do this many times before!!"

Then she left, I peed, and went out to give her the jar of my inch of coffee-induced pee. I was giggling.

E: "It's okay, don't be embarrassed! We're used to pee around here!"

I was more giggling at the absurdity of the whole situation, but yeah...
Now I'm feeling rather nauseated, after having guzzled 16 oz. of coffee after having had nothing but curried cashews for breakfast.

ARRGGHHH

2010-02-25T11:17:00.004-05:00

JESUS CHRIST ON A POGO STICK!!
On Friday, I went to my oncologist's office and signed up for the clinical trial that will cover the cost of my Oncotype dx test. That's the test that analyzes 21 genes in your tumor and gives you a numerical score that indicates how likely you are to have a recurrence in the next 10 years, and this helps with treatment decisions. So I signed all the forms and gave a blood sample and all of that, and they said my tumor would be sent off for the test on Monday.

Monday was 3 days ago. I just got a call saying they actually can't send away for the Oncotype test until I come in for another test, because the rules of the clinical trial are that everyone must have a pregnancy test first. AARGGGHHH. So now I have to drive 60 min round trip tomorrow to PEE IN A CUP and prove I'm not pregnant, because BEING A FREAKING LESBIAN isn't proof enough*. And now the wait for my Oncotype score is going to be EVEN LONGER.

And my car is stuck in the driveway, which is like a huge muddy river with snowbank islands. THIS IS SO STUPID.

*Forgot to mention, I also have my period RIGHT NOW. I could not be any more NOT PREGNANT.

And wow, I wondered when the day would come when my blog would need big TMI warnings...If I can figure out how to make some of these posts password-protected and accessible only to women (yes, women - sorry, guys) who email me for the password, there is SO much more I could write about...

What??

2010-02-24T17:53:00.002-05:00

My body is being REALLY FREAKIN WEIRD!!

My ears are constantly blocked. So sometimes I do that thing where you hold your nose while blowing, to try and relieve the pressure. (It doesn't work). But yesterday I was walking (5 miles, woohoo!) and my left quad was a little achey/tingly, and then all of a sudden when I did that thing with my nose, it made my quad spasm!! Just to be sure it wasn't a coincidence, I did it two more times, and it happened again! WTH??

Today, I've been doing pull-ups (it's how I release my anger when I'm pissed off at snow), and during pull-ups, the soles of my feet get really hot. WHAT??

I do not understand my body! My breast, on the other hand, is doing just fine, thanks!!

Sparkles

2010-02-22T14:17:00.007-05:00

I hung out with 4 awesome kids today, and let the girls make a wonderfully fun, sparkly mess of my nails.

Six-year-old N wordlessly hugged me about 6 times within the first half hour, as if to reassure herself that I was healthy, solid, real. Her mom told me that the kids knew a woman who recently died of ovarian cancer, so N, especially, has been talking a lot about how the cancer Britta has is different, right? The kind the doctors can fix, right? And Britta's going to be okay. I think it was good for the both of us to be together, playing beauty parlor, laughing, running through the woods, eating mac 'n cheese, like "before"!

N's 9-year-old sister, S, asked in the midst of blowing on my nails to dry them - "So, was this surgery the same as the other two? And what were the results?" I was not only touched by her concern, but impressed by how much she knows/understands about my journey thus far, as evidenced by the specificity of her questions. I was glad to be able to tell her that my 3rd surgery was my last!

And off we ran into the sparkly sunshine.

Air Purifier?

2010-02-21T14:57:00.002-05:00

Does anyone have an air purifier I could borrow until I move to a mold-free apartment?? My naturopath (A) thinks, and I agree, that the black mold in my apartment is negatively affecting my health, and stressing out my immune system. My immune system needs to be focusing on fighting the cancer, not mold. :( My ears are constantly blocked, and A looked in my ears and said my eardrums are some of the most retracted ones she has ever seen - my eustacian tubes (sorry, too lazy to look up the spelling) are not draining like they should be, as evidenced by my ridiculously huge tonsils.

So, I'm looking for an air purifier! Spread the word, pretty please, and thank you so much!

YUMMY Anticancer Food!

2010-02-21T14:17:00.002-05:00

Anticancer diet = mostly veggies, whole foods, organic whenever possible, NO SUGAR, cultured soy only, limited dairy, lots of Omega-3 and decreased Omega-6, lots of foods specifically found to have cancer-fighting properties, etc.

Here is a sampling of the anticancer meals I have been eating this month:

Breakfast, almost every day: plain goat yogurt mixed with Muesli (grains + fruit + nuts, NO SUGAR!), sometimes with stevia or berries added.

Lunch: salad - baby spinach, mushrooms, carrots, and goat cheese, with balsamic vinaigrette and ground flax seeds; a baked sweet potato with coconut oil
OR
An avocado with balsamic vinaigrette, and tempeh with sauteed broccoli, onions, mushrooms, and garlic
OR
Pasta with olive oil and a mixture of turmeric & black pepper & ground walnuts & flax seeds & sunflower seeds & nutritional yeast

Dinner: fried egg sandwich on sprouted grain bread, steamed asparagus with garlic olive oil
OR
Sweet potato/onion/peanut butter soup & bowl of steamed brussel sprouts with olive oil & turmeric & black pepper

Snacks: sheets of nori, carrot sticks with tahini, apples with PB, frozen cranberries

Desserts: 85% dark chocolate, Coconut Bliss Bars (fudgsicles made from coconut milk and sweetened with only agave nectar!!) slightly melted and mixed with frozen raspberries, gluten-free/refined sugar-free/vegan cookies from the Co op

Drinks: Coffee with goat milk and stevia, green tea, nettles tea, chickweed tea, mango juice

It doen't feel like deprivation to me!! I LOVE all of these foods!

Gratitude

2010-02-21T09:57:00.005-05:00

Ten days after dx, I posted a list of ways in which I am lucky, and things I am grateful for, in spite of the awfulness of having cancer. I'm going to do that again, because there is even more to be grateful for now!

1. I have health insurance!
2. I decided "on a whim" (i.e. thanks to divine guidance?) to get a routine physical just because I hadn't had one in years, and that's when the nurse practitioner found the lump in my breast.
3. It's amazing that she FOUND the lump, considering it was so tiny!! I have so much respect and gratitude for her. And it was Breast Cancer Awareness month!
4. I'm lucky that the lump was relatively close to my skin, because if it had been deep in my breast, probably no one would have found it for years...since it would not have occurred to me to get a mammogram in my 30s.
5. I almost ignored the NP's recommendation to get the lump checked, because I was so young and healthy, and surely it couldn't be cancer. But I did get checked. Then I was tempted to ignore the radiologist's suggestion to get a biopsy, because he was "98% sure" it wasn't cancer. But I went for the biopsy. When I arrived in the office, the surgeon spent the first 20 minutes talking about how it was SO unlikely that I had cancer that it would be okay if I chose to not get the biopsy and instead monitor the lump on my own for 6 months to make sure it didn't change. But I went through with the biopsy, and thank God(dess) I did!!
6. I was SO SURE the results of my biopsy would be benign, but I asked my mom and best friend to come with me to the appointment anyway. I can't imagine how awful it would have been to have been diagnosed with cancer when I was ALL ALONE!
7. Just two days before I was diagnosed with BC, I had reconnected with a dear close friend, helping her celebrate her 100% healing from BC. What incredible timing. She is now the most helpful and understanding person on my cancer journey, providing me with both practical and emotional support to a depth that no one else can because A) we've been friends for 12 years/she KNOWS me! and B) she just went through all of this herself! I love you, Sue!
8. My tumor was Stage I and mucinous. This is just about the "best" kind of cancer to have, if you have to have cancer - mucinous cancer is rare, found in only about 2% of breast cancer cases, and it's slow-growing and non-aggressive. My prognosis is EXCELLENT.
9. I have been majorly underemployed for the past year, barely making enough money to pay my rent and bills, and it sucks being poor. But the flip side is that while I've been poor in money all this time, I've been downright wealthy in terms of TIME and FRIENDS and LOVE. Not having enough work has meant I've had lots of time to spend with my friends/family/people I love and to put lots of energy into nurturing those relationships, and that has made me really happy. And I did not know how very, very important my web of friends would become to me. Imagine if I were one of those workaholic types who worked 80 hours a week and thus had plenty of money but no time for friendships??? I would be pretty screwed right about now. I don't have a lot of money, but I have a lot of love, and THAT is what is getting me through this. That brings me to...
10. I have THE BEST FRIENDS AND FAMILY AND COMMUNITY IN THE ENTIRE WORLD. The constant, strong, deep love and support I have been receiving from you all, every step of the way for the past 3.5 months, leaves me speechless with gratitude.
10a. I so love and appreciate the hugs, kisses, voicemails, cards, gifts, emails, pictures, hands to hold, tea, FB messages, encouragement, sympathy, validation, prayers, crystals, energy, metta, laughter, mochas, herbs, cuddles, Alias marathons, trapeze time, letters, and joy you give to me!
10b. The Just For Love benefit show that my NECCA family did for me was amazing beyond words. I was so caught up in the hugging, dancing, laughing, partying aspect of it, about to implode from joy, that I almost forgot about the money part of it and then suddenly realized, OMG, all this love & joy AND I GET TO PAY THE RENT, TOO!! :) I LOVE YOU GUYS! I wish I could personally thank every person that was there, but there were hundreds. :) Thank you, friends, and thank you, Mom, Dad, John, Nan, Austin, Adriane, Finn, Pam, and Loyall!
10c. A whole bunch of friends brought me delicious, home-cooked meals for the first week after surgery! Lasagna, mac 'n cheese, chili, veggie rice stirfry and mochi, minestrone soup and salad, chocolate, bread, spinach quiche, tofu veggie pie!! Thank you, Anna, Deena & Danny, Supriya, Serenity, Hannah & Julia, Suzanne, Anneka!
10d. My family is so awesome, helps me financially, loves me unconditionally, gives me support or space depending on what I need, and helps me in way too many ways for me to list. My mom, especially, has been with me every step of the way and I'm so grateful for the bond we share and for how honest we are able to be with each other about everything!
11. A dear friend of mine with inside knowledge convinced me to not continue with the hospital where I had my biopsy, and instead go to the hospital I'm at now, and I am SO SO glad, because...
12. I have the best surgeon EVER. (Everyone who knows her agrees! :)) None of us expected I'd have to go for three surgeries, but I kind of didn't mind, because being with K is fun! She makes me laugh so much my BP is always elevated when the nurses have to check my vitals! Ending the surgical phase of treatment is bittersweet, because obviously I'm glad to be done with surgery, but I'm truly going to miss K. She didn't just take the cancer out of my breast, she filled the cavity (so close to my heart!) with sunshine and laughter and magic dust!
13. For the past 8 months, my main source of income has been my work as a minute-taker. I'm employed by the City Clerk's office of a town in NH. I really love this work, and my bosses are wonderfully kind and understanding and flexible! The work is perfect for me right now, because most of it is work I can do at home at whatever time works best for me, in my pajamas if I feel like it, and it's not physically strenuous, and it pays well. This is exactly the kind of work that I can do in the midst of cancer treatments. (I just wish it was more than 5-10 hrs/wk!!)
14. Bronwyn's yoga class helps me so much! I'm so grateful to have a yoga class that I LOVE, at a time that works for my schedule, just a couple miles from my house, affordable, and taught by one of my best friends. This is a rare find.
15. I live 1.5 miles from an awesome natural foods co op that has ALL of the anti-cancer foods I need - organic, local, fair trade, affordable thanks to my membership, and delicious.
16. I have a wonderful naturopath, and her services are covered by my insurance!!!
17. Ditto for my wonderful chiropractor!! (But Julie, I still miss you!)
18. I have an apartment, electricity, clean water, nourishing food, a warm cozy bed, a sweet cat, a car that works, and a great laptop.
19. Despite having cancer, I am in excellent health overall. My immune system kicks ass. My antioxidant levels are through the roof. My body heals so well, and the scar on my breast is GORGEOUS. (Thanks partly to my body's healing capabilities, and partly to K's sewing. ;))
20. I live 2 miles from a CIRCUS SCHOOL, where I get to do TRAPEZE!! How amazing is that?!? It's been 4 years now but I won't ever take this for granted!
21. I was freaking out about the upcoming 6 weeks of radiation, especially because the only local radiologist is male and I absolutely cannot deal with any more men touching my breasts. But guess what, he's going on vacation for 2 weeks in March and will have a female radiologist covering for him, and I can start my radiation during this time!
22. I feel lucky that the cancer is in my breast, and not my lung, liver, brain, etc. My breasts are the only part of my body that I can remove if necessary without my life being threatened or without losing function.
23. I'm learning SO much from this experience of dealing with cancer...so much about myself and the world and life in general. It's helping me focus on what's really important in life, and letting go of what's not. I'm learning to put on my own oxygen mask first before trying to help others with theirs, which is a lifelong lesson I've struggled with. I'm learning to love and care for myself in new, radical, real ways.
24. I'm alive, and the sun is shining, and I have just spent over an hour counting my blessings!

Making diet/environment/lifestyle changes

2010-02-20T10:57:00.005-05:00

I've been thinking about what big changes I can make in my diet, environment, lifestyle, etc., in an attempt to improve my overall health and prevent a recurrence of cancer as best I can. (DISCLAIMER, which I hope I don't have to keep adding to EVERY post: I know there is NOTHING AT ALL i can do, whether it's a natural or conventional treatment, that can totally guarantee the cancer won't return! But I try anyway!)

Immediately following diagnosis, I was outraged that I, of all people, could possibly have cancer - remember that post where I was like, "I'm the freakin posterchild of the anti-cancer lifestyle!"?? It's true that there are many things I've been doing well for years already, but clearly since I DO have cancer, there are things with which I can improve. I still don't believe that cancer is entirely self-created and self-healed, but I do believe that my dietary, lifestyle, and environmental choices can impact my health greatly. I still am not sure which conventional treatments I will agree to/complete, and which I won't...but if I'm going to refuse any of the recommended conventional treatments, I want to at least be doing other things that will greatly improve my body & life, in an attempt to compensate for the lack of conventional treatment - even though I know it doesn't exactly work that way. I just don't believe that refusing chemo automatically = "doing nothing." I don't want anyone to be able to point at me and say, stupid new age hippie freak refusing treatment, don't come crying to me when you get a recurrence!

I'm not going to "do nothing," nor am I going to just sit around eating mushrooms and visualizing sparkly white light. I spent time thinking about what has NOT been working in my life/what has been BAD for my health for years, that I can change, and here's what I've come up with so far as my ACTION PLAN:

- BREAK MY INTERNET ADDICTION. I have been strongly addicted to the Internet for about 16 years, no joke - more than half my life.
- Stop eating refined sugar and dairy. I have a major sweet tooth and used to eat a lot of sugar, until just this past month when I stopped, and I'm actually allergic to dairy but have kept eating it because I love it, despite how bad it is for my body.
- Eat ONLY foods on the anti-cancer food list!
- Find work that is as enjoyable and stress-free as possible, and STOP working for under-staffed, disorganized, low-paying non-profits I always get too emotionally invested in and caught up in the drama of. I want to focus more on writing!
- Move to a mold-free, affordable, studio apartment that's just for me and my cat. I love living alone, and thrive when I have that privacy, space, freedom, quiet...
- Return to therapy to process/heal from past traumas that I've been shoving aside for years.
- Improve my sleep habits, by going to bed and waking up and approximately the same time each day and getting as much of that sleep before midnight as possible, sleep in total darkness to help with melatonin production, and learn the art of napping when necessary.
- Meditate regularly, FOR REAL! I SAY that I am a person who meditates, but really I meditate approximately once every 3 months, despite how much I INTEND to meditate more.
- Correct my vitamin D deficiency! I didn't know, until last month-ish, that I was deficient!

Many of those are difficult changes, and I don't yet have a timeline for them or a plan of how to make these changes, but I'm working on it.

I suspect that simply curbing my Internet addiction will result in these other positive changes occuring almost by default. If I am not spending so much time on the Internet, I will have more time to do things like cook and eat healthy meals (which I will be eating more mindfully, instead of in front of the computer), meditate, do creative things, read books, spend more time in nature, exercise, etc! Right now, I sign online the moment I get up in the morning, go online during every free minute I have during the day, and stay online till the wee hours of the morning, right up until bedtime!

Combatting my Internet addiction is THE MOST DIFFICULT change I need to make in my life, because it's been a strong addiction for literally over half my life now. It is not something I could ever go cold turkey with, because I use/need the Internet for so many things, and it meets needs of mine that cannot be met in any other way. I need to regulate my online time, not give it up.

I'm taking baby steps. My goals are:

A)Walk around the block first thing when I wake up, instead of immediately going online.
B) Stop eating meals in front of the computer.
C) Shut my computer down at least one hour before bedtime.

This is hard! I walked around the block a couple mornings ago (and this morning) and I kind of had that jittery, I-need-the-Internet-NOW feeling, but the walk only took 11 minutes, so geez, I should be able to handle this. The benefits of walking around the block first thing upon waking are vitamin D, time in nature, exercise, melatonin regulation, and 11 less minutes on the Internet!! As for turning the computer off an hour before bedtime, I tried that last night, and pathetically stood in my room thinking, what the hell am I going to do for an hour? And then I thought of something I wanted to write, and turned the computer back on. AAAHHHH!

I will keep trying!!

WOOHOO!!

2010-02-18T12:09:00.001-05:00

MY MARGINS ARE CLEAR!!!! :) NO MORE SURGERY!!! (Third time really is the charm, I guess!)

2010-02-16T23:47:00.007-05:00

How I understand it...

2010-02-16T17:38:00.008-05:00

I think this* is how it will happen next:

These charts MAY happen simultaneously, or will overlap in some way... I'm unclear on the timing of it.

*This is about the conventional treatments ONLY. Regardless of the path I follow on this chart, I will be continuing to work with my naturopath, and doing everything I possibly can to make anti-cancer diet/environment/lifestyle changes. That is a given, which is why I don't include that info in the chart.

Just for LOVE

2010-02-14T14:02:00.000-05:00

yesterday was "just for love," the circus benefit show that my friends put on for me at NECCA. and wow, i have tried several times now to write the story of yesterday, and i am still so overwhelmed by it all that i'm having trouble finding adequate words to explain how amazing it was. i felt loved in a way i've never felt loved before. between the audience, the show's performers, producers, directors, backstage people, volunteers, etc., there were approximately 300+ people there...all to support ME... and i... i don't even have words for how amazing that is. just writing about it is making me cry all over again! the audience of hundreds included my mom, dad, stepmom, stepdad, brother, sister-in-law, niece, aunt, uncle, and numerous friends, some of whom i hadn't seen in a long time, some who drove a long ways to get to the show, and i was so touched.

the performances were awesome! there was tightwire, solo trapeze, duo trapeze, chains, diablo, hooping, contortion, straps, dance, clowning, lyra, and juggling! i loved it all, and so appreciate the generosity of all of these performers who put so much time, work, and heart into the show. then came the finale - i was so surprised when the entire cast performed the pink glove dance!! the moment the music started, and the gloves came out, and i realized what was happening, i started bawling.

i have watched the pink glove dance video SO many times on youtube, especially when i'm having blue moments and need something uplifting, because the energy and optimism of that video is so infectious - hundreds of people dancing to "you won't be lonely, even when the sky is falling down"...it's such a comfort and reassurance to those of us who are dealing with breast cancer. so to have a room full of friends and family and people i love sing & dance to that song just for ME... WOW. in the middle of it, deena came to pull me up on stage to join them, and i was crying and laughing at the same time, trying to dance with her but mostly stumbling around like a dork because i was just so overwhelmed i could barely breathe. then lots more people from the audience came up to dance with us, too, and there was a whole sea of people hugging me and kissing me, dancing with me, picking me up and spinning me in circles, and i was just speechless with a pounding heart, soaking it all up.

it was truly one of the best days of my entire life. definitely the best valentine's day EVER!! okay, so it was the night before valentine's day... but our after-party lasted past midnight, and when someone noticed that it was officially valentine's day, we all toasted. i have always loved valentine's day, despite always being technically single, because i love the idea of a whole day devoted to love. it frustrates me when it is narrowly seen as a day for couples, because really it is a day to celebrate love in ALL of its forms - love for family, friends, your self, community, children, animals, nature, chocolate, god(dess)/spirit/etc. for those who believe, the world, and love itself. i get sad when the media/society presents this false dichotomy of either celebrating valentine's day because you're in a romantic relationship with someone or being bitter and snarky and anti-valentine's day because you're single. valentine's day (and life!) is about so much MORE than that!! i am very rarely in a romantic relationship, but i don't consider myself "single," and certainly not lonely, and my "love life" is not lacking. yesterday is the definition of my full and satisfying love life!! i LOVE my family and friends and community SO much!! during the pink glove dance, when we were all clustered together and so hyper, jumping up and down, dancing, hugging, someone yelled, "WE LOVE YOU, BRITTA!" and i couldn't see them and don't even know who it was, but i yelled back into the crowd, "I LOVE YOU, TOO!!" and it was just beautiful and perfect. i kept on dancing, and in one hand, i had the bouquet of beautiful flowers that deena had presented me with, and in the other, i was holding the valentine i had made for everyone way up high - a big red heart that said "thank you so much, NECCA, friends, and family! love, britta." i hung it on the wall of the studio when the show was over. i was carrying my 2-year-old friend ruby around (deena & danny's daughter), and she asked me about the valentine, so i read it to her and explained that i had made it for all of my friends and people i love. she smiled. "for me? and mama, and papa, and aimee?" i said yes, for her, and her mama and papa, and aimee, and all of those people who were out there dancing, and all of our other friends who couldn't make it to the show but were there in spirit... ruby looked at the valentine some more and asked, "where's my name? where's R-U-B-Y?" :) i explained that i didn't have enough room on the heart to write everybody's name, but that it says "thank you, friends," and ruby is my friend, so that includes her. and i hope everyone knows that although i did not have room on that paper heart to write everyone's name, all of their names ARE on there, and all of their love is inside my real heart... my heart that is SO SO full of everyone's love and joy and healing energy. and you know, my heart is mere inches away from where that cancerous tumor was in my left breast...and the cancer doesn't stand a CHANCE against all of the love that my heart and whole being is flooded with.

BIG BIG THANKS to
- amanda and henry, for creating/organizing/producing the show
- all of the performers, especially deena, for performing right to me and hugging me at the end
- all of the people working backstage and all of the tech people
- all of the volunteers, doing box office, concessions, house managing, decorating, and stuff i don't even know about
- the people who stayed past 10 pm to clean the studio up
- everyone in the audience, for your energy and financial support
- the person who spent his morning driving all over western MA to find the pink gloves, and the people who did other things like this that i'm not even aware of
- everyone who donated money
- the winning bidders during the mid-show auctions, and all of the bidders
- everyone who shared a piece of their heart
- my family & friends for coming to the show and supporting me yesterday and always
- my friends & family who couldn't make it to the show but are always in my heart
- elsie & serenity and ALL of NECCA
- the universe
- you reading this

Oh, What a BEAUTIFUL Day!

2010-02-12T18:49:00.008-05:00

I feel so good right now. I enjoyed work this morning, then went home for 20 minutes - long enough to open a surprise package from my friend Molly Kate and ooh and aah over the lovely thoughtful gifts inside, and then I went to pick up Cathryn and we had a trapeze lesson with Bronwyn! (Which was a bday gift from my awesome parents!) It was my first time on the bar in about a month and a half, is my guess...and I was SO HAPPY TO BE BACK!! Yes, trapezing 21 days after my last surgery and 4 days before my next... Stupid silly cancer can't stop me!!

There was only one trapeze trick that I did that resulted in me yelping "OOWW OWW MY BOOB!!" and scrambling off the bar, ha. That would be this one, the meathook. This is a photo of me doing a meathook on the OTHER side. :)

While I was trapezing, the hospital called my cell phone...so I scrambled off the bar to listen to someone from the surgery department give me the instructions for Tuesday: arrive at 7:30 am, don't eat after midnight, don't take vitamins, don't wear jewelry. Then I hung up the phone and got back on the bar!!

I am so lucky to have awesome friends who support me literally/physically, as well as emotionally!!

I was so, so happy today!!

Multi-tasking

2010-02-11T00:43:00.003-05:00

I wanted to hula-hoop. But I had to read this 15-page consent form for this clinical trial I may be eligible for/want to join. SO....

Also, I have been recording my most recent doctor's visits - 2-week post-surgical follow-up with K, consultation with medical oncologist, and consultation with radiation oncologist - on my MP3 player. This way I don't have to stress out trying to take notes during the visits. But it sure is funny to be walking downtown with my earbuds in, not listening to music on my MP3 player like normal people, but listening to doctors talk about mastectomies and lymphedema and chemotherapy.

Anti-Cancer

2010-02-09T18:41:00.005-05:00

well, my meeting with the medical oncologist, dr. C, was frustrating and disappointing. she didn't tell me that i probably won't need chemo, which is what i had (perhaps naively) been expecting. she didn't flat out say i DO need chemo, but i definitely got the sense that she's in favor of it/recommending it - i mean, that's basically her JOB, i guess... but i didn't get the sense that she was recommending chemo because my specific situation warrants it, but more because chemo is the standard of care. she basically only talked about the benefits of hormone therapy (i'm assuming tamoxifen - we didn't get that specific), and chemo, or OVARY REMOVAL instead of chemo. i don't think i need any of those options, and i don't believe they are my ONLY options, as medical oncologists say.

she showed me this computerized tool that calculates a person's risk of recurrence, based on information that you plug in - age, general health, tumor size, grade, and stage. this tool said that with lumpectomy + radiation only, my estimated risk for recurrence in the next 10 years is 35%. it also says that if i do 5 years of hormone therapy, my risk falls to 22%. if i also do chemo, my risk of recurrence becomes 15%. but an online calculator tool doesn't know anything about me personally. i asked, knowing the answer was no, does this calculator take diet and lifestyle changes into account? no, of course not, there's no way to measure that. it also doesn't take into account the fact that my tumor was the MUCINOUS type, which is non-aggressive and unlikely to spread.

that calculator assumes that the person it is assessing is living in a "normal" way - e.g. living a mainstream lifestyle, eating a mainstream diet, and not making any anti-cancer lifestyle or dietary changes after being dx'd with cancer. it says that my risk of recurrence is 35% "without treatment," because it wrongly equates "no chemo/hormone therapy" with "no treatment." it cannot possibly know that during the past several years, i have made big improvements in my diet, environment, and lifestyle and that i am continuing to do so.

the online calculator does not know the following:

- i strongly and consciously practice loving/being a good friend to myself
- i never smoke, drink, or do drugs
- my weight is ideal for my height
- my diet has steadily improved over the years and continues to do so. as a teenager and throughout college, i ate fast food, soda, junk food, white flour everything. now, i've been a vegetarian for 9 years, and eat lots of organic vegetables. since reading "anticancer" by dr. david servan-schreiber, i've started eating a very specific ANTICANCER diet. i haven't had refined sugar in almost a month. i am eating organic fruits and vegetables, sprouted grains, limited dairy, seaweed, turmeric, onions, garlic, berries, etc.
- i found out i was deficient in vitamin D and am now supplementing
- i'm seeing a wonderful naturopath, who has me taking many supplements with proven anti-cancer properties, as corroborated by dr. servan-schreiber's book (melatonin, green tea extract, medicinal mushrooms, etc)
- i get plenty of rest and sleep
- i have THE BEST FAMILY AND FRIENDS IN THE WORLD, who love and support me so, so much. i am swept up in a tidal wave of love every day. my social/support network is better now than it has ever been in my life.
- i exercise! this is new for me in the past few years! i am obsessed with trapeze, and also do yoga regularly, and walk a lot, and rollerskate, and hula hoop!
- i receive immeasurable healing from the michigan womyn's music festival every year
- i am introspective, self-aware, self-analytical. i have several strategies for exploring/healing what's going on in my psyche that may impact my cancer. i meditate, journal, work with psychotherapists off and on, read helpful books, talk with friends and family, pray, etc. i live a "conscious life."
- i am now more conscious than ever of avoiding whatever environmental pollutants i can, whenever i can. i used to be oblivious to this. but now, i reduce my use of plastics, and for several years, i have used only natural body care and cleaning products
- i grew up on cape cod, where the rate of breast cancer is 20% higher than the rest of the state, but i moved away!

and there's even more that i'm just not thinking of right now. because of all of the above, my risk for recurrence is MUCH LOWER than that online calculator can possibly know. i don't know exactly why cancer grew in me... but something about my life/my body was "fertile soil" for cancer to grow in. by the time a tumor gets to be as big as mine was, it's likely that it had been growing for 8-10 years. so it's likely that the tumor started growing several years ago at a time when my body and lifestyle were very different - LESS healthy than today. i've made big improvements in my health and life over the years, and keep continuing to do so. i am doing everything i can to make my life and body TOTALLY UNWELCOMING to cancer. what's exciting is that i am learning lots of SPECIFIC ways in which to do this, thanks mostly to my wonderful naturopath and dr. david servan-schreiber's "anticancer" book (which K herself recommended to me!). i'm learning that there are very specific ways of creating a "terrain" (as david puts it) that cancer cannot thrive in - it's not as simple as just striving to "be healthier." for example, i would not have intuitively known that drinking 10 cups of green tea per day, or eating turmeric and black pepper and olive oil in combination with each other, or having optimal levels of vitamin D helps fight cancer. but now that i DO know, i can do these things.

there are so many GREAT things i can do (and DO do, and will CONTINUE to do!) for my body to make it all-around healthier and stronger, and a body that cancer cannot be at home in. i will treat my body with so much LOVE, and nourish it well. it will be a lot of work, and these lifestyle/diet changes are major, and must be done in symphony with each other - it's not like i'd benefit from just sprinkling a bit of turmeric on my food every now and then. no, i will strive to eat ONLY anti-cancer foods, and exercise regularly, and diligently take my supplements, and do yoga regularly, and deepen my meditation practice, and make big changes in my work life so that work nourishes instead of drains me, and continue to play and laugh and spend quality time with my family and friends, and go back to therapy if that's what it takes to work through some lingering childhood issues and past traumas, and research environmental carcinogens even more so that i can avoid them as best as possible, and ALL of that. i am not your average girl, i'm just not. so that stupid online calculator can BITE ME.