Saturday, December 31, 2011

Other Blogs

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

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!

[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!!!

Sunday, November 20, 2011

Just say NO

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.

Wednesday, October 12, 2011

What do you do when a nightmare comes true?

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.

Tuesday, October 11, 2011

Conflicted

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?

Thursday, October 6, 2011

Double Cancer

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.

Wednesday, October 5, 2011

WTF, Universe?

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?

Saturday, October 1, 2011

Pinktober

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 31st 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/

Wednesday, September 28, 2011

Against the Tide

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!

Saturday, June 25, 2011

Breast Cancer Action Interview!

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

Saturday, May 14, 2011

Trapeze!

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

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!!

Tuesday, April 5, 2011

Taking a Look at Prevention Resources

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 and 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!

Friday, February 25, 2011

An update, after 3.5 months!!!

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!!!)