Well, I’ve started a blog so I should probably keep it up - they do say blog responsibly, after all. The good news from February 29th is that I tested negative for BRCA mutations. The relief was palpable; Tomas was with me in the doctor’s office when the (really cute, male) nurse told me, and he got up and came across the room to hug me.

It was just the beginning of a long consultation appointment. My oncologist sat me down for a thorough discussion of what we do now. My risk according to the Gale model - a statistical model they use which, despite its flaws, at least gives them something to go on - is 31.3%. And there was ovarian cancer in the family, which is nothing to sneeze at. So the doc laid out the surveillance plan. Every 90 days: check in with her for a consult and a breast exam. Every year: mammogram and breast ultrasound. Every year: MRI. Alternate these so that one or the other is being done every 6 months. No problem, right? Wait, there’s more. Every 6 months, a C125 tumor marker (blood test to look for ovarian cancer). Every 6 months, a pelvic ultrasound, also to look for ovarian cancer. These tests must just make people feel better; apparently ovarian cancer is hard to detect, moves fast and kills often. I’m feeling very aware of breast cancer statistics and facts, and very much in denial about ovarian cancer. It’s one I don’t really want to acknowledge at all - a little too scary really. But I’ll go to the tests and be a good sport.

And we had a conversation about Tamoxifen, a cancer drug that blocks estrogen receptors and is being tested as a preventive medication in high-risk women. Unfortunately, you have to take it for 5 years; it messes with your reproductive system (i.e. you can’t get pregnant while you’re on it; it’s not a contraceptive, but it could really screw things up); and it has many of the same side effects as having your ovaries out (dryness, lack of sex drive, hot flashes, depression, moodiness, I think there were several more…). I wasn’t trying to be flippant but I did ask why not just get my ovaries out then. She reminded me that they are in fact serving a useful purpose in there, primarily feeding estrogen to important areas like my bones - a little connection I forgot about. So the real question became one of my reproductive plans. Wow, that wasn’t something I was planning to discuss that day! If I want to have kids, I can’t go on Tamoxifen. If I go on Tamoxifen, I can’t have kids till I’m off it, which would be at age 39 if I start the drug now. My doctor subtly reminded me that I’m not getting any younger; it will only get harder to have kids as I let the months and years wear on.

The pressure was on; I wasn’t ready to give a committed answer to the question. Time is passing, the clock is ticking; now it’s not just my biological clock, but the cancer clock too. The sooner I can take this preventive drug, the more potential good it can do me. It’s a nasty-sounding cocktail but the couple of studies that have been done show it could reduce my risk by 50%. The idea of having a risk as low as 15% is one I’d already banished to the rosy-colored past, but with Tamoxifen it could be a real possibility. Makes you think, truthfully.

 Unable to give a reasonable response to the dilemma, I opted for more time to think about it. I will have to see my oncologist every 3 months, so we’ll have plenty more opportunities to revisit this discussion this year. My next appointment is in May already. In the meantime, no Tamoxifen and no kids.

And no BRCA mutations. I don’t have the “cancer gene;” at least not for the moment. There are unanswered questions I will have to live with. There could be a BRCA3, or a BRCA4, that they haven’t discovered yet; I could have that one. If they do discover something in the future, they can go back and re-test me for the new genes. So as my sister and I mused… this doesn’t mean I’m out of the woods. I’m in the woods, and I may as well get used to the scenery because I’ll be here for the long term. But for now, they’re a bit clearer and brighter than they might have been. And that’s feeling really good right about now.

Most of this post is an email I wrote to Alex, my sister, tonight: the night before I get my test results. It’s just a test, I think… then I remember it’s a huge test, a $3000 test, the one that will dictate the outcome of the rest of my life. That life… it all starts tomorrow. I wonder what it will look like.

 here is the email:

well, tomorrow is D-Day. Or T-Day. or BRCA-Day. It’s such a weird day, too – February 29^th. This day doesn’t even exist most years, damnit - there won’t even be an anniversary for this moment! I keep having to remind myself to call in and make sure they have my result before I go in for the appointment so I’m not going for nothing. But it’s rather weird to think they may already have it and only I don’t know yet.

And I was fine all week till about 7 pm tonight. Sigh… eventually I suppose you have to pull your head out of the sand and peek at what’s coming… and in a few more hours, there will be no place to hide anymore.

I don’t know whether to try to prepare mentally or not. Do I try to visualize what it would be like to hear that I’m positive? Tried that once a minute ago - pretty scary, had to stuff my head back in the sand quickly (funny, it worked just fine a few days ago). Mostly I think about the options I’d have in either case. And the fact that you’re next, and how scary that is, because no matter what happens in my case, you’re not off the hook. So in any way we look at it, this is just a beginning; we just don’t know of what, yet.

I get so angry whenever I think about those options, too. They always say that I can just opt for surveillance. What the hell is that??!!! You’re just waiting for the day they find the cancer?! The one you have an 85% chance of getting?? no no, you’re actually LOOKING for it. Oh, much better. That changes… absolutely nothing. Nothing proposed to help prevent it (aside from option #2 of course - just nothing that could bolster the ’surveillance’ idea with a little proactive action. Here, eat some vegetables and flax oil while you wait. Does that seem futile? It’s ok - just wait, and watch. Look closely. It will give you more time to think about how stupid that decision was, when you finally do find it). It’s like saying well, you’re on the train tracks and the train is coming, but we think it might help if you turned around so you could see it coming. That way you’ll know a little earlier.

What??!!! What is that??!! Get the FUCK off the tracks!!!!!!!!!!!!!!!!!!!!!!

But then, you think about that some more. Ok, yeah, get out of harm’s way, duh - at what price? We’ll just take your breasts, your ovaries, everything that makes you a woman and gives you self-esteem, sensuality, wholeness, self. You’ll never be able to have children of your own; you’ll be thrown into premature menopause, dry up and lose your libido. You may as well lose it because sex will hurt from now on. Your relationship may run aground over it all. You’ll still have a chance of getting cancer because we won’t get all the tissue out. You’ll be physically disfigured - even if nobody can see it from the outside, you’ll feel it - and perhaps never recover the full motion or feeling in your arms; they may always be slightly numb. You’ll go into major surgery and be in physical and emotional recovery for two years or so, in the midst of the prime of your young life. You’re 34 years old - you didn’t have any other plans right now, did you?

Well ok then. Maybe I’ll just sit back down on these tracks here. The view is nice, and I rather like it, at least until the train comes.

I can only hope, hope hope all night tonight and all day tomorrow that this will not have to be my choice. Because honestly, right now, I have no idea how I’ll make it. I’ll need weeks, maybe months to figure it out. I think it’s pointless at this point to try to rationalize the two possible outcomes (or 3 actually, there’s always “indeterminate mutation” - a fun one). I can’t be rational right now, so I’ll just hope all out, regardless of whether or not that is hopelessly optimistic, blind, or otherwise futile or stupid. And anyway, it’s my last chance to have this hope. Trying to “feel” how it will feel to know is not working and is probably not going to soften the blow tomorrow, if it comes. The anvil will fall just as hard whether I go to sleep right now or try to calm myself with logical thoughts and plans. And it may not fall at all. A 50/50 chance says, I’m fine and hey, my cancer risk is only (woohoo ONLY!!!) 31.3% for life. I can be a happily converted vegetarian, start running again, walk my Avon Walk and live my life.

Well, that helped a bit I suppose. I’m going to go turn up the music and do some cleaning. I’ll let you know. call me tomorrow evening. I should be home anytime after 4.

love, celia 

On Friday I had an MRI. This is necessary, it seems, because of a few things. My breast tissue is so dense (and might we say lumpy) that the mammograms we did in November were pretty darned hard to read, and will continue to be so in the future. According to the Gail Model, a statistical tool for assigning you a best-guess risk for breast cancer, my risk - even without any word on genetic status - is 31.3%. The American Cancer Society (I think?) now recommends that anyone with a 20% or higher risk add MRIs to their regular screening methods, so there you go. And, during my recent visit with an oncologist to discuss all of this, she found a couple more lumps that - what the heck - we might as well look at right away. And last but really not least: should my test results come back positive, I will have to make some decisions about surgery, and the MRI will help us determine whether or not I’m clear for takeoff, so to speak - no funny precancerous tissue lurking in my breasts or chest somewhere that needs to be dealt with in the process.

So anyway, there I was face to face with this REALLY huge machine. And it wasn’t that bad at all. I’m not claustrophobic, so that’s a good thing. And they give you headphones with relaxing music while you’re in the tunnel. You’re not even in there the whole time; you’re rolled in and out so they can change your position or add an IV drip with a contrast dye and then send you back in. Maybe the best thing, though, was that the technician was so nice, helpful and reassuring. She took time before the test to explain how it works; she gave me a lozenge and told me she’d always let me know when I could take a moment to cough before she started another image sequence (I’m still getting over a cold and was worried about causing vibrations in there if my throat started to act up!) and answered my concerns about false positives in a way that made perfect sense to me: yes, there are a lot of them with MRIs; in my case, with my risk, the benefits of MRI outweigh the risks of those false positives. We just need to see what’s in there, and this is the most accurate method.

For some reason it struck me as ironic that after all my worry and apprehension, the MRI was no big deal, but then I got hung up in the office over a hive in my eye. Seems that I had an allergic reaction to the contrast dye they used partway through the test. My eye started to itch like crazy and I couldn’t wait to get out of there so I could scratch it! I thought it was just that a hair or something had gotten in my eye, but when I got to the changing room and looked in the mirror, there was a little pocket of swollen skin in the corner of my eye and it was quite red. I figured I’d just ask the nurse if it was normal for people to get an itch or something from the machine, and she promptly sat me down in the waiting room to literally wait it out. Every few minutes she’d check on me, bring me more water to keep flushing the dye out of my system, and peer into my eye to see if it was getting any better. After half an hour, she decided I could go, but not without a new little card for my wallet that declares that I am allergic to Gadolinium. Next time I get an MRI - and I’m sure there will be a next time - they’ll have to give me a Benadryl or even Prednisone before I go in.

You know you’re getting old when your list of drug allergies that you have to write on all those doctors’ forms starts to become an actual list!

Still, for anyone out there who is worried, I found the MRI to be totally nonthreatening. The machine does make an awful lot of whirs, clicks, taps, banging noises and downright LOUD hammering sounds, but you get used to it and overall, it’s actually kind of relaxing. Until the eye starts to itch.

On Friday I had an hour consultation with an oncologist. I’ve never met an oncologist before. Maybe I have, long ago in a hospital far away when I was too young to really understand. I knew my father was sick… I even vaguely knew he was dying. I was 14 - not so very young, but it seems that way now. I didn’t know what an oncologist was. I knew that cancer = death.

Hospitals scare me; I’m sure they scare everyone, but when I get in there and see those huge machines, I think very science fiction-esque thoughts. You might die here. Whatever is wrong with you, this place will make you worse. You will be poked, prodded, tubes inserted, scans performed, drips connected to your veins, poisons injected. People who are ok do not get hooked up to these machines - or pushed inside them, or placed beneath them, or whatever. I am normally a pretty rational person; but when I see a machine, any machine, looming over me in a dimly lit room I feel something very close to panic. Adrenaline - fight or flight - a lump seals my throat, eyes burn, memories flood in. It’s all I can do to reassure myself that I’m there for something quite routine, nothing to get worked up about. 

Conditioning, I think… I already know what happens in these places, I’ve already watched someone I loved waste away under these lights, body pumped full of toxic cancer-fighting chemicals, chest burned dark from radiation treatments, tortured and unable to speak, unable to describe his pain. Hospitals smell bad (like death I suppose). Everything makes that humming sound. Everything is labeled. Bottles and bins have warning labels, radioactive symbols, bright neon colors. On the sides of machines, inspection labels with dates on them, official-looking seals of approval that this apparatus is good to go on doing its thing with another few thousand patients. Some of them look like they’re from the next millennium; some look like they’ve been there since the 70s. I find myself wondering what a single machine must cost. Can’t have to budget for that more than once every 10 years, I’m sure. What if they are like the space shuttle, built decades ago and aging away quietly in their sterile rooms? No labels say “trust me” as you are rolled over to the machine, a lever is rotated or a button is pressed, a huge arm lowers itself or a tower advances towards you, a black screen staring at you or glass plates extending towards your breasts, chest, torso, waiting to capture, squeeze, press, examine, scan.

None of this happened to me on Friday. I walked past the big machine and had a simple consultation and exam, with plenty of waiting in between. The higher the level of specialization, the longer you wait. Family doc: 5-10 minutes. OB/GYN: 15-20 minutes. Oncologist: 20 minutes in the waiting room, 30 minutes in the examining room, another 15-30 minutes in between (”put this gown on, I’ll be right back”: famous last words. I spent a solid half hour sitting on a table wrapped in a damn piece of paper, thinking how badly I needed to pee and knowing that the second I ducked out to look for a restroom, she might return and leave again before I could get back, and I’d be wandering the halls in jeans and a square pink sheet).

We talked about my family history, lots of red flags there. I’m the only case she has ever seen, in fact, with this kind of cancer history on both sides of the family. I asked lots of questions about everything I could think of, all the what-if and what-now and what-do-you-think questions that I already knew the answer to but had to ask so I could say I did. She palpated my breasts; agreed with the radiologist who in November had declared them a “garden full of cysts.” She found at least two more lumps that nobody else had noticed. They are peripheral, close to my sternum. Nowhere the mammo unit could even see, not where they scanned with the ultrasound. Great. She uses the word ‘worrisome’… I flood her with more what-now and what-if questions. I need to come back for an MRI. Another very big machine. I don’t schedule this myself; they will call me with the appointment. So I will wait. Oh, for a glimmer of control over this process… anything to make me feel like I am involved, deciding things, weighing options.

They took blood, too. I almost forgot, it was so rushed. The FedEx truck was coming soon and they wanted to ship my blood out that night to Salt Lake City (”so it doesn’t sit around until Monday and get old”). The destination is Myriad Genetics Lab. A $3000 test, complete profiles of the BRCA1 and BRCA2 genes to screen for any mutations. Results in 3 weeks. We schedule a follow-up appointment for 3 weeks from the day; they won’t tell me the result on the phone. I will have to come into the office to hear it in person. I could test negative. I could get on with my life as an average woman with average risk. Average lumpy breasts. Average likelihood of living in happiness and peace, of having children, of growing old. Or…

I am not afraid of needles, but I always look away because I know I will over-anticipate the prick. As the blood flows out of my vein into the tube, I look back and watch. Two full vials and another small one, just in case. I watch the vial fill and fight back tears. Thinking about where that blood is headed. What it will tell us. What it means. My future in a little plastic tube.

This is my blog about breast cancer, preventing breast cancer, activism (especially for young women at high risk - we need to get informed and get busy advocating for choices, information and cures!) - and of course, food and how it can be your best weapon in the fight to prevent, cure or survive cancer.

I’ve not found a good source online about cancer diets; there are a lot of proprietary sites (”buy our $200 juicer and it will save your life!”), medical sites with generic advice (”eat your veggies and take vitamins!”) but not much in the way of real discussion, evaluation of theories, and recipes, for a proactive food-based approach to an anti-cancer lifestyle. I’m hoping to help fill that void, in part because I am fascinated with food and in part because I am very much hoping that my food choices can and will keep me from being another scary statistic.

I have had 3 relatives with breast cancer and another with ovarian cancer. According to every doctor I’ve seen, that’s pretty alarming. In November of 2007, my gynecologist found two lumps in my breasts and so began a journey beyond distant speculation about my possible risk and deeper into knowledge. 

I’ve been learning volumes about this disease, what it has done to women (and men) in this country and what it could do to me. The books, magazines and articles I’ve accumulated amount to a small library. I’m sharing some of this information here because I believe knowledge is power, and we all need a little more power (and control) in a situation like this. I don’t have cancer. I’m one of the lucky ones, not only because I’m healthy - so far - but because I am informed, and because I have access. Access to information, to experts, to good advice and lots of medical technology.

But underneath all of that, I believe that our first line of defense is within ourselves. The Western world did not used to be plagued with degenerative diseases and cancers. Something’s gone wrong along the way. It could be chemical - pesticides, preservatives, dyes, who knows. It could be environmental - radiation, pollution, toxic waste, living downstream from a nuclear test site, light pollution. It could be the Standard American Diet - meat, white bread, genetically modified foods, McDonalds.

There’s no way to avoid it all. You could drive yourself insane thinking about that, and never dare to leave the house or consume anything besides a bit of organic grass here and there. You have to live; the real key, I think, is to live well. Don’t eat crap that will make you sick. I’ve read and read and asked and asked, and come up with what I believe is probably the most targeted and safe and healthy anti-cancer diet possible. Food is your daily fuel. More than that, it can mitigate the effects of all those other things; it can detoxify your body, ease your mind, strengthen your immune system and nourish your blood and bones so you will live long and beat disease in spite of the random toxins spewing forth in your general direction. Your house, garden and body are your temple. Keep them clean and you will thrive. This is my way of taking back some control. I hope you’ll join me on this journey of a lifetime.