Sorry, can't talk. On my way to a cancer appointment.

Yesterday, I started reading S. L. Wisenberg's The Adventures of Cancer Bitch, a book based on the author's blog about her experience with breast cancer. Last December, I had pitched the editor of Rain Taxi a review of the book, and he accepted. I received an advance of the book in February, but I've been too terrified of it to pick it up until now; the deadline is now looming, but I can't even begin to imagine how I can read it, let alone review it without some part of what I'm going through being reflected in my reception and assessment of it. (And I'll probably ruminate more on that in a later post). But enough for now. The point is, I was reading this book about cancer on the bus to my genetic counseling appointment. This information is important if you want to understand what happened next.

So after arriving downtown following a harrowing journey from Hyde Park (a car hit the 6 and we all had to get out an wait for another bus, even though the bus didn't seem to be affected nearly as much as that poor woman's car), I am accosted by one of those very jaunty, very theatrical solicitors in windbreakers who make eye contact with you despite your best efforts to avoid it, who chirped, "Hello! Do you have a minute for..." and if I had let him finish he would have said "the children" or "the environment" or whatever organization he was collecting money for (I would like to interrupt this already very long sentence to say that I'm at once sensitive and skeptical of these people; when G. first moved to the city, he collected money for an environmental group in this manner and from what he tells me, it's a horrible way to humiliate yourself and a shady operation, to boot) but I was trying to catch another bus so instead of just mumbling "Sorry" and staring at my feet, I blurted out, without really having any conscious control of my words (though Wisenberg's were almost certainly still being processed by my brain), "I'm on my way to a cancer appointment." And he said, "Cancer?" loudly and incredulously. And then, mercifully, the bus arrived, and I boarded.

It wasn't until I sat down that I really registered what I had said. I had wanted to say something to get him to leave me alone, but instead I said something that meant absolutely nothing. What does that even mean, I'm on my way to a cancer appointment? That I made an appointment with cancer, like I do the dentist, and the receptionist will call me from the waiting room, "The cancer will see you now"? I was not, in any meaning of the word, on my way to a cancer appointment. I was on my way to a counseling session with someone who would refer me to a lab where my blood would be drawn and sent off to a processing facility where technicians would analyze its genetic contents to find out if I had a genetic mutation that may predispose me to certain kinds of cancer. (But, in my defense, that's a little wordy to bark at a dude in a windbreaker on Michigan Avenue.) Then, I felt guilty. On the Curb Your Enthusiasm rerun G. and I watched the night before, Larry kept using his mother's death as an excuse to get our of things--dinner parties, bat mitzvahs, small talk--he didn't want to do. And I realized I'd totally pulled a Larry, but I had no ammo. At least none yet.

So I picked back up Wisenberg's book and read some more about her treatment at what she calls "Fancy Hospital" because "the first floor looks like a hotel lobby" and then get off the bus and walk through a revolving door and suddenly am standing in a hospital that very much looks like a hotel. And I realize, I'm standing in the same lobby she did. And it suddenly felt more like I was on my way to a cancer appointment.

The counseling session went well. My counselor was compassionate, thorough, and professional, and the information she presented was helpful, if not terrifying. In all my fervor for my breasts, I'd completely forgot that, if I have the mutation, I have a much higher risk of getting ovarian cancer, as well. Oh, and don't forget melanoma, stomach, and pancreatic cancers, too. The only difference is with those last three is you can't prevent them with prophylactic surgery (walking around without skin would be drafty). We discussed what I might expect if I'm found to have the mutation, and how I might go about "treating" it. Then I got my blood drawn, and it was out of my hands. Well, it always has been of course. If I'm positive in two weeks, when I get the results, I'm positive now. But now I'm one step closer to knowing.

Going to vom

I'm leaving for my appointment with the genetic counselor in about five minutes, and I feel like I'm going to vom. About an hour ago, in a misguided attempt to literally coat the butterflies in my stomach with delicious, creamy hummus, I ate a bag of carrots and the aforementioned hummus and now I am so nervous that I'm feeling ill. I don't know why I'm so anxious. Today is a good day. Today is the day I've been waiting for for months. Today is the day I take control and get tested. I won't know the results for weeks. So why am I so nervous? Knowing your life will change is so nerve-wracking...

Genetic testing

I'm scheduled to see a genetic counselor tomorrow; I'll get my blood drawn and will know in about two weeks if I, too, carry the mutation. I'm nervous but thrilled to be moving forward with the process. I was denied insurance coverage for the testing from my HMO, but now that hubby has a gorgeous, shiny, accomodating PPO, I can be proactive about this and get it done, at last.

On quitting smoking and finding breast lumps

About three years ago, I found something in my right breast. It was a real, honest to goodness lump: about the size and consistency of a halfway melted frozen pea. And it hurt. A lot. Indeed, it was pain that alerted me to its presence. Once I found it -- after the shaky-handed, cold-sweated, stomach-dropping discovery -- I couldn't stop touching it. It was as if I had to keep reminding myself that this was real and that it was probably going to kill me.

I decided to allow myself exactly one day of imagining worst-case scenarios. I envisioned the instructions I'd leave for my funeral, the songs I would ask to be played, the tearful things my friends and family might say in my honor. But after one day, I couldn't stop. It had become an idée fixe. I couldn't just let it go.

The day after I found the lump, I left for a business trip to San Francisco. I remember calling my doctor from the BART somewhere between SFO and Powell Street. Because of my insurance, I'd have to see my primary care physician before being referred to a specialist; I knew that this process wasn't going to be quick. I scheduled a consultation for the week after I returned and tried to put it out of my mind. I need to concentrate on something else.

That's when I decided to quit smoking. On my mental list of things to do before I turned 30, quitting smoking was number one (number two was getting married, which I managed to slip in right under the wire). Over the ten years or so I had been a smoker, I had vacillated between casual smoking-only-while-drinking to heavy pack-a-day smoking. I'm not sure I ever even really liked smoking; the first cigarette of the day (which, for me, usually didn't occur until sometime in the afternoon--I never was a cigarette and coffee girl, except for the semester I spent in Paris, when I might as well have been injecting nicotine intravenously) made my stomach queasy. But it was a habit. It was part of my identity. I was a smoker.

But then, suddenly I wasn't. I don't remember the exact date. I don't remember my last cigarette, mostly because I smoked it without realizing it would be the final hurrah. I just stopped. For that first week in San Francisco, I even had a half-empty pack in my purse. I wasn't ready to throw it out, but I knew I wasn't going to cave in and smoke. Being in Northern California, where smoking is only slightly less reviled than, say, child abuse, it was easy to not smoke. It was banned in bars, where, back in Chicago, I did most of my damage. And then the fierce head cold I got midway through the trip helped me get through the first crucial days (even in my smokiest days, I never would smoke through a cold -- phlegm and tar don't mix, kids).

When I returned, I saw my doctor. She confirmed what I knew: there was something there. I was referred to a specialist, with whom I scheduled an appointment two weeks later. But by the time I saw the breast doctor, I couldn't find the lump anymore. It no longer hurt. I imagined it had, suddenly aware it had been discovered, snuck off to some corner of my anatomy to puss and ooze and infect. The doctor, using an ultrasound, couldn't find it either. She concluded that it had probably been a hormone-related abnormality and that I shouldn't worry too much about it. She also said that breast cancer doesn't usually hurt. So whatever it was, it likely hadn't been malignant.

From the day I found the lump to the day I learned it was nothing to fear, three weeks had passed, and I hadn't smoked once. Now that I knew I wasn't dying, I considered lighting up in celebration. But I didn't. It seemed so incongruous to me that I was voluntarily admitting carcinogens into my body while my body, in its own strange cellular division, could be manufacturing the lethal stuff itself. I just couldn't stomach helping it any more.

So it's been three years since I found that lump and quit smoking. I haven't had a single puff since. I only occasionally get cravings (mostly in the afternoon, mostly in the summer, mostly at backyard barbeques or music festivals when the sun is at the right angle and I have a cold beer in my hand), but I've never given in to them. But once again, my right breast hurts. I realize it could be entirely psychosomatic (in fact, it started aching right after my father first told me about the pernicious mutation in our genetic code last fall). I've been poking around in there ever since (and maybe all that prodding is just adding to the discomfort), but I can't find anything. I had my first mammogram in November, and nothing looked out of order in there. But I can't help but be fearful all over again. Because this time, unlike three years ago, I know what might be causing it.

I keep coming back to those words from the breast doctor – breast cancer doesn’t hurt. But then I remember what my second cousin, currently being treated for breast cancer, told me in November when I asked her how she found the lump. “It hurt,” she said.

Pack your fun bags!

I registered this blog domain today because I'm about to embark on a potentially life-changing search for answers to questions about my genetic heritage. BRCA2 deleterious alteration S1760X has been felling members of family for the last 80 years: we've had breast, prostate, bladder, brain, colorectal, ovarian, and bone marrow cancers. But it's the breast cancer I'm worried about. My father recently tested positive as a carrier for the dreaded mutation; that means there is a 50% I'm positive, too. If so, I have an 85% chance of developing breast cancer in my lifetime (the average in the general population is 12%). And if I'm positive, I'll have to confront the difficult decision about what to do with my breasts. My cousin, whose father, my father's brother, also a carrier, tested positive in late 2008. She is having bilateral prophylactic mastectomy--a fancy term I just learned that essentially means lopping off both healthy breasts before cancer manifests--at the end of this month. The could be me, soon enough.

I intend this blog to be a personal chronicle of my quest to learn if I, too, carry this genetic time-bomb and my decision whether I will need to say, as the title of this blog implies, goodbye to boobs. Expressing such private agonies in a public forum is, of course, a very twenty-first century response to crisis; technology allows us to write diaries that all the world can read. Blogs, these ephemeral musings, often become books, more permanent monuments to our fleeting musings. But while I've participated in others' personal confessions (I'm a regular reader of a blog that chronicles a personal odyssey out of the morass of debt, a blog by a former graduate-school classmate who just got a two-book deal, a blog by a former colleague who writes about soup, the list goes on) but until now I've never contributed to the culture of TMI. I hope, at least, this blog helps me. And, at most, maybe it will help someone else in the same situation.