Saturday, November 15, 2008

Going Nucular [sic]

When Dr. McAndrew told me I needed radiation, I was in shock. I'm having 18 rounds of chemo and a double mastectomy. I've already had a lumpectomy and 17 lymph nodes removed. Why on earth would I need radiation? She explains, but tells me to meet with some radiologists who can provide more statistics and information than she can. Dr. Funk gives me 2 referrals. Both have been practicing forever. One is a very conservative woman who apparently will tell me to radiate no matter what, and one is a little more cutting edge, and if anyone will tell me I don't need to radiate, it's him. After doing some brief research online, I tell Boris that unless radiation is going to drastically improve my chances of living, I'm not getting it. Period. I don't need another 7 or 8 weeks of hellish daily treatment and I don't want a significantly more complicated (and ugly) reconstructive surgery.

My first meeting is with the more conservative doctor. She's at Cedars. I check in at the front desk and wait for my escort to take me to the radiation wing. My escort greets me, picks up my file and leads me to an elevator. I ask to see my file out of curiosity. He looks concerned and tells me I'm not allowed to look in it. "Well that can't be right," I say. "It's about me." Now there's no way I'm not going to see the file so I tell him to get a supervisor, doctor, whoever, but I'm not moving until I see my file. "Uh, okay," he says. He goes to speak to someone at the front desk who comes out to speak to me. "Of course you can see your file," he says. "There are some privacy issues, but go ahead." Of course there's nothing in the file since I haven't met with the doctor yet. Whatever.

The waiting room of the radiation center is packed. Dressing rooms flank the back wall. I think it would be odd and uncomfortable to change in such a public place and then have to wait in my robe. I'm already unhappy. To make matters worse, the television is set to Fox News and Sarah Palin is on. She's talking about her wardrobe and how her newly acquired expensive clothing will go to a consignment store in Anchorage. I have the same reaction to her voice, wink and smile that I have to George W's. I cringe, my skin crawls, and I'm hoping someone might shoot me. But they don't. Instead, I wait and wait and wait and wait. Boris joins me. We wait and wait and wait and wait. Finally after 1 hour, a nurse approaches us and apologizes for the delay. She explains that the front desk just notified her that I was here 10 minutes ago. I'm glad the ship is running smoothly.

We're led into a small room with an examination table and a few chairs. The nurse asks me the obligatory questions about my health and then asks if I'd like some information about radiation. "Yes, please." She returns with a pamphlet and some cream that she says I'll want to use daily. "Um, why do I need to use this?" I ask. She explains that the cream may help my skin from burning during treatment. "But I'm months away from treatment," I say. "Oh," she responds. "I'm having a consult with the doctor, not treatment." I'm scared. Shouldn't she know that? She leaves to get the doctor.

A tall, attractive woman in her 50's enters the room and introduces herself. She tells me that she was at the tumor board meetings a few months ago when my case was reviewed (multiple times) so she knows a great deal about me. We talk about my treatment so far, and then I ask her to please make the case for radiation. She talks for well over an hour and gives one of the more scattered explanations we've heard. I think that Boris and I are about as educated as lay people can be about this stuff and I can tell that Boris is as confused as I am. We do get the basics though: She is recommending approximately 28 rounds of daily radiation of the entire left breast area, including an important lymph node on my upper chest (the lymph node is difficult to follow and if the cancer recurs there I'm kindof fucked) and part of my left lung which will die. Without radiation, I have a 20% chance of a local recurrence; with radiation my survival rate increases by 5%, my chances of developing sarcoma are small (but she can't give me a number), my chances of lymphedema are great, if I have reconstruction that involves an implant, I have a 5-70% chance (glad that's so specific) of the tissue around the implant hardening and contracting into a painful, uneven mess and if I ever smoked a "significant" number of cigarettes, my chances of developing lung cancer in 10+ years are unknown. Like any good lawyer, I ask what "significant" means. She doesn't know. The studies are inconclusive. Great. I did smoke for a few years in high school and college and lord knows exactly how many cigarettes. I inhaled. Plus, she explains that some women do experience burns in the radiated area that might never go away and the tissue will be forever damaged and weakened. Fucking fabulous.

I tell Boris there is no fucking way I'm going through that for 5%. 5%!? He's silent. Then he suggests that rather than discussing this now, let's speak to the second radiologist before making any decisions. Fine.

Two weeks later we meet with radiologist number 2 at Vantage Center for Radiation Therapy. The difference between Vantage and Cedars is pretty remarkable. It's small, not swamped, Fox News is not on and I wait for all of 2 minutes before being brought into a small office where I'm to meet with a nurse (for the obligatory questions) and then the doctor. I like Dr. Botnick right away. He's sarcastic and funny and doesn't make me feel like I'm going to die. The first thing he says is that he works for me, not any of my doctors and he's here to make me happy. I tell him the only way he can do that is to tell me that I don't need radiation. "I can't do that," he says. "You absolutely need radiation and you won't find a good radiologist on earth to tell you otherwise. I'm not going to push you into anything you don't want to do. But you need radiation." He says that he doesn't know who scared the shit out of me about it, but my fears are unfounded. I ask him about sarcomas and lung cancer and looking like a circus freak after surgery to only increase my survival statistic by 5%. "First of all," he says, "you could never look like a circus freak. You're attractive and lovely and radiation won't change that." Love. "Second," he continues, "5% is 5%. It all adds up, right?" I look at Boris and know that he agrees. Shit.

When I tell him how shitty my numbers are, Dr. Botnick waives his wrist like a true New York Jew (albeit from Boston) and tells me to stop listening to everyone's numbers. He says with confidence that I'm going to be fine. "You only have 4 nodes involved (only!?) and had a small tumor," he says. "I have treated plenty of women who live long lives who had 20 and 30 nodes involved. And women with cancer in both breasts. And women with giant tumors. You are going to be fine. Really." He says the risks are so small that he's actually never seen most of them in all of his years in practice. I inform him that I have met a woman who developed a secondary cancer after receiving radiation for breast cancer. He doesn't care. But the most shocking thing that Dr. Botnick tells me is that I don't need a bi-lateral mastectomy. Or even a mastectomy of the left breast. What!??? He believes that prophylactic mastectomies are becoming popular but there's no research to prove they reduce my risk of recurrence. But I'm a BRCA 1 carrier, I remind him. I have like, a bazillion percent chance of a new cancer in my right breast. He says I'm going to be closely monitored. Closely monitored enough that if a recurrence or new cancer were to appear, I'd know early on. I remind him that everyone thought I had caught this one early on and we all know how that turned out. But he tells me that if I don't want to lose my body parts, I don't have to. And at the very least I don't have to lose them while I'm dealing with a newborn. After I tell him that I hate, hate, hate fake breasts, he tells me that I'm not going to be happy with implants because they look fake and they don't do well with radiation. "Meet with plastic surgeons and find out what your options are. I'm here to answer any questions and remember that you don't have to make any decisions right now."

As we leave, I ask Boris if he thinks I should get the radiation. He does. "Snuggler," he says, "I know it's inconvenient and complicated, but I don't care what you look like and I don't think you should make this decision based on plastic surgery. I want you to live for a long time and I want you to do everything humanly possible to do that." I cry. He's right. 5% is 5%. Nothing to dismiss lightly.

I go home and email Dr. Funk for plastic surgeon referrals. I'll start making appointments in the morning.

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