Wednesday, September 5, 2012

!@#$% Happens

The Dream Summer
We were supposed to leave for five weeks in Italy on July 29 -- four of those weeks would be spent at an artists' colony housed in a castle in Umbria where I was hoping to finish my new book. A castle! Sound too good to be true? Uh huh…

The Reality
A visit to the radiologist on June 12 for a routine ultrasound (dense breast tissue) led to a core biopsy. Not that I didn't try to jump off the table and tell Dr. S I'd have the biopsy at another time because I had a really busy summer coming up. Oh, yeah--I actually did that, saying I'd discuss it with my GYN and get back to her. She convinced me, in her very quiet way, that my GYN would tell me to have the biopsy. Now.

The biopsy report came back a few days later while I was with my GYN in her office (a long standing appointment). It was good that I wasn't alone and that she, who has been my doctor for seventeen years, could explain it to me. Very early. Very small. Well differentiated. All good news.
But it was ductal carcinoma.

Wait – me? There’s no breast cancer in my family (recent extensive genetic testing shows no genetic connection). I haven’t eaten red meat in more than 30 years. I’ve never smoked, I exercise every day, forget alcohol - it’s bad for my reflux - I’ve been the same weight my whole adult life. How is this possible? Well, guess what – it’s possible.

The biopsy report was a shock. Isn't it always? What do you do? Where do you go? I'm an emotional person. I'd read Betty Rollin's book, First You Cry, long ago - but for whatever reason I didn't cry. I choked up that first day, but the tears didn’t flow. This is neither good nor bad. It just surprised me. Instead, I sprang into action. Okay, I thought -- let's gather all the info, talk with both my primary care docs in NY. Talk with friends who've been through this. Ask for recommendations. Get a list of breast surgeons. Get this done. Taking charge (or thinking I was taking charge) made me feel better.
What follows are some of the hardest decisions I’ve ever had to make. 

The breast surgeon and the oncologist/breast cancer researcher who helped put my team together were great, and both were okay with either lumpectomy followed by radiation, or mastectomy with or without reconstruction. The decision was mine to make.

My cardiologist (primary care) and my GYN were not in favor of radiation for me. They know my body. They’ve cared for it for many years. I trust them. And while they have patients in common, they don’t really know each other. They are affiliated with different hospitals. Hearing the same thing from each of them was powerful. I won’t go into their reasons here. They’re specific to me. They have nothing to do with what might be the right treatment for someone else. (Most of my friends with BC have had lumpectomy and radiation.) They helped me make the decision to have mastectomy and reconstruction. Once the date was set I felt a sense of relief as I always do when I have a plan in place. Then, more decisions.

Breast Size Redux
I have small breasts (a la Margaret Simon). A-cups? The breast surgeon asked at our first meeting. She nailed it. I told her the exercises didn't work for me. Not sure she got my attempt at a joke. Like Margaret I used to think bigger was better. But my dense, small breasts aged well. They stayed perky while other body parts sagged. I'd become quite fond of them. Still, the idea of mastectomy wasn't a difficult emotional decision for me (again, these are very personal reactions and decisions). Maybe because my breasts have never defined my sexuality. Who knows?

At the shop where I was sent (pre-surgery) to get a couple of mastectomy camisoles for post surgery comfort, a yenta with a sense of humor said, Honey... take them both off and get yourself a matched pair. She wasn't the only one who recommended that. And I admit, sometimes I think I should have. Not for the "matched pair" but for the worry that it will happen again in the other breast. I have friends who've gone that route. If I were younger I think I’d have made a different decision. But I was focused on having as little anesthesia as possible, and the quickest recuperation.

The plastic surgeon thought she could do the reconstruction at the same time as the mastectomy, saving me a second surgery months later. When it comes to reconstruction there are more decisions to make --implants or autologous? If implants, saline or silicone? By then I was so tired of having to make decisions I went with whatever would make the surgery easiest on me, give a decent result, and left the rest to the plastic surgeon, who had been highly recommended and was part of my team from the beginning. (silicone implant)

Six Weeks from Diagnosis to Surgery
During those six weeks, with the docs’ blessing, we were able to go to Nantucket where we’d rented a house for two weeks. Tiger Eyes was screening at the film festival and all our kids had plans to visit. It was a great two weeks. I got in plenty of beach time, we played Pounce every night, and most importantly, we all enjoyed our time together. During one thunderstorm (I’m phobic about lightning and thunder – have been as long as I can remember) we were in the car and the kids were concerned about me. I said, Hey, I have breast cancer. What’s a little lightning and thunder? (I’d like to tell you I’m no longer phobic but I’d be lying.)

When we got to Nantucket I went cold turkey off my estrogen patch (on the docs’ advice) without knowing if my tumor was ER positive (it was). I’d been using it for seventeen years and I really miss it. I’m having my first hot flashes at age 74. (Most of my friends with BC had never used any kind of HRT.)

We also got to spend four fabulous days in San Francisco, as planned, where Tiger Eyes was screening at the SFJFF.

Note to disappointed fans in San Francisco: I’m sorry I couldn't stay after the screening to sign your books. Now you know why. I wasn't supposed to be in crowds. Could not take the chance of catching a bug before surgery. On the plane I wore a surgical mask (and scrubbed our seats, tray tables, etc, like a lunatic while George pretended to be asleep) but I couldn't do that with you without explaining, and the time wasn't right for explaining. I’ll come back to your beautiful city and sign books for you another time.

July 30
I'm not afraid of surgery. Maybe I should be. Anesthesia can be dangerous but I'd had a hysterectomy seventeen years ago (cervical cancer caused by HPV). We didn't know it was cervical cancer before the surgery but we knew something was going on. Caught it just in time, extensive but still in situ. No other treatment necessary. Another story for another time. If I had a young daughter or son I'd talk to their docs about having the vaccine to protect them from getting or giving HPV. If only there was a vaccine to protect us from breast cancer we'd be lined up -- wouldn't we?
Anyway, this surgery went well, one night in the hospital, very little pain.

Going Public
My friends who've had breast cancer have been so helpful and supportive I can never thank them enough. They got me through this. They were my inspiration. If we can do it, you can do it! They were right. And I got off easy. The cancer hadn't spread anywhere. I don’t need chemo which is a whole other ballgame. (I'm considering taking a daily med but haven't yet made up my mind.) Also, I’m older, which is very different from being diagnosed when you’re young.

Now it’s one month post surgery -- I'm still in NY and feeling stronger every day, walking a couple of miles in the park each morning and going out to early dinners with George. Have seen movies and a couple of plays, as you know if you follow me on Twitter. I’m able to read again without falling asleep. Which doesn't mean I don't need a nap every day. I'm not working on my book yet (have just been given permission to type an hour at a time with arm exercises in between) but I'm thinking about getting back to it after Labor Day, kind of like starting school.

I have to thank Dr. S, the radiologist who's been doing my mammograms for 20 years. If she hadn't decided I should have a sonogram because of dense breast tissue we still wouldn't know. This didn't show up in a mammo or in physical exams, and I'm checked by doctors four times a year. Even the breast surgeon couldn’t feel this one. If you have dense breast tissue ask your radiologist about having a sonogram.

I’m lucky to have a loving, supportive partner in life (husband George) who has been fantastic, accompanying me to every doctor’s appointment, keeping me amused, making sure I’m well fed, and reassuring me every step of the way. I'm grateful to him and the rest of my loving family.

As I've told my friends who've also been treated for breast cancer, I've joined The Club - not one I wanted to join or even thought I would ever be joining - but here I am. I’m part of this Sisterhood of the Traveling Breast Cells (apologies to Ann Brashares). Medical diagnoses can leave you feeling alone and scared. When it comes to breast cancer you’re not alone, and scary though it is, there’s a network of amazing women to help you through it.

Stay well.