ReachOutGiving

On June 12, 2013, I was diagnosed with a local recurrence of my breast cancer.  I have since had a lumpectomy, and begun chemotherapy (every three weeks for 1-2 years) and daily radiation treatments (for six and a half weeks). Brain scans have revealed that the cancer may have metastasized, but I must wait until November to do a follow-up scan.

I find myself feeling weighed down by everything that's going on.  I suppose it's to be expected, but it's making it so difficult to focus on my work.  And socializing has become exhausting.  I was excited to see a dear friend and celebrate the impending arrival of her newest family member at her baby shower this weekend, but I worried afterwards that I might have been dampening the mood of the event with my general malaise.  Maybe no one noticed.  It's strangely schizophrenic, to feel genuinely happy for someone and happy to see one's friends, and at the same time to feel incapable of making basic conversation, because of the constant refrain buzzing through my mind - "cancer, cancer, cancer."  I worry if I have a brain tumor, what that will mean for me.  I am exhausted by the amount of time and energy it has taken and will continue to take from me. 

Thomas Wolfe, recalling a lifelong struggle with illness, wrote in his last letter, "I've made a long voyage and been to a strange country, and I've seen the dark man very close."  I feel lost in that strange country sometimes, and it's so difficult to find my way back to mundane conversation or to film analysis or to flea eradication. 

Siddharta Mukherjee, in The Emperor of All Maladies, makes a comparison between the struggles of some of the cancer patients he treats and Primo Levi's writings about the Holocaust.  "Cancer is not a concentration camp, but it shares the quality of annihilation: it negates the possibility of life outside and beyond itself; it subsumes all living.  The daily life of a patient becomes so intensely preoccupied with his or her illness that the world fades away."  My situation is not nearly so extreme as some, and I would argue that even theirs should not be compared to a concentration camp (at all), but I do relate to the idea of annihilation.  Often, I can feel the world fading away, and I have to grasp desperately at something - bears, surfing, horseback riding (which I never get to do, but maybe some day...), good surprises, new accessories, earl grey pie and an iced horchata latte, trips to come, Halloween haunts, Christmas craft fairs, laughter - appealing enough to bring me back to myself for a time.

When I found the lump, I thought I should get it checked out, but I had every reason to assume that it would turn out to be just a minor blip on the radar screen of my life. When the registered nurse who did the exam said that I should get an ultrasound, I still thought that it would just be an anxiety-producing event that would soon fade from memory as I go on with my life. When the radiologist told me that I should get a core biopsy, I continued to believe it was a stressful situation that soon would pass. With each subsequent test, however, this feeling inside of me that it might be something more was growing stronger and stronger, until I received a call on March 30th from the registered nurse who had done the initial exam. She told me that I had cancer, then asked if I had been expecting to hear that. Um, noooo. Why in the world would I be expecting to hear that, I thought. I'm 31 years old! But the truth is, some part of me was expecting it. I've been through too much not to expect the worst, on some level. She went on to say that she didn't exactly know how to interpret the pathology report, so she'd googled some of the terms(!) and it appeared as though my cancer was invasive. She made an appointment with an oncological breast surgeon at the UCLA/Revlon Breast Center for that Friday morning. And that surgeon explained to me that I did have invasive cancer, but that the tumor is small (1cm) and is estrogen- and progesterone-receptor positive. That means it's fed by estrogen and progesterone, so I'll never be able to use hormonal birth control again. But "you're going to be fine!" she said, when I began to cry in her office. Right. She explained that I wouldn't need chemo and I could either do a lumpectomy with radiation or a mastectomy (single or double).

An MRI, several X-Rays, and some bloodwork later, I returned to her office to discuss my treatment options. She asked what I had decided and discussed with me the results of my genetic testing (which determines, with a limited amount of certainty, whether the cancer is hereditary and more likely to recur). I had tested negative for those genes, but my geneticist had explained to me that, with my family history and early diagnosis, it seems highly likely that I do have a hereditary form of cancer that they just don't know how to test for yet. Anyway, my surgeon casually mentioned that some new results had come in, indicating that my tumor is HER2/neu positive. She explained that this means it's particularly aggressive and more likely to recur, but that there is a drug that can target it effectively. "So it's actually a good thing," she said, as she casually added that I would be needing chemotherapy after all.

Since then I've done a lot of research, and I had a PET/CT scan, which seems to indicate that the cancer has not metastasized. It did, however, show an abnormality on my thyroid, so I'm currently waiting to get that diagnosed.

I decided to go for a bilateral (or double) mastectomy with reconstruction. My surgeon said, after I finally asked her what she would do if she were in my position, that she would get the bilateral mastectomy. My understanding is that I will have a 1% chance of recurrence (as opposed to an 8% chance with a lumpectomy and radiation). The difference may seem small, but to think about it another way, my chances of recurrence would be 8 times as high with the lumpectomy. She explained that I would be very closely monitored, and the threshold for testing would be low -- anything that feels remotely like a lump would be biopsied immediately, and I would need frequent mammograms. I decided that I just don't have it in me to deal with decades of anxiety every time I go in for a mammogram or find something lump-ish. I think it's worth the added piece of mind. And the likelihood of recurrence increases with each year, so it follows that the younger one is at the time of diagnosis, the more opportunity the cancer will have to recur.

My surgery is scheduled for May 17th, and rIght now I'm getting used to the idea that I'll be losing my breasts on Tuesday. I am confident in my decision and grateful for the support of my wonderful partner, friends, and family. I know I'm lucky to have caught it early, lucky that it's treatable, lucky that any number of other, worse things haven't happened to me. But I don't feel very lucky right now. I feel frightened and sad. This all still feels like a nightmare that I can't wake up from. I keep thinking that there must be some mistake, that it wasn't supposed to happen this way, that there's some parallel universe in which that registered nurse had called to tell me that the tumor was benign.

I've recently been in touch with another young breast cancer survivor, who assures me that there is life on the other side. She has been through a lot, but now she looks and feels great, and she seems to have gained a new appreciation for life. I'm looking forward to the day, in a year or two (my initial treatments and reconstruction will take that long), when I can say the same about myself.