What if…?

April 18th, 2010

For the most part, I’ve managed to keep the “what-if?” thoughts at bay. As a rule, I don’t like to expend mental energy on unanswerable questions, preferring to focus on more productive lines of thought.  Since my surgery, it’s been hard to keep a hold on them, though. The double mastectomies were painful and emotionally challenging. They would be in any case. But the lymph node dissection, warranted by the four lymph nodes that lit up in the PET-scan during my diagnosis & shown positive for cancer by a biopsy, is going to hang over me for the rest of my life. There is a whole list of things that I can’t do anymore because 18 lymph nodes have been removed from my right armpit. I am now forbidden, for example, to garden barehanded, get blood pressure or blood drawn from that side, or move heavy furniture. I will have to take precautions that vary from annoying to uncomfortable. I have to be wary of sunburn or infection or cuts on that side and I will now always fly in airplanes with an elastic compression sleeve on my arm. All of these measures aim to ward off an episode of lymphedema, which, once triggered, can become a chronic and painful problem.

While we definitely celebrate the great pathology result I received after my surgery, it changes my prognosis but not my course of treatment. For some reason, a number of folks assume I must be finished with treatment now. They have said as much when they see me or email me. I think that misconception, combined with understandable compassion fatigue, explains why folks have all but stopped signing up to help us out on our help website.

It seems logical that I should be finished with treatment, but the course of treatment is determined by my original staging not my downstaging. If I had started as Stage 1, I would not have had the lymph node dissection and the long term side effects I outlined above. Even if I had been Stage 2, I would not be facing 6 1/2 weeks of daily radiation, to begin in the next couple of weeks. I would still have Herceptin infusions through November, because that has to do with the pathology of my disease, not the staging.  But the next big thing, the radiation, is completely a result of the timing of my diagnosis.

Which is why I am what if-fing. I keep thinking about how I had scheduled my annual doctor check up in early May 2009. I always have an exam around my birthday so that I can remember to do it. My doctor’s office called a week before to say that my doctor had to reschedule because of an unforeseen conflict. My family was set to move at the end of June, and given her limited clinical hours and my jam-packed, get-outta-town schedule, there was literally no time available to see her before we left. I decided to just wait until we got settled in our new city with a new doctor. I felt fine and had no chronic health problems that needed monitoring. What difference would a few months make?

So that’s my obsession. Could I have found my cancer earlier and avoided some of this discomfort and misery? I did monthly self-exams and I didn’t feel anything until September 2009, so I don’t know that my doctor would have noticed a lump back in May. I had asked her the previous year if I should get a mammogram. She had told me about the new protocols that did not recommend them for women under 40, so there wouldn’t have been any imaging done. But I can’t help but wonder if another set of eyes and hands at that time might have felt something suspicious.

When I did feel my lump, my husband sprung into action, finding the name of a good primary care doctor from friends. His practice was full, but a doctor-friend recommended us as patients and he found a spot for us. My husband called to make us appointments, which were not going to be available for a month. When my husband explained that I had a concerning lump, the receptionist fit me in a week later instead.

I know we acted as quickly as we could have once the lump was found. I saw my new doctor, who felt the lump that I felt but assured me that he would “bet the house” it wasn’t cancer, given my overall health and young age. I explained that after my step-brother died of metastatic prostate cancer at 36, I no longer took comfort in low probabilities. He tried to get me in for a mammogram that day but I had to wait two days before they could fit me in. This was followed by several weeks of diagnostic tests and second-opinion seeking before I began treatment.

According to the oncologists, it takes 6 to 8 weeks to lose ground in staging for an aggressive disease like mine. So I did not lose ground during the diagnostic phase. But I had four months between my missed doctor’s appointment in our old town and the one I urgently scheduled in the new. What if she had found it? What if I had begun treatment earlier? I would have been spared much of the discomfort that I will now live with, the next phase of treatment I face.

I had been looking forward to not working much this summer, spending time reconnecting with my kids and building our connections in this new place we have moved to. I realize now that a good chunk of summer will be taken up with treatment. After completing two major phases of treatment, I finally learned that the being “finished” does not correspond with the doctors’ time messing with your body. Recovery takes a lot of effort and much more time than the treatment event itself. It takes 6 months to a year to recover from chemo. I am still menopausal from it. The surgical pain is ongoing. As a result of both treatments, I wake anywhere from 3-6 times a night from either nightsweats or pain. It will take 6 months to a year to recover from the radiation, which will bring me skin discomfort and fatigue. Reconstruction surgery cannot happen until a year after radiation is over, summer 2011. And reconstruction is not one surgery but three, so I will spend next summer in the OR and recovering from each of those operations.

I don’t blame my friends from feeling weary of all of this. I know I am. I hate this experience of new treatments bringing new kinds of physical discomfort. I hate the cumulative effects of it all. I hate how much I have to endure and keep on enduring. I hate knowing that, in the end, Me 2.0 is going to be a compromised version of Me 1.0.

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