So how am I?

So how am I? How am I, really? Now that I am exactly 2 years out from the start of my treatment, a time that felt like armageddon, its a good time to reflect on where things stand. I’ve just completed a portion of a periodic survey about breast reconstruction, for research in which I agreed to participate via Sloan, and writing about the survey seems like good context for an update.

The Sloan survey asks about the character and intensity of my pain, offering words like shooting, throbbing, sharp, and about 10 other adjectives that I’m glad not to be experiencing. From 0-10, I am happy to give them each a 0. But there is no single word in their survey that describes my physical state: the sensation that a rock is tethered to my chest, making breathing deep while sitting erect feel like a tedious athletic event. It’s hard to refrain from pulling and pushing at my breast when in mixed company, a habit I’ve developed, with the encouragement of my therapist, in an effort to free myself from scar tissue’s grips. But by the survey, which offers no option for comments, I’m doing just fine.

The survey also asks many questions about how satisfied I am with my reconstruction, both look and feel, from every perspective possible, and how it has affected my self-confidence, mental health, and ability to fully participate in daily activities, whether clothed or unclothed. Here my answers reflect satisfaction, but again I’m frustrated by what is not asked. There are no questions about how much longer it takes to dress in the morning, evaluating each choice as to whether it accentuates the unevenness of my breasts, which oddly seems different each day. I also don’t want to give answers that would be negative reflections on the work of my doctors. I know that my outcome is not just my reconstruction, but my reconstruction nuked with radiation that continues to affect all my tissue around my implant. If it’s not perfect it’s not the fault of my plastic surgeon. There is no place on the survey to say that, still, 2 years out, most days are good but some others are bad. It is also hard to compartmentalize my reconstruction and consider it alone without linking it to my total cancer experience including medication side effects, odd things like blood blisters on my tongue, and recent inexplicable exhaustion.

And my answers are skewed by consideration of some alternatives. For example, there is a question that asks whether I would make the same choice for reconstruction again. Of course I answer yes. But it is a question that throws me because it affirms my fear that it could happen again, and prompts contemplation of what things would be like if I had not had reconstruction, thereby hurling me down the path of second-guessing. And, there wasn’t really a choice, was there? My choice was between bad and worse. Again, it’s hard to compartmentalize on the reconstruction part and say yes I’d do it again without feeling like I am somehow saying: Cancer, again? Sure, bring it on.

Finally, when I’m answering the survey I tend to paint a rosy picture. I can’t explain it other than to say for every issue it asks about, whether pain, self-image or depression, I can’t help but be thankful to be alive. Yes I would do it again. Yes I can deal with the tightness. Yes I can find something to wear that will camouflage my unevenness. Yes I can deal with depression, with obsessing that every odd physical sensation heralds cancer’s return.

Here’s what I would say if there were a comments section in the survey: This survey may help Sloan get a 30,000-foot view of reconstruction outcomes on thousands of patients but it should not be assumed to accurately reflect the experience of any single patient. There are things that I experience that you don’t ask about. There are questions that I could answer with both a 1 or a 10 depending on what day it is. I lie on some answers because the questions seem to try to provoke disloyalty to my doctors. You remember them: the people who saved my life! I feel very strongly about this in particular, maybe to an irrational degree, but it demonstrates how inadequate the survey is: you survey-bastards will not get me to betray them and have me admit to being dissatisfied with their work. They did their best when I was at my lowest. The survey forces simple answers to questions on which a whole blog post can barely scratch the emotional surface.

When I agreed to participate in the research, back before the start of my treatment, it seemed like answering periodic surveys was the least I could do, and I remain glad to do it if there is any potential benefit. Indeed, I’ve learned over the past few years how much I’ve benefited by the agreement of those treated before me to participate in clinical trials. As a scientist I understand that this survey is well designed and the only possible way to collect unbiased, objective data from thousands of patients. But as a human being, cancer patient and breast reconstruction beneficiary, my answers on the survey don’t begin to reflect my total reconstruction experience.

So how am I? Really? I’m fine. Really good, actually. At 2 years out I’m way better than I was a year ago and I truly expect to be better yet a year from now. On February 13, 2014, during my mastectomy, a record-breaking blizzard raged outside. On February 13, 2016, as I do yoga I watch the wind scatter a few flurries across the patio. That pretty much sums it up.


Roosevelt, NJ February 13, 2016

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