I have written about the election on my other blog. I have cried my way across the Pacific and then across the southwest of the US. I cannot type the name of the person who seems to have been elected. So instead I will turn away from the unfolding global tragedy and toward something that perhaps offers some kind of insight, some kind of hope.
I had a dream on Saturday night that Stan removed the whole breast and then told me there was no cancer in it anywhere. My healthy breast was gone. I woke up puzzled. Would that be good news (yay! No more cancer!) or bad news (why did I take off a healthy breast?)? And then, later that day, I had a real call from Stan that was even more confusing.
You see, right now my left breast is a saline implant held in by the chest muscles that have been stretched over it, surrounded by a tiny layer of fat and then covered with skin. It is in that little layer of fat—the thickness of a New Zealand pancake (=thin)—that these little cancers have shown up. Draw a clock on my left breast. Stan has taken all of the tissue out—leaving skin against muscle—from 11-7. The original cancer was at 2. The second little cancer was at 3. The third, tiny cancer was at 1. There is a question about whether there is something lurking between 7 and 11.
I thought the full mastectomy was also to see if something was lurking underneath the implant. But Stan says no, there’s nothing under there. So why not just clean out the tissue from 7-11? Why take the whole breast off? Because that’s what they do. “Surgeons like it to be simple,” he explained to me. “The simple default option is to just take it all down.” Will that give me a better prognosis than simply removing the pancake of fatty tissue? Stan hadn’t ever thought about that.
This brought to my mind a piece of research Dan Ariely discusses in his book Predictably Irrational. Researchers gave a (fake) case to doctors about a man who had major pain in his hip. All medications had been tried without success and the man had been scheduled for a hip replacement. In the final review of the case before surgery, the doctor discovers that no one has ever tried ibuprofen for this guy. The question the doctors were asked: Do you pull him back from hip replacement and give him ibuprofen? The vast majority of doctors said yes. (This seems like a good and reasonable outcome—hip surgery is dangerous and invasive.)
Another set of doctors were given the same case, only this time, there were two medicines they hadn’t tried: Ibuprofen and Panadol (or whatever). The question now was: Would you pull him back from hip replacement and if so, which medicine would you try first? In this case, with the added complexity of a second decision (which medicine?), the majority of doctors just sent him on to have hip replacement. So when he had twice as many options of not needing his hip replaced, the majority of doctors sent him to get it replaced. Yikes. Ariely offers this as an example of the power of the default to shape our decisions.
I started to wonder if my case was sort of like that. There are two choices: do nothing, or do everything. There don’t seem to be a whole lot of greys in the default spaces. So when I asked about the pancake question, Stan took it to a panel of oncologists. And I took the same question to a friend who is a breast cancer specialist at the Cleveland Clinic.
None of them could find a clinical reason that taking the breast away was better than taking that pancake of tissue away. Losing the breast was the default option, but mostly because they just hadn’t thought of this other option. If X happens, then Y is the response. As they questioned their assumptions, they realized that a smaller and less invasive surgery—one that keeps the shape I currently have now—would be the best option for me. Taking off my breast does not give me a bigger chance to hold my grandchildren. It was just the default. Stan and his colleagues were grateful for the push back from me, grateful to really ponder the question rather than simply follow the regular pathway.
As I sit with the tragedy of the election, I am making sense of this news from my doctors. They now recommend against their default option because none of them can figure out why it’s better. So, in 12 days I’ll have the 7-11 pancake removed. My fourth surgery for this “annoyance cancer.” And perhaps some good will come of this time of personal anguish and confusion (I am not yet willing to guess that for our collective anguish and confusion). Perhaps this will help those doctors and you readers shut off the power of the default by asking real questions about the options, by asking why one thing would be better than another, by searching through the murk of medical uncertainty for new possibilities instead of following old pathways.
It’s funny. I spent last week mourning the breast and coming to terms with a new shape—even going so far as to talk to clothing designers and begin to sketch the asymmetrical clothing that would highlight the beauty of a one-breasted form. (If any of you reading are one breasted, I am still eager to support the creation of a whole new set of styles. I think you’re beautiful—write to me!)
Today I am so stunned and sickened by the international tragedy of the US election that I can hardly feel celebratory over my news, can hardly feel the weight of the sadness lifting or the lightness of the dawning delight over keeping my shape intact. And yet I know that our various forms of grief—large and small, collective and personal—are a part of what it means for us to be human. I am feeling very human right now, and very grateful to be connected to you all.
2 thoughts on “Pinprick of light”
Jennifer, I am so glad there is a smaller surgery before you now! And I so hope that some good can come from both your personal and all of our collective anguish and confusion. Thank you for holding out that hope on this dark day.
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The ibuprofen situation reminded me of something. One of Abbot’s medical school edicts was “If you hear hoof beats, don’t think “zebras””….meaning…pull back and first consider the obvious. He also says, “Surgeons like to do surgery. It’s what they do.” So in some way, maybe surgeons prepare for zebras, even if the likelihood of zebras is rather low. I think your message here is so very strong…it’s your body, so ask a hundred “What ifs”…or “what about….” Two years ago, a gynecologist wanted to give me a hysterectomy for heavy periods. “You’re done having children, so you don’t need your uterus anymore.” Well, I came home, discussed it with Abbot, did research, and found that in the US, that was a solution. But in other countries, there were far less invasive methods to fix that and that keeping the uterus actually promoted hormonal activity that was viewed favorably as women aged and that ceasing my menstruation would prematurely put me into menopause and change many things I was not willing to change. So I carried in my research, met with the surgeon and doctor and said, “I want to rethink this. The women in my family don’t go through menopause until their sixties. They also live to be close to 100 years old and the research seems to correlate those two. I’m unwilling to give up that magical power to make this a typical surgery.” And so we reworked it. I think many people are afraid to challenge the medical team. But if you go in with the questions and research in hand, most medical folks are quite willing to listen and be pushed to see another way through. Medical methods are a “system” to most doctors….”If A, then B.” You just have to stop the car a minute and say, “We have A, but have you ever considered Q? I like Q. And here’s the research promoting Q.” So I”m glad you pushed Q forward. Because from now on, your surgical staff will consider Q, even if the next person is expecting B.
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