Friday, May 31, 2013

Size Matters

Melanoma Man was back at the cancer center 4 Wednesdays ago. I decided to treat myself and take the whole day off from work, instead of racing downtown and then back home in time for early release to pick up kids. What is this "early release" thing anyway. Middle school gets out at 12:50 p.m. every Wednesday. Up north when I was a kid we called that a half day and that's what we did in kindergarten, half days. I digress. After getting the kids off to school I walked on the beach for an hour and a half. Home to do laundry and other assorted household chores.

This month's cancer center visit included labs, EKG, a visit with the Oncology Nurse Practitioner, a visit with the Research Nurse Coordinator(Letitia). I emailed Letitia a week ahead of time to ask that the new skin lesions be evaluated. Oncology Nurse Practitioner eye balled them and said "probably cysts." That wasn't what I had in mind. Perhaps I should have been more specific, as in "Please have the Dermatology Nurse Practitioner or the Dermatologist look at them. Customer service people! Is there no customer service in healthcare. I know the answer to that question. No, there is not. Wouldn't it be common courtesy when your patient has driven for 4 hours to an appointment and has been bleeding money into this "out of network" cancer center, this buying of time. There is no "in network" melanoma specialist, so they've got me there. The choice is pure illusion.

My mind drifts back to the year 2000, when my mother was hospitalized for a severe headache and double vision. I flew down to Florida from DC. Standing at her bedside, talking to her internist, wondering out loud about ordering a  Neurology consult and the head CTscan. Shouldn't that have been obvious. Then the results came in, an aneurysm deep inside her brain, in the cavernous sinus. The neurologist and internist telling me that no one would operate on this. I called Bryan, my skull base surgeon friend, surely he would know. He did know and he pointed me to the Sheik, that's what I called him, really Laligam Sekhar, one of 25 surgeons in the world who might take on the job of putting my mother back together.  I remember Melanoma Man, fiercely afraid of hospitals and all things medical, pulling me out of my mother's room in the ICU to show me the "really sick people" that inhabited the rest of ICU as I cried and worried about her swollen shaved head and her wildly erratic blood pressure and her brain of course. It was midnight. I had been at the hospital since 5 a.m.  "She is going to make it, and you are coming home and going to bed." I was pregnant with imac at the time and was making my last ditch effort to turn her into a decent grandmother before he was born.Melanoma Man was right, she did make it,  but the grandmother cause at this point was hopeless.

In April Melanoma Man came home from CT scans at Moffitt declaring, "Two of my six marker tumors are no longer visible on the CT." I was encouraged, yet something in his voice told me that wasn't the whole story. This week he laid April's CT report on the kitchen counter, where I usually check for mail. The rest of the story was in it. Two of the remaining marker tumors grew in size by 20%. To me a much more significant piece of information than the two disappearing tumors. The twenty percent increase means these two previously shrinking melanomas have developed drug resistance.

I've filled these past few weeks with walks and books and even movies, getting lost in other people's stories. Fourth grade and Seventh grade come to an end next week and summer begins.

Some days it's hard to show up for real life, like the Saturday afternoon that imac and Butter were invited to see Iron Man 3 with friends. Melanoma Man knew other moms would be there to mind the children. He asked me to come home and hang out with him. I so wanted to spend the afternoon watching Robert Downey Jr. to escape into the busyness of children's schedule, to escape into the imaginary world of a movie. Just to go or be anywhere but in the last act of Melanoma Man and Laundry Thief. I did the right thing. I went home. I watched golf on tv with Melanoma Man and read my book and talked about the week's articles in the Economist. It was ordinary and yet so hard. Most of the time I end up doing the right thing. Most of the time.

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