My wife was cleaning out the closet in the study yesterday, occasionally running across old photos. She handed one to me, saying that she almost didn’t recognize the rather thin, bald person sitting there on the couch in our old house. I studied it briefly with a mixture of wonder and relief. It was, of course, a post-transplant pcture of me – no hair, no beard, and 20-30 pounds lighter.
My life has progressed immeasurably since those tenuous days back in 2004. I spent most of the past two days taking care of my two small granddaughters, Sophie, three and a half, and Isabel, no quite one, while my daughter-in-law, Dorothy finishes out nursing school. They were mere unfulfilled dreams back then.
So for anyone struggling in their chemo or radiation or rehabilitation, I offer this vision of my daring girls as an example of what blessings might lie ahead in each of our disparate futures.
The great folks at Laughing Squid hosting services in San Francisco seem to have fixed the issues with the “tabs” at the top of the blog. So please feel free to leave comments. Below I continue with my journal.
Journal – December 2001
I’ve read about the “psycho-social” aspects of having cancer. I have followed the descriptions and studies for years. I’ve lectured about it, about the shock, the disbelief, and the immobilizing fear that the word “cancer” can bring. It was not too long ago that people we afraid to say the word, and if they said it at all, said it in a whisper. I have been in countries where they still avoid the word and certainly avoid saying it in front of the patient. I have talked with patients about it, talked with families, sat with them in the dark, looked out at the rain together. But none of that adequately prepared me for the numbing reality of these two weeks.
It is Thursday morning, less than a week since I first noticed the mass. I have it all planned out. I will pick Tish up at the airport. We will have a quiet drive back to the house, talking about her time in Florida. The fact that I may have cancer is not something to reveal while driving 70 mph down the interstate. I will tell her when we get home, after she has said hello to grandma, after she has settled in. I really thought I was doing pretty well, trying to brightly hold up my end of the conversation. But several times she says What’s wrong? Is something wrong? This happens again at home as we are unpacking her bags. Now it’s time. Okay, let’s go sit down in the study.
So we sit calmly and I tell her first about my spleen, then the CT scan, and finally the suspicion of cancer. I had rehearsed this beforehand – the order of presentation, the phasing – in order to soften the revelation and to approach the “C” word gradually. My voice broke several times, unlike in rehearsal (no, actually I think my voice broke in rehearsal also). She took it quite calmly. She did this consciously she told me later in order to give me the opportunity to be the vulnerable one. Her time for crying would come later.
At bedtime I tried to sleep but had to resort again to the Ambien, the sleeping medication that I use when I travel across too many time zones. The next day, at mid-morning Tish left work and picked me up at 11:00. We drove to meet my new oncologist. Until I turned 50 and started going to Tom annually for a physical, I might go to a doctor once every three years. This is my fourth medical appointment this week.
The receptionist led me in to get weighed. The scale was in the room where the nurses administered chemotherapy. Patients occupied all six of the chairs. Now I have given chemotherapy myself hundreds of times. I suddenly realized that I might be occupying one of the chairs very soon. I suddenly realized that I have neatly divided the world into people that sit in chairs like that, people defined by illness, and then the rest of the world of healthy people, people with faithfully functioning, intact bodies. This arbitrary division is not necessarily a bad thing. But it is one of the ways in which I have categorized the world. And now, through no choice of my own, I am in the other half. This realization lasted for only a few seconds, but I knew that I had changed irrevocably.
My new oncologist, Ray Markham, walked into the room. I realize that he knows quite a few of the physicians that I have worked with. They had all done internships in oncology/hematology at the University of Rochester. We chatted for a bit and then he asked me what my perceptions of the situation were. Many doctors would instead start a standard litany of logically ordered questions. But this physician wants to begin with my explanation of my experience. When he goes to the board to sketch an outline sorting out the symptoms, the proposed diagnostic procedures, and the differential diagnosis, carefully explaining each step, I know that I have the right oncologist. I fill up my patients’ boards with the same type of explanations (I always carry three different colored dry-erase markers in my pocket). It is sort of a trademark of mine.
While I am enthused about my choice of oncologist, it is hard to be enthused about the differential diagnosis. First is some type of lymphoma, and probably not Hodgkin’s disease that is in many ways better than the other types. Next there is a serious disease with a funny name – hairy cell leukemia. Finally there is CLL, probably chronic prolymphocytic leukemia. And way at the bottom of the list is the rare, exotic tropical, viral explanation for my massive spleen. I might have voted for these.
One unexpected finding was a series of enlarged but painless lymph nodes in my groin, inguinal nodes. These are the most logical place to start hunting for an explanation, for those aberrant cells. We need to do a biopsy as soon as possible. I have my list of surgeons in my pocket. But it’s Friday afternoon. I suggest adding a PT/PTT, blood coagulation studies, to the list of labs I will need drawn. I know that the surgeon will not go near me with a scalpel without these results. I trudge to the lab – there is no question about it now – I am a patient.