03 – New Beginnings

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, where cancer hospitals avoid the word in their official name.  I have talked with patients about cancer’s effects, 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.

After dinner I asked her if she wanted to watch a movie (what else!).  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 my family doctor 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, my story.  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’ marking 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,  chronic lymphocytic leukemia, that sometimes only involves a watch-and-wait situation that can go on for years before treatment becomes necessary.  And way at the bottom of the list is the rare, exotic, tropical, viral explanation for my massive spleen.  I might have voted for either of these last two.

One unexpected finding of his physical exam of me was a series of enlarged but painless lymph nodes in my groin, inquinal 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.

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