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A few weeks later, after the surgery, I shuffle from oncologist to oncologist, shopping for a place to have radiation and chemotherapy. One side of my neck looks like Dizzy Gillespie when he's blowing his horn. Frankenstein-like stitching wanders under my chin, across my neck, and under my left ear. I am reminded of TV maps of the Ho Chi Minh Trail. There is often blood in my mouth, and I can't move my head or my jaw very well. Getting opinions is a huge amount of work -- for the patient. Copies of my slides, surgeon's notes, biopsy report, etc., are needed by every hospital we visit. For some reason, none of these guys can talk to the others or exchange these materials among themselves. Requests for copies must be made in writing by fax, and we don't have a fax machine. I suppose it's all about privacy, and a good thing, but as a software-and-database guy, the inefficiency galls me.
One leading doctor is a bit condescending. "I never would have operated on a tumor that size," he says. There is some debate as to whether the cancer has spread through the walls of my lymph nodes. If it did not, I may not need the chemo, which would greatly ease the treatment. It's also a big question in the recurrence derby. This doctor, a diva in a white coat, tells us that he won't have an opinion worked up from my slides unless I commit to him and his hospital. "Too much work for my team," he concludes.
When I think of all I go through in my professional life to earn someone's business, I am so livid that I consider writing a letter to his hospital board.
But being treated this way finally makes me realize we are shopping for care. These people work for me. I also consider drafting an RFP (request for proposal) and sending it to the hospitals we are considering: "Here are my questions; here are my slides. Your opinion and recommendations are due by 6 p.m., along with your cost estimate." But I don't. I do vow that I will not select anybody who doesn't understand that I am the customer.
A combination of postoperative chemo and radiation is the most aggressive plan, with the most pain, but gives me the best odds. Given that I am young and otherwise healthy, most of the people I consult agree that I should go for it.
Then come the warnings. "The chemo is really tough," the radiation guys say. "Cisplatin is a very toxic drug to your system, with ringing in the ears, bleeding, nausea and vomiting, infection risk …"
"That radiation," cluck the chemotherapy oncologists. "Everyone talks about the chemo, but in the end it's the radiation that hurts -- the sores, the loss of saliva, sometimes even the inability to swallow …"
After a few appointments, Hilary sums it up better than any clinician: "First we'll hit you on the head with a hammer, then we'll light you on fire."
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