In July, 2003, an oncologist at Sloan Kettering informed me that I would need a stem cell transplant because a routine follow-up scan had showed an olive-sized spot of cancer in my chest.
A year before, in the summer of 2002, I had been treated very aggressively by this same doctor for Hodgkin's lymphoma, a curable cancer. I endured months of a viciously-difficult chemotherapy treatment known as "the Stanford Five," a combination of five chemo drugs delivered weekly by IV infusion for 13 weeks.
To say it was grueling is a very mild understatement. But I successfully completed the treatment in October, 2002, and was radiated at Sloan for six weeks after. The following summer, the doctor announced that he saw a suspicious spot, and without even doing a biopsy, he told me that I would have to have to have a radical, life-threatening procedure called a stem-cell transplant to treat the "recurrence." The procedure would have cost a quarter-million dollars (I had insurance but still, people wonder why our health care costs are out of this world?)
I felt as healthy as a racehorse in the summer of 2003 and I demanded a second opinion. He said that I didn't need one, as he was the "nation's expert in that area." He was arrogant and dismissive, but my husband (a health care advocate) and I (a reporter and writer) refused to leave his office without a referral. Finally, he gave me the name of an oncologist at Dana Farber in Boston who is regarded as the "grandfather" of Hodgkin's treatment.
I spent the next few weeks in July, 2003, until I could get in to see the Dana Farber doctor, sweating it out and quite honestly, praying around the clock that I wouldn't need to go into the hospital for what would be months, to endure the hellish stem cell.
When I finally saw the specialist in Boston - my sister, my husband and my daughter all went with me -- he shocked me to my socks. After looking at my films and examining me, he told me that he suspected that I had not been properly radiated at Sloan. Instead of this olive-sized spot being a recurrence, he suspected that it was a "marginal miss," meaning it was a left-over from the previous summer's cancer, a spot that had been "missed" in radiation.
The doctor at Dana Farber was direct and adamant: "I had warned him [the doctor at Sloan] that if he was going to use the Stanford Five treatment, then he had to do a very thorough radiation." The doctor at Dana Farber told me that he believed the first doctor had screwed up (my word, not his.)
I was aghast and disgusted. But I was even more horrified when I realized that the doctor at Sloan might not only have been inept; he might very well have been unethical. He had a research project underway at Sloan, which called for treating patients who had "failed" at the Stanford Five regimen with the aggressive stem cell transplant.
I can't express how horrified I was when I thought back to my last visit to the Sloan doctor's office: his nurse assistant had actually handed me a permission protocol for the research project BEFORE they had even scheduled me for the biopsy to confirm that the spot on my CT scan was actually cancerous.
The doctor at Dana Farber put it this way: "You know, Dr. ______ is a hammer and when you're a hammer, you look at the rest of the world as if it is full of nails. Claudia, I'm afraid you were one of his nails."
So why have I waited more than seven years to tell this story?
Quite honestly, I was just terrified. Not of the doctor (I'd love to sock him right in the nose.) I was terrified to write about the whole episode because it was so absolutely scary to live through. The doctor at Dana Farber cured the spot, and became something of a hero to me.
But I have never looked at doctors the same way after that infamous summer.
I have now for the first time begun to write about the terror and horror of my cancer treatment. I am writing a book, actually, I am writing two books, one fictional, one non-fictional, that are in part about this incident, and in general, about matters related to health and healing and spirituality.
This morning, the two books - Sister Mysteries and Castenata -- converged in quite a remarkable way.
I invite you to my blogs, to read on, to find out how I survived this challenge and also, to see how my encounter with the doctor at Sloan had been echoed in a remarkable way by my fiction almost a decade before (I began writing the novel called Castenata in 1995.)
Even if you don't read further, I hope my experience serves to help others. I respectfully suggest to anyone who is facing any kind of serious medical treatment that you first, always get a second opinion, or maybe even a third or fourth, if you aren't satisfied with what you are hearing.
Second, trust your instincts about your health. Doctors are not infallible. It isn't easy to stand up to doctors, especially when they tout themselves rather arrogantly as infallible experts who should never for a moment be challenged. Doctors save lives, for sure, and despite what he did wrong, the doctor at Sloan did save my life in 2002.
But physicians are not God, no matter if some of them think they are endowed with divine powers.
Especially today, with the infinitely-rich resources and connections available to all of us here on the internet, we "patients" (consider the word -- to be a patient is to be passive and patient!) must educate ourselves. We should always ask questions, and we should strive to inform ourselves about the conditions we find ourselves in. When appropriate, we have to challenge those who might not always have our best interests in mind.
My experience helped inspire my own mother to challenge her doctor. Mom, who is now 84 years old, has long suffered from asthma. At one point, her lung specialist was concerned about her low level of blood oxygen; he wanted her to begin using oxygen around the clock, from a tank that she would have to wheel around the house. My mother said no, that she didn't feel she needed the oxygen and didn't want to become dependent on a tank.
The pulmonologist was insistent and finally my mom exploded. Crying, she got angry and told him about my experience, challenging the doctor at Sloan.
The doctor backed down; my mom enrolled in a hospital-based rehab program to help boost her blood oxygen levels through exercise (what a thought!), and seven or eight years later, she is thankfully still not on an oxygen tank. The doctor never brought it up again.
Amen.