Firing a doctor is not a situation I do not foresee in every circumstance, but it became necessary in mine. The story starts when I was diagnosed with adenocarcinoma.
It was in the recovery room when I first heard the word adenocarcinoma. I had it. My response was “Well, that sucks” and I followed with questions about what was going to happen, what had to happen and what were my chances. Chances. Big question when a well trained medical professional is speaking. He announced that I was terminal. And left.
My description of him in retrospect is is that he has the well trained mind of a medical professional, the attitude of an arrogant SOB and the soul of a grease stain. He forgot all to hell to qualify his prognosis. His idea was that since the cancer had metastasized and it was near the Superior Mesenteric vein, these were just fatal complications. I have since discovered the prognosis he should have pronounced had he the qualities normally found in a human being.
What he should have said was that given that my cancer had metastasized to my liver, and in the area of major blood vessels and since it was pancreatic cancer, both cancers were stage IV, which spreads like idiocy in a stupid convention, until the metastasis had been managed I was in dire straits, not terminal, not dead, not going anywhere soon unless that couldn’t be handled.
When I was finally prepared for chemo I was amazed at the work my primary care physician had done. I was in a cancer care unit about three miles from my house, the chemo was administered through a port in my right shoulder. Stupid me, being a right handed shooter I should have had in placed in my left shoulder. I’ll know next time. Things went well otherwise, regular and predictable.
Chemo is defined by sets and cycles. My chemo was GTX, Gemzar, Taxotere and Zaloda. I went every Thursday or so and took it and walked away with NO ill effects. That is not normal. Most people puke, get all green like sea sickness and ill with bizarre effects. Not me. I walked away, went home, went shopping, took a nap, cooked dinner.
A set of chemo is three cycles, two weeks on oral Zaloda, and the next two Thursdays (for me) I got infusions of the grimy stuff, Taxotere and Gemxar. Then a week off where I tried to live down what modern medical science had done to me. Mostly that was sleeping it off. And so it went. Then two more cycles just like it. At the end of the first set (of six infusions) I was sent for a CT scan. The metastasis to my liver was gone. The cancer on my pancreas had shrunk to stage II or so. It was smaller by half at least. According to a CT scan, which I compare to taking a street map of Chicago by satellite on a winter day. But hell, medical professionals rely on it all the time.
Now, pay close attention here. Listen. Read carefully. The metastasis was GONE. Remember that arrogant little over educated drip of his father’s best wishes? He forgot to mention that absent the metastasis the cancer could be operable. A simple little note that my first oncologist could have read and passed on. He didn’t. But I bear him no ill will, he moved to New Jersey with the highest income tax in the country, not to mention just being New Jersey. My second oncologist took those words as gospel, never questioned them at all. To him I was terminal, his idea was “Let him go through chemo and see if the silly boy lives”. He didn’t spend one minute researching what might be done for his patient he so glibly said was terminal.
It went like that from April to November. Then one day I stated asking tough questions, like how long was it going to be before the chemo cured me? He said, as matter of factly as if he were pronouncing a tire flat “Until you die, chemo alone is not going to cure you, you need to have an operation called the Whipple procedure but you are inoperable.” He was wrong, kill me dead wrong. It took a few minutes on the internet for me to find a surgical team who could operate on me even with the Superior Mesenteric vein involvement. The major change was that the metstasis was gone, not that the vein was involved.
Several communications, an MRI and a bunch of FedEx packages later I was headed to New York. The operation went without a hitch and I became a Whipplet initiate. Then there was the post op infection which knocked down my victory parade somewhat. I came back to the same doctor, same cancer center. There was a side trip to another hospital where they finished the treatment for the post op infection, but I was alive and cancer free.
I was not inoperable. Strike One. A few days later my local oncologist had his staff call me and say that my CA19-9s were high and he wanted another CT scan and blood work. Consult set for the following Tuesday or so. He left for three weeks on personal issues. Great, my oncologist raises the red flag and then boogies for three weeks. I was offered appointments with stand in contractors but I refused wishing to keep what tenuous relationship I had with my oncologist. Finally, I relented and went to see the stand in ‘oncologist’.
She arrived to the exam room 40 minutes late, read the radiologist’s report in front of me. I asked to read it and she said she had to ‘internalize’ the information first. Then she was called away to a phone call from another site where she worked. When she returned she had forgotten our entire conversation. I reminded her that I had a Whipple by pulling up my shirt and showing the scar and telling her briefly how it got there. After an hour and 5 minutes in the exam room I abruptly got up and left. The reason was simple. My CA19-9s were high and she was still trying to pin it on cancer somewhere in the operation area. I told her I wasn’t convinced that was the issue because I was cancer free. She asked if I wanted to schedule a follow on consult and I asked “To what end? if and when my doctor gets back he’ll keep looking for cancer and that isn’t the issue”. The whole issue revolved around CA19-9s being elevated. That can be caused by all sorts of things, like liver function. I left the cancer center and went to my primary care physician who ordered a set of blood work to check my kidneys and liver. I had been on hydrocodon for pain since the Whipple operation, all of my physicians knew that, and hydrocodon has the bad side effect of jacking with your liver. Your CA10-9s can go crazy form that.
My oncologist is back now. But I am going through the steps to transfer my care to another hospital. It is a three hour drive away, but they have a team of five doctors. If one goes on personal leave, the other four can cover for him. They also discuss what the options are for my case, like whether metastasis is an issue, can they operate when a major vein is involved. The very stuff my current oncologist should have been asking and wasn’t. He should have made just one phone call, the very one I made and called and asked that hospital if they could operate. He didn’t. That is his JOB dammit! I made the call and found out in five minutes I was never terminal, after eleven months of staring death in the face.
Had I not I not questioned his judgment and went looking for alternatives I might well be in Hospice or dead by now. That is why I am firing my oncologist. Two strikes and he is out. I could have been out on the first one. The second strike could have killed me. No more opportunities for him. I want to live. Even if it means driving 3 hours one way to every appointment, and there are a lot of them. I am getting more doctors, enough of this one horse operation.
Good night folks.
- Bill Gillmore
