If you are a stickler for political correctness or if you are a white person and you are ashamed of your race, then perhaps you should not read on because this might make you at least a little squeamish or uncomfortable or it may really upset you.
I’m a white guy with Waldenstrom’s Macroglobulinemia (WM). This is a rare form of cancer that afflicts probably no more than 1,500 people a year in the U.S. (Remember our nation’s population is about 306 million). While so many forms of cancer are referred to as “curable” these days, there is no cure for WM. It is treatable. And the best thing you can hope for is that you beat the statistical odds and live longer, way longer, than the average of five years from the time of diagnosis (and I have received e-mails and/or comments on my blog from WM survivors who have). I’m going on two years right now.
But let’s get to the juicy part I hinted at on the top of my blog.
Quite by chance I was initially referred to an Indian (India Indian) oncologist. At first I was awed, even if I did not always understand each word, not only because I lacked medical training, but because of his thick accent and weird phrasing. Subsequently I caught him turning common American idioms on end, resulting in directions that could be interpreted in more than one way. Even so, I was still impressed at his knowledge and his dedication to his profession. He works seven days per week if you include his morning hospital visits (I was in the hospital many times and he never missed a Sunday morning visit). I overheard his conversations with other patients. He loves his golf too. He drives around in a sports car that has a personalized license plate that has his name and then the number 2, implying that he has another one just like it, I guess for his wife.
At one point I was in danger of bleeding to death and he ordered an infusion of blood factor 8 and it did the trick. But that was well into my treatment and I was bleeding uncontrollably when I first visited him. I had a blood-soaked washcloth in my mouth. His attitude at the time seemed to be that, well that was a separate problem, that I would have to see a separate doctor for that. And actually I did, but he eventually was at a loss for what to do so he wisely consulted back with my Indian oncologist, who ordered the factor 8.
And let me stop right here to address a side issue. If you are a patient and you are concerned that you might be in imminent danger of dying a premature death your only choice is to get aggressive and get someone, such as your spouse, to help you. It is hard. You have little power. You also have to become somewhat knowledgeable yourself. You will meet resistance. You either persevere or you die.
When I say aggressive, do not mistake that for belligerent. I know it’s difficult to know where to draw the line. I once was threatened with being hauled off to the local police station while I was waiting for treatment in an emergency room. My beef at the time is that previous experience had shown me that regardless if I ever saw a real doctor I would be charged for seeing one. I was not being cooperative with a male doctor’s assistant who did not identify himself as a doctor, but nonetheless implied that he was, until I asked him point blank if he was and he answered no. I was a little clumsy or ham handed in my approach. My only defense was that I was suffering from terrible mouth sores, felt terrible, knew I had WM, had just gone back to work but had to leave my job again (looking toward a future of no gainful employment and mounting medical bills), and my attitude was if I am going to be charged for seeing a doctor then let me see a doctor. I finally did see a doctor. He was quite nice and sympathetic and totally incompetent, at least as far as my problem was concerned. He should have consulted with my oncologist (but I think this was over that awkward time between Christmas and New Year’s – he still should have done so).
So, what’s my beef with the Indian doctor(s)? Well, as I said, for one thing they are hard to understand. For another thing, they can be quite haughty. This particular one had the Seinfeld Soup Nazi approach. He welcomed questions and then when he got them bristled and blurted out “I’ve already answered that question!”. He also contradicted himself. He once told me to see another doctor about my iron deficiency and do whatever he or she told me to do. I did. When I informed him that I was going to take iron pills he yelled at me: “I told you, no iron pills right now!”
(And just to show I don’t stack the deck against anyone, I will give him credit for being extremely indulgent with my well meaning older daughter who peppered him with questions. I was in the hospital at the time. At one point she actually asked him a question, prefacing her inquiry with the fact she had been told something by one of her friends who was a nurse. I turned my head and I am not exaggerating when I say I nearly climbed the wall in fear of the outburst that was to come. He surprised me and answered her question in a calm and patient manner.)
But coincidentally just before the one time I can pinpoint that he saved my life with that factor 8, he nearly contributed to my untimely death. I was in the hospital to get a blood draw and afterwards my tongue started bleeding. I sat in a chair holding it with my thumb and forefinger for more than an hour (the only known method apparently to stop the bleeding). It finally subsided. He came into the room and announced with a broad smile on his face that: “I will see what I can do to get the bleeding to stop. But if I am not able to, there is nothing more that I can do (shaking his head and grinning of all things).
Everything went blurry, but I was still conscious at some level. I had the sensation that my whole body was sinking into oblivion. I heard myself confessing to being ashamed that I was scared and acting cowardly, but that I could not help it. I did not want to die.
As is apparent, I did not die after all. I was rushed to emergency and given fluids via IV. I was suffering from extreme dehydration, primarily from loss of blood. I had awoke many a night with a mouth and throat full of thick, globby blood (a symptom of WM). I ruined many a pillow case and wash cloth.
When I really became disenchanted with my Indian doctor, though, was after my standard chemo. There was indication that the chemo had been a success. My IgM (WM talk, I don’t want to translate at this time) blood counts were way down, and I was told my latest bone marrow biopsy showed no signs of cancer cells. There was some indication, though, that the chemo had scarred my bone marrow (a common side effect) and that this might be contributing to my inability to bring up my white blood cell count (something needed to restore my immune system).
And this is where my relation with my Indian doctor really went sour. He seemed to completely lose interest in my case and simply shook his head, indicating the only thing I could do was live in eternal limbo.
He also grew even more impatient with questions, most of which he declared like an opposing attorney or a judge: “asked and answered!” and refused to go into the matter again.
At some point my wife and I had to get ourselves a new primary care doctor because our previous one had gone bankrupt, partly due to his ex-wife and bookkeeper embezzling from his practice and partly due to the fact he had gone off the deep end himself. The last time I saw him I thought he was the patient. He was unresponsive, unkempt, and had an empty stare.
I told the new doctor of my desire to get another oncologist. The new doctor was (still is) a woman. She referred me to a woman oncologist. I was not dismayed that this new oncologist was also Indian. Not at first anyway.
On my initial visits she was a breath of fresh air. She had a thick accent but was fairly understandable and she was willing to answer any question, even if already asked.
I began to lose a little confidence when she admitted she was but a beginner. But she seemed so willing to work with me and so nice. And to her credit she did work with the University of California at San Francisco Medical Center and prescribed a regimen of steroid pills to boost my immune system. She warned me that there was no guarantee it would work. The good news is that it did work.
But although my immune system has settled down into a low but acceptable range, some of my other WM indicators have begun to go the other way. At my second to last visit she said I could hold off seeing her for another three months, but that she definitely saw another round of chemo in my near future. She said the experts she consulted with had suggested a less toxic form of chemo that would include an oral administration of the drug Thalidomide (if you are at least a baby boomer, you may recall that is the one that pregnant women took back in the 50s and 60s I think and resulted in deformed babies). Old drugs never die, they’re just brought back for other uses. As I understand it, this would be followed up by IV infusions of Rituximab (something or a variant of something I am sure I have had previously and that was indeed quite toxic).
So a couple of weeks ago, having not seen her in three months, and starting to show some symptoms such as increased fatigue, headaches, and night sweats, I anticipated a long talk. No she was quite perfunctory and simply said I told you that you would have to go on chemo. I was understanding of that, but I wanted more information and a better understanding of this new chemo. Chemo is a mixed blessing. It can cure you or prolong your life, but it also does great damage to your body and may well contribute to your death. She was not in the mood to talk. She had to me moved from the sympathetic and loquacious female doctor to a clone of my Soup Nazi original Indian doctor.
Well, my wife and I showed her. We picked up my records and went to a much-heralded cancer center in town. They have several doctors in the practice, two of them are Indian. That was a cause of reservation (Indian, reservation, no pun intended) for me. I was told that they would review my documents and assign me to the appropriate doctor.
That was on Friday. Got a call already this week and yes I have been assigned to the “appropriate” doctor. You guessed it, one of the Indians.
So what is the proper protocol here? No I’m not like the idiotic redneck white bigot who would consider refusing a life-saving blood transfusion from a black man.
I’m just a white man who wants a learned and sympathetic ear and someone who speaks my language and understands my cultural attitude (such as no inappropriate glee or grinning).
My appointment is still on. I just have mixed feelings.