Sunday, June 10, 2007

Thus saith the Lord

Those who follow this blog know that I am an agnostic, but I have now found God: He is about 6' 2" tall and practices his craft in Phoenix, Arizona. There may be another God in Heaven, but the one I encountered definitely thinks he rules on Earth.

I am talking, of course, about a doctor, with whom I consulted recently, and who had been voted one of the "top doctors" in an annual poll of doctors in Phoenix. Having doctors name each other "top doctor" is probably a bad thing, as it might, like too many people in a crowd chanting "Long live our great leader Kim Jong Il!," go to the head.

I should pause here and say that, despite my blogging about the fallibility of doctors, I have found most of them to be not unpleasant and not unreasonable. Indeed, when I was a waiter in the Catskills as a teenager, doctors were known to be only the third craziest class of customers, after lawyers and, the very worst, magicians.

This doctor, who I’ll call Dr. Lord, is the seventh I have seen about my CLL. I went to him on the recommendation of my former physician, Dr. Belle, the one who was dismissed from practice at the place I’ve been going for more than three years. She referred all her patients to Dr. Lord for some reason, and I entered the office with the expectation of switching to his care. Later, after our experience, Marilyn theorized that perhaps Dr. Belle’s recommendation was part of a Machiavellian plot: Her patients, having experienced the overbearing Lord, will come running back to her in droves when she opens her own practice.

Now I can hear a few of you, probably the doctors who read this blog, thinking that I must be exaggerating, that I must be suffering from hemolysis of the brain or something. Maybe I have unreasonable expectations, or I was having a bad day.

Well, maybe he was having a bad day, because I have never had such a lousy experience in a doctor’s office, and that includes my visit with a 50-something GP who wore matching yellow hip-hop clothes and used a matching yellow pen. LL Cool Doc sprinkled his analysis of everything with jokes so bad that you couldn't tell if he was being serious or not, and he was obsessed with those obnoxious plug-in air fresheners, which left me wheezing and gasping in every room of his office.

Dr. Lord, on the other hand, looked the part. Yet he managed to sum up for me in one towering package almost everything that is wrong in doctoring.

* * *

The visit began with a conversation in his office, in which Marilyn and I waited for about 20 minutes before the door opened and a bald vision in a white monogrammed coat stepped forward. Unsmiling, all business, he shook our hands, picked my file up off his chair, where it had been arranged just-so by the nurse, and sat down. Now I don’t really mind the unsmiling part, and businesslike people can be very helpful, so at this point I was still optimistic that I might learn something of value and have some of my pressing concerns answered.

One such concern was my fear, borne out by recent CBCs, that my AIHA could be backsliding. Another was a very recent rock-like drop in my platelets, which had always been in the normal range until tested a few days before my visit. It might have been nice to discuss these issues, as well as my low immunoglobulins and my still unrequited quest for IVIg, but Dr. Lord would have none of that.

Now, to be fair, he needed to start where he needed to start, He was pretty ignorant of my case, and it was apparent that the copies of the medical records sent by the office where I had been going were random and inadequate, as if chosen from my phone-book sized file by a chimpanzee given 60 seconds to complete the task. (I believe in privacy rights and I don’t necessarily trust computer databases to keep things secure, but the idea of having medical records available online is not such a bad one.)

Dr. Lord began by asking about my date of diagnosis and treatment history. It became clear almost immediately that, in his view, I should have had chemotherapy back in 2003, at the very beginning. This is because my WBC was 144,000 upon diagnosis and my first hem/onc, Dr. Lippencot, wanted me to have chemo. He even made a point of saying that he knew Dr. Lippencot personally.

Lippencot had insisted that I use single-agent fludarabine and appeared to be a rituximabophobe, but I sensed that it would not have gone down very well to have discussed why I was hesitant to pursue that course. So I talked about how I changed doctors and opted for Rituxan monotherapy because I was otherwise in good health and thought, based upon the one prognostic test available to me at the time (CD 38), that I had a reasonably indolent case. It was obvious that he didn’t approve; hindsight is always 20/20, though it can be argued, even in hindsight, that I was not wrong in my thinking.

I should say here that I am aware that a somewhat informed patient can come across as a little threatening, perhaps, when visiting a doctor, especially for the first time. But I was not there to impress him or to convert him to a certain philosophy; I was there to (try to) have a conversation between adults. I was not shopping for a doctor who would always agree with me; I was shopping for a doctor who I felt I could trust. There was nothing about me that should have put him off; I am fundamentally a polite individual, not given to being overbearing (except, occasionally, in print). My goal was to learn; as informed as we patients may be, our doctors have a breadth of experience that we do not, and it behooves us to give them a fair hearing. As part of that process, it also behooves them to listen to our questions and concerns.

It soon became apparent that Dr. Lord was not interested in anything I had to say, or in anything I wanted to discuss. When I tried to explain the idea that CLL is incurable and that treatments need to be intelligently staggered and that there was actually some debate among experts about when watch and wait should end and what treatment is most beneficial when it does, I might as well have been talking to an immovable statue, as the Greeks did at the temple of Zeus. (I got the sense that if he could have thrown a thunderbolt or two at me, he would have; indeed, as time went on, he would lob a couple of metaphorical ones my way.)

In a vain effort to explain my current treatment, I handed him some abstracts on low-dose Rituxan, which he was not familiar with. He scanned the abstracts brusquely, annoyed.

I was obviously interfering with his Mind, which was already Made Up, and which had been so within the first few minutes since we entered his Presence, and after viewing medical records prepared by monkeys. He did not even bother asking about any of my treatment history past April 2005, nor did he ask about symptoms, and at one point he just assumed I was having night sweats although the opposite is true.

When, in an exasperated effort to build even the tiniest bit of credibility with him, I mentioned that I had seen a couple of CLL experts, and named their names, including Dr. John Byrd, it backfired. This was because, I realized, Thou shalt have no other gods before me.

Even then, I was willing to give him a chance. He might be a little touchy, but still I might learn something.

"At my age, given my disease," I told him, "I expect one day that I’ll need a stem cell transplant. Dr. Byrd, who told me last year to watch and wait and then use Rituxan again, said I should save FCR for transplant preparation."

I may as well have gone into a mosque in Teheran wearing a tallit, bearing the Torah, and throwing kreplach at portraits of the Ayatollah.

"I don’t believe in transplants," he declared.

There was a heavy silence in the room, and then I asked why.

"I did a couple of those and the blood cleared for a year or a year and a half and then the disease came back," he said. "I had one person who had a transplant and had a lot of problems for the next 18 years."

I wanted to say, "You mean you did a transplant on a CLL patient who got 18 years out of it? Maybe you are a god!" But somehow I got the impression that this was not the form of worship he wanted to experience.

I tried telling Lord that a transplant might be my only hope for long-term survival, but he essentially said to stop worrying about it and just do chemotherapy.

"Treating CLL is not rocket science," he said, annoyed. "We’ve been doing it since the 1950s. You’ve got to kill the clone."

Yes, but what do you do when the clone comes back?

At this point I realized things had no chance of going well, since "no transplant" was a tenet of his faith, as was "don’t worry about it" when you relapse from chemo.

Just believe.

Alas, this did not inspire a great deal of faith on my part in Dr. Lord.

* * *

The transplant issue is interesting as it relates to communication, as well as the establishment of trust and confidence. Later, another patient I know saw Dr. Lord and was given the same line about transplants. This patient had the presence of mind to ask, "Do you mean autologous or allogenic?" and Lord replied that he did approve of the mini-allo, not the traditional autologous with its attendant heavy-duty radiation.

Now, was it my role as the patient to suss out what the doctor meant when he said, with great solemnity, ‘I don’t believe in transplants.’? Am I a patient, or am I a psychic? Lord's unwillingness to expand on the transplants he believes in and the transplants he doesn't created a crucial problem between us -- it was at this point that I decided that he must be pigheaded and set in his ways, as well as a little out of touch with current practice. A willingness to discuss the transplant question with me in a little more detail might have avoided this misunderstanding, but he was dismissive of my concerns throughout the interview, even big ones like "eventually I think I'll need a transplant or I'll die."

* * *

The second part of our rather rapid audience, er appointment, involved retiring to the examination room and some poking, prodding, and out-and-out pontificating.

It was interesting, because Dr. Byrd gave me the impression last June that it was doubtful that I had ever needed treatment up to that point, even while I was doing all that Rituxan. Dr. Lord insisted that my care had been "completely mismanaged" from the beginning by not being treated at the outset with something heavy-duty. I had "futzed around" with Rituxan and might very well pay with my life. I could be "using it up" right now, in fact. (That low-dose Rituxan has lowered my ALC to within a few thousand points of normal, which is far lower than standard-dose did last time, would have been fodder for further derision, had I been given a moment to talk about it.)

When, speaking of monoclonals, Marilyn innocently mentioned that HuMax CD-20 would be on the market in a year or so, he looked straight at me and said "If you live that long."


The giver of life was, at this point, passing a death sentence.

Fans of the TV show Stargate SG-1 will appreciate the fact that, at about this point, I was expecting his eyes to light up and his voice to deepen, and to hear the words, "Bow before your God!"

Now, I am not arguing that the time for big-gun treatment may be getting closer, especially as I seem to have some autoimmune issues. And certainly there are those who make cogent arguments that a deep remission might ultimately be beneficial for some CLL patients. Whether they are right about this is a matter of debate, of course, at least outside Lord's office.

Dr. Lord laid his hands upon my abdomen and neck and determined that I had a few 4 cm lymph nodes, a spleen 5 cm below the costal margin and a liver about 2 cm below the costal margin. This served as confirmation to him that I am indeed an idiot, even though those numbers are somewhat shy of meeting the NCI Guidelines for Treatment.

Big-gun therapy would not be easy, Dr. Lord warned, piling it on with a certain relish. "There is a 70% chance you will end up in the hospital with sepsis," he prophesied. "You will have to be on all sorts of medications: Bactrim, diflucan, acyclovir . . ." as if this was something I had brought upon myself by not undergoing the One, True Treatment sooner. The fact that I had just been on all those drugs while doing steroids for AIHA, and that some of them are standard prophylactics for CLL patients who undergo immunosuppressive therapy, did not enter the picture.

The moment of highest drama -– next to the pronouncement of my death sentence of course -– came when Marilyn reached into the briefcase we had brought (Oh you leather repository of insolence!) and took out a study by Dr. Byrd that shows results of FR therapy by FISH and mutational status.

Dr. Lord scowled, looked across the room at the paper in her hand and said he "would not be intimidated" by "patients who try to intimidate the doctor."

You’d think we were there in metal-studded black leather jackets, flashing switchblades, and that Marilyn was curling her lip and popping gum as she spat out the words, "Yo, Dr. John Boid says here in this study that my man here is only gettin’ two years outa that there freakin’ therapy."

What she did manage to get out edgewise was the word "prognostics," which led to this commandment from Dr. Lord: "Ignore the prognostics. Just do the treatment and go on with your life."

"But what do we do when he relapses?" Marilyn asked. "I don’t want to be a widow!"

"We have R-CHOP and some other things we can do," he said. R-CHOP, ay? Dr. Lord’s religion is based on some rather ancient texts, I guess.

"So," I finally asked, asking the only question I could ask, the only one that would elicit any kind of response that did not involve being insolent in the eyes of the Lord. "What do you think I should do?"

"FCR," he replied, and then, as he scribbled some notes, he added that he usually recommends PCR (pentostatin instead of fludarabine).

"So why are you suggesting FCR?" I asked.

"Because you mentioned it before."

I was floored, and not in a brought-to-my-knees-in-prostration kind of way. He was treating me on the basis of my having mentioned a treatment? Not a lot of thought was going into this, I surmised.

Dr. Lord finished his scribbling, which involved orders for a number of tests that he didn’t bother to explain to me, and stood up, signaling that it was time to go.

"I’ll be gone for several weeks during the summer," he said. "My nurse practitioner will handle the details."

Me, 70% sepsis boy, doing whatever-it-is plus CR under the aegis of a nurse practitioner? Talk about tests of faith . . .

* * *

As we left, we found that Lord’s office is run like a cattle yard, with patients herded through this and that process by people who are either clueless or apathetic. The order is handed down by Lord, and then the patient retires to the waiting room until someone shows up and calls their name for whatever it is that needs to be done -- blood test, scheduling, getting a question answered.

Indeed, in the spirit of its leader, the office is not geared toward answering questions. When I was in the blood lab and asked what tests Dr. Lord was running, the chirpy tech in the white coat said "Lots!"

Marilyn was beginning to grit her teeth and turn red and I sensed that if the tech did not respond with a better answer soon, her entrails would be wrapped around her neck.
So I asked to actually see the order, and I was looked at like I was an alien from outer space, and then finally handed the document. There was the usual stuff, and there was also a FISH test, and I figured it would not hurt to check the FISH after my recent low-dose Rituxan and steroid therapy, so I went ahead with the tests.


Later, at checkout, we discovered that Dr. Lord had ordered a CT scan of my chest and abdomen and also a chest X-ray. The obvious question, which had to be asked, was "Why a chest X-ray when I'll be getting a CT of the chest?" The scheduler was clueless but said the doctor was now "too busy" to answer the question and that she would find someone to help us if we would just retire to the waiting room and wait until my name was called.

A nurse of some kind showed up.

"Isn’t the chest X-ray a redundant test and extra radiation that I don’t need?" I asked. She fumbled for words and seemed unable to answer and Marilyn tried repeating the question several different ways, each time with a slightly louder and more impatient tone, and finally the nurse gave the only answer that really made any sense given our experience that day:
"Because he wants it done!"


Thy will be done, on Earth as it is in Heaven.

* * *

EPILOGUE

We left, shell-shocked, and over a bowl of pho at a Vietnamese restaurant realized that Dr. Lord wasn’t right for us. The experience left me dazed and confused emotionally, and it took me a few more days to get past it, frankly. When a doctor tells you your death is reasonably nigh, there’s a small part of you -– the part that has been conditioned to believe what doctors say -– that thinks, at least for awhile, "Maybe he’s right."

Later that week, back at the old practice, I saw one of the doctor partners who had fired Dr. Belle, which, of course, had upset me greatly. He turned out to be a reasonable human being, with a decent knowledge of current thinking about CLL. He examined me also, and noted the size of the spleen and liver without curling his lips in disgust. "I’d be surprised if they weren’t swollen," he said. He gladly took the abstracts about low-dose Rituxan and was quite impressed at how well it had brought down my counts, insisting that I continue with it for three more weeks, completing the 12-week protocol. We also touched on various other treatment options, and I expect we will discuss them in detail soon.

And more good news: As if by magic, both my red counts and platelets turned around dramatically for the better when tested just before my meeting with the second doctor. Maybe Dr. Lord had put the fear of God into them.

I left with the feeling that I could probably trust this new doctor and that I could work with him. A good doctor-patient relationship is a partnership, which involves some give and take and a willingness to question assumptions in both sides. This process is what builds trust and respect.

I could not, and would not, leave my care up to someone with a God complex, no matter how many diplomas on the wall, or how many votes received in a poll. Dr. Lord might even be a good doctor in some respects -- who knows, I might even follow his advice about treatment -- but trust, like faith, must be earned, not assumed. And personally, I have always responded better to the concept of a compassionate God than to a vengeful one.

AFTERWORD

Some time later I found out that Dr. Belle was not recommending that her patients see Dr. Lord but rather another doctor in Lord's practice. This message got muddied, however, as word circulated from patient to patient. Eventually Dr. Belle formed her new practice in partnership with this other doctor, who had been working at Lord's and who was glad to get out of there. I had a chance to speak to him and he described Lord as being akin to "the great and powerful Oz." I had to laugh, and it was reassuring to know that someone who worked intimately with the Great One had reached the same conclusions as I. -- November 19, 2007

12 comments:

Jenny Lou said...

I kept thinking the whole time I was reading your latest experience with Dr. Lord that it was such a good thing that I wasn't in the room with you. I am sure Dr. Lord would have had me sentenced to a life in hell. I can't imagine any patient staying with this kind of person. The sad thing is I personally know a neurologist who is a Dr. Lord in and out of the office. Not a nice man and his 4 marriages are testament to this.

I hope you can wash your mind and hang it out to dry away all things Dr. Lord said to you. You have done nothing to make your disease progress. You have done everything correctly, David. Everything. I am glad you found another Dr that is more to your liking. So sorry you had to go through this unnecessary anxiety. I say, Screw Dr. Lord and all of his Kingdom.

Anonymous said...

What a nightmare! I hope no other patient has to put up with this megalomaniac. I'm surprised you had the tests done. I would have walked out of his office and kept on walking.

Luckily the one in the old practice was OK. Or perhaps the onc doc you like will land in a practice soon, and you can see her again.

R-CHOP, though, is still used in lymphoma and can be quite effective. It's also used in Richter's.

What a weird experience. Are you sure you didn't dream this???

Dr. Boid, huh? Funny.

Vance Esler said...

As usual, a well-written account that makes me (as a hematologist) cringe. Yet I could not stop reading, wanting to see how the story was going to end. Glad that it ended more happily.

Like you, I don't know how guys like this get to be "Super Doctors." It may have something to do with the BS effect. It sounds as if he may simply be burnt out. (No excuse, though.)

Richard said...

Happy Birthday David.

Sorry to hear about your stressful meeting with the doc. I go visit a new doc. in two days time!

Did you ever get a reply from Prof. Hamblin re: a possible reason for the X-ray as well as the cat scan? I may
have missed it.

Keep well.

David Arenson said...

Thanks for the comments, all. I think Marilyn was tempted to walk, but I was tempted to gawk, as people do at traffic accidents. In retrospect, I accept Lord's opinion about treatment as part of the spectrum of advice I have been given, albeit his is on the extreme end of one side of the spectrum.

Richard, I never heard from Dr. Hamblin on the question -- for those who don't know, I posted to the ACOR list asking whether there is a legitimate reason why a chest X ray would be needed when a CT scan is also being done. Terry is quite busy and I figure he is probably helping patients with more important questions, so I'll not pester him about it.

Vance, your piece provides some excellent perspective and I would advise those reading here to click on the link and take a look. I much prefer a doctor who says, "Hmmm. Let me think about this" or "Let me look that up" to one who claims to know everything off the bat. Doctors are not gods and this cuts both ways -- they shouldn't, like Lord, act as if they are. But patients should not expect them to be, and should allow time for the doctor to gain whatever perspective the doctor feels is necessary.

I agree with you, by the way, that a good local practice can be superior to a big cancer center. At a cancer center, treatment recommendations often seem to match the trials that the cancer center is running. A local practice can act as a dispassionate source of perspective on these options.

For example, I was thinking about R+HDMP at one point but Dr. Belle thought it was too much steroid. So we took the basic idea -- Rituxan plus a steroid -- and worked with it. Dr. Belle read the abstracts I brought in about low-dose Rituxan (which would not have happened at either OSU or UCSD, where I have gone to consult with experts). The protocol we fashioned together -- low-dose Rituxan + comparatively low-dose methylprednisolone, would not have been possible at a big cancer center.

Anonymous said...

This reminds me of the time that I consulted a newish doctor not much older than me. I had a foot complaint. She excused herself saying she remembered notes from medical school; she wanted to look up what was said.

Contrary to being annoyed that this woman was not 'god' I appreciated the refreshing attitude. I felt that I was consulting someone who had been taught what I had not been.

Her advice upon the retrieval of her notes (which she shared with me) was right on the button.

We need more docs who can justify their decisions instead of just saying, 'chlorambucil!','Rituximab !', 'FCR!', etc.

Anonymous said...

Oh, David, I'm sure it was sooo traumatic for you, but your blog made me laugh out loud! Too bad it was at your expense; what a pompous ass! But what a great story!
Marcia
dx'd 2000 & AIHA currently

hal skye said...

David---I would be interested in learning of the results of your abdominal ct-scan. In my case I was deluged with swollen lymph nodes everywhere in the abdomen which led me to treat with R+F. How is the methylprednisolone affecting your glucose levels? I had to reject this tx. because I'm diabetic. Your post on Dr. Lord is brilliant. Edit it if you can & post it on Acor, asking for a critique by Dr. Hamblin. Good luck. Hal Skye.

Aditi said...

David, Thank you for sharing your awful experience in such a delightful way. We all wish you were sharing a delightful experience, and we wouldn't care if it wasn't written awfully or delightfully! But you always write delightfully.
I have been so blessed with a wonderful doctor -- as anonymous described her young foot doctor, my oncologist is a young, straight-out-of-residency wonderful woman who has no problem accepting my desire for more natural approaches (although she does sometimes put limits on it) and always seeks others opinions if appropriate. She works very well with my CLL Specialist. I'm very lucky - but only after "firing" my first onc of 4 years.
BUT today was my experience of a Dr. Lord, except she was a Nurse Practitioner! My onc was on vacation and oh boy, did she get me mad! Arrogant, insensitive, and putting forth her own agenda, almost in contradiction to my own doctor. I was so upset, I didn't do anything in the moment. But I will tell my onc on her return, and if she doesn't feel comfortable saying anything herself, I will talk to this NP myself or else to the head of the practice! It's just so unfortunate when you and I and so many others (many of whom do not speak up for themselves) have to deal with such people!
Well, glad your story ended with a doctor you like and hope it only gets better for you!

Vance Esler said...

By the way, to answer your question about the chest x-ray: The CT provides much more information than a CT. But sometimes there may be something in the chest that we want to follow frequently. If it is something that can be followed well enough with a chest x-ray, then it saves the expense and radiation exposure of having to do monthly CT scans. So we get the chest x-ray at the same time as the CT, but each for different reasons.

Vance Esler said...

Whoops. I was trying to talk to someone and type at the same time.

I meant to say that the CT provides much more precise and complete information than a chest x-ray.

Terry Hamblin said...

I ask myself why some people become doctors. It rather reminds me of a question I heard last week on television. 6 contenders for the position of deputy leader of the Labor party (which roughly equates to your Vice President which Lyndon Johnson said was worth a pitcher of warm spit) were being questioned by the studio audience. One of the contenders was defending Labor's record ,"since we've been in power."

"Excuse me," said the lady, "I thought you were there to serve the people, not to wield power over them."

Anyway, David, you've had a fortunate escape.

Sorry not to have got back to you over the CXR and CT question. The answer is that the CT scan is of course much more sensitive and it is unlikely that the CXR will pick up anything different, but it might well show up something that is present on the scan that needs to be treated. A second scan will be needed to show that it has resolved, but there is no point in doing one until it has gone from the less sensitive chest X-ray.