Sunday, April 29, 2007

Friday, bloody Friday

What do you do when your doctor gets fired?

I am about to find out, and it is not something I expected, wanted, or feel like coping with. The past six weeks have been stressful enough without having my horse taken from me in the middle of the CLL-filled, AIHA-ridden, low-immunoglobulin-can-I-get-some-IVIg treatment stream.

What occurred last Friday was a coup, in the best tradition of the Medicis or the Borgias or the Soviets. One minute Alexander Dubcek, president of Czechoslovakia during the 1968 “Prague Spring,” was there in the picture, the next minute he was airbrushed out.

I have written in these pages about my three hematologist/oncologists. Dr
. Lippencot, the first, was rigid and unbending in her insistence that I do single-agent fludarabine, so I went looking elsewhere. Dr. Chopin, the second, was open-minded if a little skeptical, but treated me with single-agent Rituxan for two years. She decided to leave medicine; her replacement was Dr. Belle, who for the past year has been my horse, my Dubcek, and a doctor with whom I was very pleased.

Dr. Belle is a slight, younger woman, short, not a commanding presence. I know that in the professional world women
are often judged on their looks and stature; it is doubly hard for women who are small or a little pudgy or anything other than Thatcheresque to easily gain the respect of colleagues and coworkers -- and this can include other women, as well as men. And I think we all know by now the truism that a man who stands up for his rights is considered to be assertive, while a woman who does the same is often considered to be a bitch. Whether these sorts of things played a role in Dr. Belle’s eventual fate, I can only speculate.

As I grew to know Dr. Belle, I came to like her and respect her more and more. She is not a CLL expert,
but is willing to consult with experts, and to learn. She did not bring a set of unbending judgments to the table, she did not suffer from a God complex, but this did not mean she was “soft.” Behind the sweet Southern exterior was a willingness and a drive to fight for her patients.

I saw this grit last Friday when, unbeknownst to her or to me, I was the last patient she was to see while employed at the oncology group where I have gone for 3 ½ years. My application for IVIg at the neighboring hospital had been rejected because my IGG was 746, just above normal. A new test pegged it at 436, well below normal, and enough to change a “no” to a “yes.” Dr. Belle said she’d have the nurse fax th
e request over that very afternoon, and she wrote at the bottom of the fax that if this request was not approved she would not hesitate to admit me to the hospital, if that’s what it took to get the IVIg into my veins. She was hoping I’d be able to get it on Monday.

When I left at 1:30 p.m. Friday afternoon, I had no idea that a letter, dated two days prior, and mailed the day before, was starting to arrive in the mailboxes of her patients. This letter informed us all
that, effective Friday, the day I saw her, she was no longer associated with the oncology group.

The irony is that, during my appointment with her, I got the impression that she not only liked her job but had definite plans to stay. She talked about “making partner” in another year. This would mean joini
ng the four male doctors in the practice on equal footing. I am certain that she was led to believe one thing would happen when, behind her back, quite the opposite thing was brewing.

And so, perhaps an hour after I left at 1:30 p.m.
, Dr. Belle probably finally got the news, and was left with a few minutes to clean out her desk. Her patients have been left doctorless, and for those of us in the middle of treatment, this is especially nervewracking. I do not know what compelled the partners to make the choice they did, but I have the sense that it involved personality conflicts more than questions of competence. I am obviously biased, because I liked my doctor and was comfortable with her approach and judgment. And I think the way her dismissal was handled was reprehensible.

And so, my treatment, my file, my life, will now be put in the hands of one of those very people whose method of action I regard as dishonorable. How do I look them in the eye with anything less than contempt? How do I trust such a person with my health care, to make the best decisions, to listen to me and give a damn?

And what are the odds that I will find a doctor who is as simpatico with me as Dr. Belle?


Yet I have to go in tomorrow and fight for someone to make sure I get my IVIg, when I don’t even know who my doctor is. It will be chaotic, patients coming to see a doctor who’s no longer there, patients getting chemother
apy on the orders of a doctor who’s been fired.

And I, of course, am one of them. Who will listen to me when I suggest things like low-dose Rituxan, who will read the abstracts and studies I bring in, who will take the time to pore over Dr. Terr
y Hamblin’s three-part series “What is the aim of treatment?,” which I must once again print out and hand to a strange doctor in the hope that some of it might sink in?

I am left to reinvent the wheel at a time when my coping skills have been already been taxed to their limit. I d
o not know what will happen to my treatment program, and I do not know where to turn when it comes to finding another doctor. There are 42 hem/oncs on my health plan, and I am in no mood to go doctor shopping starting with the “A‘s.”

I do have Dr. Belle’s e-mail address. She established a Yahoo account so patients could communicate with her, which was an innovation in an office where giving work e-mail addresses to patients is evidently verboten. I will write to her and tell her how upset I am that this happened, and I will ask her to let me know if she joins another practice, or sets up shop on her own.

And I will tell her that, if letters of recommendation from patients mean anything when doctors apply for work, I will be more than happy to write one. They probably don’t count, but it’s all I can think of to do.

It will be an interesting week, and I am not looking forward to it.


I made contact with Dr. Belle. Turns out she found out about her dismissal from a patient who saw her Friday morning, then went home and read the letter, and then called Dr. Belle that afternoon to ask what was going on. Talk about a chickenshit way to handle a firing!

Dr. Belle will resume practice, somewhere, somehow, in the next few months, so I will be able to see her again. In the meantime she is referring her patients to another office, where I have made an appointment. They've been inundated with Dr. Belle refugees, er patients. While I am not certain I will adopt the new office, I'll at least check it out.

One reason is that it is simply hard, emotionally, to be in the old one. The atmosphere when I went in Monday for my Rituxan was funereal. Most of the staff was shocked and unhappy about what had happened. As much as they felt free to talk, the didn't see it coming, didn't think it was handled right, and didn't think it was a good idea to begin with. When Marilyn told one staffer that we were thinking of switching offices, the employee replied, under her breath, "I don't blame you."

The hardest thing, for me, is imagining myself in an examination room having to be pleasant to one of the underhanded partners. I'll do it if I have to -- ultimately, the head must rule the heart if it is in the best interest of my treatment. But if this new office works out, I may not be put in that position. In the meantime, I wonder how long I can continue getting low-dose Rituxan without actually seeing a doctor.

It's always something. If it's not one thing, it's another -- Roseanne Rosannadanna


Anonymous said...

Any of us might suffer this fate, as our doctors or other trusted professionals could quit, be fired, or die in a traffic accident or a heart attack.

As well, we might be 'fired' as patients, perhaps for being assertive as patients.

I guess the message here is to be prepared, as best as one can be, to have to go over all of this familiar ground for a new practitioner.

Of course, this can be quite complicated, unlike just changing a tax advisor or a butcher.

It does cause on to hone one's persuasive skills, however.

Nancy said...

Funny, I just had my first "crisis" when I found you. I am not mutated, in my fifties, Trisomy twelve. Dx'ed in 2005. Chaya's middle bucket. Ahh...breath easy. No rush. Years to go. Last month, my neutrophils bottomed out. BMB revealed that my bone marrow was packed with CLL 85+percent. I think you said in your blog that is why people die. The BM flat lines. All of a sudden I am in the worst bucket, I am on red alert.

I get myself to OSU, Dr. Lin, all my other numbers are decent, lymph decent, RBCs decent. He says to me, no problem child, FR, and, if that doesn't do the trick we have some more chemo to mop up what's left.

I come home and read like a speed-freak everything I can and my gut says...NO FLUDARABINE. I write Chaya and miracle, she writes me back, points me to the article on low dose R. I write Terry Hamblin and the GOD of CLL writes me back! (am I blessed or what?) and he says maybe steroids might nudge it back or Chlorambucil.

Now, my gut continues to tell me this. Why in the hell would you drop an atomic bomb on your body to kill the CLL, when in about 33 months it comes back with a vengeance and now you have a raging disease and a bombed out house. Why would you do that?

What does a CR really mean, if the disease returns in 33 months. It is like fool's gold.

Why if the disease returns, why not keep nudging it back as best as you can while staying alive and keeping your body as healthy as possible.

So, I decide on low dose Rituxan. Can't find an onco in Cincinnati that will do it yet, but I will keep trying. It can't hurt to try it.

Took some Neupogen that got my neutrophils out of critical and back to normal. Don't know how long they will stay up and know I need some treatment....and what do I find today for the first time?

Your blog! Is that karma or what?

Your low dose, my way of thinking blog!

Hopefully, even for a desperate, bad to the bone marrow grrl like me the low dose Rituxan might buy me a year or so before Chlorambucil.

Love your blog it is just the best.



David Arenson said...


Glad to hear the blog has been of help to you. Welcome to the CLL 'funhouse," where nothing is as it seems! But it sounds like you're doing all the right things to educate yourself. Best of luck in your joruney!