Second blogiversary

My, how tempus fugits. Another year of blogging has now passed and CLL Diary enters Year Three.

I recently made a point of rereading everything I have written to date; the purpose was to keep the blog in good running condition -- to do things like fix broken links, and to add updates and afterwords where I thought appropriate if I have new information or further comments that might be of use.

But it also gave me a perspective on how my disease has changed and progressed, and how my reaction to it has also. I feel a bit older and wiser about chronic lymphocytic leukemia now than when I started, and I feel as if I am starting to hit my stride in terms of perspectives on treatments, balancing risks and rewards, and so on. (Of course, every time I think I have things sort of figured out, something comes along to humble me again; 'twas ever thus with CLL.)

I do this blog for two reasons. The selfish one is that it serves as a creative outlet; I have been a writer all my life and, as they say, "write what you know." The second reason is that I have a genuine desire to help other patients and their caregivers, and if any of my experiences and perspectives prove useful to you, then it is profoundly gratifying to me. Eventually, after my transplant and my cure -- I am an optimist by nature -- I could see working as a patient advocate if there is some way of making a living at it. So far CLL has been a vast sinkhole for time, energy, and money.

I will continue CLL Diary for the foreseeable future, even as I expect the next year to bring some big changes in my life. More on those as they unfold.

And I will continue to follow the credo that I started with: to be honest and true, to discuss my bad choices as well as my good, and to tell it as I see it. Only then does this blog have real value, and the exercise of writing it serves to keep me honest to myself as well as to you.

Late night thoughts on chemo and CLL

I am sleepless in Sedona, up in the middle of the night, thinking. It is the writer’s curse to be filled with ideas at inconvenient times.

I have written a lot about chemotherapy in this blog without actually having had any (Rituxan being immunotherapy, and a lot easier on the system). Now I am having it, and am coping with both the joy of success –- watching my red counts recover rapidly and the color, such as it was, return to my cheeks –- and some of the side effects: I am highly sensitive to vincristine as I have some numbness in my fingers after just one dose, and it was a half-dose. The cyclophosphamide is challenging me with hyperglycemia –- which, on top of the effects of the steroids, means I am on a Draconian no-glucose diet, at least temporarily.

But I don’t care. The big picture is that my back was to the wall and I did what I had to do and I am glad it is working. That big picture is the thing we CLL patients constantly try to grasp, yet there are so many mirages in CLL Bizarro World that we are often left clutching a fistful of illusions.

So I want to say some things about chemotherapy and also about CLL, provide some perspective I have been gaining.

The CLL lullaby

The first brain muddle we patients get into is that we all have the same disease. There was a time a couple of decades ago, when CLL was poorly understood, when that appeared even to the experts to be the case. And when it also appeared that survival and response to treatment had more to do with luck than anything else. Now, while luck plays a role in everything in life, we know today that CLL is not the same for all of us.

A reader of this blog wrote me and said, “I know someone who has had CLL for 30 years.” When I first was diagnosed I began trolling the internet for stories of people who had had CLL for a long time, concrete examples to hold on to, and I began to write them down in a page in a journal. And then as time went on, I came to know some of these people myself. More power to them. They are alive after all this time because they have very indolent CLL, possibly this asymptomatic lymphocytosis that Dr. Terry Hamblin writes about, possibly something a little worse than that but still so low-level as to be kept in check by their own immune systems or to respond to therapy for a long, long time. These are the people with IgVH mutated status who also have things like a deletion on one arm of the 13q gene, and who are CD38 and ZAP-70 negative –- Chaya Venkat’s Bucket A and A+. For the most part they do not have great secrets to tell us about how to overcome CLL. They are not geniuses; they are fortunate. They overcome CLL because for them it is a low-level, indolent disease -– the very picture of the “good cancer” –- and it is not really the same disease that the rest of us have.

This is why prognostic tests are important. They do not provide a complete picture, but they do give us the outlines. They do not always follow true to form –- you can have good markers and bad disease, and more rarely bad markers and not-so-bad-disease –- but they generally do. There are no doubt prognostic factors that have yet to be ironed out, discovered, entered into the CLL vernacular that will one day show us more. But today’s tests -– IgVH mutational status, FISH, CD38, ZAP-70 as done at a reliable research institution as opposed to a commercial lab –- will tell you a lot about your CLL.

Not getting them done is, to my mind, just plain stupid. When you’re first diagnosed and you’re feeling scared and vulnerable for a while, I can see holding off. But after you’ve gotten your CLL sea legs and realized that you’re not going to keel over tomorrow, it’s time to grow up and get real. Knowing your prognostic score, as it were, gives you more of a fighting chance when it comes to choosing the right risk-adapted therapy and in planning a long-term strategy.

That is, of course, if you acknowledge and act upon the results and don’t go putting your head in the sand when you hear them. But putting our heads in the sand is one thing we do because we are human, and also because we are encouraged to do it from the very beginning. We are told we have the “good cancer,” which leads to complacency. Even if we are not aware of it, it gives us subconscious permission to ignore CLL, to downgrade it, to pretend it won’t hurt us. (The fact that most of us also have a period of years before the disease begins to significantly impact our lives reinforces this misconception.) We are told “you will probably die with it, not because of it.” Well, that is true if you have an indolent form. Or if you are diagnosed at, say, 70, when your natural life span is starting to skate on statistically thinner ice anyway.

But that is not true for us younger people, and I know people diagnosed with this disease who are in their 20s. I know a young mother who is in hospice. I know that for those of us who are younger than 60, unless we are blessed with Bucket A CLL, most of us will die because of the disease and not with it, and we will die earlier than we would otherwise. Except for those who are saved by a transplant, which is the only cure we have for now. So therein lies hope, and it is where mine resides.

Transplants are tricky. They might cure you, they might kill you. Chaya has written with cautious optimism about them. Terry reminds us that life after a transplant can be hard to endure. Like so much having to do with CLL, the results are individual. Some people do well with minimal fuss, others struggle with nasty issues of graft versus host disease. My view is that the risk is better than the alternative.

Doctors

Which brings us back to chemo, sort of, except that I have another tangent first:

CLL is a confusing world in which patients still have trouble getting it into their heads that one size does not fit all, and that we do not all leave the starting gate at diagnosis in the same shape (and that clonal evolution can also change the order of things). Unfortunately, this thinking is reinforced by legions of local hem/oncs who have the same idea. CLLers form a small percentage of their practices and they deal with much more dramatic cancers, where life and death is indeed compressed into months or a few years. In that perspective, CLL is comparatively a good cancer. But as John Byrd has been heard to say, the only good cancer is the one you don’t have.

The bigger point here is that in my unscientific estimation from reading countless patient accounts, roughly half the hem/oncs out there are incompetent to treat CLL and its complications to an adequate standard. They are not up on the current thinking on prognostics, they are not up on the latest treatments, they don’t even know to put patients undergoing treatment on prophylactic meds, they’re fairly clueless about the laundry list of complications such as AIHA and ITP, they have no sense of the subtleties of when to end “watch and wait” and when to start treatment, they are so undereducated and inexperienced as to have little ability when it comes to the art of medicine as it relates to CLL. My history of having to fire doctors is not uncommon.

All this speaks to why you should see a CLL expert. I’ve seen a few. They may tell you different things about what to do if you need treatment, but there will be a sound reason behind each of their approaches. One must remember that even our expert doctors can only make the best possible guess as to what is right, and that the art of medicine does not guarantee a particular outcome. ("We like to pretend that medicine is an exact science, and that is hogwash,” Dr. Michael Keating told a friend of mine.) This is true of doctoring in general, and I would be remiss if I did not say that there are many good, dedicated local hem/oncs like my Dr. Belle that do all they can do to provide excellent care in our oft-befuddling landscape.

So, seeing an expert is essential. As is finding a local doctor who does their best to stay current on CLL and who is willing to work with you to understand it even better. The quality of your doctor(s) is a prognostic factor that influences your overall survival just like IgVH and the other medical tests.

Chemo

Now, back to chemo. Like many patients, I started out after diagnosis being afraid of the word. “Chemo” is a loaded term in our society. It’s what desperate, really sick people do. It means a bald head that makes you stand out in a crowd. It means being attached to bags of fluids in a room filled with people who are fighting for their lives. It means relatives who suddenly look scared, friends who whisper. It means chemicals with a laundry list of potential side effects getting into your body. It is all these monsters crawling out from under the psychic bed, shouting at you in the face: This is serious! You could die!

The subconscious idea that we CLLers have a “good,” indolent cancer predisposes us to not want to believe that such a serious thing as chemo is necessary or even right for us. After all, many CLLers do go on and on and on without it. But we are not all equal out of that starting gate, remember?

I have long had trepidations about the side effects of chemotherapy, not so much the annoying, mostly controllable stuff such as bald-headedness, peripheral neuropathy, and high glucose. More the uncontrollable risk of developing disease resistance to further therapy, a mucked up p53 pathway, an immune system so suppressed that Richter’s gets going, the big picture kind of stuff. This is why I have sided with the school of thought that believes in graduated treatment, soft-glove first. Arguments of merit can be made for the opposite view, the “nail it” approach. I do not fault those who go that way. I am happy when I hear a patient say, “I had FCR and my report now shows no detectable CLL anywhere in my body.”

I have also had trepidations because I have seen chemo be, for lack of a better term, abused. Abused by those local hem/oncs who really should not be treating CLLers, the kind who treat too soon and who treat with, say, single-agent fludarabine –- years after CLL experts agree that it is no longer the right approach.

I have expressed all these things in this blog, but I have not expressed enough of the following, so it stands here to be said:

Chemotherapy is an invaluable tool that should be used when it is needed. It should not be avoided at all possible cost. It should be used at the right time, which is tricky in CLL, and which is why you need to see a CLL expert and/or have a good local doctor who understands the current guidelines for treatment and who has some grasp of the art of medicine. And which is why you yourself should educate yourself as much as you can.

Timing is everything; my AIHA made the decision easy for me. I am glad the chemo was there to deal with the problem. When macrophages are eating your red cells with the ferocity usually found only at Nathan’s annual hot dog-eating contest, chemo starts looking mighty user-friendly.

When I had my first round of R+CVP a couple of weeks ago and the cyclophosphamide went in and the vincristine was injected, it was simple, it was painless, it all came in clear liquid just like the Rituxan, just like the saline. That is how it looked physically. What was being injected, psychically, was power, was purpose, was hope. Drugs ceased being a compendium of potential side effects –- the trees -– and started looking more like something that would prolong my existence –- the forest.

As Chaya points out always, there is no free lunch. Perhaps I have set in motion some things that I will not be happy about later. But in the risk-reward scale, there is no doubt in my mind that the rewards were worth the risks. Sometimes we must fight fire with fire and either may burn us.

Finding out when the rewards are worth the risk to you is one of the keys to success in battling CLL. Taking action in that window of time is the right thing to do. I once wrote about opportunity costs, a concept that I got from talking to Chaya and her husband PC, whose familiarity with so many patient case histories has given them a good perspective on the lay of the land.

Not taking action, refusing to believe things are as bad as they are, hanging on to some subconscious idea that CLL is still a “good,” indolent disease that Joe Blow has been living with for 30 years without chemo so why can’t I, that is foolishness. Lullaby and goodnight.

The best rule of thumb I can come up with is this: If you have aggressive disease, treat it aggressively. If you have progressing disease that is getting you into trouble, treat it as intelligently as you can, but treat it.

And do not go it alone. Go it with a good local doctor, go it by seeing an expert, go it by reading CLL Topics religiously, go it by reading Dr. Hamblin’s blog and keeping abreast of his answers on the ACOR CLL List, go it by hashing out ideas with other patients in places like CLL Forum.

Sometimes I think I have spent too much time online, reading all those things, connecting with patients, learning from experts. Then, this year, when push came to shove, I found that I knew some things that had a profound and important impact on the quality of my medical care and therefore on my life. So stay online and learn, humbled though you will always be by the vastness of what you still don’t know.

Patient, you must be ever vigilant. You will never know all the answers but you must learn to ask the right questions at the right time.

Knowledge is power, wisdom is the proper application of that power. That is what to strive for.

Now, I need to go back to sleep.

I’m doing chemo now, Part 1: How the need rather suddenly came upon me

I am now undergoing R+CVP therapy to treat both my AIHA and CLL. I’ll explain that therapy choice in another installment, but for now, first things first. This is the story of how things turned from good to bad almost overnight; about how patients should sometimes trust their instincts more than their doctors; and about how there are dedicated, caring doctors out there who can help at pivotal times.

I once had a gun put to my head during a robbery. The assailant didn’t shoot, or you wouldn’t be reading about my struggle with chronic lymphocytic leukemia. But he easily could have, and I would rather risk a gun to the head again than have to deal with autoimmune hemolytic anemia (AIHA), which is a byproduct of my CLL. That tells you how much I hate it, and here is why:

The morning of October 4 dawned like any other in central Arizona; bright, warm, endless blue sky, freeways filled with drivers gabbing on cell phones and oblivious to the speed limit. I was in Scottsdale to see Dr. O’Leary, whom I had been seeing since May, after my previous doctor, Dr. Belle, was dismissed from the very same practice due to some sort of rabid doctor-on-doctor office politics.

Dr. Belle had been promising all summer to go into practice again and I expected to return to her when she did. But as time dragged on, I had gotten used to O’Leary. With his thick glasses, checkered shirts, and dyed hair, he reminded me of my high school chemistry teacher: nerdy, a bit set in his ways but not dogmatic, working at the same place a long, long time. Seen it all, done it all, had developed a pleasant persona for dealing with patients. He was one of the original partners, in practice since the 1980s, now comfortably lumbering on until retirement. He had even been voted one of the top doctors in a Phoenix Magazine poll, which is where friends get friends to vote to give each other more business. As I learned from my one-time visit with Dr. Lord, and was to find out with O’Leary, any poll of top doctors is useless. Readers, do not be fooled! You are better off picking a name out of the phone book!

A little background

Dr. Belle had managed my AIHA after it was diagnosed in March, and O’Leary took over after she left. He was there for my relapse in July, and he was there but not there for my relapse in October, which is what this post is about.

Those with a taste for my full chronological history can read these posts. But here is the brief review: My March AIHA responded overnight to high-dose steroids, which is the standard first-line treatment. I was also receiving low-dose Rituxan, which went on for 12 weeks, well after the steroids were tapered off. As it turned out, the low-dose Rituxan acted as a substitute for the steroid, extending my AIHA remission. I got some IVIg at the end for good measure and was sent out into the world in June, red counts pretty much normalized but still Coombs positive. I relapsed three weeks later.

I suspected I was relapsing because I noticed on a Tuesday that my urine was starting to turn a darker color -- an orange-red, which is the byproduct of the dead husks if red blood cells being passed through the kidneys. By Friday I was in O’Leary’s office, a CBC confirmed my suspicions, and I was back on high-dose steroids. Again, they worked like a charm. Overnight my urine turned yellow. As I began to recover, O’Leary threw in four once-weekly doses of standard-strength Rituxan, which is a common procedure with AIHA. I was continued on the steroids and he began to taper them down. My red counts achieved a certain stability, though the hemoglobin (HGB) remained just shy of normal and I remained Coombs positive, though less so than at relapse.

The doctor’s plan

When the morning of October 4 came around, things were looking pretty good. In early September I had been stepped down from 8 mg of methylprednisolone daily to 4 mg. I was a bit nervous about this, going to the lowest dose, but my office visit CBC actually showed a very mild improvement in the reds, so my mind was put at ease somewhat.

Dr. O’Leary seemed pleased as well -- so much so that he felt it was time to step down even further, which came as a bit of a surprise to me. He wanted me to start taking my 4 mg pill every other day, as opposed to every day. “This will give your body a chance to recover, get used to not having the steroids,” he said.

“Do you think this is a bit too soon?,” I asked.

“Well, we have to do it sometime,” he said, “and you seem to be responding well.”

This sounded logical enough to me, though I had an intuitive feeling we were potentially starting to skate on some thin ice. But there was no harm, I figured, in following the doctor’s orders and giving it a try. We agreed to meet again in a month. Marilyn and I left his office, had lunch at a Vietnamese restaurant, and figured we’d get on with our lives as we had before.

Code orange

And so, that very day, I took no steroid. And lo, by the next day my urine was suspiciously orange. And I told myself: “No, this couldn’t be happening.” But over the weekend there was a definite urinary color trend. I knew I was hemolyzing again.

I called the doctor’s office on Monday the 8th and reported to the nurse: My urine is turning orange-red, which probably means I am hemolyzing because that is what this symptom has meant in the past. And can I have a CBC order faxed to my local lab so that we can just verify whether I am right or wrong?

“I’ll talk to the doctor,” she said. O’Leary, like others in his practice, is not big on giving out his e-mail address or cell phone number to patients. One must traverse a wall of tone-deaf and largely incompetent nurse meat to pose a question. (And, by the way, this is a long-established, well-known practice in a wealthy community, so they have had ample time and money to get organized.)

That afternoon the nurse called back: “The doctor does not think it is steroid-related. He suggests you have your primary care doctor do a urinalysis.”

I was a bit in shock. “And the CBC?” I asked.

No need, I was told.

When Marilyn came in to ask how the call went, I said, “I’ve been dissed.”

After my anger and disappointment had worn off a bit, I contacted the physician’s assistant at my primary care doctor’s office. Both the PA and the doc are good, solid professionals. The PA agreed to the urinalysis and also to a CBC at my request and faxed the order to the local lab.

I went in for the tests. As I expected, the urinalysis showed no infection. It did not, however, call for a count of red blood cells in the urine. I have since learned that there are urinalyses and then there are urinalyses.

But the most important thing was the CBC: It was showing a drop in the reds, not dramatic but enough to prove my point: Oct. 4 HGB was 12.4; by October 8 it was 11.9. Hematocrit went from 37.7 to 33.8. Overall red blood count dropped from 3.69 to 3.29. Yes, these results came from different labs, but the trend was unmistakable.

On Tuesday I called O’Leary’s nurse again. I told her the numbers, which I had gotten via telephone from the PA. I asked if I should up the steroid. She said she would talk to the doctor after she received a fax of the CBC.

“Can’t you just relay the numbers to him in the interim?” I asked.

Oh, you mean as in trusting that the patient has a brain larger than that of a banana slug and can actually write down numbers on a piece of paper with accuracy?

“No, he’ll want the full report.” And I had no doubt she was being honest, as O’Leary is nothing if not a little anal about having everything done in what he sees as the proper fashion.

And so this took time, the getting the one end to fax the other, the getting the fax to arrive, the wondering where the fax went and the refaxing, all of which went into Wednesday.

At which point I finally spoke to the nurse again: O’Leary will squeeze me in on Friday. Don’t change the steroid.

Well, I had already started to cheat, adding a little more methylprednisolone here and there on the “on” days. I wanted to slow any hemolysis. There was no point in letting it get further out of control.

Friday, bloodless Friday

Marilyn and I arrived late at O’Leary’s, having driven two hours from Sedona and being delayed further by a traffic accident on the main freeway into Phoenix, no doubt caused by someone going 85 miles an hour with one hand on the wheel while gabbing into their cell phone about Dancing with the Stars.

The CBC was a shocker: HGB down to 9.3, as bad as in my July relapse. Hematocrit 28.8. Overall RBC 2.68. The drop had accelerated sharply since Monday, despite my cheating on steroids. Anyone with that bigger-than-banana slug brain could see the steroids were failing me.

When I saw O’Leary I basically told him I told you so, as nicely as I could, given that I was still working with him. There is a certain inertia in working with a doctor, and until this past week he had seemed to be on top of things and at least acceptably attentive.

Could I forgive him, could I accept the role that human error plays, could I be comfortable knowing that his lapse in judgment might have been only that? I had already forgiven him for trying to step my steroids down, which had backfired. It was not an illogical step. What worried me was his failure to take me seriously during this past week.

I was prepared to see what he said, but I now had an ace in the hole: I just learned that Dr. Belle was finally back in practice.

Sadly, O’Leary appeared clueless. Months before I had given him the Mayo Clinic’s new paper by Drs. Clive Zent and Wei Ding discussing the treatment of autoimmune disorders in CLL. O’Leary had seemed impressed that I had managed to snag so recent a document off the internet (I told him about CLL Topics, which had alerted the patient community to it, and he promised to check Topics out one day, which he finally did, and reported back that he was “very impressed.”) We had even touched on some of the options mentioned in the paper in our conversations over the months, including Rituxan, cyclosporin, IVIg, and R+CVP, as well as other ideas like Kanti Rai’s R+CD and even FCR.

So at some point, when he was most lucid, O’Leary was aware of the options; but I think he was not used to seeing patients with AIHA as bad as mine, and was wedded to what had worked on the last patient, and maybe the one before that.

At any rate, O’Leary’s response to my CBC was astonishingly underwhelming.

“I don’t think I need to put you on the highest dose (72 mg) of steroids again,” he said. He wanted me to go back on just 8 mg daily. I was floored. Going back on high-dose steroids would be standard procedure as a stopgap, followed by something else ASAP.

And so, the visit began to take on the aura of the car wreck I had seen that morning. I was watching an accident happen. I did not trust him to address the immediate crisis or the long-term problem. This was the end of our relationship, and as he prattled on about something the plan became clear in the back of my mind: Get out of his office and take things into my own hands.

I got him to agree to double the 8 mg to 16 and got a prescription for a horse-choking supply of methylprednisolone. I put myself back on the 72 mg that had worked so well in the past, and I called Dr. Belle’s new office on Monday, scheduling an appointment for that Thursday. I expected that the high dose steroids would arrest the hemolysis, or at least slow it dramatically, and that Dr. Belle and I would figure out a more effective treatment for what clearly was and is a worse than average case of AIHA.

Saved by the Belle

I read an article recently on Time magazine’s website. It’s called Q: What Scares Doctors? A: Being the Patient. In one section, it discusses a study that shows that you are probably better off with a younger doctor, no more than ten years out of residency, than a doctor with more experience (my apologies here to the many older doctors who are indeed on the top of their game and whose expertise is invaluable to us all):

“But younger physicians may have other advantages – like a fresher sense of the latest standards of care. Many doctors have concluded that there is something of a sweet spot on the age-education-experience continuum. They seek out clinicians who are no more than 10 years out of residency, old enough to have some mileage, young enough to be up to speed. There is actually some hard data for this rule. A review published last year in the Annals of Internal Medicine examined the connection between a doctor's years in practice and the quality of care he or she provided. To the surprise of everyone – including the review's author, Harvard Medical School's Dr. Niteesh Choudhry – more than half the studies found decreasing performance with increasing years in practice for all outcomes assessed; only 4% found increasing performance with increasing age for some or all outcomes. One study found that for heart-attack patients, mortality increased 0.5% for every year the physician had been out of medical school.”

That quote could have been describing the difference between Deadwood O’Leary, as I have taken to calling him now, and Dr. Belle. Dr. Belle is young but a little bit seasoned. Besides having an excellent bedside manner, and especially an ability to treat patients honestly and directly as adults, she is interested in keeping up on the latest clinical trials and learning what she does not know. She seems excited about her work and gives her e-mail address and cell phone number to patients.

While starting out with no more knowledge of CLL and its complications that the average hem/onc, she has picked up some information through her experience with treating more than one patient. She knows I am pretty well informed about CLL and the choices I face, and we can have a free give-and-take conversation about it without any of the barriers that usually get in the way between doctor and patient. I should add here that, for all I know about CLL, I also know that my doctor has some experience and knowledge that I will never have. I cannot fix myself, nor would I want to try it alone. It is a partnership.

When we arrived at Dr. Belle’s new office on Thursday, it was a world apart from O’Leary’s. The colors were sunnier, the staff were universally pleasant, the vibe was “welcome,” not “sit there and wait for somebody to call you.”

When the doors to the back did open, we were happily surprised to see Dr. Belle’s nurse from the old practice, who left in solidarity when Dr. Belle was booted out. And then we saw Dr. Belle herself, who seemed much more at ease than she had been before. It was like a reunion of old friends, and then we got down to the business of my AIHA.

The practice being new, there was no machine on the premises to run a CBC; that would be done afterward, at a nearby hospital. In the meantime, Dr. Belle confirmed by physical exam that my liver was enlarged, the result of hemolysis, which could also be seen in the yellow cast of the whites of my eyes. I had no idea what my hemoglobin was at the moment but I knew I was feeling the effects of being anemic. While I had not thought the 72 mg would work a miracle as in the past, my urine had seemed more clear at times during the six days since I left O’Leary’s office. I figured my hemoglobin was perhaps stable, or had only dropped slightly since the 9.3 measurement at O’Leary’s.

We began to talk about treatment options; it was clear to both of us that steroids were failing me, that my AIHA was severe, and that we needed to treat the underlying CLL as well as the AIHA. Ideas were thrown out: use cyclosporin to stablize the situation and then follow with FCR, which had been recommended to me in correspondence by someone whose opinions I greatly respect. Consider R+CVP, which Mayo’s Zent wrote approvingly of. Consider Kanti Rai’s R+CD, which is essentially R+CVP without the V, or vincristine. In the end, we set an appointment for Monday for “chemo of an unknown kind.” We would each look into some of the questions about safety and efficacy that we had and would put our heads together over the weekend. Meanwhile, we’d see what the blood tests said.

A weekend of worse

Much to my surprise, and Marilyn’s -- and I want say here that we patients owe our caregivers the world, especially in such times -- my HGB that evening was down to 7.0. Hematocrit 20.4. RBC 1.67. The high-dose steroids had not been working nearly as well as I had hoped.

A hemoglobin of 7.0 is the line in the sand for transfusions for many doctors, including Dr. Belle. Below it, you get blood. At or above, you get left alone. We spoke to Dr. Belle by phone about the results. She offered the choice of doing chemo in the hospital immediately -- which would require an immediate choice of therapy -- but said she felt more comfortable doing it in the office on Monday. One reason is that stays in the hospital are to be avoided; the potential for a person who is already immune-compromised to pick up an infection is not to be discounted. We opted for Monday, and we agreed to do CBCs daily over the weekend to keep track of my hemoglobin.

Friday’s CBC from the lab here in Sedona showed a HGB of 7.8, which came as a pleasant surprise. I wondered if the steroids had finally begun to work their magic -- perhaps the 7.0 was my nadir and I was now starting to work my way back up.

Saturday’s CBC, at the lab in our regional hospital, disabused me of that notion: My HGB was 6.7.

I spoke to Dr. Belle by phone and she said she had suspected that the 7.8 had been an anomaly. She suggested I go on over to the ER, check in, and get two units of blood. Marilyn wheeled me there -- I was at the point of needing a wheelchair to navigate the long hospital corridors without getting unacceptably winded. I was given a fast pass to my own private room and an IV line was inserted into my left hand in preparation for the transfusion. In came the portable EKG machine -- result: normal. (This is important, as the heart is put under great stress trying to pump oxygen via a diminishing cadre of red blood cells.) In came the chest X-ray machine -- result: clear. And in came the doctor, who I’ll call Jim.

Jim is another one of those young doctors with enough experience to have navigated a pitfall or two, as well as the enthusiasm to care about each case. He looked me over, asked a number of questions -- Was I short of breath? Did I have blood in my stool? -- and concluded that I was asymptomatic, that my body had adjusted well to the gradual loss of red blood.

“If you were in an accident and had lost that amount of blood quickly, you’d be dead,” he said.

We talked a bit about my condition, including my expectation that in the longer term I would need a transplant to save me from CLL, and then I asked the million-dollar question: Is the blood irradiated?

Irradiated blood is recommended for immune-compromised patients. While it does not entirely reduce the danger of picking up a virus or something else that can put you in harm’s way, it is safer than plain old street blood. It would not be to my advantage to pick up CMV, let’s say, as I entered chemotherapy that was going to suppress my immune system even more than the steroids already had. Or to let slip into my bloodstream some other nasty that might rear its ugly head now or during a transplant.

The answer to my blood question was “no,” and Jim checked to see if it could be irradiated, and the answer was still “no”. Marilyn and I knew instantly that there would be no transfusion there that day. Meanwhile, a new blood test came back showing my HGB up a tenth, to 6.8.

Dr. Jim confided off the record that he didn’t think I really needed the transfusion given my asymptomatic nature and the dangers of picking up something in the blood -- or in the hospital -- that might cause me harm.

“Personally, I’d let it bleed down to about 4,” he said. This seemed a little low to me, but the message I was getting was this: In my practical experience you are doing OK, you can make it to Monday, better to play it safe by not taking on any additional risks. This dovetailed with our thinking. The nurse, who had overheard it all, also told us confidentially that we were making the right choice.

Jim spoke to Dr. Belle, who understood our concern. And so I was unhooked from the IV line and sent home, facing a $300 co-pay for an emergency room visit that wasn’t what I expected, but which was fruitful nonetheless.

I spoke to Dr. Belle. She said patients are routinely given chemo with HGB in the 6 range, so lack of a transfusion would not endanger the start of treatment.

It was Saturday at 4 p.m.. Treatment would start on Monday at 9 a.m. The only hitch: figuring out what it was to be.

In Part 2, I’ll explain why we chose R+CVP.

HOW I'M DOING - updated Nov. 5

For those interested in a health update, I have had one round of chemo and it appears to be doing the trick with minimal side effects. Today is Nov. 5 and the hemolysis has ended and the red counts are going in the right direction -- today's CBC shows hemoglobin is up to 10 two weeks after therapy, rising from 7.9 in the last five days alone. An added plus, of course, is that we are treating the CLL. My lymphocyte count has dropped from 180k to 50k and stubborn lymph nodes that were once 3 cm are now the size of peas. Next round of chemo is scheduled for Nov. 12.

And yes, UC Santa Cruz is my alma mater. This is where I learned to write down numbers on a piece of paper, which was quite a feat given the distraction caused by the redwoods (which is where all those yellow banana slugs can be found), the Pacific Ocean, and the other joys of college life, including meeting a certain Marilyn.