Eleven

Optimism does not come easily to me. Maybe it’s my Scandinavian roots. Maybe it’s growing up in the gray and frozen North. Or maybe it’s thirty years of the cynicism and sarcasm of news. More probably, it is just because it is. I think people are hard wired to be the way they are. Some are happy and forward-looking. Some are self-confident and self-assured. Some are ambitious. Some are sure of what they want. Some are not.

Maybe that’s why I listen carefully, not only to what my doctor says, but how he says it. When he tells me the results of my tests are really good news, my first reaction is to wonder what he’s not telling me. Even so, I tend to hear what I want to hear at times like that. We walked away from my last appointment believing everything was looking up. The biopsy results couldn’t find any CLL cells. Only later did his words turn over and over in my head. I strained to remember and wondered if I asked the right questions, or if I would have gotten the full answer even if I had.

Because it’s not a curable disease, I’m sure it’s going to return. I think that when it does there will be advances in treatment that will push it back again, and maybe push it back forever. But I’m not expecting that. I’m expecting to have to deal with this for the rest of my life, and I’m not expecting the rest of my life to be long enough. That outlook comes partially from my lack of optimism and largely from being the only surviving member of my family. My mother lived to be nearly 90, and there’s longevity on her side of the family. I had an aunt on my dad’s side who lived well into her 80’s, and she had CLL. But, there’s not a long history of a long history among the Swansons.

I don’t go back to the clinic until January, and that’s just a follow up visit. But here’s a really peculiar thing: I miss it. All this year, my schedule has been filled with appointments, blood tests, chemotherapy, biopsies and clinic visits. It’s how I marked time, how I filled my calendar. Two weeks until my next chemo; blood test on Monday morning; CT scan in a month. It was also the way I knew how I felt. Watching my white blood cell and platelet counts go up and down told me if I was “normal” or not. For most of the year, I was not. Even after it was all over, my white count was low. And it will be January before I have another set of numbers to look at. I can assume the marrow has recovered from the beating the chemotherapy gave it and is doing what it is supposed to do. A normal person would do that. An optimistic, self-confident, forward-looking person.

If the numbers are good, I’ll be relieved, once again. If they are not, I’ll listen to how he explains that to be the case and I’ll take away from it what I want to hear. It will be something like “sometimes it takes several months.” It’s been several months, I’ll say. Then he’ll launch into a story about a patient somewhere who took even longer than this. I’ll be expected to take solace in that.
And I will, because I want everything to be all right. I’m just not so sure it will be. Because that’s the way I am.

Ten

I don't know that dreams can come true. First of all, I can't remember them. And secondly, they don't make any sense. I wake up thinking "that was interesting" until I think about it. People who don't know each other are together in places they've never been, walking down hallways that don't lead to anywhere. And then I lose track of what it's about.

So I'm not big on hoping dreams will come true.

But then we walked down the hallway into the exam room at the cancer center. The physician's assistant who did my bone marrow biopsy came in and handed us a copy of the results. "Flow cytometry shows no evidence for a clonal B-lymphocyte population." Interpretation -- the leukemia is gone.

The report is two pages of incomprehensible medical jibberish that boil down to my bone marrow functioning properly and producing white cells, red cells and platelets the way it's supposed to. Not enough of them yet, but it's coming around.

It doesn't make for great reading -- there's no plot and you can't really even say there's a beginning, a middle and an end. But I've read it word for word several times, and I'll admit it brings a tear to my eye.

My doctor came in, said "you done good" and gave me a hug. All I had done was sit in a lounge chair with an IV needle in my hand, but I have new respect for the bulging veins on the back of my hand.

A lot of worry melted away when we left the clinic that day.

The next night, I took a cellphone picture of the label of a bottle of 30 year old Glenfiddich, added "test results are in" to the caption and sent it to my brother-in-law. He texted back "I'll be right over." We each had a glass and toasted my blood cells, literally and figuratively. That bottle had been tucked away for a couple of years, and while it tasted like the really good scotch that it is, the reason was better than the booze.

My next appointment is three months away. It's a little odd not having a blood test or a clinic appointment or a chemotherapy treatment looming on the horizon. I won't say I looked forward to them, but I marked time that way -- two weeks until I go back in for chemo, blood test Tuesday and so on. The year's gone by quickly. Fortunately, it's gone in our favor.
Back there in the recesses of my head is the knowledge that it's not considered a cure -- though there are people who have had the same treatment I had and have no sign of CLL after nearly five years. So, it could be a cure.

And they're working on a lot of things that hold the promise of being even better treatments, and a vaccine is in the works. Things that will be available some day -- in case I'm not "cured" and need to fight it off again.

In the meantime, it's everything we could have hoped for -- like a dream come true.

Nine

It's the question I hate most.

"How are you?"

Not the passing-in-the-hallway "Hi, how are you." That one's easy. "Fine, you?" is the answer, spoken without breaking stride.

But when someone who really wants to know looks me in the eye and sincerely asks "how are you?" I get a hollow feeling in my stomach. The honest answer is "I haven't any idea." I feel fine, but I have felt fine since long before I was diagnosed with leukemia. If they hadn't told me I have a life-shortening disease I wouldn't know about it yet.

Every time I see the doctor he asks how I've been feeling and I tell him I'm fine and have none of the list of symptoms he ticks through as he questions me. "I'm a pretty boring patient," I tell him. "Boring is good, I like boring," he tells me. It's the conversation we have at every appointment. I'm planning to put it on tape.

My latest appointment was for a bone marrow biopsy. It's a charming procedure where I lie on my stomach while they stick large needles into my hip. My doctor's physician's assistant performed the test. She came in and, along with asking my name and birthdate to be sure I am who they think I am, she asked if she had ever done a bone marrow biopsy on me before. That's when I started to dislike her.

"Yes, twice before," I informed her. I don't think I ought to be the most important patient she sees, and I don't think she ought to remember everything she's ever done for every patient. But I do think she ought to take a couple minutes to look at the file and refresh her memory about me. It's a big deal to me and I'd like to think I'm not just another bare butt to her.

That wasn't the only reason I was unhappy to see the physician's assistant. I had questions for my doctor, and he wasn't there to ask. Plus, while she doesn't recall, I remember vividly the last time she did my bone marrow biopsy. It almost killed her. She pushed and struggled and twisted and stopped and started three times before she was able to get the metal swizzle stick syringe into my hip. Then she drew out some of the core of the marrow and declared mission accomplished. She was dripping with sweat and happy to have it over with. I was the one with the sore hip.

When the results came in, she hadn't secured enough core to get a decent sample to test. She shrugged, looked sheepish and said "I really tried."

I would have thought she'd remember that. But when I told her the last biopsy had been aerobic for her, she gave no indication she recalled and said she hoped the stars were aligned better this time.

It did go more easily. She got the first, smaller needle in and drew out the liquid portion. As it is drawn out, I can feel it pulling all the way down my leg. It gives a whole new meaning to deep tissue massage. When it was time to get the core, she took two stabs at it -- literally -- and then announced she got it done.

Next week, I'll see my doctor and get the results. That's when we'll find out if the physician's assistant did it right. More than that, we'll find out if there's still CLL coursing through my veins, and I will have an answer to that question I hate.

Eight

(August 2008) The little plastic pill bottle sits on the desk—staring at me below the computer monitor—to remind me of two things: to take the anti-nausea pill at noon and then to go to the clinic at three for a Neulasta shot.

I stopped at the lab yesterday for a blood test and the results were less than stellar. As a result, they prescribed another shot to boost my flagging immune system. This shot has made me sick before, so I take the anti-nausea medication just in case. And, it’s a safe bet I’ll wake up stiff and sore. Neulasta makes me ache all over.

Not that I’m not inclined to be stiff and sore any way. I’ve never been a model of flexibility. I’ve tried stretching and taken yoga classes. Some people walk out of those classes feeling refreshed and invigorated. I limp out convinced that yoga is the Hindi word for torture.

People with CLL talk to each other in numbers. White blood cell counts, platelets, hemoglobin, red cells are all measured against the norm. I try to avoid such talk because it doesn’t really describe anything. It’s as though someone asks how you’re feeling and you answer “4.2.” But since I have no outward physical symptoms, the numbers are the only measure of how I’m doing. My white count, which is supposed to be building back up since I finished chemotherapy, has actually gone down further. The platelets are coming around slowly and my hemoglobin is still in the anemic range. Such is the fascinating world in which I live.

I’m not going to pretend it doesn’t bother me. I’ve pretended that before and it doesn’t last. I went through six months of chemotherapy and expected that I would be healthier than when I started. I still expect that when the tests are complete in September that I will be healthier. But these flagging blood test numbers worry me.
My doctor and his nurse tell me not to worry. It’s an exception to the “every case is different” assurance. I’m told they’ve seen a low white count in other patients in this clinical trial.

Still, doubts linger. In my case, the leukemia is traced to a single chromosome that went haywire. It’s supposedly responds well to treatment. And I’m hanging on to that hope.

On the other hand, the disease progressed rapidly in my case. That’s not good.

And then there was the chemotherapy itself. After three cycles, my white count was low enough that they cut the dosage of the fludarabine and cyclophosphamide. I continued to get the full dosage of Humax, the antibody. And by the sixth cycle, my platelet count was low enough that they cut out they fludarabine and cyclophosphamide altogether.

The CLL was virtually gone by the time I’d gone through three cycles and the doctor keeps saying he’s anticipating a complete response. But there is still a lot of room for uncertainty.

And if the bone marrow biopsy results come back October first and are not as good as I’m hoping, then what?

That’s the question I don’t even ask.

Seven

(August 2008) CLL is all about waiting. Since they don’t treat the disease until you either have symptoms or your blood lab results are bad, you’re in a period everyone refers to as “watch and wait.” Some people watch and wait for years. Not me. I started my chemotherapy one year after my diagnosis. Seemed long enough.

I made a conscious effort to be in good spirits when I went for chemotherapy. If I walked with a little spring in my step it would be clear that I was healthy and getting healthier. When they called my name, the assistant who escorted me to the infusion center would always say hello and ask how I was feeling. “I’m fine,” I’d say. “I can’t imagine why I’m even here.”

Chemotherapy infusion centers are not as dreary and dismal as you might envision them to be. There are some women with scarves on their heads and men with hollow eyes and skinny arms. But many of the patients don’t look any different than anyone else. And the conversation is pretty amazingly supportive.

Sitting in the waiting room, patients would greet each other as though they were long lost friends. Some weren’t feeling all that well, while many others felt fine, like me. But there was a common bond in what we were going through and, I think, a sort of resolve that we were going to come out on the other end of the treatments better than we went in.

Every nurse I had was great. In sixteen treatments, I only had the same nurse twice. There were times when they couldn’t find a vein and had to ask someone else to poke around for one, but that’s not a reflection on their ability. Some days, veins are just more stubborn than other days.

I’m not saying it’s the sort of place I’d like to go if I didn’t have to, but it’s not particularly hospital-like. There were volunteers walking around asking if you wanted more coffee or juice or if they could get anything for you. They had been through chemotherapy and other cancer treatments and were cured, and they came back to be with others. Wonderful people, those volunteers.

I didn’t find chemotherapy all that unpleasant. People would tell me they were sorry I had to go through it, or were happy for me once it was over. But to me, it was a four day work week, and two of those four were just half days. I read books, watched TV, kept up with my office e-mail, got waited on hand and foot (mostly hand, since that’s where they put the IV) and read a lot online. If only there had been a putting green.

So in the middle of June it all came to an end. For all I’ve said about how little it bothered me, I walked out of there pretty happy. My nurse told me to come back to visit and I said “thanks, but as nice as you’ve been to me, my plan is never to see you again in my life.”

My blood test results are coming around, but more slowly than I hoped. According to the treatment plan, I wasn’t supposed to have to come in for blood tests for three months. But with my white count still hovering near bubble boy, they wanted me to come back every couple weeks. My platelets had gone up and then dropped down again. No one seems to be particularly concerned about any of this, and they play down the significance of it, but if there’s really no problem, why am I going in for extra blood tests?

We won’t really know how well the chemotherapy worked until the first of October. I have another bone marrow biopsy in the middle of September and then get the results two weeks later. I’m not expecting good results. I’m expecting great results.

In April of 2007 I had a bone marrow biopsy that showed 79 percent—four out of five—of my white cells were leukemia cells. A year later, after three cycles of chemotherapy, the biopsy results came back with .04 percent—four out of ten thousand—of my white cells were leukemia cells. My doctor looked at that and said all we needed to do with cycles four, five and six was “mop up.” Less than one cell in ten thousand is considered a complete response, and in the closest he comes to a definitive statement my doctor said he is expecting a complete response.

In the meantime, I wait.

Six

(March 2008) Chemotherapy is kicking the hell out of the leukemia cells. The less than great thing is that it's also killing healthy blood cells.

My white blood count is down below normal. That leaves my immune system weak and my doctor keeps telling me to be careful about infections, and to call him right away if I start to feel anything coming on.

I've been taking an antibiotic and an anti-viral since I started chemo and I got a prescription for a "z-pak" antibiotic to put in my shaving kit if we decide to go on a trip.

I quietly move to the other side of the room if someone sneezes. When our granddaughter had a virus I actually asked the doctor if it was okay for me to be around her. (It was).

I am fretting way too much. I don't think about any effects from the leukemia. But every other bump in the road sends me careering toward the curb.

I was out trimming the palm trees and got poked by the barbs of a frond. By that night it was red and puffy. Instead of doing what a normal human being would do and ignore it, I looked at it again in the morning and called my internist. He asked a bunch of questions and finally concluded that I should try to be normal and if it changed, I should go see him.

It did change. It healed.

I took off my t-shirt one day and found some spots of blood on it. A small mole on my chest was bleeding. It was okay the next day but bleeding again the third day. So I made an appointment with my internist. I told him how silly I felt about the whole thing, that I was sure it was nothing, but I wanted to be sure.

He said he'd do the same thing if it were him and looked at the mole. Then he looked at it some more, and got out the bright lights and magnifying lenses before pronouncing that it was a scab, not a mole at all, and if I would leave a band-aid on it for a couple days it should be fine.

So, I'm teetering on the edge of being a hypochondriac. Not that it keeps me from doing anything or going anywhere, but I may get the Howard Hughes Award for hand washing. We eat organic fruits and vegetables. I'm trying to exercise more and do more healthful things.

Who would have thought that in the end, leukemia would make me healthier.

Five

(January 2008) Chemotherapy is not something you generally look forward to going through. From everything I had heard about it, I was anticipating nausea, loss of appetite and various other unpleasantries. Hair loss wasn’t a big worry for me since most of it had left on its own. But here I was, having leukemia but feeling fine and facing a treatment with the assumption the cure would be worse than the disease.

The doctor and nurses were not really much help on the lowering anxiety front. While telling me most patients tolerate it well and relating the anecdote of a surgeon who flies in from Florida, has his chemo and flies home to a full schedule of surgeries, they resorted to their standard answer; “every patient is different.”

Cheryl came with me for the first day of treatment, walking into the waiting room of the infusion center with more than a little trepidation. I much prefer calling it a clinic. Infusion Center sounds so--cancerous. I may be willing to face up to the fact I’ve got leukemia, but can’t they do some things to at least make it seem like just a normal disease once in a while. On the other hand, infusion is their gig.

They called my name and took us into a tiny room with a bed, a chair and a blood pressure gauge. A chemotherapy cubicle. And there we waited. The pharmacy didn’t have my orders, so what was supposed to be an eight hour day doing nothing turned into a twelve hour ordeal doing nothing.

When they finally came in with the IV bag and sank a catheter in my hand, I watched the fluid drip down the tube, into the regulator and followed the first drop through the tube and into the back of my hand. Here we go. Whatever it’s going to do, it’s starting to do it.

Throughout the day, there were lots of blood pressure and temperature checks, blood draws and the occasional new IV bag. Some medicine, some saline solution. We got home about eight o’clock that night. I felt fine—kept wondering if I’d be getting sick but had no problem. The next day I asked if this is what it would be like for the next six months and got the answer I expected, “sometimes people don’t have any reaction to the first treatment or maybe the first couple of them. Some people don’t have any reaction at all. But every patient is …” Yeah, yeah, I got it.

The second and third days went smoothly, and I was done in about four hours each day. I was in the lounge chairs on those days, doing crossword puzzles and reading most of the time. I left, called Cheryl and went in to work for the rest of the day. On the fourth day, I just dropped by to get a shot of Neulasta which is supposed to boost my immune system by convincing my bone marrow to kick in and make new healthy cells. About three the next morning, I woke up throwing up. By noon the next day I was okay, though because I didn’t dare eat anything until evening, I didn’t know I was okay.

And that was it. I went back every Monday for a blood test. Two weeks after the chemo, my lab results were e-mailed and I walked over to Cheryl’s office right away. My white cell count was 117 when I started treatments. Now, two weeks after the first cycle, it was down to 9. That’s in the normal range. I was almost in tears.

Chemotherapy is scheduled every four weeks for six months, and already my white cells are coming up normal, and I’m none the worse for the wear. I’m thinking chemotherapy is getting a bad rap.

Four

(December 2007) Benjamin Franklin was wrong.“In this world, nothing is certain but death and taxes.” There’s nothing certain about death. I can prove this. Ask a doctor to tell you when you are going to die. You can even let the doctor off the hook. Say you want to know not when, but whether you are going to die.

What you’ll get is a lot of hemming and hawing. I was told I have leukemia. The Internet ventured the opinion that my life expectancy would be about seven years. I saw this as an invitation to quit the job, tee up a Titleist and never look back. But, I thought maybe I should get an opinion from someone who had actually met me.

So I asked my doctor, one of the foremost CLL researchers in the world.

“Every case is different,” I was told.

“Yeah, but.”

“There’s really no way to know. We’re seeing very good results with new treatment protocols. We have patients now who could go to any doctor in the world and they wouldn’t find a single indication they have CLL.”

“Am I likely to be one of those patients?”

“Every case is different.”

Maybe so, but if you’ve had three patients you have an average. So what’s the truth? The truth is that so far uncertainty is the worst thing about having chronic lymphocytic leukemia. And like the cancer itself, the uncertainty pervades everything.

First there’s the big question. We’ve already got the no-answer answer to the direct question, so I approached the subject from a different direction. “What do you think of 401(k) accounts for a guy like me?” No luck.

It’s a curious thing really. None of us knows what’s going to happen—how long we’re going to live, whether we’ll be happy or successful or happy and successful. Yet as soon as someone says “you have cancer” you expect answers. There just aren’t any. At least not in my case there aren’t. Every case is different.

Then you realize the uncertainty just begins with the diagnosis. When I reached Stage IV and it came time to talk about treatments, there were several options. Each was explained in somewhat rapid fire polysyllabic detail. And then, for a change I was asked a question. “Which one do you want?” I was, well, uncertain.

We went home to read through all the paperwork, the protocols, the clinical trial release forms, the patients’ bill of rights and on and on. The potential side effects of each option ranged from hangnails to death. We concluded we couldn’t know. So I wrote an e-mail to the doctor. “I’ve produced TV news programs most of my life,” I wrote. “That gives me the ability to do a lot of things simultaneously—write short declarative sentences, drink copious amounts of coffee, count backwards from sixty—but it doesn’t prepare me to make decisions on cancer treatments. So, let’s do this. You sit in the chair over here and I’ll sit on your funny little stool with chrome legs and wheels, and you tell me what you would do.”

He called and told me what to do. Now we were getting somewhere. He also told me why.

I felt a lot better.

I signed up for a clinical trial – FCR my doctor called it, partially because he has an acronym for almost everything and partially because FCR is a hell of a lot easier than having to say Fludarabine, Cyclophosphamide, Rituximab several times in the same conversation.

Essentially, it’s two traditional chemotherapy drugs and a human antibody. The trial dealt with the dosage of the antibody. By luck of the draw, I got the 1000 mg dosage, not the 500 mgs. Is 1000 better? That’s what they’re trying to find out. Right now they’re—let’s all say it together--uncertain.

I guess there’s no real point to wanting all these answers. It wouldn’t change anything if I knew in advance that I was going to get sick. There’s nothing I can do about it, so I’d still get sick. I didn’t do anything to bring this on, and other than try to stay generally healthy, there’s nothing I can do about it.

And as much as I thought I wanted to know how much time I have, the truth is, I don’t want to know. What good would it do, really? It might become a self-fulfilling prophecy. Get out the calendar and mark the days. When the calendar runs out, so do you. That’s no way to live. That’s not even a good way to die. Living is about living, it shouldn’t be about waiting to die.

The lesson is to take it as it comes and keep looking forward, expecting to live. It’s what we do. It shouldn’t be any different for those who seem to have something standing in the way. Go until you can’t go any more, without expecting to ever have to stop.

I’m certain of that.

Three

(June 1007) It takes a slightly skewed view of the world, but if you’re of a mind to, you can take advantage of cancer now and then.

Take, for instance, the golf course. One Saturday with my regular foursome we were playing our regular game. I will admit I seldom win, so golf is somewhat more expensive for me than for the other three. But, the one who wins the most money also buys the drinks, so it starts to even out if you drink enough.

I have been coming up on the short end of that deal too lately. One of the warnings on my chemotherapy drugs advised against drinking alcohol during treatment. I asked if that meant during the week of the chemotherapy, during the weeks around treatment, the whole six months of treatment, or if it meant what I wanted it to mean – no alcohol during treatment at the clinic. But they said it meant what I figured it meant – during treatment. For someone who had a couple of double martinis every night, that was just another challenging setback of this disease.

Anyway, about golf. We were on the twelfth hole, and five skins had piled up, so there was a little extra interest in every shot. One of the guys—who’s not known for fast play in the first place—was taking a particularly long time lining up his putt. He walked around it on all sides, crouching, squinting, plumb-bobbing from every angle. The rest of us stood by watching as amusement turned to frustration. Finally, he addressed the ball and then moved away, apparently hearing a leaf fall somewhere in another galaxy.

I’d had enough. “Look,” I said, “maybe you have all the time in the world, but I have cancer. There are a few other things I’d like to do with the time I have left.” He missed the putt. I bought the drinks.

Twisted or not, a sense of humor is important now. We ran into a friend the other day who said cheerily “you’re looking good.” I instinctively said “I’ve always been good looking.”

“But, really,” he stammered “how are you feeling?”

“I’m fine,” I said. “Haven’t been sick a day. I never get sick. Terminal, not sick.”

You do have to be a little careful who you say those sorts of things to. I said something like that to someone one day and her lower lip started to quiver. And a couple people have gotten angry. They’re trying to be nice and I’m making fun of them. But, hey, I’m the one who has to cope with leukemia. F*#k them if they can’t take a joke.

I’m not afraid to say I have cancer. It’s an ugly word that stops people in their tracks. And I’m not saying I took the news with a nod and a wink. But now that it’s here, I admit it. I use the word.

Even my doctor is inclined to say “CLL” instead of leukemia and I’ve never heard him say cancer. But I think you have to face reality. Whether I want to or not, I wake up every morning and at some point—usually when I’m taking my pills—I look at myself and think, “I have cancer.”

So face facts. I think I’ve always been like that. To me, people don’t “pass away,” and they aren’t “gone.” They die. They’re dead. I didn’t lose my brother, or my parents. I lost my earring. My family died.

You may disagree, but I think it’s helpful to see the world that way. Some may say it’s pessimistic, but I think it’s realism. It’s not easy. As my father used to say, the trouble is that you’re such a long time dead. So, it’s hard to know they are dead, not “lost.” After all, even though it’s not likely, there’s a chance that someday, somewhere, I may find my earring.

I’m not really expecting to die, but my particular brand of leukemia is incurable. So I have to own it. Don’t give in to it, but don’t ignore it either. As they say I have cancer, cancer doesn’t have me.

I’m optimistic about cancer. I’m going to beat it. When my six cycles of chemotherapy are over, all indications are I’ll be in remission. And I won’t have to think about it again for a long time. I probably will, but I won’t have to.

The trouble is remission seems to me to be a little like gardening. You work like crazy to get all the dandelions out of the yard, but one day you walk outside and the dandelions are back. So I’ll think about it. It’s part of me now.

In the meantime, I’m ordering the drinks.

Two

(May 2007) You learn a lot after you are diagnosed with cancer. You learn some about cancer – you learn more than you want to know about the health care system.

Mine is chronic lymphocytic leukemia—“CLL” to those who either want to sound like they are well versed in medicine, or are afraid to say cancer out loud. Some, who don’t have it, call it the “good cancer,” presumably because it is treatable. And while it is treatable, it is not curable, which is another way of saying they can deal with the symptoms, not the disease.

I had never heard of CLL until they told me I had it. Now I hear about it all the time. It’s like when you buy a new car and you choose the color because you’ve never seen a car of that color before. Then as soon as you drive off the lot, you notice that every fifth car is the same color as yours. Ed Bradley from 60 Minutes had CLL. So did talk show host Tom Snyder and San Francisco 49ers’ coach Bill Walsh. They’re all dead. Lucky me.

CLL is usually discovered in a routine blood test. I went in for my annual physical and my primary care doctor called me the next day to say there was something in the results he wanted to double-check, so could I get another blood test, right away. He made an appointment for me with an oncologist, and said “I want you to see him because you may have a type of leukemia. “

The oncologist was singularly unimpressed. “Internists,” he snorted, “they get all excited when they hear leukemia.”

Well, yeah.

He sent me to the lab for blood tests and said he’d get back to me with the results. I don’t claim to know much about medicine, but I do know you can get lab results in about half an hour if you want them badly enough. So it was at least disconcerting when I didn’t hear anything for two and a half weeks. When I did, it was to confirm the diagnosis.

“What does this mean?” I asked.

“It means you come back in four months and we do another blood test. There’s no advantage to treating this until you have symptoms.”

“OK, but what does this mean?”

“It means you come back in four months.”

“Maybe you don’t understand the question – what does this mean?” I’m looking for the big picture here – the live or die answer. Again he says “come back in four months. If you start to have symptoms, give me a call.”

The symptoms are night sweats, fatigue and swollen lymph nodes. I couldn’t find a lymph node if it was lying on the table in front of me. So when I woke up one morning kind of clammy and sweaty, I called the doctor.

“Night sweats,” I said.

“Did you have to change the sheets? Are your pajamas soaked?” he asked.

“No just kind of dampish.”

“Not night sweats. Come back in four months.”

That’s when I fired him.

Sometimes, managed care means you have to manage your own care.

If you have insurance, you probably chose your doctor the same way I did. I entered my ZIP code into an online database that produced a list of doctors and I picked one within easy driving distance. It’s the scientific method at its finest.

I kept going back because I built some rapport, and most important, some trust in the doctor. So when my doctor referred me to an oncologist, I transferred my trust to that doctor. When he turned out to be nonchalant to the point of disinterest and uncommunicative even in my Scandinavians eyes, I knew it was time to get rid of him.

I thought about calling him in, asking him to have a seat and telling him “things just aren’t working out and we feel we have to make a change.” But if I did that I’d have to offer him a severance package and go to Human Resources. Instead, I cancelled my next appointment.

Since he didn’t talk to me, I turned to the only other resource I had. The Internet. That filled my head with questions. After researching carefully I knew a lot of half-truths and answers that don’t fit my questions. But I also found my next oncologist. It turns out the Moores UCSD Cancer Center is one of seven places in the country that does research on CLL. And the doctor who heads the research here is one of the pre-eminent experts in the world.

My primary care doctor didn’t tell me about that. The cancer center isn’t in his “group” so when I told him I wanted to see the world-renowned expert in CLL who was about a mile away he said he’d never heard of him.

So, as much as I didn’t want to, I fired him too. It’s a shame. I liked him, more or less; at least as much as you can like someone who prods you in ways you don’t want to be prodded, and pokes you in places you definitely don’t want to be poked. Now I have to start all over and build that same sort of “rapport” with someone else who is in my oncologist’s health group.

It’s one of the many flaws of our healthcare system that you need to cluster all your healthcare in one medical group, or your insurance will find a way to pay less than they are actually obligated to pay.