Author: Lee Swanson

Six

~ Lee Swanson ~ Leave a comment
(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

~ Lee Swanson ~ 1 Comment

(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

~ Lee Swanson ~ 1 Comment

(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

~ Lee Swanson ~ 1 Comment

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

~ Lee Swanson ~ 1 Comment

(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 Scandinavian 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.

Brothers

~ Lee Swanson ~ Leave a comment

(May 2007) I’ve been looking at a lot of pictures lately: Del as a baby, Del as a toddler, Del at one, at two, at three.

And then, there are two of us in the pictures. Del looking at the baby. Del carrying the baby, Del and me playing in the sandbox, Del pulling me in the wagon. I’m told he was very happy about having a baby brother and that he doted on me. What I remember is that he and the babysitter conspiring to convince me there were wolves in the basement. I was about 21 before I could go down there without turning on every light.

But I also know that Del looked after me and looked out for me. He told me what to expect when I went from sixth grade to junior high. When Del went to college, and high school had time off when he didn’t, he brought me up to UMD his freshman year to spend the time with him. We’d drive up to Duluth in his ’64 Thunderbird and I’d stay in his dorm room with him.

I didn’t give much thought to it at the time, but there probably aren’t a lot of big brothers who would want their little brother hanging around their dorm. Especially since it is part of the Little Brother job description to be a pain in the ass – and I was good at it. But that’s just what he was like, he cared. He cared so much. And he was generous – to me, to everyone.

Del often regretted he got rid of that ’64 Thunderbird. But I don’t think he had a lot of regrets; he wanted to live on a lake, and have a ski boat, and he got that. He didn’t say so in so many words, but I think he loved living on a different lake, in another house with our own ski boat and he wanted that for his girls. He and Pat have two beautiful children that he absolutely adored. (Talk about doting on someone). Family was so important to him. He also regretted that our Dad died without ever knowing his girls. He would have loved them so. And now, Del is denied the joy of grandchildren.

I’m not saying we always got along. We were boys, we were brothers. We fought. And he usually won.

OK, he always won.

As adults, we still didn’t see eye to eye on everything. I like Minneapolis, he liked St. Paul. When I moved to California, he told me he didn’t approve of California. I turned hard to the political left during Vietnam. Del landed somewhere Henry David Thoreau and Jesse Ventura. I don’t really know what his politics were, except that he would get as angry when someone mentioned Bill Clinton as I do when anyone says George Bush. So we didn’t go there much.

We hardly talked about our differences. And sometimes, we hardly talked at all. We might go long stretches without calling each other. And when we did, it might be what would I call a Scandinavian conversation. “How you doing?” “Fine. What’s new with you?” “Same stuff, you know.” “Yeah, me too.” That wasn’t the introduction, that was the whole conversation.

Sentimentality was not our strong suit. I called him one day after the brain tumor had taken control of his life and as we were hanging up, I told him I loved him. “Yeah, you always had that problem,” he said. Never willing to let him have the last word I said, “Well, not always.” And we both laughed.

In another phone call, he said hello and I said “you sound pretty good.” He said “well, I feel pretty good.” I knew Pat was holding the phone to his ear so he could talk to me, and he hadn’t eaten for a couple of days. I let him get away with that.

I probably should have been there in those last several days, and held his hand, but I just couldn’t see him like that. That wasn’t who he was, and I just couldn’t do it.

We may have left a lot unsaid. But we knew. We both knew.

I guess what I’m driving at, is that from the day I was born until the day he died, Del was always the best big brother and friend I could have hoped for. And even though I eventually grew taller than him, I never stopped looking up to him.

One

~ Lee Swanson ~ 1 Comment

I’m one of the lucky ones. I’m not sick and I’m not in pain. Many people with incurable cancer can’t say that. But there’s something else. I’m not dying either. Not any faster than anyone else on the planet anyway. I’m going to beat this stuff.

That’s not just bravado. It’s fact. The chemotherapy is working.

Not that I don’t have my moments. The specter of my brother hangs over me. I push it away. We’re different. We’ve always been different, and my disease is not like his. Not at all.

Not that much anyway.

Just before Thanksgiving 2006 he called from Minnesota. I suspected something when I heard his voice. It was past my birthday and too early for Christmas. After the hellos and how’s-the-weathers, he told me he had an inoperable brain tumor.

Just like that. Matter-of-fact.

He then went through the whole story of how he had fallen asleep watching a football game and awoke curled up in a ball on the couch with a throbbing headache. When it didn’t go away in a day he went to a doctor who sent him to a physical therapist. She heard his story and referred him instead to another doctor. By now his eyesight had deteriorated to the point where he could only make out colors and shapes, so this doctor referred him to a specialist who finally ordered an MRI and made a diagnosis. Stage four glioblastoma, the 800-pound gorilla of brain tumors.

It’s the sort of story that’s all too familiar to people with health problems. Shuttle from doctor to doctor until someone finally takes the time to not only “see” you, but look at you.

I took in the news in much the way he delivered it; straightforward, unflinching until after I hung up. It was almost impossible to believe. We don’t have cancer. We are heart disease people. Dad’s second heart attack killed him on the golf course when he was 58. Mom was 89 when congestive heart failure finally stole her last breath. Dad left us his cholesterol in his will.

“How scared are you,” I asked my brother.

“Not scared,” he said. “Got a lot of thoughts and emotions, but that’s not one of them.”

“You know,” he said, “you sometimes see other people and think ‘what would I do in that situation’ and you imagine all sorts of things you might think about. And you wonder why they hadn’t considered this or that. Well, the thing is, you do consider all that, and more. Everything you think you would think about – you do. And the stuff you said you’d be smart enough or brave enough to do—when it comes down to it, you’re not. At least I’m not.”

He didn’t elaborate, and I didn’t ask. I figured I knew what he meant and didn’t really want to go there either. You go through the system, through the treatments, even if it’s only going through the motions. It might not be the brave thing, but it seems like the right thing.

His daughter was getting married in early January and we had the “save the date” card and the invitation. But I had just started a new job and was prepared to use my lack of vacation time as our excuse. I had grown up there. I knew better. I wouldn’t go to Minnesota in January for my wedding.

I hung up the phone and booked the flights.

Fortunately for my brother, they lived near the Mayo Clinic in Rochester and he got in to see the head of neurosurgery. The team of doctors treating him gave him confidence. They were all devoted to being positive and aggressive. Radiation and chemotherapy could shrink it they said, and reduce its effects; hold it at bay. Eventually, they told him he had six months to a year to live. Through it all, I only heard a catch in his voice twice. The first was when he told me this was probably going to be his last Christmas.

I went with him for his radiation treatments while we were there. He held my elbow and we walked down a long hallway to the assigned room: a large, high-ceilinged, dimly lit room with a single narrow, upholstered bed in the center. They put a mask over his face, a mold of his head with a couple of X’s on it to show them where to aim the radiation.

I paced the hallway until he finally came to the door again, took my elbow and we made our way to the car and back to their house.

The wedding was appropriately lovely. I got a picture of my brother walking down the aisle with his daughter while he and all the rest of us choked back tears. And at the reception I insisted on a picture of the two of us, telling him we hadn’t both been that well-dressed at the same time since his wedding, or maybe mine. I imagine he knew why I wanted the picture, but we smiled anyway.

When we left he and I hugged him for a long time and I told him I would be back in the spring “when it warmed up.” I held off sobbing until we were in the car.

I never saw him again.

Four days after we got home in January, I went in for my long scheduled annual physical and then it was my turn to call him. “You know how competitive I am,” I said. “Well, my blood test came back forty percent caffeine, thirty percent alcohol and thirty percent leukemia. You’re probably still going to win, but at least I’m in the game.”

That was the second time his voice caught.

My only brother died three months later, and now I’m going through the system.