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.

Brothers

(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 were two of us in the picture. 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. I don’t remember that. I do recall him conspiring with our babysitter to convince me there were wolves in the basement. I turned on every light whenever I went down there, and hurried out of the basement for years.

But I also recall that Del looked out for me. He told me what to expect when I went from sixth grade to junior high.When Del went to college, any time 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 it much thought 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.

By the way, Del often regretted he ever 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 very 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.

Not that we always got along. We were boys – 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, they might be what I call Scandinavian conversations. “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 his brain tumor had taken control of his life and when Pat put the phone to his ear I said "you sound pretty good." He said "well, I feel pretty good." I let him get away with that. Before we hung up I told him I loved him. "Yeah, you always had that problem," he said. This time I was going to have the last word. "Well, not always," I said. We both laughed.

So 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 Del, I never stopped looking up to him.

One

(April 2007) 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 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.