leukemia

Halfway

~ Lee Swanson ~ 17 Comments

I’m at the clinic today, waiting to find out how I feel.

Waiting is the operative word today. Everything is taking longer than it should. I got here at 7:00 so I could be first in line for lab work. The sooner they take the labs the sooner they get the results. The sooner they get the results the sooner they can start the infusion. And the sooner they start the sooner they finish and the sooner I can go home.

In theory.

Today it was 10:20 before they came with the Rituxan. That’s my infusion drug. This is round three of six. Once a month until the middle of November. And there’s also the daily dosage of ABT-199 pills. It’s an experimental Bcl-2 inhibitor. (If you’re here for the first time, I have CLL and am in a clinical trial to try not to have CLL).

So anyway, the lab results look good.

Warning: here’s the part where I go through more numbers than a bookie and a lot of very highly technical scientific data and if you think it’s been boring so far, just wait.

First, a lot of the counts are below normal – white, red, blue, hemoglobin, platelets, alcohol – and not even caffeine is above normal. So that’s good. Probably better if everything is in the normal range, but mostly, low is better than high. My white count was way high and pretty much all leukemia cells when I started the trial and now it’s below normal and mostly, good white cells.

And then there was my exam. I was hooked up to my IV pole so the doctor came to me. And he had the results of yesterday’s CT scan. He went through them one by one. Spleen, normal (it was enlarged before the trial). Liver, same as spleen. I mean it’s normal now, was enlarged before. I know your liver’s not the same as your spleen. One of them does something and the other does something else. Sorry to have to get all anatomical on you, but it’s important to have an understanding of these things. Got that?

Foghorn Leghorn
I say, I say, it’s gone now. Pay attention boy.

The report doesn’t say they’re normal. It says they’re “unremarkable.” I was offended.

And then lymph nodes. It’s blood cancer, but if your lymph nodes are enlarged, those are tumors. Lymph nodes and the spleen (see above) are where leukemia cells are parked. So I’ve got one node that’s 6 millimeters by 4 millimeters, but before the trial was 11 x 10. Another one was 14 x 6 before and it’s gone now. It’s gone now.

He read those off and then said “that’s really amaz.. really good.” In the game of numbers, if your lymph nodes are below five millimeters and your platelets are above 100, you’ve had what they call a complete response to the medication. So that one lymph node is right on the cusp and my platelet count is 104. And I had only had two of the six infusions at the time of  the CT scan.

So far in this trial, 84% of the patients who have completed the infusions have had positive results and 36% have had a complete response. Still really small numbers of patients. But looks like I’m on the way to a complete response. I’ll do a couple more infusions, in September and October and then another CT scan. If the results hold up, then after the sixth and final infusion I do a bone marrow biopsy. That lets them literally count the number of leukemia cells. If it’s a complete response, maybe I stop the pills, maybe I keep taking them. We’ll figure that out if the time comes.

So, yay.

I started the trial in late May and it’s routine now. A handful of pills every morning. And a diary to keep track of what time I take them.

No side effects. Just effects.

If you’re wondering, I feel pretty good. Pretty damn good.

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.