I’ve got it.
And I was just as stunned as you are.
Oh, where to begin…
I guess with my annual checkup. Don’t get one? You should. I questioned my internist a few years back. Told him that I read in the "New York Times" that it was unnecessary. He was taken aback. Breaking the silence he said to tattoo it on my arm, to get a physical every year. You’d be amazed how much can change in twelve months.
He turned out to be right.
Results weren’t supposed to be in for a week. I got a sinking feeling when his office called the very next day, Thursday, December 3rd. And dialing back as soon as I got the message they told me the doctor was on the other line. But to hold.
This isn’t good.
And it wasn’t.
My white blood cell count was 20,000. Actually, just a tiny bit more. And to make sure their machine was right, they retested it at St. John’s. Came up even higher than that, although they attribute that to calibration error.
But there was no mistake. The number should have been between 5,000 and 12,000, and I was blowing past that by a mile.
I had to see the hematologist.
Because in less than a week, I was going out of town for nearly a month.
They offered me an appointment a few hours before I departed.
That wasn’t going to work.
My internist made a call and got me squeezed in at ten thirty the following morning.
Meanwhile, I surfed the Web. Tried to resist, but you can’t.
Could be infection, stress or leukemia.
I had no infections, I felt completely fine, this wasn’t good.
The hematologist at Santa Monica and 20th said there was only a one percent chance I had leukemia. Whew! It would take a month for a definitive result, but she’d call me at the end of the day after she looked at the blood smear, which would completely rule out leukemia.
But the phone never rang. Until nearly ninety minutes past the appointed hour. When she started talking about something called CML. A type of leukemia. But what really weirded me out was she described the treatment, in detail.
But I thought the odds were only one percent?
Well, now she said twenty.
This was going in the wrong direction.
So I got ahold of Irving. He’s batting 1,000. He’s hooked me up with the best back doctor, the preeminent kidney specialist, the guy to repair Felice’s ACL… He’s got the medical system wired.
But he’d never needed a hematologist.
So he asked his doctor friend, who coughed up a name.
And after stressing all weekend, I called at the crack of dawn and got an appointment at 3:30 Monday. In Beverly Hills with the big guy.
I’d convinced myself I had a sinus infection. I’ve had a post-nasal drip for months.
And this doctor scanned the initial report and said there’d be no problem.
But then he got a peek at the smear. Which at his office, was available instantly.
He agreed with the first hematologist. He saw what she was talking about. But he thought the odds of me having CML were…
And then he raised his hand to the ceiling.
And then, when I asked him what the odds were I didn’t have CML, he put his hand near the floor.
This second guy said there was a definitive test. Which he could get run at Cedars within seven to twelve days. That the month delay the other hematologist was speaking of…they don’t even do that test anymore, it’s inaccurate.
But it didn’t take even a week. Only three days. In near zero weather waiting for Andy and Dan at the bottom of the Elk Camp lift at Snowmass on Thursday December 10th, my BlackBerry rang. I had it. CML. Leukemia.
When Andy and Dan arrived I told them to ski off.
Then I got a few questions answered.
Turns out all of my white blood cells were affected. He’d anticipated only twenty to sixty percent. I had to start treatment immediately.
But first I had to get to the bottom of the hill. And then we had to get back to Los Angeles.
Now when something like this happens, everybody goes into high gear. My internist felt guilty regarding the first doctor’s efforts and said I had to see his buddy, head of hematology at UCLA, who treats Kareem.
But I thought the paper said Kareem had cancer?
Yes, that’s what CML is. Blood cancer.
Monday morning, a week ago, exactly one week after I first saw him, hematologist number two prescribed a pill, told me I could go back to Colorado, to get a blood test in a week and that odds were over ninety percent that I’d be fine.
The third doctor, who I saw at UCLA thereafter?
He was a bit more exact. In fact, there was an 87% chance I’d be fine. Because of Gleevec.
Used to be you got CML and you died. In five years.
Oh, maybe a bone marrow transplant would save you. But odds were fifteen to twenty percent the procedure would kill you.
But then in 1998, this pharmaceutical company in Switzerland developed Gleevec. And since its introduction, 87% of those taking it have gone on to be fine.
But it’s only ten years.
But statistics are good.
And if I fall into the other thirteen percent?
Well, there are two other drugs. And the aforementioned bone marrow transplant. But the third hematologist, the UCLA doctor, preferred to focus on the positive, the 87% who were doing just fine.
But unlike hematologist number two, hematologist number three insisted I stay in L.A., that a return to Colorado was not prudent. You see the Gleevec, if it worked, was going to kill all my white blood cells. And I’d be defenseless against illness. If I got an infection, I could die. I needed to be near an emergency room. And if I got any rise in temperature, I needed to make a mad dash for the hospital.
Well, that scared me. I decided to stay put.
But I couldn’t start taking the Gleevec immediately. Because my insurance company wouldn’t cough it up. They needed to hear from the doctor himself.
Because, you see, Gleevec costs $4,900 a month.
My regular pharmacy doesn’t stock it. Almost no one does. The carrying costs are too high. And only 5,000 people a year get diagnosed with CML.
But eventually, the next day, I got the pills. From the UCLA pharmacy. Which keeps a tiny inventory.
They make you nauseous. It’s not so much your stomach, you have a gag response. You feel like you’re going to throw up.
But only for six weeks. That’s what the doctor, my doctor, the third hematologist, the one at UCLA, treating Kareem, who I decided to go with, said.
I just saw him.
The Gleevec is working. My white blood cell count dropped to 8,450!
But those are all clones of the bad cell. The good white blood cells? They haven’t come out of hiding, they haven’t repopulated my body yet.
My internist said he doesn’t ask questions without answers.
But despite the lack of answers, I’ll tell you I’ve been on an emotional roller coaster. I knew I was going to die. But not SOON!
And there’s a good chance it won’t be soon. That maybe I can live thirty years and die of something else. Then again, the pill, this "wonder drug" as my UCLA guy referred to it, has only been on the market for a decade.
Still, it’s a wake-up call. This is how the movie ends. You die. Your friends and relatives remember you, and then they’re gone too.
It’s all irrelevant.
So if you’ve wondered where I’ve been…
At first I wasn’t gonna tell you. Because I knew you’d treat me differently. Hell, I would. Somebody tells me they’ve got leukemia? That’s SERIOUS!
But the odds are with me.
And after reading a ton of books on my Kindle, and surfing the Web, I’ve realized that, as Ray Davies so famously sang, "unemployment is unenjoyment." Now I know why people become terminally ill and continue to go to work. You’ve got to do SOMETHING! Otherwise your life has no focus. To be rich, footloose and fancy free with no obligations? Not for me. Not for anybody.
But how can I write, how can I work, holding this secret?
I realized I had to tell you. For me.
I needed to wait for a period of stabilization. Which seems to have arrived. I still cannot say out loud that I’ve got leukemia. But for the first time, today a doctor spoke positively about my results.
There’s a good chance I can take this Gleevec and the CML will be busted down to essentially nothing. Potentially for decades.
I hope so.
P.S. My previous blood work, from 2008, was completely normal. This is how they catch CML in most instances, via a routine checkup.
P.P.S. I went with hematologist number three because he specializes in leukemia. Hematologist number two specializes in lymphoma.
P.P.P.S. Anthem Blue Cross covered the complete cost of the Gleevec.