August 14: News and Risk

Today I'm putting those of you that read my whole blog to the test. This first part, with news and a story, is not that long, and some of you will just want to read that. The parts on leukemia and the risk involved are much longer, but for those that are curious, I think it answers a lot of questions.

My neutrophils were at 300 this morning. That's a jump of 90. It seems very unlikely I'll hit 500 and be out by tomorrow, but maybe by Tuesday. I got ahead of the game and arranged for a curry dinner cooked by my dad Tuesday night. I sure hope I don't miss that!

We'll see. I'm reminded every day of the importance of just staying in God's plan.

On the other hand, we have a saying back at Rose Creek Village, where I live, about "grace running out." When God has you doing something, there's this incredible provision of patience and energy to follow through on it. But as the job comes to an end, the grace seems to run out. Instead of being focused on the day to day, your mind begins to dream of home and rest in preparation for the next task God has for you.

Hannah and I are feeling that way. I spent a little time looking out the window today, wanting to get out in the sunshine, enjoying the green I could see between the buildings of west Nashville.

In fact, I even noticed how empty the sidewalks were on a Sunday afternoon and called the nurse to ask if I could walk outside a bit. Another nurse had told me that if cabin fever began to set in, they'd try to get me outside during a time when not many people were around. So I asked.

Joy—that's this nurse's name—looked a little terrified at the thought of asking, but she assured me that she'd give it her best shot.

She returned a few minutes later ... apologizing. She'd asked two doctors, and they'd both said no.

Not long after, Dr. Watson, the young intern who replaced Dr. Halliday as the person who checks us each morning, came in my room. He said, "I had to check on you. Are you okay? They told me you were really needed to get outside, and I told them, 'That's impossible. Mr. Pavao's like the best patient we've ever had.'"

I laughed. I told him that I'd simply noticed the empty sidewalks and what a nice day it was and was acting on a nurse's suggestion from a couple weeks ago.

Dr. Watson told me that if I really desperately needed to get outside, then he'd consider it (note he carefully didn't say "allow it"). Then he told me both that if I picked up some infection outside and was stuck here another week or two, he'd never forgive himself. Further, he said, did I really think it was worth the risk, small as it was, to go out today in a neutropenic state when I'd be released in a day or two anyway?

Rather than walk outside, I decided to go visit Don, who was released on Wednesday but readmitted Friday (more on that in a sec). As I walked by one of the nurses stations, one of the nurses told me, "We really tried. I tried to tell the doctor you were really depressed, but he wouldn't believe it."

We laughed, and I had a good visit with Don.

Which, I suppose, probably drives Dr. Watson's point home. For some reason, Don was allowed to go home while he was completely neutropenic. His neutrophil count—according to him; I didn't see a chart or anything—was zero, but they sent him home, anyway. Two days later he was back with a fever and gastrointestinal problems.

He had a lymphoma, and he got a transplant that was "autologous," which means he got his stem cell transplant from himself. They harvested some of his own "hematopoietic" stem cells while he was in remission from the lymphoma, ran his white cell count down near zero, and have his own stem cells back to him. So maybe there are rules that apply to his situation that don't apply to those of us with leukemia.

Those rules didn't work too well, though.

Jerry and High Risk Procedures

If you are prone to worrying about me and you're not good at trusting God, you probably don't want to read the rest of this post.

Jerry gets better every day. He's full of energy, and he's happy. He also is ready to move on. He's already anxiously checking his neutrophil count each day, even though it's pretty much impossible that they'll bump off zero for another two or three days. In most cases, they shouldn't increase for another five days or so.

I went to visit him night before last, and Dr. Strickland was in paying a friendly visit. He told me that he was going to drop in on my room, too, but I'm glad that didn't happen. Jerry asks a lot more questions than I do, so it was a lot more informative with both of us talking to him together.

Jerry said, "Let me ask you the big question."

Dr. Strickland said, "Oh-oh."

Jerry asked, "Let's say that I make it all the way to transplant. What are the odds that I'm go into remission and stay there."

Dr. Strickland was surprisingly straightforward. "40 to 45 percent," he answered.

Wow.

I don't care much about statistics like that. I'm not a statistic. I'm a child of God, and I don't believe leukemia can kill me. My Father will call he home when he wants to, in the way he wants to.

So odds are nothing.

But because I never think of the odds, they stun me as much as they might surprise you.

45 percent?

I have a really cool disease. This is not one of those things where you just thank God for modern medical treatment and unless something really unusual happens, you're going to be just fine. This disease kills in a year or two in most cases.

Back when I thought I had Blastic Plasmacytoid Dendritic Cell Neoplasm—because that's what the pathology lab diagnosed—I had read that BPDCN responds "well" to intensive, AML-style chemotherapy.

I read that in an abstract, which is a paragraph summing up a scientific paper prepared by researchers. A wonderful friend told me that because he works for a university, he could download the whole paper for me for free. I asked him to do that, and he sent it to me.

It turns out that responding "well" to intensive chemotherapy meant that almost 50% of the people went into remission successfully.

What about the rest, you ask? They died in a few months.

Because Vanderbilt was unwilling to confirm the BPDCN diagnosis, and because they weren't able to define my leukemia in any traditional way, the doctors had to talk with people throughout the United States about how to treat me. They decided on a standard, intensive, AML-style chemo with the addition of another medicine usually used to treat ALL, a leukemia found most commonly in children. I got only a light regimen of the ALL chemo.

What was the likelihood of that working?

As Dr. Strickland likes to put it when talking about me, "There are no data."

Did you know data is a plural word?

I think it's fair to say that 50-50 is the best I could have hoped for ... IF my life was under the control of statistics and not God.

And then there's the 50-50 shot of the marrow transplant succeeding. Plus the additional possibility that even if it does succeed that graft-versus-host disease will give me problems for a year or more or perhaps even for the rest of my life.

That's probably why the last official survival rate at 5 years for AML, which is the leukemia Jerry has and to which mine is the most akin, is 24.7%. Dr. Strickland says it's more like 1 in 3 nowadays.

As the lizard in The Last Starfighter once said, "I've always wanted to fight a battle against overwhelming odds!" (Note: Don't watch that movie. It's not clean. I saw it decades ago.)

Graft-versus-Host Disease

GVH is pretty interesting, though having it is potentially awful.

In most transplant cases, you have to worry about the host—the person receiving the transplant—rejecting the transplant. For example, if a person receives a kidney, the danger is that his or her immune system will attack the kidney as a foreign invader.

But in a bone marrow or stem cell transplant, it's the immune system that's being replaced. The danger is not so much that my body will reject the transplant, but that the transplant will reject my body!

Thus, it's "graft" versus "host." The bone marrow or stem cells "engraft" themselves in my body, and I'm the "host" for the transplant.

Dr. Strickland explained that they have to balance the drugs that suppress the immune system. You want the immune system to grow and to be strong enough that if there are any leukemia cells lingering, that the new immune system will destroy them. But you don't want the immune system to reject the entire body and begin to attack the skin and organs.

So it's a balancing act, and the hope is that as you give the new immune system just enough rope to work, it will grow used to the new host, accept it, and my and my new immune system will live happily ever after.

A Little More on the Risk

The way this works, as you'll know if you've been reading this blog regularly, is that they give you a massive dose of chemotherapy that knocks your entire blood system and your bone marrow, which is responsible for producing your blood system, down to almost nothing. Hopefully, this takes out all the cancer cells, and what's left of your bone marrow completely rebuilds itself, but healthy.

In the meantime, they keep you alive by giving you other people's blood and keeping you in a sterile environment, usually with a steady, relatively large dose of antibiotics.

That's what is going on with me right now. Dr. Strickland, Dr. Greer, and whoever else was involved in designing my therapy did an excellent job, and the chemo did exactly what they wanted it to. Now, my blood system is growing back.

They'll do at least a couple smaller rounds of chemo, which are just designed to hopefully nail any loose leukemia cells that might have been missed by the first intensive round.

Depending on your personal health, your age, and your type of leukemia, they might do several of those "consolidation" rounds and hope that does the job for you. The older you are, and the poorer health you are in, the less likely you'll survive the sort of intensive chemotherapy they have to give you to prep your for a transplant. Also, with some forms of leukemia, you may have a good enough chance of staying in remission that it's not wise to try a marrow transplant.

When you get the first round of chemotherapy, they give you chemicals for about 7 days, and then they let the chemicals work for another 7 days. When they do the transplant, they give you much stronger chemicals for a shorter amount of time. They can't mess around with second tries. They have to devastate your immune system down to nothing, then get the other person's stem cells inside of you.

Not everyone can handle that. Dr. Strickland says that at age 50, I'm right on the line between those younger than me, most of whom would qualify to face a transplant, and those older than me, most of whom wouldn't.

With my disease, the odds of my staying in remission after chemotherapy might as well be zero, so it's transplant for me no matter what. There is an alternate plan involving a less intensive chemo if I can't handle a normal transplant, but that's not best in most cases.

Anyway, the whole process can fall apart at the outset. It happened to Jerry. His first round of chemo didn't work. It only got about 60% of his cancer cells.

That did a number on Jerry's attitude. He had an abscessed tooth that couldn't be treated while he was in chemo, he had no energy, and he generally felt awful, and now they were going to have to start chemo all over again.

He asked about going home, and the doctor said he could do that, but he would be dead in 6 to 8 months.

Dr. Strickland then explained that here at Vanderbilt they specialize in round 2. They're excellent at finding the right combination of drugs that will do what wasn't done with the first round.

Jerry gave in, and Dr. Strickland was right. The drugs of choice were so good that Jerry's blood counts showed the drugs were working within two days.

The problem is that Jerry came in with a bad heart. His heart rate inexplicably and suddenly dropped from the 70's to the 40's. They stopped his second round of chemo.

That's when I got everyone praying (thank you!). The cardiologist came in and said Jerry was fine and could continue, but they had to discontinue one of the drugs he was getting.

During all this, Dr. Strickland told him that for AML patients, they were usually successful 50% of the time on the first round, but on the second round it was more like 40%. Jerry asked about what they did on the third attempt, and Dr. Strickland wouldn't answer.

As it turns out, a nurse explained that if two attempts at that first round of chemo don't get all the cancer cells, then a complete reevaluation is needed. Mostly, though, no one can withstand three rounds of chemo in a row, so they send you home for a while and possibly try again later. Probably, though, two failures means you're incurable.

So there's a lot of pitfalls that can happen along the way.

I keep remembering the words of Psalm 23. Who would have thought they would ever apply to me so much!

Yea, though I walk through the valley of the shadow of death, I shall fear no evil. For thou art with me, thy rod and thy staff, they comfort me. Thou preparedst a table before me in the presence of mine enemies. My cup runneth over.

Amen!