August 4: Update

I've been telling the nurses that my blood counts are starting to go up tomorrow and that I'm going home on Monday.

This shawl has been a godsend, as low energy is usually combined with sudden chills.

I haven't been on my computer much since my update Monday morning. Monday and Tuesday, if I remember correctly, there were a lot of visitors. In my current condition, visiting for an hour or two with someone forces me to have to nap afterwards. Who'd have thought sitting up and talking could require so much energy!

Yesterday—Wednesday—I got up and tried to walk two miles. I made it, though I stopped 6 laps short so I could talk to someone. It was much harder than I expected because I knew my blood counts were pretty good (for a leukemia patient, in this case about 2/3 of the blood you have).

Afterward I went to my room, looked at the mail I haven't looked at, laid down, and had a total energy collapse. I spent the rest of the day laying in bed trying not to move.

I did have a slight temperature, but it never got out of the 99's except once when it was 100.1. The nurses tell me that sometimes this happen when your body begins to make blood cells again.

I'm counting on that being the case.

I decided yesterday to take this day to rest no matter how good I felt.

I feel like taking this day to rest :-D.

I hope this update isn't too boring. I try to put some storytelling energy into my blogs, but I just don't have any today. I'm not depressed, and I don't feel bad. I'm still at peace. I just have no energy.

Storytellers with no passion are not good storytellers. It's the cardinal sin of storytelling.

The Future

In case you're interested (am I sounding like Eeyore yet?), and in case I haven't already told you, here's what's going on.

This is the boring part, though I guess it's not so boring for the doctors that are monitoring the bacteria and the antibiotic in my blood. The doctors have kept my temperature under control for a week now, though, so I'm thinking they're doing an awesome job with this antibiotic.

Anyway, the boring part is just waiting around for my body to kick back on. That takes 10 to 14 days from "nadir," the low point of the chemotherapy. Nadir is usually designed to be at 14 days. Today is day 21 for me, so I've set my heart on having everything kick back on 3 days before what's normal because Dr. Strickland told me he's seen that happen before.

That would mean tomorrow's blood counts would be improved rather than down.

We'll see.

Either way, it's just a waiting game.

Once my blood counts get up enough, they'll release me. Specifically, they want to see my neutrophils at 500. Currently they're at 1.7% of 400, or about 6. (I think that's how it's calculated.)

So, we're not there yet.

After my neutrophils are 500, then I can go home. Two weeks later I come back in for a marrow biopsy to make sure things are still okay. Normally, they would then admit me to the hospital, but Dr. Reddy—my current attending physician; they rotate—tells me that they'll delay to let me go to a house church conference in Florida over Labor Day weekend.

I'll come back in the hospital for a couple weeks for a shorter round of chemo called a consolidation round, go home for a couple weeks, then do another consolidation round.

After that we head toward a bone marrow transplant.

Bone Marrow and Stem Cell Transplants

In a bone marrow transplant, the doctors actually harvest bone marrow from the pelvis of the donor, making numerous tiny holes with a needle to extract the marrow. The donor is under general anesthetic and wakes up feeling like they've been kicked in the butt by a mule.

No stitches, no incisions. Just needle holes—a lot of them.

The soreness goes away in a week.

In a stem cell transplant, the doctors give the donor growth hormone that causes a lot of bone marrow stem cell production, so much that the stem cells enter the blood, and can be harvested there.

Then, they hook the donor to a machine, which takes blood out of one arm, extracts the stem cells, and puts it back in the other arm.

That's a lot easier on the donor, but there's enough differences between the results of the two methods that the transplant team usually chooses one over the other for one or more reasons.

For the patient, there is a massive chemotherapy dose for days before the transplant, completely wiping out his bone marrow. Not everyone can handle that, so it's a lot more viable for young patients. Dr. Strickland says that at 50 years old, I'm on the line between usually no problem and usually a problem.

For older folks, they sometimes try a less aggressive chemotherapy, and then depend on the new immune system to destroy any leftover cancer cells after the transplant.

The biggest complication that recipients face is Graft vs. Host disease. That's sort of the opposite of, say, a kidney transplant recipient rejecting a kidney. In Graft vs. Host disease, the transplant--the new immune system--rejects the body it's put in and begins to attack it.

You can imagine that's bad.

Apparently, there are drugs that control it, and GVH, as it's called, can vary from a skin rash to a fatal destruction of many bodily organs.

Apparently, it's hard to predict no matter how well or not well you're matched with a donor.

I talked to a man yesterday who had a bone marrow or stem cell transplant 6 years ago. I'd just been reading about transplants the night before, and I'd read that the first 6 months to a year can be pretty miserable with all the sorts of problems that are also side effects of chemotherapy: mouth sores, gastrointestinal problems, and graft vs. host disease with rashes and other symptoms.

So I asked him if it was rough. He paused a moment, trying to decide if he was going to discourage me, and then he said, "It was extremely rough for a year and a half. Better after that."

He then told me not to get him wrong, it was tolerable, just extremely rough.

Well, now he's relapsed. His transplant was for myelofibrosis, which often leads into AML. The transplant took for a while, but now he's got AML.

Life's not easy, and not everything we try has good results.

As he left the break room, he said, "But, hey, it's 2011, it's 5:30 in the morning, and the sun is still shining on my head, and for that I'm grateful."

Gosh, I love people like that.

So, I have a tough row to hoe.

For all of you who are proving to love me, apparently more than I love myself, which is very difficult, I want to remind you that from my perspective, this isn't about me. There are 7 billion people in this world. In general, one less doesn't make much a difference unless you can make your life count for something. I don't want my tombstone to say, "He scored 20,000 on such and such video game."

I don't need to change the world. I just want to be like George Bailey of It's a Wonderful Life and do what's in front of me to do.

A little pain and a little risk to get and give a lot of love. It's a good tradeoff.

There's two things that give me hope of making a difference in people's lives.

• Never underestimate the power of a kind word. So often, it's the little things that matter.
• Jesus offers us the opportunity to live a life that's far more than our own. "I am crucified with Christ; nevertheless I live. Yet not I, but Christ lives in me, and the life I live in the flesh I live by faith in the Son of God who loved me and gave himself for me" (Gal. 2:20).

Same's true for all of us. Never underestimate yourself.

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. (Marianne Williamson, A Return to Love; accessed August 4, 2011)

This is why it's all good.

This is the way, and I'm looking forward to walking in it.

Back to the Mundane: Hair

My pillow case is covered in black hair now. My lips are cracking, probably from rinsing my mouth with salt water to take care of the sore on my tongue. The nurses gave me vaseline for my chapped lips, which works amazingly well ...

... both for healing my lips and for picking up hair off my pillow.

This morning, I washed my hair first, and then I had to rinse hair from my face and most of the rest of my body.

So, tired of chewing on hair, I'm buzzing it off today.

That's all the news I can think of!

July 31 Update 3: Going Bald? Or Getting Younger?

I started this yesterday, but ran out of time, so I finished it this morning.

I mentioned that Jerry had told me that a nurse--two nurses, actually--had told him that the success of chemo was tied to how much hair you lose.

I mentioned that to Dr. Strickland at the end of the biopsy, and he asked who told me that. I withheld the name of my source, though of course I'd already written it on the internet for the whole world to know. Dr. Strickland knows about my blog, and my wife's, so he'll know about it.

He and Dr. Lammers laughed at the suggestion, and then they told me, "Give it time. You could lose your hair, and probably will, any time over the next two weeks."

The next morning, Christina--one more young, very sweet, very pretty, extremely competent nurse--looked at my shoulder and said, "You have a couple hairs on your shirt." Then she smiled this coy smile.

I was trying to figure out why a couple hairs on my shirt was a problem, when my wife said, "Are you losing your hair, dear?"

I reached up, ran my fingers through my hair, and drew out at least twenty hairs.

Apparently.

What's interesting is that it turns out I'm only losing white hair!

It only took a few hours for my hair to be noticeably thinner, and noticeably blacker. It took even less for my goatee to look patchy, so I shaved it off.

The end result is that I look ten years younger!

So, what's going to happen? Will I eventually lose the dark hair, too?

That was Friday. All weekend I lost only white hair. It's amazing how much hair I lost over a day or two, how much darker my hair looked, and yet I could still always reach up and pull out 10 or 20 gray hairs.

The day before the hair loss; too much gray to keep the beard

So this morning I pulled two black hairs among the gray ones.

We'll see.

July 28: The Big Day

Yesterday I was mostly in the haze of a neutropenic fever and sleepiness from the Benadryl that they give me when they give me blood. You can get an update on yesterday from my wife's blog.

A few days ago Dr. Strickland said, "Just four or five days now!"

My parents visiting

I said, "Uh ... till what?"

He looked at me like he was surprised I didn't know, and then I realized. "Until the biopsy?"

"Yes," he said, but I was worried I'd ruined what was supposed to be a hopeful moment. I found him in the hall a little later, and I said, "You know, it's very encouraging when your doctor is looking forward to the biopsy."

Until that conversation, it hadn't really dawned on me that the biopsy is the test of whether the chemo worked. It's a big day!

So today's that big day. At 1 pm, Dr. Lammers will come in and cut a small core out of my hip bone and draw some liquid marrow. (I had thought I wouldn't have any liquid marrow, but apparently I might.)

Jerry and Prayer

Jerry's biopsy did not come back clean, and now they've started on a new regimen today. He's got an abscessed tooth that they're treating with antibiotics and pain medication, so he needs to complete his chemo so they can work on that tooth (and several others). It's impossible to do even dental surgery on a patient with no immune system.

His son Jeremy was there this morning. Jeremy's very polite, probably in his 20's, and he's got an intelligent, together look about him. You could see the pained look on his face.

My dad reads to my daughter the same way I do

Jerry's a real talker--his son nods and adds information as needed--and he started with incredible disappointment (boy, can I relate!), but as he talked he seemed less and less bothered, until at the end he even seemed pretty hopeful. Dr. Strickland had told him, "That's why you're here. We specialize in the second round."

Apparently, about 50% of the biopsies are clean after the first round. Someone told Jerry that the 2nd biopsy is clean about 40% of the time.

I said, "What do they do if the second one is dirty, too?"

"They wouldn't tell me," Jerry replied.

Hmm.

Please pray for Jerry that this second round will work for him. When you have to continue the chemo, it means that for another 7-10 days--or perhaps more--no damage to your body will heal. Every small malady is cumulative. No surgery is possible for any problem. It's really rough.

Really, please pray for him. There are a lot of you praying for me. I'm assuming that by now, my biopsy is a foregone conclusion, clean or dirty. Because so much prayer's been offered on my behalf, God's already mapped a path for me.

Jerry doesn't have the same support.

Hair and Biopsies

Jerry told me that one of the nurses who'd been here since '94 told him that she was hoping the best, but that she knew before he went for his biopsy that it wouldn't be clear. She said it was because all his hair hadn't fallen out.

He has a standard male balding pattern, starting from the back of his head, which is obviously new because the skin's so white compared to the rest of his body. The hair on top is very, very thin. I, on the other hand, have lost no hair at all.

Jerry claims the nurses agree that you can tell how the chemo's working by how much hair you lose.

That doesn't make much sense to me, but since I haven't lost a single strand, I'd better hope that doesn't matter. It seems a better indication of effectiveness that the chemotherapy shrank to nothing the two larger tumors on my back, the incipient one on my right clavicle, and the one growing in my upper lip.

Large family means lots of visitors!

It's actually odd that I haven't lost any hair, though. One of my chemotherapies has hair loss as its most common side effect: "Hair loss (in 20%-70% of patients) may be partial or complete hair loss."

Doesn't 20% to 70% seem like an awful wide gap? They couldn't narrow it down better than that?

But I have another one that his this listed as a side effect: "Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed."

So let's hope the tie between hair loss and a clean biopsy is nonsense.

Hanging out in the family room back when I felt great every day

Actually, none of this really applies to me, anyway. This is a path God's got me walking. I'd hate to be counting on odds and hoping for the best. I would worry myself literally half to death.

Please pray for Jerry. He has a brother with a 6/6 match for a bone marrow transplant, which is the best situation you can hope for. It would be awful if he didn't make it to the transplant!

Food, Fevers, and Weight Loss

Note on the food I mentioned day before yesterday. Yesterday the meals came exactly as ordered. But I didn't even look at the dinner tray. I just asked my wife to grab any juice on it and send it away. I guess they agree with "starve a fever, feed a cold" here because no one tried to force me to eat, which was wonderful.

When I walked this morning, my pants were falling down. I told one of the nurses, "Neutropenic fevers make for a great diet plan." She said, "Oh, yeah. Chemo is great for the figure."

Please pray for Jerry!