September 2: Big Goals and Half Marathons

I got an official "you're in remission" email from Dr. Strickland yesterday.

For all we know, then, I'm cured. But "for all we know" is a big phrase. Leukemia, at least most acute leukemias, are propagated by one mutated cell. It's entirely possible, even likely, that if I have one loose leukemic cell hiding out in my body somewhere, the disease could come back.

So, on Tuesday I have one more round of chemotherapy. I go in every morning at 8:00 am for four days. Then there's a week letting the chemo work, then a couple weeks for my blood to build back up. That pretty much fills September.

Then we work on the marrow transplant.

Big Goals and Half Marathons

As I said in the last blog post, some friends of mine are running a half marathon in Nashville in November. That's 13.1 miles.

This morning I went out walking and running for 25 minutes, and I decided I'm going to give my best shot at doing it with them. A little math says that I can do a half marathon in under three hours even if I only jog about 4 of the 13 miles.

The question, as far as that being a realistic goal, is how much I'll be able to exercise during the second round of chemo. It's a lighter round, but according to the doctor it will knock my white blood cell count down really low. That means it will also knock my red blood cell count down pretty low, and that's my oxygen transport system. It doesn't matter how good your lungs and muscles are if you don't have blood to carry oxygen from one to the other!

I should be recovered by early October. Will that be enough time?

There's no telling, so here's my plan.

I'm not going to register for the half marathon until this chemo is over, but otherwise I'm committed to it. I'll let you know how I'm doing on this blog.

In the meantime, the half marathon has the Leukemia and Lymphoma Society as its official charity partner, and I have a friend running who is raising money for them. I do not know how much she's raised, but let me put in a pitch for supporting her, which you can do at this website.

She's trying to raise $100 per mile. Even $1 per mile ($13.10 total) would help her do that, and if you sponsor her through her website, there's no mailing of checks involved or anything.

Oddly enough, the race is called the "I Run for the Party" race, and there's a big block party on a street with some honkytonks on it—Nashville's Broadway.

So it's not a "Race for the Cure" or anything, but, hey, if party-goers want to support the Leukemia and Lymphoma Society, I'm certainly all for it.

A Dare

Let me give you a dare.

I was released from the hospital about 3 weeks ago. While I was in the hospital I received 14 units of blood, and to this day I'm still below the normal range on my red blood cell and hemoglobin count, which are responsible for providing oxygen to my body.

As of today, I'm pretty sure I can't run further than a half mile straight, and even then it's a pretty slow jog.

I'm going to do a half marathon on November 12, hopefully in under 3 hours.

Here's a page with a list of half marathons in November in Indiana, Oklahoma, Arizona, California, Vermont, and Wisconsin. That web site also has training tips for doing a half marathon.

Anyone want to try to get ready for a half marathon by November with me, but in your own area?

If we include December, then we can add Texas and northern California to the list of locations. An internet search might find you one closer to you.

Remember, I'm making allowance for walking 2/3 of it.

Doing something like that just might change your life.

And if you're really a go-getter, and you want to make it a fundraising idea, then here's how you do that.

I did some searching on the internet, and as I would have guessed, most web sites think that going from the couch to a half marathon in 2 or 3 months, even if you walk 2/3 of it, is ridiculous. So keep that in mind, but I'm not retracting my challenge. I've been running throughout my 40's, so I should have the bone and muscle "infrastructure" for it.

You might want to get a physical. If you get the right doctor, she might say, "Hey, if you build up for this and walk a lot of it, you can do it"

Or she might not.

Let me throw in a plug for the documentary Fat, Sick, and Nearly Dead. It can be streamed for free on Netflix. Blockbuster and Amazon have it online, too, but not for free.

The idea of "rebooting" and living differently afterwards is one I highly recommend. My latest reboot was forced upon me by leukemia (one more benefit of leukemia), but it's not the only "reboot" I've done.

Most of us could use more reboots.

August 31: Other People's News

I got a call today giving me my schedule for next week. That's 6 days in advance, since Monday is not included in the schedule. Earliest I've had it.

Don

Let's start with Don. He's the guy I talked about in the hospital. He got a stem cell transplant from himself. (You can read about that sort of thing on the internet by searching for "autologous stem cell transplant.") They sent him home the day after his transplant, even though he had no neutrophils (bacteria-fighting cells), and he got sick and was back in the hospital two days later. He was still there when I got out a couple weeks ago.

Don, visiting me in hospital

He's out now, and so I arrange to have lunch with him ... and his rabbi.

I'm fifty years old, and that's the first rabbi I've ever met!

We asked him a number of questions, and the rabbi told me a history of Reform Judaism, which is his denomination, and then how Conservative Judaism broke off from that in 1885. There's also a Reconstructionist ...

Wait, wait. This blog's not about Judaism.

Don looked really skinny ... and really bald. I guess I look really bald, too, but I've put on five pounds since I left the hospital.

We met at Noshville, which is a NY-deli-style restaurant. It had a lot of kosher foods, including two beers that they called "Chosen Beer." One was "Genesis Ale," and the other was "Messiah Brew," or something like that. I ordered the Genesis Ale since I've been going over Genesis with my children in school.

Genesis Ale is very good.

Anyway ... Don's blood counts sounded real good to me. His white blood cell count is higher than mine, so he must not be neutropenic (lacking neutrophils) anymore. He has an appointment Friday, and they may let him go home over the weekend.

If the transplant took, he'll just get better and be able to forget he ever had lymphoma. That's what you can pray for him. It's possible he's cured, and if he is, he's done.

The Parthenon (replica, of course) at Centennial Park in Nashville (Tennessee)

Laurie Ann (My Sister)

My sister lives near Nashville ... Nashville, North Carolina.

They got ransacked by this hurricane that just came through. Before that there was an earthquake, though I don't think that did any damage. The hurricane was followed by a tornado watch that caused my sister, in some sort of act of great brilliance, to challenge Mother Nature on Facebook with:

Bring it mother nature. I got God on my side.

That was at 5:34 pm two days ago. At 5:43 pm—9 minutes later—she posted:

Ok Mother Nature I'm sorry. Lightening just struck and we felt it in our bare toes.

This morning, her pet motorcycle was stolen. (Yeah, I meant to write "pet"; that's not a typo.)

This morning, as I was walking, I was thinking about all the things that happened to her. That got me to thinking about what sometimes comforts me. Hardships make great stories. That's not much comfort if you lose a loved one, but it can be great comfort if your house burns down and no one is hurt.

Yeah, I think the storytelling possibilities for the rest of your life outweighs the tragedy of having your house burn down, though I'm assuming you have insurance and are going to get another house.

Then I got to thinking about saying that to someone. "I'm so sorry your motorcycle got stolen, and a hurricane came through so that you're without power for a week. But, hey, think of all the stories you're going to be able to tell!"

It's a good way to get horrified expressions from most people and punched by some.

But I thought, "My sister could handle that. She's a trooper AND a major storyteller. She'd agree it's worth it for the jawing time down the road."

Kids playing at Centennial Park

After the walk, I went to lunch, and we stopped on the way back at Centennial park. We didn't get back until around 4 pm I found another Facebook post from my sister:

i need a break. Earthquake, hurricane, tornado, stolen motorcycle, no power for 5 days, now no internet for another 5 days.

That is rough, but the truth is that as soon as she can get out with friends, she's going to be hooting and hollering, swapping stories, and getting in her word than normal because she's got more to talk about than usual. If those things hadn't all come at the same time, none of them would make much of a story by themselves.

The fact is, when it comes to facing tragedy, I come from pretty good stock. Life can take anyone down; me, my sister, anyone (well, except Jesus himself, and maybe Gandhi, who gave Jesus all the credit—arguments accepted on the Gandhi giving Jesus credit thing later).

Anyway, this is my weird way of encouraging my sister, telling her these sorts of things are right up her alley, and when nobody dies, it's all worth it in the end.

Alaina

Alaina's my secretary, who's been handling a lot of the financial side of things back at Yachad's warehouse in Selmer. She's also gotten inspired about running, and she's intending to run a half marathon in November here in Nashville with a couple other ladies.

That's Alaina in the middle; Quinn, on the left, ran my first half marathon with me when he was 14 or 15.

I was supposed to try to run a 10K with her this summer, which helped bring my leukemia to light because my training for it was failing and failing badly.

Anyway, she said something about the race supporting the Leukemia & Lymphoma Society's Team in Training program. I'm not sure exactly how that works, but I'm pretty sure you can sponsor a runner with contributions to the LLS.

I looked into Team in Training years ago, and I got very impressed by the LLS long before I ever dreamed of having leukemia myself. Their statistics on the improvement in the treatment of leukemia and lymphoma were very complete, and they're a very up front, open organization. I've never been much of a fundraiser, though, so I didn't follow through on it.

I'm a little more motivated now, as you might guess, so if you're interested in sponsoring Alaina or one of the other two ladies, leave me a comment, and I'll try to find out how you can do that.

August 30: Marrow Donors (The Part I Forgot)

I probably should not have forgotten this, but we found out today that the three possible U.S. marrow donors for me are not full matches. They won't do.

I only remembered because my sister left a note on the blog I posted this afternoon saying she didn't want to ride her bike out at Christmastime. (Very wise.) Plane ticket is no problem, Laurie Ann.

David and Laurie Ann repaying me for childhood tortures

Dr. Strickland tells me that if he does use Laurie Ann, then the chances are they'll need to do a non-myeloablative transplant. (I love using that term! Big word, very medical sounding, and I understand all the parts of it. I have just a few words like that, and there's something fun about them.)

So, okay, for those of you who don't have leukemia, lymphoma, or some other disease requiring the replacement of your bone marrow, a "non-myeloablative" transplant is one in which they don't completely wipe out (ablate) your bone marrow (myelo). Instead, they just lower my marrow enough so that the transplanted marrow can out-compete it, take its place, and create a new immune system.

They then depend on that new immune system to blot out not only what's remaining of my blood system, but also to destroy any leukemic cells it finds.

Apparently, my immune system has gotten okay with whatever warped blastic (blastic, meaning immature, not blasted, meaning something I'm mad at) blood cell multiplied itself uselessly throughout my cardiovascular system. My sister's immune system, however, should be horrified at this delinquent, juvenile blood cell—and at all its clones—and should put it to death.

Dr. Strickland explained that this is not best because the chemotherapy should be part of the cure, with the transplant dealing the final blow but being more for recovery than for cure. Myeloablative transplants are like that, but in a non-myeloablative transplant the cure is almost entirely dependent on the transplant.

The problem is that a full, intense, ablative chemotherapy combined with a transplant of marrow that is not a perfect match—thus producing a lot of graft vs. host problems—is too much for some systems to handle. Am I young and healthy enough to handle it? I'm in the debatable range, and that would be up to the transplant committee.

The question is always, what's the greatest risk?

It seemed all the more clear today that Dr. Strickland doesn't want to do the partial match from my sister. He wants to do an ablative transplant, but that requires a full match or close to a full match. For a stranger, that would be 9/10 or 10/10.

They match 6 spots on the DNA with a sibling, making sure that you have the same two genes on that spot in the DNA. With a stranger, they match 10 things, not all of which are DNA issues.

To give you an example that might help. I have brown eyes, but because brown eyes come from a dominant gene, it's possible that I have a gene for both brown eyes and blue eyes. Eye color doesn't matter for marrow transplants, but just as an example, if someone were to match me in the way required for bone marrow matches, they would not only have to have brown eyes, but they would have to have one gene for brown eyes and one for blue eyes. There's 10 issues like that, which is why you're so much more likely to find a donor in as sibling, though even then there's only about a 25% chance.

Somehow, Dr. Strickland seems confident that there are other options besides my sister.

That's weird, though. He said the team was checking cord blood, which really threw me. I asked him, "What do you mean, cord blood?"

He explained that just meant they were checking to see if other people match me.

That doesn't make any sense to me.

He's still talking about checking my two sons that are over age 18. So obviously, by "options" he does not mean that he already has an alternative donor.

I didn't feel like grilling him for hours, so I gave up.

Like everything else, they'll tell me at the last minute.

For example, on the way out today, I asked when to come back. I know I'm to come back Tuesday (next week), but I don't know what time. They checked.

The answer?

They don't know what they're giving me yet, so they'll let me know. Dr. Strickland had some definite thoughts today. He told me about them. This new plan, based on an additional medicine that treats both ALL and AML (I have symptoms of both), would have me coming in Tuesday through Friday next week to receive chemo morning and night each day, rather than Tuesday, Thursday, and Saturday as previously planned.

So once again, they'll call me at some point before Tuesday to tell me when to arrive.

For the first chemo, they called me at the last minute, and when I came in, they still didn't know what they were going to treat me with!

I don't blame them. They're figuring it out as they go, and they were right on target the first time. This is the A team ... first string ... top of the line.

So I'll wait around to hear from them.

Next stop Jacksonville, Florida for a home church conference. We're traveling with four other couples, three from Rose Creek Village and a younger couple from Memphis.

I have things to do. I know that if I don't get a donor, I'm supposed to relapse and die. If my sister is the donor, there's supposed to be dangers and a lot of problems with graft-versus-host disease.

The natural order of things is going to have to excuse me, but I'm not doing that. I have a lot of people praying for me, and I have the Word of God telling me what to do. I'm just going to go ahead and live and do whatever he says rather than worrying about all those other details. I'm very fortunate that God delegated those details to his man of the hour (at least in my life), Dr. Strickland. To me, he's as much God's choice to rule my treatment as Barack Obama is God's choice to be president of the United States of America. (Ha! I couldn't resist that. Romans 13:1-8 is every bit as true as Romans 8:28.)

So with Dr. Strickland appointed by God to succeed at making me live, I'm going about my business, helping to school my kids, writing blogs, and going to Jacksonville to meet others who either understand the church or want to understand the church so that together we can offer survival, security, social acceptance, spunk, and self-realization through the only power able to provide it.

August 30: Biopsies, Scary Nurses, and Schedule Updates

We had a very rapid morning, even though there was a lot of waiting.

Blood was drawn. My white blood cell count and my neutrophil count were both way down but still in the normal range. The doctor told me the numbers were really good, as my red blood cells are still returning. They, too, are almost to the normal range.

The pathologist gets the marrow right at bedside

So I asked him about the effects of the "consolidation" chemo, which is meant just meant to prevent relapse. I had no idea how intense it was. I just knew it was less intense than the original "induction" round, which was meant to put the leukemia in remission.

Dr. Strickland explained that the consolidation round would be strong enough to make me neutropenic again, which means it's pretty intense. My 2150 neutrophils, the immune cells that fight bacteria, will drop below 500. That's a lot of blood destruction.

So be it.

There will not, however, be a second consolidation round. This next chemo, if everything goes as planned, is the end. We're going straight to transplant from there, and Dr. Strickland expects it to happen before December 31.

When he said that, he added, "What a Christmas present, huh?"

I think he meant it was a terrible Christmas present, as far as the side effects. There is the potential for a lot of them. The chemotherapy leading up to the transplant will be short and intense, completely wiping out my bone marrow and blood system, and then there's the issues involved with my body accommodating the new immune system.

Recovery from the transplant takes three months, and then there's all the potential graft-versus-host issues (see August 4 post).

Of course, we all know it's not really a terrible Christmas present. Yes, on my end, it could get rough. The bottom line, though, is that it is the gift of life, and what can be better than that?

Lol, what can be better than that is dying (Philippians 1:21); however, I don't think that's meant to be, and it's not best for anyone but me, so it's not best at all.

Ok, enough of that. Let me tell you about the biopsy and scary nurses.

Biopsies and Frightening Nurses

When I was told the name of the person who was doing my biopsy today, I thought it was the doctor in charge of my transplant because of where I'd seen her name on paperwork.

It wasn't. It was a nurse, and I'd met her once before.

I'm going to leave her name out because of the start of this story. The end's pretty good, though, so I don't mind telling it.

Also, it's all true.

The first time I met this nurse—let's call her Lisa—was when Dr. Strickland ordered the lesions on my back biopsied. He really wanted to send me to some other clinic (Radiology?), but they couldn't take me on short notice. So he had Lisa do it in the hematology clinic.

She was very sweet. She came in, chattering away, and put her stuff on the computer desk in the room. In the process, she knocked a box of paper clips onto the floor.

"Shoot," she said. "You'd think I'd learn. Those paper clips are always sitting there in the way, and I knock them over every time I come in here!"

She picked up the papers, took two small sections of the lesions on my back with only one mishap, then gathered all her stuff in one large blue napkin-looking thing. As she wrapped it all up, she said, "Ow!"

Something in the wrapped up blue napkin had stuck her.

No problem, she threw it all away, and we left.

Vanderbilt has a really nice service, which is valet parking. It's free. You just drive up to the front, take a ticket from the service guy (or gal), and they park your car, then return it later when you give them your ticket.

We went downstairs, waited for them to get the car, got the doors open, and ... my cell phone rang. I answered it standing outside the car with the door already opened.

It was Lisa, the nurse.

She asked if we could come back upstairs, and she didn't say why. Generally, I'm a pretty compliant guy. I just do what I'm told. (People who know me are laughing as they read that last sentence, but don't pay any attention to them. At least in situations like this, what I just said is true.)

We went upstairs, and Lisa met us at the elevator. She was terribly embarrassed. She explained that she told Dr. Strickland about how she got pricked with something when she was wrapping up, and he ordered her to stick to protocol.

Protocol, apparently, is to take blood from the patient and make sure he or she has no infectious diseases.

As I said, she was terribly embarrassed, and she chattered all the way in about how this never happens, and she's so sorry that we had to come back.

They drew the blood, testing only for hepatitis because they had tested for just about everything else in the process of diagnosing my leukemia, and then everything was okay.

We left the building, feeling a sense of peace settle over us which had been missing since the phone call downstairs. As we did, I laughed, and I told my wife, "Do you think that lady is Don Knotts' sister?"

We saw her again a week or two later, and I can't remember what happened. I just remember telling my wife, "See, I told you. That's Don Knotts' sister!"

That was all very funny until today.

Today, she came walking into the room as I was laying with my shorts about as low on my rear end as is fashionable in younger circles nowadays. ("Sagging," as I heard a younger friend of mine once say.)

She was the biopsy practitioner.

She would be taking a tiny hand drill, poking a hole in my pelvis, drawing out a couple very large syringes of marrow, then yanking a tiny bone core out.

They took my blood pressure, and it was 15 points higher than it had been an hour earlier. I tried to relax.

I thought back to Dr. Lammers, who is over six foot tall and surely approaches 200 pounds, leaning over my pelvis, trying to get through my bone. Then I looked at Lisa, who is no more than about 130 pounds. How was she going to do it?

Dr. Lammers prepares for biopsy

"I'm surprised they don't provide y'all with a power drill," I said. "It would make this job easier."

"They do!" She retorted. "But do you really want us operating a power drill over your pelvis?"

Then she added. "You know, my husband won't even let me use a power drill in my garage. You certainly don't want me using one on you!"

She started laughing. I started my Lamaze breathing.

Don Knotts' sister.

At least she didn't actually have the power drill.

The surprise? The only thing I felt was the first shot of Lidocaine. I didn't feel any of the other shots. She never leaned over once. I never felt much pressure on my hip at all. She got through the bone in less than half the time that either Dr. Lammers or Dr. Vesh (back in Corinth, MS) had done. She got marrow on the first try. It took Dr. Lammers two tries, and Dr. Vesh never got any.

When she got done, she said, "Tell Dr. Lammers he's a wimp. I'm stronger than he is."

I told her, "He's going to feel great. First, Dr. Strickland wants me to make sure and tell people that he's more handsome than Dr. Lammers, and now you want me to tell him you're stronger than he is."

Dr. Strickland on left; Dr. Lammers on right

She laughed. Then she said it was probably just luck.

Maybe, but as for me, I take back the comments about Don Knotts' sister. Even now, 4 hours later, my pelvis is not even sore. For now, she's unparalleled; queen of her class.

August 29: Starting Next Round and Important Prayer Request.

We're back in Nashville. We officially moved into our apartment, which is provided for free by the American Cancer Society ... uh, or some other cancer support group. My daughter keeps saying it's not the ACS.

We'll be in this apartment for a few months, till the recovery period from the transplant is over.

Today we went back to appointments. I had a PET Scan today, and I will see Dr. Strickland and possible also Dr. Goebel, who's in charge of my transplant, tomorrow. After that, I get a marrow biopsy. Then I'm off for a week until Tuesday, September 6.

On the 6th I'll start the "consolidation" round of chemotherapy. I'll be given chemo morning and night on Tuesday, Thursday, and Saturday. I think the night time session is scheduled to end around 11 pm each of those days.

That's late, but, hey, at least it's outpatient.

In between, I'm going to Florida for a house church conference. We're really looking forward to meeting some people and learning some things. There are 5 couples from Rose Creek Village going. Since we're leaving from Nashville, we'll meet up with the others in Macon, Georgia on Thursday night.

So that's my news, but you really need to hear Jerry's news. The things that happen to him are unbelievable ...

Prayer Request

Remember how in the hospital Jerry's heart rate dropped from the 70's down into the 40's and stayed there? It almost stopped his second attempt to put his leukemia in remission, but thank God (and your prayers) that things worked out, which is amazing.

Today he called. He was in great spirits, but the news he got around to giving me was chilling.

His brother's heart rate jumped from the 70's to the low 100's ... and stayed there.

Good grief.

Apparently, the cause is a damaged nerve in his chest somewhere. He has an appointment in a couple weeks where they are going to stop his heart, burn the nerve (somehow healing it), and then restart his heart.

Real safe, huh?

With this operation, two lives are on the line. Dump is Jerry's brother, and he's also Jerry's marrow donor. Jerry's heart hasn't been good for a long time. He had a heart attack a few years ago. He doesn't need the trouble that will come from having a mismatched donor, and his brother is a perfect match.

This should really have gone before my news, I think.

Thank you for your prayers.