Day 26: The Same But with a Few White Blood Cells

My WBC count got to 0.2 yesterday. It stayed there today! Yippee!

Okay, that's all the energy I have for today, I'm going to bed.

I've had lots of visitors today and yesterday. Mostly I watched them rather than interacted with them because I didn't have enough energy. They all said it was great to see me, anyway. I raised really good kids. (Count your many blessings, count them one by one.)

In an effort to save me from how horribly depressed I look, the doctors suggested I walk around the hospital. We even crossed an outside section to get to the children's hospital, which I was told is much more colorful than the adult hospital. That's true.

There's no good way to put a coat over my tubes, so I wore a shawl and my wife slung a blanket over my back. They also wrapped a scarf around my neck, thus ensuring I wouldn't fact any sun, either. I wore a pair of gloves, and I wore a huge, hang-down hat that didn't allow any sun on my face or cheeks, either. I had ordered that hat just for that purpose.

In order to make my little video so that all of you could see it, I had to load it to youtube rather than blogger. Loading it to blogger doesn't always do the job, for some reason. In the process, I ran across this video from a lady who got a bone marrow transplant in 2008. What I want to know is why she was allowed at the beach four days after she got her central line placed!

I'll tell you, too, I saw the following video before I saw that one, and I cried and cried. I understand these people's feelings, and it was so great to see them returning to their lives.

As for me, my stomach is constantly upset. Nothing I eat tastes good, and everything I eat is forced. I prayed about it, and God gave me a little cartoon picture to look at in my mind when I eat, which I am not going to share with you. It's just a silly cartoon, but it helps with both ignoring the taste and with the fear of throwing up everything I eat.

My attitude is blah, blah, blah.

Otherwise, everything is fine. I have no good reason to have a blah, blah, blah attitude, so I try to ignore it best I can. I sleep a lot, but that's probably from having no real nutrition to work with. (Sorry, Michael, I could only drink a quarter of the last Ensure I tried.)

What's exciting is that Dr. Engelhardt thinks that my stomach problem may be graft vs. host. That would be a really good sign, and eventually they'd give me a steroid pill that would cure the problem. I would love to have a settled stomach, that would be awesome. But for now, we just have to watch and wait.

Sometimes stomach GVH heals on its own. Sigh ...

The sun is shining. Nashville is beautiful today. My son is going to California for computer training, and then he's coming back to get married in April. I have another son being a strong adult working through the difficult decision of how and when to move out to California to be closer to a girl with whom he's developed a serious relationship. My children are giving me every reason to be delighted that they are wise and know how to make godly choices. So underneath the blah are a hundred reasons to rejoice and cry.

Thanks to all of you who are sharing this journey with you. For those of you coming behind, this is the worst part for me. It's the hardest work to choose positive things, and there's the least energy for the work.

Thank God for friends and family who love me and visit me, and for my wife, who never gets tired of me.

Day 24: Everything's THE SAME!

People are being really nice to me because they can see how dragged down I am. I'm trying to be cheerful, but there's just no energy. If I stop for a moment, I fall asleep. On the other hand, the sleep I get is much better than the sleep I've gotten any of the rest of the time I've been in here.

Nothing changes day by day. My white blood cell counts stay the same, and my red blood cell counts vary only a little. I need platelets pretty much every day, and we just wait for counts to come up.

Falling asleep on the side of my bed

I don't want to eat at all, so they've given me a chart to track my calories on. If I don't eat enough, they're going to put me back on IV nutrition. As a result, I ate my oatmeal at breakfast, drank my milk, and drank some juice. I don't know what I'll be trudging through for lunch. I'd rather just not eat.

They're going to try to let me walk the hospital some this weekend just to get me some space and a cheerier attitude. I must look pretty depressed. I really don't mean to be that way. I can't say I'm depressed. I'm just tired, and I don't want to eat.

I walked twice today anyway. It's not that hard to force myself to walk. The bottom of my feet aren't hurting anymore, so it's easy to do. It doesn't really bring any energy, though.

I'm also continuing to get the blogs done, even the Through the Bible in a Year blog, so that's good. Technical difficulties meant I couldn't post this morning's blog until about 8 or 9 am, but otherwise, I've managed to stay on it, which is encouraging.

Hopefully, I'll have some more energetic pictures to post over the next few days.

Day 22: Count Your Many Blessings

There's really nothing new to report. Everything's the same. My counts haven't come up, most of my rashes are gone, and we are just waiting for my stomach to start wanting food and a couple small rashes to fade away.

I slept a really long time last night, but in segments. Between trips to the bathroom—I have to suppose I still have a bit of a bladder infection—and medicine and vitals, I only sleep 1-2 hours at most. Each time I woke up, however, I was more depressed.

So when the nurse came in this morning and asked how I felt, I told her I felt terrible. I told her there was nothing wrong, I just felt terrible. Everything I put in my mouth tasted like my mouth, and my mouth tastes blah.

The nurse told me I was probably entitled to one blah day.

So I laid down, and I heard that song in my mind: "Count Your Many Blessings; Count Them One by One."

So I did, beginning with my children and my wife, I started counting my blessings, and I immediately started crying. My wife, who had just heard me talking with the nurse, asked what was wrong and came and laid down in the bed next to me. Once I got my voice I told her what I was thinking. We just laid there, and I recounted in my mind all the wonderful adventures I've gotten to live on this earth.

I've never been all that good a person. I've had problems with addictions, and, as a younger man, with a temper that was dangerous. But since the day I met Christ, I've believed that if I turned my life over to him, what he would produce would be far better than anything I could have hoped for. So I've walked away from my own hopes, dreams, and my own use of time, to pursue whatever I believed he was putting in front of me to do.

Boy, has that paid off!

He let me find the church. He let me live with people who helped me deal with my anger. He showed me the problems with my ideas of righteousness, and I watched as he taught us as a church to learn his righteousness, a righteousness based in love, understanding, and an ability to make a difference in a person's life.

I have a lot to give thanks for. My depression is gone, though I can't say I have any physical energy at the moment.

So, here at Vanderbilt we're hanging out waiting for blood counts to rise, and giving thanks to God for his many blessings.

Day 20: Going Forward

All the really bad things that have to do with the no-immune-system/mucositis phase of the transplant seem to be healing up. My fever's under control. My mouth is almost completely healed of sores. Hemorrhoids are minimal. All the old rashes seem under control or gone, and the spot that looks like a boil, but can't be, shrinks every day. Even the urinary tract infection seems to be symptomless now, though I'm still taking medicine for it.

They took me off TPN (Total Parental Nutrition) about four days ago. I have no baseline pain medication, though I did ask for oxycodon twice yesterday to deal with some new pains coming up.

I'm making the switch from the problem being that I have no immune system to the problem being that I have a new, foreign immune system.

That's a good thing.

Some of the Old Problems

Right forearm after biopsy for my first rash

Different view of the right forearm rash biopsy

Right chest and shoulder after Hickman Catheter was infected and removed

Bruises on my belly from the insulin shots

This was the shot no one liked. After numerous dry heaves one morning, my eyeball just sort of gave out and oozed gel all over except the iris. Combined with the rash on my face, it's a gruesome picture.

Hopefully this is better. My potassium got high, and so they had me on a heart monitor and oxygen (perhaps they were giving me blood at the same time, I can't remember). We smiled our way through all these things. Between the hospital's pain meds and careful care, and everyone's prayers, this has not been a rough experience ... though it's obviously not been a pretty one, either.

Moving On to the "Easier" Part

My White Blood Cell Count (WBC) has only been as high as 0.2, two days ago, but the fact it reached that high establishes that the stem cells have engrafted in my bone marrow and are making cells. (3.9 to 10.7 is normal for WBC.)

The low counts are not really a problem. The new white blood cells leap to work as soon as they hit the bloodstream, healing where healing is needed and fighting pathogens where that is needed. They are a don't-think-about-yourself, don't-wait-for-backup kind of army, fearless and aggressive.

So most of them pop into the bloodstream, do their job, and die, and we can't measure them.

We can see the effects in healing, though.

Graft-Versus-Host Disease (GVHD)

These cells have been produced from the stem cells of a baby's umbilical cord, donated at birth by the mother. Those stem cells go to my bone marrow, and they become hematopoietic stem cells, which are stem cells that can only become blood cells. As they reproduce and become blood cells, they are becoming blood cells with a different DNA than the rest of my body.

Thus, it is very easy for these new cells to see all my body's cells as the enemy.

Part of that is good. You want the new immune system to hunt down and destroy any lingering leukemia cells there might be, though we have made every effort to burn or poison every one in my body no matter where it might have hidden.

The bad side, of course, is that you don't want the new immune system to hunt down and destroy my organs and useful cells!

In come the doctors, who have become amazingly skilled at this. They put that new immune system on a leash with immunosuppressive drugs starting even before the transplant. (This also prevents any remaining old-immune-system cells, if there are any, from attacking the new stem cells, thus helping engraftment.)

They then monitor drug levels and your responses, giving the new immune system more and more freedom, just bit by bit, until they see GVHD rise up. When they start seeing GVHD, then they suppress the immune system a bit more and take care of whatever GVHD symptoms arose.

The most common forms of GVHD are in the gut and on the skin. Intestinal cramping and pain or rashes are the most common symptoms, although they do check for other causes of both.

Over the last couple days, my heels have started burning, almost like they're blistered. I assumed it was walking too much in the wrong shoes, but when I told the doctor he asked to see my palms. I showed him, and he said, "Okay. We'll keep an eye on it."

Apparently, burning in the soles of your foot and the palms of your hands is a common GVHD symptom.

Again, you want some of that. It lets you know the new system is working. It's just that you don't want it to get out of hand.

I also got a new rash yesterday, worse on my right hand than on my left, that makes it look like I'm wearing a glove. My ears are pretty red, too. I'm waiting for them to declare any of those to be GVHD, but a couple nurses have told me about "Cytarabine Radiation Recall." Apparently that's a delayed reaction to Cytarabine, a chemotherapy I haven't had in about three months, or radiation, which I got at the beginning of January.

So, we'll see!

The biggest difficulty of the last two days has been trying to eat after they got me off the TPN, the IV nutrition. I was on it for six days or so, and I couldn't figure out how to ease back into eating. Even a small meal filled me for hours, and not pleasantly so.

Yesterday seemed a bit of a breakthrough there.

The dark red ear

The Miracle Hot Dog

Yesterday was Super Bowl Sunday, so 11 North (the hematology oncology floor) had a little pre-game party. After struggling all morning with wanting to eat anything, I went to their little party and I made a hot dog. At least, I thought I made a hot dog. Actually, I made a sausage ... with ketchup and mustard ... on a white hot dog bun.

I ate two-thirds of it, digested it with no problem or nausea, and my appetite has been improved ever since!

Whew, touchdown!

Day 16: Going Forward

View today from my Vanderbilt window

Well, this is the time to go forward. Things are definitely healing each day rather than growing worse each day. They stopped feeding me by IV last night after about a week on their TBN (Total Body Nutrition.)

The frightening thing about going back to eating is how my body will respond. Indigestion, painful stomach cramps, or diarrhea that causes hemorrhoids to flare up. I've been taken it very carefully: soups with rice or noodles, cooked vegetables (no raw until I have blood counts), and the occasional Ensure™ drink. I don't get full because getting full hurts, and it takes a long time to relieve.

But that's "only" frightening. Taking it careful makes it very likely that my stomach won't experience those things, and the ability of the nurses to manage nausea is almost magical.

A New Beginning!

The really nice thing is that every step forward is a real step forward. That hasn't been true for months. When my blood counts settled back in October after the 2nd round of Chemotherapy, we all knew that was just until next round of chemotherapy. If I made some walking or jogging progress between rounds of chemo, I knew that was conditioning I could not hold onto.

So ever since the transplant, I've been telling the staff in the hallway, when they see me trudging, barely enough energy to push the pole, "I'm training for a 5K!"

It's no longer just exercise to keep the lungs healthy. I get to keep the benefits of the exercise now.

Day zero was a big turnaround. We went from treating leukemia by destroying leukemia cells (and a lot of other cells with them) to managing this new immune system as it grows so that it learns to do its job without burning down the hen house. (In that metaphor, I would be the hen house.)

Moving to an Adult Diaper: Depend

The company is Depend, by the way, not Depends. Here, I have the picture to prove it:

I have to tell you at least a couple humiliating stories.

On some night, at least two nights ago, I woke up needing to go to the bathroom. I went in the bathroom as normal, but I realized that, once I got there, I could not have avoided peeing one second longer.

That made me a little concerned, especially if you know what "racing to the bathroom" means in a hospital on when you're attached to an IV Pole with several pumps.

• Sit all the way up as you get out of bed, but don't stand up in order to make sure I don't pass out.
• Stand up, holding onto something that does not roll, until you know that you are not light-headed.
• Roll IV pole close enough to bathroom door that the tubes will reach through the door and still let me reach the toilet.
• Grab between four and seven tubes that are looped on the IV Pole so as not to drag them on the floor.
• String out the tubes along bathroom doorjamb, then close door on them, making sure they don't overlap and "occlude." You'll get a lot of beeping from the pumps if that happens.
• Only then can you turn from the door to the toilet, and it has to be the right way or you'll wrap yourself in your IV tubes.

Well, as you may be able to guess, it happened ... At night, thank God!

This is the IV Pole and lines I'm talking about.

I got up, did all the things I just described until I was grabbing the lines that I had looped over the IV Pole. They were tangled, and I heard from my body, "Houston, we have a problem!"

I skipped all the other steps. I tore the bathroom door open, and pulled my IV Pole up into the bathroom behind me, leaving the door wide open.

Thank God for pajama bottoms. They were flannel and absorbent. Not a drop reached even knee level, much less the ground, and I made almost no mess at all transferring from filling my pajamas to filling the toilet. I then rolled up the underwear in the pajama bottoms, put them in the dirty clothes, then used wipes to get the tiny mess I left.

I got off easy, but I was taking no more chances.

I called the nurse for an adult diaper.

It's so sweet how these beautiful, young ladies—for that is what most of these nurses are—have the ability to casually tell you that yes, they do have an adult diaper, and they will get one for you. No giggles or anything. (The rest of the nurses, the ones that aren't beautiful young ladies, are either men or beautiful, but not young, women.)

Over the course of the next few hours, I found out that as soon as I started walking toward the bathroom, I would lose all continence.

I filled four diapers this way. Waddling to the bathroom to change them is really not that uncomfortable a process. They do a great job of keeping you dry.

Take heart, parents, our kids aren't suffering in their modern, skin-protective diapers.

Ah, but the other part wasn't so easy. I called these diapers because they are diapers; disposable, adult diapers, but diapers nonetheless. After you throw one away, you have to put another on! I put the first one on by myself, but I couldn't get it tight enough to feel good about it. I knew for safety's sake I was going to have to humble myself. My wife was all too delighted to change my diaper for me, the perfect blend of exceptional graciousness and twinkle in the eye.

The next night we resolved that. By providing a urinal at the bed that can be emptied easily. I don't have to walk to go now.

We also resolved the diaper change issue by buying Depend™ Pull-Ups. I'm a big boy now!

They think this is caused by a urinary tract infection, which hopefully is being treated by a medicine they are giving me. The incontinence has diminished. There was also a little blood, which alarms people but happens with most bladder infections. That's diminished quite a bit. Finally, there was tissue, skin tissue, like what you'd peel off your shoulder after a sunburn, that I was passing. That's gone.

This urinary infection and the pseudo-boil on my right arm are probably what we're watching most. Everything else is healing rapidly, and even those two seem to be healing day by day.

A Spiritual Lesson on Humility

It doesn't matter how often I teach walking by the Spirit, I eventually start substituting good things for spiritual things. I was working hard at keeping up on the Through the Bible in a Year Commentaries, but I ended up, one more time, getting my eyes on my duties rather than on God.

Last week a friend asked me for three prayer requests for their prayer team. Immediately, I typed, "#1, that I can keep blogging!"

I then thought about the things that would be more normal prayer requests in my situations. I told her that #2 is protection from fevers, and #3 is protections from mucositis and all its complications.

Then I realized the most imporant one of all at the moment, which is that the new stem cells engraft in my bones.

I felt somewhat proud about choosing to make some tiring, spiritual service in something I'm sure God has told me to do. The feedback from those who read the Through the Bible in a Year blog is incredible. I've gotten some of the best letters from that particular enedeavor versus all other's I've done, and it's only a month old!

But this week, I couldn't do it. I made a standard form for each day and let the readers discuss among themselves.

Then God pulled me aside to remind me that there's only one in charge, and I'm not him.

The warm side of that story? I got back out of myself, and started communicating with other patients. Even if it were just a good morning as we passed in the hall or a purposeful attempt to give a few extra seconds. This first day, just since my reenlightenment on the matter, I got in a great discussion this morning with the wife of a patient heading toward transplant. Then another worker came through the room anxious to talk about her life. It was a delight. I gave her one of my books.

There are so many people who live like this all the time. Free in their spirits, following God.

Ministry is always the overflow of fellowship with God. We must never make our ministry "ours." We don't work for God; God works through us. Make your ministry your own, and you will be taking it away from God, not from anyone else.