Monday, February 6, 2012

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!


  1. That made me laugh...sausage-hot-dog for the win! :) (I LOVE hot dogs, but don't tell anyone.)

    Let us know when we should send you some more food from home. We have a cooler-full whenever you guys need it.

  2. Loved your blog. It made me smile. I don't know if you realized it but when you made mention of not wanting the graft vs host disease to get "out of hand" you posted the picture of "your hand" right beside it...I laughed and wondered if you had purposely done that. :)

    Love and miss you guys!!
    Love, Mala