May 24, 2004

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

Keep your face to the sunshine and you cannot see the shadows. Helen Keller

Though pretty fatigued, I had a good day today.

I did have one of those days today where I let my mind and spirits get me down a bit. Gotta watch those. I was groveling some due to the fatigue and doing my share of complaining over this and that. I do need prayers for sleep. I don't sleep very well at night. I need the rest, but my mind tends to wander all over the place and it's tough for me to wind down to rest. Part of the cycle my mind will go through I am sure as I work through the long recovery process.

I had a short, but good visit to the clinic today. It was nice not to have had to go to the clinic at all this past weekend. Having the weekend break was great mental recovery time. Once at the clinic, my morning started with some blood work. My results are showing very positive results. My hematocrit level is up to 34, my WBC count is at 3,000, and my Platelets are at 102,000. It appears my bone marrow factory is improving everyday. I am still a little on the neutropenic side (immune system weak) as I wait for my neutrophils to improve. I am at about 500 as far as neutrophils go and that's pretty good considering I'm at Day 14. (Day 14 is 14 days after I received my donor cells).

 

After my blood work it was off to clinic with my blue team doctors and nurse. We went over my blood work, did a physical exam, and everything looks really good. My attending physician is still concerned by the redness of my skin, which may be a result of some GVHD. It is important to monitor GVHD (Graft versus Host Disease) because if it gets out of control it can make you pretty sick. Tests from my first skin biopsy back in the hospital showed negative for GVHD. This is sometimes common when GVHD first presents itself. I did have the rash and skin redness to support a GVHD diagnosis, but the lab results of my biopsy proved negative.

 

 

 

So, to be on the safe side, the doctor asked my nurse to take another skin biopsy (remove a small piece of skin with a sharp knife) to run another test for any signs of GVHD. I may have looked a bit uneasy, but the procedure was painless. We should find out the results in a couple days. If no GVHD is currently present than they will reduce the GVHD controlling steroid, Prednisone. I am hoping for a negative biopsy result so I can have a break from the Prednisone.

My first major test of my progress so far will occur on Day 28. Doctors will conduct a bone marrow biopsy to determine a couple different things. First, what percent of my marrow is donor marrow and how much is still mine. They refer to this as determining the chimerism of my marrow. (how much donor, how much host). There should be a significant amount of donor cells engrafted and doing their job by Day 28 and this will be a way to confirm exactly where we are. It will take awhile for all of my marrow to disappear, but they just want to monitor the progress at this time. Second, they will be checking for CLL cells present in my marrow. The goal would be to see a significant decrease in CLL cells. However, it is expected that some CLL will still be present. It may take up to a year for the donor cells to completely eradicate all the CLL cells. This process by which the donor cells kill the CLL cells is called GVL (Graft Versus Leukemia Effect). We definitely want this effect. If I get good GVL, then I have an excellent chance of being cured of my disease. We are definitely praying for this miracle. Amen!

No visits to the clinic tomorrow. Michelle and I have the day free. I'll probably rest, exercise, and just enjoy the day.

Leave you with some lyrics from a favorite Jars of Clay song of mine called
'Thrive':

"Will you lift me up with tender care?
Will you wash me clean in the palm of your hands?
Will you hold me close so I can thrive?
When you touch me, that's when I know I'm alive."

Don't just SURVIVE-THRIVE!

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