I'm Back

Here it is January 28 and I haven't posted since December on Day 100. It's Sunday morning and Lynda is still asleep. I can't stay awake at night, but I still get up early most every day. Lynda is sort of the opposite.

I am suppose to avoid crowds since I have the immune system of an infant, but possibly even more susceptible to bugs. So I am not suppose to go to church, ball games, etc. We do get out to eat but avoid the crowded places and times. I still can't have anything that's not cooked, especially in a restaurant, so no salads, fruits, vegetables, nuts, and garnishes that aren't cooked. You would be surprised how difficult that is. Almost all dishes have garnish. I am still not good at remembering to tell the waiters to leave it off. We miss church and our friends there.

The count of the number of days is a moot exercise now, since Day 100 is long gone and I am still in the BMT process. But life is good anyway.

I got the second DLI (donor lymphocyte infusion) two and a half weeks ago. So far there isn't any big noticeable change. Although the blood work last week looked a little stronger. The red counts continue to improve and the neutrophil count stayed up much better last week. Neutrophils are a component of the white blood cells. They are the first line of defense against an infection, sort of like the EMT's that show up in the ambulance after a wreck. The neutrophil count has to stay up in order for the body to mount an adequate defense against infection. When the neutrophil count is low it can be stimulated with Neupogen, an injectable drug. After the chemo and the transplant my neutrophil count just couldn't stay up, so I've been giving myself Neupogen shots every week. That's after my weekly bloodwork to check things.

So, on the positive front, the blood counts are getting better and the nodes in the neck look and feel like they may be getting a little smaller and a little softer. I don't think I have any GvHD, but I do have dry scaly skin on my chest, arms, and shoulders - all the places where skin related GvHD would show up. But the dry skin doesn't match the description of the rash you would get with GvHD, so I doubt that it is GvHD.

The second DLI was a breeze. The bag of 10 million lymphocytes looks like a little baggy with a little blood in it. If you got a sandwich bag and put a little red water in it so that it just barely bulges out you would have what looks like a bag of lymphocytes or blood.

The PETscan and CT scan and bone marrow aspiration are all standard procedures at this point, so they weren't too bad. Those are never really enjoyable but they're nothing that I get too excited about any more. The technology of these tests is still pretty cool to me, though. In the PETscan, they inject you with radioactive glucose and then run you through what looks similar to an MRI machine. Cancer cells absorb glucose at a faster rate than normal cells, so in a PETscan they are simply measuring, and taking a picture of, what parts of you "glow" more than other parts after the radioactive glucose is absorbed. Pretty cool.

I talked to two of my BMT buds last week, John in Austin, Texas and Terry in Erie, PA. John is doing remarkably well while Terry is snow bound. You probably saw the big wreck in Erie on the news this week. White out conditions caused a 50+ vehicle wreck on the interstate close to Erie. I had dinner with John and Anna at my favorite Houston restaurant, Prego, a couple of weeks ago. Very enjoyable.

It's remarkable the people that you meet at MD. Terry told me about a guy we met there, Larry Stewart, who turned out to be the "Secret Santa" from Kansas City. He gave away a couple of million dollars over the last few years. CNN did a piece on him recently. Unfortunately Larry passed away from his cancer just this month. Terry knew Larry better than I did, but I enjoyed talking to him about KC steaks and barbecue and the Royals. You could tell he was something of a character.

I met Merlin and Janie Cohen from Arizona a couple of years ago and have enjoyed getting to know them, too. Merlin is a dentist turned sculptor. Check out his website at www.merlincohen.com. Merlin, Terry, and I hung out together this past summer while Janie was in the hospital and Terry and I were trying to get through the preliminary festivities of the bone marrow transplant.

Everybody is in the same boat at MD, so it's real easy to get know people there - most people want to talk. Quite a few of them will turn out to be friends for life. There are blessings in everything I guess.

Time to get off the computer. I'll be better at blogging in the future.

I go back to MD for the third DLI in late February.