Third Infusion Complete

It went as well as the second one. The only noticeable side effect so far is extreme fatigue for three days. Although the first two days after this infusion weren't too bad, it sure caught up with me yesterday, the third day. Today, I've had more energy. And some of the fatigue could be the effects of tapering off the steroids.

Dr. Keating seemed pleased about the "progress." Personally I don't see much progress. But the big node under my right arm is somewhat smaller and noticeably harder. He convinced me that no new nodes was good (well, duh) and the fact that the node under the arm was hard indicated the disease was probably killed there and the node is just full of fibrous structure. I've learned to take Dr. Keating with a grain of salt because he could sell ice to an eskimo. So selling hope to a cancer patient is something he's good at. But I have an ace in the hole -- his nurse, Alice. Alice doesn't sugar coat her answers to direct questions nor does she hide her reactions. So I glanced at her quickly when he gave me his assessment. And, lo and behold, her countenance showed good news, too. So I bought the story. Done deal. Good news.

Now don't get me wrong. I really like Dr. Keating and I respect his opinion. It's just that he could convince a dying man that he was going to be in good enough shape to go sky diving next week. So it pays to be a little cynical.

My eyes seem to be getting better. I don't know if they really are or the steroid drops and ointment are just relieving the symptoms. At least I can go outside if I'm not in the direct sunlight. The GvHD in all the other areas seems to be gone.

I will start a second cycle of the Sunesis drug next month. A cycle consists of three weekly infusions just like I just had. They give you every fourth week off. They will give you up to six cycles of infusions. I don't know what the longer term effects on the white count are. But it has dropped my white count and neutrophil count, so I have to be careful about being around crowds. Makes me nervous to get on a plane, but I wear my respirator mask and have had no problems yet. Heck I flew all the time in the early years of treatment with no counts and no mask either. So this isn't any different I guess.

On a sad note, my friend, John Slatin, passed away this past week. I met John and his untiring wife, Anna, while John and I were both getting our stem cell transplants in September of 2006.

John was always a great example of strength and courage. He went blind in his early twenties due to a degenerative eye disease. I believe his brother did too at the same age. John went on to get his PhD. from Johns Hopkins and was a professor at the University of Texas when I met him on the transplant floor.

Before we met, he developed CLL which went to his central nervous system and to his brain. He went through chemotherapy, chemotherapy to his nervous system which entailed spinal taps every few months, and radiation treatment to his brain. Then when the CLL came back he turned to a stem cell transplant. My apologies for such a condensed version of a great life.

It looked like he was progressing pretty well for a year or so after the transplant, making frequent trips from Austin to Houston for check ups. But a few months ago he began to have some speech and hearing problems which was traced back to a spot on his brain. His speech and motor skills began to slip while the doctors debated a brain biopsy. In the meantime they put John on various medications and eventually infusions of anti fungal medicines since the medical concensus was that he had an infection and not a recurrence of leukemia in the brain. After a few weeks he was still slipping, so they went ahead with the brain biopsy. It showed damage from his previous radiation treatment despite the fact that he had received half of the exposure that causes these "flashback" problems. But the tissue continued to deteriorate. John got pneumonia and died. If you want to read more about John please go his blog at http://leukemialetters.blogspot.com.

I'll miss him, Anna, and Dillon.