Sunday, October 14th (Day +557)
It has been nearly a month since the last report. Jackie continues to do well. She has some minor (compared to CLL) GvHD issues. Her skin has thinned on her hands and feet. She has problems with blistering on her feet due to the thinning. The problem is fairly minor and she deals with it easily by wearing socks and comfortable shoes. She definitely has minor GvHD most of the time. It presents as a rash on her forearms. She has also experienced some GvHD in her esophagus, stomach, and gut. This has resulted in about 3-4 episodes of intense (10 on a scale of 1-10) pain in her stomach that radiates to her back. It is controlled by use of large amounts of liquid antacid and oxycodone. Fortunately it only last for about an hour. Onset is very rapid and relief is also rapid.
After her last visit to the Mayo Clinic here prednisone dosage as changed to 5 mg on one day and 15 mg on the second day. The thinking is that on the "off" day her body will produce some of its own steroids to help battle the minor amount of GvHD. Dr. Zent says recent studies of long-term GvHD patients show that most patients improve over time and that GvHD becomes less of a problem. The process can take years, however.
Now the really good news....during her last visit to the Mayo a flow cytometry test was conducted and CLL is undetected at any level!
Some of you must be asking yourself, "Yeah, but how is her life? With these problems how close is she to a 'normal' life?" I am happy to answer that her life is really pretty normal. Yes, she has some problems but they are very manageable! She has returned to work. She is able to do her housework. She actually LOOKS better than she has in 20 years. Through the process she lost a lot of weight (upwards of 100 pounds). That weight has stayed off. Not because she isn't eating, but because her overall metabolism has changed. This may sound strange, but she received stem cells donated by a 29 year old male. Those cells have changed things that defy logic and should be studied! No, she isn't growing male reproductive organs but there are (in my opinion) certain Fountain of Youth properties that are hard to explain. Prior to transplant she could not keep her weight in check. Now it is not a problem. I will say that the cryptic changes I describe are all good in nature! Something takes place that has yet to be investigated by modern science!
We return to the Mayo in another 2 or 3 months.
Bruce & Jackie
From Pryor, OK
PS. As I write this she is out for a brisk walk and she just finished washing 2 cars. Thank God for those male stem cells:)