Updates and Downdates

Shane’s so good about sharing his BYU life with me. I love hearing about his classes, and everything else. He’s appropriately serious about his studies, but he also finds time for fun, and maybe even a prank or two. Ask him what he wore to last week’s dance at the Wilkinson Center, for instance. Another thing about the Washburn guys is that they are prone to fainting when they donate blood. It happened to him yesterday, along with something I’d never heard of, tetany. Tetany is sort of a muscle spasm, I think. I couldn’t find much to read about on it, but he was told that his arm wlifted involuntarily when he was unconscious. It’s so kind of him to donate blood, (goodness knows this family has needed enough of it), but next time he’d best wait till after class to do it. Greg remembers all the available brothers having to take a blood test years ago, when Ethan was found to have a low white blood count. He reminded me that when he fainted, little brother Neil was there to make fun of him. Greg got busy doing something else, and then he heard a gurgling sound, and looked over to see Neil passed out with drool dribbling down his face. Those were the good old days when we knew next to nothing about blood counts! Ethan was sent on his way with a diagnosis of idiopathic neutropenia, or maybe it was idiopathic familial neutropenia, because his brothers’ counts were also low.

Well, my counts are not low. My white blood count was at 66K on Jan. 18th. The FISH results showed that 68% of my cells have the 17p deletion. Not good news at all. The 66K count is somewhat deceiving, because those are the WBC’’s in my peripheral blood. There are a lot more of them hanging out in my lymph nodes and bone marrow, where they’re not as easy to measure or treat. There are also not many tried and true treatments that work well with 17p deleted cells. Most CLL specialists advise clinical trials or a transplant. My local doc is recommending PCR, the same treatment I had 5 years ago. It worked amazingly well for me, it’s true. But then only 36% of my cells had the deletion. Also, after treatment, I still had 30% CLL cells in my bone marrow, and I was told by a specialist that most of those would likely be the resistant 17p deleted ones. With such a big jump in the percentage, I think it proves Dr. Terry Hamblin of Great Britain was correct. I counted on asking him how to proceed when I needed treatment again, but he died on Jan. 8 of abdominal cancer. He was a kind and wonderful man who freely gave of his time to help CLL patients all over the world. He joined our CLLC Friends site to answer our questions, and replied to emails from thousands of patients. It’s doubtful I’d have another good response to PCR, which is not recommended for us 17p folks anyway. So, I’m reading all I can, and asking Heavenly Father for His guidance. I regret that my local oncologist doesn’t have my full confidence, but he is very busy treating all cancers and is not a specialist in any one type, and can’t possibly keep up on all the latest research in so many different areas. We became even more aware of those limitations when he treated Jordan. Good doc, just not a specialist, and very, very busy.

I’m mulling over how much effort I should put into fighting CLL. I would love to share more milestones with my precious family. But I have shared many, and my mortal mission might be said to be complete. So, lots of questions need answers.