Try as I might

Good Afternoon All:

This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.

My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.

The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.

This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.

I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?

I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.

This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.

So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.

So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.

As always, thanks for reading.

--Russ.