June 25, 2004

Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

"A friend loves at all times, and a brother is born for adversity."
Proverbs 17:17

My longtime friend and roommate from college, Dave, flew in from South Dakota this past Wednesday to spend a week with me and to be my caregiver and be a support in winning the battle over my cancer. Dave will take over for Michelle, allowing her to take the boys to Spokane. The boys are all competing in Hoopfest, a huge three on three street basketball tournament we go to every year.

Special thanks to Ken Bone, a good friend of the family, who also coaches basketball at the University of Washington. Ken stopped by and dropped off some ankle braces for CJ. CJ needed braces for the Hoopfest Tournament. The braces are Nate Robinson's old ones (Nate is one of the star players for the Huskies). CJ will not only have stable ankles, but I'm sure he'll be pretty excited about wearing Nate's braces. We'll see if they give him Nate's game too.

I got a pretty cool surprise from my Trojan Digital Media students and the teacher filling in for me back at school. They used some of the funds raised from the film festival they had in my honor and gave me an iPod. This little device can hold up to 10,000 songs and has incredible sound. It will be so fun to have music with me wherever I go, especially on those long days at the clinic when I need a distraction. I love listening to Christian Music, for it really uplifts me. Now I can listen to it anywhere. Thanks so much you guys. What a special gift.

Thursday was my weekly clinic at SCCA. My blood counts and blood chemistries all look good. Dr. Storbe did examine the small areas of swelling at the base of my neck. He feels it is just some fluid retention resulting from the drug Prednisone. Earlier in the week I had an ultrasound to be sure the swelling wasn't a result of a clot around my Hickman Line. The ultrasound came up negative for any clotting. The Hickman is working just fine. The swelling will most probably go away once I'm off the Prednisone. I finished up the clinic visit with my nutritionist and I continue to be doing extremely well keeping all my nutrient levels where they need to be. What really surprised my nutritionist was that I've gained five pounds over the past week. Perhaps as the Prednisone tapers down, my muscle tissue is building slightly. I continue to work out in the weight room every other day and walk at least one hour a day. I know this really helps how I feel and it reduces the negative effects of the Prednisone and other drugs. Most importantly, it helps me mentally to be active.

As you can see from the pictures, Dave has been working hard as my caregiver. He's doing everything from driving me to clinic, cleaning, cooking, and more. The other day we were restocking my medications, which I have to do every week. Currently, I take 62 pills a day at 6 different times a day, which totals 454 pills a week. It is quite a job making sure I take all the right dosages of all the different pills, all at the right times. I have three different ways of reminding myself of which medications to take. I have a regularly updated med schedule I make on my computer and post on the refrigerator. I also have my med schedule in my PDA and it alarms at all the med times telling me what to take. Finally, I have a calendar program on my computer that gives me pop up reminders, accompanied by an alarm, telling me it is time to take medications and which medications and doses to take. All these reminders have to be continually updated as my dosages continually change based on my blood chemistries. I will have to be on most of these medications for at least 180 days, but more than likely it will be a lot longer. It is all worth it, however, to be cured of my CLL.

My next major test is next Wednesday. I will be having my Day 56 Bone Marrow draw on that day. Please be praying for this upcoming test and that my results continue to show a successful engraftment of the donor cells and a decrease in Leukemia cells. Thank you to everyone for your continued love, support, and prayers. You make such a difference.

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