03/31/09 – Why can’t things be simple?

Today we went down to La Jolla for blood work, IVIG and a visit with Dr. Kipps. The IVIG infusion was no problem as usual and for the most part the visit with Dr. Kipps was fine. The blood test results were good and not so good. My hemoglobin and platelets both remain at a good level. However, my white count has risen from 17,000 to 38,000. My lymph nodes and spleen are about the same size as last month, which is good news. So the question that Dr. Kipps pondered was why my WBC went up so much in a month, and yet none of the other markers / indicators had changed. So, he wants to once again wait a month and see what happens next. End of short report.

Dr. Kipps did feel that I may be fighting off an infection. The white blood cells are made up of a number of different components, one of which are the neutrophils which are the most abundant type of white blood cells found in humans and form an essential part of the immune system. In patients with leukemia the neutrophils can be low, but in my case today, they were high. He felt that one reason why my total white count was higher was because my body was fighting an infection, and in fact, I have felt like I have been getting a cold for a day or so. He decided to let me do my monthly IVIG in late April, and if the numbers are holding steady, not see him until late May.

Dr. Kipps once again discussed staying ahead of the treatment game by getting a list of possible treatments in place for me. He discussed with us 3 different possibilities that I may be a candidate for. One of the options is a Clinical Trial of a new drug that they are testing.

I am continuing to play golf as much as I can and we are still traveling as much as we can.

My Dad continues to regain the strength he lost in the hospital. He is taking longer walks, driving places and playing tunes on his organ. We are thankful for his continued recovery.

So, once again I am on this month to month watch and wait. Don't get me wrong. I am grateful for feeling good right now, but you feel like there is this constant threat of something going wrong, and you never know when that might happen. It kind of feels like a Twilight Zone episode.

Terry

03/04/09 – An Ongoing Saga

Well, it has been a while since my last update and that is because nothing much was really happening until yesterday. Since my last update I have had two IVIG infusions with no consequences. Yesterday after my IVIG infusion I did have an appointment with Dr. Kipps, and it was the first time I had seen him since December. I had my normal blood work drawn and he gave me the results after my physical exam. My white count only went up slightly, from 17.4 to 17.8, my Red Count was still in the 15's and my platelets actually went up a little. So that was the good news. However, after my physical exam he noted that my lymph nodes (in various places) and my spleen have increased slightly in size. He indicated that he didn't like that change and it probably means that the CLL cells are on the move again. He wants to see me in 6 weeks to see if there have been any changes in that period of time. At that time he will decide if I should begin another treatment. As I already knew, it is not a matter of if I need treatment, but when it should be initiated. When I asked him what he had in mind, he gave the normal answer, 'it depends'. He wants to study all of my genetic markers from my last bone marrow biopsy, and also look at some other blood test results to try to figure out which treatments I would respond the best to. He really wants to be ready for this so he can begin treatment when I am still feeling well. The great thing is that when I get to the point of treatment I WILL have a plan and it will be proactive instead of reactive. He did say that if I needed treatment after my next visit he would like to begin late spring or early summer. I do know that most of the treatments that he is considering are much harsher than what I have had so far. So the waiting continues. It seems I go on like this month to month. It is a hard way to live your life, but as they say, I guess it beats the alternative.

On a more exciting note, our oldest daughter Aimee got her transfer from Orlando to Los Angeles (she works for Delta Airlines). So last week, she and her boyfriend drove across county in a 26' truck towing her car. After unloading most of the stuff (thanks to Greg, Jeff and Kristen) in a storage unit, she has settled back in the HB homestead after being gone for over 10 years. We will see how we all get along, but it should be fine.

A short update on my Dad. He is still slowly progressing towards a complete recovery. He is able to get around using just a cane (don't stand in his way), and he is slowly regaining his strength. We went up and visited him in mid February and unfortunately he had a stomach bug of some sort while we were there, so it wasn't the best of times for him, but it was really great to spend some time with my dad and his wife Lois, and my sister Rebecca and her partner Cherese. We also got to see a lot of Matt while we were up there, so it was a pretty good visit.

Not knowing what the future may hold for me in the way of potential treatments, we are taking advantage of the time that I am feeling good. We spent some time in the Desert in February, as well as some time in Seattle. In March we are going back to Palm Desert for about a week, and then on to Carmel for 4 days, and home by way of Fresno to see my aunts. Unfortunately I am also trying to schedule my cataract surgery for some time in April. It seems that the steroid treatment that I was on helped accelerate my cataracts. My right eye is especially bad, and I have to get it done sooner than later.

All for now

Terry