The Other Shoe

So, there I was; cruising along with CLL, with no symptoms keeping me from living a normal life. I saw Dr. Tarantolo quarterly, and everything seemed fine. I was exercising regularly and felt pretty good.

When I went in for my yearly physical back in 2009, my primary doctor suggested I see a nephrologist. My creatinine was higher than normal, so it wouldn't hurt to see a kidney doctor. Enter Dr. James Frock. I began seeing Dr. Frock quarterly too, and he began educating me on my kidney function. He had me get a kidney biopsy, so we could see what was happening to cause my creatinine to be so high.

Initially, both doctors thought the CLL was impacting my kidneys. This would've been odd, but not unheard of. By November, Dr. Tarantolo and I were talking about treatment for my CLL. The goal was to stop the CLL from causing further damage to my kidneys. Even though there were no other manifestations of the CLL (I was still a stage zero), we decided it was time to go into treatment mode. I would need a port.

Up to this point, I was updating my family as things happened with my leukemia. Since there wasn't much going on with it, I often went months without talking about it. When we all got together for Thanksgiving, I brought my family up to date on what was happening. I think I was the downer of the day, but I was truly excited about getting treatment, because it meant we were taking action. After three years of monitoring this situation, we were moving forward with a plan. I was looking forward to this.

Dr. Tarantolo wanted me to have a PET scan prior to starting treatment, so he would have before and after pictures to determine the effectiveness of the treatments I would receive.

This is as good a time as any to pause and write a few words about Blue Cross Blue Shield of Nebraska, the insurance I had from work. In general, they have been good for me. I never experienced any problems with them that you sometimes hear from people. This was another area in which I felt lucky.

My luck ran into a little hiccup when Dr. Tarantolo asked for the PET scan. It was rejected. BCBS didn't have a problem with me having the scan, you understand. They just weren't going to pay for it. Apparently, their experts felt that having the scan before treatment was investigative, and as a result, not necessary. That was true in a way. We were going to start the treatments with or without the PET scan. All we wanted was a before picture to compare my post-treatment PET scan to. It made sense to everyone but BCBS.

While all this back and forth was going on with the insurance company, I went in to have a port placed in my chest between Christmas and New Years. That went well, and I was ready to go in for my first treatment after the first of the year.

The goal was to rid my body of the leukemia that was keeping my white blood cells from leaving my system as they died off. It was also important for my kidneys to show some improvement from this treatment. I was scheduled for 10 weeks of Rituxan, a drug that goes directly to the leukemia and knocks it out. Compared to a chemo drug, Rituxan is easier on a person's body than traditional chemotherapy. Another lucky break for me. I went to the first treatment with a blanket, a book, my iPod, and some nervousness about what to expect.

Since treatment would take several hours to administer, Dr. Tarantolo suggested I get my treatment at the Midwest Cancer Center. I had previously been seeing him at an office next to Bergan, but he told me the treatment area was kind of depressing. Midwest was a new facility with lots of windows, and a much more upbeat environment. That sounded good to me, so it was off to my first treatment.