Is no news really good news?

Last Tuesday, April 29, was my appointment at Stanford. I see the doctor every 4th Tuesday and since there were 5 Tuesdays in April, I actually had two appointments in the same month. I was most anxious to know my lab results, especially to know if my cancer numbers were continuing to go up or if they would come back down. But I ended up with basically no news. Here’s what happened:

Two weeks before my appointment, I developed a very bad bladder infection. I had a standing order for antibiotics from an urologist I saw last fall. But the three-day treatment barely had any effect. After suffering for several more days thinking the treatment would still kick in, I went to see my primary doctor. She put me on a much stronger antibiotic for 6 days. I immediately had improvement. However, I had just started the second round of antibiotics the day before my Stanford appointment. As a result, the infection skewed my blood counts and several areas on my metabolic panel. Obviously, my white blood count was up due to the infection, but my hemoglobin was back down again. It seems that when I need white blood cells to fight something the red blood cells take a back seat and their numbers go down. The normal functioning cells can only do so much and they try to produce what I need at any given time; consequently, there is fluctuation in their numbers. However, you have to understand that even though these numbers are going up and down, they are still all below normal.

The most important numbers that we watch each month is the cancer count. And wouldn’t you know, the lab tech neglected to send my blood for the special free light chain test that assesses my cancer. I heard this discouraging news late Monday afternoon from my oncology nurse. We’ve been conversing via voice mail over the last few days and haven’t actually had a conversation about all of this.

At my appointment last Tuesday, my doctor gave me “the plan” for the next few months. Since my next appointment would have been the day after Memorial Day, he has decided that I don’t need to come down there to see him. He requested that my primary doctor do a CBC (complete blood count) here locally and fax the results to them. I don’t know if they will go ahead now and ask my primary doctor to order a free light chain test at the end of May or if I will have to wait until my June appointment to know anything further.

My next appointment on June 24 will be at the end of 6 complete cycles of treatment. On that day I will have another bone marrow biopsy (ugh….) and then see the doctor afterward. I don’t know how long it will take for the pathology report to be completed, so am not sure when I will be scheduled to return. When those results are available, he will plan the next phase of my treatment. The upside of this is that it looks like I might be off treatment for several weeks and that will coincide with Jen’s wedding.

In the past, bone marrow biopsies were the only way to clearly know the extent of the cancer load of my type of myeloma (non-secretory myeloma); so, I feel fortunate that it has been a full year since my last bone marrow biopsy. The development of the free light chain blood test in recent years has provided a less invasive way to track the cancer on a more regular basis. However, my doctor explained, they need to know what’s going on in the bone marrow as they can only tell so much from the blood tests.

The good news is that I am beginning to experience a little improvement in the neuropathy in my feet.

Thank you for your continued prayers