On Friday I visited the Siteman Cancer Center at Barnes for the first time. Despite the minor surge in my counts – preparation for a stem cell transplant still had to proceed. We don’t yet know if I will ultimately need one, but if we wait to start the process, it might end up being too late.
First I attempted to get my blood drawn at the lab, but it did not open on time and the nurses decided to send me to the doctor first so that I didn’t throw his schedule off for the day (I was his first appointment). So I headed into the office of Dr. DiPersio, the Chief of Siteman’s Oncology Division and the Director of the Bone Marrow Transplantation & Leukemia Section. Quite a mouthful.
I had looked up his resume ahead of time, and his mile long credentials list was reassurance that he was the right guy to do my transplant. I didn’t get to see him right away though; a Fellow named Dr. Kuperman came in first to run over my medical history. He seemed like a nice guy – but he was super nervous and didn't at all seem confident in what he was doing. My parents smelled this fear and just about ate him alive with their questions, most of which he couldn’t or wouldn’t answer. Luckily for him, his time with us was very short.
After he left, Dr. DiPersio came in with two medical students in tow. I don’t know if they always followed him around, or if I was of particular interest because of how rare Aplastic Anemia is. Dr. DiPersio was very personable, and did a good job of explaining the process, my condition, and what he knew or didn’t know. He also did a good job listening to and carefully answering questions that myself or my family lobbed at him. I found out that the process of setting up and finding a donor would likely take 4-6 months, and that I would probably continue my cyclosporine regimen for the next five years. As a white male, transplant history would suggest that I had an 80% chance of finding a good donor. I learned that I was a prime candidate for contracting something called Paroxysmal nocturnal hemoglobinuria (PNH), if I did not have it already. This is a condition in which a specific protein on the surface of my red blood cells would target them for premature destruction. In and of itself this is not fatal or particularly crippling – but it could lead to very dangerous blood clots later on, so it was something that I needed to be tested for about every six months.
I also learned that Dr. DiPersio had arranged for me to have bone marrow biopsy done shortly after I finished meeting with him – something I definitely would have liked to have known in advance. At the very least, I would have opted for athletic shorts and a t-shirt - not the jeans and a white dress shirt I was wearing.
After meeting with Dr. DiPersio, I met with my transplant coordinator. She gave me some more informational material, and explained her role as my primary contact at Barnes for just about anything I would need or need to know throughout the process. She then went into detail about the donor location process, something that I didn’t realize would be as complicated as it is. More than just running my info through a database, the search is quite the long and drawn out ordeal.
Then I left that set of offices and went across the hall to have my blood drawn. The lab at Barnes had never seen me before, so they didn’t realize I had a PICC line and ended up drawing from my left arm instead. That was kind of annoying. It’s not like I'm not used to getting stuck by now, but with how much hassle I go through to maintain that PICC line in my arm it better get used whenever possible.
While getting my blood drawn, I noticed that there was a doctor standing off to the side and observing me and the nurses that were hovering over me. She started to ask me questions about how I was doing, and about my medical history. She then introduced herself as Dr. Bessler, another specialist to whom I was being referred. She was an expert in the area of PNH, so my case was of interest to her. Not only as far as treating me was concerned, but also to have me participate in a study she was conducting. When my blood draw was finished, we grabbed the family members from the waiting area and went back into another office to talk about her study. Similar to Dr. DiPersio, she really seemed to know her stuff. There wasn't a question we threw at her that she wasn't able to immediately and confidently answer. Her Swiss accent didn't hurt, either. People with European accents automatically sound smarter, right?
Finally it was time for my bone marrow aspiration and skin biopsy. I was not looking forward to this. Barbara, the nurse who performed the procedure, was very forthcoming with details of what she was doing, when she was doing it, etc. This was very helpful, considering I was awake but couldn't see what was going on from my prone position. The bone marrow aspiration involves taking a toothpick sized core of bone from my iliac crest (pelvis) to be analyzed, then inserting a syringe into my bone and drawing out a sample of marrow blood. The skin biopsy (along with an oral swab) was done to get a baseline DNA for the study I was to participate in. When these were all done, Barbara patched me up with a few stitches and two band-aids. One band-aid was sparkle colored and one was traditional brown, so that I could more easily distinguish between the two sites and provide the proper "post-op" care to them.