Yesterday's trip to Dalton Clinic was more than eight hours door to door. Yes, a long, long day. The second Friday in a row where I literally shut down the clinic as their last patient -- the treatment and consulting rooms empty of personnel, a vacant (!!!!) and echoing waiting room, cleaning staff scrubbing out nooks and crannies, and the soothing, healing images on the TVs turned off (bravo). BUT this time I was not escorted upstairs and re-admitted so - all things considered - the long day can be considered a great success. Home for a long weekend and Joe has all three days off (a rare event)!So why the extra-long, thank-goodness-Joe-took-the entire-afternoon-off, no-sunshine day? Well, Kevin had an opening in his schedule and squeezed in my lumbar puncture / intrathecal chemotherapy on its regular timetable BEFORE my in-patient chemo protocol. However, as we got geared up with me seated on the examining bench, humped over a pillow on a table, Kevin masked up after sanitizing and draping my back, Bethany ready to assist ... my oncologist came in to point out that my Friday blood draw results showed a platelet count of 39. All three of my medical team burst into laughter. Lumbar punctures require platelets to be at 50. Because I was not scheduled for the lumbar puncture, the good-for-me platelet level had not been flagged by my nurse in the infusion room. So ... pause, please. A platelet infusion was required to tank me up before we could go ahead with the lumbar puncture (my 7th). AND the blood bank might be even less swift than the slow-and-methodical pharmacy. It was an extended, drawn-out wait but in the end I had a platelet infusion simultaneous with my lumbar puncture. I must confess that these last 2 lps have created some internal bruising (?) / general soreness right at the site of the needle insertion. A physical reminder of a procedure that is generally painless ....
Our meeting with Dr. Perkins continued while I remained in my lumbar puncture posture - better than being in stirrups and the pillow was quite comfortable but I do prefer a more standard stance for a consultation with my physician. With me looking sideways up from my pillow, we discussed the nuances of the BMT options. Specifically, the factors that indicate third party (allogeneic) donation rather than harvesting my own stem cells (autologous) are (1) CNS involvement and (2) my "unique" presentation at diagnosis. In response to our push back, Perkins confirmed that my initial PET scan had shown lymphoma activity in my orbits and sinuses but not explicitly in my brain. However, given that the brain is already "lit up" with full metabolic activity, lymphoma is not readily apparent from this test. My early MRIs also did not surface lymphoma. So ... do I play it safe in terms of BMT mortality rates and proceed with a safer autologous transplant? OR ... do I play it safe in terms of possible harder-to-treat lymphoma relapse and proceed with the riskier allogeneic transplant? It's not definitive.
Dr. Perkins also laid out plans to bridge the gap between next week's final Hyper CVAD round and the not-yet-scheduled BMT. And the plan involves more hospitalizations! Yup. Really. A full-day, higher-dose methotrexate infusion will target any remaining, undetectable lymphoma in my central nervous system (CNS) and then I must wait to purge the methotrexate before I am released (usually 2 days after the infusion is complete). My first hospitalization is tentatively scheduled for the end of September -- after the Baltimore trip for the second opinion and Megan's departure back to Davis. And how often for these in-patient methotrexate infusions? Apparently, the methotrexate itself will not crash my blood levels and risk neutropenia. AND given how well I tolerate the chemo (aside from the epic mucositis), Dr. Perkins said I could come in every 2 weeks .... ummmm ... we need to talk some more about the medical necessity of this timetable. It seems like a LOT of time in the hospital and I am (somewhat!) sick of it! But I will do whatever I need to do. If it's one week in the hospital then one week off, that's what I'll do.
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