I got the call at 5 a.m. Saturday morn that the lab at SCCA had grown bacteria in Shann’s blood, which had been drawn the previous day. It was kindly but firmly impressed upon me by the calling P.A., that this was not to be messed with and no “I couldn’t just let Shann sleep in for another couple hours—We needed to come in NOW”. Well we are into day three at our old haunt on the 8th floor of the MontLake Tower at UWMC, and in some ways its comforting, as so many of the nurses et al are now friends from our pre-transplant days here. For me the care during our pre-transplant months stands out, head and shoulders above our transplant and post transplant care—More humane and lovingly attended to—perhaps it’s that these are professional ‘care givers’, and the transplant team is more often made up of researchers that cycle in as caregivers?
They are now working at the hospital lab growing out the bacteria to figure out with greater specificity just what she has, and until then she is on a powerful antibiotic drip called meripenem (sp?). The heavy doses of steroids that she is on to deal with her GVHD, has caused her pancreas some issues with her sugar, so for awhile we are doing pre meal checks and depending on the numbers (if they are over 140) then units of insulin are injected into her belly. We are told this should be reversible as soon as the need for the steroids drops off…..and they are hoping to slowly wean her of the prednisone, budesonide and beclomethasone over coming weeks. For a guy who only knows about aspirin and aleve and then only on occasion, this regime of daily pill taking is befuddling. Some with food, some on an empty stomach, some in the a.m.only, some in the p.m. and some several times a day: dapsone (to prevent pneumonia); fluconazole and now voryiconozole (prevent fungal infections); maribavir (a clinical study drug to treat the CMV); tacrolimus for the GVHD; sprycel/dasatinib the chemo pills she will be on for 180 days, to keep the A.L.L from coming back; zoloft (for anxiety); synthetic bear bile called ursodiol to help the liver); norvasc (blood pressure from the tacrolimus); daily bags of hydration with ever changing amounts of needed elements—magnesium and potassium; which the heart uses to make the electrical ‘storm’ to make itself beat on without thought; plus a dozen other ‘things’ that are required from time to time for a myriad of issues created by the drug regime and its associated cancer/chemo body pollution.
We are still hoping to get home for early December (with a special pass for Thanksgiving), but as was brought to the fore a few days back with the early morning call out, we cannot afford to be far from the working hands at the hospital’s cancer ward; not now and not yet!
Two weeks ago, Elena started the process of getting her teacher’s certification as a TEFL instructor, from a highly regarded, accredited program called Maximo Nivel in Cusco, Peru. This will allow her to teach English all over the world. She is sharing a room with 2 other gals, at a yoga retreat center close to the school, and seems to be acclimating pretty darned well; What a courageous and soulful young woman! Mariya is working two jobs and going to school back in the Tahoe basin—also a strong, intelligent and loving super star. Shann and I are blessed so, by these two gals, and by bunches of good friends and family. Jack the mutt with the floppy ears, is a great salve for us both. And right this minute the sun is out and the color filled leaves are rustling, still attached to the neighborhood trees.
*****Postscript Oct.29–Shann here—Steve’s blog entry ended there so thought I would write a quick update. I hope to be Getting out of the hospital today. Over all, this was a pleasant stay and I feel better than when I came in. I am even eating again. They are starting the taper on the prednisone, and they have isolated the bug, which luckily was a sensitive and not a resistant. They got me off the really harsh kidney med (for the CMV) and resiliently my kidney function bounced back to normal. The Graft vs. Host disease, as long as it ca be controlled, shows that the graft is strong, alive and sturdy. Mariya’s cells are ready to work, as soon as they come off immunosuppression (the tachrolimus and the steroids).