My stem cell transplant (SCT) was June 13th so now I am officially SCT + 17. I was discharged from the University of Washington almost 48 hours ago. I had a out-patient follow up visit yesterday. I am happy to say, as I was reminded during my visit yesterday, my course has been “uneventful.” In other words, there has been no complications, so far.
Yet, with that said, I will say without hesitation, these past few weeks have been the most miserable of my life, and I thought I was familiar with suffering. Maybe I am a wimp. But I just can’t imagine the torture those patients who did have complications have endured. I’ve met several of them. I knew that SCT was going to be hard, yet I may have under-estimated the symptoms.
Presently, we are back in the Pete Gross House, which is near the Seattle Cancer Care Alliance. We are doing infusion for hydration each day in the apartment, as Denise takes on a nursing role.
The major symptoms of the SCT have been very painful cramping and diarrhea. In the beginning it was as many as twenty times a day. Now it is down to five or six, so there’s improvement. The second symptom was nausea and vomiting, that downgraded to just nausea, then to anorexia and taste distortion.
I have not been online during this time of being quite ill. I’ve ignored all my e-mails because I’ve felt so badly.
The plan will be to continue going to SCCA for daily checks and trying to stay out of trouble with secondary infections.
I have now missed two full months of dialysis. We were concerned that the harsh chemotherapy re-injuring my kidneys. To my big surprise, my kidney labs have continued to improve, to near normal. It is almost a given that the tunnel catheters in my chest, which were placed for dialysis on Jan 17, 2019, will be removed as soon as we are doing with our infusions (which are now using the same lines) in about 2 weeks. That is certainly a godsend.
Please pray that we can continue on an uneventful course and that when we check the status of the cancer, in about 2 months, that it will be non-detectable, meaning this course of misery was well worth it.
J. Michael Jones 
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