Rough Waters

This was a busy month, with some unexpected major challenges at the end.

We spent the first week back from Cabo catching up on our affairs. I had a fun 61st birthday plan:Dinner and theatre with our friends the McFarlands, In Spokane. The play was excellent: "Red Tape", written and directed, and acted by a small Sandpoint theatre group. Unfortunately, what I had written off as some chemo - queasiness, ended up being a major GI crisis, all night and most of the next day.
PET scan on the 13th showed no residual uptake in the areas of the abdomen and pelvis that had been irradiated in January.It also showed the many plasmacytoma popping up at an alarming rate, most of which I can see or feel.
On the 15th, I helped my friends, QZ and Mark plant 16 of the 24 apple trees they had chosen for their orchard. It was one of the first beautiful Sandpoint Spring days. Sarah came home for the weekend of the 16th, and partook of a 3 hour African dance workshop with MC!

Just before we were to leave for Boston to visit my parents and sisters and follow up with the myeloma Specialist at Dana Farber, our internet provider, Imbris, went suddenly under. After much time spent on Hold, I thought I had us set up with Verizon, but when we returned, Mary Catherine spent hours on the phone working with Verizon who now claim there is some kind of limited DSL lines in our area!?! She is now working on going through a Cable Company! The bottom line: prole@imbris.com no longer exists. Until further notice use roleinator68@gmail.com, Sorry.

Dr Anderson was pretty direct; we had made some gains with the RVD chemo and the course of irradiation over the winter. But the continued rise of the IgA, and steady accumulation of subcutaneous plasmacytoma, unabated even during chemo led him to label my disease as "aggressive". He briefly ticked off every chemo combination in his armamentarium. I had been on everyone of them in the last year! He settled on pomalideamide with decadron: a combination in Phase II trials. However the logistics of getting this in Sandpoint would be huge (FDA and drug company approvals) and time consuming. In the meantime the shortest route to doing something, was to partcipate in an radiation/immunotherapy protocol, under Dr Bishop at NIH, specifically designed for relapsed Myeloma patients with prior allogeneic transplants. This would involve a week of tests in Bethesda, radiation of my plasmacytomas, followed by an infusion of lymphocytes from my donor, Nancy.
We returned to Sandpoint and had a pleasant albeit rainy and cold visit with Burne and Robin from Seattle.
Sunday I was on a 6:15AM flight out of Spokane arriving at Dulles by 3:48PM. Our friend Chinky picked me up at the NIH gait. That evening I started having progressively worsening pain in my right flank/back.I got to bed with a couple of motrin, but was up all night with the pain, requiring more motrin,and Lortabs. I did OK hiking to NIH the next morning. But, after some of my preliminary lab was drawn, I called the protocol coordinator to make her aware of the new problem. I was seen by a PA later, who gave me a single shot of Toradol. They had checked my lab first and noted an elevated creatinine (Cr) of2.25 (it was normal at 1.3 ten days prior in Boston). The pain became worse walking back to Chinky's, and I immediately began additional motrin, lortabs and gabapentin. Back in June '09 I had similar, less severe pain on the left that turned out to be a paravertebral plasmacytoma. Increasing pain and a couple of back and forth discussions with the on-call Oncology Fellow resulted in a quick admission, spinal MRI, IV dilaudid and 10mg of Decadron. The edge was off the pain after the dilaudid, the pain almost gone 3 hours later. Languishing in the golden haze of a painless night's sleep, I was abruptly awoken at 4:55AM by bedshaking chills. The doctors were called,cultures were drawn, and antibiotics begun. I had what would develop in the next day into a pneumonia involving the whole left lung. It also became apparent that I was in acute renal failure as my Cr has steadily climbed to 10.55, hopefully the peak. I just finished 4 hellish nights in the ICU (apparently I was pretty out of it coming off the sedation for a bronchoscopy the 2nd night), but thankfully due to the stabilization of my respiratory status I am back on the floor. It could take days to weeks for the renal failure to resolve, it is mostly reversible. Mary Catherine flew out from Sandpoint when they put me in the ICU, as did Nancy from Setauket. Bram and Sarah flew out, Natty was on the Owyhee River. It was great solace to have them close by at this difficult time. I still hope to finish the required tests, and continue in the protocol, and receive radiation to these Multiple plasmacytomas, including the one that presumably caused the back pain! With some luck we could be back in Sandpoint by next weekend.

The 22nd of April, the day of my Dana Farber appointment was a beautiful Spring day, and we had more than ample time after the doctor visit,before a planned luncheon date with my very good friend, Larry DiCara, at a local Italian restaurant located on the opposite end of downtown Boston. So we "walked" Boston. including the Fenway, one of Olmsted's city jewels. Mary Catherine has a passion for Community Gardening and I knew the Fenway was one of the oldest, having served as a Victory Garden in WWII. As we meandered between plots, checking out what people were growing and their various techniques. MC stopped and pointed out a mouse a few feet ahead. At that very instant, a healthy huge redtail hawk landed on the mouse and had it in his talon. Wow! (I identified with the mouse.)

Philip