A Small Change in Plans

5/30/2017

Bozeman is out

As much as we were looking forward to our trip to Bozeman this summer, my doctor vetoed it. And just to prove his point, he admitted me as an inpatient to Johns Hopkins Hospital to determine exactly what had been ailing me of late.

Johns Hopkins is in

You might recall that back in 2001 I was diagnosed with Hodgkin's lymphoma. I was treated over the course of three years with radiotherapy, chemotherapy and more radiation. At that point, things were relatively stable.

Flash forward to this year. I've been feeling lousy all year, getting worse each day, to the point that I couldn't even sit up for more than 5 minutes at a time. I was admitted to Johns Hopkins on Saturday, May 20th and they've run a lot of tests. After a couple of diagnostic twists and turns, they found malignancy in my bone marrow. It's been identified as non-Hodgkin's lymphoma. The treatment is 2-3 months of the ICE-R chemotherapy regimen followed by a stem cell transplant. The transplant itself involves 75 consecutive days of outpatient treatment plus another 9 months of close monitoring.

My name is Daffy Duck

One of the common side effects of ifofsamide (the I in ICE) is delirium, as per my doctors. As Wikipedia reports:

"A common and dose-limiting side effect is encephalopathy (brain dysfunction). The symptoms of ifosfamide encephalopathy can range from mild (difficulty concentrating, fatigue), to moderate (delirium, psychosis), to severe (nonconvulsive status epilepticus or coma)."

So, each morning while I was an inpatient and receiving my first cycle of chemotherapy, my nurse would ask me my name and the current date and year. "Daffy Duck" was always my first impulse, but I never used it. I definitely have had the associated difficulty in concentrating, fatigue and I've flirted with delirium, but luckily it fell short of psychosis.

Work

As for work, I recall that I was able to work 4 days/week on average during my six-month chemotherapy regimen back in 2002. Since I've been warned that this new regimen might be a bit tougher on the body, I'm going to shoot for 3 days/week. Time will tell whether that is optimistic or pessimistic.

Support

Luckily for us all, my sister Susan lives in Baltimore, a mere 10 minutes from JH. This will therefore become our base of operations for the many outpatient visits that will comprise my ongoing treatment regimen. Currently on base are: