Dear Family and Friends:
This is the second of a series, the first is https://conicwave.net/node/81. Some of you reported this message went to spam, so I’m trying a different way of sending this one.
A lot has happened in just the past two weeks. Plans have changed in the space of hours.
The imaging on November 1st showed that a tumor in my liver has grown slightly. Based on that, my oncologist canceled my infusion (would have been my fourth) on November 6th and instead topped me off with iron (the IV for iron looks remarkably like rusty water). He started to plan to use a different combination of drugs the following week – that would have required hospitalization early the following week.
But by the next day, he found an abstract for the results of a phase I study of a drug specifically targeting the sub-types of T-cell Lymphoma that my cancer falls in. So, we’ve switched gear to attempt to get me into the phase II trial. One of the co-authors of the abstract is at Fred Hutch cancer center. I have an appointment with her Monday the 18th. In the meantime, I have a PET scan on the 15th, with a brain MRI and an endoscopy to be scheduled ASAP.
Either way we go with this, I’m likely looking at a stem-cell transplant afterwards.
Karen has been and continues to be a rock throughout all this: asking questions I didn’t think of and otherwise taking care of me. Her research skills have helped us understand what’s happening.
The last of my hospital stays was the beginning of what I think of as the new form my life has taken. I entered the hospital on August 29 unable to stand up because of blood loss due to internal bleeding. At 4 in the morning, Karen called 911. The fire department helped me down the stairs from the bedroom to the gurney and it was off to Swedish. I was in an emergency room suite that had multiple beds separated by curtains. Still, I felt lucky I wasn’t on a bed in the hallway like some I saw on my way to and from various labs – mostly CT scans. They never determined where I was bleeding from, but I received 2-3 units of blood that day.
My surgeon from the previous stay came by early to tell me the pathology results, over two weeks after the surgery on August 11th. I have T-cell Lymphoma – and a rare form of that.
Finally, at 11 that night, they moved me upstairs to the Intermediate Care Unit, where I spent two nights and received more blood. Karen baked a cake and along with sister Jill, son Galan, and our friends Phyllis and Bob celebrated my 72nd birthday. That night I moved to a regular room. A nurse had written a “Happy Birthday” message on the white board in my room.
On Monday, they took me downstairs to install a port. The port is essentially a semi-permanent IV in my upper chest attached to a vein in my neck. A nurse with special training can use it instead of inserting yet another IV and it’s safer in that it has less chance of leaking onto the skin – a no-no for chemo treatments. Blood samples can be taken as well as IVs attached. This helped me along in the denial stage that I might still be partially in. Oncologists, hospitalists, and palliative care docs came to see me multiple times over the next week. They would often find me walking the corridors as I got 6,000 steps in each day. I also received a PET scan. I received my last unit of blood (to total seven). On Friday, I received my first chemo treatment, and they released me on Saturday.
We’ve had the good news that Angela and Harry are moving near us along with granddaughter Fia and a to be named grandson in May.
Thanks so much for all the good wishes and visits.
Doug