"Be less curious about people and more curious about ideas." - Marie Curie
Warning: Lots of pictures. I can't help myself...
After two long chemotherapy hospitalizations to treat Acute Myeloid Leukemia, I found myself released from the Coeur d'Alene Kootenai hospital in mid to late March. Unfortunately, the treatment did not succeed in getting the leukemia into remission - defined by medical authorities as "not detectable". Instead, 0.6% of my bone marrow still consisted of cancer cells. This was significantly reduced from the original result of over 20% cancer cells, but not as low as the doctors had hoped for. I didn't fully understand how serious the situation was at that point. All I knew was that the local physicians were passing me along to the Fred Hutchinson Cancer Institute in Seattle, Washington for further treatment.
During the second round of chemotherapy, I had received a cheek swab kit. The purpose of the kit was to determine my HLA makeup in order to locate a matching bone marrow donor. HLA (if you didn't follow the link) stands for Human Leukocyte Antigens, and it's a part of the immune system that decides whether a living cell within you is self or foreign. It's therefore important to closely match HLA types between the donor and the recipient (host).
At this point in the process, however, after being released from the hospital, I felt amazing! Blood counts were nearly back to normal levels. I was therefore able to go on extended walks and take care of household chores without gasping for breath. Still, without further medical intervention, it would only be a matter of time before the leukemia cell population would explode and overwhelm me once again.
Our local oncologist made arrangements for the Fred Hutchinson Cancer Institute to contact us. We had to travel over to the state of Washington to conduct video calls with the physicians there, as they were not licensed to practice medicine in Idaho. So we drove an hour to get into Washington, and had a video conference with an admissions administrator, followed by an oncologist.
The admissions administrator gave us some information on lodging and a bit of the logistics of being in Seattle for an extended stay. The oncologist was a bit more informative. She stated that due to my age, the Institute would be unable to run the harshest chemotherapy treatment regime that would likely get me into remission. Instead, she said, they would run the next harshest treatment regime, and expected about a 75% chance of getting into remission, while also mentioning that the treatment would take about 5 years off my lifespan. I asked what happens if I'm still not in remission afterwards, and she said "Well at that point, things begin to look grim, unless we can get you into a medical study." Okay then...
Financial and Medical coverage crap: I had three weeks before I was scheduled to enter treatment in Seattle, so I used the time to get an attorney to complete a will and family trust and file them on our behalf. I also applied for Veteran's benefits (LOL - they don't want to help you), and switched to Medicare and Social Security for medical coverage and income, respectively. I turned 65 in April, just as my employer-paid medical insurance lapsed - Medicare took over.
The timing on all of this was exquisite. Had I gone to the hospital any earlier, there would have been phenomenal out of pocket expenses between when my employer-based insurance coverage ended and when I became eligible for Medicare. I have also been receiving disability payments since early in 2026, and the coverage will be extended quite a while due to the nature of the illness and recovery period. The disability insurer is NOT happy about the situation, but until I'm released by the oncologist, there's nothing legally they can do about it :)
In the first week of April, we traveled to Seattle to be inducted into the Fred Hutchinson Cancer Institute treatment program. The trip over the Cascade mountain range was beautiful. I've always been the driver, but since we took the wife's car, she was the driver and I was able to take a few pictures out the window.
Lodging: We stayed at two different places in downtown Seattle that are associated with the Fred Hutchinson Institute. The Behnke house is a place for patients needing a short-term stay. The rooms are similar to a very inexpensive hotel - bath, microwave, a couple of beds and a TV. There is a communal kitchen with several stations for guests to cook their own meals. Not great, but not terrible...
We were at the Behnke house for two nights, until a room opened at the extended stay place, named the Pete Gross House, after a sportscaster personality from the Seattle area.
Below: A few views of the furnished one-bedroom apartment on the 5th floor of the Pete Gross House. Our home for about 6 months, and the rent wasn't cheap.
It was a noisy place. There is a freeway on-ramp to Interstate 5 nearby and the roar of accelerating unmuffled vehicles was ever-present. There is a fire station nearby and the sirens are on both coming and backing in. Also the place was in the flight path of Sea-Tac international airport, and low-altitude jets were overhead almost continuously. The sanitary workers haul trash in the early morning hours to avoid heavy traffic, so it was non-stop noise. Additionally as it got hot, we had to use a rolling air conditioning unit that almost made conversation impossible. But it was for a good cause, so if it seems as though I'm complaining, that is not the case. I'm just describing how it was.
The first step at the Institute was to evaluate whether or not I was even a good candidate for a bone marrow transplant - a cure. And at first glance the answer was clearly NO.
I was not in remission, and the odds of a successful transplant with residual leukemia are not good at all. They took another bone marrow sample, and in the four weeks since my previous sample (before I was released from the hospital in Idaho), the leukemia count had already increased from 0.6% to 2.4% of the cells. They performed an ultrasound test of my liver, because what they had in mind for chemotherapy is very hard on the liver. With my drinking history, nobody was more shocked than I was that the liver came back looking really good. Thanks mom and dad! :)
They took a lot of blood samples; for various research projects, to look for pathogens, and for ongoing HLA typing. I joked that they needed to leave me a little blood to work with :). After all these vials were drawn, they called me back later in the day to take five more samples...
They inspected my teeth for cavities and the gums for disease - things that might get out of hand during an extended immune compromised condition. I was asked all the places I had lived or traveled to during my lifetime. Immunologists wanted this information to determine what dormant infections or parasites I might have that would also be happy to take advantage of a long immune compromised period.
The causes for concern for the immunologists were Bakersfield California, Guam, and the Phillipine Islands. Bakersfield, due to a soil borne fungus that causes Valley Fever, and the other two places due to a number of tropical parasites that can lie dormant for long periods - if your immune system is working properly. They also took an X-ray of my lungs and found some stuff they didn't like, so they put me on an powerful antifungal pill called Posaconazole. Toward the end of leukemia treatment, even though I was immune compromised, the stuff they had seen had shrunk to nearly nothing.
They performed an endoscopy to check my esophagus and stomach, and then a colonoscopy to look for issues in the intestines. It was the first time I'd been through either procedure. They shot me up with fentanyl beforehand and I don't remember a damn thing. First time I've been under deep anesthesia since I was five years old. The only issue they saw was a single polyp, which was removed for analysis, and the results showed it was not cancerous.
They also did a lumbar sample - a "spinal tap" - to see if leukemia had spread into the spinal fluid. I approached this with the same can-do attitude that I approached all the other new events, but it turned out to be not too pleasant. Fortunately it was brief! There were two physicians present; one supervising the other one, because there is no room for error when poking the spine. I was placed under a different style of fluoroscope, one designed to perform spinal sampling.
Yep, that table was set up for me. The fluoroscope is attached to the C arm to the left.
I was told to lie face-down on the bed. They administered a local anesthetic, and poked on in. When the doctor poked into my spinal column, my entire left side from the waist down jerked and it felt like the entire side was a funny bone moment. Not fun. Then he drew the sample, which I barely noticed after the first thing. And it was over. They told me to drink lots of water and have caffeine to keep from having headaches. Fortunately the results came back negative - there were no leukemia cells in the spinal fluid.
After a couple of weeks of non-stop trips to the Cancer Institute, they had all the samples and tests done that they needed, and it was time for them to evaluate and decide on a course of treatment. We were allowed to return to Idaho for a week. We bolted out the door and headed home for a week of rest and quiet.
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