Bernie's Health Odyssey (Oct. 7, 2022 to Dec. 4, 2024)

My Saturday, October 7, 2023, post to Facebook, plus updates through December 4, 2024:

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It was a year ago today, October 7, 2022, that I was told by phone by a physician in my main PCP’s office to go immediately to the Emergency Room to get a blood transfusion because my hemoglobin levels were dangerously low (6.5). I ended up being admitted for what would be a 3-day hospital stay while they tried to find me an acceptable unit of blood. They never did find an acceptable unit of blood. Turns out that when your blood already has weird antibodies in it, finding an acceptable unit is no small chore. The main product of that hospitalization was connecting me with Michael Yen, who is now my hematologist/oncologist. Lacking available blood, he got my hemoglobin levels back up with a treatment regime of high doses of Prednisone. In the short term, that worked. Alas, it cannot be a permanent solution. He was also able to determine that I have autoimmune hemolytic anemia and chronic lymphocytic leukemia (AIHA and CLL in medical shorthand), with the CLL perhaps causing the AIHA.

The problem with the high-dose Prednisone is that it impaired my immune system, and I became mysteriously weak. This was back during the COVID Omicron/Flu/RSV surge last fall. We were suspicious that I was positive for one of those three. Whatever the case, after being evaluated in the parking lot of my main PCP, Gael DeCleve, on November 21, he looked at me kindly but sternly and said “Bernie, I want to drive carefully and slowly directly to the Emergency Room. I want you immediately on oxygen and antibiotics.” So off I went, and upon arrival discovered I was in atrial fibrillation (afib for short), and was suddenly in the trauma room at the Emergency Department. It was not good that I was being admitted 3 days before Thanksgiving. Everything slows down in hospitals on weekends and over major holidays. Eventually, pneumonia was determined to be the culprit. My regular cardiologist, Victor Ochoa, was on the case, and he spent six days trying to get my heart out of afib medically. Finally, he opted for a procedure called electrical cardioversion on November 28, which fortunately worked and has continued to work since then. I was discharged the next day.

The next two months presented a nice lull. We had a nice trip to Southern California over New Year's Eve/New Year's Day, and went to see the new Aaron Sorkin stage version of “To Kill a Mockingbird” (with Richard Thomas as Atticus) and to go to Disneyland. A month later, I went to present on February 3 at a conference at Arizona State in Tempe sponsored by the International Society for the Study of Religion, Nature, and Culture. Check out my YouTube channel to see my presentation and the Q&A afterward. https://youtu.be/0gb-vdXaljE

At the end of February, I had another anemia crisis, with my hemoglobin going down to its lowest point yet, 5.4. I was able to get a blood transfusion that time. And I was put on a painfully expensive drug, Calquence, which I took for 30 days and did have the effect of bringing my hemoglobin back up.

However, starting in January, I started noticing a lump forming on the left side of my neck and a weird sensation at the back of my tongue. Initially, Dr. Yen thought it must have something to do with my CLL and ordered a CT Scan, a PET Scan, and a Bone Marrow Biopsy. The March 10 PET Scan, in particular, raised alarms, and he sent me to an ENT, Dr. Christopher Xiao, who biopsied my neck on April 4. The unwanted diagnosis of HPV 16 neck and tongue cancer was delivered on April 11. Now, the real nightmare would begin.

Beginning May 16 and ending July 5, I began a course of 33 daily (Monday through Friday) ten-minute radiation treatments under the supervision of Dr. Charlotte Kim, and chemotherapy under Dr. Yen. The radiation increasingly destroyed my taste buds and salivary glands such that I could neither eat nor drink and had a hard time sleeping to boot. I had to have a feeding tube put in on June 29, leading to a bizarre eight-day hospitalization. They would not discharge me until they could find a home healthcare agency that would accept my particular Medicare Advantage insurance, a matter greatly complicated, AGAIN!, by being admitted at the beginning of the Fourth of July weekend and holiday, when nothing much gets done. They did finally find a home health agency that would send a nurse to make sure I was feeding and hydrating myself with the feeding tube. My weight loss did stop. I am down 40 pounds, a mere wisp of my former self.

Veronica has been my rock and angel throughout this. While not gone, the radiation side effects have abated substantially, though I am still plagued by a very dry mouth due to impaired salivary glands. And the range of things I want to eat is still quite narrow due to impaired taste buds. Imagine not wanting to eat ice cream or cookies because they don’t taste good. And the chemotherapy had the effect of cratering my White Blood Count to dangerously low levels. I’m still only about 60% of normal.

As Veronica reported earlier today, I had my 3-month post-radiation PET scan this past Wednesday, and got and discussed the results with Dr. Kim yesterday. The good news was that in terms of tumor shrinkage, both in the neck and at the back of the tongue, the progress is good and is progressing as expected for a desired outcome. My next assessment will be in 3 months, this time in the form of an MRI. I am very claustrophobic, and I hate MRIs. But Veronica, with the assistance of some Ativan, will nurse me through it.

UPDATE (Thursday, Dec. 7, 2023): I saw Dr. Kim again on Tuesday. Things continue to look good, but she is going to order another CT/PET scan for early January to be sure. This will be in lieu of the MRI she had originally planned, so I am off the hook for that, for now.

UPDATE (Friday, Dec. 22, 2023): Went into see Dr. Yen today. My white blood count (WBC) continues ot hover around 50 to 60% of normal. My hemoglobin is still a bit below normal 87% of normal. He'd hoped my WBC would have rebounded by now, and it hasn't. For now the plan is to refer me to Stanford to get another Bone Marrow Biopsy and see if that can shed some new light on what is going wrong with my blood cell production. See between Drs. Kim and Yen, there is a probably a CT/PET scan and Bone Marrow Biopsy in my future.

UPDATE (Saturday, Feb. 10, 2024): Good news. I had a third PET scan on Jan. 30 (a procedure where a radioactive solution is injected into your veins, you take it easy in a recliner for 45 minutes to let the elements circulate, and then you're fed into a giant machine at six-inch increments to count the radioactive emissions from your body, while simultaneously doing a CT scan). I met with Dr. Charlotte Kim, my radiation oncologist, on Wednesday, Feb. 7, to go over the results. As to my neck and tongue cancer, I am deemed duly cured, subject, of course, to periodic monitoring.

Friday, Feb. 9, I had one of my regular blood tests at Dr. Michael Yen's office (my hematologist/oncologist for my Autoimmune Hemolytic Anemia/Chronic Lymphocytic Leukemia) to test my White Blood Cell and hemoglobin counts. At my last check-in on Dec. 22, my WBC was 2.2, and my HGB was 10.5. Normal is 4 and 12, respectively. Yesterday's results were WBC 2.6 and HGB 11.6. So, over the last seven weeks, with no specific medical interventions, I've gone from 55% to 65% of normal on my WBC and from 88% to 97% on my  HGB. The trend is in the right direction, so for now, Dr. Yen is not going to order another bone marrow biopsy; instead, we'll just monitor my levels monthly.

UPDATE (Saturday, April 9, 2024 & May 7, 2024): I had my monthly regular blood test at Dr. Michael Yen's office (my hematologist/oncologist for my Autoimmune Hemolytic Anemia/Chronic Lymphocytic Leukemia) April 9, 2024 & May 7, 2024 to test my White Blood Cell and hemoglobin counts. The good news is that in each of my last two tests, both my WBC and HGB have inched up (2.3 to 2.5, and 12.2 to 12.5, respectively), such that my HGB is in the normal range. My WBC is still only 62% of normal but it is headed in the right direction.

UPDATE (June 4, 2024): I had my monthly regular blood test at Dr. Michael Yen's office and my White Blood Cell count was 3.4, a big jump from my previous 2.5. 3.4 is 85% of normal, my best showing since I started chemo. My hemoglobin dropped a bit but not too bad.

UPDATE (Dec. 4, 2024): I had my quarterly regular blood test at Dr. Michael Yen's office and my White Blood Cell count was 2.5, HGB 12.2.