Update 2023-0418

It's getting real.

Yep. I have had my ass kicked. Ah, but you shoulda seen the other guy.

I struggle with the violence in the language of cancer. Kill. Destroy. Warriors. Battle. Weaponized T-cells. Fight. I search for a gentle, holistic way to speak of working with one’s body, providing what it needs to rebalance and reset cell production. After the last couple of weeks, I understand more. I don’t like the notion that there is something akin of a war going on inside of me. Then I wonder if this is a case of “it is what it is.”

I never bounced back the week after the second infusion of the second cycle (that’s why the long interval between updates) and so that is how I rolled right into the third infusion of the cycle. I was weak and able to do very little unaided. The bone pain was constant. I could not write, even on my phone. The words were swimming in my head, but I did not have the stamina to put them to paper. I had no choice but to let go and embrace a time for idea incubation. And I kept thinking that if the targeted meds are making me feel this bad, imagine what it’s doing to the cancer!

Today has been a good day so far. It has been 11 days since my last infusion, and I am feeling a bit of recovery. The protease inhibitors and the immunotherapy do take a toll. The fatigue alone is sometimes astonishing. Feeling better is all about the little things. Being able to fend for myself without Jackie there to steady me. Taking a shower without concerns of collapsing under the weight of the water. Being able to walk more than 100 steps without searching for a landing spot. Having the appetite to eat my usual favorite foods (yogurt, bran, bananas, string cheese, well-cooked veggies).

One of the drugs is causing issues with dry mouth and changes to my taste are apparent. Adios my beloved coffee; it tastes like a tablespoon of salt has been added to the cup. White tea has been a good trade. The dexamethasone (powerful steroid given at a hefty dose), a drug I have to take every Friday morning regardless of the infusion schedule, raises holy hell with my mental state. It is a struggle to stay afloat during the peak of that 4-to-5-day ride. It’s temporary and I have developed some strong skills for coping with hard emotional onslaughts, particularly when I have Jackie nearby to help me grasp that the intensity of my feeling are simply not real.

I look forward to seeing the next round of tests to see how the progress is going. Progress is a great giver of strength.

New Oncology Team

We identified some problematic issues with our original care team that were not going to get any better and were counterproductive to healing. We were fortunate to be transferred to a new Care Team headed by Andrew Cowan. Andrew is the head of the Myeloma department at Hutch and is involved in at least one clinical trial that may be a good fit for my case as time moves on. Everyone is pleased with the progress so far. Andrew is passionate about combatting Myeloma on and off the job. He has set up a team to participate in the Obliteride this year — "The Mighty Myeloma Rollers," with all funds he is raising going to myeloma research.  And he plans to ride 50 miles! 

Safe and Stable

I was intrigued by a new concept about assessing health. My ship has sailed on “normal,” though I do like to say that, except for this pesky chronic cancer, I’m in incredibly good health. What the cancer docs look for is something they call “safe and stable.” Interesting concept. It assumes a great degree of identifying a “new normal” that is applicable to a specific patient; the treatment that doesn’t harm them excessively and that their body can tolerate at some stable level. A common example is body temperature. My regular body temp is 97.2, not 98.6. Some people have a much higher normal body temp. This idea of safe and stable is applied to kidney, heart, lungs, and liver functions and a whole bunch of other indicators. I keep good notes about all this. It is a lot to embrace, and we’ve already had the experience of having to assemble and even switch care teams on the fly. Just like Austin Powers, “I’m the boss. Need the info.”

It is important that I and Jackie stay on top of what needs to be known; that we are a part of all of this, not just along for the ride. We want to be sure our care team is aware of all we’ve learned.

Counting Down the Pain

It’s been a while since my last update and this installment is getting a bit long. I have some other cool insights to share and have moved those off to the “more” section of the SubStack. Think of it like an after-show. Click below if you want to know more. (No log in required.)

Up Next

We begin Cycle 3 of my treatment on Friday. I’m grateful to be enjoying a few days of relatively little pain and wobbliness and I’m trying to capitalize on this time of respite. I’m catching up on writing, phone calls and other aspects of life that were put on hold during the last two weeks. Starting Friday, I will have one infusion on each of three consecutive Fridays. During or just after this Cycle 3, this 21 day period, we’ll do another round of thorough testing – bone marrow biopsy, lab tests, kidney tests, heart tests, lung tests, liver tests, PET scan – to see how well we have squelched the cancer and how well my body has tolerated the effort. With that knowledge in hand, we will discuss whether I am qualified for and how ready my body is for the next steps.  

But wait, there’s more

We are so blessed to be surrounded by such a loving and caring tribe of people. There is no question that some of our days are pretty challenging. When I am down for the count, Jackie is on double-duty. The things that sustains us both are the support and words of love and caring that keep pouring over us. We cannot thank you all enough.