March 25, 2022
I’m not thrilled to resume writing this blog.
When Tim and I started it back in 2015, this blog was a convenient way to let friends and family know how our medical “journey” was going. [An aside, both Tim and I hated the euphemism “journey” since it suggests an intentional and enchanting adventure. Having incurable terminal cancer is definitely not that.] I was glad to let the blog fade away – if only to let me try for a more normal life that didn’t include doctors, hospitals, chemo and radiation. My transplant in December 2017 gave me over four years of a relatively pain and treatment-free life. Unfortunately, my opportunities for resuming a normal life were overshadowed by Tim dying, my Dad dying and that damn pandemic.
My most recent lab work a week ago showed that my cancer has accelerated – not the nearly undetectable slow creep that my docs and I were hoping for. Next week I’ll be meeting with my oncologist and Kaiser’s top multiple myeloma specialist to discuss how to proceed. I’m hoping I don’t have to start treatment any time soon, but it’s likely a matter of when not if.
I don’t expect the first line of attack will be to do another transplant. (Stanford keeps a backup container of my plasma in a cryogenic vault.) I’m not keen on going through that again. Mostly because it was a fairly rough few months initially and Tim isn’t around to take care of me. But, it was also a whole year of keeping isolated in my house – constant washing and sanitizing, never leaving the house except to go in for injections or transfusions, no visitors, not even going out in the garden. I guess it was a good practice for social distancing. The other option is they’ve come up with 15 new drugs for multiple myeloma in the past 16 years – including chemo and monoclonal antibodies. However, these new treatments alone are often not that effective – especially not for more than a short time. But, they’re finding that a combination of up to four different drugs produces better results. One problem using several drugs at the same time is that it increases the likelihood of serious side effects. Another issue is that they have to keep trying different combinations of three or four of the fifteen drugs until they get a positive response. The response to these drugs varies widely from patient to patient, so it’s often trial-and-error. That doesn’t sound so great either. I guess the third option is to do nothing, but I’m not inclined to go that route. At least, not yet. Because my multiple myeloma is now considered “active,” I’m also eligible to participate in a major international research study on multiple myeloma which could include clinical trials.
Back on the COVID front, more longitudinal data is now available concerning the virus’ impact on people with multiple myeloma. The research is showing that most people with multiple myeloma don’t get as much immunity from vaccines and boosters, often very little. So far, I’ve had three regular and one booster shot, and there aren’t reliable tests to determine my level of immunity. The research also indicates that if I do get COVID, there’s a much higher probability of hospitalization as well as long COVID. All of which means I have to continue to be extra-vigilant about masking, social distancing and avoiding indoor facilities and crowds. Sheesh! If it’s not one thing, it’s another. And another… Nevertheless, I’m still hoping to go on a few planned trips (by car) over the next few months including to Palm Springs, Santa Fe, the Trinity Mountains and the Sierra. I’m sorting out my “risk tolerance.” Right now, I'm feeling good and still doing water aerobics five days a week as well as biking or hiking almost every day. And, I have many wonderful friends near and far who are taking good care of me.
As Tim and I typically closed our blog postings…I’ll keep you informed, and thanks for your continued good thoughts.
This is a photo I took many years ago at a winery in the Gold Country. It has nothing to do with my current state of mind..."
News and Updates from Paul