Update 2023-1231

Day 100 New Year's Eve

Fatigue kept me long silent, with your caring and love enveloping me, as my mind bubbled with thoughts for updates. This day I can muster the energy to put my fingers to the keys. That’s how recovery goes.

Happy New Year’s Eve! Today it is 100 days since my stem cell transplant. My clean stem cells are snuggled into my bone marrow and making new, cancer-free blood. My body continues around the clock, using every bit of energy possible, to recover from the effects of the high-dose chemo and to cope with other medications. I seek peace with an ever-evolving “new normal.”

Day 100 after a stem cell transplant is a celebration-worthy milestone. It’s when the highest risk for critical side effects and complications is passed. It’s a really big deal because “Infection is a major complication and a leading cause of death in patients with Myeloma.”¹

I don’t believe in coincidences and so I see the fact that my Day 100 is also New Year’s Eve is a sign (I do believe in signs) that much good is ahead in 2024. I’m told that Stem Cell Transplant recovery can take a year, so this is that year. I am elated, and I’m a realist. The goodness will come from persistent work and continued resilience.

The (preliminary) Good News

A few days ago we journeyed back to Seattle over two days for three tests to determine how effective my treatments have been so far. The results dribbled in electronically to my phone. Later in January, we will meet with my oncologist to discuss the test results. Still…

• 12/19/2023 BONE MARROW BIOPSY & ASPIRATE: Bone marrow does not show any morphological or immunophenotypic evidence of an abnormal plasma cell population.²

• 12/19/2023 BLOOD IMMUNOFIXATION: Previously identified monoclonal component currently not detected.

• 12/26/2023 PET CT WHOLE BODY: No PET evidence of active myelomatous disease.

Changes

In the parlance of “cancer changes you,” many wonderful changes have happened in me, particularly in the last 100 days. I now give myself grace and let go of self-imposed, unnecessary expectations. I embrace a basic belief that most stressors are just not worth it and so I’m more discerning about where I let my energy flow. I’ve initiated family reconciliations that opened doors for enduring precious love and respect. I reach to appreciate that being alive is the paradox of joy and grief; that losses that shatter my life don’t have to destroy it. I’ve stopped trying to be the boss of everything, and as a bonus, I’ve come to a deeper appreciation of how incredibly capable my wife has always been, which gives me a newfound level of trust where I rest comfortably in the safety she creates for us.

On the flip side of changes that cancer initiates, as my recovery has become more nuanced and intricate, I’ve come up against the reality that, physically, I will never be as I was before this all started. It looks like we have eradicated the detectable cancer for now, and doing so has not been without costs. The treatments took a toll on my aging body in ways that will never be fully recovered. Fatigue continues to dog me, my GI tract and physical comfort are unpredictable, my short-term memory and word retrieval are tenuous for now, and the need to mitigate the risks of infection in the manner we all became accustomed to in the early days of Covid will likely be with me forever. These are just some of the collateral damage of successful, aggressive treatment that makes me grapple with a “new normal.”

Looking Ahead

Myeloma is not curable, so treatment will continue in an attempt to hold the line on remission and have a good quality of life. Scholarly publications state that patients who participate in the decision-making about maintenance treatment and advocate for the management of their disease are more likely to stick with treatments and have better outcomes. This is no small task.

Myeloma is rare to begin with and there are many forms of this disease. There are regular breakthroughs and a tremendous number of options.  Cancer care and the miraculous advances made in recent years exist within the overtaxed, understaffed, imperfect healthcare system. I firmly believe that care providers do their jobs with the utmost interest in the well-being of their patients; however, care providers are also human and are subject to the same multitude of demands and limitations, as are we all. Mistakes happen. Confusion happens. Expectations need to be calibrated. I’ve experienced all of this. “Trust but verify” is a bit of lingo that fits here.

Soon I will need to consider what’s ahead for my maintenance treatment. It is a careful balance to extend remission as long as possible without drawbacks in terms of adverse effects and reduced quality of life. It’s important to me to advocate for the care that fits me. I need to be attentive right alongside my care providers and take heed of all the manifestations of current and emerging treatments.

This will be the year I wrestle down emotional issues that I expect will surface as I seek a new normal, and make adjustments in my lifestyle in support of my well-being. It took a lot to get this far, and I am committed to being in control of my recovery and living well … hopefully for many more years.

Enjoying Now

Jackie and I (with the blessing of my care team) have ventured out on our first road trip since my treatment began in February. For years, my happy place has been in the right seat next to Jackie. As she drives, I google and share information about things we see along the way. We have had many great adventures on the road and even opened our hearts to our fabulous “forever home” in Olympia on one of our trips. This trip has been worth every bit of energy it has taken to enjoy the Day 100 and New Year celebrations in the arms of loved ones in California. We plan to have many more travel adventures ahead, many more hugs, many more moments of a good life.

May you stay safe, be well, love much and be loved, and have a life of ease.  💕

With all our love,
Mary & Jackie

1. PubMed - “Infections in patients with multiple myeloma in the era of high-dose therapy and novel agents.”

The introduction of stem cell transplantation and the novel anti-myeloma agents, bortezomib, thalidomide, and lenalidomide, have improved the outcome of patients with multiple myeloma. These advances have transformed myeloma into a chronic condition, with multiple relapses and salvage therapies, all of which result in cumulative immunosuppression and a higher risk of infection. In addition to the immunodeficiency related to myeloma and its complications, the type of anti-myeloma therapy used also plays a role in the development of infection. Therapy with bortezomib increases the risk for reactivation of herpes simplex and herpes zoster viruses, whereas the application of stem cell transplantation has broadened the spectrum of infection to include those caused by Clostridium difficile, cytomegalovirus, and opportunistic moulds. Key to the management of infection is the understanding of the specific risk factors and periods during which patients are at risk; this allows the anticipation of the likely pathogen(s) and the application of risk-adjusted prophylactic and treatment strategies.

2. The initial Bone Marrow Biopsy result is from the Flow Cytometry process that can measure 1 in 10,000 cells. Material from the same aspiration is being processed using clonoSEQ® MRD (Minimum Residual Disease) Detection that can measure 1 in one million cells. That result is expected mid-January.