Remission Holding Steady
In contemporary slang, it’s been a minute since. I’ve sent out an update. I’ve had two bone marrow aspirations since September to check for signs of myeloma reemerging. I’m pleased to say that my myeloma remains in check; I’m still in remission. I’ve been living day by day, doing what’s necessary to continue my successful survival from myeloma. It has been far from a linear path.
Fending Off Infections — September to March
In July, I was prescribed Cipro for a mild urinary tract infection. Without knowing that it could happen, that medication made me susceptible to a relapse of C-diff, a serious illness I contracted during my stem cell transplant. I spent August combating that infection. I discovered that the situation was preventable, which was frustrating. I channeled my frustration into raising awareness about the dangers of broad-spectrum antibiotics in my second co-authored post with my hematologist-oncologist, Andrew Cowen.
The treatments for the C-diff infection worked, but I was left with a new issue—post-infectious IBS. This happened because my gut biome is still unsteady as it works to recover from the ravages of the high-dose chemotherapy that was part of my stem cell transplant. In November, I had a fecal transplant. The idea is to use a donor’s healthy gut biome to reboot my own. The jury is out as to whether that has been effective. I continue to struggle with IBS symptoms.
In January, despite all our usual cautionary measures, Jackie and I contracted RSV. Ugh. That’s one highly contagious and tough infection. The only thing I could use to manage it was an expectorant and Tylenol. RSV lasted a month. Suffice it to say that it was a rough go to have both Jackie and me sick simultaneously. We are both better now, though I have a lingering cough.
By February, it was clear that my body had deconditioned again due to multiple sequential infections. I dedicated significant attention to getting myself in better shape. In addition to enhancing my physical condition, I aimed to be healthy enough to enjoy a long-awaited opportunity scheduled for March—a Writer’s Retreat in Taos, NM.
Writer’s Retreat
I returned today from that week-long sojourn into writing. What a joy! My book, a memoir that examines the relationship between early-life trauma and late-in-life critical illness, is in its first revision. I went to the retreat with much work. The time was highly productive.
The amount of time spent in the aviation corridor is equivalent to the amount of exposure to many diseases. I have little or no immunity to most communicable diseases and can’t even be vaccinated for many until after my second stem cell transplant birthday. (I’m looking at you, Measles.) This made me apprehensive about flying to Taos. Getting there from Seattle isn’t easy—it involves multiple flights, an overnight layover, and a two-hour drive from Albuquerque. My daughter, Ina, suggested a better plan: I flew to Denver, and she drove me four hours from her home to Taos. She returned yesterday in time to attend the public reading/performance at the retreat’s conclusion, participate in the after-party, and chat with the other writers over breakfast this morning.
I read a portion of a chapter from my upcoming book at the performance given to the local community. As I drew a deep breath before I began, I thought, “So this is what it could be like to do a book tour.” A friend in the group, Chery, recorded my reading. That video is included in this update. The text of what I read is below.
The video shows that, with purposeful adaptations, a good life can be had in the survivorship phase of myeloma. (Also, that hair grows back!) Ina’s plan shortened my time in crowded airports, spared me from driving alone at high altitudes with my oxygen concentrator whirring away, and let her keep a protective eye on me. We turned it into an adventure for which I am deeply grateful.
As always, I’m thankful for your tremendous support of Jackie and me.
💕
Warm Regards,
Mary Rose
There’s Something Wrong in My Head
Looking back, I can’t ignore how precisely my intuition spoke to me long before I had words or evidence to understand it.
For several months, I’d said, “There is something wrong in my head.” I was experiencing a vague and unsettling sensation—something I couldn’t explain but also couldn’t dismiss. Every time I said, “There is something wrong in my head,” my hand instinctively went to the same spot, tapping gently at precisely the place where the doctor later found where the blood cancer—myeloma—was poking holes in my skull—as well as other bones in my body.
It wasn’t the first time I sensed something before actually knowing it. It was another case of how deeply attuned to my body I have become, even when I don’t yet have the data to understand what it’s telling me.
I had a brush with myeloma in 2013 when I was diagnosed with its benign precursor—Monoclonal Gammopathy of Undetermined Significance—or MGUS for short. In 2013, the prognosis for myeloma was bleak and devastating. However, most people with MGUS never develop myeloma—in fact, the odds are only about 1% with each year that passes.
The minute I learned I’d dodged that bullet, relief washed over me, allowing me to bury any lingering anxieties about myeloma deep enough that they only resurfaced briefly during my semi-annual blood tests.
When I was diagnosed with myeloma in 2022, what I recalled from my 2013 knowledge was that I had about three years to live and that my death would be truly horrible. My bones would break. My kidneys would fail. I would lose my mental capacity. And my body would deteriorate in ways no one wants to imagine.
As I scrambled to establish care providers, I was also secretly researching death-with-dignity options, covertly decluttering my closet, and mapping out action plans to leave behind for the disposal of my personal belongings. I wanted to spare my wife, Jackie, the burden of those tasks when I was gone.
Then, two events stopped me in my tracks.
During a late-night conversation with a long-time boating friend, I broke the news of my diagnosis. Bill seemed concerned but not overly distressed. Seeing that I was struggling to hold myself together, he said, “You know you are not going to die from this, don’t you?” He was calm and resolute as if trying to will me into believing him.
“Oh Bill,” I began, my voice shaking, “This is myeloma. There is no cure. It’s terminal.”
“You are not going to die,” he said again, more insistently. “Look, I know what I am talking about. My sister has been a hematology-oncology nurse at UCSF for 25 years, and I know about myeloma. There are lots of new treatments. You are going to have a gnarly year or two, but you are not going to die.”
Bill’s words brought me straight upright in my chair. His calm certainty cut through my fear. He had no specifics, but I still felt strangely reassured, as though he had glimpsed something hopeful I couldn’t yet see.
The following day, as the sun crept into the room, Jackie and I puttered about, smoothing the comforter and performing the small rituals that mark the start of our day. I felt upbeat as I recounted my conversation with Bill, my words trailing off as I adjusted a corner of the bed.
Jackie abruptly stopped what she was doing and moved close to me, her face suddenly serious. She took my shoulders in her hands, her grip firm but gentle, and looked directly into my eyes.
“Please stop dying,” she said firmly, her voice steady but edged with a desperate vulnerability, her eyes brimming with the tears she refused to shed. “I know what you’ve been doing. Please, just stop. I’m not ready for you to be gone.”
The smell of coffee drifted in from the kitchen, a distant reminder of normalcy against the weight of our conversation.
I felt the depth of Jackie’s fear, her love, and her unwillingness to let me slip away. When I opened my mouth to respond, words refused to form. In that fragile silence, my heart hammered out a fierce, insistent need not merely to survive—but to truly live.
An undeniable drive to explore my options took hold, knowing that no matter what, my future was mine to determine. I set out to learn the fundamentals of myeloma and learn about the treatments that could fuel my hope.
© 2025, Mary Rose.
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