An Unexpected Surprise

I experienced an unexpected emotional response when I learned I was going to cut back the treatment regimen I’d been on for nearly four years.


It is difficult to describe how surprised I am. I’ve thought about this day a lot. I’ve written about it here more than once. I was disappointed when I thought it wasn’t going to happen. Still, I didn’t expect the deep emotional feeling I experienced as I walked out of the treatment bay for the last time.

Let me back up a minute.

Following my autologous stem cell transplant (ASCT) in 2016, I began an aggressive three-drug maintenance regimen of Kyprolis, Pomalyst, and Dex (KPD).  Three years later, in September 2019, I met with my doctors expecting we would reduce the treatment. I was disappointed when he recommended continuing the treatment, but with possibly lower doses.  

Not only did I feel disappointed, irrationally perhaps, I also felt defeated. This was a low spot for me emotionally. I wondered if I’d ever feel I’d advanced in my treatment or ever get a break from the constant treatment.

Before making the final decision on the on-going treatment we agreed to undergo more precise testing; MRD testing.  I’ve shown no monoclonal proteins in my blood tests in at least 3 years, so is it possible that I have no minimal residual disease? As I just wrote, I underwent a bone marrow biopsy and a PET/CT to confirm that I am MRD-. This is the best possible response a myeloma patient can achieve under today’s testing methods. It is not a cure, but it is a very deep response and a statistically good predictor for a long progression-free survival and longer overall survival. 

With that great news, I met again with my doctor and his view had changed. He was ready to recommend Pomolyst only maintenance. No more Carfilzimib and, surprisingly no more Dexamethasone. 

I’d given this much thought for months. Even though my gut tells me Carfilzimib may have been the heavy hitter getting me to MRD-, I want to take advantage of this moment of good health, no matter how short, to enjoy my life a bit more. My schedule opens, the treatments are easier, I spend more time at home, and less time driving and sitting in treatment. It is worth the chance that I may open the door to relapse even a crack to get some life back. Of course, we won’t take our eyes off the ball.

I will get blood drawn at a lab near my home once a month. I will see my care team at Seattle Cancer Center every two months. We may do another biopsy and MRD test in a few months to watch for early signs of relapse. Even so, hours, days, weeks of my life will no longer be spent driving to and from Seattle, waiting for labs, and waiting for infusions. I received a great gift of time.

Of course, this is all the cerebral part of the decision to change. I was unprepared for the emotion that was about to sneak up on me following my final carfilzomib infusion.

When I posted a short note about my new treatment plan to a General Myeloma Facebook group, a fellow patient commented, “It’s surreal, too, isn’t it? You may find you seem to have a lot of time on your hands, or you keep feeling like you’ve forgotten something. It’s awesome and terrifying at the same time.” She’s right. Surreal is exactly the feeling that began to wash over me at this moment. I’m also sure there will be days when my body expects to make a trip to Seattle and I’ll need to “pinch myself” when I remember I can stay in my pajamas and enjoy another cup of coffee.

The treatment floor at SCCA is a series of individual treatment rooms with either a patient bed or chair set up for treatment. I estimate there are about 45 treatment bays scattered around the floor.  I’m familiar with each hall and many of the bays as I’ve roamed this floor over the last 4 years (counting initial treatments).  Today I was assigned bay 14.  Just across the hall from bays 17 and 18. Those were the rooms in which I received high-dose chemo to kill my bone marrow and then received a transplant of my stem cells to reboot the production of healthy bone marrow. My autologous stem cell transplant (ASCT) happened here.

It probably snuck up on me, but suddently I put together the significance of reaching MRD negavtive status, dramatactily reducing my treatment regimine, having my doctor express how good I looked nearly five years from the first time he saw me. I am working nearly as much and as hard as I did the day before my diagnosis. I’m able to participate in nearly every past-time I’ve enjoyed my entire adult life. I have accomplished so much. Today there are so many objective and subjective measures telling me I have accomplished so much.

I have read in the past about other types of cancer patients getting to “ring a bell” as they leave their treatment for the last time. A sign of completion, joy, celebration. I’ve lamented at times that myeloma patients won’t ever “ring the bell” beacuase we never know when our treatments will be done. But walking down the hall on this day I mentally “rang a bell”, taking a last look around and silently saying “goodbye.” 

Chances are this state is not permanent, but today I won’t think about that. Today is a truly remarkable day standing out at the beginning of many more remarkable days.

────────────── ♦ ────────────────

Photo Credit: © 2012 Mark Pouley

The sunrises on another day, another field, in the Skagit Valley farmlands. The fields have produced crops for decades, but each day brings a new sunrise, new hope, a future crop.

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