It’s that time of year again. It’s my fourth SCT birthday and the state of my body is good. I’m happily surprised I can say that. Although 2020 is taking a toll on my mind, I try to remember how lucky I am to be with my family, still working, and basically healthy. Four years ago that was all up in the air. Today I feel I’m on firmer ground.
Like the rest of the world, Covid-19, not multiple myeloma, has impacted my life the most this year. Luckily my immediate family and circle of friends have been spared from the wretched virus, but we’re all significantly impacted. I’m still working from home, avoiding public contact as much as possible and I haven’t hugged a grandchild since March.
On the positive front, with my wife and daughter (my multigenerational housemate) we’ve completed numerous home-improvement projects this year. The gardens and yard around our house look spectacular. I’ve also discovered that retiring from daily trips to the office might not be as boring as I imagined. I’m now hoping my good health holds long enough for me to leave work voluntarily in a few years and make this a normal state of affairs.
Earlier this year I learned I was MRD negative. While my monthly labs are technically unable to confirm MRD status, they continue to show no sign of myeloma. I’m thankful that I’ve remained cancer free nearly the entire 4 years since my SCT. Except for fatigue and “chemo brain” I’ve been relatively symptom and side-effect free as well.
Because I’ve stayed so healthy, my care team decided I could reduce the medications included in my maintenance regime. I dropped weekly trips to the cancer center for Kyprolis infusions and bid farewell to the mood swings and sleeplessness caused by Dexamethasone. I continue to take Pomalyst 21 of 28 days. This, however, has created issues I’m still dealing with.
When I switched to Pomalyst only maintenance the dosage was doubled to 4mg. My fatigue increased and daily naps became the norm. My monthly blood tests revealed my tiredness was caused because my white cell count and neutrophils tanked. For the first time since my SCT I’d become neutropenic. Obviously this is extra dangerous during a world-wide pandemic.
My care team had me hold the Pomalyst a week and retake my labs. My white count and neutrophils returned so I’m back on medication. While I will repeat the labs this week, we now know my system is working (it produced good cells absent the medication), so we just need to pinpoint a safe and effective dose.
While this episode was briefly troubling, it is encouraging to see my system respond quickly and positively once the medication was removed. That means my marrow is still resilient even after 4.5 years of constant chemotherapy. The episode was an important reminder that I need to be extra careful. Complacency at this time could have very serious consequences, no matter how good I feel.
The months after my diagnosis were my darkest mentally in my life. Time, support and counseling helped me out of a dark hole. This year is challenging for the crown of “worst”. Not surprisingly surviving cancer has only been a small part of my troubles. Like many others, the state of the world today weighs heavily on my mind. I’m trying hard to be optimistic, a skill honed after my diagnosis, but it’s challenging.
I approach this birthday melancholy for sure, but there is much to be thankful and hopeful. Unlike this time in 2016, when I counted each day post transplant, today I’m planning for years from now. I’m no longer mourning my lost retirement years, but looking forward to them.
Lens on Myeloma 