Your Most Valuable Asset
Sitting down to write this blogpost, I wondered if I was up to the task of finding something useful that we can take away from 2020, a year we’ll all be glad to “kick to the curb,” as a friend has said. The greater themes of this year—the pandemic, the political tumult, the social unrest—seem too vast to summarize and take inspiration from in one blogpost. So, I scaled down my thinking from a global perspective to a more personal takeaway—what lessons has 2020 reinforced for me? One simple theme stood out, but behind it is a more complicated story, one which started several years before the pandemic darkened our collective doorstep.
A Defining Day in One’s Life
Maybe some of you have a particular day in your personal history burned into your memory, one that represents a turning point in your life for better or worse. For me, it was June 6th of 2017 (the 73rd anniversary of “D-Day,” an irony not lost on me), and it was for the worse. After some testing related to occasional back pain, my athletic, fit and seemingly healthy husband Craig was diagnosed with a condition called high-risk smoldering myeloma, and we embarked at that point on a medical journey that tested our resilience at every turn.
Craig’s diagnosis is a precursor condition to a blood cancer called multiple myeloma, a currently-incurable disease that, when active, typically manifests itself in bone lesions, kidney disease and anemia, among other symptoms. The “high-risk” label means that Craig has a high risk of progressing to active multiple myeloma but hasn’t done so yet. In fact, Craig’s back pain was found to be unrelated to myeloma disease at all. That’s good, but this diagnosis is a bit like being allowed to rearrange the chairs on the deck of the Titanic. The FDA-approved standard of care for high-risk smoldering myeloma is…to do nothing. They call it “watchful waiting,” which generally means there is no insurance-approved medical intervention until a patient has developed the criteria that mark their progression to active myeloma. Hmmm…not okay.
Looking for Answers
Once we realized that Craig’s condition would not be treated under normal medical protocols, our desire to learn everything we could about this disease took over, and we scoured websites and patient forums for everything we could find about smoldering and multiple myeloma. We learned that there are many clinical trials being conducted in the U.S. and across the world which administer chemotherapy and immunotherapy treatments to high-risk smoldering patients, with the intent of discovering whether early treatment in this precursor phase would delay or completely deter the onset of active multiple myeloma. We found a study at the Dana Farber Cancer Institute in Boston that seemed to perfectly fit Craig’s diagnosis and disease criteria and ended up enrolling him in a Phase 2 research study there. It was one which treated him with an oral chemotherapy cocktail that, outside of a clinical trial setting, would only have been approved for use on active myeloma patients and therefore would have been completely unaffordable to us given Craig’s precursor condition.
Craig will be monitored as part of the study for five years in total, but his actual chemotherapy treatment lasted for “only” the initial two years, which ended up seeming like a decade, or three. Those treatment years were difficult—my normally chill and easygoing husband was often grumpy and unsettled because the drugs he was taking made him exhausted, sick and achy. He was taking the steroid dexamethasone as part of his “triplet” drug cocktail, and we soon learned that it threw Craig on a rollercoaster of energy highs and lows that we came to dread. Remember Linda Blair in that scene from “The Exorcist,” where her head spins 360 degrees? That was Craig on dex. That said, I did learn to use it to my advantage by asking him to clean the house when he was on the “high” part of the cycle!
It got to the point where Craig was taking meds for his meds—there were so many medications he had to take to deal with the side effects of the chemo, at various times of his drug cycle and at different times of the day, we needed an Excel spreadsheet to track them all. On top of the side effects Craig was dealing with, we had the added stress of having to fly back and forth to Boston once a month for his monitoring visits during the first year, and quarterly during the second year. Those trips offered up lots of air miles, but also a host of unpalatable procedures such as blood draws, bone marrow biopsies, PET scans, skeletal surveys, and at one point, a stem cell collection, a process which is not as fun as it sounds. And of course, all of these appointments and procedures resulted in a lot of wrangling with hospital schedulers, insurance companies, and airlines.
Now, a little over a year after Craig ended the chemo treatment phase of the study, we are back to watchful waiting. Craig is feeling very well and is active and energetic again. Due to the pandemic, we’ve been able to have him monitored through local lab testing and telehealth appointments with Dana Farber. He responded to the chemo cocktail very well while he was on it, with his myeloma markers receding almost to the point of being unquantifiable. We dodged a bullet this time, but it’s very possible there may be another clinical trial in our longer-term future. We at least know now that Craig’s condition responds well to chemotherapy, which means we may be able to delay the onset of active myeloma for many years, if not for the rest of his life. And thanks to this trial and others like it, the day when high-risk smoldering myeloma can be treated under a normal standard of care and covered by insurance is getting closer.
Health is our Most Valuable Asset
What these last several years have made clear to both me and Craig is that health in all its aspects–physical, mental and emotional—is our most valuable asset. If you’re lucky, it’s one you’ve probably underrated. It’s an asset we at TCI can’t manage for you, but we certainly care about it on your behalf. It’s an asset you might not have a lot of, but regardless of how much or little you have, it needs nurturing and attention because your ability to value everything else in life depends on it.
If being grateful for life’s lessons is an ability that can be aged like a fine wine, I think mine might have a vintage of 2017. That was the year when I began to deeply appreciate several things:
- Many health challenges beset us unexpectedly and uncontrollably, and in that case we can only work with the hand we’re dealt and do our best with the rest that we do have some control over. In our case, learning as much as we could about Craig’s condition, advocating for his treatment, and then working to positively impact the health factors we could control—such as diet, sleep and exercise—helped us through a really tough time.
- Even when life seems to be working against us, there are things to appreciate. Case in point: scheduling Craig’s many appointments with Dana Farber was a logistical nightmare, because we had to align flight schedules with the doctor’s availability. But each time our patience ran short, we reminded ourselves that through this clinical trial, we had access to a world-class myeloma specialist known globally as one of the top researchers in her field. How lucky were we? Sure, I’ll hold the phone for another twenty minutes…I might not be smiling, but I’ll do it!
- Life doesn’t give us unlimited years and opportunities, so it’s in our best interest to treat today like the “someday” we dream about, to whatever extent we can. As a friend of mine said, “there are NO throw-away days.” All we’re assured of having is right now. So spend time with those people and have those experiences that are most meaningful to you, as often as you can, and given that we’re in a pandemic—as safely as you can.
Wishing all of you new beginnings for hope, health and happiness in 2021…Happy Holidays!