Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment
Published: Feb 24, 2014 3:25 pm
There are 206 steps leading up to the street at the F-line subway stop I frequently use in New York City. Nine or ten stories deep below the hustle and bustle of Manhattan. That’s one of the things I learned in the year since I started treatment for multiple myeloma.
Back on January 30, 2013 I walked up those steps on my way to my first chemo treatment, and I made a vow: I’m going to walk up all of these steps every time I come back, not wimp out and take the escalator. I had no idea what was ahead, but the steps would be a good test for me. At least that was my theory.
Now, as I look back on the past year, I realize that I’ve learned a lot, most of it not stuff that I ever planned to learn. Maybe some of what I’ve learned could be helpful to folks who are just starting their multiple myeloma treatment. And some of it might bring back memories – good and bad – for other folks, so I’ll see if I can put some of what I’ve learned into words.
I quickly learned that no matter how prepared you think you might be, you can’t really be ready for the news that you have multiple myeloma. I’d been diagnosed with MGUS in 2009 and smoldering myeloma in 2010. And I’d watched as my M-spike crept up in late 2011 and 2012. I understood where things were headed. But in mid-January 2013, when my oncologist told me that the latest PET scan results showed bone involvement, my head involuntarily jerked backward and hit the wall behind where I was sitting.
But I also learned that getting the diagnosis, formulating a treatment plan, and moving forward with it put me in a mental space that eventually was more comfortable than the uncertainty of smoldering myeloma. Yes, there are still lots of uncertainties now, but somehow, knowing that we’re actively taking on the disease made 2013 in many ways easier for me than 2012. That was a huge surprise to me.
Even with the “security” of the plan, though, I learned that I have to take things one step at a time. In May, at Day 7 after my transplant, I was feeling (relatively) great and already figuring I’d be out of the hospital in another week. By the end of the next day, I was in the intensive care unit (ICU) with an E. coli infection and septic shock. Because of the infection, I ended up being in the hospital almost a month, not the two weeks I was sort of planning on.
As a bonus lesson, I learned that it is possible for a person to gain 34 pounds in three days if the medical team pumps enough fluid into you to flush out your system while you’re in the ICU. Like a good novel, multiple myeloma presents us with unexpected twists and turns that we need to handle one step at a time.
However, taking things one step at a time is in some ways too simplistic. You also have to do some planning ahead; planning gives us something to look forward to! As I near retirement, planning becomes extra important – but seriously complicated – as a result of multiple myeloma. So I’ve learned that I need to balance one step at a time with planning ahead. That balance point is not always easy to find.
I’ve learned what peripheral neuropathy feels like. Or maybe I should say “doesn’t feel.” Peripheral neuropathy from Velcade (bortezomib) is one of the most troubling side effects I’ve had, though it never became debilitating. I’ve also learned that Lyrica (pregabalin) can be a big help with peripheral neuropathy.
I’ve learned that my local police don’t look twice at me when I’m walking around the neighborhood at 4:30 a.m. in dex-induced insomnia. I’m not sure whether the police’s lack of concern about me in that situation is a good thing or not.
I’ve also learned what chemo brain is like. It is incredibly frustrating. I had some instances of cognitive impairment during the induction treatment phase, but much more of it during the consolidation phase, after my transplant. The worst was one Sunday when I could not remember the password I’ve used for 15 years on our home computers; I typed in so many incorrect variants that I locked myself out of my own computer. The chemo brain, fortunately, got much better as I moved from the consolidation phase to the maintenance phase. Luckily my co-workers and my family were patient with me during the worst of it.
I’ve tried to learn more about the science behind multiple myeloma and its treatments. I’ve made some progress. For example, I now understand the difference between proteasome inhibitors and immunomodulatory agents. But I am only scratching the surface. If there’s one complaint that I have about my myeloma specialist, it’s that he sometimes doesn’t answer my questions as thoroughly as I’d like. I want to understand what’s going on, but I have to ask the exact question to get what I think is a complete answer. It’s almost like talking with my children when they were teenagers. So I’ve also learned that I need to be persistent.
Perhaps the most important thing that I’ve learned is that I am not alone. I mean “not alone” in two ways. First, I am not alone in having multiple myeloma. Through The Beacon, I have met fellow members of a fraternity that none of us wants to be in. There’s some comfort in knowing that I’m not the only member of the fraternity and huge benefit in learning from folks who have been in the fraternity longer than I have.
My second sense of “not alone” has to do with the astounding support I have received from my friends and family. During the MGUS and smoldering myeloma stages, I told very few people, because the disease did not affect my day-to-day life then, and because I didn’t want to worry people.
When I started treatment a year ago, one of the best pieces of advice I got – from a dear friend who learned from her own personal experience – was to tell as wide a set of friends as I felt comfortable telling, and to be willing to accept help. I’ve tried to do that, and almost universally it’s worked well. I’ve received hugs, phone calls, emails, text messages, books, hospital visits in the pouring rain, dinners, and even a huge shipment of barbecue from Texas.
I feel like I’m surrounded by a protective cocoon of friends and family members, and that knowledge means more than I can put into words. The doctors and nurses treating me also are a huge part of that protective cocoon, of course. I have confidence in the team treating me, and overall I’m quite pleased with the care I’ve received from them.
Finally, I’ve learned that I’m stronger than I thought I was. I must have a chunk of iron somewhere deep inside my core. I do what I need to do. And through what I’ve read at The Beacon, I know I’m not special in that regard. Most all of us have an inner strength that we can call on when we need to. With the help of that inner strength, my friends and family, and my doctors and nurses, this first year of treatment has not been as bad as I thought it would be when I started it.
That brings me back to the 206 steps at the subway station. I kept my vow. I’ve walked up all 206 steps dozens of times since last January, every time I’ve taken the subway to a treatment or a doctor visit.
And I’ll continue to walk up them as I move into my second year of myeloma treatment.
One step at a time.
This is a guest patient opinion article by Mike Burns. Mike was diagnosed with MGUS in 2009 at the age of 55 and has since progressed to symptomatic multiple myeloma. He currently is glad to be in very good partial remission and continues to receive maintenance treatment as part of a clinical trial.
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