Home » Opinion

The opinions expressed in this article are solely those of the author and do not necessarily reflect the opinions of The Myeloma Beacon or its staff.

Two Hundred And Six Steps: What I’ve Learned During My First Year Of Multiple Myeloma Treatment

11 Comments By
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.

If you are interested in contributing an article for publication in the opinion section of The Myeloma Beacon, guidelines can be requested by emailing .

Photo by Joan Sorolla on Flickr – some rights reserved.
Tags: ,


Related Articles:

11 Comments »

  • Eric said:

    Mike

    Nice article. One day at a time is not easy, but well worth the effort. Humans are designed to plan for the future and we still need to do that. However we can learn a lot from our pets, cats or dogs or whatever. They enjoy the moment and they live great lives. We can to. Live and enjoy today, sneak a little planning to satisfy our human side, and enjoy a sunny warm spot to snooze with the cat. Thanks for the 206 steps.

  • Jerry Wynne said:

    Great article. Now I know what to expect in a way.

    Never thought I’d be a member of a club that I didn’t want to be in, but you are right and the support is comforting.

  • Mike F. said:

    The part about gaining 34 pounds in a couple of days hit home. I did the same when I was in for my transplant. I felt like the Michelin man. It was really the only time during the whole process that I was not comfortable.

  • Karen said:

    Mike,

    Thank you for writing this. I am three years post transplant and I really got a lot out of this!

    You are a gifted writer.

    Karen

  • Stephen Kramer said:

    Mike, I’m a fellow Multiple Myeloma Manhattan Subway Traveler. I occasionally take the E train steps at 7th Avenue, but there are only about 100 steps there. 200; very impressive! I use the escalator at both the E and F stations.

    Your trek reminds me of when I started working downtown in the Municipal Building, where we occasionally would take the stairs up to the 16th floor (high ceilings that building, far more than 200 steps).

    I find it easier to pace myself at swimming than subway stair climbing, and I don’t delay those hurrying fellow New Yorkers I used to be! And swimming is great for the neuropathy. Put it on the list to test out when you want a longer activity of deep breathing!

    Meanwhile, as you say, one step at a time!

  • Alicia said:

    Mike,

    I enjoyed your article. I too started out as MGUS, but it was around 1998. My smoldering was diagnosed in Jan 2008 and I have been lucky and grateful that all I received in that time until now was IVIG and Aredia. I’ve endured some pretty bad infections that required IV antibiotics, but managed to stay off chemo. Now the time has come. I have dropped off the cliff and have elected to go on a clinical trial. Another bone marrow biopsy is not to my liking since the last one was less than a month ago, but study protocol requires it. I am older, 68, so if I can help anyone by participating in this study, I am going for it.

    Good luck. We are all in the boat together and are weathering the storms. Alicia

  • Mike Burns (author) said:

    Thanks, everyone, for your comments. I’m happy that the article was helpful to some of you!

    Eric – Great point about learning from our pets. I have a dog, and he’s another key player on my “team.”

    Mike F – Amen on feeling like the Michelin man! I was amazed that my skin could expand so much so fast to accommodate all the extra weight.

    Karen – Thanks! You made my day when I read your comment.

    Stephen – Thanks for the tip about swimming. I’ll keep that in mind. And I’m impressed with your own stair climbing.

    Alicia – I am sorry to hear about your relapse. Best of luck to you in the clinical trial. I feel the same way as you about hopefully making at least a tiny contribution to the science of fighting multiple myeloma by participating in the clinical trial. I read recently that only 3% of eligible cancer patients participate in clinical trials. That figure surprised and disappointed me.

    Mike

  • Nancy Shamanna said:

    Mike , I really enjoyed your column and hope that you continue to share your thoughts and experiences with us at The Beacon. I really should take the stairs more often too! Have you seen the video on Youtube from Stockholm Sweden called ‘piano stairs’?

    http://www.youtube.com/watch?v=2lXh2n0aPyw

    In Sweden, these folks replaced some stairs from a subway station with musical piano keys. The video is nice since the people really liked using them and making melodies, while ignoring the adjacent escalator!

  • Larry Gaito said:

    Great article Mike. I was diagnosed almost 7 years ago and experienced all the things you so vividly expressed in your article. I was nearing retirement when diagnosed and was not ready for all that followed. But now, I am enjoying life as a retiree. Although I understand the “taking one day at a time philosophy”, don’t forget to make intermediate and longer term plans too. Also, golfing keeps me sane and active.

  • Mike Burns (author) said:

    Nancy – thanks a lot for your comments and thanks for the link to the Stockholm steps video. That was really cool! Also, it means a lot to me that you liked the article because I’ve read and enjoyed and learned a lot from your monthly columns. And the same thing for Stephen’s columns too. Writing this has given me an even deeper respect for what you monthly columnists do. It was an interesting experience to “expose” so much if myself through the article and then wonder how people would react. So thanks to you and Stephen and the others columnists for what you do each month!

    Larry – you’re exactly right. We do have to keep looking ahead, making plans, and moving forward. It sounds like both your retirement and your treatment have been going well, at least I hope so.

    Mike

  • Ellen Goldstein-Harris said:

    I’m a NYer, so I know about subway steps! I live in Queens, but have been driving into NYC to receive my chemo. I had not even thought of taking the subway, thinking that it would be too much for me, but you know, maybe not … You gave me inspiration to push myself a little bit! Great article!