Myeloma On The High Plains: Can I Do This?
I cannot help but at least consider the idea that some part of my having cancer was my fault. No, I am not beating myself up. To do so would be terribly cruel and unfair. Life provides us with that in adequate doses as is. I certainly do not need to add on to that. However, in spite of all evidence to the contrary, it has been considered at times in the dark recesses of my small mind.
Before being diagnosed, I did not smoke. I was a moderate drinker, exercised regularly, and limited my intake of sugars and high cholesterol foods. In general, I tried to take the steps I had heard about, read about, and believed in that could help in maintaining or extending life as I knew and desired.
And then, boom, I was diagnosed with multiple myeloma. Cancer! How could that be? I mean, what the heck?
The fact that I had multiple myeloma was not necessarily known to be linked to my lifestyle or workstyle. Multiple myeloma knocked on my door, welcomed itself into my life, and then decided to stay, uninvited.
Hearing I had cancer was a huge punch to the gut. The ensuing radiation and treatment acted as shots to my glass jaw and really woke me up to the fact that I had to in some respect “put up my dukes” and in some manner or fashion and fight back. I had to confront the possibility that I was a punch away from it being “lights out.”
In evaluating the situation, I had to admit to myself that I was not as strong, not as wise, nor as in charge as I once considered myself to be. And the sooner I accepted that reality, the better.
For the first time in a long time in my life, I had to face the reality of knowing without a shadow of a doubt that I needed help, luck, and good fortune. And in recognizing these needs, I also had to come to some understanding as to what I was capable of in terms of satisfying those needs.
In trying to define my capabilities, both mentally and physically, I had to first let go of my ego and its pre-myeloma ideas as to what my life needed to look like. I had to reestablish my capabilities for survival. I needed to change my perspectives on many “things,” such as redefining what “being tough” meant. I had to adopt new parameters for accepting help.
As an example, prior to my myeloma diagnosis, the idea of freely talking about toileting, gastrointestinal functions, bathing, and hair loss to family members and strangers was not possible. After my transplant, it was a whole new ballgame. I freely gave information and was comfortable in discussing such matters of personal hygiene.
I also became more open to sharing thoughts and ideas about how I wanted to manifest kindness and compassion in my life moving forward. I was changing because ... well, I am not sure why, but I knew it was necessary.
As much as I saw changes in my mental and emotional being, I also experienced physical “newness.” What I am capable of after my transplant and now five and a half years later does not look like what I was capable of prior to my diagnosis. However, I am by no means complaining or disappointed. It is what it is.
While my desires are still somewhat defined by my pre-myeloma ego, each day forward carries me further away from that state of mind. Accepting my new reality and trying to find out what I am actually capable of, or not capable of, doing brings new adventures. Oftentimes it’s a relief to find out that something just “ain’t going to happen.” Often, it is accompanied by laughter and a realization that “My, how times have changed.”
Testing my capabilities, or actually my new capabilities, with regards to emotions, activities, thoughts, and concerns is ongoing. It is a moving target.
When I was first diagnosed, I could not walk down the hallway in our house without experiencing tremendous pain. After about a month of treatment, I was capable of walking to the end of the block on our street. The first time I picked up a golf club after my transplant, I was able to go to the putting green and “practice” my putting for about ten minutes before being totally exhausted. Eventually, I got to where I was capable of walking nine holes, and then eighteen holes, of golf. These were huge events. Events that re-defined my capabilities.
And the beat goes on (thank you, Sonny and Cher). About two weeks ago, several friends, my wife, and I walked to the top of Medicine Bow Peak, which is just west of Laramie. It’s about a 3,000-foot hike up to 12,000 feet (3,660 meters). I was the slowpoke keeping up the rear guard. And for the majority of the hike, I was asking myself “Why in heaven’s name am I doing this?”
Well, being able to try, and learning more about my new capabilities, was well worth the effort. Having a new “living with cancer ego,” now that’s the ticket.
Mark Pajak is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Hi Mark, Thanks for another thoughtful column. It is so true that as patients we may have to really change our lifestyles in order to carry on with our lives. Glad to hear that you recovered from injuries and were able to activities you enjoy, such as golfing. It is quite amazing that you hiked to an altitude of 12,000 feet. I checked a hike we did up to Lake Agnes, above Lake Louise. The elevation of that was 7,000 feet, and the elevation of Calgary is 3,500 feet. I found it hard to breathe even at 7,000 feet.
Hi Mark! I enjoyed reading your column. Getting used to our new “normal” is quite a journey in itself! For some reason, I still think I should be able to do all the things I was capable of doing before my transplant. Like you pointed out, some of those things just “ain’t going to happen!” Sometimes, it makes me sad, but most of the time, I find myself relying on my sense of humor and adapting. It is what it is!
I’m pretty impressed that you were able to hike to an altitude of 12,000 feet. When my son lived in Colorado, we hiked the Flat Iron Mountains. I don’t know what the actual altitude was (maybe 6,000 feet), but I don’t imagine we were up all that high. Regardless, I found it hard to breathe. Gasping for breath made the experience a definite reality check for me. I came to the same conclusion you did: Why on earth was I putting myself through that?
Letting go of the me from before myeloma is hard sometimes. Here in Duluth, we have the Lake Superior Hiking Trails, which are not terribly arduous; I can do those. I think my days of hiking in the mountains are in the past. They are sweet memories! I pretty much gave up playing golf, thinking that the twisting motion would be stressful on my core. However, hearing that you are able to play makes me want to get back out there and try it. Why not?
See you have inspired me with your words. Keep writing your column. You are inspiring me!
Thank you. It helps me to be reminded of reality. Under any circumstances, our days are numbered. And, our circumstances change. In my case, attention to this helps me find the attitude to find the energy to march up that hill and enjoy the experience that’s available.
Mark, thanks for sharing such a thought-provoking column. At the end of the day, I think we are all comprised of "needs" (spoken and unspoken) and "capabilities" (proven and unproven).
For some, admitting the needs part is difficult, while for others, maybe believing in the untapped capabilities is tougher. One thing is for sure, being a myeloma patient or caregiver is going to test both, and it is in the testing - our "trials by fire" - that we have the potential to find a deeper, meaningful understanding of ourselves and one another. Thank you again for such insightful reflections! Wishing you the best with many good days ahead!
Thank you, Mark, for a very thoughtful and thought-provoking column. Your early questioning of why you were diagnosed with multiple myeloma sounded just like my husband. Like you, he has never smoked, he was an athlete, watched what he ate, and only drank in moderation, yet he received the same diagnosis as you. That was six years ago. Since then, several disconcerting events have occurred. Shortly after his diagnosis, two of his male cousins also came down with similar cancers. One died within ten months of being diagnosed with acute myeloid leukemia, and the other is living with chronic lymphocytic leukemia. All of the boys were born in western Massachusetts, which was heavily industrialized 60 years ago. I am not an epidemiologist or a researcher, but for these three cousins to all be diagnosed in their 60’s with blood cancers has concerned our families.
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