Pat’s Cracked Cup: Living With Multiple Myeloma And Quality Of Life
This week’s Beacon forum poll asks, “How does your quality of life compare to your quality of life prior to your multiple myeloma symptoms and diagnosis?” There is still another day left for people to respond to the poll, but so far, “moderately worse” seems to be the leading answer.
I answered “significantly better.” How can this be? I often feel aching bones and less-than-boundless energy, and although I require more sleep, I have a harder time falling asleep. These symptoms are really quite minimal — The more I pay attention to my health and every other aspect of daily life, the better I feel.
Although I considered myself to be health-conscious in my life before multiple myeloma (BMM), it became clear in my life after multiple myeloma (AMM) that I had been fairly clueless. My health had likely been deteriorating for years leading up to diagnosis — I just did not notice.
Any moments of feeling unwell take me back to my AMM “couch days.” Earlier this week, I experienced symptoms of a summer cold — achiness, a bone-wracking cough, and congestion. Surrendering myself to the arms of my cozy sofa to consume fluids and rest was the start of a cure.
Retreating to the sofa brings up a mix of unsettling dread and an odd sense of familiar comfort that eventually became part of my myeloma recovery and healing.
The cold was a small setback in my vacation plans, but after the day of rest, I was on the road to visit an old friend. I now sit — in awe — staring out into lush green of the Catskill Mountain region.
During my drive here, MapQuest instructed me onto a bridge over the Hudson River. I faced a black pillar of smoke as I drove across and the traffic came to a dead stop. After waiting half an hour for the crisis to resolve, I reluctantly joined several others in circling around to exit this dilemma. Without a revised MapQuest route, GPS, or smart phone, I was left with an old-fashioned paper map.
Once my initial panic subsided, I somehow managed to work my way through winding country roads of this unknown landscape to my destination, a remarkably beautiful place. This is how I live my AMM life — without a clear plan — instincts take me forward into uncharted territory. Multiple Myeloma has sent me on a curious detour.
In a couple weeks, I am having the first solo art show of my career as an artist. I had put aside such notions long before I was diagnosed with multiple myeloma. Allowing creative work to have a priority in my life has led to interesting changes. I have been hard at work putting this together. The sense of completion and wellbeing I have experienced while engaging in this endeavor have been a shot of good medicine.
The medical community places great importance upon “health-related” quality of life. Separating health from everything else is like rating your vacation experience on only the comfort of the bed you sleep in. The smells, sounds, meals, activities, and company are equally important.
Whenever I am asked to separate out the bare physical effects, I know that only a partial story is being told. My true experience is holistic. My quality of life with multiple myeloma is impacted by my finances, mental state, social life, and environment. My physical health cannot really be viewed alone.
I was recently involved in a planning meeting with a group I belong to. I told them I was unable to commit to a labor-intensive event for next spring. Someone said, “Well, any one of us could be hit by a car between now and then.”
My unwillingness to agree is simply a matter of allowing for detours — keeping my time free to respond to the subtle calls to intentional living. Rest on the couch. Take a trip. Make a painting. Prepare a special meal. Write a story. The options are endless. Quality of life is a combination of feeling well or experiencing symptoms as manageable and having the ability to exercise a fair amount of free will.
A friend recently posted an announcement regarding the death of a loved one: “While condolences are customary, I ask that instead you take a moment to contemplate how precious and unique life is and honor it by living it as such.”
Quality of life is living with intention and appreciation — living with possibility.
Pat Pendleton is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Such ardent true words. We MMers are so caught up in the diagnosis/disease that we may fail to look around. The outrageous series "The Big C" showed me one thing: get out of your comfort zone when you can, while you can. So I will board a plane next week, without a lot of vacillating, and go to Warsaw to visit my mother's family I've never met. While I feel good, while there's no treatment on the horizon any time soon. Just get off the blue couch & go.
You've said it best in your column. Good luck with the art show.
How brave of you, Suzanne. I also enjoy the outrageousness of The Big C. Go meet your relatives--Happy traveling!
Congratulations on having an art show, Pat! That is truly inspirational and I hope it is successful too....good for you! If I lived near Buffalo I would have a look at it.
Pat - Congradulations on your art show! Do you have a web site or facebook page where we can see photos of your art?
I always like the balance of our writers columns - some technical others more philosopical. Initially I was consumed with finding out data and technical information after my diagonsis. Now my MM is accelerating big time each test and visit. Even so I am now more focused on quality of life and living each day as it comes. When you said "significantly better" I understand. Initially I was driven by fear and consumed trying to understand why...now why is less important to me now. I have accepted it is what it is. I am not giving up on life; more of an acceptance to learn to live the life I have been given "warts and all" as best I can every day.
Pat - a very well written column. One of the ultimate truths in life is life will end. While most people are blissfully unaware of the inevitability, those with a cancer diagnosis and their loved ones have the misfortune of having it thrust upon their face. In business, there is a term called sunk cost fallacy. Its students are warned not to fret over what has been spent. Rather they should focus on what is to be gained in the future. The same goes with life. While we are humbled with the diagnosis by a higher being and swing in the vast ocean like a boat at the mercy of every whim of the wind, we should still enjoy to the fullest the freshness of the air and the brightness of the night sky as long as the darkness still gives way to the rising sun. Pat, way to go!
Pat, where and when is your art show?
Very, very nice. Well-written. I answered the poll the same way, incidentally--my life AMM is qualitatively different and better, despite living with MM every day.
Thank you for interest in my art endeavors. Find out more at
http://www.patpendleton.artspan.com.
A wonderful, inspiring column. I'm almost a year out from my ASCT (it went relatively well... not complete, but significant reduction in cancerous cells. Yay!), and have sort of become complacent about my life situation. Indeed, it is that complacency that would have had me vote "worse" had I seen the survey. And the fact is that overall, that really is not the case. I am a lot freer in some ways now than I was before... knowledge and a sense of certainty are quite liberating in a way, are they not?
I will take some time, thanks to you, to consider my life and resolve to be less acquiescent about my life... thanks for that!
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