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Pat’s Place: Improving My Quality Of Life
By: Pat Killingsworth; Published: May 2, 2013 @ 9:06 am | Comments Disabled
“Your myeloma is stable.” Short, sweet music to my ears!
I’m not sure she realized it, but my myeloma specialist had just opened up a world of possibilities for me.
Two years ago, I relapsed for the first time. After taking a year-and-a-half to finally achieve remission again, all were concerned when I relapsed after ten short weeks. Now, after three months on Velcade [1] (bortezomib) and dexamethasone [2] (Decadron), I waited to find out if that basic combination was enough to stall out my myeloma’s active return. It was.
Dropping Revlimid [3] (lenalidomide) from my chemo cocktail had already markedly improved my quality of life. My red and white blood counts were at or near normal. My platelets had recovered. And I felt better than I had in years.
So now what? Since Revlimid previously kept me in remission for four years and Velcade is now working, it seems a likely possibility that one or both of the related novel agents newly approved by the U.S. Food and Drug Administration, Kyprolis [4] (carfilzomib) and Pomalyst [5] (pomalidomide), will work if and when I need them in the future. So, I began to focus on ways to improve my overall quality of life.
Planning, plotting, and readjusting; that is an informed multiple myeloma survivor’s lot in life. But after six years, a guy can get pretty good at it. I’ve had a lot of practice!
After reading my last two columns, you may be a bit surprised at my hopeful, optimistic tone. You shouldn’t be. For me, it would be difficult to plan for future contingencies without realistically facing one’s mortality. But that doesn’t mean I was ever pessimistic or depressed – not that there’s anything wrong with feeling that way.
But I’ve always been an optimist. And I was wedded to deferred gratification and sacrificing for tomorrow – until living with multiple myeloma helped teach me to live for today instead.
Living for today doesn’t mean one shouldn’t plan for tomorrow. Stable myeloma – and the fact that I now know I respond well to the two main types of myeloma drugs – hopefully makes it possible for me to plan more than one or two years out.
Which brings me back to my quality of life. Myeloma-related damage has left me with more than my fair share of daily aches and pains. Like many of you, my lower back is a problem. But so are my right knee, right hip, neck, and ribs. Oh yes, my peripheral neuropathy (pain, tingling, and loss of sensation in my extremities) is no walk in the park, either.
So where should I start? Of all my ailments, my right hip negatively affects me the most. A pair of golf ball-sized lesions in my right femur and yet another just above my hip joint may have accelerated degenerative arthritis in my joint. Several doctors have admitted that using dexamethasone over extended periods also probably hasn’t helped. Regardless, I’m left with a hip that won’t allow me to walk more than a few blocks without painfully heading for home.
So why not start there? Hip replacements have become routine. And I’m hoping that replacing my hip joint may help the alignment of my right leg and take stress off my right knee, which also bothers me from time to time.
My God! I sound like a wreck! Truth be told, I often feel like one, too!
With my myeloma stable, my wife Pattie’s support, and my myeloma specialist’s blessing, we have scheduled my hip replacement surgery at Moffitt Cancer Center on May 1st. A well-respected orthopedic oncology surgeon will be performing the procedure.
I’m writing this column ahead of time, anticipating I might still be in La La Land when it runs May 2nd. Have no fear; I will let you know how things have turned out by answering your comments and questions here and in my June column.
Wish me luck! Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [6].
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2013/05/02/pats-place-improving-my-quality-of-life/
URLs in this post:
[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[3] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[4] Kyprolis: https://myelomabeacon.org/tag/kyprolis/
[5] Pomalyst: https://myelomabeacon.org/tag/pomalyst/
[6] here: https://myelomabeacon.org/author/pat-killingsworth/
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