Pat’s Place: Improving My Quality Of Life
“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 (bortezomib) and dexamethasone (Decadron), I waited to find out if that basic combination was enough to stall out my myeloma’s active return. It was.
Dropping Revlimid (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 (carfilzomib) and Pomalyst (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.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
My prayers are with you Pat...Hope you are fine after surgery..Always enjoyed your columns..God Bless..
Good luck and God Bless Pat.
Thank you for taking the time to write this article in anticipation of your upcoming surgery. I read all your articles and always enjoy them. I truly appreciate the honesty and support you provide to so many. My son (39 years old) was diagnosed with Smouldering Myeloma last year (MGUS two years ago). We are still trying to wrap our minds around what this may mean for his future.
I wish you the best of luck in your hip surgery and a speedy recovery. Hopefully, you will find your mobility and general comfort level greatly improved within the next few weeks. We will keep you in our thoughts and prayers in the up coming weeks. May God bless you.
Right back at you, Sandra! Good luck to your son--I understand how difficult adjusting to a new normal can be! I've written elsewhere a play-by-play account of yesterday's surgical experience; here are a few highlights; or should I say "lowlights...":
The next time I saw Dr. Cheong it was almost 5 PM. I want to remind you that my surgery was scheduled for 1:45 PM. Around 4 PM the waiting room manager had stopped-in and apologized for the wait. She said, “Dr. Cheong and his team have run-into some complications.” and that it had been a “particularly difficult surgery.” She said he would be ready for us shortly.
At that point Pattie and I started discussing contingency plans. “Do you think its possible they could cancel my surgery?” I asked. “Don’t even say that!” Pattie exclaimed. We had driven over an hour to get here, Pattie had switched her day off and I hadn’t eaten – or had more than a swallow or two of water to take a few pills – since last night. Oh, and like I posted yesterday, they wouldn’t let me take any pain meds, either.
“I’m not sure I even want him to operate at this point.” I added. “He’s been cutting since 7 am, and this is elective surgery. Why push it … ”
“Is there even anyone still here?” I asked. Pattie stuck her head out in the hall. It was dark. None of the hustling and bustling activity from earlier in the day. No on was there at all. “If someone comes-in and starts mopping, we’ll KNOW they forgot about us!” I joked. “Wonder if THAT’S ever happened before…”
Since no cell phones are allowed in pre-op, Pattie would leave every half hour or so to call and text friends and family so they wouldn’t worry. But let’s cut-to-the-chase. Dr. Cheong wasn’t smiling when he sat on my bed and placed his hand on my leg. Sorry. We ran into some complications with the previous surgery.” “Did you lose the patient?” I asked. Dr. Cheong cracked a smile for what what might have been the first time all afternoon. “No.” He said with a chuckle. He continued, “We could still operate today. But even if we do, there aren’t any hospital rooms available when we finish.”
Really? First we’d heard about that! “I already have several patients waiting in post-op for rooms. One of them has been there since before I saw you around noon.” He added.
Pattie and I felt like we had just learned that our late evening flight had been cancelled. Except we already knew these guys couldn’t comp us a room! But it gets worse.
“If we postpone, I don’t have any room in my surgical schedule for weeks.” Dr. Cheong lamented. “But if you’re free Friday, maybe they would let me squeeze your hip in after I operate at noon. Its a particularly tough surgery, so its the only one scheduled.”
Dr. Cheong hurried-off to check if that was even possible. Before we could begin playing the “what-if” game again, he returned smiling. “Here’s what we’ll do. I’ve bumped that difficult surgery back and you can have the noon slot...”
It's true. My surgery has been delayed until Friday. I'll update everyone as soon as I'm thinking clearly afterwards.
Way to go, Pat. Praying your surgery went well and the rehab will have you better than normal real soon. God bless you and Pattie.
thanks for the insightful column, Pat. hope that your surgery goes really well when it gets rescheduled! sometimes delays do happen to routine surgeries when a complication in another one causes delays, or an emergency surgery needs to be performed. best wishes!
May the peace of God, which passes all understanding, be with you Pat and Pattie!
Julia
Pat, I thought that only the military hospital worked that way. I guess I was wrong. I hope all goes well. My hip is bothering me as well, and I only have 2 years in remission so far. Also, I got laid off from work after 13 years at the same job. So, I am taking early retirement to heal and rest and enjoy my remission for now.
I look forward to hearing how the surgery went, as I may be looking at that or kipherplasty for my spine. Not sure which will come first, but one will have to be done soon.
I will check on you as the days go by to make sure you are doing well. I will pray for you and your family. You give me so much positive support with your column.
Thanks everyone! Mary, I should be a good test case for you. I needed both the hip and back done. I chose the hip. Sometimes its hard for me to tell where the pain originates. Guess I'll find out! I will do a follow-up column next month.
Hi Pat, I hope tomorrow is a better day for you and your surgery proceeds without a hitch. I thought we were going to get together for lunch before I leave for the north. Take care of yourself.
All the best for the surgery.
Pat,
I've had full joint replacements in both my shoulders. Arthritis made them worse from too many cortisone shots. Both shoulders were a mess according to my surgeon. Full recovery was about 4 months. Of course they were not done at the same time.
I only mention my shoulders because I know quite a few people that had hips done, and they were up and walking the next day. My mother in law had both hips done when she was in her early 80's. She's 88 now and walks a few miles a day. She never had any problems. In fact everyone I know that had hips replaced did very well. No complaints that I know of, or heard about. My shoulders give me a lot of pain when I sleep on them. After all the success I hear about with hip joint replacements I wish I had my hips done instead of my shoulders.
You'll be fine and up and walking as soon as you're out of the recovery room.
Best regards and God bless you, Pat
John
Pat,
With your knowledge and attitude, you will be an inspiration to many through this QOL decision. Isn't Quality what life is all about anyway?!
Thanks a lot, John; no pressure! Now I know I had better do at least as well as your 80+ year old mother-in-law did! Kidding aside, to say I'm touched by everyone's kind words and support is an understatement! And yes, Van, it is all about quality of life. I plan/hope to be around for a while, so wanted to be able to get around! I'll check-in several times tomorrow...
I've had a couple of good friends had hip replacements done. They truly are as good as new with no side effects whatsoever. Best of luck to you Pat and I hope you are back in the writing saddle soon.
All the 'hip' stuff aside: I was THRILLED to read about the status of your MM!!!
Great MM news! And best wishes for a speedy surgical recovery, just in time to get out and enjoy the warmer weather...
Surgical Update: Sounds like everything went fine this afternoon. And from the pain and stiffness on my right side, my guess is I have a brand new hip! I forget to press the magic red button on my pain pump; nothing really hurts until I move. Then, watch out! But pump does make a difference. I'm concerned about cramping. Both legs are doing a lot of that. If I get one of those long and deep leg cramps--where the only relief is to get-up and walk--I'm going to be up a creek without a paddle! Nothing I wouldn't have anticipated. I'm feeling even better than I would have thought, come to think about it. But I know how this stuff works; the second day is always the worst once last of the anesthesia wears-off. Thanks for your kind emails, texts and phone calls! Unbelievable energy!
Pat --
So glad to hear your surgery went well. Even though my husband passed away from an aggressive form of myeloma, I still feel part of this community and keep tabs on all of you. On a selfish note, though, I am very interested to hear about your hip replacement as apparently, this is in my near future as well! Just have to decide when. Hope your recovery goes smoothly.
Pat, glad to hear that you finally did have the surgery and that early indications are that it went well. Best wishes for a speedy recovery!
Thanks, Mike! So far, so good! I feel a lot better than I did going through my stem cell transplant.
Go boy, go!
Pat, thinking of you and sending prayer. Judy
Hello Everyone! I'm up and walking. Off Dilaudid - which worked great for me - and back on Percocet. I'm sore, but this way I don't need to be hooked-up to an IV. If it wasn't Sunday I would be going home today. But I'm guessing it will be tomorrow. PT isn't working and I don't have a discharge and rehab plan yet. Guess I'll get to hang-around and be waited on hand-and-foot for a while longer...
Hey Pat, it is wonderful to hear that you are back in remission and that your surgery went well. I just got out of the hospital for 5 days with the flu, after I had 2 flu shots last year and 2 more this year as my new shoot schedue required after myn transplant. It aways seems that all us MM patients are always getting up after being knocked down. I'm glad you are on the "getting up" stage. Great News!!
Pat: Thanks for the update. Your paragraph on "aches and pains" could well have been me, describing how my hubby feels. He is also in remission, but he didn't seem to get a "no pains reward" with it.
Much luck with your hip replacement, and prayers for continued remission for you (and us)!!
Sarah
Wife/Caregiver to Bob
Great news Pat, more power to you as you get on with your life.
Yep. Hills and valleys. This "valley" was my own creation, but it will hopefully allow me to stay more active for years to come. And I've learned a lot. I will share those thoughts--and provide a post surgical analysis first Thursday in June.
Hi Pat. I am so glad to hear that you finally have your MM in remission. I know it has been a LONG 2 years since your transplant. Even though I was in remission with my 2 transplants, It has taken over a year to get my Revlimed dose stable. I have had so many problems, including catching every virus known to man! I was sick at least every 2 months, sometimes, every month. They kept lowering my dose and they have finally found the perfect dose! I am on 5mg for 21 days and then off for 7. That was the way I started before my SCTs. I have been feeling much better and when I was at Moffitt this week, I told the Dr. that I feel better than I have in years! I have not been sick since Feb. and just got back from a 2 week transatlantic cruise with no problems (other than the neuropathy and balance and tiredness thing).
If I had known that you were at Moffitt this week, I would have come to visit you. (If the Dr. would let me.)
I hope things continue to go well for you and Pattie. Jack & I think about you often.
Hugs,
Barb
Great to hear from you, Barbara, and glad you are doing so well! I was in and out in two days. Friday and Saturday nights. Went home 6 PM on Sunday. Doing fine. Please keep in touch!
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