Pat’s Place: Multiple Myeloma Burnout
Last week I shared how my wife, Pattie, and I were both experiencing a post-stem cell transplant let-down.
I am already starting to feel better about feeling better. I wish I could say the same for Pattie.
In addition to her post-transplant hangover, I believe Pattie is also experiencing “multiple myeloma burnout.”
Pattie isn’t very open about her feelings. So I was surprised the other night when she shared how difficult it is for her to deal with multiple myeloma 24/7.
I think I understand how she feels.
My life is consumed with all things multiple myeloma. I’m living it, writing about it, and helping other patients learn about and deal with it.
I didn’t choose to have multiple myeloma. But I did choose to make it a part of my professional life.
But Pattie didn’t choose any of this. I know if Pattie had her way, she would try and live a life as myeloma-free as possible. But for her there is no escape.
She works with dialysis patients, many of whom have multiple myeloma, during the day. Then she comes home to hear me talk about how I feel and how my day went, which typically includes emailing and talking with other multiple myeloma patients.
It’s multiple myeloma overload!
Now that she mentioned it, I’m a bit burned-out on the whole thing myself!
I tend to become consumed with my work. Before my diagnosis and new career as a medical writer and full-time patient, I worked 60 hours a week in real estate. And before that, I was a workaholic football and basketball coach.
This isn’t the first time Pattie has pointed out that I have become too focused and one dimensional. But this is the first time it’s all about life and death.
Getting too involved with my ballplayers’ lives—and how well my team was doing—isn’t the same thing.
I tend to turn my cancer into an academic experience. That helps me deal with the reality of my cancer.
But I’m sure Pattie is scared. Scared for me and fearful about what a life would be like once I’m gone.
We will be celebrating our 24th wedding anniversary next week. I think I will declare that night a “multiple myeloma-free zone.”
I think we could both use that.
Feel good and keep smiling! Pat
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Thanks, April! It doesn't help that I am so active in the multiple myeloma community. I'm so glad that I am. But in retrospect, would my wife/a caregiver agree if they knew it was going to consume their loved one's life? Good question, I think... But I wouldn't have it any other way! Pat
Excellent post and I hear you (and Pattie) loud and clear. A multiple myeloma free zone for a night is a fun idea.
The reality (unfortunately) is that because mm is a chronic and incurable cancer, those of us with it do live with it 24/7 and always will. It doesn't have to dominate every drop of life, but it is always there. And having just recently gone through an STC, your mm is probably nearer to the surface than before.
Be patient. And have a great anniversary!
Hi Pat,
I know exactly how you feel about Pattie. Tomorrow is my husband's MM 'anniversary'. It's exactly 6 years ago that he started his 1st chemo against MM before his stem cell transplant in 2006. My 'dip' came after his 'dip' when he'd been in isolation. It is, in fact, similar to what you and Pattie are experiencing now.
Six years have flown by and no matter what you do and think, MM always appears to be there in the background. Unfortunately his MM proved rather persistent and we have been visiting the hospital for treatments every week over the past five months. But we never give up! Life's too beautiful.
You're right, it is your/his Myeloma, but Pattie, I, and so many other partners of MM patients want to be there for them. And we're just as scared as they are. Like Pattie, I'm always active in the MM field, writing, taking, translating. But I want to, because it means sharing experiences and helping others. Despite the fact that it sometimes feels a bit too much.
Have a MM time-out and enjoy yourselves next week. You deserve it!
Happy anniversary!
Lia
Pat: It is extremely hard to deal with this, as a wife/caregiver, 24/7.....and we're really newbies. In just a little over one month, my husband will have his one-year anniversary, or milestone, with this terrible disease.
I've made it my business to learn everything I can, for both of us, and I put it into words on my blog. It's the best way I know to deal with it.
I'm sure Pattie is stressed, facing dialysis patients everyday, and then coming home to her own reality, at night. She has my admiration.
Please have a Happy "Respite from Multiple Myeloma" 24th Anniversary! We also like to have those days when we try to forget that MM is in our lives.
Keep writing......we look to you for info, advice, and smiles!
Sarah
Thanks, Lia and Sarah! I'm having an unexpected relapse of nausea this early morning... Reminds me of how bad things were a month ago. We can't take feeling good for granted, right? Pattie had a much better day today. One day at a time...
It does take a lot of time and energy, coordinating all of the friend and family stuff, doesn't it? It's just a lot... Thanks for caring, Lori!
Pat, it took me a LONG time to "recover". Dave didn't understand since he was the one being brutalized! But he was patient and kind. I just think I was on full blown adrenaline for over a year going through it, handling everything for Dave and keeping the family calm and balanced. When it was all over I just crawled away like a bear in winter and had a good long rest.
I had my one year anniversary June 2 of this year and after 2 SCT and now facing maintenance weekly for the next 3 years I have days when I just want to give up. I know this is part of the let-down after all the intense treatment, aside from the expense of the Rev-Vel-Dex, which is also depressing. What is a body to do???
I kind of liken the whole experience, now that I'm a ways out from it, to any goal attainment activity, although admittedly a life changing one. End of HS, College, a big event you have been planning and planning for, consuming your attention for a lengthy period of time. You cross the finish line and throw yourself over! It's often a happy time, you've made it. But then it's "Now what?" I was too tired to even contemplate something to pull me into the future. It took some real forgiveness toward myself and just let me rest until I was sick of all the resting! Once I started putting new things into the future it began to settle out.
Hi Bob-
I'm guessing from the description of you treatment history you are an UAMS patient...
It takes a lot of guts, going through Total Therapy. But I can only imagine how old it all gets. Plus two transplants so close together? That must be tough!
Hi Lori. Now what? Throw myself into my work/writing. My second book all about stem cell transplants from a patient's perspective (mine and others like Dave and those who have undergone allo's) should be published and available before year's end.
I love to write. I'm more than half way done with the first transcript--around 170 pages... Pat
Pat, best wishes on your upcoming anniversary. We had our 45th yesterday and there were many years that I didn't think we would see it. MM does occupy my thoughts frequently. Other times I forget all about it. Have you remembered to keep smiling? Linda
Pat I know just what you mean about obsession with all things mm! We have only been married 2 yrs at David's diagnosis (hes 72) and its my mission to keep him alive as long as poss! He gets fed up with my research and just wants a break from time to time. However it has helped us understand the illness more as we are in UK and dont always get the information we need from the NHS. Glad you are over the transplant and good luck with recovery.
Best wishes on your anniversary, Pat and Pattie! Just relax and take one day at a time...I found that walking outdoors with my I-pod stocked with good music to be helpful, but of course everyone has their own way of doing things. It is hard to be 'patient' sometimes, but I am sure you will be feeling much better soon.
Thank you so much, Linda, Ann and Nancy! Much appreciated- Pat
Happy anniversary Pat and Pattie
Great to hear from you, Sharon! Thanks much- Pat
What is this obsession with MM sufferers; talking about it, writing about it etc. It seems to be a very American thing, to the point of obsession. Would the same apply if it were colon cancer. I have never come across this in the UK. I have had MM since 2004, and an SCT in 2006. I was not going to let MM dictate my life. I am not interested in keeping tabs on my blood counts or comparing them to previous weeks, I don't see the point. My doctor will tell me when intervention is needed. I don't tell friends or the group I played Badminton with about my MM. I don't want sympathy, or to be asked how I'm feeling.
My wife died very unexpectedly in May 2010, within 6 weeks of being diagnosed with Pancreatic cancer, and 2 months before our 40th Wedding Anniversary. Although my wife drove me to my MM appointments I always saw the doctor alone. When having local biopsies I went alone by bus. I did not, and do not, want my illness impingeing on the lives of others, especially my children.
I have always been of a mind, that a trouble shared is a trouble doubled. I know we all deal with problems in our own individual ways. I do it my way, and most of the time MM is the last thing on my mind. I wish all fellow MM sufferers all the bet for the future,
and a Pat, a very Happy Anniversary to you and your good lady.
How very British of you, Tom. I understand exactly what you are saying. Part of this might be a difference between patients from the UK and in the US. You know, the British stoic thing vs the American talk a lot and share our feelings thing. But I believe there is more to it than that. One reason is American's like control. By being involved, I believe patients and caregivers feel like they have more control (They probably don't). More importantly, I believe we have more treatment options in the US than you do in the UK. Believe it or not, I pretty much tell my doctors what I want to do--not the other way around. A reason for this is the availability of five or six different treatment options. One thing is for sure: MM doesn't respect political boundaries or care what political party you belong to. It hits randomly and indiscriminately. I am going to be writing about that in this week's column. Good luck to you and all of our friends from the UK! Pat
This is a good read, as I seem to deal with post-transplant anxiety quite often. I'm 33 and in the last year half gone thru 2 auto-sct's and am in a CR. I am worried that regardless of how well I am doing or how great I feel, the MM will come back and rob me of my life. I'm currently on no maintenance, but do get checked every 3 months. It's quite a change to go from going thru treatment and then transplants to now nothing.
That is the most difficult thing about living with myeloma--knowing that it is probably coming back. Good luck. I share your anxiety! Pat
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