Mixed-in with a lot of new research teasers from the upcoming ASCO meetings in Chicago, a number of significant and touching eulogies and several inspirational stories of myeloma warriors like you and me, I thought I would share some thoughts from readers about myeloma philosophy.
Not just a treatment philosophy–although that’s a big part of it. No, reflections about how to deal with the psychological aspects of living with our relentless cancer.
Let me start. Short, simple–and then I won’t have to follow some of the more brilliant suggestions to follow over the next week or two.
Last night I attended my local Nature Coast Multiple Myeloma Support Group Meeting. One of our co-leaders, a caregiver named Dianne, has had a lot of serious challenges in her life lately. How is she coping?
After 7 years taking care of her husband, she shared their secret. They don’t follow her husband, Herb’s numbers very closely. Just trends. He isn’t on maintenance. With a bad heart and hip, he often has other, more pressing health related issues.
“RELAX!” She told us. “If things get worse and Herb needs treatment, we will deal with it then. “We don’t obsess about myeloma. 7 years of experience has taught us that!
Easier said than done, Dianne! But experience sure does help. And how wonderful that her older husband (Sorry, Herb!) is doing so well after 7 years!
The second of three co-leaders in our group, Richard, takes the opposite approach. He follows his numbers regularly–using softwear provided by Florida Cancer Research and the IMF’s Myeloma Minute to help him follow what’s going on.
Richard is a huge baseball fan. Keeps score at games and he’s really into stats. He shared with me that he follows his myeloma numbers like he is keeping score at a ballgame.
I’m the third co-leader of our group. (Since no one gets paid, we all get titles!) I actually fall somewhere in the middle. You bet that I’m consumed with myeloma–just not my own. I might as well be writing about the weather. I keep a lot of separation between what I write and those I help–and my own cancer–at least most of the time.
I don’t track my numbers very closely. Sure, I know if my M-spike is going up or down. And I need to be careful. I tend to develop lesions if my M-spike rises above a paltry 0.5 or 0.6.
My philosophy: We are responsible for our own, best care. So become an involved and informed patient.
Like Dianne, don’t overreact or allow ourselves to be rushed into a new therapy.
But unlike Diane, invest time and energy to create and manage a comprehensive healthcare team. So take a step back and take some time to gain perspective–then get a second opinion.
I almost forgot…Richard is a big second opinion guy, too.
So there you have it. Three different philosophies about how to manage our ongoing struggles living with multiple myeloma.
No right or wrong. Just different.
My important advice: Pick a style you are comfortable with and STICK TO IT!
Like the stock market. Buy and hold. Or jump in and out. But don’t overreact and jump in or not if it isn’t part of your investment plan.
To me, dealing with myeloma is the same way. It’s hard–no very hard–to sit back, watch and wait. But if you can do that when the myeloma is under control, try to do that after it starts to creep-back and become active again.
Not jumping into a panicky therapy change–like a stem cell transplant–might just buy you an extra 6 or 8 months of precious life!
So give some thought to what type of myeloma philosophy you are comfortable with–and then try and stick to it! Try and match it to your personality and style. You may just end-up living a longer, better life if you do.
Later in the week I will share myeloma philosophies from some other patients and caregivers. I hope that you will give this some thought when you get a chance. Denial is a dangerous game in the world of multiple myeloma!
Feel good and keep smiling! Pat