With myeloma, sometimes it’s just mind over matter

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When I was first diagnosed with myeloma in January 2012, my treating oncologist had me on a regiment that included insane amounts of Dex, along with Revlimid and a whole host of other drugs, none of which I can remember anymore. Rather quickly, I started feeling horrible. My voice changed dramatically. And I literally felt like I was floating when I walked around. I would take my daughters to school, or go to the grocery store, and it was a huge struggle. I dreaded mornings. I would wake up, climb up a few stairs to the family room and feel like I was going to pass out. I called my doctor’s office and spoke with a nurse.

“Why do I feel so terrible?” I asked.

I kid you not, she started laughing. Like really laughing out loud, and this laugh lasted longer than I was comfortable with. How was any of this funny? Finally she said, “You have myeloma!”

Ok…

“As a myeloma patient, you just really need to prioritize what you must do and plan for it. Rest up for it. And the rest of the time, stay home and rest.” And that was it.

I finally was able to get my insurance switched around and became a patient at the Huntsman Cancer Institute at the University of Utah in Salt Lake City. At my first visit, when he saw the list of drugs I was taking, he said, “How do you feel taking all that Dex?”

“Is that why I feel so horrible?” I asked.

“It doesn’t help. We are cutting that back by more than half.” And it did help. I was still on all kinds of other meds and I still didn’t feel well, but the Dex was a killer.

And so I simply had to talk myself out of feeling the way I was. For example, I might have felt like I was floating, but I wasn’t floating. I might feel like I wanted to pass out at Costco, but I knew I wasn’t. And I mastered this concept. I’d tell myself “this isn’t real, it’s just the drugs playing mind games on me. I will win.” And, yes, it often took the joy out of many things I wanted to do because all my energy was spent trying to talk myself out of crawling into a ball and not moving, at least I was able to go out and about.

Here I am, some two years post tandem stem cell transplant and I still have those moments where I feel awful. Usually it’s Sundays or Mondays. I take Dex-Velcade as part of a two-year maintenance plan. When I crash from Dex, I can feel extreme fatigue. And when I’m that tired, my brain doesn’t want to work either. Everything and everyone annoys me. I’m just… fatigued beyond belief. But since fatigue can be unpredictable (sometimes I have no fatigue at all, sometimes I have fatigue on unexpected days), I have to role with the punches and, at times, talk myself out of it. On Fridays, which are the days I take Dex, I usually have incredible amounts of energy. But this past Friday was an exception. I was so tired that after my infusion appointment, I had to go home and nap. I never take naps on Fridays, that was weird. And on Saturday, I felt so fuzzy and tired. By evening, though, I had plans and I wanted to go out with friends. So I did. I got dressed up and off we went. I felt awful the whole night, fuzzy, tired, and a little light headed. I had to talk myself down from those feelings so I could do what I wanted to do.

Today is my mom’s birthday. I wanted to sleep all day. I didn’t. I went to lunch and did some shopping with her. These moments are important. Life happens every day and I want to be part of it. Since I’m in remission and nothing is “wrong” with me per se, I feel like I can push myself. Rest and nutrition is important. But every time I push myself, it’s my way of not allowing myeloma to control everything I do. It already has controlled so much, too much.

I might feel fuzzy today, but I just looked at myself in the mirror. Nope, I’m not fuzzy. When I feel like I’m floating as I walk down the aisles at the grocery story, I know I’m not floating. Each step I take is on the same floor that everyone else is walking on. I’ve gotten better and better and talking myself through reality. Let’s hope it continues.

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About Author

Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. “To the extent I’m able, I want to prove that despite life’s biggest challenges, it is possible to survive and come out stronger than ever,” she says.

12 Comments

  1. That’s the way, just talk your way out of it…..the diarrhoea, the pain, the shivers, the gut pain…it’s all in my mind, I should have known.
    How about talking to us about the bad days, the days we all have but some writers won’t acknowledge due to the ” warrior” syndrome plaguing many sites.
    It’s not so bad telling us of your bad days, failings, crap days and pain……loosen up with the heroic lines and join the majority who can’t cope, feel hopeless and look to the day it ends.
    Next you,ll be telling us it’s the best thing that’s ever happened

  2. Tim, There have been days that my being sick prevented me from doing anything. That said, on a daily basis, I have taken the “warrior” approach. I will do my best to look this disease in the face, fight it hard, and spit on it when I’m done. In the symptoms I write about in my article, I determined that I could press on, as opposed to sitting on the couch. In fact, I discovered that if I did sit on the couch, my symptoms never got better, but if I got up and moved around, my symptoms got better. I discovered this while on vacation. On the days we were on Amtrak, I felt horrible– fuzzy, buzzy, tired, and out of sorts. On the days we were site-seeing and I HAD to get up and move, my symptoms almost disappeared. Had I not pushed myself, I never would have known this. Everyone must decide for themselves what is real and what is mind-games, what they can push through, and when they must be in a hospital and everything in between. I met a patient during my SCT who, after a week, still could barely drink anything (needed IV fluids) and could only eat some cottage cheese.

    As a myeloma warrior, I do my best and press forward. The alternative, to me, is simply not acceptable. I have learned so much about my body, my physical abilities, and my mental capacity. I wouldn’t wish cancer on anyone. That said, have there been blessings that have come as a result? YES.

  3. Lizzy, you are doing just great, it’s seems to me you have the same attitude as my husband, “as long as I breathe I will fight every step of the way”. My husband is four years since diagnosis, he was back working full time 4months after his SCT, (he’s a joiner so he does a manual job) he never had a choice we needed to live. Every 4weeks his bloods are checked and he has a Zometa infusion, he suffers from fatigue
    most evenings and Sundays but he never ever moans.
    He is terrified of his Myeloma, he worries every time his bloods are done, each visit with his Heamatologist/Oncologist stresses him out but he will always remind me “this bstd won’t beat me without a fight, and I will fight it daily”.
    I see him most definitely as a Myeloma Warrior, each Myeloma Patient is different and each has their own story to tell but for us these stories let us know we are not alone, somewhere out there somebody else is living the same life as us.

    • What, there is no such deity…..why does it assist you and not others, show me the chapter in any myeloma guide mentioning this creature. Easter bunny, Santa and god…all as helpful to myeloma as the other.
      We have a large movement around the world awakening to the scam and money grab that is religion….it is fanciful to think a god can bring the disease and then selectively cure some and not others.reply and explain

  4. My husband had multiple myeloma for 10 years and then got lung cancer for one. I’m so proud of him and all of you who have it for fighting such a terrible disease. I can’t imagine going through all of this but I am so proud of all of you who do. I love reading what everyone has to tell me about it as it makes it easier for me to understand what he was going through. They have so many new drugs now and I’m sure if he wouldn’t have gotten lung cancer he would have been able to keep on going by trying some of them. We had excellent myeloma specialists. I just had to comment when I read this, with a tear in my eye, as to how proud I am of all of you.

  5. I am close to 100 days post transplant and doing well. My biggest obstacle right now is neuropathy in my feet. My Oncologist said it is temporary and should get better with time. He first recommended Methadone, but after taking for a month or so, I could not eat or keep anything down. I am now taking Gabapentin 300 mg. three times daily, it is better, but still have a lot of difficulty particularly at night. Has anyone else experienced neuropathy and gotten relief from another drug without side effects?

    Nancy

    • I have neuropathy in my feet, particularly my left food. I do not take any meds, however. It’s not as extreme as I hear others, however, some tips that help me are: 1) I never go barefoot. Even at home, I either wear slippers or fuzzy socks; 2) I get foot massages (actually, those massages come with a pedi). Stimulating the nerves helps a lot; 3) I use peppermint essential oils every single morning to help stimulate my nerve endings. I put a quarter-size of coconut oil or olive oil in my palm and add 3-4 drops of a high grade peppermint oil (try http://www.doterra.com or even go to your local health store), and rub it into my feet and calves. Best of luck!

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