Northern Lights: Staying Positive
We just celebrated Thanksgiving this month here in Canada. It’s an opportunity for families and friends to gather together, have a feast of their choice, and pause to reflect on their blessings in life.
This year, I felt very positive, and I was grateful for so many things in my life.
I felt very different in the autumn of 2009 when I recently had been diagnosed with multiple myeloma. I was depressed and in a mild state of panic. It seemed a tall order at the time just to function somewhat normally, even if at a slower pace, making allowances for chemo brain and issues relating to injuries and side effects of the drugs I was taking.
One doctor told me that multiple myeloma could be a chronic disease, but it was difficult for me to believe. My family and friends rallied around and tried to cheer me up.
Over time, though, I realized that I would rather be a positive person than negative. I also realized that I could not be an effective family member, or get my work done, if I had a lot of negative thoughts. My family life and work mean the world to me.
My panic subsided as I started to study and learn more about multiple myeloma. I clung to every fact that might indicate a longer prognosis. That helped to keep me in a positive frame of mind.
I also found that exercising put me in a more positive state of mind (probably due to the endorphins that exercise releases). I do a lot of walking, and I vary it around to keep it interesting. I walk with family and friends, with my grandpuppy, or with the grandchildren to a playground. I even walk to a pancake house to have breakfast with my 91-year-old father. If I walk by myself, I listen to music, which also lifts my spirits.
I think that being older now may give me some advantages. I have a lot of really good memories to look back on, and they help me to stay positive. I only have had eight years of worrying about myeloma, after all. That corresponds to 12 percent of my life to date. And even in the eight years I've had myeloma, only half has been spent receive treatment for the disease. I was taken off of myeloma treatments in order to get through my breast cancer treatments in September of 2016, and I haven’t needed to go back on treatments yet. Also, after the first year and a half of myeloma treatment, I enjoyed 3 1/2 years of not being on treatment, until I relapsed.
I also have to admit that it’s a lot easier for me to be positive right now when I am not taking any medications, such as dexamethasone (Decadron), that could alter my mood. When I took dex, I frequently experienced moodiness, and that was a problem not only for me, but for people around me too.
I also have learned that, when I am taking dex, I need to ensure that I get enough sleep. So I did take a sleeping pill of sorts, called trazadone (Desyrel). Trazadone is a nonaddictive antidepressant that causes sleepiness. I’m sure it helped keep my spirits up while I was on treatment.
In addition, I’m now pursuing activities that I do ‘for myself’, which include singing in a choir and having fiber arts hobbies, to help me to be in a positive frame of mind.
All in all, staying positive right now is not a problem. However, I don’t like to “borrow trouble,” to use a well-worn phrase. If I could just stay in this limbo of being in remission indefinitely, that would be wonderful. If not, I trust that my myeloma specialists will help me to fight this disease.
What do you do to stay positive while facing multiple myeloma, either as a patient or a caregiver?
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The quotation for this month is from Paulo Coelho de Souza (1947 - ), a Brazilian lyricist and novelist, who said: "When you are enthusiastic about what you do, you feel this positive energy. It's very simple."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Nice column, Nancy. When I was first diagnosed, I was depressed and shocked, to say the least. During my years on treatment, I think dex was especially hard, as it is for most people. I have been very fortunate to have been off all myeloma drugs since June 2016. I walk every day, in any weather conditions. I think that has been the greatest contributor to staying positive.
Hey Nancy,
I may have to look into Desyrel. I am on Velcade, Revlimid, and dexamethasone, and dex is the challenge. I have tried over-the-counter sleeping aids and none work for me. I take my dex in the evening following my Velcade shot. That first night I can sleep, but the following day and night I am "up" and cannot sleep. The effect usually wears off after 48 hours so that it is only one night that I am really impacted.
With respect to staying positive, I work, have family, especially grandchildren, and hobbies. Of course exercise, my biking, is a big part of it. Goal setting and working to reach those goals. I recently took up the guitar. I played one 35 years ago, but went away from it, but got my old guitar restrung and started playing. I sing in my church choir as well, so music is very central to me. Staying active and involved is key.
Thanks for the comments!
Christine, I agree with you that walking is a great exercise and it's so nice to get outdoors too. There are very few 'weather days' here, if you have good footwear and clothing. It was hot last summer but people walked earlier in the morning. Then if it is really cold, one wears layers of warm clothes to stay warm. If it is too cold even for dogs to walk outdoors, or if it is too windy, I call it a weather day. Good luck with staying in remission!
Ron, sounds like you have a balanced lifestyle. The grandchildren will enjoy singing songs with you too! With the trazadone (I took the generic version I think), I found that just taking it two nights a week was enough to counteract the effects of dex. I still get aches and pains relating back to fractures I sustained 8 years ago, especially if I am really active, so sometimes take a 'Tylenol Night Time' pill for that, to help me sleep. My family doctor tells me not to overdo the pain meds if possible, so I try to moderate my exercise so as not to need that often. I also last week got a cortisone injection into one thumb, since I had injured it out gardening! So small issues are ongoing, but that is normal for 'aging'.
Great article. Those words of encouragement to yourself are great for us all. I'm starting an exercise program asap! Also, it is wonderful to hear you have survived multiple myeloma for 8 years. (I pray & wish you many, many more!!).
Thanks Dottie, for the nice comment. I hope you enjoy the exercise program that you choose too.
Thanks Nancy for another great column. I am still pretty much a newbie at multiple myeloma but am coming up on my first year anniversary since my diagnosis. There are highs and lows, but I have come to accept things. I am not sure I can promise myself it will always be so, but staying positive is my mantra.
Colin, that is a good mantra to have! If you are positive, it will help you to think more clearly when it comes to this illness too. Hope you are enjoying autumn!
Nancy, thanks for asking the question - what do you do to stay positive? I've been thinking about that a lot lately. When I feel overwhelmed with the circumstances of life, I carve out some alone time to recharge my batteries. I know myself well enough to know that I can't be a good source of light for my husband and others if I'm burnt out myself. Often it's something small - a pedicure or a couple of hours reading in a coffee shop, but I've found that this caregiver needs to care for herself occasionally too. Wishing you the best!
Those sound like nice small ways to care for yourself, Tabitha!
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