Northern Lights: Our Myeloma Journeys Involve Change
We are having a real winter this year, and right now there is a lot of snow everywhere. It is very pretty and fun to walk around in, but has caused problems with traffic and meant that my husband is doing lots of shoveling. I used to shovel the walks, but had to give that up after my multiple myeloma diagnosis in 2009. I used to like gardening too, but nowadays I can only do light weeding, planting, and watering (no mowing or digging). As much as I enjoyed doing outdoor home maintenance, weight lifting restrictions have forced me to be cautious.
Since my multiple myeloma diagnosis, lots of other things in my life have occurred – some good, and some more frustrating to me.
This is my sixtieth column, and I thought I would look back on how my diagnosis has changed my life. I asked family and friends how they thought I had changed due to having multiple myeloma.
Back in 2009, I got jolted out of any complacency about having good health and sailing into a clear blue horizon of retirement. In fact, I was challenged to learn a whole lot about a blood cancer I had only heard of slightly. I didn’t know much about any blood cancers, but got myself on a self-study course of lifelong learning at that time. What I learned was fascinating, and I could forget that I was suffering from a faulty immune system as I learned more about that.
My oldest sister thinks that I have honed my grasp of the science of multiple myeloma, thanks in part to my undergraduate degree in microbiology. She observed that I have become keen to learn more information, rather than becoming overwhelmed by it. This process has helped me to get a better understanding of multiple myeloma treatments. Now I can even read the scientific papers that are presented at medical meetings with some degree of understanding.
My sister also thought that I learned to face my fears, which was true. You can’t imagine how terrified I was to learn that I had multiple myeloma. Now, eight years later, I am more comfortable with the situation.
I do have a very deep respect for the disease and the damage it can wreak on a person. As a result, my lifestyle has changed somewhat. I try to keep healthy by eating moderately and exercising.
I have always tried to follow a healthy diet, but, as an example, I have given up diet drinks because I read that they may have carcinogens in them. To say I was paranoid about everything right after my diagnosis would be an understatement. I am more relaxed now, but still cautious.
I had to change my mode of exercising after having compression fractures. Whereas I used to lift weights at the gym, I eased that back to really light weights (under 10 pounds). I don’t jog or ski anymore. I now enjoy walking, have tried snowshoeing, and am at home in a swimming pool. I have also added stretching exercises and beginner’s yoga to my repertoire after feeling very stiff and sore following the recent surgeries and radiation treatments for my breast cancer. I hope that these measures will help me in my lifelong battle with the disease.
I also found that multiple myeloma and the treatments for it have impacted my stamina. As I got busier with family matters over the past couple of years, I couldn’t keep up with some other activities.
In addition, having to deal with side effects of drugs and other treatments has made me wary of extending myself too far. I therefore am not likely to try to change careers at this stage in my life, since I am comfortable with working from home, as I usually do. I now also worry about travelling on my own, for example, since I’m not sure I could handle any potential complications (health-related or otherwise) by myself any more.
I also had to drop away from some activities after my diagnosis, when I stopped participating in my choir for a year and didn’t even show up at the gym for months. Gradually over time, however, I have been able to get back to the interests I do for fun and for fitness.
Since my diagnosis, I also have gotten quite involved with the myeloma community. I have met many wonderful, brave people, and have worked on interesting projects. I consider the patients and caregivers in my local area, as well as the Beacon community, to be part of my support, and try to pay back for the help I have received. Sometimes I find it to be too intense, especially when we lose someone to the disease. So I strive to keep a balance in life, between family, interests, and my myeloma-related volunteering.
Physically, I am older, grayer, and an inch shorter than I was eight years ago. I stopped dyeing my hair after my diagnosis, since I wondered if the hair dye was carcinogenic. My daughters actually like my natural color the best.
The injuries that led to my myeloma diagnosis caused me to lose a bit of height, so naturally I had to go out and get a whole new style of wardrobe to suit me now.
And, to be honest, I am glad to be older and hope I have gained some maturity because of my experiences. My youngest sister says that I have a keener appreciation for the good things in my life, such as my family, the beautiful environment, reading, writing, sewing, singing, and travelling with my husband. Each day holds something positive for me since I am so glad to have survived my health issues so far. Perhaps selfishly, I make sure that I do something I enjoy every day, be it reading, working on a hobby, or babysitting my wonderful grandchildren.
When I asked some friends about how I had changed since my diagnosis, they said that I am more patient now. One dear friend, a retired nurse, thinks I am a Pollyanna. Maybe I had that tendency before the myeloma diagnosis, but it was untested since I was not sick or injured except for a few months before that.
Another friend says that basically I am the same friend that I was before I got multiple myeloma, which I very much appreciated hearing.
How has your diagnosis affected you?
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The quotation for this month is from Yo-Yo Ma (1955 - ), a Chinese American cellist, who said: "As you begin to realize that every different type of music, everybody's individual music, has its own rhythm, life, language, and heritage, you realize how life changes, and you learn how to be more open and adaptive to what is around us."
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 .
Wonderful column Nancy. It is great to see that while a lot has changed in your life since you diagnosis, you really are the same person you were back in 2009. It appears that you have not let multiple myeloma define you, but rather just shape some elements in your life. I think we all have made similar adjustments. We retired to a mountain community four years ago and hoped we would make skiing a weekly activity. As you can imagine, we have had to drop that desire since my husband broke a rib right before his diagnosis. Like you, though, we enjoy walking every day and traveling when he is well. Thank you for sharing your experiences and we look forward to your next column.
Thanks, PattyB, for the comment! Gradually we can adjust to our new realities, if need be. Sorry that you had to give up the dream of skiing every week, but as you say, walking and travelling are nice things to do! Hope you enjoy the rest of the winter. If where you live is similar to where we are, there is quite a snowpack in the mountains.
Thank you for generously sharing your experiences in this thought provoking column, Nancy. I must admit that myeloma has led to some very major changes in my life. Prior to my myeloma diagnosis in late 2015, I was very, very self reliant. Divorced in 2012 with youngish children, I was proud of managing everything myself which included all aspects of childcare, cooking, cleaning, shopping, dog-walking, home repairs and home maintenance, gardening, and working a full-time job. Once myeloma hit and I underwent surgery to repair my femur/hip, I had to adapt to my new physical limitations and was forced to accept help from family and friends. It was extremely hard to let go, but I’ve finally learned to slow down, be less of a perfectionist, less in control and seek out and accept help when needed. It’s also been formative for my twin boys (now 12 1/2) as well, as they have learned to take initiative and be more responsible; taking on chores that I would still be doing myself if I didn’t have myeloma. My modes of exercise have changed too. I used to be very fit and strong; lifting heavy weights and strenuously rowing, and cycling at the gym. I can’t do this anymore, nor can I attempt activities like skiing, zip-lining or tubing anymore. Exercise for me now consists of walking my dog, gentle swimming, and yoga/pilates. I’ve gained some weight, but this gentler form of exercise makes me happy and instead of focusing on how I look, I am now more focused on how I feel and I think I am now in better tune with the needs of my body. Although I am in CR and not on maintenance, I still experience fatigue and pain. Using medical cannabis before bed (something I never thought I’d do) helps me get through difficult nights. I’ve also become very cautious about travelling. I worry that if I plan a vacation too far in advance, I may not be fit enough to do it when the time comes. Case in point, I’d like to visit Sable Island (for hiking and to see the wonderful wild horses) this July, but I am hesitant to plan it this far in advance. It’s not an easy journey we are on, but if we look, there are always positives to be found, and for me, the main positive is that I’ve learned to slow down, smell the roses, and be gentler with myself and with those around me.
Wow 60 columns, that is amazing! Coping with multiple myeloma is a journey. I can't help but think of the Forest Gump line "Life is like a box of chocolates, you never know what you are going to get." Well multiple myeloma is very much the same, none of us know what we are going to face until we have to face it.
Dear Nancy,
What a great person are you. You are a inspiration for other patients. Your optimism lo live with the disease makes you physically and mentally strong. What Ron Harvot was saying: Life is like a box of chocolates, we never sure what we are going to get. We all live in hope to fight with the disease. All is well goes well. God bless all of you. May He give us strength to fight with myeloma.
Thanks for the nice comments!
Karen - Thanks for describing your busy life as a Mom, working at a full time job, being a multiple myeloma patient, and being an exerciser and looking after your household too. It sounds like you are really well organized to do all of this. I hope that everything works out well with the remission that you are in right now, and that it continues for a long time. I took trazadone, a prescription drug, to help me sleep when I was taking dex. As far as the traveling goes, I still book trips months in advance, but like to have something that I could cancel closer to the time if I needed to. I haven't had to cancel very many trips though. Recently I canceled going to a needlework seminar in Newfoundland this May that I had signed up for last November. I regretted doing that, but my schedule is actually very full right now and I wasn't sure about flying across the country by myself. I think I could have done that, but wasn't sure it would be enjoyable. So I signed up for a weekend workshop in Red Deer, Alberta, instead, in June, and hope to get to that.
Ron - That is a cute saying, and 'Forrest Gump' was a really poignant movie too. I remember Forrest sitting at a bus stop talking to an elderly lady about all of his problems too.
Kailashnath - You are too kind! I am sure that we all want to help others, even if we are sick ourselves. Who would know better than we do about the problems we have had as multiple yeloma patients and caregivers! I think that we can draw strength from meditation and prayer and discussing this with others too.
Dear Nancy,
I appreciate another thought provoking article. And you ended with a hard question. How have I changed? I like how you asked your friends and sister to give their input too. I will have to do that. Sometimes I focus too much on the physical changes, and your column reminded me to look at the emotional and spiritual changes. I tend to lament on my loss of strength and slowness and forget that I am also aging, 72 now. You reminded me that I discovered again how I love to write, and even to write poetry. I have one more aggressive cycle of 2 weeks and than I get a break. Than I will take the time to evaluate the gifts and costs of the myeloma battle.
Thank you for writing about hard topics.
Thanks, Maureen, for your kindness! That is so nice that you love to write, and now is the time to do that in our lives. Good to know you get a break from aggressive treatments in two weeks. Enjoy your time off of those!