Northern Lights: Surprising Changes In My Life
After my last column, in which I described how I recently felt strong enough to try practicing yoga, I realized that there have been many changes in my life since my myeloma diagnosis four years ago.
Although no one would want to be handed a diagnosis of any kind of cancer, including multiple myeloma, I managed to scrape through the tough times. Now I have emerged onto a clear plateau of being in a remission, and I no longer need to take any chemotherapy drugs.
Now that I can look out and around, forward and backwards in time, I realize that my ‘new normal’ is quite good actually.
With luck on our side, we do continue to get older. The years roll by, and whatever has been happening in our lives gradually shifts and changes to accommodate us as we age.
But with a myeloma diagnosis and the accompanying injuries, a whole lot of ‘aging’ can happen in a really short period of time. Someone who posted recently on The Beacon mentioned that she was afraid that she would not outlive her cat.
There is nothing so stark and compelling as a diagnosis of a life-threatening condition, and it can stop us short in our tracks. We have ‘hit the wall’ and have immediately to start dealing with a condition that, left unchecked, will overwhelm our health, making normal aging impossible to achieve.
My myeloma diagnosis four years ago left me changed in some subtle and not so subtle ways.
I am obviously not as physically strong as I once was. I can no longer lift heavy items, march in parades with the pipe band, or even go jogging, without incurring so much pain that I need to take pain meds. If I fall, it hurts a lot, too. So I try to avoid situations that cause me pain.
The anxiety and fear that welled up in me at the time of the diagnosis was almost overwhelming. The exhaustion, sickness, and pain at that time and during treatment were truly depressing. The whole experience made me worry about the results of every blood test, bone marrow biopsy, or skeletal X-ray survey. But now, four years from the start of the testing, I worry a lot less about the myeloma returning anytime soon. There is no sign of it in my blood tests, and if my numbers started to rise, I would probably have some time to think of treatment options. It might not be as much of an emergency situation as it was initially.
Certainly I can no longer keep pace with the younger person I once was. One would expect to slow down a bit with every decade of life. But the rough and tumble world of cancer and its treatments tends to cause a lot of disruption in one’s normal routines.
My energy levels now are not as good as they were four or five years ago. However, they are much better than they were when undergoing treatment.
Since my treatments ended, I have gotten back on my feet and can walk longish distances again. It is a real pleasure. I now meet regularly with three retired teacher friends. We walk 5 km and go for coffee each Friday morning. Additionally, last summer I started to do longer hikes in the mountains and hope to do more of those too. My husband Dilip and I even took up snowshoeing last winter. We realized that it is more stable to walk on snowshoes than to ski, in terms of avoiding falls. And I am trying out yoga too.
Luckily I can pace myself, slow down, and even take ‘cat naps’ if I need to do so.
Despite the changes that put some limitations on me, some positive changes have also occurred since my diagnosis.
Overall, I feel much healthier now than before my diagnosis. I have also noticed that I am not as prone to catching infections anymore. Since I was immuno-compromised for quite a while, I started to avoid situations where I might be around sick people. I would turn away from someone who was coughing or sneezing. As a result, I do not get sick as often as I did previously.
Beyond my physical health, other positive changes have also occurred in my daily life.
My creative side is flourishing more now than before my diagnosis. I think that the tough experiences of the cancer treatments made me want to seek out the beautiful in life.
As a result, I have become more involved with the needlework guild I joined in 2001. The guild recently awarded me a grant to attend a seminar in Winnipeg, Manitoba, in May. In return, I will teach a class in silk ribbon embroidery locally and write an article for our newsletter.
My life as a choir singer has also taken on fresh energies. Besides singing in the choir, I am now on the music selection committee for the choir. In addition, I started to take voice lessons last year, since I love to sing and it seemed a nice healthy initiative.
I have also taken up photography. We have a lot of wildlife in our area, even as close as our own backyard. Photographing a coyote and a bobcat in March in our backyard led me to posting a picture of the bobcat in our community newsletter. Now the parks group I have been in since 1992 is planning to do a project about the wildlife in our park, maybe a photo contest, or an online book.
The most interesting and relevant change in terms of myeloma is that I have taken on a new ‘cause:’ helping us myeloma patients to navigate through the rough waters of our experiences.
It started when I my attended a patient education conference in 2009, only two months after my diagnosis. The conference was organized by our local and national support groups. After meeting the charming and highly motivated people involved with it, I decided to join them.
Since then, I have had the opportunity to help to plan and volunteer at a number of events, including two patient conferences and our local, annual run/walk to raise funds for myeloma research.
I really have evolved from being a passive listener to being an active planner.
On a broader level, I started writing this column for The Myeloma Beacon early last year with the hopes that sharing my experiences would be helpful to other patients during their struggles with this disease. Writing this column has also been wonderful for my self confidence.
So, overall, life is good again. Even if I have lost some strength and tend to worry a bit sometimes, the wonders in my seventh decade are more than enough to compensate for that.
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The quotation for this month is from Reinhold Niebuhr (1892-1971), American theologian, ethicist and public intellectual, who wrote "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." (Also known as the Serenity Prayer)
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
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Thank you for sharing! I finshed my chemotherapy regimen in 8/11 after beginning it 1/11. Never needed a stem cell transplant but during the harvest had a very serious bacterial infection that put me into septic shock. Have been only on Relimid since as a maintenance therapy but it gives me hope to hear that some patients don't even need to do that at some point, especially when some medical professionals gave me 5-7 years.
I've had some of the same changes to my own life, I tell people I have my good days and my bad days. But overall all are good in many ways because I can still enjoy life as I know it. I've traveled more, recently got a new camera. Crossing off things on the bucket list. Every day now is a gift from God and I treasure them!
Hi Nancy, I really liked your column and your positive and cheerful disposition in the face of all myeloma can entail. For me, my world has grown smaller and sweeter, in a sense since, my diagnosis (2011) and I have striven to be the best husband and father I can be. I have seen much of the world and visited many exotic locales. I now really just appreciate catching sunfish with my two boys or planning my wife's Mother's Day barbecue (trust me, my ribs are good). Also, my bungee jumping days are long over!
Hi John, Thanks for telling us about your experiences with myeloma also. Glad to hear that you are doing alright now. I think that if you can get past the first year with myeloma, usually your prognosis would be much better than the averages given! It's nice to be able to enjoy life again and not to be too stressed out either...good luck with the photography and the travelling..one would complement the other!
Hi Terry...nice to hear from you. Your family is so lucky to have your undivided attention! Enjoy those sons while they are young...kids grow up so fast! (Mine are ages 28 and 30 now...where does the time go??). Sounds like a wonderful Mother's Day BBQ also.
Hi Nancy...I really enjoyed your column. I was dx in 2/2010 and had a SCT 11/2010. My M-spike never really went to 0. It was like .03. So for 15 months we just watched it. Then all of a sudden it spiked to 1.1. I am now on rev/cyto/pred. My numbers have gone down to .7 and holding. Since dx, as you said our emotions flert around all over the place. I posted once on the beacon that this dx has made me priviledged to make sure I enjoy each and everyday and not just wake up to get through another day. God gave us so many wonderful blessings such as sun rises, flowers, birds and so on. I have traveled to Hawaii which is something I always wanted to do. My grandchildren (10) are like watching a wonderful movie. Thank you for you possitive attitude and enjoy all of your new found explorations
Thanks for writing music Meme! I agree that we just appreciate all the beauty and wonder of life's blessings more if we have been through an experience like ours. I hope that you have a great 'Grandmothers Day' too! The children are lucky to have such a nice grandparent. Didn't you just love Hawaii...?
Yes Hawaii was beautiful. We went to Maui. The flowers were so colorful and rich. But I have so much richness every time I look at my babies and I try my best to make every event that they are a part of. I am enjoying life so much more now. I am not as sick with infections as I was but I guess the trade off is not as much energy. God and life are good!!!
Nancy, I am so encouraged when I read a column that sounds so upbeat. I hope that others read about your approach and feel encouraged. Tom and I are the facilitators for the Northwest Multiple Mylemona Fighters in the Seattle area. Many blessings to you and your family, Nancy. Mary Blakney
Thanks Mary for your comment! Best wishes to you and Tom with the support group in Seattle. I am sure that you are helping many people by taking on that role of facilitator.
Hi Nancy,
Another wonderful article, thank you. I have always loved a good challenge but I could cheerfully have done without my MM. The challenge in my life now is finding ways of doing things that I used to do (without injury) or finding new things to do. From your article it sounds like you are busy with the new & the old.
I would love to see your photos of your bobcat and coyote. I love taking photos as well and managed to capture a beautiful dragonfly, when you magnify the photo you can see the clouds reflected in its wings. I told my children that in this small insect you can see a reflection of the universe. It took me a while and numerous photos to get one good photo. Luckily it was a cool morning and the dragonfly stayed there as I kept on going back into the house. Eventually I had to go and get a tripod (my hands get the shakes - courtesy of MM treatment). On the weekend we had a koala in the backyard but as it was raining and windy I didn't take a photo. I have had a wallaby strip the leaves from all of my strawberry plants in my raised vegie beds. The only reason I knew was due to the little squarish poo it left behind!
All the best,
Libby
thanks Libby for sharing the beauties of your garden! I will try to determine how to send you the pics of the bobcat and the coyote. you have an artistic side..I think that many Australians do, based on the sheer number of publications about stitching and needlework that are published out of Adelaide!
enjoy yor beautiful countryside..I know that you are heading Into winter now so stay warm! good idea to use a tripod with your photography..for Insect photography I am sure it would be a big help.
I am very fortunate with lots of activities, both new and old. I am busy, but it's a nice kind of busy!
Moments ago I was put on Revlimid, I am 75 and only a week ago even though I was a candidate for stem cell, the stem cell oncologist said "he had a gut feeling that since my remission was so good" he felt that my "chances" were better not getting the stem cell transplant. The average time for the "return" is 3 years and he had every reason to believe that my situation could be closer to 10 years. I had prepared myself mentally for the "stem cell" and was disappointed briefly that I would not get the transplant. I was told that while there is a 100% chance the "myeloma" would return that "he" felt I had such a remarkable remission that I "could" be better off using Revlemid and upon future necessity repeat the chemotherapy that I have just finished. I am going to start the Revlimid on Tuesday 7/2/14 upon receipt. I am encouraged about this treatment. jack
Good luck with your treatments Jack, and thanks for posting!
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