Northern Lights: A Second Myeloma Spring
We had a really long, cold winter with lots of snow and ice this year. Our Chinook winds, which bring warm air from over the mountains to the west, did not blow very often. When finally at the end of April our streets were clear of snow and a few spring bulbs came up in the garden, I was glad to get back to spending more time outdoors.
When I walk outdoors, I often listen to Ian Tyson’s song ‘Springtime in Alberta,’ a moody song with the lines, "Just like spring time in Alberta; Warm sunny days, endless skies of blue; Then without a warning; Another winter storm comes raging through."
That is more like my experience of spring every year, actually. I realized during one of my recent walks that I can also relate to the lines of the song figuratively in terms of my multiple myeloma diagnosis.
I’m currently experiencing sunny days because I’m off treatment. However, I catch myself wondering what I will do if another storm comes raging through in the form of another relapse? I know that this is a possibility, and even quite likely. So just as I put on my protective coverings, boots, mitts, hat, and jacket to shelter myself from the wind and the cold on my walks, I try to prepare myself mentally in case I relapse and need more treatment.
To me, this ‘myeloma spring’ of being off of treatment for the second time in almost nine years has been a treat. My first break occurred from 2011 to 2014, before a relapse caused me to go back onto treatments. The second break occurred in 2016 when I experienced a second cancer, breast cancer, and went off of myeloma treatment for what I thought would be just a few months. That break has extended to a year and a half now. I try with my lifestyle of getting enough rest, exercising, and eating good food to stay healthy, but I know that this cancer can creep back up on me despite my best efforts at staying well.
My monthly blood tests are quite good, but that pesky ‘M’ protein is still evident, and seems to be increasing gradually. I am not ready for more treatment, though, and have really appreciated this ‘second spring.’
The additional energy I have had while being off treatment, and how much more I can accomplish, have been blessings.
During this second spring that I’m experiencing, my husband and I have been reorganizing, having some rooms painted in our house, and doing a ‘spring cleaning’ of epic proportions! We donated a lot of clothes, books, and craft supplies to the local thrift shop and to charity sales, leaving us more space in the house. We want to be heading into the next phase of our lives with as little clutter as possible. He is planning to work less so that we will have more time to spend together and with our family.
I hope and pray that my health holds up for a while longer while I am off treatment. However, I am greatly heartened to know that there are more treatments available for multiple myeloma than there were when I was diagnosed in July of 2009. At that time, Velcade (bortezomib), thalidomide, dexamethasone (Decadron), prednisone, and high-dose melphalan given during the stem cell transplant process were the primary treatment options. A year after that, Revlimid (lenalidomide) was approved here in Canada for relapse, and it now is approved for maintenance therapy also. Then Pomalyst (pomalidomide) came along, and soon we should be getting funding in Alberta for Kyprolis (carfilzomib), and perhaps even Darzalex (daratumumab) in the not-too-distant future.
So I couldn’t be needing treatment at a better time, if that should be the case. There have been significant advances made in the last decade.
Still, I am cautious and recognize that I am not able to do everything that I used to do. I am pacing myself, not only on my outdoor walks, but also in my scheduling of travel and in the outside responsibilities I take on. My main focus is to enjoy the family and extend my second spring as long as possible.
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The quotation for this month is from Henry Williamson (1895 - 1977), an English army officer, naturalist, farmer, and ruralist writer , who said: "Music comes from an icicle as it melts, to live again as spring water."
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 .
Nancy,
I was diagnosed in 2009 at the age of 59, and after initial treatment and an autologous stem cell transplant, I was free of treatment drugs for almost 4 years. In 2012, the "numbers" started creeping up, and my oncology team started me on oral medications. With the addition of Ninlaro 3 years ago, I remain on three: Ninlaro and Revlimid 3 weeks a month and 20 mg of Dex weekly. Side effects have been manageable. I still bike, swim almost daily, kayak, and have started playing pickleball. I walk at least an hour a day outdoors; our little dog demands the exercise!
We bought a used small RV after my diagnosis, and have traveled south to get out of New England winters. Summers we've explored the Maritime Provinces and Quebec, and are planning a longer, westward trip for 2019.
Don't let the possibility of going back on treatment interfere with your current enjoyment of life. I'm betting on newer, more effective drugs with fewer side effects to come along every year or so. You and I can be around for many, many more "Springs!"
Nancy, I enjoyed reading your reflections. One of the things about myeloma, even while we are not in treatment, is that it is always lurking in the back of our minds because we know what this illness is like. I certainly hope you will be around for many more springs. Your description also reminds me of my own situation - stem cell transplant back in 2015 and now three years off of treatment, although that M-spike is slowly creeping up. At some point, if it keep this pattern, I know I'll be back in treatment. It is sounding like this pattern is more common these days which is a great thing.
So we need to enjoy each day - it is truly a blessing.
Thanks, Bev and Anton, for the nice comments!
Bev, it is great that you are keeping so very active! I walk a lot too, and I think that is very helpful for staying healthy. It's nice that you can travel around a lot, and stay on oral medications.
Anton, your situation is similar to many folks. Being in a remission and away from treatment for awhile if possible is a blessing. That is not to say that I don't agree with the idea of 'maintenance therapy' though. I have been on treatments for myeloma for about half the time of the last nine years! I agree that every day is a blessing.
The concept of 'many springs' brings to mind a beautiful spot in the Rockies. There is a pond called
'Many Springs' that is fed by geothermal warm springs, and many wildflowers bloom there, birds and frogs abound, as well as mountain animals. It is one of the first places we go to walk in the mountains every spring.
Dear Nancy, I enjoyed reading your column, it painted a nice picture of you enjoying, and making use of, springtime . I hope you can avoid treatment for an extended time but I admire the way in which you are facing up to the inevitability of relapse. I’m also embracing the northern hemisphere spring, I love planting flowers and shrubs but, in my quieter moments, I can’t help wondering if I will have relapsed before they establish. Remaining hopeful, but realistic, is the way forward!
Thanks, Marjorie, for your nice comment. I am sure that your garden must be a real pleasure to enjoy. I hope that you don't relapse anytime soon!
Nancy, thanks for the reference to "Springtime in Alberta". I've been an Ian Tyson fan since the Ian and Sylvia days but had never heard that song. I found an online version with wonderful graphics and agree that it is a great allegory for the ups and downs we experience with myeloma. I hope the days ahead are sunny for you and the storms are only minor squalls.
Good to know that you are a fan of Ian Tyson, Holt. I also have followed Tyson off and on since the Ian and Sylvia days. One of their top hits, which is one of the top favourite folk songs in Canada, from 1968, is 'Four Strong Winds,' which also featured the cold Alberta landscape. We sang it in choral harmony for one of our choir concerts. Tyson has a ranch in Longview, AB, and I think from looking at the online version that the landscape photos were from around there; itlooks like the Highwood River area.
I think that what struck me about the song is not only how the weather varies, but how the spring 'chills me to the bone.' Wow, what an analogy for someone with bone marrow cancer. But really I just enjoy the music and it helps me to get in a lot of walks too.
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