Myeloma Dispatches: Season Of Change
“If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changing.”
With these lyrics to his well-known song, “The Times They Are A-Changin,” Bob Dylan spoke about the unrest of the 1960’s. The tune, first released in 1964, is still a useful way to talk about my life today.
You see, no matter how hard I try, life keeps changing.
Change is just part of life. We do not have control of much of the change in our life, yet we can “swim or sink.” Sometimes I fool myself and believe that I can stay right where I am, especially when I am in remission from multiple myeloma.
In Colorado, the emerald green of spring has changed to summer green with tall grasses and rich wildflowers. Snow-capped peaks are the only remnants of winter. Temperatures rise to the uncomfortable 90’s; the season changes.
I have learned to get up early, even as early as 5 a.m., to train with the triathlon team I am on. By 10 a.m., the heat is too uncomfortable to bike or run. The swim training has changed too. We had been swimming in the pool for seven weeks, practicing technique, endurance, and speed. This week, the team switched to open water swimming at a local reservoir. The water was choppy and cold, the skies overcast, and once again we learned how different open water swimming is from swimming in a pool.
I have been doing this routine for over 20 years, and yet the first swim is always challenging. We have rescuers on the shore, lifeguards in boats, which create a circle of safety for the swimmers. I feel nervous. Each year, I learn to adapt to the change.
Adapting to the changes in multiple myeloma is a given. I am receiving a Darzalex (daratumumab) infusion monthly. I don’t take Velcade (bortezomib) or dexamethasone (Decadron), but intravenous methylprednisolone instead. Last month, I experienced a reactive airway disease after the infusion, with coughing spasms and hay fever symptoms. I needed two days to recover before I could exercise vigorously again.
After consultation with the cancer center pharmacist, I was prescribed Singulair (montelukast) for four days before and three days after the infusion. Also, I would need to continue with the intravenous Benadryl (diphenhydramine), an antihistamine. I really couldn’t argue with the logic, although I really don’t like how I respond to Benadryl. I become so sedated that I cannot go to the bathroom unescorted. I am zonked for hours, sleeping off and on. So for my next infusion, I asked for a room and planned on sleeping all day. The new plan worked well, and I didn’t experience any coughing spasms, and after two days I could exercise again. I adapted.
Change may also involve loss. Last month, a friend of mine lost his life to a rare form of salivary gland cancer, which he had battled for 20 years. He experienced several periods of remission, sometime for years. He was a powerful model of adapting to change and learning “to swim rather than sink.” His two children, grown now, talked at his life celebration about how he used those “in between times.” He traveled the world with his family. They called themselves the “four pack.” What an ideal model.
I left the celebration and wrote both of my grown sons that we should plan another family trip this year. Change. We may not be able to orchestrate the change, but we can learn to confront all of it head on.
In response, my 40-year old asked me for a hike. I changed my schedule so we could both hike together. He was a perfect guide, walking slowly for my pace. The trail was next to a roaring creek, shaded by large leafy trees and a rich variety of wildflowers. We both made time for each other.
Then another unexpected (and lovely) change greeted me. Our younger son proposed to his girlfriend. We love her and are celebrating their obvious happiness. Next week we travel to Cancun to spend a week with my son and his brand new fiancé and to enjoy a week with our future in-laws. An amazing opportunity.
Change may also involve letting go. I am re-evaluating my participation in the wonderful Roaring Fork Triathlon women’s team. I have been both a coach and participant for 18 years. This team and the enduring friendships have been a constant through the ups and downs of my multiple myeloma journey.
However, it is time for change, due to aging, injuries, and our old foe, cancer. I am considering changing to long-distance swims. I want to travel more, and a 14-week training commitment would tie me down too much. At this stage, I am evaluating what I want to do. Some of my favorite training buddies are doing the same evaluation. It’s bittersweet. I am pushed to do my best and enjoy this remission. I am trying not to make any big decisions right now.
Just like you, I have a birthday every year, and the upcoming one troubles me. I am now, as the saying goes, “too old to die young.” The inevitability of aging is in my face. I was 50 when my Mom turned 73, and I remember her moaning about the changes in her face and body. I probably wasn’t very sympathetic. As another cancer survivor reminds me, “Celebrating another birthday is a privilege that is not given to many.
I am grateful for where I am right now. I want to hold the moments tight, and yet I know I do not have that power.
Seasons change, children grow up, and good friends die. I can take each day as it comes, grab life experiences, and swim as fast as I can.
“The times they are a-changing.“
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Maureen, I love reading your wisdom. Thanks for sharing. I send love to you and yours. Rebecca
Lovely, Maureen. You write what's in my heart right now. I am enjoying remission and not being on any myeloma treatment, but I know things will change again. I've joined a gym and am diligently working on weights. And just trying to get stronger. I walk everyday but needed the strength training. Life changes and so must we. Best to you in your upcoming decisions.
Thanks for the column, Maureen, and congratulation to your family on your younger son's engagement! I hope you have a nice holiday in Cancun together. Your athletic abilities are just amazing, and I am sure that if you switch over to long distance swimming you will be good at that too! Your Dylan quote expresses that thought well - isn't it nice that he won the Nobel Prize for literature this year!
Maureen,
What beautiful thoughts, and you are blessed to be able to express them so beautifully!
I am 57 and was diagnosed with multiple myeloma a month ago. This article has given me hope. I have turned in the last few months from someone who exercised regularly to being too tired to walk around the block most days. I have only just started treatment (VTD) two weeks ago so maybe my body will adjust to it in time. I am also wearing a back brace 24/7 for approximately 8 weeks to protect my spine. You have demonstrated that I can get back to a level of fitness. Yes the times are a-changing for me and my family but we will embrace change and look to a positive future.
Dear Maureen, as always, I could really identify with some of your wise words. Taking advantage of remission is something that I think about a lot. I think that it adds a lot of pressure to many things that we might do and it is often hard for other people to understand. Keep swimming and I will join you from the other side of the pond!
Dear readers, my comments have been delayed since I just returned from Cancun which was wondrous mostly because of being with my son, the new fiancee plus we love our future in-laws.
Dear Rebecca, I do receive your love and your words help me to keep writing
Dear Christina, So glad you are also in remission. Strength training is always my weakest area. Yet it is crucial as we age so good for you.
Dear Nancy, I am so glad that Bob Dylan won the Nobel Prize,and this is one of his simpler songs/lyrics. Yet how this resonated with me this month. I hope you are thriving this summer, now that you are done with your treatment.
Dear Barbara, thanks for your words, your encouragement keeps me writing.
Dear Debbie, you are just in the beginning of your journey. I remember those days of fear, fatigue, and just the unknown. Hang in there, 8 weeks will pass and you will have breaks from treatment. Naps are great during this time.
Dear Marjorie, you captured the double edge sword of remission. I am always focused on "seize the day" sometimes I go over the top with what I want to accomplish. Thanks for recognizing that dilemma.
Hi Maureen, as a long-time Bob Dylan fan by proxy, I enjoyed your reference, but as a better than average swimmer most of my life, I have another analogy: I am hanging onto the kelp at the age of a shelf in a dangerous part of the Cape Point Nature Reserve (southern tip of Cape Peninsula) Cape Town. I used to swim there and bag my legal four rock lobster, at least two of which would be prepared for my wife. I would hang onto the kelp and count sets of waves and after the seventh - given the time of tide - I could take a deep breath and pull myself under to swim along the ledge and take a lobster or two in the passing - there were literally hundreds, all sizes, with the bigger ones clever enough to push the crayfish children to the front. There was just enough time, if I had planned it right and the conditions were optimal, to ensure that I took home lobsters way I excess of legal size. The nature conservation staff who checked our catch-bags often called each other to "come and have a look". I am quite unexpectedly at the beginning of the second stage of my multiple myeloma journey. Looks like I am going to have to start swimming or sink like a stone. But then again I turn 71 soon and I accept that it is now safer for me to wade in the pool and have fun with my grandchildren!
Kind thought to you and yours
Ossie Gibson (a Cape Town Beacon fan)
Maureen, thank you for this touching column. Change is tough for me too. Change can bring the bliss of realized hopes and dreams or the fulfillment of our worst fears, and sadly, we have little control over it. Thankfully, as you say, we have each other to help us "confront the change head on" with the support of this community and our loved ones. My condolences to you in the loss of your friend, and my well wishes that you have all the best changes to come!