Myeloma Dispatches: Lessons Learned
February is an auspicious month for me. On February 9, 2016, I will celebrate five years of life after my autologous stem cell transplant.
When I was diagnosed with multiple myeloma, I was scared. In fact, my oncologist recently told me that he thought I would live for four years after my diagnosis. My type of multiple myeloma is considered high risk because of the chromosomal abnormalities my myeloma cells have (del(17p) and t(4;14)). Only five months after my initial diagnosis, I received a stem cell transplant.
Five years later, I am very alive. Today I worked with 20 active middle schoolers on craft activities. Yesterday I cross-country skied with friends. Then I wrote a new poem.
I am very much alive.
I plan on marking this anniversary with a few close friends, doing something special outside. I live in the mountains of Colorado, so the hillsides are snow covered, the air is chilly, but the sun is almost always shining. So on that day, we will have a diverse menu of adventures from which to choose.
The timing is right to not only celebrate life, but to reflect on what lessons I have learned over the last five years. So instead of resolutions, I am reviewing what I know works for me to enjoy life with cancer.
None of my lessons are profound or unique. My friends remind me that I’ve been living many of these lessons for years. I hope the lessons will not only be familiar, but also helpful, for my friends in the myeloma community.
Go outside every day. No matter how sad or discouraged I feel, if I walk outside even for a few minutes, my mood changes for the better. I feel the air on my face, and soon pay attention to the beauty of my surroundings. During a cold, dark winter, the outside time becomes essential. I walk the dog, snowshoe, cross-country ski. Whatever, I go outside.
Practice kindness. I have learned that when I am feeling my worst, what works the best to make me feel better is to reach out to someone with kindness. The act could be small, such as a phone call to a friend who is struggling, making sure I am listening more than talking. Now I write more cards, using the old fashioned mail to express gratitude or encouragement. Doing any of these acts of kindness causes my attitude to improve.
Set small physical goals, with a focus on the process rather than the outcome. A physical goal allows me to focus on something else besides my myeloma. I have always been very active and goal oriented. Goals help me to focus in a positive way. I enjoy training for athletic events, yet I am kinder to myself than before. For example, I am going on a ski hut trip this month, so I am trying to ski twice a week in preparation for the trip. However, I am accepting help carrying my pack during the trip; that help will make sure I get to the hut. I am also learning to lower my expectations about my athletic performance in an attempt to mute my strong competitive edge.
Practice gratitude. For years, even before my myeloma diagnosis, I have been writing down a minimum of five things I’m thankful for each day, for example:
- My husband of 30 years
- My two awesome sons
- My old dog and faithful companion, Eddy
- My strong circle of friends
- The lovely town I live in
On a tough day when I am feeling ill or hopeless, I return to my journal to review the gratitude list to see if that list is still true.
Write each day. Sometimes this may be only a brief journal entry. What is new for me since my myeloma is writing poetry. I discovered while receiving infusions, waiting for appointments, and waiting in hospital lobbies, that rhythmic phrases about my experiences began to appear in my head, which I then express in my writing. Then someone gave me Blue Horses by Mary Oliver. As I read her poems, I was struck with how she spoke to me in a meaningful way.
So I don’t care to
be too definite about anything.
I have a lot of edges called Perhaps
and almost nothing you can call
Certainty
- Mary Oliver, Blue Horses: Poems
This gift of poetry, both writing and reading, may be the best surprise of the last five years for me. When I write, I am engaged in a new craft, and time disappears in a wonderful manner. My love of learning is now transferred to writers’ seminars and poetry workshops. Poetry became my ticket out of the world of illness.
Recently I was fortunate to hear U.S. Poet Laureate Juan Felipe Herrera speak and read poetry. The summary of his advice was simple. Find the poems that make you feel delight, connection, or meaning. And write, let go of your censors, just write.
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Of course you will have your own lessons from your own myeloma experience.
Another tool that I added to my toolbox, which is particularly useful on hard days, is to read a column by a fellow Myeloma Beacon contributor. I always feel a connection, a sense of belonging to a special community. Although the price of membership to this club is high, there are benefits that make the membership worthwhile.
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 .
Wonderful column! Thanks so much for sharing!!
"Go outside ... walk the dog" - Great advice!
I love how you don't let what is to come take away your joy from the good moments.
Maureen,
I also have the del(17p) abnormality. I am always looking for encouraging stories about dealing with this high-risk abnormality and watching what is happening in the clinical trials, especially if the del(17p) risk is mentioned in the research or the results. Congratulations on arriving at your FIVE year anniversary from your transplant. I will be celebrating my ONE year auto stem cell transplant anniversary in February.
I always enjoy your column and especially this time, as it's winter in Minnesota (where I live) and the short, dark days can be depressing, and the cold air and slippery sidewalks sometimes makes it difficult to walk for exercise outside. But I took encouragement from your column about getting outside every day. I try to do that as well – even if it's just to shovel a little bit of snow off the front walk. The fresh air does me good.
Enjoy your 5 year anniversary! Thank you for a very timely column.
Maureen,
Congratulations at your up and coming 5 year anniversary! You must feel wonderful.
Thank you for the poetry. Perhaps I'll begin reading by reading Mary Oliver's.
With blessings a good wishes,
Becky
Thank you for sharing your lessons!
Congratulations on your upcoming anniversary, and thank you for such a beautiful article. I will take your lessons to heart as I am just getting started on my journey with (so far) smoldering myeloma.
Yes, poetry. So very glad you go outdoors and also consider poetry a big part of your life which has surprised you still after 5 years and transplant. I keep a little book of "surprises" – small unexpected happenings that come my way daily. Gratitude indeed. Suzanne Gay
Thanks for the lovely column and sharing your outlook on life, Maureen. Hope you have many more years of living in this special way!
Love this!
Congratulations on your anniversary of five years today. May 1st is my fourth year anniversary post transplant. Your column was very encouraging and I too get strength for the journey we are all on from reading the columns. Enjoy your day ...
Hi Maureen,
Thanks for an excellent column. You've shared lots of great lessons. I need to get back to writing something every day. Something more than emails!
Best wishes to you on your stem cell birthday!
Mike
Wow, what an excellent writer. I loved your story, and both my husband and myself got even more inspiration.
"Although the price of membership to this club is high, there are benefits that make the membership worthwhile."
Great quote!
My best, Kim
Hello all,
Thanks for all the comments. Yesterday was one of those myeloma surprise days. Instead of celebrating my 5-year birthday, I spent the day in procedures, having a port re-inserted. More details later.
I was discouraged, even angry, yet your comments kept me going all day. Thank you for that.
Tami, Lattecat, and Cheryl - Your encouragement was heard even through my sedation. Going outside today.
Mike - Start writing today, and don't email it. Just write.
Nancy and April - I wait each month to read your columns, so your words mean a lot to me.
Susanne - I like the idea of keeping track of unexpected happenings each day.
All the rest of you - JC, Kim, Diana and Cathy Ann - your words carried me through a difficult day.
The sun is shining in Colorado, I am alive, a bit bruised and battered, but definitely in better spirits than yesterday.
Thank you all,
Maureen
That was really lovely Maureen. Thank you. I am a mental health nurse, as well as having myeloma, and consider your advice both wise and clinically correct.
Love hearing that a fellow 17p-er has celebrated 5 years!! It gives all of us great hope in spite of articles that give the 2-3 year prognosis (I hate those articles). Thank you for sharing your living lessons for daily living. Each day is a blessing from God and it's good to remember to live it to the fullest.
Jeff, I am also a mental health specialist. When I was teaching nursing, my favorite course was mental health nursing, especially clinical time.
Amazing, sometimes, that experience is helpful and sometime not. What kind of multiple myeloma do you have?
Maureen
Jan, Remember that myeloma experts don't really know our expiration date. With all the new drugs, time is unpredictable. Prognosis is really fluid at this time.
Thank you for reminding me to live each day fully. Hang in there and don't pay too much attention to "prognosis."
Maureen
Hello Patty B, Thanks for the kind words. Sometimes I have to re-read my column to take my own advice. Today I have the fatigue with Revlimid, so your comments were well timed.
Maureen
Hi Maureen
Wonderful and inspiring article. We like the idea of small daily goals, especially going outside, no matter what. We share many similarities in our lives, so keep up the great advice.
Maureen,
My prayers and thoughts are with you as you travel through this new treatment. You have what it takes to make it happen and we are all with you sending Love and Healing thoughts. I am also considered high risk because of the del(17p). Was diagnosed in 2013 the fall after my 70th birthday. I fortunately have been able to stay on treatment without side effects. (I don't want to say that out loud, so shhh ...) I celebrated 2 years in remission on January 9th, of course while on Revlimid 20, 2 weeks on 2 weeks off, and Velcade every 2 weeks.
It is scary to not know what the chemicals are doing to my body besides keeping the myeloma at bay. I have challenged myself to walking and carrying on as normal life as I can while in treatment. In May my husband and I are going to the Grand Canyon to hike. I hope the trip will help keep my physical and mental being the best that I can.
Thank you for sharing as I will also gather my paper and pencil and release some of those words and feelings that linger in my heart and my head. You are an inspiration to all of us. Thank you Maureen and God Bless.
Good advice on everything, especially walking. I'm coming up on 1000 days of walking in my "Just Keep Walking Project," where I have walked every day, no matter what the weather (today raining). It's not a long walk, sometimes only 1.5 miles is all I can do, but it's still walking.
February 29 marks my 10-year new life, as I entered the hospital for my stem cell transplant. I gained 4 wonderful years. No drugs except Aredia. Revlimid did wonders for almost 5 years, Pomalyst nothing. But I'm on Velcade now with astonishing results.
I agree about how connected we are here, all in our different journeys. I am still reeling from Pat dying. Time will help.
Best to you in your new treatments.
Hey Maureen. I don't know what type of multiple myeloma I have. That sort of info hasn't been forthcoming from my specialists. I don't choose to bury my head in the sand, but I don't chase down all things multiple myeloma either. It's too depressing. I research enough to know if I can stay alive for a few more years antibodies, and CAR T cells hold out great hope, but in the mea time I just get on with life as best as I can. I only check the Beacon every couple of weeks, hence the delay in my reply.
I still work and find helping others extremely therapeutic. Your recommendation about "Practicing Kindness" touched a cord. I also liked writing 5 things down your grateful for, I call that "Count your Blessings" therapy and it also works well.
Whilst I'm writing, I'll share another one with you, the 23rd Psalm. You see, I had panic attacks early in my multiple myeloma journey and found progressive muscle relaxation, controlled breathing, and even relaxing imagery utterly useless. Then I stumbled onto Psalm 23. In my mind I was reminded of a loving / caring shepherd, walked beside a beautiful billabong of still waters and lay down in soft lush grass. Soon even though I was IN a valley of death, I felt confident and finally was reminded that in the end "I will live in the house of the Lord FOREVER". Then I was completely calm. I still have my fears, but no more panic attacks.
My love to you Maureen. Good luck on your journey.
Donna, thanks for sharing your story with me. Especially your age and your deletion P. I am excited about your remission. Don't be afraid to say it out loud. I love that you are going to the Grand Canyon. That's still on my list and the hope "to release the words and feeling that linger in my heart and head".
Sorry for the delay in writing but I'm in the midst of treatment again.
Enjoy the day Maureen.
Wow, Christina. 1000 days of walking. That is inspiring, and I don't believe 1 .5 miles is too short. That is my goal on many days.
So glad you will be celebrating on February 29 a 4 year birthday after stem cell transplant. Do something fun. I'm glad the regimen is working well. I loved hearing your story.
Maureen
Jeff, thanks for your response. I am glad that you have a strong spiritual belief/practice to support your journey. The visualization with that particular Psalm you expressed beautifully. I use visualization particularly at night when I'm having trouble sleeping.
When you are ready, you may want to know what type of myeloma you have. Each of us are so unique. When you are ready.
I am glad you are still able to work. I do miss my job.
Take care, each of our journeys are so unique and yet we can connect to others through the Myeloma Beacon.
Maureen
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