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Myeloma Dispatches: Lessons Learned
By: Maureen Nuckols; Published: February 8, 2016 @ 1:55 pm | Comments Disabled
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:
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 [1].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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