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Letters From Cancerland: Labyrinth

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Published: Jun 2, 2020 5:31 pm

There is a small private liberal arts college here in the com­munity, not un­usual at all in Ohio as this state used to have the highest con­cen­tra­tion of four-year private colleges in the United States. Like many small private liberal arts colleges built in the nineteenth century, it has a scenic campus, a portion of which also serves as an arboretum. A few years ago, a family donated money to install a labyrinth on one of the expanses of lawn in an area that is open but secluded, set below the main paths, and surrounded by large, mature trees.

This labyrinth is not a maze of winding ways that dead-end in to hedges or walls. It is built flat on the ground and made of contrasting stone, with the path in a buff color and the border in a dark gray. It was in­tended and is indeed used as a walk of contemplation, with meandering spirals that take you into the center and back out again.

Several weeks ago, I began walking the labyrinth on a reg­u­lar basis. I walk it in the morn­ing, often right after breakfast. I have found that the 15 min­utes it takes helps me settle into my day.

The pur­pose of a labyrinth like this is to center oneself, re­gard­less of the world raging all around and, indeed, often within oneself. As I type these words, I have been work­ing remotely for over two and a half months. It has been equally long since I have been in a store or shared coffee with a friend. Conferences, in­clud­ing one at which I was to speak with a close colleague, have been canceled. As the spouse of an exec­u­tive director of a symphony, I have witnessed firsthand how to shut down a season and what de­ci­sions are ahead in opening a new one. From the world­wide pandemic to the protests in Minneapolis and across the United States to ac­cepting that I will not be traveling to the Pacific Northwest to be with my chil­dren and grand­chil­dren, the world is indeed raging all around and within me.

So I walk the labyrinth.

Is it coincidence that during this time of upheaval my lab results for my mul­ti­ple myeloma, after months of straight lines, decided to jump around? Surely it was, but the re­sult­ing jolt of a possible relapse was just one more stick to throw on the fire.

(The sub­se­quent labs, taken four weeks later, bobbled back down enough that my myeloma specialist said to con­tinue the same treat­ment I have been on since July 2017: in­fusions, now every four weeks, of Darzalex [dara­tu­mu­mab]. To him, the risk of changing treat­ment in the midst of the COVID-19 crisis was some­thing to take on only if I was clearly relapsing.)

It is not coincidence that I began walking the labyrinth be­tween the first and sec­ond sets of labs and after the teleconference with my specialist. And even though the im­medi­ate crisis of relapse receded, I have come to de­pend on the solitary walk.

When I first began walking the labyrinth, I had to look down the entire time. If I looked too far ahead, I would get caught up in wondering where the path went and often step off the path or miss a turn. That was the contemplative lesson for me as a beginner: a labyrinth is about now, it is about the im­medi­ate moment, it is about being present. Only when I got to the center and could stop and look up at the towering trees, or when I finished it at the place I had begun and could again stop to catch the morn­ing sun through the pines, did I sense the larger world.

In recent days I have be­come aware that my feet have started to learn the labyrinth. Not so much that I can walk it without thinking, thus defeating the point of a labyrinth, but enough that I can see ahead or, perhaps more accurately, feel ahead. I am still walking it pur­posely, and now there is an added layer of under­stand­ing of where I am going. I can now occasionally look at that morn­ing sun just start­ing to filter through the pines before looking back down.

It oc­curred to me this morn­ing while walking that this new stage of knowing the labyrinth is an ex­cel­lent model for where I am in the pro­gres­sion of my myeloma.

My over­all quality of life has been steadily dropping, not because I am relapsing, but because my body has taken a lot over the now 15 and a half years since I was diag­nosed. I have been in con­stant treat­ment, with only a few very short breaks, for the last seven and a half years. That is a lot of toll on the body. The label for my myeloma is “persistent,” and because it is persistent, it is always pushing against me and against the treat­ment. It is indeed a ponderous chain I drag around daily.

But I have started to learn this newest level of feeling lousy, much like learning the labyrinth. I know what it holds, I know how it feels. I know that if I wake at 2:30 a.m. because the myeloma sickness is rolling through me, I can remind myself it’s just that, take some acet­amin­o­phen (paracetamol, Tylenol) if it’s really strong, and usually go back to sleep. I have learned to tell myself it is ac­ceptable – actually, more than ac­ceptable! – to not com­plete a task “right now” if I am not up to it, whether that task is a big one like planting a garden, or as small as folding towels out of a dryer.

More im­por­tantly, I have come to realize that learning these things, to step away from a task, to wrap myself back into sleep despite feeling ill, is not giving into the dis­ease, but instead finding ways to move for­ward with my life even as my life con­tinues to wind down.

So I walk the labyrinth, within and without, in all kinds of weather, in contemplation and in gratitude.

April Nelson 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 .

Photo of April Nelson, monthly columnist at The Myeloma Beacon.
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7 Comments »

  • Julia Munson said:

    I love your columns, April. They’re poetry.

    Without being flippant, you stare this pest in the eye, and dare it to take your joy.

    Very encouraging friend!

  • Maura B said:

    April, I thank you for your column. You share your story that sings. Hope you are able to see your family and this messy virus comes under control.

  • Marjorie Smith said:

    Dear April, thanks so much for your column. I can imagine the labyrinth and, because of your lovely writing, some of what life is like for you. I wish I could walk in your labyrinth in the morning as the sun begins to bring warmth and light to the day. Mostly I wish for some good days for you despite the awful things raging around us right now.

  • Nancy Shamanna said:

    Dear April, thanks for your column. This summer seems to be coming up as a quieter one than usual, in terms of travelling, especially to see family. I hope that you can connect with them somehow. Near where my mother lives, on Vancouver Island, there is a garden that is open to the public and funded by donation. Volunteers, including Mom, run the garden. It sounds quite a bit like the arboretum and labyrinth that you describe. It is meant to bring peace and tranquility to the visitors, and there is a flat labyrinth there too! I always walk it when I am there. At first I used to sort of skip through it quickly, probably missing the point of it, but now I walk it more slowly. The last time I was there was in September 2019. I hope that you have a nice summer, despite all that is raging around you.

  • Susan Mandel said:

    I love the sound of that labyrinth! Sometimes we discover new things that we would have never bothered with if it weren't for something that forces us into containment. Glad to hear your numbers didn't jump so high that your doctor thought it necessary to switch treatments. Take care!

  • Patty Muckala said:

    I have enjoyed reading your column, as always. The labyrinth sounds wonderful. I love that you walk it slowly and are able to be reflective as you go. I have always walked quickly, power walked if you will. I am pretty much known for my quick, brisk pace. However, like you, I have learned to slow down and live in the moment. Sun rises are the best part of my day. We live by beautiful Lake Superior, and we try to walk the LakeWalk in the mornings when the east wind isn’t brutal. It’s an amazing start to our day to see the sun reflected over the water. Starting your day walking the labyrinth is so positive. I can imagine the tall trees and the beautiful pathways from your descriptive words. Thank you for a lovely column. I hope your numbers return to a straight line once again. Perhaps this time of reflection each day will calm your soul as well as your body. We can only hope. Hang in there!

  • Tabitha Burns said:

    April, thank you so much for your column. It was so beautifully written and meaningfully laced with imagery that I felt like I was there. There is a similar outdoor labyrinth in the museum district in my city, and I find that it is such a peaceful thing to walk it and be alone with my thoughts.

    Similar to your experience, I see the toll that ongoing treatment is taking on my husband as well. Sometimes I wonder what's worse for him, the physical symptoms of his myeloma, or the psychological ones?

    I am so sorry to hear about your bouncing numbers! I hope that they will normalize soon and you can avoid going on a new treatment. I hope that your reflective moments on the labyrinth will ease your difficult days.