Myeloma, Party Of Two: Fishing In The River
Last week my husband Daniel and I returned home after his regular appointment with his myeloma specialist. As we collapsed into the couch, we began our decompression ritual of channel surfing and I caught one of my favorite movies: A River Runs Through It.
The movie is about Norman Maclean and his free-spirited brother Paul, who grow up in rural Montana in the 1920s. Their father, a Presbyterian minister, believed “that there was no clear line between religion and fly fishing,” and so it was amidst the panoramic views of nature that Norm spends his youth studying the art of the essay in the mornings and perfecting the four-count rhythm of a fly fisherman in the afternoons. By the end of the story, Norm has come to understand that the cast of his line upon the dancing rapids is a metaphor for life and the people that he has loved.
As I watched the film and unwound from our day, it occurred to me how much fly fishing is a metaphor for multiple myeloma. Indeed, there is a process for myeloma patients and their families to learn, and while it may be filled with the workaday steps necessary for living with myeloma, for those who would listen, there are deeper truths to find as well.
Most obviously, successful fly fishing requires a lot of skill. As I understand it, this type of fishing combines bait-less lures shaped like large flies with a knowledge of multiple methods for casting your line that mimic the movements of fish in the water. It requires precision, grace, and an understanding of not only where the fish are now, but where they will be.
Similarly, it takes great skill to research and successfully treat multiple myeloma, not only from doctors but from patients as well. Just as good fishermen will study their target and try to predict their behavior, patients need to develop the knowledge and skills to understand their disease and potential treatment options.
They say that if you want to catch a fish, you have to think like a fish. I would go one step further and say that if you want to catch a fish, you have to actively think like a fish. I believe the same is true for living with myeloma. If quality of life is important to you, you need to take an active role in your care and treatment. Inform your clinical team about changes in your condition, no matter how small. Keep current on treatment options and new drug therapies, and discuss them with your doctor. Rely upon your support network – caregivers, family, friends, and clergy – to keep emotionally healthy and focused on your goal: to be swimming in front of your cancer, and not trying to catch up to it.
Good fishermen also have a relationship with uncertainty. Anyone who has ever fished knows that it is an unpredictable adventure. Sometimes the fish are biting, and other times you sit in the quiet, watching the water, ready and waiting to jump into action. Myeloma is like that as well. Those with active myeloma start treatment right away. Those with smoldering myeloma have time to think, and watch, and wait.
For the last three years I have been watching, waiting, and praying that Daniel would remain smoldering until a cure is found. But we have also been mentally preparing for him to start treatment – carefully watching his hemoglobin, M-protein, and free light chain levels for that number that will bring him to the place where so many Beacon readers already are. Indeed, living with smoldering myeloma requires a certain relationship with uncertainty, and while I question whether I’ll ever be at peace with it, I have learned that it does no good to worry about whether the fish will be biting tomorrow, next week, or next year when you have a line in the water today.
I learned that lesson at a very young age.
My great grandmother, Mammaw McCoy, loved to fish. One day, when I was old enough not to fall off the dock, she took my sister and I with her to fish for the very first time.
She probably knew then that I wouldn’t make a good fisherman, because I was the kind of girl who hated to get dirty, but bless her heart for wanting to give me the experience anyway.
I remember getting anxious that we hadn’t caught anything yet, but she told me that the key to good fishing is not to worry about whether the fish are biting, but rather to sit back, enjoy the view, and be ready when they do.
Anxious to please her, I tried my best to emulate Mammaw’s methods. I leaned back in my little folding chair, and lifted my face towards the sun. In the silence, I felt the summer’s warmth on my cheeks. The water rang out with crickets and toads, and I simply let go. I felt pure peace.
I don’t recall what else we talked about that day or if we caught any fish. I do remember feeling happy though. Happy to be there with her. Happy to feel the wood of the dock beneath my feet. Happy to smell Mammaw’s Chantilly perfume mixing with the water and the bait, and hear the sounds of nature all around me.
Today, though she is long gone, I still hear her voice speaking to me, telling me to relax. Enjoy today, she seems to say.
Maybe we can all learn something from the fishermen around us. Henry David Thoreau said, “Many men go fishing all of their lives without knowing that it is not fish they are after.”
I went fishing and unexpectedly found peace. Today, I suspect that we are all fishing for a cure to multiple myeloma. But in its absence, I wish us peace that flows like a wide, glistening river.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. 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 .
Thanks Tabitha for this beautifully written column! I like your analogy about swimming in front of the disease...it seems we are trying to stay one step ahead all of the time. With the help of all of those around us who are concerned with this problem, and by trying to sort it all out ourselves, we give ourselves a better chance too. Best wishes to you and Daniel!
You had me at "A River Runs Through It", Tabitha. Thank you for your column.
Norman Maclean's prose is absolutely wonderful, and the closing paragraphs of "A River Runs Through It" are a perfect example (note: there are no spoilers in this quote):
"Like many fly fishermen in western Montana where the summer days are almost Arctic in length, I often do not start fishing until the cool of the evening. Then in the Arctic half-light of the canyon, all existence fades to a being with my soul and memories and the sounds of the Big Blackfoot River and a four-count rhythm and the hope that a fish will rise.
Eventually, all things merge into one, and a river runs through it. The river was cut by the world's great flood and runs over rocks from the basement of time. On some of those rocks are timeless raindrops. Under the rocks are the words, and some of the words are theirs.
I am haunted by waters."
Tabitha
Learning to relax and enjoy the moment is critical for myeloma patients and their family. Unlike other cancers, we look good. I wish I had a nickel for every time I was told you don't look sick, you look really good.
My wife and I continually remind ourselves to enjoy today. Yesterday is past and we cannot do anything about our mistakes made and done. Tomorrow is still a day away and we cannot change what may arise. The poetic Sermon on the Mount addresses issues that cause all people anxiety, if they worry about them. The sermon ends at Matthew 6:34 telling us to deal with the issues we have today, and let tomorrow arrive and deal with it then. This has saved us enormous anxiety about what might happen with my myeloma. We have gone through 5 years of todays not worry about tomorrows, and we have enjoyed a fairly normal existence. We do everything we used to do, albeit for me, with more rest breaks, but hay, I am 66 and that may be normal for a 66 year old. I have never been 66 before.
Today is great. We gardened, cut some limbs of a Maple tree encroaching on the house - sawn by hand saw. Had some Becks non alcohol beer ( dare anyone to tell it from regular beer-it's German and taste is great). Have not taken a pain med for about 3 years, had a snooze for an hour in the afternoon, and now out to celebrate a friends 40 th wedding anniversary. Tomorrow will be not much different from today, so I don't worry about it. Let the river run through it. I live by Lake Huron, so let the waves run up the beach, like they do everyday, love the sound of water.
Great article TTB!
"A River Runs Through It" is also one of our favorite movies for some of the same reasons. Thank you for now tying it to our journey with multiple myeloma. You are absolutely correct about being actively involved in this journey. Multiple myeloma is such a complex cancer and its treatment appears to be much more complex than other cancers. While my husband is the one with multiple myeloma, I am the one who scours the Beacon, the Internet and the cancer center web pages for news on the disease, the clinical trials and the annual conferences. We both retired just two years ago and were wondering what we were going to do in retirement - we had no idea the living with multiple myeloma and caring for some with multiple myeloma would be ours new "jobs."
As I read, I am amazed at the worldwide effort dedicated to multiple myeloma research and treatment. You mentioned the skill it takes to treat multiple myeloma - immunomoduflatory drugs, proteasome inhibitors, monoclonal antibodies, histone deacetylase inhibitors, etc! Like a fisherman who knows his lures, we are learning the drugs.
Your final point is learning to relax and enjoy each day - we are trying. Perhaps we need to read your article each week so we do not lose focus on living and feeling the sunshine on our faces.
Thanks everyone for your comments!
Nancy, Daniel smoldering myeloma is "relatively" stable, and we keep our fingers crossed between visits that he continues to be. It's so thoughtful of you to ask. I hope that you're doing well too. I read your column each month, and I wish you all the best!
Cheryl, I love those last couple of minutes at the end of the movie! Such poignant and tender reflections. They sure do speak to the human condition, at least in my mind. Thanks so much for sharing with everyone.
Eric, thank you for sharing the scripture, and its message. I appreciate the many prayers of our friends, family, and church that help us feel so supported as we seek to live each day to the fullest. It sounds like you are getting out there and enjoying life too. I'm so glad!
Patty, you are so right about the world wide effort focused on myeloma. I'm encouraged by the researchers hard at work to bring new drugs into the pipeline, normalize standard of care, and find a cure. Surely, this is the best time to have this disease - so much better than 20 years ago!
As far as the relaxing goes, don't be too hard on yourself. Daniel and I have had three years to get used to this "new normal", and believe me, sometimes it feels like to all began yesterday. My 'two cents' worth of advice is to do what you can each day, deal with what you must and then put the rest in the "TBD" column. I've had to learn how to give myself permission to say - "not yet". And to learn what it means to be ok with the present.
Thank you again for your comments on this month's column. I'm thankful for the gifts of peace and beauty around us, and for you, my fellow Beacon friends.
Good health and happy fishing!
Tabitha
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