My Myelomaverse: Living In The Universe Of The Vast Unknown
Ten years ago, I was at my chiropractor seeking help for a chronic low back problem. I’d been seeing her for years with on again, off again back pain, presumably from working as a nurse for many years. While her adjustments were helpful for my back issue, I told her “I just don’t feel like running.” She thought that was strange, coming from me, a runner / jogger, former Ironman triathlete, and typically active and energetic person. So she ordered blood work (who knew chiropractors could do that?).
The result showed continued anemia, which I had been diagnosed with after having parvovirus in the fall, six months prior. My astute primary care doctor saw these results, took a closer look, and told me over the phone, in a quick call, that she was referring me to the local hematologist-oncologist. I figured I was in trouble. More blood tests, a bone marrow biopsy, and some x-rays followed. The results showed elevated protein levels, an M-spike, and 18 percent plasma cells in my bone marrow.
That’s when I became a Smolderer.
Fast forward 10 years, and here I am, at another juncture.
Hi, I’m Else and I have multiple myeloma. My bone marrow biopsy in March showed 60 percent plasma cells, pushing me across the line to active multiple myeloma. I’m 54 years old and a mom, the sole parent of two amazing young men. I live on the edge of the Salish Sea in the beautiful, verdant Pacific Northwest, about 25 minutes from the Canadian border.
I only very recently came out of the closet, so to speak, and told my children about my diagnosis. After spending the last decade dropping in to read the Beacon's columnists from time to time, I have decided to become one. My goal is to share my experiences (and lack thereof), connect with the myeloma community, and perhaps help people who might be going through similar things.
I feel fortunate, so far, to not have anything worse than sky-high IgA levels, an M-spike, and anemia (along with all the things that go with these lab results). I suffer from low energy, and I get winded when I walk up hills. Some days are worse than others.
I’m grateful that I don’t have high-risk chromosomal abnormalities, and as much as the smoldering myeloma diagnosis has been a burden to carry around for 10 years, I’m grateful it was identified so early. I’ve had the luxury of time to educate myself and adjust my lifestyle to the best of my ability to do things that might decrease the odds of progressing, such as maximizing rest, minimizing stress, avoiding infection, cleaning up my diet, and staying active.
Have all these things contributed to my stay in the smoldering category for 10 years? I’ll never know. And that’s the hardest thing. There are so many unknown. I’ve struggled with this for years, but even more so right now.
What is my PET scan going to show? What will those results mean? What happens when I begin treatment? Are the side effects horrible? Will my quality of life take a nosedive? Will the rest of my life be filled with suffering? How will I choreograph the caregivers needed to support me through a stem cell transplant? Will I be able to maintain my responsibilities, including running a household, parenting my teenager, fulfilling my volunteer obligations, and contributing to my relationship in a meaningful way? Will this disease bankrupt me? Will I be a burden on my family and loved ones for the rest of my life? Will I feel as crappy about being a burden in the future as I do now? Will a chance encounter with COVID-19 cut my life shorter than it would have been? Exactly how vulnerable to infection am I?
Some of these questions keep me up at night (I know, not so good when you need to get good sleep). Some of them are too overwhelming to face. Some of them I can’t even wrap my head around. And most of them are pure unknowns.
I suppose my next self-imposed challenge is to learn some more coping mechanisms to deal with all these unknowns, because there are so very many of them. I can imagine that some people can live comfortably with a future full of question marks. I suppose many people have learned how to gracefully navigate their situations.
I suppose that, for now, the best I can do is something my dear therapist taught me years ago, after losing my husband: hold my hand up 12 inches in front my face, palm facing toward me, and say “Right now, I’m going to be here.”
May we all go from strength to strength!
Else Sokol is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. Her column will be published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Aloha Else,
Hang in there! It's much easier to say, I know. Thank you for being a columnist here. There are lots of folks who are at the same spot as you, and your observations are important to them as well as yourself.
You are not alone. I am 8 years into treatment and am still blessed to have a decent life. The treatments are often not as bad as the anticipation of them. After all this time, lots of different treatment regimens, and one stem cell transplant, I am an example of hope that your life will go on. It may be a little different, but it will most likely go on.
For now, be patient. At first the diagnosis (of active myeloma) can be worse than the disease. In time you will understand how this all works for you. Give yourself all the time you need.
Just remember to enjoy every day you have! You are not alone.
Aloha & Carpe Diem
Tom Shell
Thank you, Else, for your column. Sorry to hear you have moved this direction in your journey, but you sound well prepared for whatever lies ahead. At least you have the beauty of the great Pacific Northwest to surround your days.
Hello Else,
Twenty six years ago I was diagnosed with MGUS. Sixteen years ago it became myeloma. Since then, I have become far too familiar with the medical system and undergone numerous treatments. More importantly, I have learned to hold family and friends close, to take advantage of any opportunity to celebrate, and to cherish each day. I have also made many supportive new friends in the myeloma community. While I will never run a marathon, there are very few things important to me that I cannot do.
I am hoping your early diagnosis has spared you the pain of fractures experienced by so many people with myeloma. None of us know our future so, trite as it sounds, “Enjoy something each day.”
Dear Else,
Thanks for joining the Beacon as a columnist. It is nice to get your perspective as a smoldering myeloma patient, and you express this so well. After I sort of 'crashed' into being a myeloma patient, I wished I had been diagnosed sooner, as it might have prevented the vertebral fractures I suffered from. Luckily, my treatments were successful and despite everything, I am still here after 11 years and doing quite well, all things considered. When I was diagnosed, there were not as many treatments available, and I was very frightened that I might not survive very long.
The Pacific Northwest is my second home since I have family there in British Columbia and like to visit several times a year. That is on hold right now due to travel restrictions that I am following due to the COVID-19 crisis, but I often think of the lovely environment of the Salish Sea, especially at this time of year when the flowering trees and rhododendrons are in full bloom!
Take good care of yourself and I hope that your treatments go well also. I look forward to reading your next column.
Dear Else,
I'm very much like you. IgA since diagnosis in August, 2010 (though not smoldering), through many treatments non-stop, a stem cell transplant, losing my husband suddenly 3 years ago, trying a clinical trial for a BCMA-targeted therapy (nothing came of it), giving up my big house for a safer community, dealing with isolation now with the virus.
How to look at this?
Day to day for me to see how I feel with yet another treatment, only once a month. Reading. Crossword puzzles, phone to friends, foreign films. A spiritual belief.
I will think of you in the great Northwest, surrounded by so much beauty.
Dear Else,
Thank you for your wonderful article. Those of us who were diagnosed with MGUS and smoldering myeloma have the advantage of not being shockingly surprised by the myeloma diagnosis. Being somewhat prepared allows us to slip into the diagnosis rather than being catapulted into it.
Stay well,
Marilyn Page
Tom, Thank you for sharing your wise words of hope and support, and I'm glad to hear that you're enjoying a decent life 8 years in. I looked up the word 'aloha', to see what it means (other than the fact that you may hail from Hawaii):
Aloha (/ɑːˈloʊhɑː/; Hawaiian: [əˈloːˌha]) is the Hawaiian word for love, affection, peace, compassion and mercy, that is commonly used as a simple greeting but has a deeper cultural and spiritual significance to native Hawaiians, in which the term is used to define a force that holds together existence. (Wikipedia)
This is awesome!
Mark, I appreciate your kind sentiments. I enjoy reading your column and seeing the world through your lens!
Linda, Wow! You've been at this for a very long time. Thank you for your insights- "enjoy something each day" are important words by which to live.
Nancy, Thank you for the warm welcome. I enjoy reading your column and appreciate you for sharing details of your treatment. Yes, everything is in full bloom and I can imagine that you are familiar with the heady scent that comes in the evening, after the sun has set, especially when the full moon rises. COVID-19 hasn't canceled spring, and it'll be here again next year. And if we can get a handle on this COVID thing, so will you!
Suzanne, August 2010 was my official diagnosis month too. And I'm sorry that you lost your husband; my husband's passing was sudden as well. Life is full of the unexpected, and change seems like the only constant. I'm glad that you have a spiritual practice, and are finding ways to get through this isolation. We can do this!
Marilyn, Thank you for reading. Yes, slipping into the diagnosis has its advantages, although it is hard when you know something is percolating deep inside and you can do nothing but wait.
Hi Else,
Welcome to the Beacon as a columnist! I enjoyed reading your column as it took me back to when I first learned of my disease quite by accident in 2011. I love hiking and being outdoors, and I had noticed that just power walking up a slight incline made me short of breath. At my yearly physical, I mentioned it to my GP, who said she would take a closer look at my blood work. The next thing I knew, I was sent to a hematologist to get it checked out. Lo and behold, I was in the smoldering stage of multiple myeloma, which, incidentally, I had never heard of in my life. A few years later, I was in the MGUS stage. I didn’t share any of my health news with anyone except my husband. Actually, I was not worried, as I felt my doctor had a good handle on this disease as we watched it develop slowly.
Then, at the end of 2015, my hematologist suggested that I should start thinking about having a stem cell transplant. I was shocked, as I felt I was healthy and feeling great. His thinking was that while I was healthy would be a good time to do it instead of waiting until I was really sick. Boy, was he right! In 2016 I had the transplant after having the stem cells collected a few years earlier when I was told many times that it was rare to see hemoglobin in double digits! I had been told to plan at least six months to recover from the transplant, but due to my basically good health going in, my recovery was about a month before I was allowed home. I’ve been on maintenance therapy for five years. I do pretty much whatever I like. I still hike, but not aggressively. I tend to take things a little slower these days and appreciate them more.
I agree with the other comments. Find something to enjoy or be in “awe of” each day. Life is good, and in the Pacific Northwest, you are surrounded by beauty. How lucky is that?
My advice, which has served me well, is simply this: Don’t worry until you have something to worry about! Trust your doctors! Hang in there! Great medical strides are being made in multiple myeloma towards finding a cure! There is hope!
Patty
Else – I, too, saw a chiropractor prior to my diagnosis. I shudder to think of what could have happened if he had pushed hard enough during an adjustment. But here I am, thank the Lord, and doing well. I'm also IgA and had lots of bone involvement at diagnosis. I was 42 but know I'd had it for many years, at least MGUS and then smoldering. My chiropractor, sadly, wasn't going to order blood work, as he just didn't follow conventional medicine. I'm just glad I was able to finally get decent medical attention and have responded well so far. I pray you experience the same! I look forward to more articles.
Dear Else, Many thanks for your column. I enjoyed reading it, and I am glad you have become a columnist. However, I am sorry that you find yourself in this unenviable position. Good luck with what lies ahead for you. I hope you are lucky and don’t suffer too many unpleasant side effects. I am also IgA and, although it wasn’t diagnosed, I smoldered for a long while before I was treated. With very best wishes to you.
Hi Patty, Thank you for sharing your story. I'm glad you have managed to put worry aside, and that you're being proactive about your care. I appreciate your words of wisdom, the 'don't worry' part speaks to me. Although I'm a planner, and thinking ahead (which can be equated with worry), can kick up the worry a notch. But ultimately, if I have gone through the thought experiment of plans A and B, it makes me feel more calm. It's quite a game of chasing my tail!
Susan, Hello! I'm so glad your chiropractor didn't do any damage. Although I haven't seen mine for many years, every time I have a negative bone scan, I tell myself that it's safe to go get a few kinks worked out, and then I chicken out. Thank you for the well-wishes!
Hello Marjorie, Thank you for your warm welcome. I really enjoy reading your column, and find your honesty refreshing and very helpful. I hope you're having a good week!
Dear Else and all responders,
My how brave and inspiring you all are!
My IgM MGUS with a 1.0 g/dL M-spike was diagnosed in 2015 while everything that could cause high blood calcium and rock bottom vitamin D was being checked looking for / diagnosing parathyroid disease; then surgery to remove the offender in 2017; it migrated to “high-risk smoldering myeloma” with chromosomal abnormalities. Since then, roller-coasting M-spike as high as 1.6 and as low as 1.2 (my last reading in March); the next is scheduled for July.
My wonderful hematologist told me 2 years ago that he would be shocked if I ever progress into full blown multiple myeloma, but your “schedule,” Else, and that of Linda L, certainly tell me that it is possible.
All stay safe and as well as possible.
Beautiful writing. Welcome!
April - Thank you, and I hope your spirits are staying buoyed by the beauty of spring. I always appreciate reading your wise words and look forward to your next column.
Mary Helen - So many of us have been diagnosed by 'incidental findings.' Thank you for sharing your story. May you smolder for a very long time.
Hello Else,
I am so delighted to see you as a new columnist for the Beacon. I am a neighbor of yours, as I live in Birch Bay. I was diagnosed with high risk smoldering myeloma about 2 years ago and have been stable ever since, although my numbers are starting to stretch a little out of range at this time.
Blessings on your journey,
Suzanne
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