Myeloma In Paradise: Things My Dad Taught Me
I am VERY lucky. My Dad taught me how to live with multiple myeloma.
Aloha, my name is Tom Shell, and I am a 51-year-old man from Hawaii who has been living with multiple myeloma for two years now. While living in Hawaii doesn’t help with the medical aspects of myeloma, it certainly doesn’t hurt my mental outlook!
I am a new columnist at The Beacon and will tell you more about myself in future columns. For now, given that it’s Father’s Day in a lot of countries around the world, let me tell you what my Dad taught me.
He didn’t have the disease before me. He didn’t give me step-by-step lessons on how to deal with a bone marrow biopsy or the joy that is dexamethasone (Decadron). He didn’t even tell me how to tell my children their Dad has a serious illness.
Instead, he constantly gives me an example of how to do the best I can with what I’ve got today.
You see, while my Dad doesn’t have multiple myeloma, he does have multiple sclerosis, or MS. He was diagnosed with his life-altering disease about 1967 when he was only 27 years old. He has lived with his terminal disease for a mind blowing 47 years now. His story is very relevant to those of us who hope to live with multiple myeloma for many years.
Dad was a very active outdoorsman; he had a new family, a struggling family business, a new mortgage, and all the aspirations of a smart 27-year old man back in the 1960s. He worked 70 hours a week, fished another 20 hours a week, hunted, and fixed the old house we lived in the rest of the time. He was a star athlete in high school and strong enough to carry the world on his shoulders.
His MS hit hard and slow. He didn’t immediately become disabled. Instead, he had to endure a constant deterioration in his physical condition and abilities (sound familiar?). First his vision went double for a while. Then his balance started to deteriorate along with his ability to run. Eventually his ability to even walk became a struggle. Each setback came suddenly and never went completely away.
For a man who owned a large fishing and hunting retail store and who would rather hike into a remote trout stream in Northern Michigan than almost anything else, his condition was getting real hard to take. His inability to walk normally had a negative impact on his business. The loss of business was really hurting us financially. Every day it seemed he woke up with less capability than the day before. Dad was hurting.
So what did he do?
He did the best he could with what he had that day.
It was and continues to be really that simple. My Dad wakes up every day and does the best he can with what he has that day. When hiking to those streams became impossible, he fished from his boat. When getting into a small boat became too hard, he fished from the shore. When walking through a field to go rabbit hunting got too difficult, he quit hunting and spent more time volunteering at his church. When he could no longer work at all, Mom went to work and picked up the slack.
Eventually the ice and snow of Michigan became too difficult to manage, so he and Mom closed the business and moved to her native Arizona. It was no small feat to move to the desert for a man whose whole life revolved around fishing the Great Lakes of Michigan. He adapted to his new surroundings by fishing in the small puddles and lakes around Tucson for fish that were so small he previously wouldn’t have used them for bait.
This ability to adapt and make the best of life is essential for those of us who want to make the most of every day we live with multiple myeloma. We have lost and will continue to lose some of our previous abilities – both physical and mental – until we die. We can’t change this any more than my Dad can. I have to continuously motivate myself to push myself as far as I can (sometimes too far) so that I can get the most out of my day. This often involves accepting some physical discomfort and pain. Sometimes I can’t keep up with everybody the way I used to, but this too I have to accept as it’s better to me than quitting all together. Some activities I have had to give up all together but I found new ones to occupy myself.
Today Dad is still doing the best he can. His ability to even hold a fishing rod anymore is gone. He struggles to get himself out of bed and into his wheelchair. Some days he can’t even manage this.
However, instead of focusing on his physical achievements, he focuses his energy now on helping others he considers in worse shape than himself. Every day he calls many shut-in seniors and some juniors who just need a loving voice on the other end of the phone. This is what he can do with what he’s got today. This makes him just as happy as reeling in a 10-pound steelhead trout from the frozen shores of Lake Huron. Being truly happy is really all we can ask of this life.
Those of us with any life-altering disease should emulate my Dad. I’m super proud of you, Dad.
Thanks for showing me how to live with multiple myeloma.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month. The title that he chose for his column, “Myeloma In Paradise,” is in reference to one of Hawaii's unofficial nicknames, Paradise.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thank you so much for sharing your fathers beliefs and ways he overcame his horrible illness!
I am 53 years old and was diagnosed with MM Nov 2012. I live everyday the best I can. Sometimes I just feel I had enough. But I have a wonderful husband and children who cheer me up
My oncologist told me that it all depends on how one think about it. If one gives up, you have lost the race. But if one see all the positive things one can still do, then your chance to live another 10 or more years is possible. I had to stop teaching, but now I can spend quality time with my children and grandchildren!
Please tell your father that I will now try much harder to enjoy everyday with a smile.
Regards
Linda Uys
Hi, Tom - thanks for sharing your inaugural Beacon column with us, I enjoyed reading it!
It particularly hit home because we have some close parallels in our stories.
In 2008, I was diagnosed with myeloma at 49 years old and my mother, also a Michigander (I'm holding up my palm to show you where!), was diagnosed with multiple sclerosis, also in her late 40s.
Unfortunately, like a small segment of MS patients, she progressed quickly and passed away in 1987 at the age of 55. In true Michigan fashion, she enjoyed a very active lifestyle hunting and fishing across the Great Lakes State and beyond.
I agree with you that our parents' ongoing struggles with chronic illness (my dad died from cancer fifteen years ago) have shown us a courage and strength which has steeled us for the ups-and-downs of our battles. Importantly, they taught us what not giving up looks like.
We are fortunate that advances have come in the treatment of both MM and MS – I wish you and your dad good health ahead.
Happy Father’s Day! I’m looking forward to your next column.
Aloha Tom and thanks for your column. My husband and I love Hawaii, and we have been there many times. To me it seems a place of peace and a paradise on Earth! Such a wonderful contrast to our land of ice and snow in the winters here. (I love winter but it's great to get a break from it sometimes.) Happy Father's Day and I hope that your myeloma treatments help you a lot to live a full life with your family.
Your dad and I are contemporaries. Except I'm the one with MM - since 2008. My kids are 40-50 (seven of them), and all, thank God, well!
Greet him for me and thank him for this wisdom he's passed on to us through you!
And I'm another Michigander. See my left hand! Little finger.
Julia Munson
Calumet, MI
Welcome, Tom, and great opening column. Lots of food for thought. Looking forward to future columns. My father's day wish today, as always, is to go fishing with my two boys, ages 6 and 9. We are headed out soon to catch bluegills, perch, etc. I am in heaven. Best. Terry L.
Excellent first column!
Welcome, welcome, welcome!
Well said, Tom!
I brought my 90 year old father, who is in a nursing home, some big band music yesterday, along with his grown grandchildren, and it was just a little bit of happiness for all of us.
With both my kids home this weekend I've been receiving the BIGGEST hugs on the planet.
Today is HAPPINESS all day!!
Listen...just one more time:
http://www.youtube.com/watch?v=y6Sxv-sUYtM
[Pharrell Williams - Happy (Official Music Video)]
Best,
Steve C.
Welcome Tom! Thanks for sharing your dad's story. I needed the reminder this week. All so true! We all face something that's not easy and it's all about attitude and adaptation. You said it so well.
Thanks also Steve for the Happy link. That song always makes me feel so much better.
"Happiness is the truth!"
Hi Tom,
You are spot on.
"This ability to adapt and make the best of life is essential for those of us who want to make the most of every day we live with multiple myeloma."
Thanks for your great article, it put a smile on my dial (& a few tears as well).
All the best.
Thank you for the excellent article ... it came at just the right time to get me out of a 'woe is me' mood that I've been in for the past few days. I am 68, was diagnosed last April following 9 months of excruciating back pain (finally diagnosed following 5 compressed vertebra fractures), following a summer in treatment away from home, I had my SCT in October, and returned to work part-time two weeks ago!
Reading about you and your Dad was just what I needed to remind myself just how incredibly good I am doing! So thank you for taking the time to share. As a result of reading how your Dad adapted to do what he could do to help others, I decided it was time to start volunteering again with Meals on Wheels ... it's the least I can do. Thanks again, Jean
Great Story! Your dad sounds like a remarkable person. Thank you for sharing.
Aloha To All,
Thank you SOOOO much for your overly kind responses! I am moved to tears (literally) by your kindness and especially to know that my Dad's story helped somebody. I wanted to write for the Beacon so that I might actually make a difference to somebody and your response tells me that I have. I am overjoyed beyond words!
Please keep your chins up and try as hard as you can to see the value of each new sunrise.
Thank you again for your overwhelming response!!
Aloha
Tom Shell
Hi, Tom!
Thank you so much for your column. You made a true, positive difference for me when I read it today. The afternoon is certainly brighter for me now. Thank you for sharing the aloha spirit!
I sure hope that your mm treatments will go well for you. Wishing you a good day there in Hawaii.
Sylvia B (in NC)
Tom, Your father is an inspiration to all of us, and an example of how one can overcome in the face of a tragic disease. I was diagnosed with MM 6 months ago and had a great deal of difficulty dealing with the diagnosis and what my new life would be like. Although I lost my father 2 years ago, and I wish I had him to talk to now, he taught me a great deal about life, living and people. I miss him terribly. I wish you the very best.
Hi Tom,
This was so beautiful, I am welling up as I type. My husband, also a Tom, was recently diagnosed with MM at 43 and we have a very young family. Like you, his greatest inspiration was his father, who passed away last year at age 76 with pancreatic cancer. He was an amazing man and lived life to its fullest and I know that no matter what happens, my husband will do the same.
We have spent a vacation every year on the Big Island, always with my in-laws who loved Hawaii and over 40 years became part-time residents with annual 3 month stays. The islands give me such peace and serenity and the people are amazing. I am sure the culture of Ohana is giving you much strength in your fight. Best wishes, Lori
Hi Tom,
You indeed are blessed to have such a special Father. He must have been proud to have read this wonderful piece that you wrote about him. My Dad also developed a physical condition later in his life. He continues to be a great inspiration to me. Great to read such a positive column.
Mark
Aloha Dan, Lori, & Mark,
My father is reading this thread so he will be able to share your comments. Thank you so much for continuing to remind me how special he really is. I tend to take him for granted some times.
For those who are recently diagnosed, please take heart that our disease is often much more similar to MS than aggressive diseases like pancreatic cancer. I lost a very close friend to pancreatic cancer about 6 months before my diagnosis and it served to make me overly pessimistic. Your first year after diagnosis will be a roller coaster of emotions and symptoms, but we (MM patients) are often blessed to be able to look back on our "first" year. Try to enjoy every day to its fullest.
Aloha
Tom Shell
Dear Tom, I just read your first 2 columns. You brought me to happy hopeful tears. My man has m.m and we have done the same thing and have down sized life. The story of your dad was precious and I pray you, your dad, and your family have many more years to bless us with your wisdom!! We all need hope and to enjoy each day we are given, because NONE of us gets out of this alive. Be well and aloha!!
Aloha Megan,
Thank you so much for your kind wishes! I am humbled by your tears. Just like you folks, I am just trying to do the best I can. I would have answered sooner, but I have been busy fishing and playing with my kids! That is truly a blessing!!
Aloha
Tom
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