Myeloma In Paradise: It’s A Matter Of Perspective
I struggled mightily with my column this month. I started, stopped, started again, and finally gave up on a half-finished story that seemed relevant at the beginning, but eventually got mired in minutiae that my heart just wasn’t into.
What struck me was that the things that were important a few weeks ago when I started to write seemed exceptionally trivial just a short time later.
What changed?
My perspective.
You see, during this period I was touched by the situations some of our fellow patients are in and the realization how much worse off they are than me. During this period, I also paid a visit to my aging and ailing parents, who are also in what I perceive to be a much more difficult situation than myself.
I know, I know. You are thinking, “Here comes the diatribe about how there is always somebody worse off than yourself.” But that’s not it exactly.
I find myself constantly pulled in two directions: the self-pity for my own (currently) incurable disease, and the suffering of others, many of whom are reading this right now, who are far worse off than me.
On the one hand, here I sit battling terminal cancer at the relatively young age of 52 years with two teen-aged children to raise. I have had this cursed disease for two and a half years now, I have been on chemotherapy for about 18 months, and sometimes I just don’t feel like getting out of bed in the morning. The medicine makes me tired, grumpy, and confused. It gives me diarrhea and leaves me feeling like a day-old dish cloth. The disease causes me fatigue and regular bouts of colitis.
I am constantly getting new aches and pains from I don’t know what, and my vision is rapidly getting worse. I constantly have to monitor my various blood levels. I have to travel to visit my oncologist at least once a month. On top of all these daily nuisances, I don’t know when I am going to get worse or how much longer I will even be on this earth.
And worst of all, I can’t even drink beer while I take this medicine! Poor me!
The obvious other side of the coin is that many of our fellow patients would kill for my list of complaints. Lots of you are seriously hurting, battling daily doses of chemotherapy that are causing neuropathy, nausea, and severe blood deficiencies. For those of you who have been diagnosed long ago, I’m sure your list of maladies is varied and long.
My own parents are suffering the challenges of my father’s 47-year battle with multiple sclerosis, my mother’s debilitating rheumatoid arthritis, and the general effects of being in their 70’s. I also see my mother’s struggle to be a caregiver to my dad.
The suffering of others make my problems seem pretty trivial.
I want to give advice, especially to the newly diagnosed patients out there, but do I really have the right to do so? How can I provide any insight to those of you who are worse off than myself? How can any of us do that?
You see, we can always find others who are both better off and worse off than ourselves. It’s always been that way, and it always will be. However, insight does not flow in only one direction, from those who are better off to those who are worse off. We all have something to offer each other.
For example, I do not know the best way to manage the pain and discomfort of neuropathy. I haven’t experienced it, and I have no right to offer advice on how to relieve it. Same goes for my father’s bed sores and my mother’s crippling arthritis.
What I can offer, though, is the perspective (in my case, hope and positive outlook) that I have gained through my own experience. While this may not be a concrete solution to a concrete problem, it may open the mind a crack for some folks to see a possibility that may make their individual problem better.
My experience with myeloma has changed me significantly, as I am sure yours, or the myeloma of your loved one, has changed you.
It has caused me to become vigilant in seeking out the best of each of my days. It has required me to become dramatically more patient with situations that I cannot control. I have been given the opportunity to re-order my values so that the things I truly find valuable are put first. It has allowed me to find out what real pain is about (think needle stick versus bone marrow biopsy versus deep bone pain). It has given me the opportunity to gain just a smidgen of understanding into the pain and suffering of others.
These perspectives are quite different, or exceptionally enhanced, compared to the ones I held for the first 49 years of my pre-myeloma life.
My hope during this holiday season is that you are able to find the ways myeloma has changed your life for the better. That’s not to say that we are happy to have myeloma, but, instead, that not all of it is negative.
Which of your perspectives have changed? Those of us looking for a bright spot in our day would love to hear about it.
As for me, I will try to maintain a proper perspective.
Mele Kalikimaka and Carpe Diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thanks for the article Tom. I'm on Revlimid and dex, and I get really tired and week at times. People look at me and say that I look fine, my brother told me over Thanksgiving that, to look at me, a person couldn't tell anything was the matter. I took an early retirement in 2011 because of my fatigue. I had a stem cell transplant in 2011, and a year later my myeloma returned. But, like you wrote, there are so many blessings to count. I read a phrase once and it stated: Diseases can be healing. You realize what's in your heart and what means the most to you fast. Things you put off, you start to do.
Dear Tom,
Many of your statements are very true in my life as well. I read all posts and hopefully I should also be able to contribute a well-drafted
essay as a column next year. That is a mini New Year resolution.
Best Wishes
Well, come to think about it, I did qualify this year for a disabled parking plaque!
Sees the daze!
Well spoken. Hopefully you and your family will stay strong
Great article. Thanks Tom. One question - Why can't you drink beer? A ballgame and a six pack work wonders when I am feeling down.
Hi, Tom,
Thank you very much for your column. Merry Christmas and Happy New Year to you and your family.
As I sit with my sleeping husband in his hospital room post-ASCT, I very much appreciate your article. The effort you put into sharing your internal struggle helps me so much.
My husband is at his nadir, we hope. He just doesn't have the energy to even think about doing anything. And that is ok. He is doing what he is supposed to be doing right now, which is healing.
But what I've noticed about this experience is that it is very important to keep smiling. The staff here are wonderful, positive, upbeat, smiling people. They joke with us and laugh with us.
I truly think it is about outlook.
I believe healing is so much more likely if one can only stay positive. And a smile is the easiest way to be positive. And I'm not so naïve to think it is easy because, since his diagnosis, it has become so much harder to stay positive. But I sincerely believe it is an important part of treatment.
So, again, I thank you for your article with a smile on my face. You made a huge difference to me today.
You are right on. Myeloma has changed my life for the better. Each morning when I wake to face the day is a day I can try to make me better than the day before.
Aloha,
Thank you so much for the feedback to this article. I am so honored to have affected your day that words cannot suffice.
JoAnn, Gilbert, and Sesha - Thank you for the encouragement.
Cindy - Your response is the reason I write. Thank you very much for taking the time to let me know and to share your story with others. Please try to keep your chins up during this difficult time. We are there with you in spirit.
Steve - Alcohol and my steroid, hydroxyprednisolone, don't mix well. It can cause internal bleeding and just makes me feel generally crappy. Enjoy your close parking - especially during the crazy shopping season!
Elizabeth - You wrote what I was feeling better than I did! I understand completely. Thank you for summing it up so nicely.
Aloha and Carpe Diem
Tom
I very much appreciated your column, Tom. I agree with most of the positives mentioned. It sounds strange, but for me the underlying positive is awareness of mortality. All of us know we are going to die some day, but until you get a diagnosis of something like chronic heart failure or myeloma, there is a little bit of a feeling of "but not me." The diagnosis itself is a wake up call to choose wisely in deciding how to spend time, energy, and money. Now I don't feel compelled to finish a boring book, to socialize with people who are toxic, or to continue singing with a group that is taking more time and energy than I can afford just because other members want me to.
Instead, I have freed up my time so that I am able to spend more time with family and friends, and to do the creative writing and art that I kept putting off for years. Also, I was so sick when first diagnosed, and when undergoing the transplant, that every day during which I am not sick is doubly valued (I have been in remission for a year). I now appreciate the smallest things ("look at me! I can pick up something off the floor all by myself!"). Finally, as much as possible, I don't put off until tomorrow what I can do today, because I don't know what challenges tomorrow will bring.
Happy Holidays to everyone. Ginny
Mele Kalimaka and Aloha, Tom! I appreciate reading about your perspectives on myeloma, and hope that you and your family have a nice holiday season.
Hi, Tom!
Thank you so much for your column this month. For me, I guess, I just try to tell myself that each day is a gift and to accept this gift. When my life was busier (pre-mm!), I don't think I thought about the beginning of each day, but now I do and before I get out of bed. It helps. Even when the weather here (not Hawaii!) is not great, I don't mind like I used to. A new perspective.
Wishing you and your family a good day and happy holiday.
Sylvia
Tom
You can enjoy the taste of fine beer. Becks has an de-alcoholized beer that tastes great. If you want the alcohol effect, well that's not there. However the look, the aroma and the taste are there. Try it you will like it.
It hit the spot for me and that is not easy since I have German heritage. I had it the other day with a nice German home made dinner of Rouladen, dumplings, and red cabbage. The Becks gave the finishing touch to a great meal.
PS
Vitamin B6 and R-lipoic acid, morning and night, keeps the PN at bay. This is mentioned on a Myeloma Beacon article from a few years back. Also recommended by University of California at San Francisco web site.
Beautifully said, Tom!
Thanks for your article, Tom. I suppose you might say that I'm keeping a positive attitude. I have stage 3 multiple myeloma. Got diagnosed April 2013 and have been in remission about a year. Taking Revlamid (chemo) - it keeps the cancer at bay. I have about 20 more meds to help deal with the damage cancer has done. I have a broken hip, shattered pelvis and sacrum, several broken vertebrae and ribs, and neuropathy in all four limbs.
The docs told me I'd never walk again. I got sick of using a walker; took out my trusty and started walking again! I've worked as a professional upright bassist most of my life, but had to stop due to the injuries. The docs all said I should forget about working again. I recently got a great back brace; I found I can play bass if I wear it; I found the numbness in my fingers (neuropathy) not to be that much of a handicap. I'm practicing a lot and I'm restarting my two groups - should be making money again this spring.
I'm grateful for a great many things. My wonderful wife is happy to take care of me when I need it. I have a pain patch so I don't have much pain. I'm grateful I can drive and hobble around a little. I've mellowed out a lot since I got so sick. I'm grateful for that, too.
I'm not gonna recount all the horrors I went through when I first got diagnosed. After going through all that, it's a miracle for me to be doing so well!
Sorry to ramble on so long. Just wanted to share my progress with you all, and wish you a happy holiday season. We should rejoice that we're all still here!
Aloha Rob,
You are what this is all about! What an inspirational story. I am so glad you were able to find a way to make the most of what you have left. Your ability to fight through so many challenges lets the rest of us know that it is possible. I hope you also are inspired by what you have achieved and may you have a wonderful Holiday season!!
Enjoy your walks and your music.
Aloha
Tom
Rob,
Your comments are an inspiration for me. Thank you for sharing. If you can keep going with all you have dealt with, then so can I!
I am very fortunate that my myeloma diagnosis came early in the disease process and, so far, my sacrum is all that is effected. After several months of induction chemotherapy with Velcade, dex and Revlimid ... as well as Zometa infusions... and now maintenance Revlimid, I continue to have normal labs, practically no pain. I can walk, drive, do all my housework and enjoying my hobby of oil painting. Every day is a blessing and I am so thankful that I am still able to do what I need to do.
I am 74 years old and my outlook is certainly different from a person much younger with children at home would be. I am aware of what I might have to endure down the road, but I choose to just live my life to the fullest while I can and enjoy each day.
I am so thankful for people like you and Tom for sharing with the rest of us.
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