Myeloma In Paradise: What If I Were Cured Today?
I find it fascinating that, in the almost three years since I was diagnosed with terminal multiple myeloma, I haven’t until recently begun to daydream seriously about what I would do if I were pronounced permanently cured today.
I’m not talking about remission, substantial clinical response, minimal residual disease, or any of the other “close-but-not-quite-there” phrases our doctors use, but simply “cured.”
I guess it has taken me this long to absorb my status as a cancer patient and to reach a level of comfort in my treatment to be able to dream about what this would mean. I have spent the last three years figuring out how to be sick and a good patient; I didn’t have enough peripheral vision to look beyond that.
If you have read my columns in the past, you may notice that I am quite focused on seizing the day as much as possible. Living each hour as if it were my last. Well, what if my expiration date was repealed? What if all of our death sentences were granted a reprieve by the big Governor in the sky?
Would I begin to slip back into my old habits of taking my family for granted? Would I once again seek to enhance my meager fortune before I become too old to work? How about my health? Would I also take it for granted once again?
I have recently watched the first two thirds of the PBS documentary “Cancer – The Emperor Of All Maladies” on TV. It included some wonderful stories of terribly sick cancer patients who had no hope of survival and who received a new treatment that not only brought them back from the brink of death but left them cured of their cancer. The program “60 Minutes” also had an episode recently highlighting the treatment of exceptionally aggressive brain tumors with a genetically engineered version of the polio virus that left some of the patients in the study astoundingly cured.
Maybe these shows have motivated me to speculate “what if that was me?” I’m sure I’m not alone in this dreaming.
So really, what would change in my life?
The most obvious and immediate one would be the end to my part-time job of being a patient.
My primary care doc gave me some good advice when I was first diagnosed. She told me to treat my disease as a part-time job. It’s not something you necessarily want to do, but you just have to do. Accept that you are going to have to spend many hours each month driving to appointments; that once you get there, you will face lines waiting to get into the parking garage; and that you then have to wait for a long time to see the doctor, phlebotomist, or treatment nurses. Since I know what to expect and how unavoidable it is, I don’t get upset about it anymore. It’s just what I have to do.
With these newfound hours not going to these appointments, I might have to actually get another job! Maybe I could learn a new profession designing more effective ways to help the elderly park their cars? Maybe I could learn a new language? Or spend time becoming a better fisherman?
Beyond these hours saved, I would need to find some new overwhelming thing to complain and worry about. I’m actually not a real big complainer or a heavy-duty worrier, but when I do, myeloma is often the root cause.
What would I change in regards to my health? Would I start running marathons? Maybe lose lots of weight and become one of those fitness guys you see on infomercials before quickly changing the channel? I’d love to be the 70-year-old man with six-pack abs and buns of steel, but it does sound like a lot of work.
Would my relationships change if I became cured? Would I go back to taking my wife and children for granted? To never considering what will happen to them if I’m not there? Can’t see that bad habit coming back ever.
How about my financial life? I spent most of my pre-diagnosis years striving hard to make more and more money in order to live the good life and provide for my children once I was gone. After diagnosis, we were forced to sell our expensive farmhouse and move to a much smaller home. I also backed off on my business considerably in order to spend more time on treatment and enjoying what time I have left. Can’t see this one changing much. I’ve really grown to enjoy our smaller and easier-to-care-for home. The fact that we can afford it a lot easier is a huge bonus I completely undervalued before diagnosis.
Fishing, golfing, and hunting instead of more time at the job site really takes no explanation.
I guess the bottom line here is that, if I were pronounced cured tomorrow, I probably wouldn’t change a whole lot.
Having multiple myeloma has profoundly changed my life. In most ways, it is actually for the better (if you can get past the whole incurable terminal disease thing). Other than the physical effects of having myeloma, I can unequivocally state that I enjoy my life more now than I did before diagnosis.
What makes me sad is that it took this profound diagnosis to get me there. What a shame. What a waste. There is almost nothing in my post-diagnosis life that I couldn’t have done in my pre-diagnosis life. Why didn’t I do it?
If I am pronounced cured tomorrow, I hope that I will never lose the insight I have gained through this experience. I hope that we can all achieve this seemingly unreachable dream and spend countless hours with our loved ones dreaming about ways to spend our non-myeloma lives.
Let us never forget that life is what happens on the way to our goals.
Aloha 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 .
I thought this was a great column, Tom.
Yes, none of us would choose the myeloma life, but it does indeed push us to examine what is most important in our lives and to appreciate those things.
Thank you for sharing,
Joanie (caregiver/advocate for spouse in WI)
In this life that I'm living now, that we're all living, I've discovered special little things. I love to sit and watch the chickadees and finches and even the blackbirds eating at our feeder outside the window. At one time I would have considered this a waste of time — or something that I would never admit I did — but now I find it one of the greatest little pleasures in life.
That's what having a terminal disease does to you.
And it's a good thing.
Thank you for sharing the special things in your life.
Julia Munson
Sometimes the questions are more important than the answers. Give the question time to percolate. Sounds like you are doing that already. Every day I try to ask 'What's important'?
RT
Great column Tom,
I have to agree with you. Since I was diagnosed 8 years ago, my life has gotten better in many ways. Firstly, I lost 50 lbs by dieting and now feel wonderful and better than I did prior to diagnosis. I golf 2 to 3 times a week, which I love. Being retired allows me lots of time for family and we took a three month snowbird vacation to Florida from snowy New York.
All in all, things are good, but I dream all the time about a cure. I search the Internet constantly for information about new methodologies and procedures for cancer treatment. Right now, my arms are like pin cushions after 8 years of blood tests and treatments. Although my myeloma is stable, I'm aware that this status could change on a dime.
Keep hoping and praying for a cure. You never know, miracles do happen.
Thanks,
Larry Gaito
Great column, Tom, and this is something I often think about.
My diagnosis 12 months ago has forced us to make many changes to our lives and they have brought our whole family closer and greatly improved communication.
I am now fitter and healthier than I have been in years and much more motivated to get things done. I certainly appreciate life more and try not to take it for granted.
I would love a cure for myeloma, and an end to blood tests, appointments, and constant worrying about when it is going to come back, and then of course worrying that my worrying will cause the stress that may make it come back sooner!
Have a great day
Jen
Tom, your article just seemed to sum up my whole life story as well..even though I am in cr, my whole life has changed and my outlook and attitude is changed forever..
Thanks for the story Tom. Having Myeloma has changed my life a lot, but I don't think for the better although I make the best out of it. In my case it changed especially my husband's life as well. To be able to spend as much time as possible with me, he organized his work differently. We do more fun things together and he makes more time free so we can be together. That is a really nice turn in our life. For the rest even now the cancer is under control my body experiences a lot of collateral damage, most of it irreversible. I always have lived my life to the full and that didn't change, but my full life today is totally different than my full life three years ago. No complaints here, I am a life and kicking. Stay safe and inspired.
"What makes me sad is that it took this profound diagnosis to get me there. What a shame. What a waste. There is almost nothing in my post-diagnosis life that I couldn’t have done in my pre-diagnosis life. Why didn’t I do it?" If only our human species could evolve to this plain. Going on 4 years of remission. One of these days it would be nice to say "cured". And I wouldn't change a thing either. It is strange but I feel "lighter", less worried. Blessings!
Tom,
Thanks for this column. When I was diagnosed in August 2013, my initial goal was to be alive for eight years so that I could see both my son and daughter graduate from college. Even though we caught the disease early and I was only 49 and otherwise perfectly healthy, because I've got del 17, I know this isn't a given. Fortunately, I am now living with "stable disease" on only maintenance Velcade (and Zometa and a daily anti-viral, but you other mmers know what I mean
)
With all of the new treatments in the pipeline, I now find myself believing it's possible I will one day be cured. So I also grapple with the issues you bring up - do I really need to save a lot for retirement or will I be dead by then? Would it be better to take that money and spend it on travel and other things I'd love to do now? Etc. and so forth. I suppose these are questions that all "terminal" patients ask themselves.
I very much hope for all of us that we live long enough to be cured and not have myeloma be a part of our daily lives and be on a first name basis with all of our wonderful oncology nurses - but in the meantime, as you point out so well, it is important that we live!
Again, thank you for your words of wisdom.
Aloha All,
It never ceases to amaze me how much inspiration you all provide to me! Your spirit and determination to carry on in the face of death gives me hope for all of us.
I wish we could bottle this and share it with every newly diagnosed patient with cancer or any other serious disease. This is the stuff of life! Better yet would be to share this with healthy folks so they don't have to wait as long as we did.
Thank-you all so much for the feedback. Keep up the great work!
Much Aloha!
Tom
Wonderful column Mr. Shell! Praying for a cure and praying for health and safety for all of us, now and for the times to come! Thanks for writing. Best wishes.
I've thought and written about this, Tom. Not a lot, because I tend to be a "realistic dreamer." Maybe three more years? What would I do? Start pounding out the work product again! Finish three books I've started? Do motivational speaking? Possibly go back to school to become a social worker or maybe hang out a shingle as a cancer navigator? I hear all the time, "no one ever wishes they had worked more on their death bed." Not true in my case! No kids; all I want to do is help as many fellow cancer patients/survivors as I can as fast as I can. If I die in a year or two, that will be my one lament; that I couldn't do more. Thanks for sharing!