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Myeloma In Paradise: What If I Were Cured Today?

By: Tom Shell; Published: April 14, 2015 @ 11:38 am | Comments Disabled

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 Well, what if my expiration date was repealed?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 [1].

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .


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