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Myeloma In Paradise: A State of Confusion

By: Tom Shell; Published: February 12, 2015 @ 2:39 pm | Comments Disabled

I’m confused.

I am a 52-year old man who has always been driven by a sense of duty to my business and career. Earning enough money to support myself and/or my family has been one of the most important things in my life since I was about nine years old.

You see, I was one of those annoying kids who showed up at your door every couple of months trying to sell the latest in greeting cards, seeds, or some sort of candy to help pay my way to camp. After getting old enough to not be satisfied with the prizes offered by the greeting card companies, I graduated to paper routes and regular employment in my parents’ store.

I learned early on that the more I earned my own money, the more independence I had. This realization drove me to keep a job all through middle school, high school, and college. It led me to start my career in business as soon as possible after graduation. I like independence.

Now fast forward about 30 years.

While in the midst of chasing the “golden ring,” I was diagnosed with multiple myeloma. Despite a decidedly more relaxed attitude about making money at age 49, I was still pretty focused on the same thing as I was when I was nine years old.

At the time of my diagnosis, we had a huge mortgage and I was running two businesses with the hope of achieving financial independence sometime before I died quietly of old age sometime in my 90’s.

You get the picture.

Since getting my diagnosis, we have sold our giant mortgaged property and built a smaller place on a property we can afford without a struggle. I was able to shut down one business altogether and scaled back my primary business.

Other than fighting this disease (it is like a part-time job), I am left with enough time to pursue whatever my heart desires. Unfortunately, what my heart desires is lengthy travel to exotic destinations, a decent-size sailboat to explore the South Pacific, and all the money to do both. Here I am with the time but not the means. Before I had the means, but not the time.

This is where I get confused.

When I was first diagnosed with myeloma, I was of course told that it was, and continues to be, a terminal disease. At first I was fairly convinced that no matter what the doctors said, my time was short and I needed to get my affairs in order immediately.

Now that I have lived with the disease for almost three years, I have had time to come to grips with the fact that the end is probably not right around the corner. Indeed, I sometimes have to remind myself that I have a terminal condition at all. As each day goes by and I find myself more and more stable, I am torn between the urge to hurry up and pursue my desires (i.e., spend my money) or slip back into my old ways of focusing on earning more and more and more.

Each news release about myeloma brings word of progress with drugs that may lengthen the survivability of our condition. I am definitely not a fan of having to continue drug therapy indefinitely, but I am also not a big fan of dying. If these drugs are keeping the myeloma at bay, I am going to keep taking them.

As a devoted reader of the Beacon, I have followed the journey many have undertaken before me. While some have fallen pretty quickly, most patients have been able to keep fighting for many years.

So how long do I have?

We recently lost a very close friend to pancreatic cancer. She chose to give up some of her precious time so she could fight her disease harder instead of doing what she wanted to do. Unfortunately, that decision turned out to be a mistake. She never got to make her last trip.

I would love to spend some of our hard-earned savings on an extended trip to Italy, but is this the right thing to do? I am anxious to go on a bow hunting trip to Africa with my sons, but are we going to run out of money before l run out of time?

Conversely, an even worse outcome to me would be to put off some of these adventures only to have the myeloma rear its ugly head and cause me enough disability that I would no longer be able to pursue these trips.

One day, I am pouring through travel sites trying to figure out the best flights to get to Europe. The next day, a client calls me to discuss a new project and I wonder if I need to start emphasizing my business more. The day after that, I go back to wishing that I could just stop answering those calls right now.

It’s not just the money that keeps me answering the phone. It’s all those years selling candy, greeting cards, and newspapers that have formed me into an addicted businessman. I get a real kick out of being sought after for what I do. You don’t get as much respect when you are sitting at home in a chemo fog – no matter how good you are at it!

For now, I think I will take the middle road. I am getting over the impending doom phase of my diagnosis and I will live my life as normal as possible while incorporating what I have learned. I have been given the gift of recognizing how valuable my time actually is.

Since I am able, I will continue to work - but not as hard as before. Since I am able, I will continue to travel as much as I can - but without spending money like I have no tomorrow. I may miss an adventure towards the end of my life, but I will probably be able to avoid the poorhouse.

What have you decided?

Now, about that sailboat ...

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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