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Myeloma In Paradise: Too Busy To Be Sick

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Published: Mar 15, 2016 10:20 am

I just finished putting on a full-size school carnival earlier this month to raise money for our local high school, and I am still exhausted.

The idea of the carnival was born about 10 years ago when some friends and I were talking about raising money for our local school. Like most public schools, ours in Hawaii are horribly underfunded. I have always been good at fundraising in creative ways, and one of my favorite ways to raise funds is having a party.

What is a carnival but a kind of large party? I would say the best kind!

The idea sat with me for all those years but I failed to act on it because I knew it would be a big undertaking requiring a lot of time. I was busy raising a family, paying a mortgage, and running a farm and business.

Then I got the news about my myeloma diagnosis. Suddenly I had to rethink my priorities.

It took me and my wife almost three years to sell the farm, move, build a house, and shrink the business.

During all of these changes in our lives, I underwent initial treatment for myeloma utilizing Velcade (bor­tezo­mib), Revlimid (lenalidomide), and dexamethasone (Decadron). My blood counts stabilized enough that I had my stem cells harvested for transplant, but was able to put off the transplant for now. I have been on maintenance therapy for two years using Revlimid and a steroid called methylprednisolone.

These drugs leave me fatigued, irritable, fuzzy brained, and often with an unpredictable case of the bathroom trots.

When I’m not working or playing, I often like to relax on my easy chair, read a good book, listen to a podcast, or take the dogs for a swim in the ocean. What this down time also gives me, however, is a chance to reflect on how I am feeling physically. Often, it is not so great.

Despite these feelings, I decided I finally had the time to drag back out this crazy carnival idea.

In order to do the project properly, I had to form a non-profit corporation, hire a lawyer, get insurance, and file a variety of forms with the city, state, and US governments. Next on the to-do list was recruiting for a board of directors, negotiating with the carnival operator to convince them it would be worth their while to come to us, and convincing the school administration that we could actually pull all this off without destroying their school.

The final month leading up to the carnival was beyond overwhelming. There were banners to hang, posters to post, sponsors to get, and endless meetings. Meet the police, meet the neighbors, and meet the vendors. We had to organize the power, the parking, the food, and the bathrooms. If we hadn’t had such an awesome team, we surely would have failed.

I was a professional project manager who could build an office and move hundreds of employees without having them miss an hour of work, but this carnival was my most difficult project.

Of course my wife was very worried about me pushing myself too hard. Heck, even I was starting to wonder if I was going to hit the wall at some point. During the preparations for the carnival, I also supported my wife on three large ongoing work projects, traveled to spend time with my terminally ill father, and helped my son through six intensive weeks of a school robotics competition. These tasks took all of my time, energy, and attention. I was too busy to notice how well or bad I felt. I just put one foot in front of the other and plowed through each day.

What I discovered, though, was that the busyness kept me from focusing on how I was feeling. Other than my worst moments of fatigue – and there were a couple – I just didn’t notice that I wasn’t right.

Now don’t get me wrong. I’m not bragging about how tough I am. I love my recliner! I’m not even sure this discovery is good news, since I am lazy enough to be concerned that I have to stay busy in order to feel better. But that is exactly the case. Being busy definitely helps me.

I have had glimpses of this phenomenon before, of course. There were times when I had to push through the discomfort of treatment because something had to be done. I have also noticed that I can sometimes forget I don’t feel good while doing fun things, like fishing, hunting, or golf. I guess the carnival was a good cross between work and pure fun. I just didn’t recognize that being busy is a remedy for the side effects of my medi­cation.

Our carnival turned out great! We had about 20,000 people attend, and our little country community was thrilled to have the chance to see each other and have some fun. We raised over $40,000 for the school and the community groups that participated.

I made it through the entire event without collapsing. I even found the energy to enjoy a cold beer at the end.

I learned a valuable lesson along the way. If I don’t spend my time sitting around thinking about how bad I feel, I sometimes feel better.

Try it and let me know if this works for you as well.

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.

Photo of Tom Shell, monthly columnist at The Myeloma Beacon.
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13 Comments »

  • Hugh Southard said:

    I find the more you stay busy, the more you have moments of normality, the easier the bad stretches seem.

  • Steve Mohr said:

    Tom - Your experience of being so busy that you "just didn't notice I didn't feel right" is one that I can relate to. Although I know that my job performance slipped in some ways due to this disease, being mentally and physically engaged while working for two and half years after my diagnosis was also a good remedy for the side effects of treatment. Thanks for another great column!

  • Courtney Pierce said:

    I agree with each of you. The days I get moving and accomplish goals and to do's I really don't notice the little things that seem to stay with me. Most days I actually feel better when I am moving and doing.

  • JPC said:

    Hi Tom: Sometimes as I get older, I understand a couple of things a little better. There is the song from the New Jersey rocker, John Bon Jovi, "My Life". One of the lines is "I ain't gonna live forever" followed by "I'm just gonna live while I'm alive". Over time, I have come to appreciate that line. While we are all alive, we have to live. The experience of your effort, I think, will stay with you as a great memory from here on out. Thanks for the good story.

  • P.K. Seshadri said:

    I liked this a lot.

    I learned a valuable lesson along the way. If I don’t spend my time sitting around thinking about how bad I feel, I sometimes feel better.

    Try it and let me know if this works for you as well.

    Many thanks, Tom.

  • Angela Perry said:

    Congratulations on your success on both the carnival and recognition to stay engaged, keeping your mind and spirit free from your multiple myeloma.

  • Thomas Shell (author) said:

    Aloha,

    Thank you for your reinforcing comments. After making this discovery, I felt like I should have known that staying busy would help. I almost didn't write this article because I figured it must be obvious. Then I figured that, if it was news to me, it might be something a few other people haven't quite gotten their heads around.

    Now that I have had more time in the last 10 days, I do notice my symptoms quite a bit more. Just knowing that they can be ignored when busy helps me to also not give them center stage when I'm not busy.

    Thank you all for your support!

    Aloha
    Tom

  • Jack said:

    Tom,

    Great column, you are so right – staying busy is the solution, you don't think about myeloma, I don't think about it unless I'm reading
    articles in the Beacon or when I visit my doctor.

    Life is short enough as it is, we need to live life to the fullest.

  • Dottie K said:

    Thanks for the great article.

    Well, I guess I know what you're saying about being busy, but I have forgotten to stay busy. Thanks for your insight and sharing. I'll get busy again!

  • April Nelson said:

    Loved this and I agree with the sentiment 100%.

  • Maureen Nuckols said:

    Thanks for the article. You not only stayed busy, but you had a goal and a purpose, which is part of the equation. You accomplished something important and enjoyed the process.

    Maureen

  • Nancy Shamanna said:

    That is an amazing achievement to organize such a large carnival, Tom! Congratulations!

  • PattyB said:

    Thanks Tom! Another great article from which to learn. Being engaged and being busy is good advice.