In last month’s Myeloma Beacon article ^[1], I shared how important it has been during my two year fight against multiple myeloma to stay firmly ‘connected’ to my at-large health care team consisting of family, friends, caregivers, physicians, and other medical professionals all acting in concert on my behalf.

The herculean efforts of so many people and organizations to help myeloma patients like me survive this rare cancer have been both humbling and gratifying. Though the campaign moves on slowly, we have witnessed incremental advances in treatment in the last several years. Without these dedicated people serving on the various fronts, the war against myeloma would be lost.

Having lived this remarkable journey in the belly of the beast, as they say, I have determined that it is critical for my own well-being to also enlist the help of another powerful advocate in this fight – ME!

Sounds simple, doesn’t it? You would think that it would be obvious that we would champion our own care–that we would maintain strict control over the path we take.

But battling myeloma as a patient is anything but easy. If left unchecked, the various stresses encountered can be debilitating both emotionally and physically. The depression, fear, pain, and uncertainty for many sufferers are all too real.

I sort of know what Alice must have felt like tumbling down that rabbit hole to Wonderland. At diagnosis, my life’s comfortable, predictable patterns were all of a sudden thrust into a surreal state of imbalance. I was compelled to learn an odd, new language of unfamiliar medical terms and concepts, and I was subjected to a continuing battery of expensive procedures, pokes, and prods.

I’ve always liked mathematics, but now my world is punctuated with numbers and scores, which have become significant bellwethers to my ability to stay alive.

In many ways, we myeloma patients can feel like we’ve lost control over our lives. It is as if myeloma is calling the shots and that everything in our day-to-day lives, no matter how small, is now filtered through myeloma-colored glasses. And the view isn’t all that great.

Now, I am not a myeloma expert. I only truly know the depth and breadth of my own experience. But sensing a more-than-formidable foe early on, I made a conscious choice to plant my flag, to take a stand and not let myeloma so easily have the upper hand with me. It's more than just positive thinking. It is a call to action.

Following are a few of the things that I have chosen to focus on daily to stay connected to myself in this helter-skelter world interrupted by myeloma.

1. I refuse to allow myeloma to do anything but change me for the better. No question that I hate myeloma, but even in the midst of incredible upheaval, I choose to use this experience to make me a stronger, more compassionate, more in-touch person.

2. Myeloma presents me with a real world opportunity to live my faith. I choose to quietly, but boldly walk my talk. The poignancy and power of this perspective has given me comfort and strength beyond measure. I want my children to see faith put into action.

3. Myeloma will not relegate me to a boring, colorless world. I will not let myeloma steal my passions. As difficult as life is physically, at times, I can still read and write; enjoy politics, food, beauty, and art; watch movies, surf the web, enjoy sports, talk to and interact with my friends around the world, go to church, play with my dogs, make and listen to music, use my imagination, and a million other things!

4. Until my last days, I will reach out to others. Many people have helped me in my time of need. There is no reason why I can’t diligently work to edify and uplift others.

5. I will combat myeloma with humor. As dark a place as the world can be sometimes, I will not let myeloma steal my joy or silence my laughter. It will not make me a bitter person.

6. I believe that myeloma will someday be defeated. I believe in a culture of hope and the possibility of a cure.

These concepts may not be what you would practice while dealing with myeloma. That’s certainly okay. It is your choice. Whatever you do, please don’t let myeloma totally define you. Celebrate the uniqueness that you bring to the world. Keep fighting, and stay connected!

Sean Murray