Sean’s Burgundy Thread: How’s Your L-Spike?

I recently enjoyed having an early morning breakfast with a good friend and fellow multiple myeloma patient. Like me, he was diagnosed in his late 40s, has young children, has a challenging career, and is currently in remission.

He half-jokingly shared that while the doctors have gotten his cancer into remission, he can’t quite figure out how to make myeloma fit in with the rest of his life.

“Sean, do you honestly think that it’s possible to be happy and normal ever again with the Big M (as he calls it) looming over our heads?” This is certainly a question that most of us battling myeloma have contemplated in one way or another.

I replied that one of my biggest fears when I was first diagnosed was that my lifespan would be shortened, perhaps dramatically, and that the quality of my life would be grievously impacted.

Although I live with great faith, I still had many concerns. Would I get to see my children grow up? Could I ever go back to work? Would I get to grow old and cantankerous with my wife? How are we going to pay for this? Were my remaining days to be filled with nothing but doom and gloom? Will I ever be normal again? All of you know these worries all-too-well.

Is there anything ‘normal’ about living a life with myeloma? Not a bit.

There is nothing normal about diving head-first into the strange, scary, and confusing arena of cancer. It is a surreal experience to be suddenly immersed in a world of high-dose chemotherapy infusions, stem cell transplants, vertebral surgeries, kidney problems, blood clots, fevers, pain, bone fractures, and the like. If you have trouble embracing these things, take heart, you’re not alone!

I feel as if I’ve been swept down a raging river, clinging to a rubber raft that I can only minimally control through the whitewater. At times, all I can do is hold on tight and see where the river takes me.

My friend knows the details of my struggle with myeloma and sees that, through it all, I’ve managed to keep a smile on my face and a hopeful, positive outlook. He was curious if I could suggest any strategies that he could use to make the road easier for him. As he leaned in closer to hear my secrets, I said:

“The very first thing I do to achieve happiness is to have my friends buy me breakfast!”

He stared at me for a second, chuckled, and happily shoved the bill my way. We began to discuss the fact that, unfortunately, myeloma doesn’t come to us in neat little packages complete with instruction manuals on how to deal with the disease’s everyday stresses. If it did come with such a cheat sheet, I can’t find mine.

Now, after having lived with myeloma for two and a half years, I believe that it is possible for many of us to strike a balance between the hardships that myeloma thrusts upon us and the things we most treasure and don’t want to lose.

I told my buddy that one of my chief strategies is to make sure that my ‘L-spike’ keeps growing. I saw the confusion in his eyes as he said, “L-spike? Do you mean M-spike?”

My friend knows that I put all of my test results into spreadsheets, charts, and graphs. I can tell him what my platelet count was two years ago, what my monoclonal protein numbers (M-spike) were last year, or what my hemoglobin numbers were last week as I sat through my sixty-fourth weekly Velcade (bortezomib) maintenance infusion.  I’m just built this way, and no, I don’t have a pocket protector or calculator on my belt!  I’m just…thorough.

He, on the other hand, likes to keep the details out of his mind. He knows that the ‘numbers’ are important, but he doesn’t eat, breath, and sleep them. That’s his doctor’s job.  There is certainly nothing wrong with his approach – it works for him. But he was curious about this L-spike thing.

I went on to ease his mind that the L-spike wasn’t some new miraculous test that he’d been missing – I simply made it up. I define the L-spike as those critical areas of my Life upon which I concentrate to keep some semblance of happiness and balance.

Some of the categories in my L-spike include:

Living – My world seemingly changed in an instant when I was first diagnosed with multiple myeloma. Not knowing where this road was going to take me, one of the most important decisions I made early on was to ‘live’ every day, not ‘die’ every day.  Everyone, whether they realize it or not, inches toward death. There’s a pleasant thought! But not everyone consciously chooses to make the best out of every day, regardless of their situation. I do.

Laughing – Studies don’t definitively prove that laughter is good medicine, but it sure makes me feel better! To counter some of the negative aspects of living with myeloma, I self-medicate with liberal doses of humor, wit, and comedy via books, movies, and other media. I hang out with funny, positive people (like my wife and kids), and I try to have a light-hearted general outlook on life.

Loving – As corny as it sounds, I believe in the power of love. When I was diagnosed with multiple myeloma, I was showered with an amazing amount of love and support from my family, friends, church, and local community. Having been given much, I am compelled to reach out to others stricken with myeloma. Showing love feels very healing to me.

Learning – I have deliberately set out to learn as much as I can about cancer, multiple myeloma, and its treatment options. Knowledge, even from my meager layman’s perspective, empowers me to make better decisions about my care. Blogs, websites, and myeloma-oriented support groups have provided me with invaluable resources to better understand this mess I’ve gotten myself into!

Letting Go – I have come to the conclusion that I cannot control everything about my myeloma. At the same time, I can’t afford to let the fear of lack of control paralyze me. When all is said and done, I want to look back and honestly say that I did my very best with what I have been given.

Listening – One of the most poignant aspects of my trip through what I lovingly call Myelomaville has been meeting other myeloma patients, caregivers, and medical practitioners. Whether I have met them face-to-face or through listservs, blogs, or myeloma service organizations, I have learned to listen to their stories and take in their collective wisdom as it emerges from this incredible myeloma brain trust.  It is a powerful thing to know that you are not alone.

Don’t misunderstand me; I continue to have lots of days when I don’t feel great. I haven’t been able to get back to my normal work life yet, and I still sit on pins and needles waiting for the most recent tests to show how I’m doing clinically. While things do weigh heavily on my mind, I am at peace with the journey. I refuse to let myeloma take anything away from me without a fight.

Do you have an L-spike or something similar that you use to enhance your life with myeloma? Let me know!

Sean