Riding The Wave – Multiple Myeloma

“Making Light of Myeloma”

A worthwhile post to read by Myeloma Patient, Sean Murray (click title link). I would encourage you to put him on your blog list if you are looking for inspiration and hope in fighting this disease. Sean, as a professional writer, has a lovely way of expressing himself on this very personal journey in a way that resonates with the tragedy of a diagnosis and how it impacts your family, your life, and your body. And yet, he never stops looking at the blessings in his life and the sometimes humor in dealing with MM. Perhaps its just who he is, but perhaps its also helped by the fact that when you are a patient at Little Rock, like Dave and I are, you are milling around with 100’s of other MM patients and caregivers. Because we think we OWN UAMS, in terms of our shear numbers, we just have more opportunities to laugh with others with tears rolling down our faces at the incredible insanity and difficulties of it all. Trust me, we laugh and cry A LOT in Little Rock.

When you begin a new friendship with someone who has perhaps just arrived – you see their total fear, along with the pain of their loved one sitting next to them, and you recognize it. You’ve been where they are.  Veterans reach out and offer hope, perspective and guidance to these folks. No one asks us to do this. It just happens day in and day out, all over the campus at UAMS, in and around the places that Myeloma patients are huddled for scans, tests, lunch, infusions, clinic, etc.

I will never forget when a woman who was staying at the same hotel we were when we arrived for our consultation. She had relapsed. She felt GREAT! She was SHOCKED! Instead of being upset and angry and beaten down, she shrugged with the annoyance that she was going to have to stay! Damn!

Later she saw Dave and I in the waiting area to meet our new doctor and discuss the results of 5 days worth of poking, prodding, scanning, xrays, etc. She came over, sat across from Dave and said, “Honey, you look scared and worried, really, you don’t need to do that. You could not be in a better place.” She reached out and touched Dave. She told of how many years she had been coming here. She encouraged him to have courage. This sort of thing happens over and over and over when you decide to visit Little Rock to learn more about your disease and your opportunity to combat it and perhaps, just maybe, survive it.

Another fellow saw Dave barely moving, walking down the never ending hallway to get to the parking garage. It was like walking with a tiny toddler who had just learned to walk, in terms of the pace. Dave’s head was down and he was concentrating very hard on each step he was taking. This guy passed Dave and turned to him and said, “Hang in there buddy. It gets better. I promise.” I asked him if he was here for treatment. He said, “Yes, I’ve just finished my second transplant.”

Probably the most poignant encounter for me, was a gentlemen and his wife in the MIRT lounge. We were hanging out there waiting to leave. We started chatting. He began telling us of his journey. It was bad. He was resigned to the fact that he was probably not going to make it. It was very matter of fact. He wasn’t angry, but perhaps a twinge of disappointment. He turned to Dave and said, “Listen, don’t you take my experience to heart. My situation is not the norm. YOU are going to have a much better opportunity to make it – please don’t equate my experience with what your experience will be.” I left feeling… well I don’t know what I was feeling in a way that I can articulate. But suffice to say, this guy was dying, nothing more seemed to be able to be done for him, he had resigned to this fact and still, he was reaching out to my frightened husband and encouraging him. His generosity of offering hope and courage while his story was not going to end well was profound.

Over and over again we experienced patients and caregivers reaching out to us unsolicited, gently, kindly. When folks see Dave now, they fawn over him and exclaim how incredible he looks. Often he comes to me afterwards and says, “Do I know them? Who are they?” I laugh. “Oh Dave, you have no idea how many people would give me the most compassionate looks when you started here. You were in bad shape and unengaged.” Now he doesn’t ask anymore. He just accepts their accolades, tells them he’s feeling great! And then asks how they are doing.

Ok, well didn’t mean to ramble on so. Go check out Myeloma Youreloma!

Tags: Little Rock, Myeloma Youreloma, sean murray, support