Riding The Wave – Multiple Myeloma

“Before I even knew what we would do, what the treatment would be, or it’s outcome, I had to get Dave’s head in the game!” – Lori Puente

There is a wonderful article over at The Myeloma Beacon, by Kevin Jones where he talks about the battle between him and his MM. It has garnered a great deal of discussion and comments. It was sent around also through the Myeloma ListServ (managed by Beth Morgan). And that resulted in some more wonderful back and forth amongst patients with MM that was refreshing and enlightening.

Not everyone thinks that your mindset has anything to do with your health, treatment, or outcome. I have written in the past about my take on it (see related posts). But there are those who do think it matters and certainly it makes the day to day battle and those lonely nights of scary thoughts, easier to manage and deal with.

I happen to think that it can make a difference. The body is a marvelous vessel. But the spirit and the mind are senior to it. We fight disease every day and WIN! They still regard blind studies with placebo the gold standard of testing new treatment theories. Those who get the placebo have good results. Why? It’s that unknown, unquantifiable thing that the medical community knows is there but its not their focus. I call it the extra fan on the field. I do that because Dave is a sports guy. He played sports in HS and for fun later on in life. He was a racquetball champion less than a year before he was diagnosed. He likes to play poker. He does Baseball and Football Fantasy with his friends and family. He coached soccer and baseball for our children and was a pitching coach in his spare time. I used every analogy I could think of to get his head in the game.

You know… when you are trying to get across a concept or idea to someone, you will often try to relate it to something they do understand and have affinity for to make your point.

It was in this effort I had to pull out all the stops for Dave to move from fear, defeat, resignation, to a place of hope and courage. We attacked it from every angle and we were not in denial about all the things that could happen, the statistics, the disease. But in that “could happen” part was hope. I began searching online for “survivors”. Those who had beat the statistics.

Like anything, I could find all the dour, bad news and focus on that – OR, I could find those nuggets buried, that seemed to overpower the statistics of high mortality. We chose to focus on the “medically insignificant” statistics as ones that would be personally significant to us. Fortunately, we came into Myelomaville at a time when some serious strides had been made to increase overall survival.

But that wasn’t enough. I said to Dave early on in his treatment that I felt his biggest challenge was going to be how to LIVE with cancer. He wasn’t sure he understood what I meant at first and then he got it. “Oh, yeah, right….” With checkups every six months, daily oral chemo and weekly infusions, how do you move on? That constant reminder that you have a disease that can kill you. But before it does, it will put you through hell and back – if you let it. Decisions may or may not need to be made at some point, but how do you LIVE in between where you are now and that point in the future, which is unknown?

To me, that was the more important challenge. I am happy that we have had a successful treatment and outcome thus far and that Dave is indeed in a good place and has learned to LIVE with his cancer in a way that makes me proud of him. I know its a challenge, it has been for us, but one well worth the effort.

I have a friend with MM that said to me early on in our developing friendship that he “hates the professional patient!”. I had to laugh. I get it. He didn’t go to a big facility and hadn’t met other MM patients in his journey. But he met enough cancer patients that he had developed this point of view. I took it to mean that he didn’t like hanging out or talking to people who were consumed by the disease, treatments, statistics. He is happy and productive as well as realistic. I understand.

Anyway, the article and discussion that occurred was heartening and one that I think we need more of. We can banter about the latest study, treatments, statistics, vitamins, herbs, etc., until we are glassy eyed and brain fried. But this stuff… we need to talk about it. We need to get to a place of resolve, hope, understanding, acceptance.

So many of you that have left comments, sent me emails about your feelings and beliefs, and have been truly inspiring to me. Your strength, courage, triumphs, set backs, fears, views, etc., have sustained me and given me hope at times when I faltered. Sometimes what you write is far more prophetic that what I may have said to get it started, and I thank you. You continue to make a difference.  

This just posted on my subscription on FB to Jack Canfield, Author of “Chicken Soup for the Soul” series. “Sometimes you are going to have to persist in the face of obstacles- unseen obstacles- that no amount of planning or forethought could have predicted. The going may be hard, requiring you to refuse to give up while you learn new lessons, develop new parts of yourself, and make difficult decisions. But it’s worth it.”

Tags: discussion, Head Game, Myeloma ListServ, The Myeloma Beacon