J. Michael Jones

I am a data-driven person, as is my doctor. I’m glad she is because statistics don’t lie . . .  ever. With that said, I have a growing conviction that hope makes a difference in outcome. You may say, “Duh.” But scientifically, it is not so clear, mostly because there hasn’t been a lot of good research on the topic. Here is one article about it, but it only deals with the influence of hope and optimism on one’s psychological outcome, not so much the physical outcome.

I think the body has an intuition if it is living or dying. But I think we have a conscious influence on that intuition by the way that we live. One, such as myself, who has a potential of dying relatively soon, could focus on that, give up, and mope. I think of moping is sitting on the couch and just staring out the window. Feeling sorry for one’s self–as I have at times–is not helpful.

But someone with hope, who knows the odds, but still sees the path out, can fair better. If they live as there will be a tomorrow, exercising, getting out-of-doors, and planning future trips and projects, I think they have a better chance.

After spending years as a provider, and now a patient, I am appalled about the lack of hope woven into our health care system. Many times I’ve had providers tell me how serious my condition is, but not mention that there is pathway out. Why do they keep telling me this? I want to give that more thought but I think, yet I’m not sure, it is because they do not want the patient to be disappointed if they do not do well, and blame them. I was happy to hear my new Multiple Myeloma doctor say that she has seen about 20% of patients cured by stem-cell transplant. The word “cure” is taboo in Multiple Myeloma circles, because officially there is no cure.

On a side note, tomorrow I start collecting my urine for a 24-hour creatinine clearance test for the nephrologist at the University of Washington. I have not done one of these tests since January. It is a more reliable test for determining renal function. I know that my kidneys have had the hell beat out of them, but there is a slight chance, that if this test surprised us all, I could get off dialysis. I hate dialysis. I hate it because it makes me feel terrible for that day. I hate it because it will make a stem cell transplant more dangerous and complicated. I hate it because I have to have this catheter in my chest, which is always uncomfortable. It makes it hard to fly-fish. It makes it hard to work on my car. It makes it hard to chop down trees. But most of all, I hate being in the dialysis-center system. I have not had a good experience with the company I am working with. The technicians who hook me up are very nice. But the system is wanting. They have no clue what my diagnosis is. They argue with me about my orders. Now, they are fighting with me about going to Seattle for my treatment, stating that they may never let me come back. This is crazy! There are days that I think the administration of that system wants me to die so that I would free up another chair.  So, I want to get out of that circus as fast as I can, one way or the other.

But, back to the topic of hope. Again, I have yet to find any studies to support the idea that hope can make a difference. However, until the studies are done, I will live like this is reality, as I think it is true.