It is much easier to be inspirational when I'm not anemic. But, to be inspirational while anemic, that is a challenge. This morning I woke up at 6:00 a.m. and rode two hours in Metro Detroit traffic to the University of Toledo, which for those not familiar with Great Lakes geography is about thirty minutes south of Detroit in, you guessed it, Toledo. I hadn't really prepared since I had delivered the Captain of Your Own Medical Team talk earlier in Seattle and debuted it in Ann Arbor in November (you can find in my March postings). Then my hemoglobin was 11.00, slightly less than the 12 that I desire, but a long way from the 14-18 for the non kidney disease population. I despise dwelling on numbers, but for a dialysis patient they become a matter of life and death. I rather like to measure successful dialysis on what I'm able to do. And lately, that hasn't been much.
A couple weeks ago I suspected my hemoglobin had dropped from the 10.3 that it was in April. After I received the good deputamine stress echo, in response to the irregular echocardiogram, last week I though I was back in the saddle. I went to Hannah and worked on my core. Amazed again at my being able to bench forty pounds for three sets. Amazed that after four months it was so little. But just like Bill Murray's Bob Wiley, it is all about the baby steps. "Baby step to four o'clock. Baby step to four o'clock." After my forty minute work out, instead of being stoked, I laid down and napped. My suspicions grew stronger when the next day it was hard to crack a smile. Hard but not impossible. I strive to be jovial about life for my Jacob, Antonia and Andria. Earlier this week I found out my hemoglobin had dropped to 9.3.
With all this wonderfully warm weather, it has been difficult to look at my Mad River beached up against the fence. I can't comprehend lifting it on my car, a point of pride I made about a month ago in a post.
Tomorrow I embark on a solution. Two words, hemorrhoidectomy, ouch! There I said it, hemorrhoidectomy, a fancy word for butt surgery. Somewhere along the line I must have sat on a cold cement, or so Andria's Grandpa Herb warned us against doing, "don't sit on the cold cement, you'll get hemorrhoids." Crazy old man, I thought. He would never say I told you so, but I think he is giving me that cool Clint Eastwood smile of his from up above. Anyway, one colonoscopy and a couple of digital exams later (another wonderful euphemism), here I am waiting for tomorrow morning and the answer to a more energetic life. Andria asked me not to write about this, but like Katie Couric before me, someone has to put the behind in front. I am standing on Katie's shoulders as I say proudly, "I grinned and beared it and will be healthier for it."
On my way home from the University of Toledo I heared Dr. Ellen Langer interviewed on Hear and Now about her new book, Counterclockwise: Mindful Health and the Power of Possibility. Dr. Langer presents some powerful evidence that if we reconnect the mind with the body that the body can respond in dramatic ways. One experiment put very old men in a hotel designed to be as if it were the 1950s. A control group was asked to stay in the hotel room and act as if it were 2000's but the place looked like the 1950s. Another group was asked to live as if it were 1950. The later group's after photos showed them looking younger and their physical tests were much improved over the group that were living in the now. It is all about framing the information presented to the mind - mindfullness is what Dr. Langer calls it.
After my presentation this morning, a nurse practitioner came up to me and said, "I enjoyed your talk, but you are the exception. I have trouble getting my patients to even come to dialysis let alone do the things that you suggest." At the time I again thought, "baby steps." I told her that even the little bit of attention and support can sometimes plant the seeds of change in unsuspecting persons. But mostly I said, "I know, you are right." The typical dialysis patient has difficulties getting to her three times a week dialysis and the idea of being responsible for home dialysis is incomprehensible. But, at the same time, if a caring nurse had presented the options to me that I had to seek out on my own, I would have been home a lot sooner. It is a very difficult job working with the dialysis patient community. Sometimes it can be rewarding, but often it is frustrating. I think Dr. Langer's work could turn the delivery of dialysis on its head. I think we are framing the concept of dialysis so that the mind expects little benefit and the body responds to this expectation. I plan to buy her book and explore this in more detail. Perhaps after I reframe my mind over the fear of tomorrow's surgery.
Yes, I am afraid about tomorrow's surgery. I share this so that others may feel that it is o.k. to share this feeling. But my fear, while it delayed the exams, will not stop me from doing what I must to feel better. It would be too selfish to postpone it any longer. I owe it to Jacob and Antonia to be there. To be wholly there. My father wasn't. So for me the definition of being a good father is - "being there." And I mean this in a very active sense. I didn't let anemia keep me from going to T-Ball with Antonia tonight, nor going to see Jacob's artwork at the Restorative Justice show at Barnes and Noble, nor attending the 5th Grade Band Concert and watching Jacob out and front in the trombone featured, Trombo Mambo. I was taking photos as he demurely looked away. But, when I got back from Toledo at 2:00 today, I slept hard until Jacob woke me up when he got home from school at 4:15. My no napping streak had ended on Monday.
A few folks did come up to me and congratulate me on presenting an inspirational talk. I thanked them and was happy. When I was a professional consultant I use to joke that my eighty percent was as good as most competitor's one hundred percent. It was a way to convince myself that it was okay to be overextended on work obligations. Today I was able to reach down and present an 11 hemoglobin show, even though I was at 9.3. At some level, I still have it. I will take any day on the stage helping dialysis patients irregardless of anemia.
I'm certain that my next post will be celebrating life in the gym or out on the water. Well, maybe if I can find one of those inflatable donuts to sit on.
Dialyze for the Prize!
