Saturday, September 8, 2012

Day 84 - Fox Point Five Miles

This morning Terry and I visited Beach Pea and his studio. The kiln had been fired yesterday and was still over 200 degrees. We hung out for a while, drank coffee and headed home. Around lunchtime, Tommie arrived from the cape and I invited Kate over for a study break. She proved to be both Maggie and Kita's favorite person ever, but they left her alone long enough to eat lunch with us.

Tommie and my next activity was to take Ellie to every shoe shop in the SeaCoast looking for the ideal birthday boots for an eleven year old. We finally found them at the closest shoe shop to our house, Bootleggers, which we had not even considered until we were desperate. Next year, we'll start there. The good news is that I was able to get chocolate in Portsmouth from where else? to take up for the nurses at the end of the week when I do chemojail.

For our capstone of the day, Tommie and I did the Fox Point 5 mile road race. It is a beautiful and very fun race in Newington which we walked. Our pace was about 16 and a half minute miles, but that is ok when I think about a hemoglobin of 10.5 and a VAD two days ago. I am a little tired now, but not badly. I think I may be a bit stiff in the morning, but that is why they make tylenol. Fox Point is one of the nicest of the Sea Coast Road Race Series races and the first year was for sure my favorite. Now, it's tied with the Market Day Race for my favorite.

If you are a runner or walker at all, consider doing the Road Race Series. It's good fun and keeps one motivated through the whole summer. I have gotten two jackets in previous years and loved wearing them, but this one (which I am on target to get), will be very special. The next races are both 5K's and the first one in early October should be at a time when I'm feeling fairly decent, but I'm a little worried about the second one which will be a few days after likely chemo jail #3. However, it's only 5K and there is no rule against using a wheelchair so Tommie says she'll push me if need be. Also, the worst time is not the first few days I'm home, but a few days after that. We'll see. I may need to be wheeled to my jacket.

For those of you who read every day, you may remember that I wanted to talk a little bit about bone marrow biopsies (BMB). I have now had four, two of which were painful and two of which were not. Even the ones without pain were uncomfortable and unpleasant, but they completely lacked the electric, roving, must-be-attended-to feeling that the ones with pain featured. The difference (I've been told) is the speed that things are put into and taken out of the marrow space. Evidently it does not like its pressure changed one bit. Of course, no one wants to gratuitously hurt their patient, so you would think that everybody would be really excited to learn which steps need to be done slowly to avoid pain. You might think that slowly the non-painful type of BMB would take over and replace the painful BMB as people noticed how much nicer it was for patients to miss out on the special pain of a BMB. You'd think wrong.

I have a clinic patient who has probably had two dozen BMBs (treated in Boston). She tells me that they all hurt and that they are mostly done by trainees. Now that I have learned that a BMB does not have to hurt, I cannot believe that she has been subjected to that sensation over and over and over again, every time gratuitous. I am not sure why the better innovation has not spread; that it takes more time seems possible, but really five minutes on a thirty minute procedure? Give me a break. It is possible that those who are doing more painful BMBs don't know that there is a better way. I would believe this if it was only older docs whose BMBs were painful, but my patient's and my experience with painful fellow BMBs makes this more doubtful. Or, if it is the case, why don't they know? Why has an innovation (evidently) that makes a painful procedure merely unpleasant not widely known about? Can it be that the people doing BMBs care so little for patient comfort that they have not noticed? Certainly, if anyone does a BMB on me that is painful again, they will be educated fully on the importance of not changing the pressure in the marrow space quickly. Maybe other patients just figure that some marrows hurt and some don't and there's nothing the practitioner can do to make it better? When they mention to the person whose marrow hurt that it hurt, everyone thinks it's the luck of the draw so there is nothing to be learned here. It's all very discouraging. Not only do I not want pain with BMBs, I want painful BMBs to stop for everyone. (disclaimer: when I say I had two BMBs without pain, I really mean NO pain. I'm sure it's not completely possible, even with perfect technique to always do painless BMBs, but I am equally sure that it is possible with better technique to do far more painless BMBs. Also, the unpleasant part, the lidocaine injections, don't have a painless replacement at this point.)

The "why do people use less than perfect technique for BMBs and cause unnecessary pain" question is reminiscent of why do people neglect to wash their hands and cause unnecessary infections question. I think health care facilities have done a remarkable job at changing the culture around hand washing and we're in the midst of a culture change about treating pain. Next, perhaps, a culture change about causing pain.

I wish I understood why a simple change to a procedure that eliminates its pain is not more widespread. I hope I can figure out why and help it spread further. Even better, I hope it gets spread more widely, quickly. I hope the innovations that would make your life easier are known to you or revealed soon.

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