Sunday, September 3, 2017

Riding on bike path, waiting for a doctor

Back in the day when I biked around Prince Edward Island with Anne and around Nova Scotia with Katryn and went 80 miles a day around Civil War battlefields with Rook, a 12-mile bike ride was a hiccup.

But that was then and this is now, when I have ridden only on bike baths since my accident several years ago, and when doing so, have not gone very far. 

This summer I barely got my bike out of the garage, with tennis and a little running having taken precedence.

Last week, however, I put my bike in the back of my car (probably the hardest part of the endeavor) and got onto Norwottuck Rail Trail  behind Walmart and rode to the end and back. 

I had done part of this ride about a week before and wanted to try the road in preparation for an upcoming 17-mile-charity ride that a friend mentioned for us a way to ride for a cause and get our bikes out of the garage.

It took only one call to a friend to convince me to stay on the bike path. The friends and family who watch me say that's what I need to do (especially Joe who said I was not allowed on the road after he picked me up at the hospital after I fell off my bike and grazed my head on a passing car when riding on the road with a friend). So I rode to the end and back for a total of 12 miles. It is mostly flat with enough small inclines to give me a chance to switch gears, but nothing challenging.

The feeling of flying, even at my slowish speed, and the wind on my face, reminded me of why I used to like biking so much. And the twilight view of the mountains was spectacular.

The couple of days after that were not so restful. Tuesday and Wednesday were especially draining; Margaret, when she picked me up at Dana-Farber after my neurology appointment on Tuesday, could tell from the way I was practically whispering that I was low on energy.

There is something about waiting for a doctor's appointment that can take a lot out of you.

Tuesday started out on a low note when I went to drop Maddie off at Jim and Jane's on my way to tennis. My plan called for starting out with tennis to get me on the right footing for two days of appointments, then going home and getting picked up at 12:30 for my 2:30 appointment with a neurologist, then sleeping over at Margaret and Nick's and going back for ECP (the light treatment on my blood) Wednesday.

Jane called my landline, which I don't always check, and left a message in which she said that they would not be home at the usual time. So when I got to their empty house with Maddie it was too late to turn back, drop her home and go to tennis. 

This didn't leave me much time to do much more than a few things around the house. Not a big deal in the scheme of things, but it was going to be my only exercise that day, so I had been counting on it.

I already know I have neuropathy caused by chemotherapy (chemotherapy-induced peripheral neuropathy) but have never actually seen a neurologist to confirm it. Dr. Alyea had prescribed gabapentin, one of a variety of drugs used to tamp down the symptoms, and although it takes the edge off, I always have some amount of numbness, burning and tingling.

The idea for seeing a neurologist came about when I mentioned that I had written a story about what a pain it is to have and treat neuropathy. 

I got to Dana-Farber on time Tuesday. And waited two hours.

In my story, I wrote about the problem with the medicines now prescribed for neuropathy: The more you take, the better chance you have for symptom relief...and the greater the side effects.

The doctor told me to take more of the same. She also did not like the fact that I'm on another similar drug.

A local doctor had prescribed drug #2 for another purpose, apparently without knowing that it is also used for neuropathy. 

The neurologist said I should get off the other one but not without guidance from the prescribing doctor about titrating down.

I left a message and haven't heard back, so I'm stuck on the two drugs. I haven't experienced any new problems, but I would like to get off asap before I have something else to worry about.

No comments: