Second Sunday in Advent

I now know why athletes use steroids. For the first three days of taking them I felt great! I had energy, the pain was significantly mitigated and the numbness, while ever present, did not have the accompanying ache that emerged full blown after the surgery. The dosage was not high and the time on them was a short six days. But I also recognize why the checkered reputation, the side effects are tricky. Redoubled fatigue. I slept 12 hours one day, and on the days when I slept less at night I took a nap later. Cold sweats and a patina of low spirits also made the transition a challenge. I can hardly imagine what the experience must be like for people who take very high doses, for example intravenously to arrest the inflammation of M.S. The hope that this dose would arrest the inflammation of my nerve has dimmed; the pain has returned and is constant. I have come to the conclusion that pain management must become a part of my recovery.

Trigeminal neuralgia is a debilitating disorder. I don't have it but I have learned a lot about it because it comes up on searches involving anything "trigeminal" very quickly, and because on the previous blog, The Schwannoma Experience, someone from the community of people who struggle with the disorder posted a thoughtful note and invitation to join their organization. I well might do so. I do not have the blinding, electric shock feeling but because the amyloid is choking off the nerve I have, as I have described, persistent, aching numbness with pain throughout the right side of face, mouth and head. Once isolated to numbness around my lips and chin, the numbness tingles and hurts now up my cheek, in my gums and cheek, around my nose, through my ear canal and increasingly around my eye. A test of my response to stimuli on left and right lashes last week at the doctor showed a markedly reduced response on the right. So in addition to pain management I very much need a knowledgeable doctor to provide an experiential prognosis so that I can prepare myself, my family, friends and colleagues.

In the meantime, here is what I have been doing. First, I have been trying to keep up with work that crosses my computer and attend some selected meetings by phone. Second, I am still involved in taking a number of medical tests. These tests are for the purpose of understanding what, if any, underlying disorders might have caused or be in conjunction with the amyloid. Third, this weekend I may have pushed the limits a bit. On Friday afternoon I drove to Rochester. Denise sang in the Eastman Chorus at the Eastman Theater and I could not miss the performance. We stayed overnight in Rochester so I could visit yesterday with two beloved, dear friends, Paul and Lauren.

Paul I have known since third grade. He is like a brother to me. Maybe that is why I am so proud of him: a coronal in the Army Reserves, since 9/11 he has been called in four times (an enormous sacrifice for his wife, two children, mother and his professional life as an attorney and businessman), including two tours in Afghanistan. Sadly, his mother passed away last week. She was a beautiful, brave and compassionate woman who stared cancer down four times and lived through the treatments and their awful side effects for the love of her family. She is one of the few people ever to ask to visit my brother, Peter, in a group home in Victor; we went together to see him about 5 years ago, and for that kindness alone I shall always remember her. She was a holy person, who modeled love as a gift to me and for everyone who knew her.

Lauren, and another friend Mary, and I met at the beginning of high school and we have been to each other all these years like family. Here's a sign of the depth of that friendship. Throughout this entire adventure, from the 18 months of unexplained symptoms and false diagnoses to initial actual diagnosis to surgery, and now to more pain, tests and uncertainty I, who gets choked up when watching a well-made heart string commercial, cried only once, a year ago, when in distress over the (false) diagnosis that I had had a stoke, I tipped over a cup of coffee accidentally on my computer, but not since ... until I saw Lauren. She is a nurse practitioner, and her partner is a doctor, and all she said to me when I walked in was something about knowing what I went through. If that is not the definition of family, someone with whom you feel comfortable enough to show vulnerability and express emotions, sometimes for better or worse, I do not what is. It was great to see her.

Last night Denise and I came back to her house in Penn Yan. Poor woman, Denise has been living out of a suitcase for so long now that all she wanted was to be in her home for awhile. Out the door at 8 this morning for a service in Rochester, she will come back later today and we will make dinner. For all that Denise has done for me, it seemed a small thing for me to honor her simple desire just to be home. Quite honestly, I am exhausted, and at 1 p.m. I am still sitting in bed as I type this message. I would have like to have gone to church this morning, here in Penn Yan, where Denise had been the rector, to see the many wonderful people in that community. I also miss the Advent hymns, Emmanuel especially. Advent, a time of anticipation. It goes with a dream I had the other day while napping, of being in my childhood neighborhood (which was by the airport in Rochester) and watching a plane descend rapidly, I fear it will crash, it comes down to the level of the street I am on, Westfield, flips over acrobatically and flies perfectly. With renewed energy, inspired by the plane, I start to run just for fun.