We are walking the knife edge.
Jim had his first seizure free day yesterday in about 2 months. He also slept all morning, staggered around the house when he finally did wake up, and slept from 8 pm to 7 am this morning….and still feels tired.
Because the seizures were getting worse, even with the increase in steroid, the hospice team decided to add benzodiazepines to his seizure control regime. Ativan, Klonopin and Valium are trade names for these kinds of drugs. Ativan is the first line and the shortest lasting, valium is usually the last as it’s effects can go on for 72 hours. Klonopin lies somewhere in between. Jim was taking some ativan to reduce the insomnia prevalent with steroids, and it wasn’t touching the seizures. So, change to Klonopin.
Monday night was the first dose, he slept just fine. Tuesday am was the second…and he slept and slept and slept and slept. He slept through a mountain bike date. He slept through 3 people coming to the door and yakking in the kitchen. Once awake, he did not know what day it was. I called the hospice nurse….today we are going with 1/4 the dose in the am. He may still sleep some more this morning. He made his rescheduled mountain bike date for the afternoon. We will see how his energy is. We will see if the lower dose controls the seizures. If it does, I may reduce the night time dose, too.
It’s a knife edge. Jim may not be able to be seizure free AND have enough energy to ride his bike. Right now his preference is to lean to the side of being able to ride. I’m scrambling to adjust meds to allow that to happen. I hope I get it right.
I work with children with developmental delays. They all make progress, they all learn. It is always hard to tease out what I have had an effect on from what the child would have learned anyway from just the miracle that is development. It is the greatest gift of my work to be able to stand by and witness that miracle.
With a progressive disease like brain cancer, Jim will deteriorate no matter what I do or do not do. It is hard to tease out what is drug effect and what is just the natural progression of the disease. It is the greatest gift of my life to be able to stand by and bear witness and bring comfort to a life well lived.
On to another day….
I have a cold. Upper respiratory infections are generally not terminal, and they are an assured occupational hazard for me. I usually get one every Fall, and they run a very predictable course. Start with low energy, then a sore throat. A day later my head fills up with snot. At this point, if I exercise, I can push it deep into my chest where it will linger for days or weeks. If I resist the drive to run or swim, I can often kick the virus out. I’m writing this instead of swimming this morning. We’ll see if I have been successful.
Greg and I spent the weekend cutting and gathering firewood. Limbing trees, cutting downed hardwood, piling brush, throwing logs, placing them in a trailer, hauling the wood out and dumping it at the trailhead is hard physical work. We are both a little sore this morning, but agree that our respective weekly exercise regimes allow us to do this kind of weekend work without getting injured. Neither Greg nor I is 20 something anymore. Awareness of aging permeates the work we do, the plans we make, the gratitude we have for each other at this stage of our lives.
Colds are not generally deadly. My immune system will kick in and I know I will feel better soon. Life itself is a terminal condition. No matter how well I take of myself, I cannot escape aging and ultimately death. And yet, at this point in my life, to experience and witness the development of a new partnership, friendship, love. How lucky am I?