Since my last post, I have been making regular trips to Orlando for photopheresis. Last week this provided an extra hiccup for me when my air conditioner went out on my car, just in time for the warmest days we’ve experienced recently. I was able to figure out that large leak in the condenser was the culprit, so between anxiety surrounding money and bills, and the will to have as many accomplishments as I possibly can, I was determined to fix it myself. I am proud to say that as of now, after fighting some poorly maintained rented equipment and other small frustrations, I have air conditioning again. My drive to Orlando in cool, cloudy weather tomorrow should be nice.
Over the past week,
I have had a few more communications with Cedars-Sinai Hospital in Los Angeles. The biggest news is that the doctor has approved me to be seen for an evaluation. It is a step in the right direction but feels like they are small hurdles spaced far apart in a race that should be run like a sprint. I am still waiting to hear from the financial/insurance coordinator who was supposed to be one of the first people to contact last week, but I have heard from the social worker. The main concern she focused on was the challenge of housing in Los Angeles. Should all of this happen, I will need to live in Southern California while I wait for the transplant and for 3 months to a year after, depending on what the recovery looks like. The added challenge to all of this is the uncertainty of how long everything will take; waiting on a transplant list can be days, weeks, months and for some years.
On one of the nicest days, we took a couple of our dogs to Big Talbot State Park, northeast of Jacksonville. We got to enjoy a short hike with the dogs to the shoreline, which opens up to a beach with “driftwood” and black rocks. After we left the park we decided that we would look for a dog-friendly place to eat and realized that Amelia Island was only a few miles away. So, we ended up driving to 
Fernandina Beach. Along the way, we were commenting on how many exotic and antique cars were on the road, it turned out that the Amelia Concours D’Elegance had just finished. We finished out the trip with lunch in Fernandina Beach and a walk around the city. The dogs were even invited into an art studio where they learned a lot about some interesting techniques used by various artists.
On a much heavier note, I recently found out of a house bill (HB284) that has gained traction in my home state of Montana, that would take away rights of terminally ill patients to end their suffering. As someone who has faced what could be the end multiple times, have felt exactly what “life” support feels like, and have been dealing with a terminal illness knowingly for nearly 4 years, I now, more than ever, advocate for a dignified way to die. This bill would make it a capital crime for a doctor to write a prescription which a terminal patient may take themselves to end their life. As I think about how this may look for someone as myself sometime in the future, I think about how things have felt in the past. There have been multiple times in which I have been in and out of sedation, with a breathing tube in, with a breathing tube partially in and with a breathing tube out, in which it should have been in, choking to death and slowing dying in my own fluid. In many cases that people are faced with ways to die in states without laws protecting physicians from a planned death, the ventilator is unplugged. From my experience, this is the definition of hell and I don’t want my last moments to be hell on this planet, because those moments can feel like an eternity when you add sedation medications, believe me. You have probably swallowed wrong at some point. It doesn’t feel good, but that is a tiny fraction of what it feels like to be gasping for air when you truly need it. It. Is. Unrelenting. Torture.
Life and death is not a topic I take lightly, I have fought harder for life than I ever have, I have appreciated every moment of it more and will continue to fight for it more every step of the way. I believe virtually all terminally ill patients reach some level of this realization and elevated appreciation for life when faced with death. That is one more reason that I believe that the misconception that a terminally ill patient wouldn’t give all they can to their life and then prematurely leave their life when there is still hope is ludicrous. These are people who have gone through tremendous pain, through very unusual procedures that tear apart a natural body, and suffered immensely just to see another day. The least that we can do is utilize the same technology used to keep patients alive to give them a comfortable exit.
I know that people who oppose me on this will say that I don’t live there anymore, and I would say that with my ever changing situation I like to keep all options open and that this is a medical right for patients everywhere. The following are links in ways that you can take action:
If you are in Montana:
RSVP for Senate Hearing of HB 284
Outside of Montana:
Hi, Brandon. Your story about the air conditioner sparked a memory of your dad and me working on one of his vehicles (the Scout, I think! ) and we ran into an unexpected problem! Before we were done, it was dark, and we had both remembered all the swear words we learned the Navy that we thought we’d forgotten. Of course, we laughed a lot, too, which is something we did often when we worked together.
I want you to know I respect you immensely for how you’re handling your current situation and that I’ve always thought that people should have more end-of-life choices. I wish you the best and I hope you’ll let me know how I might help you.
You state the end of life case so well. Why do we deny the people we love something we would do for the dog or cat we love?