Last Thursday, just before I left my office for my chemo treatment, I got a call from ProCure in New Jersey. ProCure is the proton beam therapy center that Sloan Kettering wanted me to go to for proton beam radiation. They were calling me to tell me that my insurance had finally approved the treatment. I've since gotten a letter from my insurance company outlining the approval. They consider the treatment to be experimental, but they've approved me for a one-time-only treatment.
But, since we decided to pursue this therapy in August, my tumors have continued to grow and I have a new CT scan. So, I contacted my doctors at Sloan Kettering to be sure that they still want me to pursue this option. A week later, they still haven't decided. I know that part of that time, they were waiting to receive my CT scans on a CD. I'm dumbfounded that they still use US mail and CDs to exchange this information. Doing that kind of healthcare information exchange is what I do for a living. Yet, a major teaching hospital and one of the top cancer centers in the world still rely on US mail to exchange results.
Hopefully, I'll have an answer in a few days time. If they still want me to pursue this option, we will have to decide whether to also continue chemo or if I should take a break from one while doing the other. Basically, I would need to do a short trip to NJ so they could do measurements and get me set up for the treatments. They would do a full body mold that would hold me in place during the treatments, and they would then use some sort of imaging to direct the beams during the treatment so that it gets to the precise location they want to be targeted.
Then, 2 weeks after the initial visit, I would return for an 8 day stay, and I would receive 6 treatments over those 8 days. I would be able to work remotely from NJ while I needed to be there, so that should minimize the impact at work. My wife would need to go with me (a vacation in New Jersey - how exciting!), and we are hopeful that she could work remotely as well.
My biggest concern is leaving the dogs at home with my son for the time we were gone. That's a lot to ask of him, but he has said that he thinks he could take care of them while we were out of town.
It would be the longest period of time we'd ever left a child at home alone. He is a full grown adult, so I hope he can handle it, but I still worry. It's a parent's prerogative to worry about these things.
I'm hopeful that if radiation was successful that I might get back into the gym after treatments, but I'm thinking too far ahead there. I need to get the treatments first, and then worry about the post-treatment issues.
My wife suggested this week that we should consider getting a reclining chair at home. I spend so much time in the living room these days, uncomfortable on our couches, that she thought a recliner might be good for me. I do spend a lot of my time at home just resting these days, so maybe it makes sense. But, it also has me screaming "grandpa" inside my brain. Aren't recliners for old people? I remember my grandfather spending his later years in his recliner at home. He had it positioned so that he had the best view of the TV in the house, and after dinner, he could always be found in his recliner, commanding the remote control. How did I get so old and frail?
But, it probably makes some sense, so we are going to do some shopping this weekend and see what we find.
Lastly, I tried to resign from Sugarbush this week. After 18 years, I just don't think that I can pull it off anymore. I explained that I didn't think that I could work enough and that I thought I'd be a burden rather than an asset. But, my boss and the ski school director had already discussed this possibility, and they declined my resignation. They are going to let me work as little or as much as I can handle, and I'll get to keep my ski pass. I am guessing my wife will keep her pass as well. I'm grateful for the offer that they've extended to me. It will allow me to stay involved in the ski school without much of a commitment. I'll work the busiest days of the season, no more than one day per weekend, and I should still be able to get enough rest (in my new recliner) so that I'm good for the work week. It's all a matter of finding balance these days.
I'll post an update here as soon as the doctors decide on the next treatment steps.
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