It would be easy to describe last Tuesday as the worst day in my life up until this point. Not only did the election go in a direction that I still find unimaginable, but I found out that my liposarcoma has returned.
I don't want this to be a political post, but my biggest fear about the election was tied directly to the ACA. While the ACA hasn't really been affordable for me (we have spent over $30K on premiums plus out of pocket expenses in 2 of the last 4 years), I have taken solace in the fact the people who couldn't get insurance before were getting it now. My insurance company doesn't want to cover me (two primary cancers in the past 3 years) and they don't want to cover my wife (another primary cancer in between my two diagnoses) and they most likely don't want to cover my children, who are both 18+.
To get the care that I need for a very rare cancer, I am doing most of my treatment at Sloan Kettering in NYC. While this is expensive for me - lots of travel expenses - I have access to docs there who truly understand the cancer I'm dealing with now. If I could only go to hospitals here in VT, I'd have little hope of a positive outcome. It's not that they are bad docs, but rather that my diagnosis is so rare and so dangerous that I need true specialists in this disease, and that's not what I have here in VT.
So, if the ACA is repealed completely and not replaced, I'm likely a dead man. If the pre-existing conditions clause is not maintained, I'm a dead man. So, I had a very vested interest in the outcome of the election.
Regretfully, my new tumor is at a tough spot - behind the liver, near the spine, near the diaphragm, and possibly entwined with the inferior vena cava. This would be very difficult to simply cut out, so my surgeon wants me to do a week of high dose radiation, wait six weeks, and then have surgery. He said it's still a significant surgery, but if no other lesions show up, hopefully, I will have a smaller incision and easier recovery than the last 2 times.
It also means that for the 3rd time in 4 years, my ski season will be interrupted, and I will be unable to perform my normal job as an instructor. I will still ski and teach, but I'll simply have to fit in as many days as possible.
Most likely, I'll be in NY for a radiation simulation next week. Then, radiation the week of 12/5. Then, a break for 6 weeks or so. Another CT scan. And then, most likely, another surgery in late January.
It's a tough blow. It probably means that any modest hopes I had for a cure are now gone. Maybe, but it's just not very likely. The surgeon is confident that we can still achieve some sort of longer-term remission, but I'm skeptical. This does happen for some people, but not for others.
My biggest concern, to be honest, is how each round of treatment just chips away at me, both physically and mentally. Each round creates a few more permanent side effects. Each round shakes me up mentally. And, for me, each round gets tougher to take. In the past 3 years, I've now had a major biopsy, laparoscopic surgery, major surgery, 4 rounds of inpatient chemo, another major surgery, and I'm now looking at a week of radiation and then another surgery. Mentally, I simply feel beaten down. I've talked about just skipping the treatments, although I do know very well what that would mean.
So, for now, I'd say I'm down, but I'm not out. I will fight on.