Since my last post, I've made one more trip to Sloan Kettering in NYC. To be honest, I don't like how things are going right now.
The surgeon that I saw in early August doesn't really want to operate, and he's one of the more aggressive surgeons out there for liposarcoma. He will operate when others don't want to operate. He's the guy that people go to see when their local surgeon doesn't want to do any more surgery.
He sent me to a radiation oncologist instead. I was mostly disappointed in that visit, because it seemed that the radiation oncologist wasn't really prepared when I got there. It seemed like he was making stuff up while I was sitting there.
Essentially, he didn't want to do conventional radiation, because the beam of radiation would pass though a spot where my bowel has been re-constructed. He is worried that the radiation could burn a hole in the bowel, and because of prior radiation, it could be very difficult to get in there and do the surgery to repair the hole in the bowel if it occurred. It would be an emergency surgery, full of risks.
But, he did have an alternative idea - proton beam radiation. Proton beam radiation, unlike normal photon beams, can he halted at a particular depth. So, it was his reasoning that we could make the beam go far enough to reach two tumors, but not go so far that it would damage my bowel. Of course, he said there were still risks, but he thought that this was the way to go.
He also warned me that proton beam radiation is very expensive and insurance companies tend to fight it as a treatment option. While I was still at the hospital, he talked briefly to the surgeon and they agreed to take my case to their tumor board to discuss options. This was on 8/22. Then, for weeks, I heard nothing. I thought that perhaps they were fighting my insurance company. I finally heard from my surgeon on 9/14. They had finally agreed to a plan.
I have four total tumors right now. One of them could easily be operated on. The other 3 are not great candidates for surgery. So, the plan is to attack those 3 tumors with proton beam radiation and then enroll me in a clinical trial to try an immunotherapy drug to target the 4th tumor after radiation.
They are allegedly working on the insurance approval right now.
I checked my insurance company's web site yesterday, and found nothing about the pre-approval for the radiation. Perhaps they don't list items until a decision has been made, but it just seems to be taking forever.
While this process drags on, three things have been occurring. First, the pain I'm dealing with is getting worse. We increased my oxycodone prescription a couple months ago, and the next time I need to increase the dose, I need to see a pain specialist rather than my primary care doc. I'm at the limit that VT law allows my PCP to prescribe. The next step is likely to be something like a morphine pump, something I've been hoping to avoid.
I'm also dealing with increasing fatigue. I am napping all of the time. I fall asleep in the car on the way to work. I fall asleep on the way home. I fall asleep on the couch as soon as I get home.
Yesterday was all of those things. I slept on the way to work and on the way home. We skipped the gym on squat day, a day that I hate to miss, because I was so tired. As soon as I got home, I fell asleep on the couch. I woke up about 8:00 and ate a sandwich for dinner. And then, I fell asleep again. At 10:00, my wife woke me up to go to bed. And, at 6:45 this morning, having seemingly slept for most of the past 24 hours, I could barely drag myself out of bed.
Lastly, I have zero appetite. I never eat breakfast. I rarely eat lunch, or I eat something very small for lunch. On the weekends, I never bother to eat breakfast or lunch. And then at dinner, even with the medical marijuana, I still don't feel hungry. My weight is gradually decreasing. I think it's been my fairly regular attendance at the gym that's been stopping it from dropping faster, but if the fatigue starts to mess with my gym attendance, I'm afraid that my weight will plummet. I'm certainly not skinny. But, to be honest, I don't want to lose any weight right now. I need to keep as much muscle mass on my body as possible, to be ready to handle the rigors of radiation and immunotherapy.
For the first time since this ordeal started about 3.5 years ago, I feel like I'm starting to fall behind. Previously, it felt like we always had answers, another treatment option, I had the gym and my training to focus on, and I had a focus for taking on this disease. Right now, it feels like I'm starting to lose some of that.
I'm also somewhat depressed by something my employer did to me recently. I will admit that during my last chemo, I was far from 100%. I tried hard to keep up, to do a good job, and I was even working up to 60 hours per week during chemo. But, it wasn't good enough for my employer.
The Friday before Labor Day, my employer presented me with an "offer". Basically, they were planning to demote me for poor performance, to decrease my salary by 35%, and they asked me to sign a form that admitted I was incompetent at my job.
I spent the weekend trying to chase down an attorney to see what my options were. What I discovered is that despite my cancer, at-will employment seems to trump the ADA and EEOC laws, and I really had no means to avoid the situation. Two attorneys suggested that I not sign the form, but I was told that they could impose the job and salary on me at will. So, I did refuse to sign the form, and the company imposed the new job and new salary on me. So, now my wife and I are staring at bankruptcy on top of everything else that is going on.
If they had fired me, I would have been eligible for unemployment, I would have filed for bankruptcy immediately, and I would have started the waiting period to collect social security disability insurance. Instead, they left me with some income, but not enough. So now, we will struggle for 3-12 months (it's hard to predict how long we can hold out) and then we will have to file for bankruptcy.
Another hope that I was holding onto was that I'd be able to go onto disability insurance when I'd reached the one year mark at work. That insurance basically pays 2/3 of your salary. At my old salary, again, we could have gotten by for a while on that level of income. But, 2/3 of my new salary is now less than half of my old salary, and while we may still take that option, it would again mean bankruptcy.
All in all, I think we've held up pretty well for the past 3.5 years. If you count my prostate cancer before that and the rare form of melanoma that my wife had, it's been five years of dealing with cancer. But, we are now approaching the point where we are not going to be able to make it on our own any more.
My daughter is currently doing a semester in Spain. She sent me a WhatsApp message last night, asking if my wife and I might be interested in meeting her in Spain for a long weekend in Bilbao. We would love to do that, but it's simply not possible given this turn of events. I was almost in tears as I read her invitation and thought about how impossible it was.
Oh yeah, two different attorneys have looked at what my employer has done to me. Both of them described it as the most unethical thing that they've ever seen an employer do. At the same time, they said that it appeared to be completely legal.
What kind of system do we have in this country where someone's life can just be destroyed because you were unlucky enough to contract a rare cancer? I know I'm not alone in this situation, but for a while, it seemed like we'd be OK.
Now, I'm left wondering if we are going to be able to afford to eat, or to even feed our pets.
Please don't feel sorry for me. I've had a great life. I have an amazing family and support system. I'll get through this somehow. I'm sure that many others have been put in worse situations than mine.
But, it's certainly not how I expected that the final years of my life would go down.
