Here are some revelations about my most current round: It has not been so bad. The doctors prepared me with anxiety medications and the thyroid dosage increase (which was never adjusted after it’s departure from my life) seems to be slowly helping with the energy increase. I also declined the neulasta which has seemed to cure the body aches. As well as drinking a ton of water to help with the migraines. I have a lot more energy and found myself doing some light housekeeping without getting too beat.
Physically, I think I look good. I bought some of them Harry’s shave club razors (highly recommended, btw) and completely took the stubble off my head. I look like a bald bad ass Buddhist warrior, with the scars to show. Haven’t gained weight, haven’t lost it, so I’ll take that as win.
So what happens next? I have 2 more days of Prednisone and then there will be an inevitable crash. On the 20th I get my blood counts checked to ensure that I don’t need any booster. This is necessary due to skipping my neulasta. I also must be a hobo and avoid opportunities that could cause me to get an infection. If all goes well then I’ll have my final chemo treatment on the 3rd, PET Scan and hopefully a clearance to return to work around the end of August. After that daily radiation treatments for an unspecified time. But there will again be some normalcy.
What I described is what I want to happen. I want to be back to work. I want to be able to get the treatment that I need. I want to be put in the position to pay my student loans, make my living, and continue to live a wonderful life with a wonderful job and live the life that I have the best way I can make it.
I know nothing in this world is guaranteed. The fact that I am still here is not guaranteed. I was born with a congenital heart valve, which they did not repair when I was young due to lack of technology and cost. This was insured by “cripple children” (what a way to have to describe yourself) and ended when I outgrew the program. At that point my heart was never covered until the ACA protected me from pre-existing conditions. In 2013 I had open heart surgery and had to get a pacemaker. In 1984, I got hit in the head with a metal fence post and had a brain injury which resulted in a seizure disorder. One that is greatly managed due to treatments from my injuries that will not be covered due to it being a pre-existing condition. In 1992, my mother died from cancer, her father before her died of cancer. I am what you call high risk for getting cancer(duh, since I’m going through cancer treatments now). My insurance, if I would have been able to get it due to aforementioned ailments, would most likely be inaffordably expensive or not covered treatments. Once I beat this, and it is coming soon, my insurance will be through the roof due to the lack of protections for those with pre-existing conditions and insurance will not required to cover essential health benefits, such as prescription, hospital, ambulance, birth control, and others. Also lifetime caps on insurance pay out will be put back on the table. Their proposal is to eliminate this to cover the cost that premiums have on people who are in a doughnut hole so to speak. Make too much money to get subsidies and are not rich enough to afford them. There are work arounds and compromises that can be made but this does not appear to be the goal. The goal is to show a win, a legislative victory. I do not count any method of using the sick and poor as political pawns as any form of victory. Fix the problems, don’t create new ones. It’s hard enough fighting to live, let alone fighting to live and trying to live a good life when dealt a horrendous hand. Again, I’m not speaking just about me, I’m speaking for those who cannot speak for themselves or do not but want to. Call your congressman. Tell them to hash through the problems as one country. Not as 52 senators vs. 48 senators in a plan that will impact everyone and will kill thousands.
Thank your for time,