Updated: Mar 8

February 27.

My brain surgery went really well and I had the use of my left side right afterwards. The only incident I recall was that I have a very sensitive skull and I fainted when a nurse was getting ready to take the stitches out. Because I was recovering from brain surgery, they made me go back to the U of U Medical Center, to the emergency room, to get them taken out. I had to negotiate with the doctor there to give me something for anti-anxiety to put me out while they took them out. There was a scar left on my head. They had to shave that area for the surgery. When I saw that area it upset me some, but Ruth brought me a number of headbands to cover it up ( that was before I lost all my hair because of the chemo).

I do remember a few years ago I bought a beach house in Gulf Shores Alabama. In 2020 we had a level five, slow-moving hurricane and I couldn't reach the person that usually boarded up my house. So we had about five hours of hurricane force winds and rain. My little house did pretty well especially when others around it were completely destroyed. In time even the small repairs I needed were adding up so I decided to file a claim with my insurance. I remembered them saying "if you are prepared, you shall not fear." But I wasn't sure that I had done everything I could to be prepared because the house was not boarded up. But I called my insurance agent and he said, "I was wondering why I haven't heard from you". He asked about the windows and I said they're all new windows. The siding? I said I just replaced it with a new hardy board siding and then he said "how did your roof do?" I said "Well, when I got my new roof I did a metal roof so its fine." His comment then was, "you did everything right. Most people just work on what looks good, such as decorations etc. but you focused on structural items." I was glad I had.

I felt the same way after my finances with the stroke because I made a lot of money over my career. I have tried to be careful over my lifetime, but maybe I could've done better. My care right now is expensive. I also remember thinking and making a decision right after my stroke, right after my seizure, I decided the only way to get through this is to go back to the foundation. Several times over the years, my prayers were always, "its just you and me again Lord", but he's always been there. I recovered quite well from the brain surgery and I took the first two chemotherapy treatments, but in between those two treatments, I started losing the ability on my left side. It was gradual, and no one seemed to know what to do about it. I was going to Physical Therapy, Occupational Therapy, and Speech Therapy 2 to 3 times a week, but no one said I should go back to see my doctors.

I finally went to my first follow up with my neurologist on March 1st. I had walked into her office a month before, but by now I was in a wheel chair with my whole left side completely flaccid. My neurologist checked me right back into the hospital. For two weeks I was on the Neuro Unit where they were checking me closely. No one knew it was getting worse. I had intravenous chemo treatments then and plasmapheresis where they cleaned my blood, but it continued to get worse. It felt like a nightmare. Obviously the vasculitis was still progressing. After a few weeks, they had done all the treatments there that they could do, so then I was moved to the Rehab hospital where I was able to start Physical and Occupational Therapy again but now on an intense daily basis. I continued to with daily chemotherapy to try to get the Vasculitis into remission. I had gradually lost all function on my left side. I wish someone had warned me that this was a possibility, but I guessed no one knew to expect it to happen that way. My sister was trying to get an appointment to see a "Vasculitis Specialist," but for some reason they couldn't do that while I was an "in-patient" there. We finally did get to see a specialist by the end of April. I wish someone would have told me to be on the look out so I would've let them know sooner when I was getting worse, but I really don't know if they could've done anything more about it than they did. Then it took another two months of daily chemo before it started to stop progressing and became stable. By then I had lost all my hair and was pretty weak from that and from the high doses of daily steroids I was taking.

To Be Continued.....


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