The start of day two, yesterday I felt so exhausted, slept off and on all day long, took things extremely slow. I felt as though I was moving in slow motion all day long, the simple act of walking felt like I was moving like Jamie from Bionic woman when they were showing her running to rescue some kid from a burning building. My senses were all off, I couldn’t form thoughts, I couldn’t even remember who I was. How pathetic?
I woke up around 6 AM feeling a bit refreshed, considering. My senses are still off. The only difference is I don’t feel like I could sleep the day away and I don’t feel like I am moving in slow motion. Myron came around 7 AM and he will be back around 12:30 and we are going to get my apartment clean and organized. I cannot function in chaos and my apartment and life feels like it is in chaos.
It all started with the surgery on Wednesday October 24th, and the fact that I have to be back in a regular trach due to the fact my throat has granulations caused from inflammation due to whatever my body is doing. My Rheumatologist and ENT both were worried about me and wondered what the heck is going on to cause me my breathing issues. The point I am trying to say and it is not coming out as eloquent as I want it to be. Is the fact we still do not know what it is I have? Turns out it is no WG or Vasculitis disease as they thought. It is an auto immune disease, they are thinking it is something called IgG4 a rare form of Lupus. They took a big biopsy of it so that they can test it for that, but that takes weeks to get back. I am hoping when I go in to see the Rheumatologist at the end of November that mystery will be solved. All I can say is while in the hospital my emotions were raging with self-pity, anger, self-loathing, and why me syndrome. I am going to say this, the hospital is not the place for processing emotions, making decisions, or even evaluating what my battle plan will be. Thankfully, I brought my journal with me, I had my lap top and music to distract me from wanting to scream and punch everything in sight. And I am better today than I was those first few days of dealing with the rejection of my body. My body is literally rejecting me. That causes me distress.
It was not all bad news, it just felt that way. Feelings are not a catalyst of what reality is. When the ENT and the Rheumatologist went into a meeting together to come up with a battle plan to help me, I am blessed with an amazing team. The plan: they gave me a three day high dose of Solumdrol infusions. Solumderol is a steroid. Steroids help reduce inflammation and if the Solumderol treatment reduced the inflammation down in my throat by my surgery Monday afternoon then that would mean I am ready to have the chemo treatment of Ritaximab in order to get my body back into balance and so that I can have a life. My team, family, friends, all prayed that it would work. Guess what, it did. I noticed it. What I noticed after the second day of the infusion was my legs, arms, hands, fingers, wrists were skinny. I did not feel like a bloated piece of skin. I was hopeful. I also was talking stronger in, even with a cuffed trach, which surprised my ENT and he even made that comment to me on several occasions when he came in. Monday’s surgery was a success. My throats inflammation was down. I am hopeful again, progress is being made. Carri sat with me for my first infusion of Ritaxmab on Tuesday night, was not fun. I wrote a post about it. Hard to comprehend what it feels like, but my thoughts are about my dad and his chemo treatments for his cancer and the radiation he had to go through in order to fight for him. The things I think about while being sick would amaze you. You go deeper inside of yourself. You don’t have a shallow view of life, things that seem important do not seem that important anymore. What is important is relationship and the superficial stuff does not seem that impressive anymore.
My plan now, I am going to my primary doctor and getting the chemo infusions set up in Vancouver so I do not have to travel three hours for them. That will save me time and my family time while they are with me during my battle. I am grateful for every single breathe I take and for all those willing to sit and be with me during my fight.