Leukoencephalopathy1It has been a little longer than usual since my last post. There have been a lot of things going on, a lot of good and developmental projects that have been taking up my time and creative energy. I have also been working on a special post that has been a little bit difficult for me to complete.

I would hope that it comes off pretty evidently that I am a positive, strong, passionate and genuinely happy person but it would be a mistake for someone to think that I was always that way. I may have always been positive, strong, passionate and happy but I didn’t really understand myself, who I was or how to use and appreciate all of these truths until I lost myself. And when I found myself again I was different, better than I was before, I was the person that I am now, today, and hopefully will remain for the rest of my life. Now, I would like to share with you all the story of how I died and came back to life.

I have decided to make this post in several parts, it is a lot for me to relive all at once and I’d imagine that it would be a lot for a reader to take in as well. There are also some delicate topics that I need to discuss and I want be sure to take the proper amount of time and care to translate them appropriately.

Just over a year ago this photograph was taken of me in the hospital. This image documents the most disturbing time in my life..

Deathotrexate

..and here is the first part of the story:

I’d been planning a trip home, to Los Angeles, to visit my best friends. The tickets were purchased and all that I needed were some decent looking blood counts and a check off from my doctor. I wasn’t feeling well the morning of my appointment but that wasn’t exactly newsworthy, I mean I am a cancer patient. Things only got worse when the doctor told me I wasn’t going to be able to go on the trip I’d been planning. My counts just weren’t going to be where they needed to be and it would be too risky. Now, I’m not one to cry but I was pissed off, and if there’s anything that can bring me to tears its frustration. I rolled over on the examination table so I was facing the wall, tucked my legs knees up to my chest and quietly let a few tears out while waiting to be escorted to the procedure room.

I was still upset when they came to get me. I walked in to the room and laid down on the gurney, it was my last week of a four week cycle of spinal infusions. Comfortable with the routine at this point, I welcomed the anesthesia and the brief moments of peaceful and deep sleep that awaited me. But this was not just another routine back poke.

I woke up in the recovery room. Everything seemed normal at first, but I couldn’t shake the fogginess of sleep from my eyes. I didn’t seem to be able to focus my eyes on anything. No stranger to unusual body sensations, I tried to calm myself down, telling myself that it was just a sensation and it would pass. But it wasn’t passing. Our scheduler, Camie, came by and introduced herself. I’d heard of her and my mother had met her but I had not until this moment. When she walked away I laid back down on the gurney and realized that I had no recollection of what she looked like. I had just looked at this woman and had a brief conversation with her but I couldn’t remember what she looked like at all. That’s when I knew something was wrong, really wrong.

I turned to my mother and told her that their was something not right, I didn’t know what but something was not right and I needed a doctor. I tried to explain what happened but they doctors didn’t seem to be understanding. It just seemed like the cognitive functions of my brain weren’t working, my eyes weren’t working. After that all I remember is patches. I really had to go pee but I couldn’t go. They were trying to get me to take some medicine but I wouldn’t or couldn’t do it. I vaguely remember going in for the MRI and CT scans. The next time I was fully cognizant was later that night when I woke up in a hospital room with an NG tube shoved down my nose. I quickly decided that those were the worst things ever. Have you ever swallowed a bit of spaghetti and had a long piece of noodle get caught going down your throat, and then you kind of have to pull it back up from the end that’s still in your mouth? Yeah, children live weeks on end like that.

And the party didn’t stop there, having not yet decided what was wrong with me, my doctors decided to give me a dose of Vancomycin in case of a blood stream infection. While my pump was administering the dose my mom took the time to fill me in on what exactly had happened while I was unconscious. Specifically my constant whining about needing to use the restroom and the nursing staff’s various attempts to allow me to do so. None of which actually included taking me to the bathroom which is why I refused all of them (or so I imagine as I was unconcious). While we were talking I began to feel very hot and itchy, an allergic reaction to the antibiotic running through my veins (as if I hadn’t had enough!). The nurse came in to give me a dose of Benadryl to counteract the effects, consequentially knocking me out once more.

~To be continued~

This is only the first day of a two week long nightmare that will be with me for the rest of my life. Check back for part 2 later this week!

xoxo Kathy