My week on Dream Street

Hello to my wonderful friends,

Did you miss me? Did you even notice that I was gone? It didn’t feel like I was. It felt like I was in a dream. Please watch this video to see why!

Did you watch it? I hope so!

I promise, the follow up for my Leukoenceph. story will be up this week before I begin my long drive back to LA!

Here’s a few pics of the trip and a video of me zip lining for you to enjoy:

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First group photo!

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Beautiful view!

10527298_10203329063002008_1527107807410751017_nThree of the “Scooter Girls”

photo 2-2The rock that I painted to leave at Canyon Ranch

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Group photo after funk class!

photo 3Beautiful fountain!

photo 4Putting our crutches to good use after my scooter died!

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The scooter girls minus our scooters!

photo 3-2One of the javelina’s we found!

10464269_10105222538328204_7496280548348212800_nOur last group photo!

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Path to the labyrinth/beautiful view!

And here is me on the zip line!

xoxo Kathy

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

I am Ballsy

Hello beautiful people!

Sorry for the break in posts, I followed up my Irish Excursion with a brief trip to LA to see my favorite people. While I was there, I finally caught up on some work, taking advantage of opportunities and stumbling across some new ones!

I was approached by Thomas Cantley, founder of I Am Ballsy, group which strives to make men more aware of their bodies, especially as it pertains to male reproductive cancers. How does that apply to someone like me? Well, as it turns out, Thomas uses the I Am Ballsy Facebook page and Instagram to feature awesome people who have overcome crazy obstacles in life. Everyday, the page pays tribute to a different ballsy bad ass by sharing an image along with a story written by them, describing why they are ballsy. A few days ago, I was the featured person on that page and of course, I would love to share my image and story here! I urge everyone to check out the I am Ballsy website and like the Facebook page. You can also vote for Thomas to be “The Ultimate Men’s Health Guy,” here.

Without further ado, here is my “I am Ballsy” Story!

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I’ll be honest, I had to use Urban Dictionary to look up exactly what being “ballsy” means. Not because I’d never heard the term before, but because I never thought of it as a word to describe me. Not until I was approached about writing this statement. Knowing that someone thought of me as ballsy, ballsy enough to write about how ballsy I am, got me thinking about what really made me seem ballsy.

Am I ballsy because I got diagnosed with Leukemia at age 20? Is it because I traded my life in Los Angeles, living with my best friends and not having a care in the world, for the pokes, prods and pitfalls of chemotherapy in dreary Seattle? Does having more blood transfusions and hospitalizations than I can count make me ballsy? What about waking up in the morning and realizing that you can’t control you’re body aka Leukoencephalopathy via methotrexate (deathotrexate)? Or is it because I walk around with chronic pain in both of my hips from Avascular Necrosis? Am I ballsy because I will have robot hips before I’m 25?

All of these facets of my life passed through my mind while I was brainstorming what to write about how I am ballsy. But none of them really fit, none of them inspired me or made me feel.. ballsy! But why not? It took me a while to come up with a good answer for this. Those things don’t make me ballsy, they don’t make me gutsy or intense or brave or amazing, because I didn’t have a choice in any of them. They just happened to me, like they could have happened to anyone. What I did have influence over, was my response to all of these things just happening to me. And that, my friends, is what makes me ballsy. My ability to stay positive, stay motivated, stay me, through all the bull shit that, just happened. And more than that, having the ambition to spread that positivity and inspiration to as many others as I do!

Any of you feeling ballsy? Tell me about it, leave a comment below!

xoxo Kathy