LeukoencephalopathyHere is the continuation of my story, to read the first installment, please click here.

The next morning, I woke up feeling.. okay. The doctors came in to do their rounds and explained that what had happened to me was a form of leukoencephalopathy caused by the methotrexate in my spinal fluid. I’ll be honest, I don’t really ask a lot of questions when it comes to medical deep medical mumbo-jumbo. I need to know a general idea of what, a reason why (if there is one) and what I need to do to make it go away. So the gist I got from the docs was that this leuko-business occurred due to an allergic reaction of sorts to the chemo. I usually sum it up as an inflammation of the fluid layer surrounding my brain. I honestly don’t know if that’s actually what it was but.. that’s how I always describe it.

The “antedote” for this reaction is.. cough syrup… no seriously. They stuck a tube down my nose and into my stomach to force feed me cough syrup.

As the day dragged on I began to feel worse and worse, nothing compared to the day before but I definitely wasn’t my usual chemo-ridden self. I became extremely nauseous, at least that was what I thought it was, and asked for a dose of zofran before I headed home. That’s right, home. Earlier in the day the doctors told us that my counts looked good and I could be discharged, a rare opportunity that my mother and I jumped at (it was my shortest hospital stay to date). This also meant that I could have the NG tube removed from my throat, but only if I could show everyone that I was able to drink and swallow on my own. Try swallowing with a tube stuck down your throat without gagging, yuck. I did what I had to do to get the hell out of there and choked down some water. A nurse came in and swiftly plucked the tube out.. a sensation that I was TOTALLY unprepared for and wished to never feel again thanks to the lovely amount of bile that came up with it.

Here’s something to keep in mind as you continue to read, the day that I experienced my first little bout of leukoencephalopathy via intrathecal methotrexate, was the day that I received yet another infusion of, ding ding ding! Intrathecal methotrexate! There was no way for us to know it, but leaving the hospital that day was a HUGE mistake. We were sent home by the hospital and told by the doctors that everything seemed fine and if something were to happen we should call. Looking back on it, I’m grateful that I got to suffer through the next few days at home instead of in, as I like to call it, Monkey Jail. I’m sure that anyone who has spent time in the hospital can understand that.

I arrived home feeling like crap and figured I just needed to rest and sleep off what remained of the reaction, besides, I pretty much always felt some sort of under-the-weather. I choked down my cough syrup gel caps, little red pills I took to calling, “dragon eggs,” and went to sleep. The next morning I didn’t feel much better, I might even have been a little worse. And we found out that I definitely was worse when we got a call from the hospital. The doctor who sent us home misread my blood counts and I needed to go back to clinic to get a blood transfusion, immediately. (This is funny because anyone who looked at my labs would have had to read them wrong in order for me to be discharged and sent home. It’s even funnier because my mom always requests a copy of my lab sheets to keep for her records and for some reason on this day she didn’t get one.)

Mom and I headed back up there, an hour each way, to get the blood. Needless to say we were cranky about the whole situation. I tried to tell the Nurse Practitioner who saw me while I was getting my transfusion that I felt more ill than normal but she thought it was just because of the blood and since I didn’t have a fever, sent me back home. Generally, a blood transfusion can solve so many of a cancer patients immediate problems. If you’re dizzy, winded, tired, you’re heart beats fast or you’re pale, blood can give you a nice boost of color and energy, it almost makes you feel like a normal person again. For these reasons, it was logical to assume that getting blood would make me feel better and I would be fine to go home. I wasn’t fine. I remember getting in to the car after leaving clinic and feeling so crappy that I told mom not to start the car yet. I waited until I felt a little bit better and then allowed her to start driving us home.

The next few days were.. miserable. The blood did not help at all. It is hard for me to remember a lot of what happened, I think that’s because I was mostly sleeping and resting, but there are a few things that I can share. I couldn’t stand to have the television on, the only thing I would allow was my mother to read to me before I went to sleep. I never left my bed and in my bed I hardly moved. I barely ate anything. One morning I woke up early and felt okay, so I started a movie on Hulu and actually requested food. A few bites in I began to feel yucky again. I shoved away the plate and turned off the movie. Later, mom tried to get me to go on a walk around the block. I refused and she pushed, thinking it would do me some good. I finally gave in but only got to the mailbox, a few feet from our house, before I felt so exhausted that I had to turn back. That was shocking to me. I’d had my fair share of days on end spent in bed and not eating, but I’d always been at least able to make it to the end of our street, even if I couldn’t go all the way around the block.

The worst thing, the hardest thing for me to relive, was when I was coerced into bathing. I couldn’t be up long enough to shower so my mom drew me a bath. She had to sit by the tub with me and help me get in and out. I wouldn’t say that it was embarrassing, but I would never have thought that as a twenty year old woman, my mother would have to give me a bath. It made me sad, for myself, the fact that this was what I had been reduced to in a few short weeks, after being so independent my whole life. It makes me sad now, to remember the times when I made my mom stay in the hall while I left the bathroom door open just in case I needed her help, because I couldn’t trust myself to take care of me. Cancer has a way of chiseling away at your independence, at your right to your own body, your own life. This is the mental tug-of-war with cancer, a mind game that I am still playing even today.

~to be continued~

Keep checking back for Part 3, that’s where things start to get really, well, shitty.

Thanks for the love everyone

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