leukoencephalopathyI’ll never forget waking up that morning. To be honest, I don’t even know what day of the week it was, but I know it was a week day because mom was getting ready for work. My cousin, Matthew, was visiting. I don’t remember him arriving, how long he’d already been staying with us, but I know that he was there that morning.

I woke up. It felt reasonably like any other summer morning in Washington. With a fuzzy mind and squinty eyes that had not yet adjusted to the bright light coming through the window, I reached for my cell phone to see what time it was. My cell phone, which I always placed on the same ledge next to my bed. The same spot where I reached for it every morning, with the same squinty eyes and the same left arm that I’ve always reached for it with. However, on this particular morning, the hand on the end of that arm didn’t work. I reached over to grab my cell phone and my left arm just flopped down and hit the side of the mattress.

It was at this moment that I realized two things. Something was terribly wrong and I direly needed to pee. I rushed to the bathroom and relieved myself which was quite the struggle with one working arm. I vividly remember holding my left wrist with my right hand and swatting the toilet paper roll to get it to unravel, with my left hand just flopping up and down. In these panicked moments, I began to shout for my mom. At first I could make the words, but slowly they turned to noises. I had staggered into my parents bedroom where my mom was getting ready for work. It didn’t take long for my mom to realize that there was something devastatingly wrong happening. It was at this point that I began to hurl.

Nothing came up. I ran (“stumbled”) back in to the  bathroom where I sat in front of the toilet and heaved uncontrollably. I remember my cousin was there because my mom told him to stand in the hall and watch me while she called the hospital. This next part kills me. I may or may not have been crying, whimpering or howling since I was literally lost for words when my mom came back to tell me to get in the car. Yeah, we had to drive during morning traffic to the hospital while my brain was disintegrating. I’ve never been in an ambulance before, but if I had to pick a time in my life where I probably should have been, it would be that morning.

I don’t remember much of the ride besides the occasional dry heave into the pink bucket on my lap. I guess I was sleeping, though I think of it more like slipping in and out of conscienceless. We pulled up to the valet and one of the guys helped me in to a wheelchair. He could tell there was something seriously f*cked up going on so he pushed my chair all the way back to clinic. They usually don’t even get you a chair. I didn’t have to wait at clinic, it was like a miracle. In fact, they took me back to my own private room which for some reason I remember thinking was a supply closet. Looking back now, it was probably some secret emergency-ready clinic room with tons of supplies in it in case some kid has a crazy reaction to a medication, go figure.

This time I was fully aware, or as aware as I could be, of the nurses shoving my favorite NG tube down my nose and accessing my port. I’m actually really impressed by their ability to do it while I was using every ounce of my limited control to fight them off. After that, things get fuzzy. I have flashes of memory that remind me just how disturbing the next two days of unconsciousness really were. I’m glad that I don’t remember the entire ordeal as the little patches that I retained are scarring enough to last me for the rest of my days. I feel worse for my parents, who where there with me the whole time, watching me suffer and not being able to do anything to help.

This next part is a little bit weird for me to tell. I honestly don’t know if the way that I remember these things is the way that they actually happened. After all, my brain was inflamed.

The first thing I remember is not being able to swallow. I knew that I had been admitted to one of the oncology floor’s in-patient rooms. I was desperately trying to communicate that I could not swallow but was unable to form words. I recall trying to focus all of my energy on writing what I wanted to tell the nurses but not being able to. I must have somehow communicated to them because I then remember there being a suction device like they have at a dentist office. However I couldn’t effectively communicate when I needed the sucking. I also remember that I couldn’t control my jaw. It would shoot over to one side, the right side, and seemingly get stuck there, as if my lower molars were caught on the outside of my upper molars. Then there would be so much pressure that it would snap back over and in to place, and repeat. I still hate the feeling/sound of grinding/clicking teeth.

Throughout all of my uncurious inflammation I was wailing. A meaningless shriek that meant nothing and that I could not control. I believe the sound still haunts my mother to this day. Something else equally as haunting was when I tried to communicate to her that I wished I was dead. I don’t particularly remember making a gun out of my hand and pointing it at my head, but the therapist waiting for me when I woke up told me that it was so. I do however, remember sitting on the edge of my bed and frantically trying to tell her something. I tried to write it on the note pad but could not. I was so frustrated that I just threw it and waved my hands around, I was probably crying. Then I focused all of my energy on forming these words, one at a time. I said, “I. Don’t. Want. To. Be. A. Retard.”

Not my finest hour. Of course, I didn’t and don’t mean to say the word retard in any negative connotation. I wasn’t in the right state of mind and it is not a term or word that I use lightly. What you must understand when reading this is that what I was in those two days was nothing short of a special needs person. And what I really meant in saying that was that if this was permanent, then I would rather die. And I had to get it across to her so that she would know that was my wish. I don’t mean to denote any special needs individuals or caretakers by saying these things. My own personal experience and choice does not reflect how I feel about special needs individuals whether they were born that way or not. To each there own. But for me, someone who has always been in control of her life, I couldn’t bare to carry on knowing just exactly what I would be missing.

I’ve had plenty of time to think on the matter. And I look at things like assisted suicide differently now. I am not now nor have I ever been suicidal except for in this instance. As soon as I came to and the inflammation had gone I didn’t even think on it. I didn’t even remember that I said that until the therapist brought it up to me. That is how much, in my normal life, that I don’t wish to die. But I think, if you put yourself in my shoes for a moment, and imagine one day, after living your whole life with a perfectly functioning and working body and mind, it just didn’t work. It didn’t work so much that you couldn’t do anything but watch the world go on around you, all the while knowing how ridiculous you looked and acted and felt. And there was nothing that you could do about it. If you could see it like that, then maybe you could understand.

Sometimes, people get in very bad accidents but they don’t die. They’re just different, handicapped. They might even end up in a similar state to mine. And plenty of them just live on, and live through it. Those people are stronger than me. They know what they have lost but they keep on anyway. Some of you might think that I sound selfish. That’s what suicide usually is, selfish. But I just think, I think in some cases, cases like this, that it isn’t. Because it couldn’t have been better for my mom and dad to have me, if all that I was is a shrieking, jaw clicking, drooling shell of the daughter that they really loved. But if I didn’t want it, they never would have been able to let me go.

Phew.

Luckily, things never got to that point. I remember requesting pain meds, and by that I mean a nurse suggested that I might be in pain in which case I replied yes (or moan) only so that I could get pain meds which I hoped would knock me out so that I could finally have some relief. It worked.

I’d say that’s enough for one emotionally draining blog post, wouldn’t you? I’ll finish up next week!

xoxo Kathy

Back in Action

Hi!

Remember me? Kathy? The person who writes this blog?

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I am finally back and fully recuperated from my trip across the pond to Ireland! What a beautiful country, so much history and so many places to explore. It was such a wonderful trip with family and friends. Over 40 of us flew over to participate in my cousins wedding! So much dancing! I’ll insert a few photos at the bottom of this post.

Jet lag was not my friend in Ireland or back here in the US. After a few days of misery, and some retail therapy at Topshop, I finally adjusted to the time change enough to really start enjoying myself. We went on several tours and out to plenty of pubs and we even stayed in a castle for a few nights before heading back home to the states. When I feel sick now, I stop and think things like, “is this really that bad? I mean you’ve had chemo, you’ve felt the lowest of the low.” I used to think, during chemo, that these kinds of thoughts would eventually comfort me, they don’t.

I’m really glad to be back home and fully recovered from my second dose of jet lag. And not only that, but my emotional side effects of being diagnosed with AVN. It took me longer than I thought it would, or then I wanted it to, but I’ve finally gotten myself back to a healthy and productive mental space. It sucks that I’ll have to deal with this for the rest of my life, but there’s no sense crying over something that I can’t change. I’ve just got to keep chugging along and doing what I need to do, get my life back together!

Got a lot of posts and videos planned for the next few weeks so stay tuned!

xoxo Kathy

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Our Castle!

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Hanging out in the Lobby

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When you order coffee in Ireland

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Supporting our team at Ross Castle!

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The leftovers

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A funny polaroid from the wedding

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Some of my Topshop swag!

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A stop on our tour of Dingle!

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Super classy meal

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Dinner with the family!

 

I Am Not A Hypocrite! (TFIOS Pre-Review)

Phew! I am beat. My counts are pretty high right now so my doctors have been increasing my chemo doses the last few weeks and I’m really starting to feel it. Either that or I’m feeling tired because I haven’t been able to exercise because of my hip issues/surgery incision. Fortunately, I got my MRI today and will hopefully know tomorrow what the deal is with the bum hip! Praying that it will not effect my running. I’m also feeling a little weird because I’m hoping my counts have dropped enough that they will lower my chemo again. Who wants their counts to be low? Just me.. okay. bye.

So I’ve decided to start reading The Fault In Our Stars by John Greene. In case you haven’t heard, seems like a fictional novel about a cancer patient/teen romance type deal. I’ve been skeptical about reading it because I know that it’s about a cancer patient. I don’t really know anything else about it except that it is being made into a movie. Both of these things make me feel a little bit uncomfortable about it. I first heard about the book while I was deep in chemo and knew that I didn’t want to read it then. I was too emotionally fragile to read about anyone else’s cancer, especially if it was fictional, while I was dealing with the real thing.

The truth of it is that nothing you see on television or hear from other people is going to define your experience with cancer. It is absolutely unique in every aspect for each and every person effected. That’s the truth, and that’s what matters. With that said, it’s hard to keep that in mind when you’re actually going through it. I was constantly comparing myself to other people who had cancer. This person lived, this person died, this person was horribly nauseous, this person had a horrible reaction to that chemo, blah blah blah. Eventually, I would remind myself that these people are not me, they don’t have my cancer, they don’t have my markers, they don’t have my doctors, they don’t have the same body, they are different. We all are. That said, they only way I was really able to solve that problem for myself (during chemo) was to avoid at all costs any stories of other people with cancer. Thus ruling out reading/watching/participating in TFIOS.

When I found out that they were making a movie about it, I became even more suspicious. As most people who have experienced cancer/chemo/radiation know, Hollywood loves to dramatize the experience. That’s great for Hollywood, but not great for people who get diagnosed with cancer and know nothing but what they see on TV, which seems miserable and awful  (i.e. me). Literally, the first thing my nurses said to me at the hospital when I was expressing my concerns was that I should throw anything I’ve seen on TV out the window. This worries me. I cannot support anything that will get so much publicity and touch so many people if it is a misrepresentation. There are already so many misconceptions about cancer/chemo, the world doesn’t need anymore false information. I don’t want anyone else to be as unprepared as I was for a cancer diagnosis.

With all of that said, I’ve been thinking about it a lot and both of those reasons for not reading the book are flawed. First of all, I can’t literally judge a book by its cover. I honestly don’t know anything about the story. All of what I just said is complete speculation on my part and I’m not down for that. Also, I just argued that everyone’s cancer experience is different, therefore, who am I to judge whether or not the characters/plot of this book are accurate or not? How will I ever know if John Green is dealing out “misinterpretations of cancer” if I don’t read the book? Therefore, I must read the book. At least then I will know the truth of it, either way.

Please comment if you’d like to share your perspective, but don’t spoil anything!

Stay tuned for my new review after I read The Fault In Our Stars! Hopefully will have it done by the time I get back from Ireland.

Thanks for reading!

xoxo Kathy