Déjà Vu

Twice today I experienced déjà vu and it got me thinking. Once this morning, when my aunt decided to venture out and pick up breakfast burritos. The prospect of having a delicious breakfast burrito made me the back to the last time that I had one which I realized was, coincidentally, almost exactly one year ago. Last year at the beginning of August I was in San Diego/LA, enjoying the best breakfast burrito I’ve ever had.

I decided to move downstairs to eat. So I hobbled down on my crutches and sat at our kitchen table. From there, I had a decent view of outside, and noticed that someone had finally reset the patio furniture which had been strewn about the yard since my sister’s graduation party. I promptly decided to move outside and as I sat down on one of our cushy whicker chairs and looked out at our lush, sun drenched yard I realized that almost exactly a year ago I was doing this very same thing. I was resting outside on the patio furniture, set almost exactly as it is today, breathing in fresh air and trying to heal my aching body. Thankfully, this time I’m only trying to heal my aching hips.

These weird coincidences got me thinking about how much has changed since then and how much is changing still, but how much is still exactly the same. Peoples lives change all the time. My life, for example, has changed a great deal over the past few years. I graduated highs school and moved to away to a new city all on my own. I made amazing new friends in my new home and started at a great school. A year later, I graduated from that school and was promptly diagnosed with cancer. Shortly after, I moved back to my hometown where my cancer remised. And through all of these changes there are still things in my life that are exactly the same.

I often think that cancer changed me, completely. That the old Katherine died during that period of my life and what came out of it was a different Katherine, a better one. But I don’t think that’s true anymore. I have changed so much throughout the last few years, cancer probably being the most impactful, but I am still the same me. There are things about the person that I am today that are the same as the person I was before. Little things that make me, me. Like my favorite places to go, my favorite things to do, my favorite people to be with, my favorite restaurants, my favorite stores and my good and bad habits. The little things that have always made me tick, and always will.

Nothing will ever really change all of who you are. You can change the way you behave, the way you react, the ways that you live your life, but there are some things about you, the things that make you who you are, that will never change. So don’t worry, because you’ll ALWAYS be you!

xoxo Kathy

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

Surgery and Life Update

Hello all of you beautiful people,

As some of you know I had surgery on both of my hips to help with my Avascular Necrosis (AVN) this past Wednesday. AVN is caused by low blood flow to a bone or joint, I have it in both of my femoral heads. In my case it was caused by high dose steroid use during chemotherapy. The low blood flow causes the bone to die and become misshapen which results in a lot of pain! The surgeon drilled holes through my bones to break up the dead bone tissue and allow more blood to reach the area, hopefully resulting in new tissue growth and no more AVN!

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The surgery went well and I didn’t even have to spend the night in the hospital like we originally thought (thank god). I kicked all of the pain meds after two days and have been able to get around fairly well on my crutches. I even went shopping yesterday! I am so pleased as I have a lot of exciting stuff coming up in the next few weeks and a lot of it was dependent on how I’d be feeling after this procedure!

Next week I will be participating in a panel at the SMAHRT (Social Media and Adolescent Health Research Team) Conference put on by the Seattle Children’s Research Institute. The next day, I’m jumping on a plane and heading to a camp for young adult cancer patients in Arizona. The camp is being put on by the Dream Street Foundation and it is at a spa! To be honest, I’m a little nervous because there is supposed to be a lot of heartfelt talks and group therapy which is something I have been avoiding for months. I’m hoping to have a great experience and meet some cool people, and if all else fails, at least its at a spa!

Lastly, I am finally moving back to LA! Most of you know that I was living in LA and going to design school before I got sick. Most of you probably don’t know that since I got back and began chemo, all I’ve been trying to do is get back there! The thought of getting back to LA and back to my friends and my life was what got me through the dark times in my chemotherapy. It’s taken me longer than I thought it would, but I never gave up and now I’m finally going to be moving back! I can’t wait for August to start and for me to start taking my life back for real!

Look out world!

xoxo Kathy

PS I’ll be continuing my Leukoenceph. story this week!! Click here for part 1 or part 2

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

 

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!