Announcement

Hi everyone!

I’ve got some news. Over the past few weeks I’ve realized some things. One, that I have been a terrible blogger (or maybe that I just am a terrible blogger) and two, that I don’t belong here (in LA) any more. So how am I going to fix these problems? Well, I’m going to kick myself in the pants and start blogging again, and I’m going to move.. again. That’s right, I’ll be back home in Seattle in a few short weeks. I must admit, it seems a little rash, but let me assure you that this is a decision that I did not make lightly.

When I first made the move back to LA I wrote this blog post. It was all about “completing the circle.” I’ve since realized that the circle will never be complete. In fact, there is no circle. There is just life and if you are lucky enough to keep living it than that is exactly what you need to do. That is what I need to do. Live my life as the person that I want to be, with the people I want to be around, in the place that I want live. And as much as I’ve tried to make that place be LA, it’s just not. I really, really thought that it was, I mean it definitely was the place for me at one point, but it’s not the place for me now. I’m a different person now, and as much as I want to be where my friends are, I know it’s not the right place for me to be right now. But I also know now that we don’t have to be in the same place to be friends. We are bonded, we love each other, and distance isn’t an obstacle in our friendship, like I used to fear that it would be.

I don’t regret coming back to LA. It was something that I had to do. It was my goal, my reason to keep going, to keep breathing while I was sick. I got through my most miserable days by keeping my focus on one goal, getting back to LA. I didn’t have a countdown to the end of chemo, I had a countdown to when I could move back to Los Angeles, to my friends, to my home. So how could I not go back? I couldn’t see past that goal until I accomplished it. It would have never occurred to me that everything I wanted was right in front of me if I hadn’t come back here. But now I know. So I’m going back. In all honesty, I didn’t give Seattle a fair shot. I did everything I could not to settle down there because I was so focused on returning to LA.

I’m so grateful for the three months that I will have had here. The chance to spend time with some of my favorite people, to show Val one of my favorite places. The chance to try it all again and to realize that things are different now, that I am different now. I am ready to go home now, I’m ready to start my life again.

Thank you all for your support, even through my silence. Expect to hear more from me soon.

xoxo Kathy

Photo on 11-13-14 at 8.46 PM #3

5things

Now, I’m not going to profess that I know everything there is to know about cancer, or anywhere close to that, but having been a cancer patient I think I have a pretty good idea of what we, or at least I, think people should know about cancer. Especially since I knew little to nothing about the disease or its fighters before I was slapped in the face with a diagnosis myself. Realizing and admitting that you are ignorant is not easy, it’s sort of like swallowing vinegar or 250 mg of prednisone, but once its done you have the opportunity to open your eyes and your mind to reality. You have the ability to learn, understand and analyze the things that really matter in this life, to see what goes on in the world and play a part in making it a better place. More than that, you can inform and help others in doing the same thing.

Of course, I don’t meant to call anyone ignorant, but I know that I was ignorant to many things when I was diagnosed with Leukemia at age 20 and since that diagnosis I have begun to pay more attention to everything going on in the world, starting with cancer. Everything that I knew about cancer was surface level, and honestly, that might be saying too much. Most of my detailed knowledge was from television, which basically means that I knew nothing besides the generic details that I’m sure everyone knows. Cancer of a particular area, spreads or doesn’t spread, different stages, chemo/radiation, works or doesn’t work. This left me totally unprepared for a cancer diagnosis, which is exactly what I got. I believe that if I knew what I know now then, I would have had a smoother transition than I did. And my hope is that by creating this list of things that I wish I knew, I can help others to cope with their diagnosis.

1thing

The Hollywood version of cancer is often an over-dramatization of what the cancer experience is really like. Sometimes the information and images shown on television and in movies is not accurate or out of date. For example, I was diagnosed with Leukemia, a term I remember hearing for the first time when I caught my Dad (I know, right?) watching A Walk To Remembereveryone’s favorite cancer movie about a teenage girl with Leukemia who falls in love. Well, that movie was made in 2002 and I was diagnosed in 2013, so when my mind immediately jumped to that movie after hearing the words “Leukemia,” I was panicking for nothing. Ten years later, cancer treatment is leaps and bounds from where it was back then. Of course, I didn’t know that then, but you do now, which brings me to my second point.

2thingScientifically, medically, you bet, things are getting good! No, there is not a cure for cancer, not yet anyway, but things are improving and will continue to until there is a cure for everyone. However, treatments are improving, people are surviving, things are getting organized and stuff is getting done. I think a lot of people don’t realize the progress scientists and doctors have been making in the past decade. Sometimes, when a problem isn’t right in our faces we don’t pay attention to it until a breakthrough happens, t least, that’s how I thought about things, “There hasn’t been a newscast for the cure of cancer so things must still be pretty bleak over in cancer-land.” This just isn’t the case. Chemotherapy and radiation are still what is used to treat cancer, but treatments are catered to the individual, to each case, to the specific cancer. We learn more and more about the disease, the drugs, the treatments everyday, whether its broadcasted or not!

3thingSo this is really cool. Sometimes I think maybe I’m the only person who didn’t know about this stuff before I was diagnosed but I figure, if I didn’t know there’s bound to be others! Everyone knows that chemo and radiation make you uncomfortable, they make you nauseous and give you pain, along with a myriad of other symptoms. It is only reasonable to assume that there are resources to counteract these symptoms. And there are! My personal favorite is nausea medicine. I have lived in gripping fear of nausea and vomiting for my entire life so my biggest concern with going through chemo was that I would have to deal with it every day for 8 months. Finding out about Zofran (my personal favorite) and several other nausea treatment options literally saved my life. I am proud to say that in eight months of intense chemotherapy I threw up a total of one time, that’s right one. So don’t be afraid of chemo, like I was, because there are plenty of resources to help you deal with the side effects!

4thing

This is something that I cannot stress the importance of enough. If I have cemented one thing into my mind from going through this whole ordeal it is that everyone is unique in our thoughts, paths, personality, and physicality. How does that relate to cancer? When I was sick I found myself comparing my illness and my experience to others around me. I knew that this was unhealthy and tried to avoid hearing about other cancer patients as much as possible. It is extremely difficult to keep your spirits up when you hear about someone with the same cancer as you dying. In these times, I soothed myself by reminding myself of the facts. We are all different. Everyone in the world, everyone with cancer, everyone with leukemia. All of my experiences are my own, my cancer is unique to me, my treatment roadmap, my doses, my schedule, my body is my own and it unlike anyone else’s. Sure we might overlap in some areas, we might have had the same drugs, but we had different side effects. So take comfort in the fact that you’re different, you’re you, and no matter what anyone else says about their friend who had this or their doctor who said that, your on your own individual journey.

5thing

When I was diagnosed I had a hard time dealing with the fact that I didn’t have a choice. I had to drop everything and become a full time cancer patient. I had to spend a good part of the week at the hospital willingly injecting myself with poison so that I might have a chance at living. It took me a while to be able to focus on the fact that there are some things in this life that we just cannot control. My own personal tsunami. But once I accepted this fact, I was able to move forward. Acceptance is the first step to recovery. The first step towards focusing on what really matters and what you actually are capable of influencing. Like if you want to be treated, where you want to be treated, how you are going to handle this crisis, what you are going to do after its over. When I realized that not being able to make one decision, gave me the opportunity to make so many more, like the decision to write this blog right now, it made everything hurt a little less. It enabled me to take back my power from the universe, to stop being the victim and to start being the fighter.

Knowledge is so powerful, and though knowing these things won’t stop the hurt, the sadness, the anger, the fear, I hope that it will lessen the blow for someone out there.

xoxo Kathy

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!

photo 2

 

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!

photo 1-2

 

Path to the labyrinth/beautiful view!

And here is me on the zip line!

xoxo Kathy

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