Full Circle

So here we are again.

Some of you may know that over this past week I’ve been in the process of moving from Seattle to Los Angeles. What a lot of you probably don’t know is why.

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This move is very important to me. It is very scary but it also feels vital, I have to do it. I was living in LA and had just graduated from FIDM (The Fashion Institute of Design and Merchandising) when I got diagnosed with cancer. Well, it was suspected that I had cancer so I went home immediately to get diagnosed but, you get the gist. I had been in LA for just about 15 months. I had suffered through those terrible first three where you miss your family, your home, everything normal. I had forged irreplaceable friendships and created my own home, my own community, my new normal. And then I was ripped out of “my life,” and shoved into a totally new one. Literally, I found out I “might” have cancer in the morning and by the evening I was on a plane home. My roommates had to pack up all of my belongings (some of which are still here, btw) and send them to WA.

Sure, I could have stayed in LA if I wanted to. If I wanted to suffer through it alone, burden my friends with the responsibility of taking care of me, of watching me lose myself over and over again. But I knew what was best and even though I didn’t necessarily want to I knew that I had to go back home. I don’t regret that decision, I needed to be with my family. But that didn’t make it any easier for me to leave my “new” family, it broke my heart.

I still remember when the doctor came in to diagnose me and I asked, “When can I go back?,” and he said, “It will be at least eight months.” So there it was. Eight months. My biggest fear was that during those eight months, my LA community would dwindle, my irreplaceable friends would forget about me and move on. They’d get caught up in the constant motion of LA and leave me in the dust. I mean, I’d only known them for a year or less-than, and I didn’t know if they valued my friendship as much as I valued theirs.

Truth be told, I don’t care that much about LA. Yeah I love the beach, I love the shopping, I love how modern and cool everything is. But I don’t feel like I can’t find just as many or just as spectacular things to love in Seattle or anywhere else for that matter. I care about my friends. I wasn’t sitting at home thinking I’ve got to beat this, I’ve got to survive cancer. I was thinking, I’ve got to do this, I’ve got to take this chemo so that I can get to the eighth month and go home, back to LA, back to my beautiful friends. As far as I’m concerned, the chemo fought the cancer, I fought the emotional repercussions and tried my best to enjoy my time in Washington with my family. But I did it all with a fire fueled by my determination to get back to Los Angeles.

Fortunately, they didn’t leave me in the dust. They were amazing and supportive and even made trek up to visit me in Seattle a few times while I was sick. But even though I was comforted to know that our relationships could thrive despite the distance, it didn’t alter the way that I felt about moving back to LA. I felt like it wasn’t fair, the way that I had to leave. I wanted to come back, even if its just for a while, so that I could have the opportunity to make the choice of my own accord.

After eight months, I still couldn’t go. I had to wait two more months to begin maintenance chemo, and then still another three months to get the doses of that stabilized. At that point it just seemed silly for me to move because my family was going to Hawaii and Ireland within a month of each other. And after that it would basically be June, which is important because at the end of July, my old roommates would have an opening for a roommate. So why would I put myself through all of the torture of finding my own place or new roommates, when I could just wait a few months, do some traveling, visit LA as often as possible and then move back in with my best friends? I wouldn’t, and I didn’t.

So here I am. Sixteen months later, sitting in my apartment which I share with two of my best friends (and Kim who is fast becoming a third) writing my first blog post of this new chapter in my life. Oh, and Val’s here too.

It feels a little scary to actually be here, but it feels right at the same time. I’ve officially completed the circle.

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!

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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

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

 

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