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..

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..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

NPR TFIOS Interview

Hello friends!

If you read my last post, you’d know that I have been taking advantage of some really great opportunities lately! One of which, was participating in an interview with NPR about The Fault In Our Stars (perfect timing since I just finished my review of the book and saw the movie). NPR’s Nancy Shute wanted to write an article comparing the way that YA/teen life with cancer is shown in TFIOS to what it is like in real life, so they contacted my hospital. They gathered a few patients who fit the age group and had read the book in order to get their perception. I was one of those patients, and it just so happened that I only read the book so that I could make those comparisons on my own blog!

Of course, I am very grateful for having had the chance to participate in this interview. It is exciting to me that a larger platform like NPR would do a story like this, drawing attention to the fact that what we see on TV and in movies is not always the truth, especially when it pertains to cancer. You can read the NPR article, written by Nancy Shute, here. If you took a moment to read it, you might notice that I did not have an answer to every question. In fact, I was not asked every question that they included, but that doesn’t mean that I don’t have an answer! So I thought that it would be fun to answer all of the questions here on my own blog.

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So is the movie version of cancer anything like cancer in real life?

I was weary of the movie because blockbuster cancer movies are typically unrealistic and over-dramatic. For example, they hang giant bags of horrible looking red chemo all over, people are constantly vomiting, and that’s just not how it is. I was so relieved and surprised to see that they didn’t do that! I feel strongly about this because I had a hard time convincing myself to sign the papers necessary so that I could begin chemotherapy because the only perceptions of chemo and cancer that I had were from movies and television. My nurses literally had to tell me, ‘If you’re thinking it’s like what you see on TV, it isn’t.’ I had this warped perception of how the chemotherapy would affect me. I don’t want other people to feel that way.

Truthfully, the movie doesn’t show much of what cancer, in terms of chemotherapy, is like. Neither of the two main characters are going through intense chemotherapy for the majority of the movie, this is also why they have full heads of hair. Instead, the movie focuses on life after cancer, or at least, a more stable prognosis. It shows more of the mental and emotional struggles that us cancer patients face, especially at the teen/young adult age. Of course, everyone’s experience with cancer (mentally, emotionally, physically) is different, but I thought that this was a good, realistic representation of what someone could go through.

Hazel and Gus joke about “cancer perks” and the “stereotypical Disney wish.” Did you get those?

Being over the age of eighteen at diagnosis I did not get a Make A Wish, Children’s hospital or no. To be honest I didn’t even know that everyone got a wish. Also, I was in Disneyland the week before I got diagnosed, so I don’t think I would have asked for that even if I did get a wish. I do really relate to “cancer perks,” it is something I say and hashtag on my Instagram posts. I think those kinds of sarcastic, ironic remarks are just part of being a young person with cancer!

Loneliness is a real theme for Hazel, the idea that she’s so isolated from regular teenage life. Did that happen to you?

When I got diagnosed, I was living in a different state than my family. I was just beginning my life and building my own community. Deciding to get treatment back at home with my family meant leaving my best friends and my independent life behind. I was never alone, but I definitely felt and still feel that I don’t have that social aspect in my life here, not with people my age. I don’t even know where to make friends now that I am not in school. I don’t feel like anyone isolated me on purpose, but I do feel isolated sometimes watching my friends go out and have fun without me. I know that they are still my best friends and that I will be able to get back to them soon.

Let’s talk hair. Did it bother you that Hazel made it through the movie with a full head of hair?

This did not bother me. People who go through chemotherapy do not always lost their hair. I wouldn’t have expected Hazel to be bald because she is not going through high dose chemotherapy, she is on a maintenance drug. I have begun growing my hair back since starting maintenance chemotherapy (low dose). It would have been unrealistic, in my opinion, for her to be bald.

Do you think the movie will help teenagers and adults be better prepared for their own health crises?

When I was first diagnosed, I wracked my brain for anything that I knew about cancer, leukemia and chemo. Most prominently I thought of A Walk to Remember, a story about a girl who had leukemia, she dies. Then, My Sister’s Keeper, oh wait, she dies. There were a few TV shows I remembered like Sex and the City, Samantha gets breast cancer and is seen with a giant bag of bright red chemo going in to an IV, yuck. Also Parenthood, Christina gets breast cancer and spends weeks in front of the toilet barfing her guts out. If anything, these things made me more afraid than I already was for this new chapter in my life. I figured I could either die or wish I was dead from overwhelming amounts of nausea. So no, speaking from my own experience, I do not think that The Fault In Our Stars would prepare anyone for a health crisis. It is about a girl who is going to die and a boy who dies. And when you are sitting in your hospital bed thinking, what is going to happen to me? you are not going to think of Hazel or Gus and feel comforted. You are going to push them out of your mind and think about how strong you are, how you are different, how you can do this and that whatever happens you will be okay. I don’t know that anyone will ever be prepared to hear that they have cancer.

**I would like to note that I do not intend for this post to symbolize any kind of negativity towards NPR, Nancy Shute, or her article. I had a lovely conversation with Nancy and am so grateful to her for allowing me to participate as well as for touching on this subject matter at all! I just thought this would be a good follow up post for my blog.**

Thanks for checking this out everyone, would love to know your thoughts/answers to these questions too! Comment below if you’ve got something to add!

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

My thoughts: The Fault in Our Stars Book

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It’s been a few weeks and I’m happy to say that I have finished reading and processing the book The Fault in Our Stars (TFIOS) by John Green. I mentioned a few posts ago that I would be reading and reviewing the book from a cancer patients perspective. Check out my apprehensions and assumptions before reading the novel here.

Taking the time to read my aforementioned post, you would know that I was especially nervous to begin reading the book. Taking the few extra moments to read the acknowledgement pages was greatly comforting, thanks to the author’s note, which reiterated that the story was a work of fiction to all readers. Feeling empowered by this notice, as if John Green was on my side, I began the first chapter. It took me a few days to finish the book, and for someone who has all the time in the world, that’s kind of a lot. I wouldn’t call it a page turner and I personally I found the story line to be too predictable. But hey, that’s not what I’m here for. I’m here to see that cancer, and people living with cancer are represented properly to a population largely made up of people with little knowledge of the disease.

Upon completion of the novel I can say that overall I was pleasantly surprised by the portrayal of a life lived with cancer. Not medically, as John Green gracefully discredits the scientific accuracy in the final pages of acknowledgements, but mentally and emotionally. I believe that cancer, for the patient, is a mental battle, more than it is physical. That is where we all overlap in some way. So that is what I was focusing on as I read this novel, looking for any way to overlap with Hazel, the narrator and main character.  It wasn’t hard, like I expected it to be. I even found myself highlighting different excerpts and thinking things like, “that’s exactly how it feels.” Even some of the sarcastic terms used like, “cancer perks” and “cancer side effects,” remind me of similar sayings used in my own day-to-day. I am happy to say that my assumptions about TFIOS, the book, were wrong. Cancer life was not misrepresented to millions of superfans all around the world. Way to go John Green!

Now, some people have spoken to me about the novel and how it “romanticizes” cancer. Well, it does. I personally don’t fault the book for that. It wouldn’t be as successful if it wasn’t a love story. And as a person who has suffered through cancer and lives with obvious differences (like Hazel’s oxygen) I would like to think that someday I can meet someone who has had similar experiences to me and can understand why I walk with a limp, or a cane, or crutches and love me anyway. They won’t think it’s creepy how often I think about death or how I’ll probably have fake hips by age 22 or that I know what it’s like to want to die. Because they will have experienced it too. But those are my own problems.

Overall, as a cancer patient looking to see that the story was an accurate representation of the struggle, I’d say that it was. In terms of reading for pleasure, I was not particularly enamored by the romantic love story between two suffering teenagers.

Gonna see the movie this week and I’ll put up a post of my thoughts on that soon!

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!