Is This What “Surviving” Feels Like?

It’s been a year and 10 months since I finished what I like to refer to as the “intense” phase of my chemotherapy regiment. Intense meaning being pumped so full of poison that you can’t find one hair on your entire body, spending days on days on days driving an hour (there and back) to the outpatient clinic, and all of those wonderful hospital stays for silly things like the common cold or a blister on your foot.

It was a blessing and a curse to be done with it. But I wasn’t really finished. As part of my treatment plan I had something called “maintenance therapy.” Small doses of mostly oral chemo to be administered over the next year and a half as a way of regulating the restart of my newly healthy immune system. It was during this time that I was able to start recovering both physically and mentally. My hair began to grow back, I regularly met with a  physical therapist to regain my strength and I reveled in the blessing of remission.

I was a bubble of positivity, I felt like I’d been to the end of the earth and back. I was a completely new and better person than I’d been 8 months before. My illness gave me fresh perspective and the ability to appreciate every moment. I was so excited to live. And so thankful to be alive.

Fast forward.

It is now November of 2015. I can’t remember the last time I went an entire day without considering relapse. It’s been three months since I finished my maintenance therapy and lately having no poison in me feels like the biggest poison of all.

It has been suggested to me that I am suffering from some form of Post Traumatic Stress. I feel constantly on the edge of a breakdown. I feel anxious. I feel isolated. I feel scared. More so than I ever felt when I was actually sick. It was different then, I was already sick then. All I could do was sit back and let it all play out. I was either going to be cured or I was going to die. Besides getting to my appointments and taking my medicine the only thing I could do was choose to be happy or miserable. It was easy to be happy then.

Now I worry. It has occurred to me that there is nothing keeping me from relapse. No more little maintenance pills regulating the production of my cells. I know that it is illogical. I know that it is unhealthy. I know that I should not, but every ache, pain, lump, bump, bruise, funny feeling, bout of tiredness, sends me spiraling out of control.

I have dealt with anxiety my whole life but never to this extreme. My arsenal of coping mechanisms developed over the years is no match for this level of paranoia. It kills me that I can’t seem to fix it myself. I beat cancer, shouldn’t I be able to keep these poisonous thoughts from my mind?

And because I can’t I feel guilty. I don’t feel guilty for surviving, I feel guilty for surviving and not enjoying it. I am painfully aware of the fact that I am finally free from all chemotherapy, my energy level is at its peak of the past three years, yet I can’t seem to find a way to make the most of it. I am struggling to be happy, something that should come so easily to someone so blessed. And it feels horrible.

At first, I thought cancer made me special. I felt strong and inspired. I survived. I wanted to share my experience and be an inspiration or at least a friend. But lately I’ve shied away from all things cancer. This blog, the people that I’ve connected to through it, I can’t even listen to the ads on the radio. I don’t want it to be a part of me anymore. I’m no longer proud of my experience, I wish it never happened.

And I am tired. I’m so tired of carrying this burden.

But I’m strong. And I know that for damn sure. And I am confident in the fact that this is a phase in my recovery. Maybe its the worst phase. Is it over yet?

xoxo Kathy

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I took this picture one day after chemo. I was sitting on the counter in the bathroom looking at my reflection but not seeing myself. That girl is not me, but I see her today, just like I did then. Who is that sad girl? How can I help her?

Relay For Life 2015 Speech

For my 20th birthday, my best friends threw me a surprise birthday party. It was the first of many surprises that year and in the years to follow. Surprises that lead me here, speaking to all of you, and as you might have guessed, not all of them were as happy as a surprise birthday party.

I imagined my 20s as any young woman probably would. I would have my first alcoholic beverage, graduate college, and begin my career. Maybe I would even meet that special someone, get married, settle down, and start a family of my own. Instead, I had to face the very real possibility that I might not live to experience any of those things.

Five months into my 20s, I was diagnosed with Leukemia. I woke up one morning in my apartment in Los Angeles where I was attending school, and by that night I was in the emergency room at Swedish Hospital, in Seattle. I will never forget that day. [Pause ­ Look at audience]

I was quickly transferred from Swedish to Seattle Children’s Hospital, where I endured 8 months of outpatient chemotherapy and 10 days of radiation. One month into treatment, I was declared in remission, and thankfully have remained there ever since. Although I was comforted to know that my body was responding well to treatments, the following 7 months of infusions, procedures and isolation did well to remind me just how fragile life really is.

I lived every day of that eight months as best I could. Some days I was almost normal, I would throw a wig on, some of my “real clothes,” and some makeup, and I would be, almost, me. Of course, that version of me had to sit down often, be out for shorter lengths of time and constantly have crackers, water and nausea medication on hand, but beggars can’t be choosers. Those days quickly became known as, “the good days,” and though there weren’t as many as I would have liked, there were far more than I expected.

Unfortunately, along with “good days” came “bad days.” Days where I was too tired or too sick to get out of bed, days where I experienced the “rare” side effect of a new chemo, and endless days spent in the hospital being told that my blood counts were not high enough for me to go home. Besides my physical challenges, I mourned my old self. I was sad to be missing out on the life that I should have been living, sad at the thought of maybe never being able to live it, and sad because I missed being me.

Gratefully, I am now 22 and have been in remission for just over two years. I have been finished with my intense treatment for almost a year and a half, I will finish my two years of maintenance chemotherapy in August, and aside from this hip I’m about to get replaced, I feel amazing. I feel like me. Not the old me, the me that I was before I got sick, but like a new me. Just as familiar as the old version, but so much better.

Yes, I said better. I went through this horrible ordeal at a rare and critical time in my life, so how could I possibly be better than I was before? I will tell you. The old me did not understand or appreciate life the way I do now. As a result of my illness I was abruptly forced to mature, I felt catapulted into adulthood. Instantly, it was as if I could actually grasp the worth of all of the life lessons I had ever heard, and I could finally see how to put them into practice in my own life.

The new me, the new Katherine, appreciates the world and all of its beauty and blessings. She stares a little bit longer at the moon on a clear night, or the mountain on a sunny day. She knows the strength of a community, and the power of a few kind words from a total stranger. She understands how infinitely lucky she is to have the undying love and devotion of her overwhelmingly supportive family and friends. And more than anything, I know how blessed I am to still be here and be allowed the opportunity to appreciate all of those things.

I am still here because of people like you, and events like this, that raise money for cancer research and resources. As of now, there is no cure for cancer, but I am living proof that things are getting better. Slowly, but surely, research and funding have been improving cancer treatments and improving survival rates. And although, as some of us know, all too well, the treatments don’t always work the way we want them to, we know that with continued support of foundations like the American Cancer Society,

and participation in events like Relay for Life, we can play a part in ensuring that the result of cancer treatment is what we want it to be, every single time.

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

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!

AVNsurgery

 

AVNpreop

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

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.

NPR_Graphic

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