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

I’m Still Here

Today is the eve of my 22nd birthday. I have always been a fan of birthdays, I mean why not? You basically get to walk around and flaunt how special you are because you were born. You get presents and hugs and smiles and everyone loves you for one whole day. But this year, I feel differently. I don’t feel excited, I don’t feel like bouncing around and shouting and the top of my lungs that “IT’S MY BIRTHDAY!” Instead I feel accomplished, I feel proud, I made it one more year, I am still here. I am not excited because I’m turning one year older I am excited because I am able to turn one year older. And I feel like that’s wrong, like I need to keep it a secret. No one wants to celebrate that I’m still alive, like me. I’ll tell you why they don’t: It makes people uncomfortable to talk about reality, it makes people uncomfortable to talk about dying.

Listen, I get it. It’s not like I love to think about dying but it’s something that I think about a lot because I have to. I’m a planner. I like to be in control. I prefer always to be realistic about my circumstances but hope for the best outcome. So when faced with cancer, I had to look at all of my options and plan for the best and the worst scenario. I’d say that’s life and death here. Planning for life is very easy. You think of all the things you want to do if you survive and then you start trying to do all of them as soon as possible. It probably won’t go how you planned, keep smiling.

How do you plan for death? Well, it’s very simple. You start thinking things like this, “If I died right now, would I be okay with that?” The word “okay” here means a few different things like am I happy, do I feel good, am I satisfied with my last day, did I do things I wanted to today, am I in a good mood. If the answer to any of these questions is no, than you better turn your day around right quick. This is also surprisingly easy to do. You simply adjust your attitude. A novel concept that my mother has repeated to me thousands of times throughout my life, sometimes with a lovely threat attached at the end. A concept that I never figured out was so easily under my control until I spent everyday wondering if it would by my last.

You see, your attitude, your emotions, your perspective, they are entirely under your control. So if you don’t feel happy or something annoying happened like you got a flat tire, and now you’re going to be late, and you’re dog chewed up all of your new underwear, and then she threw up on the carpet, and everything is just going wrong today and it has put you in a horrible mood, you can just decide to be happy about it. I mean really, what is the best way to get back at your annoying sibling for doing something just to piss you off? Ignore them, ignore what they did, what they’re doing. You say, “Hey universe, I know you’re trying your best to get me down today but good frikkin luck cause I’m just HAPPY!” You can actually sing that last part.

And that is how you conquer the fear of death and embrace one of the many secrets of life. Even now, while I seem to be well on my way over this mountain, I still check in with myself. I may no longer fear dying but I do fear the unknown. I’m afraid of what will happen tomorrow. But I know that all I can do is be happy, keep my attitude in check, and keep smiling.

In regards to my birthday: It is a celebration of my survival for one more year. I don’t think I will ever think of it in any other terms again. Of course, it’s a happy day, but there can also be tears. I will cry, for myself and all of my suffering. I’ll also cry for all of the beautiful angels who didn’t make it to another year. And I will wonder, why me? Why am I so lucky? I will be so grateful that I am still here, I will embrace the beauty of the world all around me and the wonderful people that I get to share it with. And I will love myself for being so strong. I will not tell everyone I see, or wear a tiara, or a sash. I will silently smile, and let the overpowering feeling of accomplishment wash over me as I repeat to myself in my mind “I’m still here.”

xoxo Katherine


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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

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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