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

Raw Feelings

My heart is broken. When I look in the mirror I see a beautiful girl. A girl with the world in the palm of her hands. I know that I am smart, funny, capable, caring, passionate, talented and oh so beautiful. A porcelain doll. But I am broken.  I have been permanently maimed by disease, from the inside to the outside. And the weight of it is almost too much to bear.

I am blessed beyond words for all of the goodness in my life. My smiles, my joy, they are never feigned. But I carry this heavy burden deep in my chest and in my darkest moments it becomes me. I will not be loved, a fear that I have harbored since I was a child. And it has grown with me, changed as I have changed, sometimes seeming to have disappeared all together and other times so present that it is blinding.

Dramatic, that’s how I would describe myself as an adolescent looking for “love” in all the wrong places and never finding it, either way. A similar struggle to most all teenage girls I’d imagine, but for me if felt like a curse. I would think, “here I am, so beautiful, so willing to love someone, and no one notices me, no one cares.” It consumed me then, I craved male attention in an unhealthy way but found none. Though torturous at the time I am sure that I am better for it now.

After high school I learned so much. How to be outgoing, warm and friendly. How to get the person I was on the inside a little closer to the outside. To be more approachable, to smile more freely, to start a conversation instead of wait to be noticed by someone. I also had my first experiences with love and dating. And with each failed relationship I gained knowledge, about myself, about how to love, about what it means to love someone in that way, the way that I have always craved to be loved.

When I got sick, I couldn’t think about love. What a distraction. What a distraction while I am here trying to live, focusing all of my energy on getting through the next day. But oh, it pained me. Of the few tears I shed through my illness I’m sure a majority can be attributed to the overwhelming and profound sadness which overcame me when I thought, “I will die before I am truly loved. I will not be married. I will not be a mother. No one will look at me like nothing else matters but the two of us, because I will not be here.” How absolutely horrible. How absolutely horrible, to have those thoughts cross my mind and know that they could have been true.

That says a lot about me. I learned so much during my illness, about myself, and about life. I am so grateful for it because I know exactly who I am and I see, with complete clarity, what is important to me in my life. I find happiness and goodness in every single day. But I will always wish for love. On my death bed, my heart was heavy because I knew I would never be loved or be able to share my love. That says a lot about me.

The fear, ever present through my youth and into adulthood, was changed by my illness too. It became something much more serious, like most things in my life. Before, it was teasing, a voice in the back of my head, taunting my insecurities. Now it is educated. It’s taunts are logical, they’re factual. They target the things that I truly cannot change, I can’t love away the deformity of my hips or the likelihood of relapse that I face everyday like I could love away the flaws of my past. I do not want to give in, but I often do. I fall down the rabbit whole and into a world of grief. There I feel unwaveringly certain, that I, in all my glory, will never be able to share myself with someone else, and the pain of admitting it is indescribable.

Why would anyone want to love me now? I might have joked about it before, but deep down I knew that there was nothing wrong with me, there was no reason that I could not be loved by someone, someday. There was no real doubt in my mind that I would find a partner. Now, everything is different. I feel so whole, most all of the time. More complete and sure of myself than I ever was before. But the rest of the time I am broken. Damaged beyond repair by something that gave me so much to live for.

Cancer showed me exactly what I want in life and destroyed my hopes of getting it. Physically, I am in fair form. As beautiful as ever when I am standing still. I hate myself when the pain in my hip is so unbearable that I have to limp. To show the world my weakness, my frailty, almost without my consent. I can hide the cancer, but I won’t. The guilt of it would consume me. And even if someone can look past all of that, they don’t know. They don’t know how impossibly difficult it is to watch someone who you love so dearly suffer so greatly and for so long. To wonder if they’ll make it through the next few hours. To wonder if they’ll ever be the same.

I am healthy now, but there is no guarantee. I will never be absolutely sure of my health. Could I let someone else walk into this trap? It’s not fair. I can’t ask someone else to carry these burdens for me. I don’t know that anyone else would want to, and I don’t blame them.

I would never describe my suffering as “dramatics” now, nor anyone else’s for that matter. My feelings are so real. They are irrational, I know that they are. I know that they sound like they are to others, which is why I don’t share this. I don’t know if I could stand to have my pain belittled by another. It is almost too much for me on its own than for me to invite others to criticize it. I know that they are irrational but I know that they are real. The tears I cry are real, the sadness in my heart is real, the tightness in my chest, the gasping for air, it is all real to me.

But most of the time, I am happy. Happy to be alive, happy to be loved so dearly by my family and friends, and happy to be able to love them in return. And with that happiness, and that love, I am able to keep a sliver of hope alive. I will not stop smiling, or being beautiful or being kind. I will not stop being me, the version of me that I love, and hopefully one day that will be enough.

Katherine

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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