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

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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Granny Hips and College Trips

Hey peeps,

Got my MRI results on Friday and they were not exactly what I wanted to hear. I have Avascular Necrosis (AVN) in both of my hips. Not one, both. Only one of them is currently hurting due to inflammation/swelling of the joint. The cause of this, you might ask? Just another lovely perk of chemotherapy. Thank you steroids!

I’ve been pretty bummed out all weekend but am finally starting to feel back to my normal happy self. Sometimes you just have to ride out the negative feelings! I’m sad that I can’t run right now, but hopeful that I will be able to in the future. I will keep everyone updated as I continue to learn more about AVN and how severe my case is (seeing the specialist tomorrow!). In other news, I got in to my first choice college! I actually found out as I was on the way home from the doctor after finding out about my AVN. My mom and I both started hysterically laughing and crying at the same time. Crazy how life throws these curve balls at us! The video below is a little bit more of a detailed explanation of Avascular Necrosis and my feelings (hopefully tomorrow I won’t be so dead).

Thanks for reading/watching/existing,

xoxo Kathy

Friday

I’m a little bit bummed out tonight. I’ve been working so hard to get back in shape and build up my stamina and I have been seeing so much progress. So many of the goals that I had set for myself to help me get my life back on track have been achieved and I’m so happy to say that. But since my last round of steroids and vincristine I’ve been having some pain in my right hip. That was about two weeks ago. I figured initially that it was just a symptom of the chemo, but all of my other symptoms have already run there course and the pain is getting worse. Ugh. Can’t a sista catch a break?

I don’t mean to be complaining, I know that I am truly blessed. I am happy and I will continue to be happy and live my life positively no matter what happens, but sometimes you just need to let the bad feelings out. It feels crappy that I have to go through more pain, and that I might have to stop running, and that I have to limp around. It makes me feel weak and limited, a feeling that I just worked very hard to escape from.

I have yet to speak to my doctors about this as I don’t have my next visit for another week, and I was holding onto hope that the sensation would subside. There’s always something scary about presenting the doctor with a new symptom, but there is usually a huge sense of relief after doing so. It is easy to be afraid of the unknown, but once you know what you are facing you can empower yourself to fight back. I’m afraid of what the doctor will say about my hip problem right now. Because when I think about telling her I imagine the worst possible scenarios. Sometimes I let this way of thinking get me down, I let the fear swallow me up for a while. But then I remind myself that there are some things in life that I cannot change, and I need to focus on the things that I can do. Like telling my doctor the problem and getting the facts. Or telling my fear to shove it because I will not give in.

As soon as I know what the problem really is, I can start working towards eliminating it. I just wish I didn’t have one in the first place. Oi! Thanks for reading my rant. I feel a little better now… but my hip doesn’t!

Xoxo Kathy