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

LeukoencephalopathyHere is the continuation of my story, to read the first installment, please click here.

The next morning, I woke up feeling.. okay. The doctors came in to do their rounds and explained that what had happened to me was a form of leukoencephalopathy caused by the methotrexate in my spinal fluid. I’ll be honest, I don’t really ask a lot of questions when it comes to medical deep medical mumbo-jumbo. I need to know a general idea of what, a reason why (if there is one) and what I need to do to make it go away. So the gist I got from the docs was that this leuko-business occurred due to an allergic reaction of sorts to the chemo. I usually sum it up as an inflammation of the fluid layer surrounding my brain. I honestly don’t know if that’s actually what it was but.. that’s how I always describe it.

The “antedote” for this reaction is.. cough syrup… no seriously. They stuck a tube down my nose and into my stomach to force feed me cough syrup.

As the day dragged on I began to feel worse and worse, nothing compared to the day before but I definitely wasn’t my usual chemo-ridden self. I became extremely nauseous, at least that was what I thought it was, and asked for a dose of zofran before I headed home. That’s right, home. Earlier in the day the doctors told us that my counts looked good and I could be discharged, a rare opportunity that my mother and I jumped at (it was my shortest hospital stay to date). This also meant that I could have the NG tube removed from my throat, but only if I could show everyone that I was able to drink and swallow on my own. Try swallowing with a tube stuck down your throat without gagging, yuck. I did what I had to do to get the hell out of there and choked down some water. A nurse came in and swiftly plucked the tube out.. a sensation that I was TOTALLY unprepared for and wished to never feel again thanks to the lovely amount of bile that came up with it.

Here’s something to keep in mind as you continue to read, the day that I experienced my first little bout of leukoencephalopathy via intrathecal methotrexate, was the day that I received yet another infusion of, ding ding ding! Intrathecal methotrexate! There was no way for us to know it, but leaving the hospital that day was a HUGE mistake. We were sent home by the hospital and told by the doctors that everything seemed fine and if something were to happen we should call. Looking back on it, I’m grateful that I got to suffer through the next few days at home instead of in, as I like to call it, Monkey Jail. I’m sure that anyone who has spent time in the hospital can understand that.

I arrived home feeling like crap and figured I just needed to rest and sleep off what remained of the reaction, besides, I pretty much always felt some sort of under-the-weather. I choked down my cough syrup gel caps, little red pills I took to calling, “dragon eggs,” and went to sleep. The next morning I didn’t feel much better, I might even have been a little worse. And we found out that I definitely was worse when we got a call from the hospital. The doctor who sent us home misread my blood counts and I needed to go back to clinic to get a blood transfusion, immediately. (This is funny because anyone who looked at my labs would have had to read them wrong in order for me to be discharged and sent home. It’s even funnier because my mom always requests a copy of my lab sheets to keep for her records and for some reason on this day she didn’t get one.)

Mom and I headed back up there, an hour each way, to get the blood. Needless to say we were cranky about the whole situation. I tried to tell the Nurse Practitioner who saw me while I was getting my transfusion that I felt more ill than normal but she thought it was just because of the blood and since I didn’t have a fever, sent me back home. Generally, a blood transfusion can solve so many of a cancer patients immediate problems. If you’re dizzy, winded, tired, you’re heart beats fast or you’re pale, blood can give you a nice boost of color and energy, it almost makes you feel like a normal person again. For these reasons, it was logical to assume that getting blood would make me feel better and I would be fine to go home. I wasn’t fine. I remember getting in to the car after leaving clinic and feeling so crappy that I told mom not to start the car yet. I waited until I felt a little bit better and then allowed her to start driving us home.

The next few days were.. miserable. The blood did not help at all. It is hard for me to remember a lot of what happened, I think that’s because I was mostly sleeping and resting, but there are a few things that I can share. I couldn’t stand to have the television on, the only thing I would allow was my mother to read to me before I went to sleep. I never left my bed and in my bed I hardly moved. I barely ate anything. One morning I woke up early and felt okay, so I started a movie on Hulu and actually requested food. A few bites in I began to feel yucky again. I shoved away the plate and turned off the movie. Later, mom tried to get me to go on a walk around the block. I refused and she pushed, thinking it would do me some good. I finally gave in but only got to the mailbox, a few feet from our house, before I felt so exhausted that I had to turn back. That was shocking to me. I’d had my fair share of days on end spent in bed and not eating, but I’d always been at least able to make it to the end of our street, even if I couldn’t go all the way around the block.

The worst thing, the hardest thing for me to relive, was when I was coerced into bathing. I couldn’t be up long enough to shower so my mom drew me a bath. She had to sit by the tub with me and help me get in and out. I wouldn’t say that it was embarrassing, but I would never have thought that as a twenty year old woman, my mother would have to give me a bath. It made me sad, for myself, the fact that this was what I had been reduced to in a few short weeks, after being so independent my whole life. It makes me sad now, to remember the times when I made my mom stay in the hall while I left the bathroom door open just in case I needed her help, because I couldn’t trust myself to take care of me. Cancer has a way of chiseling away at your independence, at your right to your own body, your own life. This is the mental tug-of-war with cancer, a mind game that I am still playing even today.

~to be continued~

Keep checking back for Part 3, that’s where things start to get really, well, shitty.

Thanks for the love everyone

xoxo Kathy

 

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

I Am Not A Hypocrite! (TFIOS Pre-Review)

Phew! I am beat. My counts are pretty high right now so my doctors have been increasing my chemo doses the last few weeks and I’m really starting to feel it. Either that or I’m feeling tired because I haven’t been able to exercise because of my hip issues/surgery incision. Fortunately, I got my MRI today and will hopefully know tomorrow what the deal is with the bum hip! Praying that it will not effect my running. I’m also feeling a little weird because I’m hoping my counts have dropped enough that they will lower my chemo again. Who wants their counts to be low? Just me.. okay. bye.

So I’ve decided to start reading The Fault In Our Stars by John Greene. In case you haven’t heard, seems like a fictional novel about a cancer patient/teen romance type deal. I’ve been skeptical about reading it because I know that it’s about a cancer patient. I don’t really know anything else about it except that it is being made into a movie. Both of these things make me feel a little bit uncomfortable about it. I first heard about the book while I was deep in chemo and knew that I didn’t want to read it then. I was too emotionally fragile to read about anyone else’s cancer, especially if it was fictional, while I was dealing with the real thing.

The truth of it is that nothing you see on television or hear from other people is going to define your experience with cancer. It is absolutely unique in every aspect for each and every person effected. That’s the truth, and that’s what matters. With that said, it’s hard to keep that in mind when you’re actually going through it. I was constantly comparing myself to other people who had cancer. This person lived, this person died, this person was horribly nauseous, this person had a horrible reaction to that chemo, blah blah blah. Eventually, I would remind myself that these people are not me, they don’t have my cancer, they don’t have my markers, they don’t have my doctors, they don’t have the same body, they are different. We all are. That said, they only way I was really able to solve that problem for myself (during chemo) was to avoid at all costs any stories of other people with cancer. Thus ruling out reading/watching/participating in TFIOS.

When I found out that they were making a movie about it, I became even more suspicious. As most people who have experienced cancer/chemo/radiation know, Hollywood loves to dramatize the experience. That’s great for Hollywood, but not great for people who get diagnosed with cancer and know nothing but what they see on TV, which seems miserable and awful  (i.e. me). Literally, the first thing my nurses said to me at the hospital when I was expressing my concerns was that I should throw anything I’ve seen on TV out the window. This worries me. I cannot support anything that will get so much publicity and touch so many people if it is a misrepresentation. There are already so many misconceptions about cancer/chemo, the world doesn’t need anymore false information. I don’t want anyone else to be as unprepared as I was for a cancer diagnosis.

With all of that said, I’ve been thinking about it a lot and both of those reasons for not reading the book are flawed. First of all, I can’t literally judge a book by its cover. I honestly don’t know anything about the story. All of what I just said is complete speculation on my part and I’m not down for that. Also, I just argued that everyone’s cancer experience is different, therefore, who am I to judge whether or not the characters/plot of this book are accurate or not? How will I ever know if John Green is dealing out “misinterpretations of cancer” if I don’t read the book? Therefore, I must read the book. At least then I will know the truth of it, either way.

Please comment if you’d like to share your perspective, but don’t spoil anything!

Stay tuned for my new review after I read The Fault In Our Stars! Hopefully will have it done by the time I get back from Ireland.

Thanks for reading!

xoxo Kathy