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

Screen Shot 2015-11-04 at 3.26.08 PM

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?

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


Photo on 11-14-14 at 9.50 PM #2Photo on 11-14-14 at 9.51 PM #2

 

leukoencephalopathyI’ll never forget waking up that morning. To be honest, I don’t even know what day of the week it was, but I know it was a week day because mom was getting ready for work. My cousin, Matthew, was visiting. I don’t remember him arriving, how long he’d already been staying with us, but I know that he was there that morning.

I woke up. It felt reasonably like any other summer morning in Washington. With a fuzzy mind and squinty eyes that had not yet adjusted to the bright light coming through the window, I reached for my cell phone to see what time it was. My cell phone, which I always placed on the same ledge next to my bed. The same spot where I reached for it every morning, with the same squinty eyes and the same left arm that I’ve always reached for it with. However, on this particular morning, the hand on the end of that arm didn’t work. I reached over to grab my cell phone and my left arm just flopped down and hit the side of the mattress.

It was at this moment that I realized two things. Something was terribly wrong and I direly needed to pee. I rushed to the bathroom and relieved myself which was quite the struggle with one working arm. I vividly remember holding my left wrist with my right hand and swatting the toilet paper roll to get it to unravel, with my left hand just flopping up and down. In these panicked moments, I began to shout for my mom. At first I could make the words, but slowly they turned to noises. I had staggered into my parents bedroom where my mom was getting ready for work. It didn’t take long for my mom to realize that there was something devastatingly wrong happening. It was at this point that I began to hurl.

Nothing came up. I ran (“stumbled”) back in to the  bathroom where I sat in front of the toilet and heaved uncontrollably. I remember my cousin was there because my mom told him to stand in the hall and watch me while she called the hospital. This next part kills me. I may or may not have been crying, whimpering or howling since I was literally lost for words when my mom came back to tell me to get in the car. Yeah, we had to drive during morning traffic to the hospital while my brain was disintegrating. I’ve never been in an ambulance before, but if I had to pick a time in my life where I probably should have been, it would be that morning.

I don’t remember much of the ride besides the occasional dry heave into the pink bucket on my lap. I guess I was sleeping, though I think of it more like slipping in and out of conscienceless. We pulled up to the valet and one of the guys helped me in to a wheelchair. He could tell there was something seriously f*cked up going on so he pushed my chair all the way back to clinic. They usually don’t even get you a chair. I didn’t have to wait at clinic, it was like a miracle. In fact, they took me back to my own private room which for some reason I remember thinking was a supply closet. Looking back now, it was probably some secret emergency-ready clinic room with tons of supplies in it in case some kid has a crazy reaction to a medication, go figure.

This time I was fully aware, or as aware as I could be, of the nurses shoving my favorite NG tube down my nose and accessing my port. I’m actually really impressed by their ability to do it while I was using every ounce of my limited control to fight them off. After that, things get fuzzy. I have flashes of memory that remind me just how disturbing the next two days of unconsciousness really were. I’m glad that I don’t remember the entire ordeal as the little patches that I retained are scarring enough to last me for the rest of my days. I feel worse for my parents, who where there with me the whole time, watching me suffer and not being able to do anything to help.

This next part is a little bit weird for me to tell. I honestly don’t know if the way that I remember these things is the way that they actually happened. After all, my brain was inflamed.

The first thing I remember is not being able to swallow. I knew that I had been admitted to one of the oncology floor’s in-patient rooms. I was desperately trying to communicate that I could not swallow but was unable to form words. I recall trying to focus all of my energy on writing what I wanted to tell the nurses but not being able to. I must have somehow communicated to them because I then remember there being a suction device like they have at a dentist office. However I couldn’t effectively communicate when I needed the sucking. I also remember that I couldn’t control my jaw. It would shoot over to one side, the right side, and seemingly get stuck there, as if my lower molars were caught on the outside of my upper molars. Then there would be so much pressure that it would snap back over and in to place, and repeat. I still hate the feeling/sound of grinding/clicking teeth.

Throughout all of my uncurious inflammation I was wailing. A meaningless shriek that meant nothing and that I could not control. I believe the sound still haunts my mother to this day. Something else equally as haunting was when I tried to communicate to her that I wished I was dead. I don’t particularly remember making a gun out of my hand and pointing it at my head, but the therapist waiting for me when I woke up told me that it was so. I do however, remember sitting on the edge of my bed and frantically trying to tell her something. I tried to write it on the note pad but could not. I was so frustrated that I just threw it and waved my hands around, I was probably crying. Then I focused all of my energy on forming these words, one at a time. I said, “I. Don’t. Want. To. Be. A. Retard.”

Not my finest hour. Of course, I didn’t and don’t mean to say the word retard in any negative connotation. I wasn’t in the right state of mind and it is not a term or word that I use lightly. What you must understand when reading this is that what I was in those two days was nothing short of a special needs person. And what I really meant in saying that was that if this was permanent, then I would rather die. And I had to get it across to her so that she would know that was my wish. I don’t mean to denote any special needs individuals or caretakers by saying these things. My own personal experience and choice does not reflect how I feel about special needs individuals whether they were born that way or not. To each there own. But for me, someone who has always been in control of her life, I couldn’t bare to carry on knowing just exactly what I would be missing.

I’ve had plenty of time to think on the matter. And I look at things like assisted suicide differently now. I am not now nor have I ever been suicidal except for in this instance. As soon as I came to and the inflammation had gone I didn’t even think on it. I didn’t even remember that I said that until the therapist brought it up to me. That is how much, in my normal life, that I don’t wish to die. But I think, if you put yourself in my shoes for a moment, and imagine one day, after living your whole life with a perfectly functioning and working body and mind, it just didn’t work. It didn’t work so much that you couldn’t do anything but watch the world go on around you, all the while knowing how ridiculous you looked and acted and felt. And there was nothing that you could do about it. If you could see it like that, then maybe you could understand.

Sometimes, people get in very bad accidents but they don’t die. They’re just different, handicapped. They might even end up in a similar state to mine. And plenty of them just live on, and live through it. Those people are stronger than me. They know what they have lost but they keep on anyway. Some of you might think that I sound selfish. That’s what suicide usually is, selfish. But I just think, I think in some cases, cases like this, that it isn’t. Because it couldn’t have been better for my mom and dad to have me, if all that I was is a shrieking, jaw clicking, drooling shell of the daughter that they really loved. But if I didn’t want it, they never would have been able to let me go.

Phew.

Luckily, things never got to that point. I remember requesting pain meds, and by that I mean a nurse suggested that I might be in pain in which case I replied yes (or moan) only so that I could get pain meds which I hoped would knock me out so that I could finally have some relief. It worked.

I’d say that’s enough for one emotionally draining blog post, wouldn’t you? I’ll finish up next week!

xoxo Kathy

Leukoencephalopathy1It has been a little longer than usual since my last post. There have been a lot of things going on, a lot of good and developmental projects that have been taking up my time and creative energy. I have also been working on a special post that has been a little bit difficult for me to complete.

I would hope that it comes off pretty evidently that I am a positive, strong, passionate and genuinely happy person but it would be a mistake for someone to think that I was always that way. I may have always been positive, strong, passionate and happy but I didn’t really understand myself, who I was or how to use and appreciate all of these truths until I lost myself. And when I found myself again I was different, better than I was before, I was the person that I am now, today, and hopefully will remain for the rest of my life. Now, I would like to share with you all the story of how I died and came back to life.

I have decided to make this post in several parts, it is a lot for me to relive all at once and I’d imagine that it would be a lot for a reader to take in as well. There are also some delicate topics that I need to discuss and I want be sure to take the proper amount of time and care to translate them appropriately.

Just over a year ago this photograph was taken of me in the hospital. This image documents the most disturbing time in my life..

Deathotrexate

..and here is the first part of the story:

I’d been planning a trip home, to Los Angeles, to visit my best friends. The tickets were purchased and all that I needed were some decent looking blood counts and a check off from my doctor. I wasn’t feeling well the morning of my appointment but that wasn’t exactly newsworthy, I mean I am a cancer patient. Things only got worse when the doctor told me I wasn’t going to be able to go on the trip I’d been planning. My counts just weren’t going to be where they needed to be and it would be too risky. Now, I’m not one to cry but I was pissed off, and if there’s anything that can bring me to tears its frustration. I rolled over on the examination table so I was facing the wall, tucked my legs knees up to my chest and quietly let a few tears out while waiting to be escorted to the procedure room.

I was still upset when they came to get me. I walked in to the room and laid down on the gurney, it was my last week of a four week cycle of spinal infusions. Comfortable with the routine at this point, I welcomed the anesthesia and the brief moments of peaceful and deep sleep that awaited me. But this was not just another routine back poke.

I woke up in the recovery room. Everything seemed normal at first, but I couldn’t shake the fogginess of sleep from my eyes. I didn’t seem to be able to focus my eyes on anything. No stranger to unusual body sensations, I tried to calm myself down, telling myself that it was just a sensation and it would pass. But it wasn’t passing. Our scheduler, Camie, came by and introduced herself. I’d heard of her and my mother had met her but I had not until this moment. When she walked away I laid back down on the gurney and realized that I had no recollection of what she looked like. I had just looked at this woman and had a brief conversation with her but I couldn’t remember what she looked like at all. That’s when I knew something was wrong, really wrong.

I turned to my mother and told her that their was something not right, I didn’t know what but something was not right and I needed a doctor. I tried to explain what happened but they doctors didn’t seem to be understanding. It just seemed like the cognitive functions of my brain weren’t working, my eyes weren’t working. After that all I remember is patches. I really had to go pee but I couldn’t go. They were trying to get me to take some medicine but I wouldn’t or couldn’t do it. I vaguely remember going in for the MRI and CT scans. The next time I was fully cognizant was later that night when I woke up in a hospital room with an NG tube shoved down my nose. I quickly decided that those were the worst things ever. Have you ever swallowed a bit of spaghetti and had a long piece of noodle get caught going down your throat, and then you kind of have to pull it back up from the end that’s still in your mouth? Yeah, children live weeks on end like that.

And the party didn’t stop there, having not yet decided what was wrong with me, my doctors decided to give me a dose of Vancomycin in case of a blood stream infection. While my pump was administering the dose my mom took the time to fill me in on what exactly had happened while I was unconscious. Specifically my constant whining about needing to use the restroom and the nursing staff’s various attempts to allow me to do so. None of which actually included taking me to the bathroom which is why I refused all of them (or so I imagine as I was unconcious). While we were talking I began to feel very hot and itchy, an allergic reaction to the antibiotic running through my veins (as if I hadn’t had enough!). The nurse came in to give me a dose of Benadryl to counteract the effects, consequentially knocking me out once more.

~To be continued~

This is only the first day of a two week long nightmare that will be with me for the rest of my life. Check back for part 2 later this week!

xoxo Kathy

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