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?

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

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

Surgery and Life Update

Hello all of you beautiful people,

As some of you know I had surgery on both of my hips to help with my Avascular Necrosis (AVN) this past Wednesday. AVN is caused by low blood flow to a bone or joint, I have it in both of my femoral heads. In my case it was caused by high dose steroid use during chemotherapy. The low blood flow causes the bone to die and become misshapen which results in a lot of pain! The surgeon drilled holes through my bones to break up the dead bone tissue and allow more blood to reach the area, hopefully resulting in new tissue growth and no more AVN!

AVNsurgery

 

AVNpreop

The surgery went well and I didn’t even have to spend the night in the hospital like we originally thought (thank god). I kicked all of the pain meds after two days and have been able to get around fairly well on my crutches. I even went shopping yesterday! I am so pleased as I have a lot of exciting stuff coming up in the next few weeks and a lot of it was dependent on how I’d be feeling after this procedure!

Next week I will be participating in a panel at the SMAHRT (Social Media and Adolescent Health Research Team) Conference put on by the Seattle Children’s Research Institute. The next day, I’m jumping on a plane and heading to a camp for young adult cancer patients in Arizona. The camp is being put on by the Dream Street Foundation and it is at a spa! To be honest, I’m a little nervous because there is supposed to be a lot of heartfelt talks and group therapy which is something I have been avoiding for months. I’m hoping to have a great experience and meet some cool people, and if all else fails, at least its at a spa!

Lastly, I am finally moving back to LA! Most of you know that I was living in LA and going to design school before I got sick. Most of you probably don’t know that since I got back and began chemo, all I’ve been trying to do is get back there! The thought of getting back to LA and back to my friends and my life was what got me through the dark times in my chemotherapy. It’s taken me longer than I thought it would, but I never gave up and now I’m finally going to be moving back! I can’t wait for August to start and for me to start taking my life back for real!

Look out world!

xoxo Kathy

PS I’ll be continuing my Leukoenceph. story this week!! Click here for part 1 or part 2

Post Port Removal Portlessness

***Warning, the second image is of the procedure site, therefore a little bloody***hospitalgownswagger

One year and one week later and I am now port free! The surgery went well and after a day of recovery spent sleeping off anesthesia and pain medication, I am feeling like my normal self again. The pain was much less than getting the port put in, in fact today I see no need for meds and only feel a bit of discomfort around the area.

If you watched the video I posted the other day (click here), then you know that I was feeling a little apprehensive about the whole procedure. There were two reasons for this, one being that I did not have the best team of doctors/nurses when I got the port put in, and the other being more based on superstition.

Fortunately for this procedure I had an amazing medical support team. Everyone was so kind and comforting. If I’ve learned anything through this experience, its that you have to trust your medical team. Having faith in the people who are taking care of you just makes the whole experience more tolerable. Sometimes the only thing that gets you through the pokes, prods and constant hospital visits is knowing that your going to get to see your favorite nurse/doctor, etc. Most of my nerves subsided after I met the anesthesiologists and nurses who would be with me during the surgery.

stabwound

They were definitely nothing like the surgery team I’d had the previous year who seemed grumpy and upset with me, the patient, throughout the whole process. I specifically remember feeling anxious when I entered the OR, anxiety which only increased as I could hear my heart rate steadily increasing on the monitor. Instead of some kind words from the people around me, the anesthesiologist told me to “stop freaking out.” This was the last thing I heard before I fell asleep. Things were no better when I woke up several hours later to the same man berating me for gagging as they pulled the intubation tube out of my throat. These things might not have upset me so much had this not been my first procedure after being diagnosed with cancer a few days earlier.

Having had this happen, I am so thankful that the rest of my experiences, including my removal process, have been with some of the most amazing, kind and loving medical staff on the planet.

My other fears for getting my port removed where quite silly. I was beginning to tie my port and it’s placement in my chest to my remission status. Any apprehensions that I had for getting the port taken out which stemmed from these thoughts and fears was illogical, and I knew that. This is why I went ahead and removed the port. I knew that I couldn’t make this decision out of fear. My cancer will not come back because my port is gone. If it comes back it will be because that is what is meant to be. Keeping/removing my port will not change that.

All in all, I am glad that I did not feed these fears by cancelling the procedure. I feel the same without it as I did with it, happy and healthy!

Hope you all are having a lovely start to your week!

xoxo Kathy