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

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

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

Monday

Tonight, I am tired. Tired because I just kicked my own butt at the gym! It has been a challenge to get myself back in to a workout routine after lying in bed for so long, but I finally feel like I’m getting somewhere. And it feels amazing!

I’ve made a goal for myself this week to post something every day. I hope to be able to address real topics in my posts in the future, but for this week I am focusing on getting in the habit of posting.

I spent the better parts of my day today with Val. We went on our favorite long walk and I came up with some great ideas for TKD content. Being that it was actually nice outside today, I decided to take Val over to the dog park. There’s a really great one in our area that has a pretty big area designated to small and shy dogs, both of which are my dog. On the short walk over to the dog area from the parking lot, I ran into a nice woman who wondered about Val’s breed. She asked me specifically if Val was very good at being alone during the day. This just so happens to be the only thing that Val is absolutely horrible at. I had to explain to her that Val wasn’t a very good example of the breed because I got her to help me through chemo, so we have always been together all day, resulting in separation anxiety (for both of us).

I always love these little conversations that I have with complete strangers, where I’m forced to reveal that I am battling cancer. Everyone reacts differently to hearing it, but the best is when people react like this woman today. It’s like they immediately drop the stranger pretenses and join your army of supporters. They usually ask how things are going and I reassure them that I am doing great, and then they finish off by saying something encouraging like, “stay strong” or “keep up the fight” or something like that. Today, the woman said, “I hope that you have a great present and future.”

This reminds me of another sort of similar story. Sometime amidst all of my intense chemo I felt well enough to go shopping with my Godmother, Beckie. We were in one of Beckie’s favorite stores, chatting with one of the managers who knew Beckie, while she checked out. Somehow we got onto the topic of my cancer. Meanwhile this grumpy looking woman came to stand in line behind us. Beckie’s purchase was taking a while and we were being sort of leisurely since we knew the woman helping us. I figured this would only make the grumpy lady more angry. Finally, a second cashier came to help the grumpy lady. Grumpy finished getting checked out before us, and then she did something that shocked me. She grabbed my arm and said “stay strong” and then she turned and walked away. It was AWESOME. I will never forget that.

It’s so cool that people can relate to me, and to my struggle, like that. I feel so blessed to be able to experience these little moments of connection with people and I hope that they know how much of an impact that there words have.

Hope you all enjoyed these little stories, hopefully tomorrow I’ll be able to come up with something a little more organized!

xoxo Kathy