One ticket to Cancerland.

As I keep on plowing through my journey through Cancerland, I keep wondering when I will reach the end. Now, Cancerland is obviously not a very magical place with lollipops, rainbows and unicorns. Though sometimes I wish it was.

Any patient, caregiver or individual that is affected by cancer knows that it is crucial to stay focused on the small victories and celebrate the hell out of them. Its imperative to live in the moment. Just live, my motto, if you will. Also one must never quit battling.

Small Victories: When you don’t have to go to a doctor’s appointment for a straight week. In the summer, I felt like I was on a constant treadmill of doctor’s appointments. It was like I was running out of breath and I couldn’t get off or slow down the speed. I hate running. I couldn’t catch a break, it was a constant battle of at the doctor, call the doctor, talk to the nurse, and of course, repeat.

I’ll never forget my first oncology appointment. I felt suffocated. When I walked in, the words “Cancer Center” were screaming at me. I looked around feeling faint and that I sure as hell did not belong there. When Nebraska Med called the day before to schedule my appointment and to give me directions, they told me to come to the Lied Transplant Building and then to the third floor. So, I assumed I was not going to a Cancer Center of any sort. Boy, was I fucking stupid. I digress. I felt like everyone around me looked different but none of them seemed dreadfully sick it was like they almost seemed okay at the thought of being there. Being THERE, in Cancerland. Ugh. I quickly accepted this was my new life, and this place was soon going to be my new home (some days) so there was no point in getting angry with God or the world. I still feel like that was yesterday, even though it was 9 months ago.

I then laughed at the lavender sheet attached to a clipboard they gave me to fill out.

  • Step 1: Rate your Level of Distress (then there was a nice continuum for me)
  • Step 2: Please check any items that are a problem (feelings of loss, intimacy, rides to appointments, feelings of nervous or afraid, money worries, housing/lodging, changes or worries to work/school, etc)
  • Step 3: Based on the items that you checked, mark what would be helpful: (talk to a staff member, be connected a support group, connect with online resources, be mailed information, emailed information, talk with a chaplain, etc.)

Yes, I have this somewhat memorized because I am still to this day filling out this sheet. That day that I was there, I was in shock I did not want to fill this out. I felt like I was Hazel Grace on the Fault in Our Stars and really just wanted to bust out of Nebraska Med and never come back. I wanted to live in a fake world for just little while long, even if just for a second.

My small victory for that day was that I made it through my important – I laid down for the most of it because I was extremely light-headed and overwhelmed, but I made it. I left feeling like I had one badass doctor. She was willing to take on an unheard of type of cancer that has practically no research. You go Dr. Ly!

Some days, when you are going through Cancerland, you don’t have small victories. You have to start over. You  go back to the start and draw a new card. Why is it fair that someone who spends month’s, maybe years fighting a battle they didn’t pick, has return to Cancerland? Sometimes maybe return multiple times. That is ludicrous. Is it so terrible for survivors to get some fairness in their life? I knew in November something wasn’t right – I procrastinated the phone call to my oncologist because deep down inside I knew the news I was going to get. I wanted to live outside of Cancerland for a little bit longer. I did not want to get back on that damn treadmill again! But… here I am.

I only had roughly two months of “remission” which we later found out had been a total sham as I put it. That’s another story for another day. On a positive note, I am glad that it is not like my cancer continued to come back. Either way, it’s still exasperating that I STILL have the big “C” word. Ha, ha.

The light at the end of the tunnel: I keep searching for it and frankly; I am becoming more impatient. I find myself almost looking forward to my liver resection for the shear fact that I want so badly to be cancer free. Duh, who wouldn’t? After my first appointment, I was brokenhearted. 23-year-old glass half full Kayla finally realized that remission is not permanent. I remember looking at my cousin Amy and saying “None of this guarantees ANYTHING. Who’s to say after all this it WON’T come back?” Jesus. How selfish am I? I have had multiple family members go through cancer and some of them who I lost. How did I make it to that age and not realize this? The truth is, I knew that it wasn’t permeant or a guarantee – but it’s different when you aren’t in Cancerland. I was experiencing it from another side.

Reality sank in pretty quick. But, I knew I couldn’t spend my life thinking about the “what if’s” and honestly, I’m still trying to get past that sometimes. I went through a stage of trying to figure out what caused my cancer, what would have happened if I did “xyz”different, what if it was this, or that. I soon realized I was going to beat myself up over it and that there was no test and no answer. There was an imaginary wheel that was spun somewhere and it landed on me going to Cancerland. It may not be the glorious of lands, but I am there, and it is apart of me.

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Two Things That Don’t Go Together: 24 year Olds and Razors (Apparently)

Sometimes being a girl is hard. Sure, there are some perks like doing my hair, nails and going shopping (when I can find clothes that fit me). Other times I don’t want to do any of that. I won’t lie; in the summer (especially when I worked at the pool) there would be days I would go without showering. Why? Because I can. I am woman hear me roar! No? That saying doesn’t work here? Ugh.

Shaving your legs is also apparently hard. You would think after 24 years I would have that figured out. Nope. Just another reason being a grown up is slapping me in the face and I just smile every time it does and laugh because these are moments where I love my life and I would not do anything to change it.

I shower at night because I need more beauty sleep in the morning. I thrive off of beauty sleep. What girl doesn’t? I started the shower on a Tuesday night and made sure I started it a littler colder than usual because I knew I had to do the duty of shaving my legs. My rather minuscule water heater in my apartment can’t make more than a 10-minute hot shower, its pretty unfortunate. I sighed as I entered the shower thinking “Damn, sometimes being a girl really sucks.”

So, somewhere between Jake Owen telling me he couldn’t be alone with me and washing the conditioner out of my hair, I looked down and saw a pool of blood. Shit. When I say a pool of blood, I mean like a crime scene pool of blood. This was like the ‘I cut myself shaving but didn’t feel it’ type of cut. It was clearly coming from the left leg so I inspected it and thought “Meh. Pretty puny of a cut no big deal.” I finished up in the shower and it was still bleeding like I had murdered someone with my BiC Soleil disposable razor.

Sweet baby Jesus! There was a lot of blood. Now, how was I going to execute getting out of the shower? I grabbed my towel, dried off my hair and looked over and saw my other towel across the bathroom. Sweet. Just my luck. I was still bleeding husker red all over the white tub making a huge mess. Excellent, I had just added cleaning the bathroom to my list of things to do on a Tuesday night.

I grabbed some toilet paper and started to apply pressure. It was clear that I could not just put a band aide on and go about my night. The first person that came to mind throughout all this was my friend Abby. She always cuts herself shaving so she would enjoy this. However, I was in no shape to text her. By this time, I had blood all over both feet, the tub and now parts of the toilet. How in the hell does this happen from one puny little cut! This was how I was going to die. Not from cancer but from shaving my stupid legs!

15 minutes goes by, I am still bleeding. I start to multi task and I am now cleaning up the shower and applying pressure. I am pretty proud of myself. No band aides have yet have been applied. I grab my phone and send a text to Abby. Abby, being my intelligent friend who is in pharmacy school replies back to my rather dramatic text and tells me to lift my leg in the air above my heart. DUH! I used to be a lifeguard and had learned that in CPR/First aide I should have known that. Okay, Okay, Okay. How the hell am I going to do that? Picture this one: I grab even more toilet paper (I probably used up at least half a roll this night) and go into my bedroom. Take note that I am in my towel wrap. I lie on the floor ever so gracefully and put my leg in the air applying pressure. Again, I think to myself, yup, this is how I die. Loss of blood. Death by razor. After a while I check it, the blood has lessened so I sit up and throw a band aide on.

Thank fucking goodness I can finally comb my hair and put some clothes on. I spend the next couple of minuets getting my shit together and thinking about what a hot mess my life is. I head to my bedroom to get some clothes and finally I can finish up my things for the night. Oh, no, my bloody ankle has a mind of its own. As I’m stepping over blankets, clothes and pillows (it was like playing hot lava) I feel something. Yup. Blood. I look down and think SHIT and run back to the bathroom perfectly missing and winning at hot lava. Score.

I got back to the bathroom but my rug had not survived. I snapped a picture of it and sent it to Abby. I of course shared a few choice words. Back to laying on the floor it was. At this point it had almost been an hour since the incident. I lay there for another 10 minutes and I am not really sure that was even doing anything! I dug around in my bathroom and was able to find gauze and tape and I wrapped several layers or that and then secured it with a giant band aide. After two hours, the blood had finally stopped. This is when I really should have poured myself a glass of wine. Why did I not think of that earlier? What a perfect reason to drink wine! Not that I NEED a reason…

I seem to always find myself in strange situations like this and I’m not really sure why. I’m beginning to think it’s because I handle them well or maybe it’s because I usually just laugh about it. As this was happening, I was just laying on the floor texting Abby laughing. While I was lying there, I texted her saying she would die if she could see me. I think that if anyone could have, they would have shared a good laugh. Hopefully, since you were not there, reading it gave you the same affect 🙂

My piece of advice: Watch out for those disposable razors – they’ll get ya!

Laughing Off Cancer: (No Research Proven…Yet)

I have always described myself as a laugher.  I can’t even count the amount of times where I randomly start laughing because I think of something that may have happened the day before, an hour ago, or last week. I laugh at myself. I laugh with others. I enjoy laughing until my stomach hurts. If it was possible to have 6-pack abs from laughing, I would.
When I first got diagnosed, I actually wanted to laugh after I cried. For any of you who know my luck of injuries and health problems you can probably imagine why I wanted to laugh. I just had a shoulder repair the October before and I have had 3 hip surgeries. It’s almost like people expect me to have an injury. So, after the initial shock wore off, I did kind of laugh and think to myself “Yup, this would happen to me.”

I then started to think about a movie I saw when I was in elementary school, Bubble boy. Maybe that is what I needed! Yes, a giant bubble. That could protect me from anything. This joke was not original; I actually heard this several times after I got diagnosed. I laughed every time someone mentioned putting me in a plastic bubble. I was glad that everyone else noticed the humor in it all like I did.

I knew sitting around crying about having a rare cancer that no one knew anything about was going to get me nowhere. So, I took light in it all and encouraged others to take light in the situation as well. Of course, when I said or did certain things, I did get strange looks and I had to explain to people that yes, I did have a warped sense of humor. But, really, who is going to judge the girl with cancer?

I think one of the best comments I ever made was a text message to one of my best friends, Kristen. A little back-story, Kristen and I share the same sense of humor with almost everything. She is always there to share highly inappropriate jokes with me and she shares my sarcasm. About two weeks after I found out, I sent Kristen a text and said, “I just got on WebMD and typed in my symptoms, it says I have cancer. Should I see a doctor?” Though we were not together, I laughed hysterically before sending the text. I knew she would find it just as funny and she did. We still laugh about this today and every time it gets a little bit funnier.

This was the moment where Kristen and I started a playful banter of what I will refer to KJ cancerisms. Over the summer, Kristen was in Pennsylvania working at a camp and though she was many miles away, she continued to support me and be by my side thorough my fight by writing me letters and sending me cards. Snail mail is not dead my friends! I would get numerous cards addressed to “Princess KJ” and on the inside there would be cards with the words “FUCK CANCER” all over it. I also once got a card with a letter about fixing my liver with duct tape. We actually texted back and fourth for about an hour planning out how instead of me having treatment, she would come home, do a surgery and tape my liver up with duct tape and magically heal me from EHE. Of course, it was all a joke. Laughter is the best medicine – this is the perfect example!

Then, there was a time we were at DJ’s dug out downtown Omaha. I had come late and it was the night of a Husker game so it was really busy and there was a line. Kristen was making jokes about how I should use the “cancer card” to get in. Which we both know I would never do. She likes to joke about how if I am going to have cancer, I should use it to my advantage. Again, another KJ cancerism. There were 2 people in front of us waiting to get in. Kristen was making up a story about how I should just go up to the bouncer, tell him my story and get us in. We were both laughing about how funny that would be, but I would never have the balls to do it. Well, the guy in front of us was eavesdropping on us! Let me clarify in front of: He was several, several feet in front of us and we were actually not talking that loud. Yes, I know that is hard to believe. I am sure he thought Kristen and I were super attractive (obviously) and he just wanted to know all the philosophical things we were chatting about. Well, jokes on you buddy. Anyway, when the time came to let the next two people in, he awkwardly turned around and said “Sorry girls” and stared right at me. I wasn’t even mortified. Okay, I was a little embarrassed but Kristen just about pissed her pants laughing (I hope she reads this). Again, laughter is the best medicine. I will forever remember that night.

I am so thankful that my friends get me. Of course, if they didn’t I probably wouldn’t be friends with them. They understand my warped sense of humor and they feed it right back. For instance, when I was at dinner with my best friend Abby. She asked to have drink of my water and then she said, “I hope you didn’t spread your cancer germs on it because I heard that shit is contagious.” I was so proud of that quote that came out of her mouth.  It was like I have taught her so well throughout this journey. That was a solid KJ cancerism.

There have been so many other things that I’ve had to take light in. For example, the time when I finally had to accept the fact that I have indeed lost about 35 pounds and that my body had changed drastically. I went to Victoria’s Secret to get fitted for a new bra and I explained to the nice, bubbly sales associate that I had lost about 35 pounds and that I had no idea what size I was anymore. I knew shit was going to get awkward real quick. She looked at me with this big smile and said “Oh my gosh! Congratulations!” My Mom looked at me with this awkward smile and I shot her a look like, just go with it. I had learned by this point that it’s much easier for me to feel awkward than making others feel bad. I was not about to tell her it was because I have cancer and make her feel like she was congratulating me on cancer. So, I said thanks. Then, I started thinking crap any normal girl is going to ask how in the hell did you lose that much weight. Go figure. Classic girl move, she did. I was not going to make this innocent, dark haired girl feel bad. I told her that I had just been feeling under the weather and luckily she didn’t press. I tried to imply I had mono. Close enough, right? That’s about how most of my shopping experiences go. People are confused why I am trying on a plethora of sizes, and I explain I have lost a lot weight and they think it is a huge accomplishment. I do laugh about it though, because it is so awkward how could you not? I should really come up with a better story. One that is almost bizarre to believe but people don’t want to question it because they would look like total jerk faces if they did. I tried really hard to think of an idea to insert here and I currently have nothing. I am also a terrible liar so that would never work.

The other day while trying on pants at the Loft I told my Mom that I felt like Jared from the Subway commercials when he holds up his fat pants. I am pretty sure there were other people in the fitting rooms while I was doing this. They probably thought I was bat shit crazy. But, yes, that is how all pants fit me. I have to make my shopping experiences fun somehow.

There are so many more KJ cancerisms I could share, and maybe someday I will share more. They have given me a lot of laughs and brought a lot of laughs to my friends and family. I am sure a lot of people have questioned if there is something else wrong with me, which I don’t know, maybe there is? If that something is I have a problem with laughing and maybe taking things too lightly, then yes. Like I said before, sitting around being sad about the cards I got dealt was not going to do anything for me. I knew from day one I need to be positivestrong and laugh off the cancer. Which is exactly what I have done (with the help of my doctors) and I’m going to continue to do!