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.