Just Getting The Hang of It

Part IV

As most know, with the funny days there's also bad days. With bad times there's good times. We'll talk about those in the next few segments. These will be like the previous segment; my time at Millers. I will eventually get to the CHOC experience and Cedar-Sinai, but first Millers.

I wish most people would be honest when it came to having cancer. The honest truth is, well at least for me, I don't want your sympathy or pity. We don't need you to pretend you know how we feel and give us words of encouragement. Again I speak for myself. Tell me the truth. Don't tell me it's going to get better, think positive. I know that already. Tell me well that sucks, because yeah it does. Cancer isn't just fucken' kittens and rainbows, with high spirits all the time. It isn't just for shits and giggles moments. There are days of great fear, loneliness, frustration, tears, anxiety and PTSD.

You wanna know what cancer feels like? In my perspective? It's like you're drowning. You go to the beach, get in the water then a wave comes. You get up. No big deal. Then another wave hits you and you go under. Once again you get up. Catch your breath. Then another wave. Under again and this time you barely get up when you're hit with another. You bob your head out, gasping for air. Then another wave and another and another until you can't catch your breath. Before you know it, you're drowning. Every time you're fighting, struggling to reach the surface so you can finally catch your breath. To just breathe and leave the water. To see the sun in all its' glory and feel its warmth. That's been me the past 5 years. Drifting under the current just skimming the surface, but never actually pulling myself above. Another wave always seems to beat me to it. But I'm there. Just below the surface.

My first real scare was the first time I got a chemo called Peg Asparaginase, or Peg as I called it. I was told this chemo could cause reactions so the nurse has to stay behind and watch me the first several moments. For the most part I was fine. My nurse left when I showed no signs of a reaction after the alloted time. She got about halfway down the hall when it started. My throat started closing up. I began to turn red in the face along with facial swelling. I started to sweat. I pressed the nurse call light button. It was getting harder to breathe. My dad went outside the door to call for help. My little sister at the far end of the room, scared. This was her first time visiting me in the hospital since I was diagnosed. Vomiting commenced and now I really couldn't breathe. My nurse came in with one more nurse and they administered I.V Benadryl, but before that my nurse tried to explain to me that I had to be given a shot for the allergic reaction and blah, blah, blah. All this while I was vomiting. I just kept thinking oh my god, just give me the fucking shot. She gave me the injection and within minutes breathing got easier, the vomiting stopped, the Benadryl slowly crept in its' effects and I needed to use the bathroom. My nurse asked my sister to help me because they were afraid I would fall asleep on the toilet. Granted, I did for a bit, but my sister got me up and out.

A fear of mine was relapse. Hell it's still a fear today, but it doesn't bother me much these days. Dr. Zwerdling told me that my chances of remission were high. Statistically speaking chemotherapy alone is 80% effective in patients. There's those dang statistics again. He said that although chances were good, I do have a higher chance of relapse later in life because I was older. He said Leukemia was very, air quotes, "curable", but they can't say curable because there is no cure. I've relapsed 3 times after my initial diagnosis. Of that 100% I fell into the 5% with Leukemia. Out of those 5% I fell into the 20% who do not reach remission after the first treatment, and of that 20% I fell into, and don't quote me on this, the 20% who have CNS relapses or Central Nervous System relapses. In layman's terms means my leukemia came back in my spinal fluid and in the fluid around my brain. Yup, you see now where my fear of statistics begin? Can you blame a girl?

Death. Does one ever really get over this? No. Well at least not me. What I have done though is made peace with it. When you walk close to death, flirting with a line you never believed you'd cross anytime soon, you learn to accept that death is a part of life. When you're time comes, because it's inevitable, you're strangely okay with it. Does that mean I'm okay with going out now? Oh hell no. You bet your sweet monkey buns that I'm gonna go for that full life with a family, a career. I want so much more out of life and I'm going to strive for it. But if something does happen and I can't I just want my parents to know that I know I was loved. They did their part and that now it's God's turn. I want my friends to know that the most priceless gift was knowing them. For my family, the moments we shared. At the end of the day their time was all I needed. I will leave in peace. To my fiance, know that I knew unconditional love towards a person because of him. He is and always will be the better part of what made me, me. Until that day though, you all will have to deal with my ass for a long time.

My own death wasn't the only thing. Losing friends to illness was also something new to me. I lost good people I met through this journey. 3 of them I met at the same summer camp I attended in the same session. Emily Olvera was a young woman who I had the great privilege of knowing. She had been fighting cancer for most of her life it seemed. I knew if she could do it, I could. She past away choosing that she fought the good fight long enough and I can't blame her. Emily taught me that it's easy to say you'd take a bullet for your friend, but that's not your choice to make. The best thing to do for a friend when they are no longer around is to remember them at their best and to live. I repeat, it's easy to say you'd die for your friends, but living for them, for yourself, for their memory, now that's the hard part. But it's what you have to do.

Nicole Soto was another good friend I made at camp that same session. She helped me by sharing her story about a particular instance. For a long time the fear of infertility loomed in every corner. She told me about a pregnancy and loss she experienced and that even though it hurt, it gave her faith and hope about having children despite what the doctors said. I thank her for that.

Meagan Mullanix. How do I begin with someone who resonated with me so deeply. Meagan was the first friend I made at camp that year. We had a lot of the same interests and we even shared the same birthday. Her story was much like mine. I just followed her steps though a few years behind. She went through transplant and then T-Cell Immunotherapy. Before I relapsed I was always afraid that if I did a bone marrow transplant and it didn't work, that it would be the end. The last option is bone marrow transplant and that's it. When we left camp she relapsed some time later. She was one of the first to go through T-Cell Immunotherapy when the trials first started. She would talk to me about how cool and effective it was and she gave me courage and hope that there was more. That transplant wasn't the end. That if I ever got that far, which at the time I didn't, I thought there's more! The last time I spoke with her I told her about how I got into the T-Cell Immunotherapy trials. She was ecstatic for me and told me how happy she was for me and that it'll definitely be the end to all this. She gave me courage to keep seeking solutions. She passed away shortly after that. I was crushed. Now I celebrate T-cells with her in memory. My birthday holds a little more weight now. Meagan loved life until the end and now I continue doing the same. As with all my other friends who left us. As long as we carry them in our hearts, well they're never really gone.

One last fear of mine that I had was ultimately living. Now let me explain. It was February 26, 2014. Tomorrow was my first day of school. I officially would start college. Now it doesn't seem like a big deal, but to those who know me, knew that this was indeed something big for me. I wasn't able to start college right away after high school and that hurt because I had my life planned out. But like everyone told me I had to worry about my health first. Now at that time I only had a year of treatment left and was super excited and nervous. At first I tried to make any excuse to wait out on college because I had put myself in a bubble for so long since my Leukemia. I had become so accustomed to sitting on the sidelines that I didn't know how to get off the bench. Albeit I did have some excuses like how I have a miniature panic attack every time somebody sneezes because I'm afraid of having to stay in the hospital again, they were and are just that, excuses. I kept telling myself that I had reasons not to go, that I'm afraid, but the truth was it wasn't college I was afraid of. It was life.

I was ultimately afraid to live again. With my life being completely delayed and in a stalemate for a year and a half in that moment I had become afraid to move forward. I was truly terrified of starting my life again. I was paranoid about meeting people and being surrounded by others. What if I catch something from someone and I'm in the hospital all over again with fever or something stupid. It's not easy and some couldn't possibly fathom what was going on in my mind then. I cowered in fear of what cancer had left of me. I had this irrational fear of living when it's simple. I mean everyone else is doing it, right? Fact of the matter was I can't change what happened and quite frankly I don't want to. I am a different person because of what I'm going through.

Which brings me to there and even now. My nurses and my friends have pushed me forward and reluctantly on my part I had given in. I'm took my first step into the world again. That was and still is where everyone comes in. The more I thought about it the more I owed it to myself and to everyone who's ever believed in me to try. So, even now let me just say to all of you who have been with me every step of the way whether it was through reading what I've been up to on facebook or actually talking to me or praying/wishing me luck from afar. Thank you. It was and forever will be with everyone's help that I smile every day. It is with the blessing of God that I have amazing people in my life.

Now I haven't been back to college in about a year and a half, almost 2, because of relapse and treatment, but when I get there I know nothing will hold me back.