For the past 5 years my life has been all about cancer, from age 12 to 17. Not saying that is a bad thing, I am grateful to those I have met along this journey. An to be able to stand here today, at almost 18 years old and tell my story. But, I never got a chance to sit down and figure out I was and what I wanted. Cancer was apart of my life, but my life shouldn’t and will NOT revolve around it. Now it is time to sit down and figure who Alyssa Marie is. I am not Alyssa the cancer patient or Alyssa the girl who had cancer. I am Alyssa, the girl with high hopes for herself. The girl who is reaching for the stars. The girl with amazing dreams and goals. Now its time to figure out who I truly am. I can’t wait to see what this chapter holds and where it’ll take me.
The word survivor, a word I can’t stand. To me it has a negative connotation added to it. People always say, “oh you are a survivor, you beat this monster” or “you made it”. But all I can think about is all of those who didn’t “survive”. To me the word survivor implies that I accomplished something that those who lost their fight couldn’t. I am very fortunate to be here and to have “won” my fight but lets not forget those who didn’t make it. I am one of those who or fortunate to be here, and I thank God for that everyday. But I didn’t fight any more or less than those who aren’t here with us did.
Okay, so I have decided in the past week to make a very important decision: i am stopping my medication, ALL OF THEM (the last few narcotics). I have done this many times before on my own accord with previous heavy narcotics I have been on. What prompted this decision is the fact that I already don’t take them the way that I should because I forget and we have weened me down pretty low as is. It seems like this weening process has been taking forever and I am over it. I didn’t want to continue with that, so my only other option was to go ‘cold turkey’ and just stop and that ended up being the decision I made. I felt as if with God by my side I am strong enough to do it. Now it isn’t easy, let me tell ya. I have woken up with shakes every morning for the past week, my breathing feels uneasy and I have the worst sensation of pain running through my body. You have no idea how this is for me, how many times I just wanted to reach for the morphine for relief. But I decided to stick with it because that is my only way to get off of it since we having some issues with getting a prescription written and I was running out of medication.
I felt so dependent on them. Even when I didn’t necessarily need them I felt as I had to have them. I hated the fact that they changed my mood and how I acted, as soon as I took a morphine, everything changed. An being in school made it even harder, I walk through halls half present and half out of it. It made it hard to focus on my school work and be present/participate in school. I decided enough was enough, I control my life. Changes needed to be made and I needed to do it on my own accord. If I was forced into this then I would not have been able to do it, the motivation and determination wouldn’t be there and i’d slip back into that cycle of “i need, i need, i need”. Ultimately this was my choice and I feel like it was something that needed to be done.
As of 08 February 2018, I am out of the wheelchair. My recovery from surgery has been going amazing and I prayed about it. An honestly, I felt as if I was ready to start walking outside of the house. February 8th, was my first day walking inside of the school for the whole day. To me its a huge accomplishment considering how big my high school is. I honestly felt like the wheelchair was enabling me too much because I would wake up and be straight in it for a entire school day and then come home and sit down and do homework and then go to bed. My day had very little movement of my legs in it. I felt like it was making me lazy as if I could sit back and relax because I was in the chair an just had surgery. That was honestly the mindset I was falling into, unintentionally.
It has now been almost a week and a half of me walking in school. An it is going great! I am feeling wonderful and my legs are getting good exercise. I still use the elevator at school because I don’t want to push it but it is amazing!
Today is my 5 year anniversary for the day I was diagnosed! It is so crazy to me to look back and see how far I’ve come. I remember the days where I used to think I wouldn’t make it or couldn’t do it anymore. Thanks to God and my amazing support system I am here today. I carry the scars of what I went through and I am proud. Proud to tell my story and proud to be able to shine a light on Childhood Cancer.
So like I have said before, my surgery went well, but afterwards, I ended up with an abscess. Which than caused my whole incision to open up. I was put on antibiotics to clear that up which it did, thank God. After that whole thing happened, my incision had trouble healing back up. So we were on watch for that and were going to the doctor every 1-2 weeks. Well now, my incision is looking good and the bone graft that they did is settling in well.
It is always nerve wracking and scary when you go in for surgery because there can always be complications. I thank God for keeping his arms around all the doctors, nurses, and anyone who came in contact with me. He knew what he was doing when he had all those doctors and nurses lined up to work on.
I have been doing weight bearing and walking around quite a bit, no more walker/crutches or full leg brace. Although, I am still in a wheelchair during school because my mom doesn’t want me doing a full day of walking yet. Maybe in another month or so I can start trying to do a full day of walking since I can walk around in the grocery store now. Its all about timing. I give it up to God and when he thinks I am ready he will let us know.
I want to say a huge thank you my new friend Denise Truscello. My family and I had a photo shoot with her for Evening of Hope (she is an amazing photographer by the way). I ended up talking to her about how I take fashion and photography in school right now. Also, how I wanted to major in fashion with a minor in photography because they kind of go hand in hand. We then had a long conversation about photography and cameras. Towards the end of our conversation, she offered to give me a camera. Which I was in shock and so thankful because cameras are pretty expensive. We met up about a week later to get the camera and have a quick lesson on how to use the different aspects of it. An not only did she give me a camera, but she gave me a flash for it, SD cards and flash drives, an entire lighting kit, camera bag, a monopod, and more. It was such a blessing. I then got to take a couple pictures of her and her client that was there at the time (which I think came out great!). I am gonna start taking lots of photos and she is going to help me build my portfolio. I am so thankful to her for all of the stuff she gave me! An I can’t wait to start displaying my work! God is so good!!!!
Since before school went on break, my best friend Hailey has been saying that she is going to come visit me after surgery. Well, yesterday 12/27, she did! She asked for my address again a couple days before, but she wouldn’t tell me when she was coming. Yesterday around 10ish she knocked on my door asking if I was awake. I was wide awake after that, it definitely made my day! She brought me flowers and takis. She then painted my nails, we just chatted, and watched TV and movies together. As well as, dabbled with some makeup. It was just amazing having her here! She even bought pizza, which she didn’t have to do. We pretty mush spent half the day together from 10-3. Honestly, I just want to thank you so so so much Hailey, for coming to see me! You are an amazing friend. You brightened up my day!
Sorry I have been absent for a couple days, I have been recovering from surgery. By the way, everything went amazing! For those who don’t know why I had surgery, I will explain..
Because of the cancer treatments and steroids they gave me, I got something called a vascular necrosis. Which essentially means my bones are dying. I have it in both my knees and my shoulder. In 2015, we had a bone graph done on my right knee. This winter, they did the exact same thing on my left knee. And then, my shoulder ended up collapsing so we had to replace it in 2016.
Back to the surgery update.. I have been doing well since surgery. I am on a pain plan to help combat surgery pain as well as my regular pain. Although, my foot and my ankle are pretty swollen. We talked to the doctor and we are elevating it in a different way now that should help as well as icing. If it gets worse though, we will go to the ER straight away. But as of right now, we are working with our first plan.
Another thing I wanted to say was thank you for all your guys constant prayers and support. I feel as your guys love! Thank you so so so much! PLEASE continue to pray for a speedy recovery and healing.
Taylor Hammond, my best friend and my little brother, you are gone but will never be forgotten. The way you lived your life was truly inspiring. Even on your roughest days you had a smile on your face. You had such a positive outlook on the world. I hope to live my life the way you did, never taking for granted everyday I am given.
I remember the conversations we had and the laughs we shared, I will cherish those moments forever. You had such a big heart and a larger than life personality. It hurts that your gone, but I know that you aren’t suffering anymore. I now have another angel to watch over me. I cry because I loved you.
I am tired of losing my friends to this monster called childhood cancer. An like all the others, I don’t want Taylor to JUST be apart of the “this many kids lost their battle this year” statistic. I want this to be fixed, we need to a cure. We haven’t been fighting all these years for nothing. His life and legacy means something. ALL of these kids lives mean something. We will keep fighting for a cure in their honor. And keep fighting for those who are currently in battle.