I am so excited right now! I have been invited by Project Koru, formerly Athletes for Cancer, to attend a weeklong adventure in beautiful Maui, Hawaii. There, I will be surfing, stand-up paddle boarding, canoeing, and bonding with other young adult survivors of cancer. Project Koru was started by, and is run by, adult survivors of cancer. My only obstacle is funding the airfare. You’re hearing from me because I am asking for your financial support in securing airfare, which will cost around $1,500. Cancer is expensive and quite successful in draining any finances that you have, leaving you in the red. In order to attend Project Koru’s camp in April, I have to book my flights by February 16, otherwise, my spot is surrendered.
If you followed me in the beginning of my journey, in 2[phone redacted], through my Facebook page, “Zapping Wilson,” then you know a lot about my journey already. In summary, I have a brain tumor. I was diagnosed in 2013 at the age of 32. The name of my tumor is a mouthful. Its name is Oligodendroglioma. In the community, we say “Oligo” which is pronounced just the way it looks. On my Facebook page, I was pretty forward about my treatment. Craniotomy, proton therapy (fancy radiation), and PCV chemotherapy. I tried to share with you the positive parts. Throughout my treatment, I was able to keep a great outlook. I still saw the silver lining, I still laughed, and I still joked. I was somewhat reluctant to share the hard parts of treatment and still am to an extent.
My surgery was successful in that my surgeon was able to remove 60-70% of the tumor, but to take care of that remaining 30-40% tumor, I needed radiation. The objective of the radiation was to encapsulate the remaining tumor in scar tissue to help keep the tumor from growing. My tumor will grow again in the future. It’s not a matter of hope to keep it from happening, it’s a matter of science advancing. Hope helps, though.
I went through one of the toughest types of chemo, it is called PCV. I never knew that there were different types of chemo, but there are. Mine consisted of 3 drugs; Procarbazine, CCNU, and Vincristine. The first two drugs were in pill form, the last was via infusion at the hospital. I can’t remember which, but one of the pills was shipped to my house in a box with caution tape on the
outside. Why the caution tape? Because there were two steps to abide by: 1) wear gloves and a mask before handling the medication, and 2) put that pill right in your mouth and swallow.
It was the Vincristine that was the worst on my body and psyche, I lost weight and my muscles atrophied. Mentally, it was hard knowing the exact number of days I had until the sickness came. When it came, it was bad. I couldn’t stand up without holding on to something. There was sickness coming out of my body, and not enough nutrients going in. I had to force myself to eat. PCV chemo is meant to take 9 months, but it was hard on me. I had weekly blood labs to test my blood levels. My neutrophils and platelets took hit after hit. Those hits meant that I couldn’t start my next chemo round until my counts improved. Although she was grumpy to everyone else, the lab tech and I built a rapport. I learned a lot about her life and I knew how to make her smile. She always used the butterfly needles (the tiniest needles) on me. All in all, and despite two hospitalizations due to side effects, I was able to finish chemo in 1 year and 1 week. I would say that going through chemo was the hardest part of my life so far.
Effects of my tumor, tumor location, chemo, and radiation remain with me to this day. My tumor is in my right frontal lobe of the brain. This is the part of the brain that controls executive functioning, planning, processing, memory, working memory, to name just some of the functions. My illness is an invisible one. On the outside, I look fine, the inside is a different story. To help me through my day, I rely on cue cards. I made a set of cards for each part of my day: Morning, daytime, evening, and night. In conjunction with my cards, I use a kitchen timer and another timer that I found on YouTube that shouts the remaining time so that I can do what I need to do and do it in a timely manner. Without my aids, I have literally no sense of time or urgency. I forget a lot. You know when you walk out of a room and into another to get something and then, once you’re there, you can’t remember what you were getting? That is my life 24/7. I have to scribble down my thoughts as they come to me, because if I don’t, I will lose them. Oh, I am so weary of hearing the ticking of my timers!
Because of my impaired processing, it is very difficult for me to follow along in conversations. My brain works overtime in these situations. In my mind, the flow of a conversation is this: hear what the person is saying, pause, understand the meaning of those words, pause, interpret the feeling that person is expressing with their words, pause, retrieve a response in my brain, pause, think of the words required to express my thoughts, pause, get my words out, pause, fumble with my words while speaking, pause, worry that I am not making sense. If I’m in a group setting, by the time I think of my response, many times it's too late, the conversation has shifted. It is hard to keep up.
As I said, Oligodendrogliomas are known to grow over time. Until that time, I’d like to have fun. I’m applying to camps and retreats for young adult survivors of cancer. Most of the camps have a cut-off of age 39, I’m about to turn 37 on February 15, so I don’t have too much longer to get into these camps. In order to have fun, I have to have FUNds, will you help me with that part? My deadline for booking my airfare is FEBRUARY 16, 2018. I need approximately $1,500 for the airfare, and if I can raise over this amount I will use those funds for other incidentals along the way. I am a hardcore believer in nature and the power of nature to promote the healing process. This camp will put me in touch with nature in one of her most beautiful forms. I’ve never been off the east coast, and I’ve always wanted to go to Hawaii. A month before I was invited to Project Koru, I asked Ann Marie, “do you think I’ll get to an island in my lifetime?” Will you help me get to Maui? Even a small donation goes a long way. Please share my page with any of your friends or family that you think would like to help. I am so grateful for your support. Thank you for reading my story!
Read more about Project Koru: Project Koru
- Samantha Shoemaker
- Joe Lion
- Elizabeth Smith
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