Survived, Not Survivor.

As we draw an end to September, Childhood Cancer Awareness month, I would like you to read a raw and candid account by a friend who had a brain tumor. It is my honor to host Thalon Riordan on my blog. As you read, you may have some thoughts/observations. We would love to hear them. Please share for continued awareness in hopes for a cure and/or less toxic treatments for children who have cancer.
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Ah, September. As a kid it was a month of a new school year (the real New Year for me, with far more realistic goals), a fresh start, and after a summer of intermittent boredom and wishing it would never end, something to finally do. As an adult, starting my final year of college for my BA, it still is.

Except, the September of 2004, the first September after I was diagnosed with a brain tumor, it became something else. It became Childhood Cancer Awareness month. August 20, 2006, it became something else too. That was the day that I lost the very first person in my life. The very first experience I’d ever had with death. And he was a little boy, not quite a year younger than me, also with brain cancer. His name was Zachary Camarda. He was the first cancer friend I had ever made. I met him my first day of treatment. And because he was there for so many of those days, he fell into that black hole of trauma, the one that blocks the memories to block the pain, so, for so long all I could remember, was August 20, his name, and the anguish I felt the day he died. September was Remembrance Month for me as well.

December 30, 2006, Amanda Bunch died too. She wasn’t always in the play room with me like Zach was, so I wasn’t as close to her. She also had been in remission at one point, and the biggest kicker is that she died at 17. She was someone I aspired to be. If she could survive, so could I, right? I remember going to an ACCOIN parade, at the time called Candlelighters,and she gave me a sign (That she had been carrying for herself) that said “Survivor”. I told her, “I can’t take this, I’m not a survivor yet.” She said, “You’ve always been a survivor. Now take it.” I’m still not convinced that I didn’t somehow take her survival away from her too.

I was diagnosed with a Brain Tumor November 28, 2003. The day after Thanksgiving. December 1, I was taken in for a “debulking” surgery for the tumor. They took out 80%. The remaining 20% is 2.2cm by 2.2cm, if my most recent MRI results are anything to go by.

Now I’m 21, married, in my last year of my Bachelor’s, and on track to get my Master’s. I’m also a Childhood Cancer Survivor. And I have PTSD. “Have you grieved yet? For Zach, for Amanda, for your lost childhood?” My therapist asked me that in my last session. The answer is probably no. I don’t know how to. And after nearly 2/3 of my life being this, I don’t know if I want to. I’m ripping open a wound that’s been festering for 13 years. Poking at it, digging it out. It’s so deep I have to wonder if there is a chance it’ll ever heal.

One thing is certain though. I hate being called a survivor. Like everything is past tense. Like I did such a great job managing to not die during chemo, so “hey! Here’s your Purple Heart, your Gold Ribbon, your Survivor Beads! Thank you have a nice day bye now…”. I hated being called everyone’s hero. I hate that being a survivor is romanticized and put in books and movies as some heart wrenching plot line. I hate that people think Survivor seems to synonymous with Over. But that is so, so, so very wrong. The chemo was the easy part to be honest. I laid there. I slept when I needed to. Played when I wanted to. Didn’t worry or care about anything except tomorrow.

The surviving is happening now. In learning to adult, and I don’t mean get regular checkups and pay your bills, I mean get regularly checked for the cancer that may or may not ever show up again. I mean doing the phone calls to have pediatric records sent to the adult oncologist because suddenly that’s your responsibility not the hospital’s. I mean figuring out how to manage your panic attacks for those appointments because your husband can’t take the time off, and pretty soon, your dad can’t either.

And my God how I feel so ridiculous now. I have panic attacks and can’t talk about these things except to someone who’s paid to understand, in a small room and non-judgmental walls. One Survivor friend was diagnosed with cancer again. Two have actual diseases caused by their treatments. And I have PTSD.

“Oh Thalon, don’t be so hard on yourself! You have other things going on too!” Well, yea. Muscle weakness, almost no fine motor control in my left hand, scoliosis, chronic pain, fatigue, and migraines… But my lungs aren’t killing me. My heart isn’t failing me. My body isn’t attacking itself.

And that’s where it is. The end-all-be-all of this Survivor nonsense. The guilt. The wondering why the hell I made it. The honest-to-God belief that Zach or Amanda could, and would be doing so much more, so much better things with the lives they never got to live. Wondering if I’m doing them proud and living to the fullest, just like I promised them I would. Wanting to get closer to Rebecca and Drea, Sammy, and so many other survivors but being terrified of losing them too.

Being a Survivor isn’t beautiful. It’s not romantic. It’s not heroic. And most of all, it’s not all that I am. I’m a wife. An aunt. A best friend. A sister. A strong, powerful force of a woman. And I also just happened to have survived cancer.
-Thalon Riordan

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Childhood Cancer/late effects

Just three fighters who all had cancer as children.

Sept is Childhood cancer awareness month. It’s a time to honor those children and their families who have been through this dreadful disease and those who did not. It’s also a time to bring awareness that children die every day of cancer and yet only 4% of proceeds earned through fund raising efforts go towards childhood cancer research. 
http://www.icareicure.org/get-informed/childhood-cancer-facts/

This month I was asked to light the Survivor candle during the American Childhood Cancer Organization of the Inland NW’s (ACCOIN) Candle Light Vigil. I was honored to be able to be given this opportunity. A lot of feelings come up for me when attending events for ACCOIN, especially this event. Too many feelings to name but some were, survivors guilt, sadness, fear, anxiety and hope, anger and gratitude.  

The one feeling I’ve struggled the most with throughout my life is survivors guilt.  A ton of questions come up from the guilt.  Why did I survive when many do not. Do I have a special purpose in life and am I living it? Should I have tried harder to live, work, become a better person? Am I trying now? Am I too lazy? I do not want answers to these inner questions nor am I fishing for compliments. They are just random things that go through my head. 

I’ve learned to combat my guilt with gratitude. I know I have lived my life to it’s fullest every day, or try to. It’s something that I am having a harder time doing now because I’m slower and get worn out quickly. But on my good days there is no stopping me! I know I’m so lucky to be here that I so I try to live a life of kindness, openness (even though I can be shy and have resting bitch face), be of service to others and compassion. I have the best support system that there is. My family is amazing and I am no short of friends that I know would do anything for me. Most of all, I know I helped bring the most amazing person into this world. I was always told that I would never be able to have children. Well, I did, and he will be 14 yrs old in a few months. He is an old soul and sometimes I feel he is here to help me just as must as I am here to help him. He is kind, funny, sarcastic (like his mama), has a huge heart for dogs and animals and so very smart! I’m so lucky to have him! 
I’ve also been blessed with having the most amazing husband. He is the most kind and giving person I’ve ever known. Seriously, everyone knows Scott does not get mad! We’ve never fought in the 12 years we’ve been together. I know, you don’t believe me but it’s true. Our relationship is easy. It’s crazy how easy it is, even during some of the hardest times in our lives. He is by my side through all my days good and bad. And no matter what health crisis comes up he doesn’t think of quitting. He holds my hand when  I feel weak and want to give up, only providing me with hope that we will get through whatever life throws at us. So how could I not want to continue on! 

A child who has gone through cancer, no matter how severe the treatment, is not ever fully “cured”. We suffer psychological wounds, lasting physical problems due to the treatments used and our family and friends suffer along side of us. Our parents have PTSD from having to watch their child get these brutal treatments, where some make it and many do not. We should be spending more time researching for a cure to end childhood cancer and for better treatments period. I, and many others can tell you that the treatments used to “cure” me are now trying to kill me. A fellow “survivor” (I don’t like that term but it’s late and I am lacking a better one) posted this article recently. 
https://www.hsph.harvard.edu/news/press-releases/child-cancer-survivors-views-on-health/?utm_source=Facebook&utm_medium=Social&utm_campaign=Chan-Facebook-General

I know some people were hoping for an update on my health crap, but I can’t form those words now, I’m tired. Just know I’m doing ok, I have good days and bad days. Focusing on the good ones and living my life with gratitude.  Please share if you would be so kind. Thank you for reading! Is like to hear your thought, comments, etc! 

 https://www.gofundme.com/4gzbpkhc?ssid=745310201&pos=1