Today marks the 9th anniversary of my first (of 3) "D Day" or commonly known as Diagnosis Day, to the layman and my emergency surgery. On the day before this one, at age 15, I got my first unscheduled meeting with the Cancer World and now, I understand one meeting turns into a lifetime of them. There is really no heading out the door, slamming the door and not returning. Not an option, at least for me and my situation with the big C.
As a high school sophomore, I woke up December 4th of 1998, a Friday, for before school JV basketball practice (I was so excited to have made the really competitive team for my favorite sport. I had prepared for this team since playing with my Fischer Price hoop at age 2. It ran in my blood-my dad played in college). My legs and part of my chest were asleep, or so it felt but the strange thing was, they wouldn't wake up. The sensation was not quite the same but for the sake of explaining, that's the closest thing I can come up with. Although, I was mostly worried about missing the big basketball tournament game that night, I was also scared and agreed to see a doctor. After all, my chest was slowly losing feeling too.
We attempted to call the orthopedic doctor (previously I had only broken an arm and was a very healthy kid) and were referred to a couple of neurologists. Well ,this started my string of miracles because none of the neurologists could fit me in. One said well, how about Monday, first thing?
Then, as my mom was on the phone with my dad trying to decide what to do, a different Dr. broke into the phone line (we got the 'new' call waiting soon after...). He said, he was in doing paperwork because he had been sick but to come in anyways. That decision SAVED my life. The Drs have said if I waited until Monday I would have died or ended up in the ER and they wouldn't have known what to do. The tumor was deep and it could not really be seen from the outside.
After an MRI, my mother and I came back to the neurologist’s office and immediately, he did the old “Let’s sit down” talk. He showed us the scans and had emergency surgery lined up as my mother cried softly across the room in her chair. While comforting her, I thought, “Well, I will just accept whatever needs to be done and do it to get better!” My optimistic thoughts lacked any tangible reference point as to what treatment would entail. My second thought was worrying about letting my basketball coach know that I would miss our tournament game that night.
An egg-sized tumor was strangling the upper section of my spinal cord. My breathing was already being suppressed and shutting down my body by the hour. We met Dr. Bob and my surgeon. From Day 1, Dr. Bob became a second father who treated me like an addition to his already adequate brood of five.
As I lay in the bed hooked up to IVs, I studied this man who had an immediate and long term plan to save my life, that's if I survived this emergency surgery. His tired eyes were very loving and he had driven back to the hospital on a Friday night to meet with my family. I could sense that he was a special person and I decided to trust him. With his relentless, caring, and knowledgeable approach, Dr. Bob became the first good thing in my whole experience. Then came the fact that I did not die that weekend, which was a very real possibility.
The positive: after the surgery I regained all feeling back in my body and suffered no paralysis. The negative: I was diagnosed with Askin’s Tumor, a very aggressive, rare and relatively unknown type of Ewing’s sarcoma cancer found in only 3 to 30 people worldwide each year.
Back to work (again). Yawn!
Today, I am grateful for: AMAZING doctors, prayers, God, love, hope, positive things, family, friends and all of you reading this :).
Thank you so much for sharing your story. My 6 year old daughter is currently fighting Askins tumor. Your story is difficult to read, but it is also uplifting to know how far you have come and how full of life you are! I just found your blog today from a reference on Carepages. Thank you!
Wow, thanks for writing! How did you find my blog? I like to know who referred me :).
How is your daughter? Where is her cancer? I will keep her in my prayers.
I didn't realize you were in your teens when all this started. You are a strong person. I feel so much for people who have to deal with this type of stuff at young ages.
Hugs - hope you're feeling better today. :-)
Mary-I'm really not feeling good but I'm trying to ignore that fact and power through to finish my project for tomorrow. I just have designing the layout, cutting and gluing left and oh yeah, finding some energy and motivation. How's your school stuff wrapping up??
Jamie-Thanks for your words!
I'm reading this. And there you have it. Things to be thankful for.
You sure update a lot. Makes it hard for a busy man like me to get around to reading it all the time. I should just subscribe or something.
Need some motivation? I love you, as always, and you are on of the strongest people I have ever met. Something in your way? Something you need to tackle? I know for a fact that you can do it.
You always will.
Anniversaries are usually "happy" occasions but the reality of life is that we have to celebrate even the not so "happy" anniversaries...they are as much a part of our lives as the joyful ones. It gives us time to reflect on how blessed our lives are, even through the worst of the experiences. Happy anniversary to you Rachel...and may you celebrate many more!
Your aunt Cindy Gardner mentioned your blog in the messages on Nikki Weinberg's Carepage (CarePage Name: nikkiweinberg). I have a site for my daughter on Caringbridge.org (ingridkoran).
Take care (I mean it),
Thanks Cameron for your kind words and yes, it's my goal to update every day ;). So far, so good!
Sherry-in a way, it's bittersweet. Hard to think of yet happy to still be alive and to be thankful for all the miracles along the way!
Lori-Thanks so much! I'll be sure to check them out!!
Congratulations on 9 years... Keep up the positive attitude (it really works wonders).
this july ism y 10 years since relapse of askins tumor/ewings sarcoma. i have never met anyone with my diagnosis. as stupid as it sounds, im glad to know of someone else out there who has what i have.
we are the 3-30 people who are just "special" enough.
Thanks for stopping by Amber! Very cool and congrats on your remission and life. Nice to meet you.
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