How appropriate that I gave a presentation on this date of all days on sarcoma?
I cannot believe it is November Twenty-ninth-again...already... Wow. It is, of course, a very awe-inspiring thing, but it still brings back a lot of thoughts and memories. It nearly knocks the breathe out of me, thinking about what happened on this date, 5 years ago (has it really been that long!?!) and the days after it.
The year that changed everything (again), 2002, it fell on the day after Thanksgiving. I had gone through MRIs on Wednesday of that week. Ironically, the day I went in I was only supposed to get them done on my hips and leg and that morning I had a strange feeling in my right arm pit, like I had years before. My Dr. added MRIs of my back into the mix at the last minute.
We all waited anxiously on Friday for the results, having nervously hosted and enjoyed Thanksgiving as a family, to distract our minds and pass the time. Well, then the call came, that no one wants to get, especially with a history like mine, the cancer was back-a third time. This time the worst of all-nestled between some of my most vital organs- my heart, lung, spine and pulmonary artery (somewhat scarily similar to the photo above, which I ironically found on the first page when I typed in 'bad news' for a photo search-kinda gives me goosebumps...).
At some point, we sat down with my amazing doctor to discuss everything. It came down to my body still being weak from transplant, most likely surgery would cause more harm than good (or likely death at this point), I had maxed out on chemo and radiation. And bottom line was, as I learned later on (if you go by statistics, which apparently I do not), NO ONE in the world had ever survived a relapse of my cancer after a stem cell transplant-they had lived a few weeks at most. It just did not happen. (Doctors-"world renowned doctors"-around the world told my doctor to essentially put me on hospice and give up, which he never did either of them.)
I remember asking Dr. Bob how long I had. He said he could not say for sure-a few months? It depended which way the tumor decided to grow first (Askin's tumors usually grow really aggressively).
At that time, it was not like in the movies for me-I did not want to skydive, I did not want to do all that crazy stuff. I wanted family and friends and time. I wanted somehow to leave myself behind but how do you do that? I wrote stuff, I did art, I made up a "If I Die" binder that no one knew about.
But most of all I lived-I really lived life, as they say "to the fullest". I traveled 10 places that December to see family and friends and loved all of it. I looked at the sky and everything around me as if it was the last time and breathed it all in with much thankfulness. Every day was a gift, and still is and I continue to do some of this today.
I know, medically, I'm not supposed to be here. Statistically, I'm the only person EVER to survive the way I did. It's an overwhelming and amazing feeling.
It makes me realize I am here for a reason, or more than one reason. That God has plans for me. I try to use my experience to help others-sometimes I succeed, sometimes I fail but I really do try my best. I'm still figuring out every day why I am still here and I love the challenge. I love the living part.
Today, I am thankful for: my life, having 1 huge project, 1 small project and 2 exams between me and a nice break that is much needed to heal my rundown body, family, friends and God!
Your story is incredible. Makes me thankful that I'm feeling well enough to be "normal" right now. I have a question though? How did they end up treating the 3rd tumor?
Sure. Simply: they didn't. It's a miracle. I had a tiny miniscule bit of radiation to help with breathing and later a tiny bit of chemo to help with pain. The tumor stopped growing on it's own at the size of a small Nerf football.
It just stopped and somehow did not invade or damage the organs around it. And they took it out in May of 2004 (a year and a half later). The surgery went so much better than people thought and the tumor was deemed dead and cannot be explained. I'm sure pple were fighting over a piece of that thing to study it!
Thanks for your comments and questions :)!
And we are so grateful you are still here because we get the chance to have you as part of our family - crazy and insane as we all are:)
i second what maria said... i still can't believe it's been 5 years! today is definitely a day of celebration! (raising my bottled water to you) :) so grateful for all the little every day miracles, but most especially for the miracle that is you. :) love and hugs!
i am so glad you are here!!! what would denmark have been like without you? i shiver! haha HUGS my dear. congratulations on YOUR LIFE! isn't it beautiful???
Mary--thanks and i'm so glad you are in it!! (and Bob, of course). We may have never met him without each other. Aww.
Wrote back to you on my blog =)
So here I sit in St. John's waiting for a friend to go through (minor) surgery ... what a treasure to read this post and think about the gift of life ... your life, what you've brought to our family, and whatever God has in store for each of us.
For the breath he just gave each of us ...
SO GLAD that you're in our family!
Ria and Kelly- THANKS! I am SO lucky to have you in my life too. Yay for family that is not by blood but just as strong or stronger!
Bob, Ria and Kelly- THANKS! I am SO lucky to have you in my life too. Yay for family that is not by blood but just as strong or stronger!
hi Rachel! I found your blog through fray-adjacent! (jamie's blog). I am in the oncology field, too, after being dx'd with HSIL in 2005. are you part of imtooyoungforthis.org?
I remember hearing about those days and my heart breaking, someone like you could be in pain and terrible things were happening and there was nothing I could do to help you.
And there it was. I heard you were all better and I was so excited, so happy, so utterly fantastically enjoying life again.
You are the miracle. And I am forever glad that you're still a part of my life.
I'm thankful for having met you and I'm so glad that you only have amazing things to look forward to!
- Diana (I forgot my password so I have to do this as anonymous)
Thanks so much for stopping by! I'll be heading over to check your blog soon. Until then, have a great day!
Thank you for being there for me during those days and it was so hard to go back to college and tell everyone but you made it easier. Thanks! I'm glad you are still in my life too.
I kept my promise-I never gave up and neither did you ;)!
Diana-you are very special in my life too :). Thank you!!
Just got to this post...
Rachel, I continue to be humbled by your life and your story...but mainly by your love of life! I celebrate your 5 years right with you!
Jill-Thanks! (as always).
I know it was a little long but I was pretty happy with the post :)
Thanks for your great comments on my blog! I would love to tell you more about my story and imtooyoungforthis, etc. - email me at email@example.com - and I will write you!
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