13 years ago today...

After emergency surgery with Carrie

I was told that there was an egg-sized tumor wrapped around T3 and T4 of my spinal cord.  It was causing numbness in my legs and chest and shutting my body and breathing down by the hour.  I was told I would go through various tests and have emergency surgery to remove as much of it as I could.  They hoped that I would regain feeling in my extremities and not be permanently paralyzed or worse-die.  My surgeon was kind enough to tell me (in his South African accent) that he was going to "talk to my like an adult" and told my 15 year old self what the outcomes could be.  While it was hard to hear, I appreciated his honesty.  That night we also met my amazing oncologist, who I cannot thank enough for everything he has done to help save my life.

It's always hard to believe how much time has passed and how much has happened in my life-for good and for bad.    That day I accepted the personal motto, "I will just do what I have to in order to get better".  I was so naive-who knew what was to come...I also somewhere along that path adopted optimism and hope.  I'm not sure where it came from exactly, but I do know that God, amazing doctors, family and friends helped a lot in my journey.

Today, I am thankful for so much it's hard to describe it all...keep taking it one day at a time!  Thank you to God, my doctors and medical team, family, friends, etc.

Love,
Rachel

Happy 10 years of Surviving!

I woke up this morning and freaked out a little-Wow, it's December 5th. Diagnosis Day (click here for more details). The day everything changed 10 YEARS ago. It's crazy it has been that long now.

...and here I was going to the doctor again....specifically to a neurologist again...in fleece pants again (different ones). The similarities were a little creepy.

But the results, for now, of today's doctor visit: (in a 'Price is Right voice')....and I won...a new...MRI.

Today, I am grateful for great doctors, family, friends, God and weekends :).

Rach

Not sure how I didn't blog about it...

But yesterday was obviously November 29th...6 years since we thought I had weeks to live!

Read more about it from last year's blog post here.

Today, I am grateful for an amazing family, friends, God and life!

Rachel

D Day

Sorry, not really me...did not ever have knee braces, etc.

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 :).



Love,

Rachel

November 29th

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!

Much LOVE,
Rachel

Happy Halloween-Part 2!

Happy Halloween (again)!

(yes, I put a red tint on the pic in case you were wondering!)

I just had to post again after my vigourous hour of raking, although I usually restrict myself to 1 post a day! Haha.

Anyways, it was so nice to do something fall-ish on Halloween and something that made me feel more 'normal'. It was also a nice counter-action to having to go to the Dr on Monday for a shot (ugh).

I hadn't really raked for about 9 years-hard to believe! I was sick for SO many years...the last time really sticks out too because it was right before I was diagnosed. My back was hurting SOO much and my Dad said, "Rachel, what would you like me to do?... Surgery? It's not going to help your back."

Poor guy-he's never lived that comment down. At that point, the pediatrician had assured us my pain was from an overly heavy backpack, like all the other kids...

I am grateful for getting a working out doing normal things, having had that surgery that relieved the tumor off my spine and enjoying the fall weather.

R