Go Gold

September is Childhood Cancer Awareness month! Spread the word. Let's GO GOLD in September like October goes pink.

If I Die Young.

From the first time I heard If I Die Young by The Band Perry I felt such strong emotions. I couldn’t quite place why I was so responsive to a song but I began to REALLY listen to the lyrics and try and get a feel for what the song was really saying.  In the first verse it has a line “the sharp knife of a short life.”  Wow, this could not be truer about those who have lost their battle with childhood cancer. That knife cuts deep and those left behind to grieve, will never fully recover.  The whole first verse goes like this:

{Lord, make me a rainbow; I’ll shine down on my mother

 She’ll know I’m safe with you when she stands under my colors

 Life aint always what you think it ought to be, aint even gray but she buries her baby

The sharp knife, of a short life. I’ve had just enough time. }

Survivor’s guilt is something that I think every cancer survivor deals with in their own way.  There are so many unanswered questions when it comes to cancer. Why is probably the most common word used. Most sentences start with this word.

Why did I get cancer?

Why haven’t we found a cure?

Why did I live and someone else with the same cancer die?

Why am I not able to have kids and others are?

Why do all my dreams have to be crushed?

Why didn’t the doctors catch the cancer sooner?

Why can’t my friends and family understand what I’m really going through?

Why do I feel so alone?

Why am I suffering?

WHY DO I HAVE TO DIE?

You get my point. The questions are endless.  Why: An adverb used to ask or talk about the reason, purpose or cause of something.  I think every cancer patient wants to know what caused their cancer or talk about the reason they got cancer. There has to be a purpose for all this suffering. I think WHY and CANCER goes hand in hand.  I wish I had all the answers to the Whys of cancer.  I think about my friend Vanessa often and wonder why she had to die and why I lived. She was the person who got me the best.  We were partners in crime and had more things in common than any other person in my life. We were fighters, struggling day to day just to survive.  She lost her battle all too soon. That sharp knife of a short life will follow me till the day that I die. She was the first friend I had ever lost. Death became real to me after she passed away; she would be the first of 5 that I would outlive. How do you deal with that? What do you say to the grieving mother of your friend you have just lost? I can only imagine the emotions they feel when looking at me.  No 16 year old should feel guilty for simply being alive. BUT I DID.

Who Says I Can't?

    I recently finished the book Who Says I Can't? by Jothy Rosenberg. He is an Osteosarcoma survivor, like me. What a remarkable story! The fact that he is an amputee, has one lung and is still alive 35 years later to write about it is amazing. He was told he had zero chance of survival. At age 16, he was lying in a hospital bed with one leg and receiving the primitive treatment of chemotherapy. Back in the 70's cancer was, for the most part, a death sentence. 24 years after Jothy was fighting for his life I was living that same nightmare. Even though I have never met Jothy I felt, after reading his book that he got me. He somehow, reached inside the inner depths of my heart and put into words the dark and scary truths of what life really can be like for a teen cancer survivor, living an anything but normal life.

     One of my favorite lines in the book was when Jothy said, " I might have thought I had died and gone to heaven...if I wasn't so happy not to have died." Wow. What a powerful statement. Not sure why that phrase stuck with me. I guess maybe because going though cacner evey milestone seems to be such a great accomplishment. Every step taken is a giant leap. I remember learning how to walk again. Not once but twice! They told me I would only have minimal range of motion in my knee. I would probably never be able to bend it at a 90 degree angle.I surpassed all expectations of my doctor. I now have FULL range of motion only because of the MANY falls that I have taken, I broke the scar tissue they had anticipated preventing my ability to bend my knee. My pride as well as my physical body has taken many falls those first few years of rehabilitation. Taking a nose dive in biology class is not on the top ten things to do as a sophmore that's for sure!

 Check this link out:http://www.facebook.com/#!/Oprah4KidsCancer.      

      The goal is to raise enough awareness so Oprah will do a show on childhood cancer. It’s amazing how fast the page has grown in just a few short weeks. As of now, it is 44,000 strong! When you think of cancer you don’t think of babies or children. Your automatic reaction is maybe breast cancer or lung cancer. If people really saw the actual number of childhood cancers diagnosed every year, I think more would be done to improve research. Right now 3% of all cancer funding goes towards childhood cancer research. That’s it. We are talking the #1 KILLER for childhood diseases and we get 3%. It just doesn’t make sense. This has to change. Too many young lives are lost because of the lack of funding. I am here today because of the ground breaking research that they have done since Jothy was diagnosed. He didn’t have the option to save his leg or try a new limb salvage surgery. They decided for him and even then there were no guarantees. This day in age there are protocols, surgeries, and cycles of chemotherapy. All this is around today because of research. We still need to continue with that research. Just because the survival rate for childhood cancers has gone from 10% to 80% doesn’t mean we stop at the 80%. (There are some cancers whose survival rate isn’t even half this good!) The only way we will increase funds for childhood cancer research is bringing awareness to the issue. Cancer is not for the old and unhealthy.  Brothers, sisters, sons and daughters are fighting to see another birthday. I hope after you read this you will go and check out the “Oprah please do a show on childhood cancer” then “like” it.  Not asking for money just a moment of your time! (Although childhood cancer research could use your money too! But we can just start with baby steps!)

     I feel as though every day I walk that fine line between Who Says I Can't and the common sense to preserve the one good leg I have been blessed to still have! It's a tossup most days. Wake boarding on my 21st birthday I will admit, was NOT a good idea with a prosthetic knee. Good news, I can scratch wake boarding off my bucket list. I so rocked that board before I cashed and burned. Yea, that tune up surgery was not  fun. I guess you live and learn.


If you want to learn more about Jothy Rosenberg check out http://www.whosaysicant.org/