Trust In You

   





I love this song. It is a great reminder.

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.

Hope Now

This is a song by Addison Road- Hope Now.

Jeremiah 29:11
¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future

Listen.

Enjoy..

A constant in a world full of variables

 

Is it October already?!

I still am in shock that it has already been a year since my unexpected full knee replacement. September 26th of last year I went into surgery expecting just a "tune up". Recovery time minimal and I would only be down two weeks. When I woke up, they told me I had a FULL knee replacement. My doctor said he was amazed at how I had been walking around. When they opened me up my old replacement literally crumbled off onto the table. CRAZY!! I mean, it was 12 years old but still. So, they did a full blown knee replacement last fall. Fast forward a year later and I am fully recovered and feeling so much better! Life full of work, laundry and cleaning can continue!

I remember how hard it was last year, not only on me, but for my family as well. When I am down things start to fall apart! Not that I am this awesome superwomen and the world would stop if I wasn't in it! BUT, I am MOM. As with any household mom's tend to keep "the world as we know it" going.

So, last year our world was not only stopped but turned upside down and backwards. We had just switched schools with our youngest. Not only was that a transition for him but for us as well. I felt like I dropped him off in August and didn't go back until November; Terrible. A year later he is THRIVING!! God has answered so many of my prayers for him! He is such a bright kid and is almost too aware of his surroundings at times. So with mom being sick and "having a broke leg" he almost suffered along with me. He was 3 and didn't understand why I couldn't make that long trek up the stairs and put him to bed. He didn't want grandma then, he wanted his mama. Broke my heart to hear him scream, "JUST BE MY MOTHER!". Hurts just writing those words even now. Every day he would come home from school and climb onto the couch with me and ask if my leg felt better. Even now there are times when I walk he asks me if my leg is ok. Such a sweet boy who loves his mama!

I know that being a childhood cancer survivor has a price. I was a child going through cancer. That was rough. No child should EVER have to endure what I have lived through. But cancer at any stage in life is tough. I know I didn't have to do chemo or radiation last year but I did have traumatic surgery and issues similar to what I went through at 15. Both were devastating but having been through this as a mother now, I felt the weight of my world crumbling just like my replacement. I wasn't a child just concerned with myself. I was a wife, a mother and a survivor; People depending on me. I was beyond blessed to have family and friends step up to the plate and carry the weight of MY world on their shoulders. I could not have made it through this past year without every single one of you!

With October being Breast Cancer Awareness Month, I wanted to give a shout out to all those who have carried the burden of cancer while having people depend on you. Cancer takes a toll on not only the patient but the family and friends surrounding them. I applaud every caretaker who tirelessly drives to and from treatments or who takes the kids, makes the meals, and does laundry or dishes. To the person who has that shoulder to cry on or makes inappropriate jokes to bring laughter when eyes are too dry to cry. To the friends  and family who show support in all the ups and downs- your constant, in a world full of variables, is invaluable. THANK YOU. It could not be done without you.

Oscar Pistorius.

Wow. I am in awe and amazed at the dedication and journey this man has had to endure to get to be under the lights! What a proud moment. To anyone who has said "I will never be able to do that" he just blew that all out of the water just by showing up. He may have been highlighted these Olympics but soon after the torch goes out for the 2012 London Olympics, the games begin for the 2012 Paralympics. I believe that there are MANY more amazing men and women who have fought just as hard to represent their country. The moto for London 2012 is "Inspire a generation".  I have no doubt that Oscar Pistorius has lived up to that moto and more. Check out more about the sports and at the London 2012 Paralympics. I will be watching Oscar run one more time tomorrow night!

Dyrk Strong.

What a great story of how community pulls together to bring smiles to a child with cancer. Firefighters are amazing in their own right but what all these stations have done for this one boy is pretty cool! AND they get to play with fire and it is ok! Win win. lol

http://www.huffingtonpost.com/2012/06/19/dyrk-burcie-cancer_n_1608237.html?1340107954&icid=maing-grid7%7Cmain5%7Cdl10%7Csec1_lnk3%26pLid%3D171086#s=more233553

You Steady My Heart

I love Kari Jobe! Her songs played in the hospital and at home alot these past months. This song says alot of how I have felt many times. Such truth in the words.

It's just like riding a bike...

So the time has come! With Christmas time over and the New Year rapidly approaching, the New Year’s resolutions have begun. I have never been one to really take much thought in having a resolution. I think I might have had the ever so popular “start going to gym more or quit drinking”, but this year I have decided on a life changing resolution. I actually have put a lot of thought and time into this New Year’s resolution. 

So here is, I am taking up biking and will compete in a race.

This is how it all came about. It all started when I read the book Who Says I Can’t? .  I have talked about the author, Jothy Resenberg in previous blogs. Anyway, while reading his book I started thinking about my years as a runner.  I can’t even describe how important those years were to me. I am so thankful that I had that time in my life to excel as an athlete. I know it was short lived but it was that same drive and determination carrying me on to run the race of my life! The skills I had developed as an athlete proved to be equally important with my personal battle with cancer. I use to run about 7 miles a day and run about a 6 minute mile, which for 8^th grade was pretty fast! I lived, breathed and slept running. I will never forget the day the doctor told me I would never be able to run again. He said the strain of running would be too much for my replacement. Crushed would not even be close to accurately describing how that day felt. I was defined by my running. Back then, that’s who I was, not just what I did. So not only was I fighting for my life, I was also fighting to discover a new identity.

“What can I do now? If I can’t run, how can I possibly be an athlete? What good am I with one good leg?”

So many thoughts went through my head.

 I wish I would have had Jothy’s book back then because I would have seen how endless the possibilities could have been for me! I feel now I lost so many years mourning the loss of my identity instead of putting all that energy into finding a new outlet. Nevertheless I have found it now! I am taking up biking! I think that if I put that stubbornness, drive, determination, which I know I have, into biking I will succeed!

I know with anything it will take hard work and some blood, sweat and tears. I am setting my goals high. With that I am going to enter in the Beauty and the Beast cycling race in March of 2011. They have several different levels at which you can compete, so I will enter in the 34 mile race. The longest is 64 miles. I have 3 months to get into shape and up to par to compete. This race is just the beginning. I want to start small but my all-time goal is to compete in the Pan-Massachusetts Challenge in Boston. They raise money for the cancer research and treatment at Dana-Farber Cancer Institute. Its a bike-a-thon through Massachusetts; Pretty hard core. I think the longest race is 111 miles. Wow. Not ready for a two day ride but I will be doing baby steps till I am strong enough to compete in at least one of their races. Jothy watch out! Lol

First ride on my new bike was 3 miles. Felt pretty good. My husband and I took our 10 year old on a ride. Spent some nice family time. I will slowly work my way up and continue to increase my speed and length of rides. I am determined to finish the Beauty and the Beast. I may not be first (this year lol) but I WILL meet my goal. I survived cancer, I can do this!!

So I hope you will all follow me on this next chapter of my life, because this is an important step for me. I will keep you all posted on my progress and even throw in a few pictures!

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/