A message to all those affected by Cancer – and that’s most of you

Unfortunately, you are most likely affected by cancer.  Either you knew Scott, or you are battling, or have a friend or loved one that is. Maybe you came across this blog while doing the inevitable internet research to understand Ewing’s Sarcoma for yourself or a loved one.  I never realized, until Scott was diagnosed, that cancer is all around me.  Now that I do, I have some things I want to say.

I’ve been planning this blog post since Scott passed away.  I knew that I didn’t want to let this blog end negatively.  Scott wouldn’t have wanted that, either.  After all, he chose the name “Scott’s Chemo Adventure”, because we never had any intention – the thought didn’t even cross our minds in the beginning – that it would end negatively.  I’ve been putting off this post, despite what I hope to be a very positive message, because it’s still hard. I've learned it will always be hard.  But tonight, as I cried through the Stand Up To Cancer telethon (more on that below), I decided tonight was the night - because I DO still Stand Up – because I DO still believe that there is hope.  My best friend asked me how I can tolerate watching the show, and I told her I feel like I have to look this in eyes and “Stand Up”.  I don’t want to be defeated.  What happened to Scott and countless other beautiful people is real, and I don’t want to forget or pretend that it’s not.  And most importantly, I don’t want YOU to give up hope.

In my bereavement support group (more on that below, too) I met a woman who wears a pink rubber cause bracelet that says “Hope” in honor of her sister.  She took care of her sister for 8 long years during her battle with cancer that ultimately took her life.  I asked her how she can still have hope.  She said that the word “hope” meant so much more to her than hoping for her sister to beat this disease – she hopes for a cure, she hopes she and her family will heal, she hopes for peace, she hopes to help other people affected by cancer.  Her answer blew me away because I was feeling, at that time, like there wasn’t much to hope for anymore.  And I thought about her answer for days – I still do.  And I remember the many, many survivors we met.  We met amazing doctors, nurses, counselors, caregivers – people from one side to the other of the medical spectrum, and people from one side to the other of the patient, friends and family spectrum.  I learned from each and every one of them why I should have hope.

I’m not going to lie – for the first time in my life, I am scared of death.  It’s real to me now.  But I believe – with all of my heart – that if I, or any of you, were diagnosed with cancer, there is every reason to have hope.  Many, many people survive.  Many, many people get to go on with their lives, kicking cancer’s ass.  According to the American Cancer Society, an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012.  That’s a whole lot of SURVIVORS!   More treatments are being discovered all the time and the odds are getting better and better.  Some of you know that I’m blessed to have a friend who is an over 8-year survivor of Ewing’s Sarcoma – and she was knocking it down before Scott ever even came into my life. 

It doesn’t always end the way it ended for Scott, and if you are battling, have battled before, or have a loved one battling – never never never give up.  Have hope.  Don’t get too scared.  Stay strong.  Just keep swimming.  Stay informed – but rationally.  Know that you are going to read a lot of scary things, and use those to your advantage.  Use the information to stay ahead in the battle – to ask about the options and know how to combat the side effects of treatment.  Know what to do to help you battle (both as a patient and as a caregiver).  Know what facilities and Doctors specialize in what types of cancers.  Know where to go to help you find a community of support and understanding.  Know how to take care of yourself and what to do to prevent cancer and detect it early.  Know that you, or your loved one, can beat this.

Know that even I, while missing Scott every day, still have hope.  If I can – you can, too. 

Please take a moment to learn about the organization Stand Up To Cancer:  http://su2c.standup2cancer.org/what_is_su2c.html.  su2c donates 100% of public funds directly into research grants and they are helping doctors and scientists in their fight to find a cure.  Even a little donation helps (and they have really cool shirts, too!)  J 

I launched a star in memory of Scott tonight.  You can check it out here:  http://constellation.standup2cancer.org/40850.  You can also donate to them by adding to his star, too.  They make it super easy to donate $10 just by texting the word STAND to 40202.  

If you are local and affected by Cancer, I want you to know about the charitable organization Gilda’s Club of South Florida (click here).  They are a non-profit organization that supports everyone affected by cancer in all ways.  They have support groups and activities for those battling it now, separate groups for friends, family and caregivers, for children, and the bereavement group I go to.  Gilda’s is not in a hospital, hospice or church – it is not a solemn place.  It is a place to go that feels uplifting and supportive, but doesn’t try to deny the impact, and the reality, of cancer.  They’ve been very helpful for me, and may be for you to.  I wish I had made time to go to their caregiver’s group while Scott was battling. 

There are several Gilda’s locations across the country, but there are other organizations out there that help, too.  I know support groups aren’t for everyone, but it’s been good to connect with other people who understand what I’m feeling.  I know “I didn’t know what I didn’t know” before this.  I didn’t have a clue.  None.  And now, it brings me some comfort to talk to others about my fears and feelings, and have someone looks me in the eyes and say “I get it”, and they truly do.  It helps me realize I’m not crazy for the way I’m mourning and grieving – that this is normal.

Thank you for reading my very long post, and thank you for your love and support throughout the past two years.  I’m not going to write any more posts here after this one – I don’t think there’s anything else necessary to say.  (Lord knows, I’ve said enough!)  J  If it made you feel just a little better reading this, then that’s the most I can hope for.  Please remember to Just Keep Swimming!

Love always,

Amy