Thursday, November 10, 2011

A Beautiful Soul Leads to a Purpose of Advocacy

Four years ago on an ordinary hot summer July day I sat in a doctor’s office when three words changed my life.   “You have cancer”    I actually don’t remember the exact words that were said to me, it could have been “the biopsy results are malignant” or “we found a tumor”.   The exact words do not matter, the gist of it is in a few minutes my world was turned upside down.    I have heard it described as the induction to a club that you never wanted to join.   As I look back, memories of the first 6 months are surrounded by a fog.   I struggled with balancing treatment, work and just trying to get through each day one moment at a time.     I kept my head down when I was at treatment and did not engage with anyone else that had cancer.   One day, I realized I could not do it alone.   Even though I had a strong circle of supportive friends and family, I needed to talk to someone that could relate.     I found a local support group for young adults, joined several online communities and slowly started to learn that I was not alone.

Fast forward a year and it looked as though I was losing my battle with cancer.   Treatment was not working and I was told I only had a few months two live.    As you can imagine this was news that was extremely hard to cope with, but with the support of my friends, family and cancer friends I came to terms with my prognosis and embraced life.

As it turns out the prognosis was wrong.   No one knows why I am still alive and even though I am not cured and still have daily health struggles, I am finding ways to live a meaningful life.   During the time after my expected “expiration date” I have become very active in what I call “the cancer world”.   I have attending several retreats; become a member of several organizations that provide support to cancer survivors and transitioned from a cancer patient to a cancer survivor and advocate to bring awareness to the issues that affect cancer survivors.

In the last three years, I have met hundreds of cancer survivors and have formed many friendships.    Cancer survivors share a special bond and we often form strong relationships over a short period of time.    Some of these friends I have met in person, others I only know online.   One of the consequences of becoming friends with people with a life threatening illness is the likelihood of your friends dying is increased exponentially. 

Over the last several years, I have known over 30 people that have passed away due to cancer.   When I thought I only had a few months to live, I struggled with whether I should continue to attend events where I would meet new people and become friends.  I was afraid that I was inviting someone into my life and asking them to watch me die.   When I brought this concern up to some of my friends, I was told that is the risk we take when we meet other survivors.   Every time I learn about the death of another person with cancer, I experience a type of survivor’s guilt.  Why am I still alive when this other person is not?

Beautiful Sage
This summer I attended a camp for young adult survivors.   I spent a week with 9 incredible survivors at an adventure camp learning how to white water kayak and triumphing over a new type of physical and mental challenge.  One of the first fellow campers I met was a vibrant young woman from California nicknamed Sage.  I was immediately struck by her larger than life personality.    Throughout the week I was lucky to spend time with her and found a kindred spirit.   Shortly after camp, I learned that she had a recurrence and sadly her prognosis was not good.  This past Saturday, I received a phone call from her mother with the news that Sage was in a coma and had only a few days to live.  This news was not unexpected but it was devastating.   For several weeks I knew in my heart that it was a matter of time until the cancer would overtake Sage’s body and her time on earth was short.  Yesterday morning, I received another call from her mother letting me know that Sage had peacefully passed away the previous morning.


I cannot begin to adequately describe the many wonderful qualities that Sage possessed.   I do not have one memory of her at camp when she was not smiling.   I wholeheartedly believe that everyone that had the honor to meet her is better for it.   She has a spirit that touches everyone is a unique way and I for one am blessed to have met her.   One of our fellow campers described Sage as the type of person the world needs more of.    I may never see Sage in this life, but her spirit will always be with all that loved her.


Earthbound and Sage
When I decided to stop treatment, I dealt with the prognosis of an early death.  I have spent the last couple of years waiting for my health to deteriorate and for eventual death to come.   For some reason, I am still alive.   No medical reason has been determined why I’ve been blessed with more time.  For days I have been grappling with why my life has been spared and a beautiful, young woman with so much to give to the world was not.    Why does it feel as though the people the world needs most are the ones that leave us all too soon?   I have come up with only one answer.  I believe I am still here to make sure the world does not forget all the people like Sage; to ensure that all the cancer survivors whose life ended prematurely have not died in vain.


Snow Surfing in July
Currently I am involved with an organization called I’m Too Young for This, also known as Stupid Cancer.   It is one of the leading support organizations for those affected by young adult cancer.  I am part of a team of dedicated volunteers that are planning the 5th Annual OMG Cancer Summit for 500 young adult patients & survivors, long-term childhood survivors, caregivers & supporters, parents, siblings & friends, oncology social workers and nurses.  The summit will be held in Las Vegas in March 2012.   In the past couple of weeks I have been dealing with several medical issues and I have been finding it difficult balancing caring for myself and finding the time needed to help plan for this event.   While my struggles are not behind me, I am more committed than ever to make the OMG a successful and meaningful event.   As of today, I am going to dedicate every moment I spend working on the summit in Sage’s memory and for all of the millions of cancer survivors that are no longer with us.  To learn more about the OMG Summit please go to http://omgsummit.org/2012/.

I am currently fundraising for three organizations that have provided invaluable support throughout my own Cancer journey.  If you are as passionate as I am about supporting the lives of those affected by this horrible disease, please consider making a donation to one of these incredible organizations.

Stupid Cancer / I’m Too Young for This http://stupidcancer.com/
Support the efforts of Stupid cancer in ensuring that young adult survivors get the chance to attend the OMG Summit and participate in a life-affirming weekend of support, education, community and hope.  http://www.crowdrise.com/omg2012/fundraiser/alliward

Offers young adult cancer fighters and survivors (ages 18 to 39) a free outdoor adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.
http://teamfd.firstdescents.org/2011/fd/Lolli/Alli/

Solo Survivors http://www.solosurvivors.org
A new organization whose mission is to provide tools, resources, support, and connection to navigate the cancer journey as a single person. This is not a dating service, but rather a place to feel connected to a larger community of singles who are facing similar challenges for support, sharing and advice.
http://www.crowdrise.com/Solo-Survivors/fundraiser/alliward

4 comments:

bettyC said...

Thank you! I "enjoyed" learning of your journey.
We too have had the friendship of other ALS people and their families. I don't know abt cancer but w/ALS the whole family is affected. We have lost many friends to ALS.
Bruce was given 2 - 5 years to live. It's been 5 years and he is in pretty good shape. He can't walk and his arms are getting weaker but he still has his brain and he can speak clearly. We're pretty lucky.

Karen Ingalls said...

Thank you for sharing your story. You are an inspiration with your positive attitude and outlook. I am a 3 year o.c. survivor and have a blog: www.outshineovariancancer.blogspot.com. Through this blog I hope to give information and inspiration to women. We all need each other.
I look forward to your next blog.
Karen

Manny Bermas said...

I had prostate cancer in 2001, had surgery and am okay thank God. Then eight years later, I learned that there is such a thing as acidic and alkaline drinking water. I believe the acidic Diet Coke was the cause of my cancer.
Reading books showed that if the 70 - 90% of your body which is fluids/blood is alkaline, NO disease can stay alive. IE., your healthy cells will remain healthy.
So I invested in a portable water Ionizer machine which produces Ionized Anti Oxidant water made by a 38 year old Japanese Co. There are over 500,000 of this Water Ionizers world wide and the results are good. I really want you to read up on it. It should prevent the recurrence of cancer because all the cells of your body from your brain to your hear, liver, pancreas, breasts and etc will be swimming or immersed in alkaline water. You will have peace of mind and please spread the word. Hopefully no more of the chemo poison drinking.
Dr. R. Young states that no cancer cells can thrive in an alkaline environment.
If interested email me for more info or call me. 832 671 6490.
All the best and God Bless.
BTW, I also spread the Word.
Manny Bermas

Brian McMahon said...

Sage sounded like an incredible person. Becoming an advocate and helping to support other cancer survivors is a great way to honor the memory of your friend. Thanks for sharing.