Why is it important to me? and will you come?

Why is this so important to me? This is the question I have asked myself many times recently. I ask it in regards to our Step and Fetch Sarcoma event.
Its just around the corner, next Sunday Oct 2.

Why do I want to do it?...because like so many things in my life, it just not just affect me.  In fact, by wanting to have the Step and Fetch happen, I ask a lot of people to help me.  I ask others to spend their time, their energy and their money to help me do this.  It's a lot I ask of others.  And I am asking you to come out and join us, to be a part of this day.  Please, please consider coming out Sunday Oct 2, to walk with us.  If you possibly can, please be a part of this because it matters to me more than words can say - that YOU come. So if it matters to me this much, I feel I need to ask myself WHY and hear in all sincerity the answer.  Is it reasonable or fair to ask for all this of others...definitely not.  But I do it anyway, and have been for the past 7 years now.  So I ask myself, why?

I should stop here and explain Step and Fetch just a bit.  This is an event, we have been doing it since 2009 and it began as a wee conversation at JB Print one day.  December 2008 was when I first learned my particular Sarcoma case of Sarcoma cancer was going to be incurable, and I had fought one of my biggest medical battles when told there was not treatment for me and then going to Mexico and paying out of pocket for chemotherapy and radiation. It was at this point in time it fully hit me just how little I knew about my cancer, how very dangerous it was, I was the only one I knew with Sarcoma and it felt pretty hopeless.  When I started trying to learn more about my disease I also started to connect with others, hear their stories.  I was no longer alone and I was learning a lot about what this cancer called Sarcoma does in the lives of others.  I felt compelled to do something, to try to make a difference.

So one day I uttered these words while sitting in the JB Print office...."I wish I could do something to bring more awareness and understanding to the community about Sarcoma".  And the JB Print gang...they said "well, why don't we?" and my family said "we will help".  Before we knew it, a printing company, along with a small band of family and friends, was thinking up a way to educate participants while having fun and being in our community.  Step and Fetch was born.

THE STORIES...

“Facts bring us to knowledge, but stories lead to wisdom.“  Dr. Rachel Naomi Remen

In 2008, when I was desperately seeking to understand the disease within me and searching for treatment options to prolong my life, I started finding others who also had Sarcoma touch their lives.  It began online; websites and chat groups.
I found real people who had walked the same path and learning how they felt, what they did,  where they went for treatment, how they talked to their kids, what their experience was.  Some of the best websites for information were done by people who were honoring a lost loved one.  I found a community, a sarcoma cancer community and it made all the difference in my world.

Walk starting at Quinte West City Hall

The Step and Fetch brings people together and gives them an opportunity to connect with each other. Cancer patients and non-cancer patients, families of cancer patients, health care professionals...we all can benefit from hearing each others stories.  Gathering people together is very powerful, and that is why Step and Fetch is designed to encourage interaction, through the story boards, shared hot meal at the end of the walk and the guest speakers who bravely step up to the mic.  Simply the act of doing the walk together is so powerful...it's the most amazing feeling.

THE FACT CARDS...
When the topic of cancer comes up Sarcoma is not a word many people have heard of.  One of our main goals with Step and Fetch was to change that...one small step at a time.  Awareness and better understanding of Sarcoma is important for a couple of reasons.  The first is many patients are not diagnosed early, simply because the symptoms are overlooked or thought to something else for too long.  There is power in knowledge and the Fact Cards are way to educate while having a good time (collecting cards and winning prizes). There is so much to be done in research for better detection, treatment and prevention of Sarcoma cancer and to be honest, it gets very little research funding.  The general public needs to know how devastating this disease is, especially in the lives of children and young adults, so they will push for better funding through both public fundraising and government supplied funds.  The medical profession also needs to be more aware of Sarcomas, to ensure early detection and referral of patients to Sarcoma centers.

Dr. Faulkson, a Sarcoma Radiation Specialist

and most important, COMING TOGETHER...to celebrate those living with and beyond their disease, to remember those gone from us because of the disease, to build strength through a grass roots community effort.  Together we can and will make a difference.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.  Margaret Mead

I may have skirted around the question I asked myself...why is this so important...to me personally? 

Why do I ask so many to help, to give their time, efforts and dollars?  I often feel I ask too much and yet, every year, I do it again.  And the help is given with smiles and a willingness that goes deep. At the heart of it, it's because I want to help others.  It's just simply that.  It is with much, much gratitude that I thank everyone who helps me to do this.  

Every person counts, every person makes a difference...so please, consider joining me and being a part of this amazing thing we call Step and Fetch.  I hope to see you Sunday Oct 2, 2016. 

Details...you can learn more or register at www.cancer.ca/stepand fetch and see lots of pictures on our facebook page Sarcoma Steps or pop into JB and of course, I always love to hear from you.

With much love, hope and faith,

Teresa

If not us, who? If not now, when?
Kennedy, John F.

See you Oct 2nd

Eribulin, Anxiety and the Bucket List

Do I ever write a blog post in the evening?  Once again, it's 6;30am and I am sitting feeling the morning air coming through the window as I open my keyboard and feel ready to send the thoughts in my head and feelings in my heart down through my fingertips to the keyboard.

This morning is Day 8 of my first cycle of Eribulin.  It's a brand new chemo, freshly approved in clinical trail and by the FDA for Sarcoma and available to me after a lot of advocating on my behalf by doctors for a compassionate grant from the drug maker.  Eribulin is not a new type of treatment, it's just another type of chemo.  Our hope is that it will slow, stop or even shrink the tumor growth.  Since March my tumors have taken on a whole new pace of growth, rapid and unpleasant to be honest.  I pray my body can withstand the treatment.  My biggest concern is my Hemoglobin count (red blood cell) which has been struggling for months now.  My doctors of course have many concerns, infection been high on their list. We will just have to take it one week at a time.  There is definitely possibility that my body handles it just fine and the tumors get the sh*t kicked out of them for a while.  I am grateful to be starting treatment; we have been working towards this for months now and setbacks kept happening, and there is potential (that beautiful thing called hope) for relief from tumor growth.

Being honest with you, a new struggle is anxiety.  Naturally, we all have moments of anxiety, for good and bad reasons.  But the last two months I have felt it a lot more.  The tension in my rib cage, the sweating, racing heart and feeling of being overwhelmed and incapable.  I wake up and realize I must have been dreaming because I am all tense.  Sometimes I wake up and remember what I was dreaming and it's not nice.  I am working on ways to counteract this anxiety - reading books about relaxation techniques, listening to music, reaching out to talk to family and friends.  Yesterday I met with a Social Worker and that is going to be helpful going forward too.  Talking with the social worker yesterday, one point I realized is that over the last two months I have had to be extra vigilant monitoring my body for changes that may indicate reasons to seek medical attention.  This was for good reason, there have been quite a few hurdles with kidney distress, edema and fevers.  However this has also trained me to be super aware of my body, any changes in feelings and many of those changes resulted in going to emergency and hospital admittance.  So now I need to undo a bit of that.  Of course, being aware of my body is still very important and I must continue that.  But I also need to teach myself and practice the art of being aware, mindful, present and ...the big and ... being able to ground myself, relax, and assess the situation with better perspective.  Breath, I must remember to first breath :)  This is not to cause you to panic for me or start sending me tips on relaxation techniques and articles about essential oils and herbal teas :)  I am sharing these feelings because I bet I am not the only one.  Last year I would have told you anxiety never crept up on me, but right now it's a different story.  Just goes to prove nothing stays the same.

The bucket list.  It's talked about a lot in life, especially when you are faced with a crisis or situation that you feel threatened in.  A movie made it famous.  I have always had a bucket list...it has gone by different names through the years...goal list, dreams, thoughts.  It has been written in journals, on scraps of paper, kept private, posted by my bed.  I think it's a wonderful thing and I hope everyone has one of some sort.  People ask me sometimes, even doctors will ask...do you have anything on your bucket list?  Yes, I do.  There is one big item on my bucket list.  It's not a trip, it's not a destination and it's not something money alone can buy.  I am so blessed, so grateful, so appreciative and I feel so loved because my bucket list item is coming to fruition because many people are helping to make it happen.  This grand item is a barn...yes, a physical structure...a barn right there beside our house.  A barn I helped plan.  A barn that already is my happy place.  A barn where I have my horse, a few chickens and some sheep.  The barn has always been my happy place - as a child, as an adult.  The beautiful thing that I see happening right before my eyes this summer is the building of this barn, and it keeps my dreams alive.  I can't build a barn on my own, in fact, I am of very little help in the process.  But no one points that out.  My family just keeps working away at it, and I know it's all done in love.  Much, much love - how did I ever become so blessed?  And it's everyone...some are lifting boards and pounding nails, others go to pick up building supplies, or bring us a snack while we are working, sweep the floor or simply stop by to check on progress.  No one has every said "this is silly, all this work and money on a barn, and really Teresa, how much are you going to use it?".  Nope, they all just keep on building the barn and building my dream.  I wish I could tell you, and the words fail me, just how loved and blessed I feel.  I am one of the luckiest people in the world.  God loves me.  My family loves and supports me in more ways than I can count.  Friends stick with us, check in, come over, lend a hand, send a word or card of support.  Life today is not a life I ever pictured for myself.  Life today is very good, and now I am going to go out to the barn :)

With much love, hope and gratitude,
Teresa