Monday, September 01, 2008

Celebrating Birthdays Again!

Rachel had wished Dana a Happy Birthday, and here is her reply...

Rachel, thank you so much for the birthday wish!

This birthday was sort of a milestone for me... not because I can celebrate long term survival of cancer since my diagnosis is only 4 months old. But this is my first birthday in 11 years that I actually WANTED to celebrate.

When I turned 50 I started disliking birthdays and from then on tried very hard to make it just another day of the year telling everyone my days of celebrating birthdays were over!! In the first hours today after I woke up and began my "birthday" it slowly started to sink into me what a beautiful gift a birthday is to anyone with a life-threatening illness, and how incredibly uncaring it is to say to people that a birthday is not something to celebrate.

My perspective on many things has changed a great deal since I became a "cancer patient." Today's celebration of my birthday is one more milestone in this journey. I now look foward to next year's birthday and sincerely hope that I can CELEBRATE many more birthdays....never to make light of it again but to celebrate with a heart full of love and gratitude for each and every day spent living this gift of life from one birthday to the next.

And happy birthday to my fellow scorpion....Brenda! We are said to be like a phoenix Brenda....we can rise from the ashes anew!

Dana in Connecticut

Sunday, November 26, 2006

Going Forward, Taking Opportunities

Roy and wife Carol live in Ireland. Roy developed GIST in the year 1998 (originally thought to be leiomyosarcoma). In this message Carol relates how cancer has given them and their young-adult children an increased appreciation of life and its opportunities......

This is probably a bit of a strange mail but I just wanted to share.

Our youngest son, Martyn, just sent us a text to say how proud he was to have us as his parents and how much he loves us.

Martyn is 21 and living in England (we live in Ireland). He has just applied for his visa to go to Australia with our daughter Wendy, who is 26. They are going for a 12-month working holiday and are really hoping to love it as much as they have dreamed so they can stay longer.

It was a huge decision for them as they were torn about being away from Roy in particular because of his health. But we encouraged them to go off. Roy remains stable and has a fabulous outlook on life.

My dad, the only Granddad they knew and loved very much, passed away two months ago and it brought them up short-because Wendy was there the day he was due to go back into the hospital after a night at home and was witness to him having had a mini stroke. She was so good with him, encouraging him to breath and chatting whilst the ambulance was on its way - all the time knowing that he knew his time was short. She saw him recover enough to go home to England but with a heavy heart. And it was Martyn who had the last proper conversation with Granddad before he died. Granddad told him all he wanted and prayed for was for Martyn to be happy in life and live it to the full. And he assured him that everything would work out just fine and not to forget his faith. They held hands and cried together - it was wonderful and heartbreaking all at the same time.

And these two episodes were the catalyst that kick started them back into going forward.

Sometimes the curse of illness is we find ourselves putting off those things which we had planned 'just in case we might not feel up to it'. Not everything has to cost lots of money. Like us on Sunday, instead of walking locally we drove just 15 minutes up the road and had a picnic in the car with the dog - a howlilng wind held us there- but it was lovely. We wrapped up warm and walked up to the waterfall and back again.

So I want to share the pride I feel to be wife of Roy, mother to our 4 wonderful children (yes I am biased!!) and proud to be members of both support groups of incredible people - no, FRIENDS, across the globe. You never cease to amaze with your courage, positive attitudes, knowledge and love which you share so willingly: traits I wish for my children throughout their lives.

Carol and Roy Jones

Wednesday, June 29, 2005


On 6/28/2005 Vicky Vorhauer writes...

My sister-in-law called at 10pm Sunday night to invite us to come catch fireflies in her backyard. My first inclination was "it's late, the kids are almost in bed, Randy's tired, lets plan it for another time" but then I felt that nudge that reminded me that I cannot always plan and control the future, I need to stop and enjoy my present.

For me this has been one of the blessings of Randy's GIST. It has made me more aware and deliberate in my choices. I take less for granted and in doing so I am continually blessed. While the pain and sorrow I feel about what we have lost or may lose in this journey are sometimes acute, God has balanced that with great joy and happiness for the innumerable blessings He has given. This gives me hope for the future.

Contrary to my initial protests, we went. There were hundreds of twinkling fireflies in the trees, on the ground and flying. It is hard to describe but it felt truly magical. So, long story short, we took 2 baby food jars, 2 sleepy kids, and 2 tired grown ups --- caught fireflies and made memories.


On 6/29 Bill replied...

You brought back some old memories for me. I remember catching fireflies in the summer and it was a lot of fun.

You kind of worded things how I see events as well. I hate having GIST and hate taking Gleevec. I hate no knowing what the future really holds. However it certainly has made me so much more aware of the blessings of each and every day. Simple things that I used to take for granted are now opportunites to be thankful.

I wake up daily and thank God for allowing me that and when I go to sleep I am always thankful for having had another day. Simple pleasures become great pleasures. I will enjoy things more fully from now on. So in a strange way, I am even more blessed than I have ever been.

Keep making memories.


Sunday, April 03, 2005

Good things can come from cancer too

On 4/2/2005 Susie in Oregon posted...

Hi Everyone,
I was wondering if anyone has experienced POSITIVE things from having cancer? I have. I have only just realized it lately. I'm getting ready for my second year in the Relay For Life with my sister leading the way like last year. We had never been close until I got cancer. I lost my father when I was nine and my Mother has recently had colon cancer and is doing wonderful at 78!

This year in the relay I will be walking the survivor lap with my sister, daughter, son-in-law and new grandson all hand in hand:) I will buy luminaries for all my GISTMATES and will be thankful for Gleevec and all the support and love I have received and hopefully given as well. I am thankful to report that I seem to be tolerating the higher dose of Gleevec in the past few days and am thankful for that also.

With all the fears we have all been posting, and believe me, I have my share, I just thought of all the good things too. I hope you all have the same kinds of feelings and are comforted by them. My best wishes to all who fight and keep trying to do the best they can,

Pam responded...

Dear Friends,
I was very moved by Susie's letter because I can really relate to what she is saying. At the end of July I will be on adjuvant Gleevac for two years. At that time I believe I will go off the medication. Of course this could change depending on (1) what information, if any, is made available about the adjuvant trials and (2) what my gut says at that point. For me the Gleevac has been my saving grace. I have this sense that the cancer will stay away as long as I'm on the Gleevac. This has no basis in scientific anything, just a way for me to go from day to day without being paralyzed with fear. When and if I go off of Gleevac my feelings will probably change, but I'll deal with that as it comes.

What struck me about Susie's letter is that positive things have also come out of my diagnosis. First of all I know that Gist can come back at any time ( I'm at high risk because of a large tumor and high mitotic rate). So I don't believe that I have all the time in the world to do the things I want. The disease caused me to retire from a job that was very stressful and led me to do something I've always wanted to do. I now have a private practice as a Counselor. I love it!!! The disease allowed me to be there for my brother during his last difficult months. The disease allows me to be available to help my elderly in-laws with medical appointment and various kinds of support. Maybe more importantly, this disease has shown me how blessed I am to have my husband, my girls, my family and friends in my corner. I hope I don't sound too Pollyannaish. I have moments of despair, anguish and self-pity too. But the bottom line is I'm alive!!

Thank you my cyber friends for the warmth, caring and concern you show for each other. That is probably the greatest blessing of all.
Pam L.