Saturday, May 12, 2007

Circle of Hope, Circle of help

This is really a very weird world, or is it just me? This week, with no immediate pending tests and nothing at all to make me lay in bed at night with saucer-like eyes at all, I actually started missing the early days of this cancer road. Now that shocked me to the core, but I have to admit that the intensity of life was incredible, everything vibrated all the way to my bones like overtight guitar strings. The frantic research, the insatiable need to find others with cml and other forms of cancer, to find out how one copes with this disease in my kid, to find out as much as I could, to try to stay on the sane side of life or at least appear half way ok. Penny and I had just met and we were starting up www.penniesforcancer.com, and learning how to say hello and goodbye at the same time. Steven, and the rest of our world, was learning how to relate to each other in this new life, this new reality.

Negotiating the medical terms and world of doctors and hospitals was, at first, tremendously scary, learning how to build websites and blogs and photo albums too accupied my mind at times. The trip to Alaska was turned into a fundraiser and everything that went with that, the idea of being away from Steven for two months, organising the house, shop, doctors, trip, kids and still having time over for Frank who took back seat and was the anchor I so badly needed. So much took so much energy and emotion, yet there was an unending supply of it. My stomach heaved, the tears flowed, my heart actually hurt at times and I even lost a few pounds!

Looking back, I know that I was so incredibly alive in spite of feeling as if I was dying inside, slowly and awfully. Its almost sad that I did not recognise just how alive I was at the time!

So how can I say I miss it? All in all it was a tremendously vibrant time - and yes, on some levels I miss it tremendously. I miss Penny and the laughter we shared despite, and at times because of, cancer. I miss the alive feeling, although I only recognised this feeling after the 'main trauma' was over. I know that I can look back on this and smile only because Steven is ok. Please God, may it stay this way!

Some people have their reasons for not sharing their story, sometimes not even with close family members and I send them all a very deep hug. I know that for me, its the people, the sharing that has kept me sane, kept me going. Those that share their cancer stories with me in the shop; those that put that dollar or three in the jar for the LLS that sits on my desk; those that write on the support boards or blogs; those that email and call me out of the blue with their happy news regarding tests of their daughter/husband or friend; those that are going through transplants and just as much - those that don't even touch on the cancer subject but who I know are there for me if I need them... These are some of the people that help balance my life, who are the glue for my soul - they have become the fibre of who I am and how I can and do give back when I can. There are so many people that pick me up without even knowing that they do and I am grateful for each and every one of them!

So here I am, another two weeks from Steven's next PCR that will again be sent to OHSU - the kit is ordered and will be here in time, I will not be going with him this time - its just a blood draw. Its the wait after this that is the breaker..... anyway - I got off track there. Here I am, in a really good place, able to give more energy to my life again, to my two daughters who have had to be very patient with me over this time.

I was thinking just the other day - so much has changed in a mere 18 months.. One child got cancer, one joined the Marines and got married, one got married and has a daughter, making me Granny Annie; we did 11000 miles to Alaska, have redone much of the inside of our house, have the pitter patter of four tiny little paws in the house too and we are all still smiling, despite the sudden appearance of a goodly bit of gray hair too! And the most incredible thing is that even though we now have cancer as a direct family member, we are all very grateful for the things in our life, we can all recognise that in a weird and wonderful way, this cancer has enriched and definately deepened our lives in a tremendous manner.

It's all in the people - that Circle of Hope - that Circle of Help...........THANKS! :-)

Now I am rambling. I am happy, I am thankful and I hope.......... oh, I hope for so much.... And I KNOW there will be a cure for cml!

Love and light
Annie

2 comments:

Anonymous said...

Dear Annie,

Thank you so much for taking time to do your blog.Great Job!! I read it often. I can relate to you so much because my husband was dx with cml Jan 2007.

I feel your pain and your strengh.
Your friend in
Kentucky

Living With Cml said...

Hi there my friend in Kentucky!

I am sorry to hear about your husbands diagnosis and hope he is doing wonderfully. Have you joined the yahoo Asia Support group yet? They are wonderful and SO helpful!

Thanks for your comment - see? thats what I mean about that circle of help and hope. You help me too even though I dont know you.

If you ever feel like contacting me directly, please feel free to do so via the email link on the blog. I am totally open to that and would love to chat to you.

Thanks again
love and light
Annie