Monday, July 28, 2008

bouncing days

I swore I would not become like this...........................besides, I have always been a 'cat person' rather than go moggie about a dog!

This week especially, I have been watching little Sophie who is now only 6 months old, hopping her way through the days. This little dog does not run, she hops or rocks, keeping her back legs together and bouncing along wherever she goes. She is not slow at all and gives Allie a serious run for any toys and tidbits..

She bounces around with such unbridled joy, ears flopping, rear end swinging around the corners and I swear she has a smile on her face! She has no respect for the pee pee pad at all, nor is she particular about what she considers a toy. This has made us lace all electric wires with hot pepper sauce.

This little bundle of doglet bounces around, pleased with herself at whatever she does or does not do. She will pee on the floor right behind me and bounce around like tigger on a big spring, panting for her treat with those sparkly little eyes and wagging tail! Today I caught her running off right after actually peeing on the pad and when I called her back for a treat, finally, I could almost hear her thoughts - 'who? Me? Really? REALLY? Whooo hooo!" And yes, she came back on a 'super bounce'.

What a way to live your life - so assured that you are loved, accepted, ok, the right shape, the right size that even though you walk funny, you are still loved, played with and plainly adored......... Right now matters, not yesterday, not tomorrow, heck - not even an hour ago!

Ok - so maybe I am concentrating of different things lately - but it sure makes the pcr wait time pass by with a gazillion smiles.

love and light
with a special dose for Kay, Adrian and all their family and friends..

Monday, July 21, 2008

One little ant........

And so the waiting has started again, but this time its totally...........well - I have honestly not even thought about it apart from every now and again feeling mildely surprised that I have not thought about it. Interesting, and I am sure it will change sometime - but while this peaceful state lasts, I am just going to enjoy it.

The other day I was going through some old photos and looking back over the years pre cml. I can only be incredibly thankful that none of us knew this was coming down the pike - all those years of smiles, casual living and belief that we were all in control of our future.

I have many feelings when looking through those photos. I tried that just over a year ago, and could not look at photos of Steven of years past without tearing up and actually hurting inside. Now I find that just have this deep, base feeling of 'I cannot lose this child', but that I can look at them all and smile again.

I never thought that I would be affected by looking at photos like this, especially as all is going well, and was even a year ago. Just last week, before I looked through the photographs, a lady came into the store and was telling me that she had lost her mom a little over a year ago and it was only now that she could look at her photos again..... now I understand. Funny how much we dont understand until it directly affect us personally. Like saying that 'when I have kids, they will never ever walk around with unbrushed hair!" Ha! I really appreciate those times when I find new understanding - each one is a lovely moment and a deep knowledge that I am truely growing inside.

Isn't it strange how when we look at a picture of someone from long ago and we miss them - we reach out and touch the photograph, stroking it and not wanting to break that contact. Makes taking those photos even more important in the good times.

The the next two months are going to be busy months..... its my mom's 80th birthday on the same day that my daughter and her husband arrive from California for a 10 day stay. During this time I am going to be very busy orgainizing a blood and marrow donor drive to be held in mid October as well as still working in the shop and getting in as much time with my youngest as possible.

When Joleen leaves to go home, we leave for another road trip. I have this big urge to see the northern lights, Aurora Boreallis, again. So we are headed up to the Icefield Parkway, Canadian Rockies area to see what we can see. We should only be gone around 3 - 4 weeks this time as there will no doubt still be much to plan for the donor drive.

Ok - more about the donor drive. I have wanted to make a real difference and I think that Adrian has done a totally incredible job of hightening awareness and changing things that will save many, many lives, beyond even his expectations. His actions might even save Steven's life one day if he ever needs a marrow transplant one day.

So - what to do? Pay Forward in the best way I know how!

We already have the place to do this - the ice cream shop, Kays Kastles, right next door to us has agreed to let us use their parking place for the blood bus and a few tables inside for the marrow donors. This is a big step out of the way and now we just need to tie down a definate date and get the ball rolling. I am hoping to get the radio and tv stations heavily involved too both before and during the day and already have the local newspaper lined up to do an educational article and then hopefully another one the week before the drive.

If I think of what kind of impact I would like to make with this, obviously I want the biggest and the best response possible, but I have to look at it in a way that even if only one person gets added to the marrow registry - it might just be that one that will save a life and all those around that person.

The cost of getting on the marrow registry is $52. BUT - if we hold a combination blood and marrow drive, the registry fee is waived! So I really hope to use this opportunity to get as many people on there as possible who would otherwise not have done it because of the fee.

So - as we all know, one little ant cannot do much on their own, but when we belong to an army, anything is possible.........and I now consider myself one of "Adrian's Army" and know that as long as we try, we will make a difference in some way.

Thanks Adrian, through your actions, especially in the face of your situation, you have kicked my butt into action.... I will forever be grateful :)

If any one has any ideas, advice or is close enough and wants to help and be a part of this - please contact me, leave me a message, note or rattle my cage in any way you know how.

love and light

Thursday, July 17, 2008

Living your Dash.....

“How Do You Live Your Dash?”

I read of a man who stood to speak,
At the funeral of a friend.
He referred to the dates on his coffin,
From the beginning.... to the end.

He noted that first came his date of birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That he spent alive on earth...
And now only those who loved him
Know what that little line is worth.

For it matters not, how much we own;
The cars... the house....the cash,
What matters is how we live and love
And how we spend our dash.

(thanks Kay)

love and light

Saturday, July 12, 2008

Feeling creative.......

..........can you tell?

These are quiet days in my mind. Lovely full and lovely days. I have big plans to share soon, but for this weekend, I am going to kick back, relax and enjoy the wonderful weather - and plot and plan just like these two seem to be doing :)

Love and light


Sunday, July 06, 2008


I have been doing a lot of thinking lately. So much money is collected to go towards finding better treatment and cures of cancer - all sorts of cancer, which is good and for which I am personally tremendously thankful. But a person wanting to become a potential donor has to pay to get on the list. Somewhere between $50 and $98 is the cost to do this. To me, on many levels this is just simply and totally backwards. Many, many people who would love to help in this way, simply cannot because of the cost and this means that there are people waiting for a donor that will die because of a relatively small fee.

Just thinking about this fact gave me an even deeper appreciation of donors. Yes, I know that some join the list through drives and sometimes the fee is waived for the potential donor - but it's still paid by someone and that is most likely the family holding the donor drive in the hope of finding a donor for someone dear to them. The potential donor still has to actively do something about getting on the list. It's not just checking a box on a driver's licence application, it's not just saying yes to a vague idea, it's not something that will give any monetary reward. It's a purposeful action, giving of themselves in the hope of helping someone that is more than likely a total stranger, and paying to do so! How awesome is that?

I cannot even begin to imagine the horror of being told that Steven's only option left is a transplant, but that there is no matching donor. And it's not just Steven - it's anyone I know.

So, instead of putting our monthly collected amounts in the big "Cure Pot", it will now be going towards getting people joined up on the donor registry. A good many people don't respond to drug treatments and transplant is the only way for them. They need a donor. They need to deal with the 'now' of cancer in their life and I hope this would help someone with their 'now'.

To all the donors out there - any type - blood, tissue, organ and marrow........ I know you are awesome people. You not only go above and beyond what is required of a human being, you inspire others to do what you did. A simple "thank you" can never be enough.

So, come to just one more person about becoming a donor - Pay Forward, be a part of someones future. Tell them that it's just a mouth swab to get on the list and can be as simple as a blood draw for the donation if ever called. It's not horrific, its not painful and they will gain more than they give in the long run. Just one person. One person can really save a community.

I joined the donor registry through Amy's Army Here is someone real, a little girl, still waiting for a matching donor. Maybe you or someone you know can help? She is just one of many that are waiting and hoping.............

love and light, hope and thanks

Ok, I give up....

No, no - not giving up on anything big. Just giving up on the idea that I don't get anxious around PCR time. I have tried to tune in to my thoughts and feelings this past week, patterns and level of irritability and notice a definate increase of touchy-ness. I feel aggravated, wanting the time to go by till the test comes back, I find myself looking at things on a different level and sometimes going over the early days after diagnosis again. Those 'scareds' are never very far away at all and are only too keen to walk around with me at the first chance. Those thoughts are like living things hanging onto the railings of the safe box I put around my mind at times - at the first sign of that gate opening, in they come. And it takes some work sometimes to get them out again!

We are planning a trip up north again, probably to Banff and the Icefield Parkway, in late August. We really want to see those northern lights again. And as much as I plan, one calculation keeps on coming into the equation -when will the PCR results be back? Before we go? I HOPE so! Not that there is anything I can do about it anyway. If the results are great I know I will leave with a singing heart, if they have wobbled again, well - we all know that feeling that sits firmly in the heart and head. But even then, there would be nothing I could do about it anyway. Just wait another month and re-do the test. SIGH.

It seems to me that it's in mama-nature to worry about this stuff - no matter that we can make a difference or not. Sometimes, when everything goes so smoothly and the tests come back great and it would really be silly to worry, and no test is imminently looming - then I tend to let go the information I have learned about cml. Yes, of course it's still there, but sometimes when I read something - it's almost as if its clearer, as if its simpler or easier to understand. This happened just the other day - I found this explanation (below) and it put it so well that I hung on to it:

Chronic myeloid leukemia is a cancer that originates in the immune cells. It affects approximately 4,600 people annually in the United States. In the case of CML, large numbers of young immune cells do not mature, resulting in an excess accumulation of these cells. These leukemia cells then crowd the bone marrow and blood, suppressing formation and function of other blood cells normally present in these areas. In addition, the leukemia cells cannot perform their function properly, leaving patients susceptible to infection.

Chronic myeloid leukemia begins with a chronic phase, during which few or no clinical problems occur. However, when left untreated, the chronic phase progresses into acute phases; these phases, called the accelerated and blastic phases, are characterized by fast-growing and aggressive cancer. Patients reaching these acute phases have a poor prognosis for long-term survival.

Philadelphia chromosome-positive (Ph-positive) CML refers to the majority of cases of CML in which a genetic abnormality, referred to as the Philadelphia chromosome, results in the constantly activated growth of cancer cells. Roughly 30% of adult patients with acute lymphocytic leukemia (ALL) also have this genetic abnormality.

Gleevec is a biological agent that binds to and slows or stops the uncontrolled growth of cancer cells with the Philadelphia chromosome genetic mutation.

Maybe when I first had to learn about it, life was too scary to hear something as 'simple' as this - I am just glad that its easier now.

Steven is looking great, having fun with his life, full of smiles and its a great probablility that I spend more time thinking about his cancer than he does. I try so hard not to let the worry get to me. I know that many people would absolutely wish for only my level of worry in their lives, I know that worry is not going to make any difference to any test result or the future or the past. But does it stop? Nope....

I do think that I have a better control of it though and I think that to deny that worry will be denying a big part of who I am. So - I give up. I will worry, I will accept that worry and make sure that I keep it in the right perspective. I think that the worry in our lives keeps me on my toes, keeps me appreciating life in this very moment with everything in it, helps me make more good memories and keeps me aware that everything is so tenuous.

So I will face this waiting period for the next results with even more appreciation of what I have in my life..........
love and light