Saturday, May 26, 2007

Positive thoughts......

The UPS truck stopped here again today - but we had ordered nothing so for a few seconds, we were a tad puzzeled. And then out came that square box with BIOHAZARD written on it. Steven's blood test kit for his next PCR next week. Funny how a box makes my blood pressure rise. So now it sits in the little refridgerator in the shop, rather like a pouncing mountain lion whenever I open the door, with cowering bottles of water lying beside it.

There is something wrong having this stuff in my fridge! In anyone's fridge. The months have rolled around so quickly since the last PCR and there were a few moments here and there where I could almost imagine life without the worry of Steven dealing with cml. Almost. But now its back again, and although the test has not yet been done, the waiting has definately started. The stress is already building and I am determined to beat it this time! I will, I will........

Steven's March PCR was slightly higher than the January one but we think and hope and believe that that was due to the change in labs. So this test is one that we would reeeeaaallly like to see a definate drop in readings....... and we will get the results a month from now. Yes, a whole month. But I won't worry, won't fret, won't bite my nails or think about it too much........ oh suuuure! I just hope I won't do all that as much as I did last time - hope that my ability to cope with this is getting better. I feel that it is and I hope it gets better and better because that would mean that Steven would be doing just superbly! :-)

He is doing great right now, working hard and taking the summer off from college and still smiling that incredible smile. This young man is really my hero.

Now, on a very sad note. I had been following Davo's blog - he had cml and was from the UK. This Memorial Day morning he passed away. I did not know this young man personally, but through his writing and his blog he helped me see that I should see Steven first and then the leukemia. As hard as that is, Davo showed me how important it is to keep seeing the person first. His poem, the one that is a few posts below, really made a difference. Thanks Davo - I will always remember you, and when the cure arrives, I will keep my promise and send you a funky balloon!

I thought so much about Davo's mom these past few weeks. How she must be hurting, how she must wish so hard that this was not happening to any of them. I cannot begin to imagine how to deal with that. I don't want to even try to imagine, so instead I just try to send gentle thoughts across to them all... so little when they must be hurting so much.

And then I found that book, The Secret, and then a friend sent me the original un-dumbed down book from 1910 and the more in depth one from 1912. Its all about positive thinking and is incredibly sensible reading....... Only positive thoughts allowed from me for now - so you all get tons of positive thoughts - duck! they are coming! LOL

So, life is proving itself to be normal. Ups and downs, hurts and happiness, wins and losses, and never knowing what is coming next. This is life, and I still want to live it. Thanks for those words, Bea - they are so true!

Love and Light

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, 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

Friday, May 04, 2007

ways of thinking.......

The other day I found a blog written by an incredible young man. He wrote this poem below that made me see things in a much better light. When Steven comes in the door, I do my 'mother-scan'. I check for signs of the leukemia, I check for symptoms and side effects - and then I see my son. Now, thanks to Davo - I see the importance of changing that, and changing it now. I need to see my son in full - but as Steven first, not leukemia first. Thanks Davo! I think you are incredible, for many reasons.
(Davo has given me permission to share his poem - I hope it helps someone else as it has helped me)

Thursday, December 7, 2006 - by Davo

You look at me

But you don't see me

You see a pale face

A bald head
A scar.

Look beyond my hat.

Look beyond my illness.

Look into my world.

See the many pieces,

not just one.

A complete person.

Open your eyes

And see me. Visit Davo and send him a hug, a warm thought, a prayer and strength for the road ahead.

I have left keeping on top of Steven's test results alone for a while - now I am back again - gotta be... his last test was great but the bigger three month test is looming again next month, the PCR - no rest with this cancer. Every three months the test tells us if life goes on as normal or gets turned on its head.

January result was good, March test was a little less good but we started testing at a lab in Oregon, this next taken in a months time is kinda critical in telling us where the cancer is going...... my nerves are already getting raw from it again. The blood will be drawn at the beginning of June and it take 3 weeks for the results to get back to us. My real hope during this waiting time is that the waiting does not tell on Steven as much as it tells on me.

Tonight I am in a 'patch' again.... I have to update the blog - and open my soul on there - it feels so selfish sometimes, not being the one with the cancer, but I want to keep it honest - from this mom's point of view.

PCR results this year so far are:

5th Jan '07: 0.019%

5th March '07: 0.076%

We really really want the next PCR to deliver a number below this last one.......So far Steven has only a 1.7 log reduction after a year of treatment - we would love to see that 3-log coming his way. If not, the treatment will be changed/altered and then I am sure we will get that much sought after 3-log.

I have found that reading other blogs help me tremendously. Jon G was diagnosed right at the same time as Steven and when I read how well he is doing, it puts the hope back in a wobbly day. It's absolutely wonderful how each person out there helps others, so often without even realising it. Read Jon's blog at:

This circle of people dealing with cml is honestly amazing - I could never have imagined the help that is out there 24/7 - in blogs, posts, news groups and the wonderful people that email and call.

I had so much to say - so much to get off my mind, but with losing all my writing not once, but twice! tonight and because I have to be up really early tomorrow for painting class again, I am going to close this off and hopefully tomorrow I will remember what it is I wanted to write here tonight :-)

Strange - I started writing with a heavy stone in my stomach tonight, thinking of those PCR's, and after reading that poem again and pouring the worries into words, I know I will sleep well.

Thanks again Davo. You remind me of Penny - your incredible strength and concern for others and your ability and willingness to share, in a time like this...

Love and Light