Tuesday, October 30, 2007

Easy, by comparison.....

The wait has not been bad so far this time at all. It may be because we were still travelling for the first week of the three week wait as well as settling back in at home, doing some pre winter renovations - new windows. Also, there has been some absolutely wonderful news regarding two people going through transplant, another about to head that way, as well as some really, really sad news.......

Two guys, one here in the USA, Shane, and the other in UK, Adrian, have been through their transplants and both are doing feally well right now. Keeping in contact with their mom's (or mum, in the UK :-)) has helped me so much keep things in this neck of the woods in its correct perspective. It's very difficult to worry too much when firstly, Steven looks great, and then you hear of infected PICC lines, injections into stomaches, gvh disease attacking the skin and extra treatments after going through a transplant and so much more. I feel so very blessed on a daily basis when keeping these people in my heart and mind. And Lea, heading towards a transplant and keeping herself so positive and full of fun....... wow. All this is so incredibly helpful. And then, when I look past all this and bang a really "I am sorry for myself" email to Debs, she is amazing enough to be honest with me, kick my butt as asked and send a hug, all in the same email. Again, I am so very fortunate.

And then the devastating news about Penny's mom. Last week, at the anniversary of Penny's passing, her mom was also diagnosed with lung cancer. If you pray, pray for her and her family, if you send positive vibes, send tons to them. Either way - keep them in your thoughts. Please.

It's been almost two weeks since the pcr blood was drawn for the test and with all this happening, I have barely even thought about it. I did find that when we got back home and I again had good internet access, and set about catching up on the support boards, I found that I felt sad, worried and down. So I simply gave it a break for a few days and now only allow myself a little reading every day - kinda building up again.

Basically, Steven is doing great, I am doing great, the vacation was wonderful and I have 6500 photos to sort through. I refuse, REFUSE to worry this time, too much anyway. Many times I find that this worry is a choice. It is definately a distant rumble of thunder in the background of my life always - but at times it is a choice as to how much quality time I give it....... and its scary how much time I do give it!

Thats not to say that I am not going to worry, freak or become 'frilly' again - maybe even soon, its just that I realise that I can control it to a certain extent. What is really, really strange is that at times I don't want to keep it out, sometimes I don't want the worry to go. Sometimes its a way of dealing with stuff. Hopefully that will pass sometime in the not too distant future, but for now I do think its a part of the process of dealing with this all.

So Shane - keep doing so wonderfully well; Adrian, you too and keep up that awesome blog (http://baldyblog.freshblogs.co.uk/); Lea - you go girl - you give me untold strength and hope and Pat - sending hugs and love and wishes.........

Love and light

Tuesday, October 23, 2007


It's been a year today, 24th October. A year since Penny passed away. That just does not feel possible, it feels like yesterday and yet it feels like a lifetime.
I think of Penny so often and feel the effect of knowing her every day. She was one special lady who left wonderful, positive ripples through many people's lives and a very big empty spot. I miss her tremendously.
If you have not already read her blog, do so - its incredible. http://pensclc.blogspot.com/ and go and check out http://www.penniesforcancer.com/.
My heart goes out to Michael as well as Penny's family, her parents, sisters and children. No words can make it easier.......
A year. Wow.
Michael sent this memorial - it's going to be in the papers up there so I know he won't mind me putting it here - it says so much........

In my heart your memory lives
Always gentle, kind and true;
Each and every day, dear Penny,
I so often think of you.

You were my soul's companion,
And cannot be replaced,
And as I walk through life alone
I miss you more each day.

My dearest one, I loved you
In a very special way.
And if I had one lifetime wish
One dream that could come true,
I'd pray to God with all my heart
For yesterday and you.

As angels keep their watch up there,
Please, God, just let her know
That we down here do not forget,
We loved and miss her so

Michael, family and friends

Friday, October 19, 2007

Floating Oranges

We are in Roswell, New Mexico - yes slowly winding our way back east and home again, but not quite ready for that yet. Its been wonderful out here, seeing everything we have, experiencing the open country the sights that not everyone gets to see - especially the face of my child when we surprised her! That still gives me goosebumps :-)

I have been trying to put cml at the back of my mind, actually I have tried to put it right out of my mind - but have you ever tried to keep a dozen loose oranges under water? No matter how many you manage to get under, another is either coming back up or already floating again. So it is with the thoughts going through my mind. Everywhere we went, something made me think of Steven, cml, his strength and abilities that he has and those he has yet to learn. Some of those thoughts made me smile and breathe easier and meet my challenges head first and with strength and others had the ability to make me want to stop. just stop.

Have you ever just wanted to stop? No drama, no pain, no more. Just stop. Its not a dramatic feeling, its not a sad feeling, its just a feeling of......... literally wanting to stop everything, internal and externally. No its not bred from depression or something bad happening, not from any drama or bad expectations at all. It just happens every now and again. I remember clearly how very often that happened in the first months after his diagnosis. I remember riding the bicycle down the road and ....... well, just wanting to stop, not just the bicycle, but everything. But I always knew, and still do, that that is just not an option. But it does not stop that feeling. It's just a feeling, one that does not last long at all. It's as if a very heavy blanket is thrown over me and the effort is too much even to breathe or think. And then it passes.

Anyway - it does not happen that often anymore, but even though we have been having an absolutely awesome time away from home, that is one of the heavier oranges that popped up!

I have experienced so many more positive thoughts and happenings, especially these past three weeks, and I wonder why there is a heavyness tonight?

Steven's birthday was this week, Wednesday, and his pcr Thursday. It was a tough decision to be out of town on his birthday, but I felt that it would be good for him, for us and thats how it worked out. He also had to fully sort out the pcr test this time by himself. He had to order the kit from OHSU, keep it cool, get the pcr, fill in the forms and overnight it back. Now I know that this sounds really easy the way I wrote it, but even after doing this for him for the past 3 pcr's, its still nervewracking to get everything just right. He did great until after he left the doctor's office and noticed that they had not filled in the paperwork! So he called me a tad frazzeled and in the middle of a rough day at work too. We walked through the form, filling in what we could , deciding that OHSU and his doctors office had all the details we didn't so he wrote a note giving them the local oncologist telephone number in case of any questions and referring them to previous paperwork sent in.

I hated hearing the frustration in his voice and called back later that night to deal with lighter things - it was good to hear him laugh again.

It's funny how a long, lonely, open road can make me think of cml, or a gently meandering river, or a towering orange cliffside, or the motion of a boat or the dead, dark silence of a night spent along the side of the road in the middle of New Mexico. A falling star, a baby boy a strange kid calling 'mom!'. They are all normal things in life, but I find a deeper meaning in so much of it. Maybe I am going nuts - but hey, then I am going nuts :-)

I also thought that the wait would be easier since we are not home and not in the normal 'wait mode', but now I see that that does not make a difference at all. The waiting for the pcr results is the same whether we are out here or at home. I am really keen to see these results as the last numbers were really close to the previous ones and I reeeeaaaaaallllly want to see a goodly drop in numbers this time.

Why can't I take this from him?

And I have just remembered something ......... about 30 miles out of Roswell, we came across a runner, pelting it out along the side of the road and I felt so humbled. If this man can do this - then I can deal with my pain regarding Steven and his leukemia.......this man has two false legs and is by no means stopping his life! I still want to be able to take this cml from Steven...... I bet any mom would.

And so the wait has started and I promise myself that I will deal with it better this time. We have to keep promises, right? :-)

Love and Light

Saturday, October 13, 2007

A hole in the rock

Its been an amazing couple of weeks so far - and so many thoughts twirl through my mind a lot of the time. Driving on endless straight roads do that to one - opens the mind to thoughts that are often blocked out or interrupted by the activities of 'normal' days.

The one that keeps on bouncing back into my mind is the thought that goes around that enormous, awesome rock at the Channel Islands National Park. It's this strong, non-moving rock, a part of history that has been there way before any of us and will be there long after us too. But in this rock is a hole. A hole that lets a bit of the beautiful scenery from beyond seep through to us. I photographed that rock and that hole many, many times, all the time with this idea forming in my mind.....

This is a solid rock. Its good. But there is a hole. Is this bad? No! Its good.... It does not take away from the awe of the full picture - actually it significantly added to it. It showed some beauty that we would not have seen otherwise. It made me look at not only the rock, but what was this side of it as well as beyond it. It also made me look deeper in my soul for a meaning to some things in life. Like cml in my kid.

Cml is the 'hole' in our lives, and it has opened up my life in an incredible way. Sometimes it feels selfish because my life has improved through this cancer in my son. No - its not something I would volunteer to happen, not something I would ask for or choose if I had the choice and I would happily have my life 'unimproved' if it meant none of my kids got cancer of any type. But now that its here - it's honestly introduced a deeper dimension to my life. It's made me grow up, made me see my kids, my life and life in general in a much more real way. I treasure the small things in every day much more than I did before. Yes, it also makes me more cynical, more afraid, more vulnerable and frankly, scares me to pieces at times - but the big picture is like that rock - it's more beautiful and remarkable with the hole than without it.
There are so many lessons in life I see all around in these awesome places we are visiting.... the long lonely roads always lead to somewhere -no matter how long they are, the storms always give way to the sunshine again and no day is ever guaranteed to be totally good with no glitch in it. This is life. No guarantees, just a muddling through as best we can and hopefully taking in as much of the wonders as we can along the way.
Ok - back to earth. Steven's next pcr test is due on Thursday this coming week and then that wait starts - another looong endless road. :-) But it will find its end too. Anyway, Steven has ordered the pcr kit from Oregon and will do the whole process without mama peering over his shoulder this time.
I am not ready to totally let go this process of taking care of the cml part of him, but realise the absolute importance of him knowing how to sort it out himself. I am not going to live forever like he is! It's probably good that we are away from home and this pcr due.
He will also have his next cbc results on Thursday and I am keen to hear that they are all exactly where they should be again. Wednesday is his birthday and I wish him totally excellent results, pcr and cbc.
Here's a big cyber hug for Kay and Diane, both mom's of cml-ers very recently out of transplant. You are so often in my thoughts.
Love and light

Sunday, October 07, 2007

Out of town.....

We are in California at the moment :-) We came out here to surprise my daughter who is a Marine at 29 Palms. What a success that was - she did not suspect a thing at all and we had an awesome three days chatting late into the night and all day long. It was difficult to leave, and we will definately not let so long pass again before seeing her again!

We have had no cell phone signal, so I have not been able to get the results of Steven's latest cbc tests done this week. Yes, yes, cml is still on my mind, but I have to admit that even it was pushed to the back a good many times this past week :-)

Here is a photo of the moment of surprise with Joleen. What joy that was! We got all the way to her front door without her suspecting a thing even though we had chatted almost every day since we left Chattanooga!

More later - now to sleep.

love and light