HAPPY NEW YEAR!

Happy New Year........... :-)

This year is going to be...... well, its going to be another year that will be filled with love and laughter, scareds and angers, friends and frustrations and many wonderful times. Its going to be a year that I really appreciate my family, my friends and others special people that keep me sane and laughing and treasuring the things that are important.

Its going to be a year that I look at the big picture, that I see beyond illness and when I do see the sad and difficult things, I am determined to be better than this past year in giving a listening ear, a crying shoulder and a needed smile and hug. I am going to actively look for the good, the smiles, laughter and light - the love that is all around.

This is going to be a good year. This IS going to be a good year.

This picture is one that "my three chickens" got together to have done for me......I think its about the most awesome Christmas present I have ever received! When I opened it on Christmas eve, many many emotions hit me and I was reduced to a puddle of mushy tears. I am so incredibly grateful that Steven is able to be with us in such apparent good health, despite having cancer, I am a grandma and my youngest daughter got to spend an simply wonderful week over Christmas with us all.

What a simply wonderful ending to one year and beginning to another. So many things to be thankful for, so many things to look forward to. So many opportunities and so many good memories, even if a good many of them were born of sadness.

May 2008 be simply the best year yet!

Love and light
Annie

I wish you Enough.....

Here's wishing everyone a simply awesome, relaxed and very happy Christmas. May the New Year bring wonderful things......... Here is what I also wish sincerely for everyone - it was sent to me recently in an email and I think it says it just right. Here goes:

I wish you Enough

I wish you enough sun to keep your attitude bright no matter how gray the day may appear.
I wish you enough rain to appreciate the sun even more.
I wish you enough happiness to keep your spirit alive and everlasting.
I wish you enough pain so that even the smallest of joys in life may appear bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hello's to get you through all your good-bye's.

Love and light
Annie

Safe mode

I have felt different for a good while now, not quite understanding what it is I am going through, nor understanding why. But I think it goes like this - I was in 'safe mode', as Lottie put it. I found myself staying away from the support boards, not responding to emails as promptly as I should and even forgetting to answer some! Thats just not me...... answering an email was like a ringing telephone - it's an automatic response to answer it! But the nights would go by, the clock ticking onward and my brain telling me to do something - anything. But no, I sat and let it all go by. For weeks.

Safe mode on a computer is a way to start it up without having all the programs engage or running - its a minimally functional status which enables me to get in and fix many problems in a computer. The machine runs, but only just. And as I am typing this, I see even more how I have been in that safe mode myself. I realise now that during this time, I have dug down deep, sorted through thoughts and worries, thrown out what I don't want around and secured those that I do. Something resarted me in 'normal mode' again and its wonderful. That something is a combination of many things coming from many people.

No, its not all roses and sunshine, especially if I venture outside with the near freezing temperatures early in the morning........ but its much better now. Just about a week ago I was thinking that I was in such a good place. I talk to a good few people online and all is going well with them, no drama's are happening, no bad tests, nothing in-my-face scary -well, apart from Lea's transplant and she is doing great by the looks of it! GO GIRL! Anyway, there I was, thinking that I am all comfortable and happy with my lot, that I don't really want to go the extra mile and that I can stay away from the support boards very happily. I could, and did, ignore cml, I pushed to the back of my mind the fact that we need to look at a differet doctor, yet again and shoved to the rear the fact that the next pcr is coming up again.... If I just ignored it all long enough - it would surely go away. Not! I did not want to read about someone struggling with a new diagnosis, a complication or someone dying from cml. I did not want to hear it, I did not want to know it, so I stayed away and missed out. Big time.

Maybe the break was good for me. I actually had a day or three when I did not associate cml with Steven. I could read Lea's updates, others blogs and not feel that squeezing heart in my chest, that fear. I simply cut the cord between cml and Steven. Laughing - it was good for a while :-)

Cml is still here though, and with it being here in my son who, by the way, looks wonderful and is looking forward to a week's leave over Christmas and New Year, are all the wonderful people that helped me along the first 18 months of this cml road. And new contacts helped me realise that I really cannot ignore everything I have learned nor can I ignore who I am now. A different me from two years ago. The me I am now is a part of this big group of people who are dealing with cml in some way or another. And with this group around me, cml is not all bad. Not for me, anyway. Obviously I am not speaking on Steven's behalf.

So, I am back again. I think. I am aware that I do have something to offer, and that I cannot stay in 'safe mode' and be of any help to anyone, or to me by staying there. It was not a good place for a long term visit at all.

I have no doubt that I will start up in Safe Mode again sometime, but I left a memo there for myself, reminding me not to stay too long again. :-)

In the big picture, I only have everything to be grateful for. Everything. Wonderful kids, husband, family friends and cyberfriends........... I am truely rich on a level I could never before have imagined.

So with these thoughts and very sincere and happy wishes to all the wonderful people in my life, we go into Christmas and scream towards another new year. What happened? It was 1978 just yesterday....... and oh, by the way - my mom keeps sneaking in and leaving her gray hairs on my shoulders! :-)

Here's wishing you all a wonder-filled Christmas and may 2008 be filled with love and laughter, health and happiness.

love and light and a really big thank you for all your support.
Annie

Gentle rivers........

How absolutely wonderful it is not to have anything specific to write on this blog! Wow. Did I ever think I would get to this point? I really don't want to say too much - you know, tempting fate and all that. But it really is wonderful not having anything at all, regarding cml, to write about. Sure, its always there, but its not a raging river right now - just a gently gurgling river in the very back of my mind. Soooo good.

Together with this incredibly good feeling is the knowledge that others are not so fortunate, that their Christmas season will not be as gentle. There are a good few many going through transplants and difficult times right now - and you are SO often in my mind. Adrian - wishing you the very best results from your photopheresis treatments - his blog is http://baldyblog.freshblogs.co.uk/ - some incredible reading from an incredible young man. Lea - hang in there girl, soon it will be behind you and you will be home walking Kimo again...http://www.caringbridge.org/visit/leamorrison. Lea also guest blogs on Erin's blog with Glamor Magazine - read her updates on both blogs and send her all the encouragement and well wishes you can. http://www.glamour.com/lifestyle/blogs/editor/.

Shane who is doing well - wonderful, wonderful news - you are almost at + 100 days and I LOVE success stories! :-) So many people who are travelling on this road with me - so many people who make me who I am - you are all so much in my heart and mind and thanks so much of the time.

Steven really looks great and is full into his Christmas shopping mode. A few years ago he started having fun with this past time and now I often get calls from a great variety of stores, checking with me to see if I thought his ideas are good. They always are! It's lovely to see this excitement still firmly in place.

Lisa, my middle child, is hosting Christmas Eve for us all this year for the first time. She is really enjoying motherhood and is so calm even when surrounded with her children and those she babysits.

Joleen, my youngest child, is flying in from California for 10 days with us from 23rd Dec till just after the New Year. Its going to be so wonderful to have her home again, even if it is only for such a short time. Boy, is it going to be difficult to say goodbye again!

It's going to be so absolutely good to have all three my chickens under the same roof this Christmas. I am so very fortunate, very blessed.

So, with a gently gurgling river somewhere in the distance, I wish everyone that the Christmas season is good to you all.

How absolutely wonderful to have nothing much to write about! Wow.

Love and light
Annie

Being Thankful

How does one express thanks in the face of cancer? How does one not!

There is so much to be thankful for this year, every day and every minute of each year - especially now. The main thing being that Steven is doing wonderfully and by all accounts dealing with this in his life in a very mature way. His blood counts are almost perfect and his pcr results are in a really good place too. But I can only really talk from my side of this disease. I cannot see inside his head or guess at how he deals with the day to day of living with cancer. So here I go - from my side.

Thanks for leukemia in my son? Definately not. But thanks for everything that has happened since he was diagnosed - Definately! For the growth in me, the courage found, the people I have met, the love shown and the international circle of support that has grown out of something so devastating in our family, just to mention a few things. My life has been enriched on a level that I would never have understood before. I have learned to cope with things that I just knew that I could not do before the diagnosis - now I know that I can and do. Yes, I am a very different person from two years ago. There are times that I honestly feel very angry and sad and sorry for myself (yes, myself too!) for having cancer in Steven. And I want to rant and rave and at times I do, and then I catch up on my reading, follow some links and stumble across someone who has lost someone they love or is dealing with something much worse or more stress. And then I rethink - Steven is here! Steven is doing well and I have to smile and breathe evenly again. And give Thanks.

So many times when I feel just down and out and low and miserable and cannot put a finger on it or shake it, it's then that one of the many people I have online contact with will drop me a line, not always necessarily to talk about cml, sometimes just to say hi and share some news or laughter or something totally unrelated to cancer in any way..... that's when I know how very fortunate I am. When they share their scared times, their low times, it yanks me out of my state of apathy and pity and puts me in a place where I can reach out and pick them up. It's a simply wonderful feeling to be able to share a piece of normal life as well, to laugh together, to just touch base with someone else who is walking in my shoes, and me in theirs.

When I am down and someone else shares their down times - it picks me up - it enables me to do better, to improve myself and become stronger! Hmmmmm Quite a thought! What an incredible circle of support and growth....

Many people think that sharing their bad times is not a good thing and this is an issue that I had a problem with, and still do at times, while writing this blog. Being open and honest about being scared, hurting, worried or angry shares who and what we are - and it can help someone else feel normal or ok and also give an insight into a situation that is not understandable unless you are in the same or similar situation. It is difficult to share these feelings and sometimes I mull it over for a good while before putting myself out there.

There have been many times that I have thought to stop this blog, especially now that Steven is doing so well. Times that it felt silly to keep on going. And then someone will write and tell me that by sharing my feelings, it has helped them. It is impossible to explain how wonderful it is to hear from someone else that absolutely 'gets it'! And then to be able to share and possibly help someone else breathe easier, feel normal or at least less alone. It does wonders for me!

Right in the beginning of this road called cml, I was worried at times, about how much of myself I wrote - I did not want to worry my family about my emotional state on top of Steven's response and results! Now I see that this is my story about something very deep and touching and I need to write it down - it's my way of getting it out. My family have learned that I will call them if I need to talk, so they can read this blog and know that I will be ok. At times I am sure they wonder about my sanity, but then that's nothing new :-)

Back to Thanksgiving. To Frank - for being there, for the love, support especially in my "frilly days", for making me laugh and helping me cry, for keeping life normal; to Steven for accepting your hero status in my eyes and for helping me through this in so many ways and for accepting my worry and mama scans; to my girls, Lisa and Joleen for understanding my divided and sometimes single-minded attention towards Steven and for drawing me into your lives even when I am drowning in this one at times. You are all so deeply woven into my soul and help so tremendously in getting me along this road.

I started listing the people and things I am thankful for and deleted the list again - geez, it got long! My family, the people, the opportunities, the love, warmth and support - for the fact that this Thanksgiving we have a full family and a full heart, once again.

A really special thanks and a really big hug to all the other Mom's out there dealing with cancer in their child. Also, a big thank you to all those writing their blogs and sharing your experiences - you all help me understand the road Steven is walking. I did not leave anyone out of my thanks - you are all in my heart.

Ok - if I don't stop now I will still be going at Christmas!

Wishing you all a really wonderful Thanksgiving!

love and light.
Annie

All's well....

Firstly - Congratulations to Adrian for winning the weblogs award of the year! This is wonderful news and a really big thank you to everyone I know that voted.. :-)

So yesterday we tootled off to the Doctor for Steven's regular checkup as well as to sort out some of the issues we had. I won't go into details, but Dr J got our point, there will no longer be two pcr tests done at the same time and we are not actively looking for another doctor :-) We sadly agreed that doctors (generally speaking) do not care about their patients, just the money. It's sad to see this and its difficult to have my child in the care of someone that I believe feels this way too. He is just a number there, someone to see every few months who occasionally arrives with a mother that is not too happy about something.

I really enjoy going to these appointments with Steven, not so much to be in on the appointment, but I love the time we get to chat on the way to and from the office. Steven chats away about all sorts of stuff. Yesterday on the way to the doctor, I had to tell him that his results were still good, going in the right direction but not pcru. Evidently I put it across to him in a way that he felt ok. At first his face got tight and he was frowning, but after a few sideways glances from him, and me burbling on, he relaxed and seemed to ok take it just fine. I really am not worried about his results at all and am really glad he picked up on that.

He will have to take charge a bit more and remind them when he goes in for his OHSU pcr's that they must not send to the local lab as well. This is good too because it gets him more involved in his care and decisions. When all this hit us, the diagnosis and the terror, I took the organising, sorting and deciphering on me. I wanted to save him from having to deal with all this - he had just moved out, just started his life in the real world and I did not want him to have this too. Now, in retrospect, maybe I should not have done this. I don't know. Somedays I think it's right - some days not. But I am slowly handing parts to him to deal with. I do love that he forgets doctors appointments, does not sit and worry too much about this and says things like his little silver z-car is his future midlife crisis vehicle, so he is keeping it! I love when he does not let cml interfere in what he does, how hard he works. I love that he has plans in his mind for 40 years from now.

All day yesterday there was a radio telethon raising funds to send kids with cancer to camp and also to help find a cure. This, of course, was on the radio when I was driving to and from meeting with Steven. Listening to some of their stories made me so grateful about everything. Yes, everything. The announcer has not got a child with cancer and he kept saying how he could not imagine dealing with having a child with cancer, that it must be so difficult, so painful as a parent to watch your child go through this. Geez, he even had me feeling sorry for myself! Until the next story aired - a couple with twins, 3 years old, both with AML. My self pity shrivelled up super quickly!

But yes, at times it is hard, and its harder when I do have bouts of self pity and "if only" etc and then I feel selfish for feeling like that. So I try not to feel selfish, then anger steps in and the selfish feeling follows that again. And so we go around inside my head for a spin. Fortunately those feelings dont last too long any more, but when they are around, they are real. The hardest part is realising that there are so few people that I can talk to about this without sounding like a full on pity party...... and even then, just verbalising or writing it sounds silly.

Yesterday, just listening to that radio show nearly got me weeping openly because of those stories I heard, because I was so grateful, because this was and is not a family I want to belong to and because it's definately not a family I want my kid to belong to. Why did I not turn that radio off? Why did I keep listening and teetering on that edge? Because that's just how life works at times now. It was both good and bad for me - but mostly good to hear through each story how very fortunate I am.

We now have a break until around mid January - NEXT YEAR! before having to deal with another test..... awesome!

Love and light and a good few smiles today
Annie

Laura took this photograph last year in Oregon - I love it - Steven navigating through life's puddles.......ok - so I am soppy! :-)

Not pcru :-(

Steven's proper set of results came in - the ones from OHSU. The other wonderful results were not, after all, wonderful. The doctor got it wrong - the wrong type of test was done, sent to the wrong lab. Or rather - they sent away for a second pcr to a local lab without us knowing.

So his proper results are just only a tiny, teeny bit better than the previous time. Last reading was 0.10%, this reading 0.095%. Its still in the right direction, but just not the pcru we were told by the stand-in doc. I am going to have a hissy fit tomorrow at the doc's office. The worst is that I have to tell Steven before then that the results were not right. The kid was SO happy about being negative for once.

Such is life

I need to paint a rocking chair picture - worry is like a rocking chair - takes you nowhere.

I am not really upset at the results - of course we would have liked them to be better than what they are, but the trend is still downward and Steven feels good. But the fact that it seems as if I need to stand behind these doctors all the time seems to be totally rediculous. When Dr H called to tell me that Steven was PCRU, I asked him to check, to give me the numbers, the percentage and checked again that it was a quantitative test done, not the qualitative. Doc assured me that it was the correct test and that Steven was pcru.

Not for a minute did I think that it was a test from anywhere other than OHSU. There was no reason to think that. I know that the blood was sent off to OHSU - Steven did it himself. So I assumed (there is that word again!) that I could just take what the doctor was saying as being correct. ASS (out of) U (and) ME = Assume.

Now I need to 'un-tell' Steven before we get to the doc appointment tomorrow. I think some sparks will fly in that meeting. Steven really needs a doctor that he can rely on to at least give us accurate test results!

But, as I said to a friend of mine, the sun is still shining in this neck of the woods.

love and light
Annie

Vote for Baldy's Blog!

Hey there everyone

I follow the story of Adrian (http://baldyblog.freshblogs.co.uk/) and his bone marrow transplant because of AML and CML - yes, the only person in the world known to have both these leukemias. He is in the UK. And his mom is wonderful too!

He has done an incredible job of video blogging his transplant and sharing with so many others the the real aspect of going through all this. He did not do this for any personal gain and has helped so many others with his honesty and ability to put into plain english what otherwise sounds like greek. He has also brought out into the open what a bone marrow transplant really entails. Really some wonderful watching and reading.

Now, wonderfully, Baldy's Blog is a finalist in an international competition - the results will be announced in Las Vegas at the end of next week. And he can do with some votes. So far he is ahead of anyone else, but com'on, lets help him get this award! I have looked at the other blogs in the medical category, and have to say that his is the most touching, personal and real. He will gain nothing by winning this award, he wont even be able to come to the USA to get it. There is no monetary value to it at all. Just an incredible feather in his cap.

Will you all please go to the site http://baldyblog.freshblogs.co.uk/, click on the big graphic there to vote, look for the Best Medical/Health Issues Blog it's under the second heading - and vote for Baldy's Blog. Read his blog, if you have the time....... its quite a ride!

Thanks everyone..... this young man really and totally deserves this..... check out that picture of his smile while you are on his blog....... :-) And vote EVERY DAY!!! not just once :-)

love and light
Annie

YEEEEEEEEEHAAAAAAAA! PCRU!

I could not stand it. WHY is there always a weekend when waiting for results? The weekends feel like wasted time when there is no chance of getting the results and everything just goes on hold. Maybe one day I will treasure those times........ I hope so!

ANYWAY - I called the oncologist today to see if, perhaps, per chance, maybe the results had come in already and they had! The doctor that called me back was a stand-in for Dr J and he said that everything was negative. Of course that was not good enough for me, I want the numbers! So he said he would call back, which he did. I think the only thing I remember about the second conversation is that he said the words 'molecular remission'. And everything turned blurry and the papers on my desk picked up the tears that fell. He said that there was no sign of leukemia cells - that the right test had been done and that this was awesome news! What a feeling!

I could immediately think of 100 people I wanted to tell! Steven first, of course. Boy did he sound thrilled! :-) Then I just sat. What a feeling. Molecular Remission - those words deserve upper case. Every time.

I asked the doctor to fax the results to me so that I could hold them in my hands, which he did, and that's when I discovered that these results were not from the normal lab we send the blood to. This test was done at a Maryland, TN lab, not the OHSU lab. Oh dear. So I called back and discovered that the doctors office had also sent off blood to the local lab for a pcr. I am not quite sure why as they know we send it to OHSU in Oregon, have done for the last 5 tests now. So two pcr tests were done this time. Will the insurance cover it? Who knows, does it even matter right now?? Nah :-)

The best is to have the tests done at the same lab, so I am really keen to see what the OHSU lab comes back with - that should be next week. But this is wonderful news.......... PCRU at a local lab is soooo good. PCRU at OHSU will be Awesome. The trend is right. Down, down, down.

Tonight I celebrate those letters with an enormous smile that nothing can wipe clear.

WOW

Love and light
Annie

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
Annie

Penny

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

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
Annie

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

Annie

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

Annie

Xxxxxxxx

Prettier days.........

Thank goodness that a day is only a day long! :-) I woke up today much better and think a good nights sleep had a lot to do with that.... I actually felt creative today so started playing with some of my photographs and a program I have. I love what I have been able to do - it makes me smile, remember the beauty all around us

A good day. :-)

Love and Light

Annie

Angry days.

Today I am angry
Today I am angry that my kid has cancer
Today I am angry that cml is on my mind every day, every hour.
Today I am angry that my kid has to deal with this
Today I am angry that I have to deal with this
Today I am angry at cancer.

Nothing has changed, Steven looks good, sounds good and is getting on with life. What the heck is the matter with me?? I feel selfish for being angry about him having cancer - it's him that has it but I am so deeply affected by it. I am thankful that these days don't happen that often anymore, but today is one of those that I am really simply ticked off at the whole friggin situation!! Royally ticked off.

It's not that I sit here all depressed, its not that I look for a dog to kick, not even that I shed a tear - its just that feeling, deep down inside, that 'thing' that causes my insides to literally wobble and shake - and no -thats not the tire on my hips either - not this time. It's that constant string of thought that runs through my day. Sometimes I wake up like this, other times it arrives later and then I realise that it was there all the time anyway. I keep thinking of that movie "A River Runs Through It" - well, today my river was in full flood, thoroughly dampening the core of my day.

I don't like it.

And yes, I do realise that I am one of the lucky ones, that Steven is doing well and all that - that is the Sensible part of my brain. It went on vacation.

Talking of vacation - we are packing up to go on the road for about a month. The rv is almost fully packed and we are leaving on Saturday. Steven's birthday is on the 17th. And the conversation runs through my mind: can we go? Can I miss his birthday? Is it fair under the circumstances? Am I going to regret it later? Did I say conversation?? Ok - so I know that by going should/will/could tell him that I am totally confident that I think he is ok. Well, I AM, its just ............ you mom's out there! you know what I mean!

Ok - today is almost over. I am going to read the rest of the night away and tomorrow will be better. It's crazy that even when everything is going well, this hits me like it did today.

Love and light
and thanks
Annie
Xxxxx

Are things what they seem?

I find that I have a new fascination for seeing things up close and have been taking many really up close photographs - this in not one of them, but this is an example of my attempt to change things. Well, I cannot change the cml, but I can change other stuff :-)/ It seems that since Steven was diagnosed, I really do see things in a different way - I see that things that appear to be one thing, can quiet easily be another with just a few clicks of a mouse. That there are many different ways of seeing life, whether its an opinion or an item of a flower.

So this is one of my photos that I digitally altered. Does it make it a different flower? Has it changed what it is? Just because it is now almost unrecognisable from the original picture does not make it any different at all......

So that brings me to the question - what is really real? What is really the way I see it? Maybe its all just a matter of perspective at any given time or circumstance. I know that my perspective on what is important in life is very different now from what it was 20 years ago. Very different. Thankfully! LOL

Ok, ok - I am rambling and its time to call today a day.

Love and light
Annie
Ps. Shane, Lisa, Diane - I am sending you all very positive vibes, all the time! Hang in there.......XXXxxx

Of warmth and guilt.... and THANKS!

These two weeks have been very interesting. I am following a few different people through their cml experiences. Some going through transplant right now, others doing well and some waiting for a match so that they can go to transplant. I am totally fascinated by everything these people are going through and how amazingly they deal with it all.

I know that we deal with what we are going through, mostly, thats the way of life. But I have to say that I am really impressed with the strength of the younger generation dealing with this. There you have Erin with new baby - living her life to the fullest and able to worry about 'new baby' issues - real life things and not only cml. Then Lea, the positive vibe she exudes is amazing as she waits to hear about possible donors. That waiting must be very stressful, yet she keeps her sense of humor very much alive. Shane, who has just received his new cells and feeling really grotty - the strength of his family is wonderful. The poor man is not feeling very well right this very day, but his family is - and they are also dealing with all this in an amazingly positive way. And the others too..... there are so many wonderful stories out there....

Seeing all these people dealing with situations that are so different and at times, so much more difficult than Steven's situation has truely humbled me. I have met the most amazing people online, people who give me strength and hope and love and light just by sharing their stories, hopes and fears and best of all - the victories, the good blood results. I really love talking to the other mom's out there because we are on the same wavelength.... and I also love reading about how the people in Steven's age group are getting on with their lives. And then everyone else too - you all just fill my life in an incredibly positive way!

Tonight was the Light the Night walk here is Chattanooga. This has sat on my mind for many months already. This sounds, and is, really selfish and spoiled and ungrateful, but I literally did not have the energy to do a bigger scale fundraising this year. Steven was at work late this evening so we did not even go and join the walk. I called him earlier today, just to make sure that he was not going to be able to make the walk - he just wanted life to move on. I told him that I would love to walk with him, but if not this year, maybe next. And I do feel a little guilty about letting a night like this pass by with no effort on my part to participate or to help in a big way. Next year, I promise myself. I really want to walk The Walk, but I want my son at my side and I want him to be there because he really wants to be there....

We have a donation bottle in the shop and collect money there, most of our smaller repair jobs are paid for by a donation instead of a bill. I sell prints of my photos and paintings and collect in that way too - an ongoing effort as small as it is. I read with awe the amounts some of the teams have collected and the great effort they have gone to - and it honestly puts me to shame. And it makes me very grateful. Next year, I promise myself, I will be part of a team again, I will make a difference again on that front. I will contribute and Pay Forward again. I will......... I will. I am not allowed to leave the survival of this child of mine up to others without at least making an honest, concerted effort for him and to repay those that have done this over the past years.

So to all those that raised any amount for the Leukemia Society - a really BIG Thank You! I love you all for your efforts and dedication and for bringing the cure closer.

nothing now :-)

Many times words come to my mind - sometimes they are worried words, sometimes they are contented words with that feeling, and sometimes I think of something deep and profound, but then I am not near the computer and it does not feel or sound the same later that day or the next so thats why I have not written for a while. And also because everything seems to be going along just fine.

Steven is tired, but thats because he is 'playing hard' and has had a rough week this past one, work and college wise. They stopped by here yesterday to pick up their doglet that we babysat for them for the weekend - they both look good, and the doglets are exhausted, as are we! LOL. Here is a photo of them taking a short break... Look how exhausted little Allie is!

I found a few new blogs, some written from the people who are going through bone marrow transplants and one written by a mom too. I literally devour these blogs, finding now that I can read them, cry the tears and laugh as their stories take the twists and turns through heartache, pain and joy.... but I am able to let them go too. I mean that I am able to keep it in perspective and not let other sad stories drag me down - but I do keep going back to check.... I want to find good in this cancer journey - I have to!

So now we have another week and another cbc coming up - but I just know its going to be ok. No other option is acceptable.

Love and light

Annie

Mama scans.........

Mama scans are those things we do as mothers to our kids as they come through the door.. I think this is a normal thing to do, but its definately accentuated when a child is going through a bad time or if they have a disease as Steven has. A friend of mine wondered if we actually buzz while doing our scans, and I have to say yes, I am sure we do. Do the kids know? Yes, I think they do, but they know its because we care. And as the time goes on and things get more stable, that scan look in our eyes can become hidden behind a smile, even in the eyes.

This past week, on his way home after work Steven stopped by to say hello. He lives literally a quarter mile away and has to drive past our house to go home. He had passed by and then turned around to come in here. After chatting for a few minutes, he casually mentioned that he was starting to feel lousy, sore throat, stuffy head and such stuff. Oh boy - talk about antennae shooting straight up and even vibrating on the way up!! LOL. But........... cucumber cool on the outside. I asked him if he had taken anything, not even reaching for his forehead to test for a temperature. Good hey? He said that Laura knew what meds he cannot take and that he was going to take something and was sure he would get over it. I agreed with him and said that I hoped he got to feeling better soon. And so the conversation moved on to other things. He did not stay long at all this time, which is good too because I would rather have him stop by for short periods regularly than have long periods between seeing him.

I wondered afterwards if that was his way to check to see if he needed to worry. Last time he felt like this was when he was diagnosed with leukemia at the beginning of last year. I am so thankful that I have learned enough to keep my cool and treat this as a simply bout of mild flu even though at some level it was natural to be concerned, obviously. So thankful. It gave my kid assurance that its ok, that he need not worry and that maybe, after all, a cold is still just a cold - flu is still just flu. I know that he watches my 'freak level' to see what he needs to worry about - well, not on everything regarding the cml but I am sure that I am the 'second opinion' in many instances. I am glad that I gave him what he needed for this. :-)

So, of course, on Saturday - the next day - I call to find out how he is feeling. He's doing fine. So how do I ask him again on Sunday without sounding as if I am checking on him too much.......... It's not normal for me to speak to him every day and did not want to give him cause to doubt my calm reaction on Friday. So when we went shopping we bought an extra container of strawberries for them and that way I could hear how he was doing and even get to see him when he stopped by to pick them up. He sounded great, looked great and was back to being bouncy too.

What was really lovely was that when he first told me about feeling sick and my antennae shot up like that, the first full signal they picked up was not 'full worry mode' at all. The first signal was 'be sensible'. And I could pass this on to Steven. I find that more and more, he wants to talk less and less about this cancer. And that is the way it should be. He was feeling lousy, he came and told me - thats more than I could ever ask for. That trust, that belief in my honesty, thats so precious.

We have the local Light the Night walk coming up this week and Steven has said that he has lots of work to catch up on as he goes to school 3 nights a week and needs to put in some overtime, so he wont be walking. I wish I could walk with him, but while we walk, he will be getting on with his life - and I prefer it to be this way because its what he needs.

And I guess my mama scan will always be stronger on this one of my three children. Even after the cure for cml is found.

Love and light
Annie

Pictures........

Steven and Laura................ and Lottie and Steven

Lovely, lovely people

:-)

love and light

Annie

To another mom of cml-er

I recently wrote this letter to a lady who is mom of a cml-er going through a transplant and on re reading it, I thought I would share it here s it puts really clearly many of my feelings, past and present. Much of it is a repeat of what I have said recently and long ago..... but here it is anyway.... minus some of the more personal writings.....

Dear ***

I am SO glad you wrote to me - hearing all you said actually helps me understand some of the feelings I have lurking just below the surface and brings a good measure of reassurance that I am, after all, normal in my feelings - so THANKS :-).

And yes, let me first say how I think that Adrian is very brave to do a blog like that - really open. It cannot be easy to go through everything he is going through, but to put it out there in such a wonderfully honest way. I have already passed his blog to a lady heading towards a transplant and she said it helped her tremendously!

It constantly astounds me just how these not-so-kids are not only dealing with this mean disease, but actually helping others along the way. Don't you just get totally ticked off that it seems to have hit the good ones? You know, I think your road has been tougher than mine, and no - this is no competition, but rather a very difficult road with different stages. I have been so fortunate that Steven has reacted so well to the Gleevec so far, apart from the more recent wobbles. He has been looking great, no hospital stays, no chemo or anything like that. He has missed very few days at work and that was because we hauled him off to Oregon to meet up with Dr Druker last year, and also a specialist in Nashville right in the beginning. So........ his life is almost normal - so little outward disruption. My kid still looks like my kid, paler, more tired, definately older and wiser, and actually better than before diagnosis.

So I have not had to deal with the heartwrenching changes you are seeing in Adrian. In writing this, its almost terrifying - this cancer in him with relatively no outward signs. Scary stuff, whichever way we look at it, hey?

Yes, I find it difficult to enjoy occasions as I did before, but I have to say that it has become easier over time. I say this with the little voice in my mind telling me that as long as he does well............ you know :-) I find myself thinking about the carefree occasions we had bc (before cancer) and find myself counting the events ac (after cancer), and I treasure every little thing, every email from Steven even more than before, and then I remember Davo's words and try so hard to see my son as my son first and then the rest. Have to admit that I fail miserably some of the time :-) Did you read Davo's poem on my blog? That poem helped me SO much - and when I started to seriously think about it and conciously made an effort to ignore the disease when Steven came to visit - the difference was quite astounding. I don't mean ignore totally, because that is simply not possible, but trying to train my brain to see him as the person first and foremost. Not putting the cancer as the primary definer of my child.

Steven started relaxing after seeing me more relaxed, and we even have visits now that cml does not even find its way out of my mouth or to the front of my mind. Until he leaves, then I can analyze what he looked like! I do a mother scan, now mostly unconciously and under his radar - and push it to the back of my mind until I can look at it without him seeing. It has done us good. We had dinner with him and Laura the other night and on the walk home my analysis kicked in - "looks good, pale, a tad tired, no flushed cheeks, took his meds with supper, still got that wonderful sense of humor, talks easily about test results, still has the sparkle in his eye that grows when he looks at Laura. All is good." And I sigh. And I know I will sleep better tonight again.

Yes, you describe it so well, a big gash in our lives. No one else, other than a mom 'gets it' exactly as we do when it comes to our kids, no matter how they try and want to. Someone who is a tremendous support, very caring and with whom I get on very well said to me a while ago that I was over reacting, especially as Steven was doing ok. She said I should let it go, relax and not worry so much, that I should not take it on as mine, not worry and not make my life so wrapped around it, that it was his disease, not mine and, after all, it was all going to be ok, right? Well, at first I was tremendously hurt and angry, then got it that she simply did not "get it". There is no way she can understand, its not a lacking in her, its just not possible. So although family and friends dearly want to help, to understand and be there - they just cannot be there at the same depth as another mom.

When Steven was first diagnosed the most difficult thing, apart from the obvious, was to be near him. I had to cry, rant and rave and could not do it near him. He had just moved out only three weeks before and I was seeing him almost every day, especially after diagnosis. We both cried and held each other up but I wanted to fix it and was devastated that I could not - was horrified that this young man would have this to worry about right at the beginning of his life. It was awful. And no one could sense the depth of my despair. I needed so much time to freak and cry and bawl and am so grateful that he was not here to see that, but also needed to be near him every second. I knew that if he has still lived at home, I would have smothered him.

So Frank picked up that slack - soaking up many many nights of tears and angers. I had to laugh at your soldiering on comment - I am afraid that I failed as a soldier! LOL. I cried so much I nearly drowned! And yes, sometimes being the grown up simply sucks....

I was really really fortunate to meet a lady, Debs, on a support group who has a daughter of similar age with cml. We clicked online and we met her in Alaska in 2006 and then in Seattle again on the same trip. I just flew out there in July this year again to spend some time with her. She literally kept me sane - her and the Asia support group. Do you know about them? They are an absolutely awsome group of people from all around the world - all either with cml or caregivers, mothers and fathers, daughters and sons of those with cml. What a wealth of information and support, help and laughter. There are a good few members from UK and a goodly number of parents with 'kids' with cml. Here is the link, in case you want to visit or join there.. http://asia.groups.yahoo.com/group/AsianCMLSupportGroup/messages .

Steven has a pcr test done every three months and I can feel the pressure and tension building when the time gets closer. I check and recheck the dates, I make sure I have the paper close by to call and order the test kit, then I count down the days so that I dont mess up... then the test, then the 3 week wait for the results. Each three week period brings on 3000 more gray hairs, my blood pressure goes up and the wrinkles arrive in droves! These are the true wrinkles, not 'character lines'. LOL. It's not ok - he is doing great, but this monster can change on him at any time. And I don't want that. Not for him, not for me, not for anyone. So I become restless, irritable, withdrawn and then the results come in and I either cry with relief or breath deeply, sigh and know that life for the next 6 weeks will be better - until the time comes to re-order the test kit. Around and around the mulberry bush, the mulberry bush........... etc etc. Did you know that song?

I know that as Steven levelled out, responded, looked better and dealt with everything so well - I got better. Occasions became easier, I started sleeping through the nights, my heart beat more evenly and life got its smile back again. I really, really wish this for you in the near future. Obviously for all of you - but, as mom, especially for you because that will mean that everything is truely ok again.

I sometimes feel guilty when talking about my feelings, and spending so much time on how I feel, and I definately don't intend to exclude anyone or any of your family and friends in my good wishes and hopes, but I only clearly feel my feelings and can imagine how you feel, not any of the others and definately no one with cml.

---------------------------------------------

Go to http://baldyblog.freshblogs.co.uk/ to see the video blog of this young man and read his story - it's incredibly open, honest, heartrending and full of life.

Love and Light
Annie

Our Momly Job.......

I spent a few days feeling bruised from the wait, but now the days definately feel and look lighter and brighter - despite this awful heat we have going on around here. It seems to be never-ending - and I do know that it wont be long before I am moaning and groaning about the cold winter we are no doubt headed into...... :-) Such is life and may the heat and cold be our main worry!

As a child I had a little light weight wooden bat that was attached to a little ball by a thin elastic band and I would 'play tennis' with this, sometimes hitting the ball but many times missing it, causing that ball to fly way beyond the hitting (normal) point of return over my shoulder somewhere. Sometimes life feels like being this little ball - totally at the mercy of something bigger holding that bat, and at times totally out of control, like an insane little bouncing ball.

But for now I am just so enjoying the peace. Since I read Davo's poem about seeing the person first and only later the disease, I get great pleasure in realising, after a visit from Steven, that cml did not make an appearance in the front part of my brain at all! Twice in this past week, he has popped in for just a minute and only after he left did I think that - geez, he looked so good! and how wonderful it is to see my son for the person he is and not the disease he has. I know that I will probably not be able to maintain this always and that right now is 'the honeymoon' period again - right after a good pcr result. But boy, am I enjoying it! I know Frank is too - having a much more relaxed Annie around the house for a change.

As another cml-er mom said to me - "to worry is our momly job" - and yup - we do it well! :-) But for now that worry has receded to the rear part of my brain, giving us all time to build our strength for the next waiting time.

I wanted to say how much the comments on and re this blog mean to me. I have 'met' a good few mothers, cml-ers and others through this blog, who help me through the maze of feelings and emotions and life with cml in it, by either sharing their stories, holding my hand, encouraging me and/or simply letting me know that I am not alone. I would not be where I am on my 'peace scale' without all of you........... so a really big Thank You!

Love and Light
Annie

For Adams mom........

Today a friend of mine called from California - her nephew Adam passed away from cancer - AML. This incredible young man was 25 years old - he was too young to die! I did not know him at all - just what Lisa has told me, but I found myself dripping tears onto the kitchen counter as she told me. She had told me of camping trips, his way with kids, his smile and his talent. A wonderful, special, nice kid. And now he is gone. Way too soon.

Steven is 24. I don't like to hear this happening to people this age group. I don't like this happening to anyone at all - but this age? Its cruel. Lisa told me of his last days here, the anguish of his mom, his family and his pain and suffering. We are all told of how they are in a better place, how they are not suffering anymore etc etc. That's one thing, the anguish, pain and unfairness of it all still has to be dealt with by those left behind. A new life - never as complete as before.

To Adam's mom - when I see my son, I will remember Adam too. I will remember Adam as Lisa described him - laughing, deep, caring, smiling, artistic and a very special person. I am so sorry for your loss.

love and light
Annie

Breathing again!

Ok - so we just got the results in......... Steven is headed in the right direction again. His PCR readings just a tad lower than the last test, but lower nevertheless. Here they are:

4th June Mid July
PCR = 0.17 PCR = 0.10
Log Reduction: 1.4 Log reduction: 1.6
The log reduction is a log drop from the baseline at OHSU and the higher the number, the better. We are still hopeful that he will get the the cherished 3-log reduction in the not too distant future.

My reaction to the results was quite scary. I had not realised just how tense and scared I was waiting for this result to come back. The wait went on forever because it was in essence a double dooby wait - from June - then the shock of the rise of pcr and the wait till we could redo the pcr and then this wait that simply went on beyond sanity for me this time.

So now, months and months of tension have drained out of me and even though I hear the next test knocking at the door - not today. Today I am going to smile and enjoy these results to the fullest! I literally feel as if the world has lifted off my shoulders.

Today is good - no matter what. Today is good.
love and light
Annie

Rocks and jello......

I check the calendar almost daily - how many weeks has it been since Steven's blood was drawn for this PCR?
25 weeks??
Feels like it.
Its only been 2 weeks.
Only.

One side of my brain says its simply got to be ok, the reading is going to be lower, the results will be in the right direction. It will. The other side says.............. nope - I am not even going to verbalize it. Those words and feelings bounce around my head and they can stay there. For now. I find it quite amazing just how much my thoughts and emotions bounce around during this wait - almost extreme to extreme. It really messes with my peace of mind and general ability to get through the days. Everything is smooth on the surface but not quite like that underneath - kinda like rocks and jello.

I know that whatever happens we will all have to deal with it - it going to be ok in the long run, but I SO don't want things to change for Steven! And selfishly, so selfishly, I don't want the worry, I don't want the changes for all of us. How selfish is that?? .......aaaaaaah. What will be will be.

So I finished Harry Potter and could NOT believe that "he who cannot be named" actually ..............nope - not going to write that either. It was good - go read it :-)

This PCR is kinda important and the wait this time is terribly long. Terribly long. My cell phone is glued to my side for when Dr J is going to call me. Occasionally I check that its still working. It is.

One day closer
love and light
Annie

Uuuuurrrrrggggghhhhh

This wait..............!

No news yet..

The wait goes on
Steven looks great and his attitude and sense of humor are wonderfully intact.
So all is good :-)
Love and light
Annie
XXxxxxxxx

The wait - again

Yes I am wobbling again. Yes this is scary - no matter that it is not urgent, that there are other meds to take care of the situation if Steven is losing response to Gleevec. His counts should be going down, not up. This is not how its supposed to work, dammit! I find myself becoming frilly - short of temper and patience and cml is taking a firm hold on the main part of my days. The three week wait has started again after Steven had his blood drawn again for the early PCR on Monday.

There are still times when I get angry, well not angry, but......... yes angry at this all. Sometimes it's a selfish feeling, one that revolves totally around my life and what worries I don't want in my life - but it always comes back to that young man with the incredible attitude. Always. And then I get angry some more. Why him. Why not him ....... and around and around I go.

So Frank bought me the latest Harry Potter book for me to dissappear into... I used to read only non-fiction stuff, but now I find that reading the "impossible and the untrue" empties my mind and I sleep much better. The debates and conversations dont happen in my mind when I read non-serious stuff.............

Sometimes I wish I was inside Steven's head so that I would KNOW how he is dealing with this. Above all, I don't want him to be scared, but I know that that's not something I can control and its a totally normal thing to worry. I know that the not nice things I have had to deal with in my life have made me stronger - but geez, none of them were as deep as cancer! Hopefully this will make this son of mine stronger too and one day he will look back on this time and breathe easy.

So the wait has started again. May it be easy on Steven and Laura and may the result be in the direction that we so desperately want it to be.

Love and light
Annie

What a ride! :-)

These past two weeks have gone so fast - it almost seems like a dream already. I boarded that first airplane with a definately elevated heartbeat and sweaty palms and then when I sat down, discovering that I only had half a window, I thought that if Steven can handle this cml I can handle a simple seven flights! And I did. Apart from the take offs and landings I loved the flying, taking many, many, I mean - many! photographs, many with the airplane wing in it. The clouds were awesome, the views of the snow tipped mountains, the rivers and fields below - there was just so much to see! I even saw another airplane flying far below us in the opposite direction. The landing in Denver was bumpy - very bumpy, coming into Seattle was so beautiful with the volcanoes dotting the horizon and Puget Sound glimmering in the sunshine, flying over the Rockies into Alberta was simply stunning and the bestest (yup, an Annie-word) was coming into Chattanooga again. The sunset from up there was simply so beautiful that it brought tears to my eyes and then a few minutes later the lights of Chattanooga sparkled in the dark like gems winding around the river. Absolutely wonderful in so many ways.

I came into Denver at full speed and never stopped! LOL Gloria treated me to The Taffetas (60's musical) - and yes I sang along with a good 80% of the songs :-), The Titanic show was awesome, downtown Denver - fascinating, a proper High Tea, a pedicure - my first! That was truely awesome :-). We saved all her data on her computer, reformatted it, reloaded and made sure it was working again, all inbetween shopping, visits and many laughs and chats........ I think I can count the number of hours I slept on that weekend on one hand! And it was wonderful - simply wonderful. I was exhausted when I left Denver, but knew I would miss Gloria - and I do. She is a lovely lady with a twinkle in her eye - unless its 3am! LOL

Debs and I had met already and it was with a sense of peace that I saw her at the airport pickup place. She whisked me off for lunch at a beautiful resturant right on the banks of Puget Sound, where Seattle in all its glory lurked on the opposite banks while on our side things were quiet and gentle, with little rowing boats waiting to be taken out and a sailboat rocked gently across our view.

We motor-mouthed our way through the next few days - lunch at the Space Needle (the view was simply awesome!) the Pike Street Market, a walk through a stunning state park, a lovely drive to and from Bellingham, lunch with her two beautiful daughters - Laura looks so great and has and incredibly positive attitude not only towards cml, but towards life in general and the girls are so close and full of smiles and fun. We went on a short ferry ride too which was so refreshing too - I always breathe deeper when on the water. And we even had time to sit and share some photos as well.

It was so good to be back with another person that 'gets it' totally. This cml thing is such a big part of my life, but only another mom with a child having cml can really understand how deeply my joy and fears are so tied together, only another mom can fully understand all aspects of dealing with this on all the levels that we do as moms. I definately dont mean to put down others caregiving people with cancers, or other parents - but a mom does feel it differently. I am so incredibly fortunate and blessed to have found Debs, clicked with her and then being able to get together with her again now. She has been one of those people that have been instrumental in me keeping sane this past year and a bit.

And then I headed up into Calgary, Canada to Trish - Penny's sister. After rushing around seeing so many beautiful and awesome sights it was wonderful to be able to be quiet, relax and just get to know Trish and her 'other half'. Her sister brought photos from their trip to Egypt which enthralled me and got me interested in checking out many things on the web. And just when I thought I was going to really get some rest, Trish and Stu took me to the simply most awesome waterfall! A gentle river flowed over some lovely rounded rocks and then headed down in a beautiful waterfall - it all looked so peaceful until we headed down the very narrow, steep and winding, slippery path to the bottom of the falls........ I walked behind, watching Trish head down with her heart in her throat and could not help laughing at her. The 'hike' was well worth it when that cool breeze and fine spray hit us as we walked really close up to the falling water.....yes, we did have to head up that path again. Interesting, so say the least.....:-)

Then on to another beautiful waterfall - 133 steps to the viewing point. Yes, I did count them on the way back up and I had to count slowly to make sure I got it right - that was my excuse for going slowly up those steps and i am sticking to it! Of course I took many many photos and I had to laugh when I realised that my clicking finger was being matched by Trish all the way! LOL.

All in all this trip was a simply wonderful, exhausting, exciting and amazing 10 days with some really awesome people that are all so filled with love and understanding, fun and life. A really big thanks and heartfelt hug to you all! And its wonderful to be home again too. I faced a good many of my fears on this trip and through it all, Steven and all others dealing with cml and other cancers helped put my little wobbles into perspective. If you guys can deal with cancer - I can deal with my measely little (now gone) fears. Thanks!

Steven, you are still my hero!

Love and light
Annie

TIme to fly

Tomorrow midday I fly out of here to meet up with Gloria, Debs and Trish...... wow - the time certainly arrived with a bump. Yes, I am packed up almost ready to go, well - as far as the act of leaving is. I dont like flying. At all. And whenever we go away, I have to prepare in case something goes wrong and I don't make it back. So there are letters that I write, and re-write, then there are the instructions I leave and it goes on and on and I just have to stop, relax and know what will be - will be. I know I go overboard and yes, I even drive myself nuts doing this. :-)

As soon as I get back it will be time for Steven's re-test of the PCR and I have been very fortunate in the timing of this test..... mind you - nothing I do can change the outcome, but I could not be away when the new results come in... So all is good.

All three my 'chickens' either called or came around to say goodbye - such a good feeling. Its going to be strange to be away without Frank and I know that the time is simply going to fly by and I will have a blast.

So, until I get back
Love and light
Annie
:-)

Lottie's visit

What a wonderful visit this was! Lottie and Jimmy arrived on Monday early afternoon and we quickly twisted their arms to stay the night in the rv. Steven and Laura arrived after work and we all headed off for a meal at Applebees and some ice cream at home afterwards. Lottie picked up Steven's cbc that he had done that day and her comments about Steven's normal readings brought a smile to his face.

We had a lovely, laughing evening and I think Steven was given a lot of hope after seeing Lottie so full of life, laughter and mischief after 11 years of fighting cml and not ever getting even close to his response to any drug - so far! He could see that life does go on and I know he has heard that before from me, from friends and doctors, but here was a person really doing it and doing it very well indeed!

Lottie and Jimmy are wonderful, caring people with a beautiful sense of humor and a zest for life that is simply great!

Calmer waters.

Yes, I was worried, angry, scared and all that - but not for too long and only when I ignored the stuff that I actually knew and that which made logic sense and before we heard back from Dr Druker and before I read all the wonderful responses to my slight panic attack and before I was able to sleep on it and....... its quite amazing what a pressure release it is to let loose a few tears when they arrive. Not too many this time, but it really is like washing some of the scared away.

I typed my questions and 'scareds' on the Asia board and a more 'together' email to Dr Druker for his opinion. I was very happy when Steven's local oncologist, Dr J, asked me to get Dr Druker's opinion too. Anyway, Dr Druker worked his magic and answered that same night saying that the jump upwards was not that much at all and that Steven should have another PCR in 6 weeks after this one, which takes us to mid July and then he will give an opinion on where to go from there.

If the PCR then is higher still, then we will probably have mutation testing done, but nothing is urgent right now. So we will have those PCR results by the end of July. In the meantime Steven will go on with the 400mg Gleevec and will get another cbc done next week.

I had kinda, sorta put cml on the back burner, hoping that if I just believed that all would go smoothly, that it would. I kept up with reading the support boards but did not respond or post much at all. So when this rise in the pcr's came back and I posted on the Asia board, I was very touched by all the responses - private and on the board.. Its an incredible feeling to know that so many people really care and are out there ready to hold a wobbly hand. Totally priceless.

So now we will go on again as normal, wait for the cbc next week, then on Friday next week - off I go to see Gloria, Debs and Trish and when I get back again, the next pcr gets done. And then that three week wait starts. Maybe I will be good with that wait. Ya think? LOL

Big thanks to everyone who is walking this road with us - your love, support and encouragement really means so much to us all. I print out the responses for Steven and Laura and that helps them see that everything is, afterall, still on track. So far, this was just a little wobble - is that called a wibble?

Love and light and a gentle smile tonight
Annie

ps - hugs for Adam

An upward trend.........

A trend is what we look for in pcr results. Either up or down. It's up for Steven...... the trend is in the opposite direction to where I have been sending all my hopes, prayers and vibes. Here they are:

March '06: 0.13646%
June '06: 0.02868
Oct '06: Negative (qualitative)
Jan '07: 0.019%
March '07: 0.076%
June '07: 0.170% (back to square one and more)

So now we wait to see what Dr Druker's suggestion is, higher dose of Gleevec, changed meds, another bone marrow biopsy, mutation testings............. This is not a road I wanted Steven to be on at all.

This is not a road I want to walk, run or ride. Tonight I am angry. I am angry that a really good young man, with an attitude to life that I wish many more people would have, and a very positive attitude to this cancer, is having to deal with this.

Yes, I know there are meds out there that will do him better than Gleevec, that more and more reasons to be positive are out there, that............yada yada yada. Thats the logical side. Its the illogical side that's kicked in tonight. The anger. The disappointment and the bouncing marbles that turned to mush when I heard the results......

That's it for now. I will update again when we have more information on which road lies ahead now.

Love and light
Annie

The Frillies

No matter how hard I try, I cannot stop the visiting 'frillies'. I find myself withdrawing from people in general, my emails stay unanswered for days even and I hear and feel myself going quiet. The normal things in life become a lot less important and I know I am not as connected to everything as I should be. I multitask all day long to keep busy - sitting quietly gives my mind time to wander - and its not the right time to let it wander around by itself at all.......
It happens, even though I sleep well and function fully. Its just that more and more of my brain is taken up by what feels like a million bouncing marbles and my stomach slowly becomes more knotted by the day.
But it will pass too and then the peaceful months will be here again.
love and light
Annie
:-)

Wibbly Wobblies of Waiting........

Ok - so I wobble slightly while waiting........... but I am still not quite wanting to admit it. When the time gets closer to the results for the PCR tests, I tend to read the boards more closely, tend to be more in touch with cml and then the idea of my kid having cancer tends to hit home again. Nothing like in the beginning, but still on the level of "Sh*t! I dont want this for him!" I get scared at times when I read articles that say that everyone with cml gets to a point where gleevec does not work for them any more - but then I read the boards again and I know that there are very many who are doing just great. There are always the difficult stories to read but fortunately with cml, they are so well balanced with the good stories

So its this enormous ping-pong match in my head, weaving through the thoughts and doings of the days and nights - even into the dreams at times.... Remember holding a daisy and pulling off the petals - he loves me, he loves me not. These days, but only on the worst ones, it goes PCRU, not PCRU, PCRU, not PCRU.......... PCRU PCRU PCRU!!!! I insist :-)

Today on one of the support boards, one member was apologising for "making a fuss" about her situation, which was and is normal in the first year especially. She felt that many others had much more to worry about than she does as her results are in the "really good and ok" range. To me there was no need to apologise at all, and it really made me feel 'normal' to read of her wobbles - she is almost on par with where Steven is as far as response to Gleevec goes.... It was good to see that others wobble over the tests results, wanting more, having to accept what it is. She helped me feel normal - thanks Jan!

And the days are creeping by until we get those results - wonder where my nails are going? LOL - I wonder how many years it will take before I take this in my stride?

I know I could and would not be anywhere near a smile if it were not for the people that are right alongside with me in this. Family, friends, unmet and met friends........... all are the building blocks to being able to keep my sense of humor going. And especially seeing how Steven is, emotionally and with the cml. I really am one very fortunate lady.

love and light
Annie

Hugs and thanks to Lisa B in California!

Talk about support.......

This is a picture on the Yahoo Asia Support Group .......... it brings a smile to my face and peace to my soul every time I look at it. The idea of having so many others all right there, all around the world fighting for the same thing is simply wonderful.

Technology has not only been amazing in finding the treatment of cml - its also created a place for us to share our experiences, thoughts, fears and happy times in an enormous pool of very caring people - the support boards online. It's brought together people of all cultures, beliefs and races from all over the world and shown that caring and love really is what makes us all function at our very best.

A big thanks to all on the boards who share their experiences and generally hold hands with everyone on this road - you are all helping my peace of mind and therefore, helping Steven with his healing too.

Love and light
Annie

The good days......

I have been not-so-gently reminded to update the blog........ thanks Serena! :-)

Life is going on in what is as close to normal as I can imagine. Yes, cml is definately a part of it... in a very strange and unexpected way, its not an unpleasant part of it either. My days include regularly keeping up with so many others that are also on this road and some that are battling different types of cancers. I find this as important a part of my day as the first wake-up cuppa coffee in the morning.

So, Steven's tests. Well, he had a cbc - complete blood count done when he had the blood drawn for the PCR that goes to Oregon and that came back pretty much perfect. His white counts have settled at a reading just below the 'normal' range but they are constant so we dont worry about that at all. Two of the other readings were a decimal point away from the normal range - all ok. And the PCR? The waiting has not stopped yet. This is almost week two over and done with, and I am not worrying about it, actually have not much thought about it much either. At times it pops into mind that my child has cancer and then I am awed by how research and development and giving and determination by some doctors and an incredible number of people has directly enabled my child to live a very normal life. :-) Therefore keeping me.........well, I was going to say 'sane', but I know a good number of people that would disagree with that, so let me just say that its allowed me to continue with my life as well. For this I am so incredibly thankful.

Tonight as we were rambling around the front garden, Steven and a friend drove up the road, stopping at the stop street right at the corner of our property. We exchanged some words that I am sure neither side could hear properly, but we could all clearly see that smile and hear the laugh and the fun heading down the road.. It's good.......... its really good.

I will, I promise, update this blog as soon as I get the PCR results - and thanks Serena for caring enough to bop me on the head! :-) It really is love that keeps the world turning, love and caring...

Love and light

Annie

Special hug to Shireen and Wendy! I am so happy with the good news!