quieter soul

So where did all this newfound 'freedom' leave me? Well, its a growing and learning process, and I know that I have tried it before. This time I have done better than last time, but to be realistic, its only been about a week! Steven has the flu and I have rationed myself to one call every second day - it's such a fine line to walk - call him and feel like I am fussing, or don't call and then it feels like I don't really care about him feeling sick... big sigh. But I did what I thought was best and called him with all sorts of valid reasons that had absolutely nothing to do with flu or cml - of course! :) But it gave me what I needed to help along the weaning process - a telephonic robo-scan. And I bet if I asked Steven, he would not mind me checking up on him and I know that I am probably making a bigger deal out of it than what it is, but this is what happens in my head when something like the 'simple flu' raises its head in our lives.

But on a different level - deciding and understanding and accepting that I need to step back a little, or a lot or that simply it's not necessary to be this involved at this stage leaves a space in my days and in my head. It's not that I have something that I need to stop doing, it's not as if I am not still obviously involved the same as I was last month and the month before - it's just the level that is different. But it still leaves that hole, a gap, and empty place.

I didn't think that would happen - or even could happen. Just an acceptance of something, a mental backing off.......... it leaves an obvious gap? So I have been playing a lot of snood on the computer. The shop has also been much quieter this past week which has also probably contributed to the 'empty feeling'. But no, that's not it. It is more than just having extra time, it's more than not doing something I am used to doing - whatever that was, it's something deeper than this. It's like giving something up, something tangible. It's a definate letting go. Or letting be.

It's not a bad feeling in any way - just sort of confusing at first and left me lost in a strange way for the first day or three. Then it moved to being just an "extra space" and now I am slowly filling that space by playing with my photographs and generally just getting on with it all. But I am leaving that space available - I guess it's like a fat cell, always there and always very easy to fill, but probably better not to have it full up at any time at all. Ok - even I had to laugh at this analogy and wonder where it came from..........

I honestly find my soul quieter this past week. I saw Steven briefly this evening and even if he is still all bunged up with flu, he looks well enough that I really am not concerned at all. Maybe this is just the flu this time again.

We are now at the two year mark since his diagnosis - so many memories come flying to the surface and it feels like lifetimes ago that all that happened. Also just like yesterday. He was diagnosed because he had flu that just would not go away. Hmmmmmm. Nope - not worrying. Yet :-)

And may my 'worry cell' stay relatively empty for ever...........and ever.

love and light

A Man...........

This weekend it will be two years ago that Steven came in the front door with a strange and crooked smile on his face and told us that the clinic had referred him to an oncologist.

I think that the body and mind are amazing things. (And here I have to say again, that I can only talk about what went through my mind and cannot begin to try and describe Stevens thoughts and fears at the time so I won't - this is just my viewpoint.) I know that I did not freak out right there, actually I don't remember too much about what I did other than tell him that I would go with him to sort this out - ha, suuuuure! - and I cancelled our just-reserved trip to Florida. No, I don't remember crying then, I don't remember much at all about that evening. Steven had just moved out of home three weeks before and he went on home. I do remember thinking very clearly that all our lives had changed forever, but I dont remember my exact thoughts at that time at all. It did not look as if Steven fully understood what an oncologists speciality was and I was happy to leave it like that for then. Maybe it was me that did not want to go into it. And so one hell of a ride started. One day I will ask Steven what he remembers about that time. Not today.

He wondered out aloud at the doctor's office the other day why I was still so worried about him and I came up with a flip reply for the moment but then found myself thinking about it quite a lot over these last two days and the truth of the matter is that I am not worried anymore - I am just gently mom-freaky now. I was not able to write down all my thoughts about this latest doctors visit, because it has literally changed so much and I had to sort some of it out in my mind first.

Over these last two years, I am sure that I have been labelled a neurotic mom, an overprotective mom, a nuisence, a pain in the behind and other places too, just to mention a few - and its true. I have been. And in many ways that's been very good for me. I have been so deeply involved in every aspect of Steven's appointments, blood draws, visits and anything else relating to this cml. Soon after he was diagnosed there was a Leukemia and Lymphoma Society meeting in Chattanooga and we all went. It was there that I got this 'Relentless' bracelet that I still wear - its now a very faded light pink but firmly on my arm :). Anyway, at this meeting we met a tall, dark doctor who I promptly nailed to the wall, figuratively speaking, and asked him ALL about EVERYthing about cml - logs, pcr's cbc and all those things that I was starting to vaguely understand and needed immediate (if not sooner) answers to! At some point I remember looking at the poor mans eyes and realizing that I was being unkind, to say the least. He was very gentle and very sweet about it all, and I knew even then that he was reeeeeally happy when I moved on ..... lol.

He is now Steven's doctor! Dr S. I thought it was the same doctor and I remember thinking that he was a gentleman as well as a gentle man and very kind not to have just brushed me off that night that seems to be lifetimes ago now. He must have recognised one desperately scared mama.

Anyway, after Steven's appointment on Thursday, he told me that he remembered me and all the questions I asked him and told me that I had kind of bombarded him with things he did not have the answers to! Then he blushed and apologised for telling me this. You know - the combination of him telling me that he remembered and what his thoughts were at the time (and I am sure his feelings that night were stronger than he let on when he told me - lol) and then his blushing apology really convinced me that this was the doctor and the man that I wanted on Steven's team. By that time I was already convinced, so this was really just the setting of the cement.

Before we went in to this appointment, I told Steven that I wanted to back off and start letting him 'do' his appointments without always butting in. He was totally comfortable with this - he probably has always been, but I had not been seeing that, or even looking for it. So I did, I sat back - but it was not necessary. Doctor S immediately locked in with Steven and asked him the things I was only too keen to answer before. I think that the first doctor probably tried to do this, but Steven was still shell shocked and me frantic so I took over, then with Dr J, I again did not give Steven, or even the doctor, the chance to take charge and both he and the doctor got used to me 'leading' the appointments. Big Sigh. Not good. I am only realising this as I write this now. wow

Anyway - it seemed to me that Steven and Dr S got on very well, Steven asked him a few questions of a few small things that were concerning him and Dr S answered in plain english with a wonderful sense of humor and caring. It was really good to see how easy it was between Steven and his doctor - and maybe it happened because I finally butted out and let it happen! The one thing that I was wanting in a doctor for Steven, I was not allowing to happen because of my insecurities and my need to try and be in control and make the situation just right. Maybe this time I got it right. Finally!

Dr S had wonderful advice: Everything in moderation, live your life to the fullest, watch yourself as everyone should, take your meds, and keep an eye on cml and again - live your life to the fullest, as everyone should. I asked him about Steven not reaching 3 log reduction at the two year mark and he said that because he was getting stable results with his pcr and the numbers were so low, not to worry. As long as he stays stable.

He did say that no one knows what this disease is going to do - it could lay dormant for ever or could go into blast at any time but that worrying about it was not going to help - no one knew. I asked him about reaching PCRU faster than Steven was headed - again, stability and quality of life counts for more than a quick PCRU, he said. He stressed that gleevec is still so relatively new and long term data is not available yet - so, keep an eye on the results of regular testing and live life to the fullest.

Mama's heart sang! So now I don't feel the need to go with Steven to the doctor next time - I know he can handle it, I know he can handle doing The Kit PCR too. They call him 'the kit man' there because of the OHSU PCR kit he came in there with last time.....they hate it. And that brings me to the other thing that really woke me up at that appointment. But first a little story.......

Many, many years ago, I was seriously overweight and joined a club to help lose many many pounds, which I did successfully. This class included going to weigh-ins every week where even our bracelets and earrings came off before stepping up on that dreaded scale. One day while waiting with sweaty palms for my turn on the scale, a little boy right behind me asked his mom why that "thin lady in the green dress" was there. I was wearing a green dress! It was me he was talking about! I looked around first to see if there was anyone else in a green dress before fully realising that I had reached my goal in more ways than one. It was something like this that happened in that doctors office.

Dr S was talking about Steven going for a bone marrow transplant and Steven had answered that he was not considering that at all right now. Docs response was "clever man!". I wanted to look around to see who he was talking to but there was just a wall behind me and no one else in the room. I KNEW the doc was not talking to himself..........so that left just one other person in the room he could be talking to. My son. A man. A MAN!? Talk about having to bite my lip, yes the tears did spring to my eyes and it felt kinda foolish. I know he is 24 years old, has been out living his life for two years now and did pretty flippin well before that too. He was more of a man at 20 than many 40 year olds, but did I ever really see him as A Man? My son - yes. Steven - yes. I always call him 'my boy' to his face and in reference to him - an endearment. A Man? Wow......... I have a son that is a man. Am I old enough to handle this?? I am so incredibly proud to be the mama of a Man like this - yes I am ready for it :-)

So. Now that I have recognised some of my failings in dealing with Steven's doctors, made some appropriate adjustments, and had a tearful few seconds while fully recognising my son who became a man in his mama's eyes while sitting on a crinkly sheet of paper in an oncologists office, now I also recognise that this leaves me in a totally different space from last week.

Last week my behind was firmly parked in my rocking chair that bears the name of "cml - thy worry", this week I see that I have time and space in my mind to fill where the part of cml that was not mine, lived before. I am already out of that rocking chair, ready to take the doctors advice - live life to the fullest! Steven will, I am sure, let me know when and if he is worried about something relating to this cml and I know he will let me have a copy of his results and I am not passing it all off on him and letting it go totally- just gently letting things that should be his, rest with him finally. Letting him be all the man he is and has been for a goodly while already. I don't need to be with him at his appointments unless he asks me to be, I know now that he can do this - like the man he is.

I do know that if things go into "wobble mode" then I will be right there under his armpit again, but hopefully then I will remember the lessons of this time period and help him handle it, not take it away from him.

What a book this is, but all so good even though he is dealing with the flu again, sore throat etc, I am not worried - his immune system is strong, he is sensible and careful and aware. His sense of humor is intact and he is moving forward in a way that I am now going to copy. Well, try to anyway. I am sure that I will not stop worrying overnight, not stop wanting to know as soon as possible what the cbc and pcr results are, but I definately feel much more relaxed about it all.

Who would have thought that two years down the road with cancer in our lives, I really cannot think of a single negative thing to write about. We have learned so much, grown so much, met truely wonderful people and I think that we all live in a better space than we did before - so much more aware of living our lives to the fullest.

A really big thank you to Dr S for helping put my mind at rest like this, and for speaking to my son like the man he is, for treating him with care and humor so that he came out of the consult with a smile and at ease. Thank you for helping me sit back and leave this up to you and Steven.

And Steven, my son, my boy - A Man, a wonderful, truely amazing man - Fantastic! I do love you so.

Love and light
Annie
ps - watch this space when the next pcr is due to see how freaky I am then! LOL...

Valentines Day

A Rose for everyone..........

This day is an extra special day in so many ways. Its romantic, its fun and its a day when we can say, one extra time, that we love someone. I have never believed that this day is exclusively for lovers, or that it needs to be specifically romantic. It's simply another special day handed to us to make the very best out of it and to show our love in many different ways.

So - with that thought in mind I want to say thank you to everyone that has helped me through these last almost two years. All of you have helped give me my life back so that I can enjoy this Valentines day. I love you for your hand-holding, I love you for your support, your waiting with me, for understanding my cruddy moods around test time, for picking me up or re-aligning my thinking when I sink too low and for the joy and relief you so openly share when the results are good again. I love you for your friendships, for going with me and sometimes dragging me way beyond and away from cml. I love you for sharing your stories and scareds with me. I love you for all you know you have done and all you dont know you have done too.

So when I spend that romantic time with Frank this year again and tell him one extra time that I love him and enjoy the day once again, I will send a thank you to all of you too that I am sane, or insane enough (in a good way!) to be able to do so! Frank has kept my keel even on an hour to hour basis at times. When I get 'frilly', he is still Frank, stable and solid and caring and watching with wide shoulders and ever ready smile.

And Steven......... without your sense of humor, your way of dealing with the cml, without your openness in sharing all the details of your treatment, I could not have survived these past two years. You, most of all, have kept me on the right road, you have put this into perspective and many times put me to shame with your wonderful way of dealing with cancer in your life. I love you, my boy - you are my hero.

Laura - how do I say thank you for your love, your support and your keeping a keen and loving eye on Steven? I wonder if you know just how my heart sings when I hear you saying that you check every night that he has taken his meds? I wish you could feel the peace in my heart when I see your determination to live a normal and good life with Steven. There are many ways to say thank you - but none really say well enough how deeply I mean it. I love you, Laura, not only for what you do but for the wonderful person you are.

With love and light to you all

and with the deepest of thanks

Annie

Got them!

Yesssssssssss - we got the results today!
PCR 0.082% (last time was 0.095)
Log reduction 1.7 ( last time was 1.6)

Slowly slowly they creep downwards........:)

I called the doctors office around 9.30am this morning and when 2.30pm came around with no return call, I emailed Debs for moral support and with her encouragement, called again. More waiting until finally at around 4pm the call came in. The ladies were really sweet to me and I think they heard my wobbles in my voice by this time. It was strange - this time the waiting was easier but maybe I sent my worries into the 'anger feelings' about not getting any return phone calls. Either way, I was like a very seriously pms-ing, menopausal mama tiger cat today!

Amanda at the doctors office was really sweet and sorted out the problems, even calling Oregon to get them to fax the results to her.

So tonight all is sweet and well again. Steven's response was as if he knew it all along and was just glad that now I knew as well. Sweet boy..

And I am tired. Deeply tired. So off to bed with me with a thanks to Amanda and everyone that held my hand through the wait this time...... its so incredibly helpful when I know others care right along with me. Thanks!

love and light
Annie

Still waiting...

Did I get a phone call today from the doctors office? After two messages? No. No phone call. The frillies increase in intensity, but I am still sane, still smiling and really treasuring today. I spoke to Steven this morning and all is well with him;

Lisa sent me this picture of McKenzie a bit later today................ ...... and Joleen's husband Billy arrived safely back from Iraq this afternoon! What a day :-)

So I thought I would add this one of little McKenzie from when I was babysitting a few weeks ago - she looks so .... snuggly :)

What is really great is that although the wait for Stevens results is now getting long and I definately feel my blood pressure rising, I am more able to deal with the wait. Definately better this time. The shop has been incredibly busy and what with all the house renovations we are doing on the weekends, I am also very tired. Maybe being so tired helps too. This is good.

This past weekend was great because I had the opportunity to break down a very strong built in cupboard in the back room, which entailed repeatedly and wildly swinging the hammer, pounding away at something that was not designed to move - and then it did! Success! Now I need the equivalent hammer to beat the h*ll out of cml. Why do I see Steven running away?? LOL

Hopefully tomorrow we will have some good numbers. I really look forward to hearing Steven's voice when those numbers are good!

love and light

Annie

I called

Yesterday I called the doctors office to change the date of Steven's appointment from Valentines day to the week after......and to see if the pcr results are back yet. They took my name and number and said that they would go and look at his chart and call me back.

Today I called the doctors office today to change the date of Steven's appointment from Valentines day to the week after.......and to see if the pcr results are back yet. We got the date changed. Then they took my name and number as said that they would go and look at his chart and call me back.

Tomorrow ----I won't call

Do I take these people a cake and cookies and send them pretty "sucking-up" cards or do I get angry and at least ask for consideration in the face of dealing with cancer in my kid or do I do nothing? Is it too much to expect a return phone call when told I will get one? Even if it is to say that there are no results yet? So now I am left to decide whether to become a 'pest', a 'neurotic mom' and call every day, or to sit and wait for that wheel to turn at their pace.

In every doctors office, especially oncology offices, there should be a person assigned to do nothing else but to return calls - especially the calls from worried people. Just a "no news yet" phone call would go a long, long way to lengthening my life. Ordinary mothers easily become very worried mothers when it comes to their kids cancer test results.

So the wait goes on. I have to say that for some reason its been easier this time - maybe beacuse Steven looks good and there is no reason to expect a bad result. It's easy to be calmer under these conditions. Will I get used to this one day? Who knows, but one day at a time and an hour after these pcr results come in will tell me just how tense the wait this time has been.

Expecting good news soon
love and light
Annie

The illusion ..........

I was reading Rhonda's blog the other day - boy does that lady have a way with words! Read for yourself at http://www.rhondaradliff.blogspot.com/ There you will see her post about road signs and life. It's really an excellent read.....

Anyway, it got me thinking about the things in life that we take for granted - things like markers, directions, markers and yes, the road signs of our lives. It might be the idea that someone will always be around, or that we feel as if our personal lives are stable, or perhaps that the house we live in will always be where we live - you know, the assureances of life. They really are not there. So this got me thinking about a different time in my life and the lesson that I got from it. At the time, the lesson was not learned. Now it is :)

Many years ago, just after arriving in the USA, we did a river trip down the Tennessee River from Spring City to Florida. It was during the many storms of early 1994 and many of the river bouys, the markers were washed away or dragged out of place.

When we found one that was in place and we could figure out where we were in the river channel, it was wonderful! One day we found out that those bouys were all in the wrong place, and another day we found about 25 of them washed up on the side of the river. It took us all a while to close our mouths again - we had nothing to guide us if they were all there! We could run aground! Yet another day we unexpectedly ran out of daylight before getting to a marina and had no light strong enough to guide us - what a night that was - and yes, we did run aground - twice.

There was a tremendous amount of debris in the river too and there was one particular very long day that I sat on the bow of that boat in the freezing cold, signalling which way my sister had to steer to stay clear of the logs and trees floating downriver. Most we missed. Some we did not. (life)

But the river kept on flowing, the next corner arrived, the next barge passed by as did the next town and marina. And our journey carried on. It took us down that river even if we were scared and lost. And the views along the way were awesomely beautiful.......... they still are.

Now I think of this in the light of Steven having leukemia and sometimes I even mentally throw away those bouys and markers and just enjoy the ride.. and learn to Just Be, one incorrectly placed marker, one road sign, one bouy at a time.

Nothing is permanent, nothing can be guaranteed to be there tomorrow the same as it was today. In many ways this can be disturbing, but in many ways it frees me to be all I can be today, just appreciating everything in my life today. The roadsigns and markers, the bouys of our lives are just illusions. Lovely safe-feeling illusions, but illusions nevertheless. They change, move, dissappear - thats if they ever really existed after all.

I am beginning to wonder if anything I wrote here makes sense.........

love and light
Annie

Just because............

A sea anenome in California

Penny's Mom

The 23rd of this month was another very sad day. Penny's mom, Pat, passed away from lung cancer.

Penny was my friend and partner in http://www.penniesforcancer.com/ who also passed away from lung cancer in October 2006.

I like the picture I have in mind of Pat being greeted by Penny on the other side..........

There are two incredible ladies, gone from this awful disease. So sad. My heart breaks for the family, dealing with all this grief in such a short space of time.

Love and light
and a hug to Trish, Peter and all the family
Annie

The Elephant......

Earlier this week The Kit arrived. This is the box that OHSU ships out to us so that Steve can have his blood drawn and sent back here for testing. The Kit sits like an elephant in the refridgerator until Test Day. Test Day was Monday.

Having blood drawn is simply having blood drawn, right? Yup, a few years ago it was. Now its something more. Now its that reminder, it makes me robo-scan my kid more closely. This Monday Steven looked a tad pale and tired and he had not had a cbc for over a month, and............ well, and.

So off we tootled to the new doctors office to have the labs done. I had the kit on the front seat of my car - and had to giggle - I had this clear picture of an elephant in my front seat, a pink one. Ok - so the stress was getting to me, but at least it got me smiling :) When Steven was called in I went along to make sure that the blood was mixed properly as I knew that this lab was probably also not familiar with packaging the blood like this. The poor girl was so nervous of doing it all wrong..... it did not matter, if it was wrong, we would simply do it again, no big deal. Then Steven sat down in the chair and started pulling up his sleeves in readyness for the 6 vials of blood that young girl was going to draw. I looked at this young man who was dealing with this all. I took in his pale and tired look and pleaded 'blood-aversion' and left. Chicken. Yup. Steven also said that he does not look when they do it and he managed a bigger smile than I did.

I waited outside in the waiting room for him trying not to be aware of the people there looking at me with 'that look' in their eyes and then I watched how they looked at Steven when he came back out.

His cbc came back as close to perfect as one could dream for and the wait for the PCR has started. We have not met the new doctor yet - that will happen mid February.

Sometimes I dont know if I just want to be worried or if its just the way it is... I try so hard not to get frilly, I know that there is so much good going on around this leukemia, I know that Steven is doing well and even that he is entitled to be tired and pale at times. I know this and yet the worry won't quit at times. It's not the nailbiting, sleepless nights type of worry anymore, its just a low key humming.

But its a good day today! The cbc is great and .......I will not worry too much about that blasted pcr result! I will not worry too much about that blasted pcr result! I will not worry too much about that blasted pcr result! Have I already said that? LOL

love and light
Annie

Good Days......

After the last visit to Dr J, Steven came out of there saying that "the doctor does not care - its all about the money". That's sad, but what is sadder is that I got the same impression. Now I know that different people see things different ways and that we are not fully used to how the medical profession works. I also know that I probably have a 1960's view of how doctors should respond or treat their patients emotionally. So although Dr J is probably a wonderful doctor, he was just not for us at this time.

So now Steven will be seeing Dr S, who is in the same organisation, but at a different office. It would be wonderful if we could interview these doctors, ask them questions before 'employing' them. Thats how it should work. Instead, you get sent to a doctor while still in shock, the average person kinda believes that the doc will have their best interests at heart and when the relationship does not work, its a horror story to change doctors. Of course I am speaking generally - I sincerely hope there are doctors out there that really do care, and show it too, about their 'employers'.

Now THERE's a thought! We are the employers of doctors! Why is it that it feels like the other way around? We should be able to interview them first, check out their credentials (which we can do, with limits) and expect the very best service for the incredible amount of money we pay out to see them! I look at how much a doctor visit costs - yes, insurance covers it all except a co-pay, but the amount is astronomical for the short number of minutes one is actually in the presence of The Doctor. Why is it that it's us, the 'patient' that seems to be grateful to see the doctor, and not the other way around? They should be doing their best to keep us coming back, instead it really feels as if it does not matter to them at all. So far, anyway......hmmmmmmmmmm.

Anyway. I really hope that this doctor is one that Steven will 'click' with. I would love to stop feeling as if I need to be one step ahead of the doctor, stop feeling as if I need to check up on whether the doc has the best info and I definately need to know that the doctor will at least do the tests in the way recommended by Dr Druker himself. I will not stop checking for a while, even if this move is a good one - well, until I know that Steven is with a team that really has his best interests at heart.

Steven looks good and when they were here the other evening for supper, it was so good to see him taking his gleevec just as normal as can be. No fuss, no problem and no hiding it. It looked as if it was all just a part of life for him. And of course it is - and it was good to see it happening so smoothly. Whattakid :-)

Two other good things happened this week. I got to babysit my youngest grandchild for a whole 5 hours! This was the first time she was away from her mama, my middle child, for more than 30 minutes and it was very interesting :-) She cried a little, McKenzie - not Lisa!, ate well and snuggled up to me all the time, either sleeping or just laying there while I hummed, sang and prayed very hard that she was done showing me just how awesome a set of lungs she has! That kid could take the place of a lighthouse! LOL. And then we got a box in the mail with an American Flag, a certificate and a note from our son-in-law (SIL) who is in Iraq until February. He flew a flag for Frank and I on Christmas day! And then sent the flag to us. How awesome is that? My daughter( my youngest child) is also a Marine, based at 29 Palms, CA and reeeaaally looking forward to him coming home again.

So, my bootstraps were obviously well pulled up - thanks again Kay for finding them for me! It feels good to have so much good going on around us. We are so thankful for every healthy day. I am very aware that everything could change in a second and very aware of those whose paths are not as smooth as Steven's, and therefore mine, right now.

Monday is PCR draw day again, then 3 weeks wait for the results. It will be easier. It will be easier. It will be easier. And then we get to visit with the doctor on...............yes, Valentines Day!

love and light
especially to Kay and family and Lea and family
Annie

Kay found them!

Kay found my bootstraps all the way in UK! No wonder I could not find them.. :-) Thanks, Kay, for a wonderful laugh.

It's awesome to have a friend who would spend the time to look up and find me some bootstraps....... and then send them so promptly.. And pretty too....Love and light and a special dose for you Kay - what a laugh you made this side........ :-)
Annie

Boot Straps.

Today the Christmas Tree came down. Apparently we were in 'serious danger' of being called Rednecks for leaving the decorations up so long. :-) I thought it was ok to do so, but one of our customers enlightened us to this dilemma, so down came all the lights and the tree. I dutifully thanked that tree for being the conduit of so many happy and wonderful thoughts as I carefully packed all the baubles and my special gifts away till the end of this year. It was time, and now with all the decorations down, it is really true - Christmas is over and 2008 has arrived in ernest.

It was, all in all a good year. My lucky number has always been number 7 - thank goodness I did not have 7 children! LOL. As I was saying - 2007 was a pretty darn good year all in all and there is no point in pulling it apart, so I am simply going to try and make 2008 even better!

Now I just need to find my boot straps. My dad always used to talk about pulling oneself up by your bootstraps and getting on with life. Well, I cannot find my bootstraps! 2007 was great, Steven seems to be doing just fine, my girls are wonderful and everything is fine and dandy - but now I find it so incredibly difficult to get myself motivated to DO anything. I know I need to look into changing doctors for Steven, I know I need to start that process. I know that I need to start another year with a better plan on how to deal with this again.

And what I need to do is to stop trying to pretend and wish that cml is not still in our lives. Why can't we just start this year with a clean slate, no cml, no cancer. No? Well, the thought is there so much and I know I have been trying to push it all aside. There are actually times when it almost seems true that its all gone, no more cml, no more 'robo-scanning' my son as he comes in the door, no more counting the weeks till the next PCR. Speaking of which, we need to order the next kit from OHSU this coming week. His PCR is due the week after next. And then the wait begins. Again.

This writing is supposed to be therapeutic! But now I am starting to depress myself! Ok - snapped out of it...... I read some wonderful, heart-lightening words on Jerry's board just the other day. I know that I have heard them before, but this time they kinda sunk in. Here they are:
Dr. Druker supports your feelings on Quality of Life. He has said that ones QOL is more important than a deeper level of remission. Since we don't have a cure for CML with the current drugs, why should we torture ourselves to get to a lower level of remission.

Steven has not yet got to a 3-log reduction and his PCR results are not screaming downward to that valued PCRU as this mama would love, but he is still below zero and not wobbling too much at all. So these words are really comforting. Oh God, please let Steven not wobble with his PCR too much, let that disease not progress. Let him live a gooood loooooong life - waaaay beyond my days! please

I have even thoughts that maybe he just had a fungal infection..... there have been those diagnosed incorrectly like this. How does one even start to try and figure out if there was a mis-diagnosis, how do I NOT try to see if this was not the case? I know, I know - wishful thinking. But what if??

Am I hiding from it all? Where are my friggin bootstraps!!??

love and light
Anni

Oh Christmas Tree......

This year was different in so many ways with Christmas. Turns out that it was wonderful in every way.

One of the differences is that I added some special decorations to our tree this time - they are little gifts of different shapes and sizes, all in honor of someone that is close to my heart and fighting cml. It's funny how when I put them up I thought of individual people, but as the days went by and people kept coming to mind, many of those little gift wrapped decorations depicted my wishes and hopes for more and more people. Walmart did not stock enough of those decorations and the tree simply would not hold the number needed to cover for everyone in my heart or mind. I know that those who know that they were 'hanging in my tree' won't mind morphing into a thought of someone else. I know because they are all wonderful people who would do the same :-)

When I walk from the lounge to the kitchen, I have to go through the dining room which is not really a diningroom, but anyway - that's where the Christmas Tree is. I was going to take it down this past weekend but then I thought of a friend who said she loves to sit in the lights of the tree in the wee hours of the morning, and I started looking at this tree differently. So every day, I switch the lights on the tree and each time I walk past it I really, really enjoy it.

Since Diane shared that oh-so-peaceful picture of her sitting under the lights, I really love the sight, smell (yes, its a real pine tree) and beauty of our Christmas Tree - somehow a sense of peace is covering it too. Now I am not quite ready to take it down yet and next years tree is going to sit right here in the lounge next to my side of the couch so that I can also sit right next to it, under the lights, but not in the wee hours of the morning! Besides, that will save me many unnecessary trips to the kitchen :-)

All of those 'gifts' hanging in the tree has also brought such a good feeling - they glisten in the lights giving out stars of hope..... Each person who has touched me in this journey of cml, has been a gift to me which is why I picked them to hang there. For so many years, a Christmas Tree was lovely, but it just marked a time of the year in my life. So many Christmas trees were packed away or thrown out with relief in getting my space back again, getting life back to normal and so on. This year - the taking down of the Christmas Tree will be marked with a certain amount of sadness - I know I will miss it and all it meant to me this time. I will miss the thoughts and peace and hope that came from this tree.

As I am writing this, I realise that a Christmas Tree 'should' bring thoughts of God and or Jesus to mind - but I have to admit that the overriding thought and feeling that it gives me is love. Is this not close enough?

And now two verses of the carol sits firmly in my mind:

O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!
O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!

For every year the Christmas tree,
Brings to us all both joy and glee.
O Christmas tree, O Christmas tree,
Much pleasure doth thou bring me!

What do I wish for this new year that is about to hit us all squarely in the face? Well, I wish that the days are filled with knowledge that we are loved, knowledge that we are treasured. I wish that the days are filled with Peace - peace about what has passed and peace about what this new year will deal out to us all. And definately that the days are filled with Love. Love that comes from family and friends, strangers and God. Love that will wrap around us all and keep us warm in the storms that are sure to rage - and love that takes our breath in the good and wonderful times. I wish for many wonder-filled days.

Love and Light
Annie

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.