Listen to Dr Druker!

http://su2c.standup2cancer.org/sutv?sid=0&vid=2469

This is a fantastic way of not only describing cancer but of the total determination of this man to really make a difference.  Just look at his face as he speaks..........

Thanks Dr Druker!  I cannot count the number of times I have sent that man a silent 'thank you!' 

He is one awesome man

love and light

Annie 

I have been thinking............

One of the advantages of traveling like we do is that there are plenty of loooong driving days where my mind just sets free on its own journey while my eye and the camera take in the passing scenery.  One of the topics most on my mind lately is the one of "rest in peace" when a person dies.  Well, I sincerely hope I don't offend anyone with these thoughts.  

In almost every culture or religious belief that I know of, one of the main themes is an Afterlife.  I have seen people put letters in the coffin with a person they love, we talk to them still after they have left this dimension - heck, we even yell at them!   We believe they can hear us and sometimes they even come to us in dreams.... Older cultures made sure that their dead were buried with company, servants, tools and food to  make sure they have a head start on the other side....   

Ok - so presuming that the majority of us believe that there is an afterlife, why, in Heavens name (excuse me!) do we want the person to Rest In Peace??  This conjours up the mental picture of a person lying in a coffin with their arms crossed just resting and not having a whole lot of life or fun at all.  Horrible in more ways than 100.  This is in no way what I want for those who meant so much to me while they were still living here...... I want them to be skipping between the planets, having a gazillion "Aha!" moments, grinning at the mischief they got up to here and laughing at just how serious we all still are back here on this ball of rock!  I want them to be playing their favorite sports, laughing with friends who got there first and generally having............yes.............."an Afterlife"!

I want them to be able to be all they want to be, in healthy bodies, with love and laughter and sunshine and beauty and happiness!  Not "Resting In Peace" at all!   Most cultures paint the mental image of this absolutely amazing place 'on the other side', where the colors are brighter, the flowers more beautiful, the fields and valleys amazing and the light just brilliant..... I don't want to rest in peace in a place like this!  I want the afterlife to be a place where the answers are known, or at least to know that the answers were not really important at all and maybe even the question had little value in the big picture.  I want the afterlife to be a place where there is no loneliness or sadness or somberness or pain. I want the afterlife to be a wonder-filled place.   I want to be able to go for long hikes, smell the air, fly with the birds and run with the wind - I want to LIVE!  

So from now on, I am not going to say RIP or 'Rest In Peace' or any such thing when someone leaves us early......... my hopes, dreams and sincere wishes will be. L.I.L.  This stands for Live in Love... Live in Laughter...  Live in Light....  Live in Life!

So, Adrian, Penny, Greg's mom - Carolyn and all others that have gone on ahead of us - I wish you anything but RIP - I wish you................... L.I.L!

love and light

Annie

 

A very sad day...RIP Adrian

Adrian was one heck of a guy....... a young man who could have been angry and bitter and done nothing - and he had a right to do that.  But no, he took life by the horns and really, really made a difference.  His fight was a success.  We all have to die someday, but we don't all choose to live in the manner that Adrian did, even if we have years and years left!  

He was ticked at the successes of this disease and the lack of knowledge about marrow donation and wanted to make a difference.  And he definitely succeeded!  That's not losing the battle at all - that's winning, and winning with love.

Adrian is hero.  He did not ask to be in the position he was in and I am absolutely sure that he had no idea just a few years ago that he would make such an impact on so many people worldwide.   When he was handed this situation - he dealt with it an a way that makes him a true hero - he gave and gave and gave again, no doubt saving many lives that would not have been if he had not been as determined as he was to change something really important. 

So, along with being a son, brother, grandson, friend and more, he was also a hero and a lifesaver.  His actions might well be the catalyst that saves my son or someone else I know and love......... how awesome is that?

I will miss his blogs, his attitude and his ability to motivate people he would never even meet.  Although the world is a richer place because of Adrian, it's definitely emptier now too.  Adrian will be a part of my life, a part of who I am, always.

Kay, words of comfort fail me - I don't believe there are any that would work.  I have tried not to imagine your pain - it's a futile exercise though and  just the thought brings the tears and wobbles.  I hope that I never understand what you are going through and I deeply wish there was a way to make it easier for you all.  My heart is broken for you and Keith and Carrie, and all your family.

It was because of Adrian that we started the combination blood and marrow donor drive in our little home town of Soddy Daisy, Tennessee.  This will be held as part of "Adrian's Army", in memory of Adrian and in honor of Steven.  

The wonderful part of having a combination donor drive is that the "blood people" will cover the cost of all marrow donors that sign up during the drive!  This is awesome as the cost is normally $52 per person to get 'typed' and added to the Marrow Registry.....  So - if any of you are close by on the 25th October 2008, please come and be part of the amazing legacy that Adrian has started.

My heart is heavy with Adrian's passing - I will never forget him or what he has done for me.

Love and light

A double dose to all that love him

Annie

xxxxx

Hello's and goodbyes...

Wow - what a wonderful 10 days this has been!  My daughter and her husband came to visit us and arrived right on my mom's 80th birthday.  We had organized a surprise party and it all came together so incredibly well.  It was a really wonderful evening with all my children in one place, all my family together - kids, mom, nephews, nieces and grandchildren too!

The days screamed by in typical fashion with the shop being very, very busy too.  And today it was time for more goodbyes......... Joleen and Billy left at midday and yes, I bawled!  Sorry Joleen! :) That left me a tad wobbly for a few hours but then I had to pull myself together and start some serious packing.   We are leaving tomorrow morning for about a month on the road! 

We travel the best with no definate plans so tomorrow we will pull out of here around 7am and only then pull out a map and see which road will take us back up to Canada, the Icefield Parkway and perhaps even up to Alaska again. We never really know where we are going which makes for some lovely surprises and, of course, many many photos.

So Steven and Laura came around to get all the goodies out of the fridge -  everything that would not keep, some chocolates and jerky too  :) And then that goodbye.  And the last goodbye today, after both my sisters and my mom too, was Lisa-lu who was already in bed at 9.30pm!  

What happened?  The kids always fought so hard to stay up late at night and us parents needed early nights, now if I call the kids after 9.30pm - they are asleep!  It makes me laugh.  And here I sit up till midnight many, many nights.

Steven looks good, tired but good.  He has his new schedule for cbc's and pcr's sent to him and I am absolutely determined not to worry at all while on the road. 

I am SUCH a fortunate mama.......... three amazing, wonderful, lovely and caring children all with equally wonderful partners and all so happy!  I really am very blessed and so thankful.

Here is a photo of us all together........ I am really so proud of them all.  Thats my mom on the left - what an amazing lady that is!  Love you all.. Lotsa :)

Love and light

Annie

The results are in.......

This time there are two different sets - one is the 'old scale' and then we have the new "International Scale". Of course my eyes caught the new IS (International Scale) numbers first, which are higher (but not worse) than the readings of the OS (old scale). I will put in a better description of the changes below

And again, he has bounced a bit... last test was 0.04% - this time it's 0.079%. 0.14 on the NIS last time and up to 0.33 this time. Big sigh. The trend I see is that its going around and around in circles...... This seriously makes me think about his diagnosis - and yes, I know that I am probably following the wrong road....... but his first pcr test done was 0.13646 at Vanderbilt and his next was even lower than what it is today - 0.0286%. So in the big picture there is NO change at all!

I know it's not bad. I know it's nothing to run in circles and pull my hair out about or lay with eyes like saucers in the middle of the night. I know we need to watch for a trend. I know. But........ it still makes me wonder, still makes me look at the results and see that his results have hovered all around the same area for over two years now. It just makes me wonder - for now, thats all.

Of course this opens doors in my mind and I wonder how to get a second, third or fourth opinion on this without being rediculous. I know that some people will have a postive pcr reading even if they don't have cml. Could it be that ..........aaaaaaarrrrrrrghhhhhh! There is no way to find out without stopping the meds and risking SO much. So I will just have to stop going down that road. Seriously, it does make me wonder though..

Here is the better explanation of the new vs the old way of reporting PCR results - this comes directly from the paper sent out with the result from OHSU:

Effective February 2008, BCR-ABL quantitative RQ-PCR values will be reported as both:
a) a raw transcript ratio (BCR-ABL to control gene); and also
b) in units of the 'international scale' of standardized measurement that has been recommended by an international consensus of CML experts.

The international scale (IS) defines a BCR-ABL level of 0.1% as being equivalent to a 3.0 log-reduction from a standardized median pre-treatment baseline value (that is, by definition, equal to 100%). This 0.1% international scale level is, by definition, a 'major molecular response" (MMR) as established by the IRIS study (International Randomized Study of Interferon and STI571).
In IRIS, 100% of the CML patients achieving an MMR within 18 months of starting imatinib therapy were free from progression to accelerated phase or blast crisis at 60 months of therapy.

Special thoughts to Kay and Adrian and family
Love and light
Annie

Still waiting..........

So today rolled in and rolled out with no results at all.  Steven went to the doctor, but apparently the PCR test results have not reached the oncologists office, even after it being a week since OHSU sent them out.  This is very, very tiring.  It wears one down and it takes a tremendous amount of energy to keep pushing out all the thoughts that naturally crowd in this close to getting the results.

I wonder if the doctors office even has an inkling of the stress and tensions caused by the waiting time?  No matter how I want to believe that I am doing wonderfully - I can feel it in my hair roots that I am 'frilly' around this time.  There is no doubt that I am doing better at waiting, and have been very fortunate to stay very busy with many  different things this time, but it seems inordinately long to have to wait for a test result!  Steven's blood was drawn for the PCR on the 15th of July and overnighted to Oregon.  This is a looooooong time to wait! And then to wait some more.

Ah well, what is - is.  I took this picture of doglet Allie keenly watching a Luna moth (ever so kindly found for me by Kevin, the Lawn Boy - Thanks Kev!), this evening and wondered at were I had seen such concentration on a face before..............mine!  In the mirror in the worst days of waiting.  That determination not to take ones eyes off cml for even a second in case it flies out of control.  Thank goodness it's not like that anymore.

May it stay that way.  Please.

So maybe tomorrow we will know those long awaited test results.  OHSU is going to fax them to the oncologists office and hopefully they will call Steven with the results before the weekend.

Love and light

Annie

Reaching for the moon.............

...............  now to find the falling star to lay the wish upon.

Busy days

Well, I had the distinct privilege of having this blog locked! They said that because I had "been identified as a spam blog" that I had to request a review and after two days I would be unblocked.

So I requested it and was duly unblocked. It's totally amazing how many words I had in my head when I could not post, how much I had to say but as soon as I saw that I was free to post on there again - woooosh - gone are all the words!

This is a very busy month. My youngest daughter and her husband arrive for a 10 day visit on Saturday, my mom turns 80 this coming weekend, and a tremendously agile and spritely 80 she is too! and then we leave for Canada to see if we can cath those northern lights (aurora boreallis) in the last week of August sometime - as soon as we can get packed up after Joleen leaves.

And Steven has a doctors appointment on Thursday this week when he will be given his PCR results. I have resisted calling and asking for them and will not be going to the appointment with him either. And amazingly, I am ok with both. I just hope that the results are back already or that hissy fit that is now dormant will grow and feed on me again. So, I am going to keep being cool and calm and otherwise occupied until the second he walks out of the doctors office with the results.

I am getting much better at dealing with this waiting time and my sincere prayer every PCR time is that I keep having reason to be cool and calm about it all.

We are organizing a marrow and blood donor drive here that will be held on October
25th, about a month after we get back from Canada. This is part of Adrian's Army - you have read his blog, right? (http://baldyblog.freshblogs.co.uk/) If not - go there and leave a message, send a prayer and a happy thought.

Adrian is the reason I have shifted my rear end out of neutral and am doing this donor drive. He has achieved incredible things with awareness about the donor drive, in the Uk, and just from reading the comments on his blog, I can already see that he has and will be adding substantially to the donor registry.

Now - this is how it works........... a donor over there in the UK could save the life of someone over here. If Steven ever needed to go to transplant, he could find a match because of the effort Adrian has gone to literally in his dying days. This gift is incredible and can only be repaid in one way - help add to that Marrow Registry too! It's all about balance........

I have the need and responsibility to Pay Forward, make a difference. If you can, tell someone that its not a terrible, horrible, awful process to donate - join the registry, or even organise a donor drive in your community.

Normally it costs $52 to join the Marrow Registry, but I found out that if we put together a combination blood and marrow donor drive, that the fee is waived for those that register. I simply could not pass up this opportunity to try to make this happen. There will be educational articles in the newspapers, and hopefully the tv and radio stations will play along in getting as many people to come along and also be a part of Adrian's Army.

I never would have dreamed that one of my children could possibly need this procedure one day. And I remember well that day when we sat at Vanderbilt under the sign that read "Bone Marrow Transplant Section". My blood still curdles at remembering those thoughts and fears. None of us match Steven and so in a way it is a selfish act to do this drive, but at the same time, how wonderful would it be if by doing this, someone's life is saved?

I know that cancer in one person affects a whole community, literally, and by having a drive like this I believe the community can take a serious stand against cancer too. I think its phenomenal that by the simple act of registering here, one could save someone in another country or right next door. I wish I could do this for Adrian.

Ok - thats my burbling for the day.

Love and light (special dose for Adrian, Kay, Carrie and Keith)
Annie

bouncing days

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

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

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

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

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

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

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

One little ant........

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

love and light
Annie

Living your Dash.....

“How Do You Live Your Dash?”

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

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

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

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

(thanks Kay)

love and light
Annie

Feeling creative.......

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

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

Love and light

Annie

Donors..........

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

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

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

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

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

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

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

love and light, hope and thanks
Annie

Ok, I give up....

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

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

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

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

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

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

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

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

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

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

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

Keeping an eye....

With pcr time approaching again - here's to "keeping an eye on the bug" :)

Rambling thoughts.....

There are always thoughts flowing around my mind that I want to put down 'on paper', but then time goes by and they change, morph into something else and even sometimes, the questions or queries in my mind become just part of life - no longer something to look at finding an answer for.

Right at the end of the work day today, a young guy came in to the shop for some computer repair. After getting started on his, or rather - his computer's, problem we started talking about other things, namely cancer. He mentioned that his dad had died two years ago from cancer, and my immediate response was "oh, I am sorry to hear that!" Now this is where this ties in to the things I have been thinking about this past week or so.... His response was to wave in the air and say that it's nothing to be sorry about, it just is life. He said they made the very best of his dad's last months and that when he died, he, the father, was happy and content. This young man realised at his age that death is a part of life and there is no need in being sorry about something that is going to happen to all of us. I am absolutely sure he mourned for his dad but thats not what I am talking about. He was not devastated - he was accepting of his dad's passing.

So I then asked him what he knew about becoming a marrow donor. He said he was already a blood donor and had heard that marrow donation was painful - very painful. Well, thanks mostly to Adrian, I was able to tell him just the opposite! It was a wonderful moment when he promised to sign up on the donor list next time he went to give blood! Here I got ONE person to do this and Adrian has probably got many THOUSANDS across the world to sign up for the donor list - Adrian, I sincerely hope you feel absolutely, incredibly, fantastically proud of yourself!

Here is a poster from the Anthony Nolan Trust in the UK with Adrian as the very handsome Poster Boy! Remember - that one extra person that signs up to the donor list could save someone precious in your life..... join the donor list, no matter where you are in the world. You could save a life and by saving a life, you will save a family, and a community.

Just look at what Adrian's donor caused to happen........ :) If you cannot join for whatever reason, see if you can help someone else do so. The "Sudders' Campaign" will have a worldwide effect, which makes it a worldwide campaign in my eyes.

Make a difference - talk to just one more person about becoming a donor.


Religion is based on the life after death, which is apparently a wonderful place, yet its a tragedy when people go to this amazing place? It's a tragedy that all the worries and aches and pains, both emotional and physical, is left behind to go to a better place. Yet we call this a tragedy. Makes me think. I am not concerned about my dying at all. Besides the fact that its pointless to worry about it and that takes up time out of the time of living, its something that I totally accept for myself. The tragedy, I think, is in the pain of the living left behind to try to fill the space of someone who has moved on to the next stage..

Many people think that reading these blogs of people with cancer is depressing, but its quite the opposite for me. I get so much good from reading what others feel and write about. There is so much to learn about, so many things that I can and do apply in my life, in my dealing with my children and others too. I do find that at times I need to wait till the next day to read certain entries, or just later that day. I find that at times I must listen to my soul and just step back for a while. But they always draw me back. There is so much to learn. Just the other day I was listening to a fundraising drive on the radio and parents were calling in with their stories..... well, I had to turn it off after a while - even though I tuned back in after drying my eyes. I tend to get too emotional at times. Fortunately it does not stick around long, but I find the tears flowing, my chin wobbling and my throat closing up very easily these last two years.

It's not only limited to the sad stories - I howl just as easily at the happy stories, the smiling faces of success after some or other treatment or the kindness of a stranger.. Are these my 'old age hormones' kicking in or have I just become much more sensitive or silly? Maybe it's because I am actually listening to these stories now. Before cml came into our lives, cancer was something that happened to others and those fundraisers........... geez were they everywhere and surely not necessary! Oh Boy! Now I know... now I listen and now I feel so much more. I think I 'get it' now.

Oh - and here is a question that has been screaming around my mind lately...... If I was diagnosed today with a terminal illness, how would I live tomorrow differently? And then - if I did live my tomorrow differently, I need to think carefully about how I am living today! We all have a terminal illness - LIFE!

My aim is to make a positive difference in someone's life each and every day.......at least one! What's yours?

Love and light

and a big hug for you, Kay

Annie

Sophie with a new look

Introducing Sophie all newly trimmed and looking like a puppy and not a mop ready to go to work on the kitchen floor :)

........and Allie still enjoying.
...and us? So enjoying both of them

Life's bugs.....

Here is a photo of one of the African Violet plants that used to sit on the window sill of my kitchen. If you look closely, those white things are not pollen - they are the discarded carcasses (I know there is a fancy word for them), and there are bugs all over the thing! Now you know why the plants used to be inside and are now outside on the porch. I itch just typing this!

So of course this got me thinking. Something beautiful, something I had always wanted - a beautiful flower that actually grows in my home, one that does not shrivel when I walk in the room, something beautiful I have relegated to outside. I have the reputation of making plastic flowers die...... But here I have this beautiful flower that I tended carefully and lovingly. And it has bugs! And I put it outside........

We have things and people in our lives that we love and so many of them are less than healthy or have some bug or other. No no, not literally! A bug like cancer, diabetes and other issues.. But we do not simply put them outside and get rid of the problem like that, we keep them close, we tend them even more and at times - we even get to love the bugs. They are, after all, part of the person we love.

So many times photos, or rather - nature, makes me think of things that go far deeper than I could have imagined my mind going. When I took the photos of this bird flying - I thought of all the times I just wanted to fly away from all the pain and anguish.....and I think of a good few people that I know of that are going through incredibly rough times, but are doing absolutely incredibly well under the pressure and pain who are doing anything but flying away.

And I think about how many people cannot deal with others going through rough times. I used to be one of them. I am sad that I now understand better the pain some are having, and sorry that I had reason to find out how to deal with it - but so incredibly glad that I am no longer afraid to confront cancer, death, end of life issues and so on. I have found a depth in myself and in others that was obviously missing before and I feel so much richer because of it.

I found in the early days of diagnosis, that one very important thing was missing from my life. Normal. Normal had flown away - gone without a trace. I used to lie in bed and just want normal. I wanted, no - *needed* - normal in my life. I wanted to know other's problems like before. I wanted to be told the little irritating things in the lives of others, I needed to have jokes shared, laughs created and ..........well - normal! Almost everyone around me became quieter - literally and figuratively speaking, they almost spoke in hushed tones and really had no idea what to talk about. That's totally natural and I am not criticizing it at all. It's just that 'normal' is one of those things that is most wanted during the roughest of times.

So next time you bump into someone having a rough time, acknowledge their problem of course, ask about it, but please move on to something normal too. Whatever you tell them probably won't change anything and they might not even remember what you said, but that ray of 'normal' in a dark space shines like gold in bright sunlight. I know it's difficult to do this, but it's really so important. It was to me.

Ok - here are some people you need your thoughts/positive vibes/prayers - whatever you have got to give.........http://baldyblog.freshblogs.co.uk/ Adrian is really in a rough spot right now - his family too, with no meds working and time getting really short. What an amazing young man this is. And Cam and Cora http://camcor.vox.com/library/posts/ - Cam is heading for a second transplant after the first failed and Cora is right there with him all the way - even having to leave their children on one side of Canada to get the treatment he needs on another. So many things to deal with in both these families and extended families.

There are so many people out there that are hero's in my eyes. Not in the typical way we think of a hero - but in a strong, determined, quiet and incredible way. The partners and parents, siblings and friends of those in difficult situations. Kay, Lea, Adrian, Diane, Shane, Cam and Cora are just a few that give me the ability to laugh, to smile, to enjoy every day ........ they give me hope and the knowledge that no matter what comes my way, I will deal with it - like they are. They make the space for me to breath. A big thank you!

Steven is doing and looking great! His next PCR test is next month and again I have decided not to worry, but at the same time accepted that I will. That's life - and I am most grateful for it.

love and light
Annie

Still here....

How many times have any of us sat on that fence, looking ahead at a world all out of focus? And how often have we thought there is no one that cares......... there's always someone.

love and light

Annie

Running deep..

They are just so right together! Love little Buzz trying to get in on the photo from his perch in the bag.... I laughed at them last night - they said that they would not expect me to keep my rear end in a chair during the wedding - I will be running around taking photos! :-) One less chair for them to put out... I am thrilled they understand.

As always, my mind has been really busy lately and I have felt quite emotional since Steven and Laura got engaged. I have three children and I love them all equally and I am happy for them equally and at the same time, this new step for Steven feels different. It's like it runs deeper.

When Lisa and Brian got married, it was still only months after Steven's diagnosis and I was still very freaky and deeply emotional about everything relating to him - you should have seen me pouring over the photos of him and Lisa at her wedding, of him and Laura looking so happy there........aaarrrgh - those were indeed rough days. I realize that unfortunately, I was not fully focused on Lisa's wedding and her excitement. It's not that I was not happy or excited or that we did not go wedding dress shopping together or chatted for hours about it, its just that that time was a 'freaky time' for me with definately divided attention. Fortunately I know that Lisa understands and we don't have issues about it. Thanks girl! Joleen got married in Hawaii and I think that was different as we have not yet met her husband and there was no time to plan or get excited or be involved in any real way. I am so fortunate to have such understanding daughters. So much is missed when living far apart :(

And now with Steven. In a way I feel guilty because I recognise and accept that the feelings around this wedding run much deeper than the others. Just over two years ago, all hopes of seeing this young man happy and living as he is today, dissappeared into the mist of terror that surrounded me. I remember thinking that we would make a plan to keep him in his own apartment for as long as possible and then bring him home when things got too tough.....see? I can't even say the words that come after that! What a wonderful surprise when we all realised that he had so much more waiting for him than being bedridden, having his life shortened and terrifying treatment.

Now I see this man smiling, loving, laughing, growing, responding to gleevec very well and simply moving on. I see Laura accepting every part of him, even his cml, and loving him with it all, and this is awesome. Truely awesome....

Even though I do understand logically that things with Steven will always be, ummmmm, maybe more significant? Not taking any significance or importance away from my girls, but....... You know, I could go around and around with these feelings but the right words are not happening. It is what it is and I know that the beautiful, understanding young ladies that my daughters are, I know that they accept. Maybe one day I will too. And even better, maybe one day in about 30 years time it will all be equal again :-)

And the other day I sat on the grass in the front yard looking around me at the house, the garden, seeing everything growing so beautifully, the doglets chasing each other around, Frank gardening - and I thought. I thought that life could not get much better. It felt as if I was sitting in a bubble of happiness, contentment and peace. We are not rich, we don't live in a fancy neighborhood and we don't drive fancy cars - but I realised, as I sat on that lush green grass in the sunshine, just how incredibly blessed I am and how rich in happiness and fortunate I am.

Talking to a friend of mine today, it seems as if everwhere one turns, someone is having a really rough time, learning to live with devastation of some kind. Cancer touches us even if its not directly in our family. When someone in our community, school or friend circle gets a diagnosis of a disease like this - it really rocks the hearts of those in 'good places' with this disease. It destablizes the security we tend to feel and it also makes me realise how important it is to let the people in our lives know how much we treasure them - we never know whats just around the corner. Thanks Debs!

And so, with those thoughts, I want to ask you to talk to just one other person about registering to become a marrow donor. Just one this week. Even one will help.

Love and light
and an extra big dose winging its way to Kay and family in the UK. You are in my thoughts all day long.

Annie
Xxxxx

Ringing in the good times......

Steven and Laura got engaged in Florida this past week........:-) Laura has been a wonderful part of our lives for a goodly while now and I am totally thrilled that they have made it all official - or started down the road.

A big and very sincere congratulations to them both - I think they each picked a simply awsome person to walk along the road of life.

I am so tremendously proud of both of you!

love and light - tons of it!
Annie

Caitlyn Raymond International Registry

This is the address of the Caitlyn Raymond International Registry - bone marrow and cord blood donor registry. http://www.crir.org/registerdonor.php.

From this site you can reach all affiliated donor banks around the world, you can get the contact information from there and the name of the organizations.

Adrian is in the UK and the wave of awareness he is making should be carried all over the world, as much as we can. If you register in your country at one of the participating donor banks, you could save a life, a family and a community somewhere across the globe.

What a feeling it must be to save a life in this way - is it going to be you?

I just got some simply wonderful news, and will share it with you tomorrow - yup - you will have to wait! :)

love and light

Annie

ps - REGISTER!

This week

It's been a good and gentle week and at the same time one that is filled with all ranges of emotions, from totally at peace to feeling so much pain for a friend dealing with what must be the most difficult thing a mom has to do - prepare to say goodbye to her child. I don't know that its possible to really help anyone in this position, apart from trying to keep giving a dollop of 'normal' where possible. At times its difficult to know what to do, if anything, because the need to share my uselessness in the situation is great and what is 'normal' seems so absolutely trivial in the face of her circumstances. To ask questions means then that they need to be answered and I dont know that I could do that under those circumstances. Not to ask questions could close a door that is not really closed - maybe one needs to talk about it, to have the questions to answer. To share my sadness feels selfish and unnecessary as she has enough of her own, but not to, could be seen as not 'getting it'. But then there is no way I could 'get this'. This losing a child must be a very lonely road indeed. There is no one around you that can possibly totally get how you are feeling, no one that can possibly totally understand. But if you need a hand to dig your nails into while hanging on - mine's here. Always.

And on this side, Steven is doing great! We are so absolutely fortunate that he is reacting to Gleevec so well. I remember so well being scared, very scared and am really enjoying this feeling of quiet and peace that has arrived since the last PCR results came in. Even in these quiet days I find myself counting the weeks till I need to order the next PCR kit from Oregon - timing it just right to get it here in time for Steven's appointment for his labs. Those people who send out the kit are really wonderful....it arrives exactly on the date we pick and they are always so kind and friendly and keen to make things work right. It would be wonderful if all doctor offices had that feeling around them.

You know something strange? I was listening to an interview with Adrian from http://baldyblog.freshblogs.co.uk/ (go read it if you have not already!) and I heard this small little line...... I KNOW I have heard it before. I know I have, but this time it resonated differently than the other times. "Leukemia is cancer of the bone marrow." Well, duh - I knew that! So why did it sit on my heart for hours this time? - well longer than that, evidently as its still niggling at me. Had I pushed this thought out or have I come so far down the road in two short years that this is just re-facing reality? No, it does not put me into a wobble or tailspin, no it does not scare or frighten me any more than I have been, was or am. It's just that it.........well, how do I explain it. It was said differently, it was like hearing something new yet knowing that its not new, but seeing it in another light - yet not being any surprise. Nothing has changed so maybe its just that its more often referred to as a blood cancer, and when I again heard the words 'bone marrow cancer' - it felt deeper somehow, deeper than blood cancer. So the question then comes to mind - if its a bone marrow cancer, why is it called a blood cancer? Same thing? Ok - I know, that's why the internet is there and I will go and look that up.

The more reading I do, the more I meet and talk to people who have either been through a transplant or love someone who has - the more I realise just how incredible it is that donors are in such short supply and even worse that the opportunity and process is so unknown! Before Steven was diagnosed, I was an organ donor - you know, on the back of the drivers licence and the instruction to family for after I died. But that was all. It never crossed my mind that I could do anything as important as donating marrow and having the chance of giving life while I am still living! What a thought that is. I always imagined that a transplant entailed a kidney, heart or other part that could only be harvested once I was gone......... Imagine being able to give someone another chance at life and then actually maybe being able to meet them and actually see the outcome of it all? Wow. Just imagine!

How many times have we all heard others saying "I want to help people" when asked what they want to do when nearing the end of their school years especially? Well! Sign them up! Get the programs into the colleges and schools and universities, teach the kids from young so that they can look forward to being a potential donor when they get to the correct age. Make it what it is - critically important to so many people, their friends, family, kids and communities.

I think its wonderful that Adrian is doing this in the UK and I am hoping that it will overflow in a big way to other countries... lets all help get this moving in the right direction - we never know when its going to be one of us needing some healthy marrow. We never know when one of us will have the opportunity to help save a family, a community. It's never just one person affected by cancer - it's absolutely everyone around them too.

And now - here's introducing Sophie - Sophie is our newest member of the family and is already proving to be a perfect pal for Allie.... She is only 3 months old, but already the same size as Allie and is a total cutie.

And I have learned that there is absolutely no possible way to not smile when watching two pups screaming around the garden with great gusto.

love and light

Annie

Rising above it all.........

We will - we absolutely will rise above it all.......... wings on the wind, pounding surf below, old shells littering the ground, new territory ahead.... so graceful, so free, so whole.

Treasuring moments

There are so many things swirling around in my mind lately - things that I have wanted to write about, but somehow they have not gelled enough to get here - so far... here are some.

Firstly, I heard some really, really beyond-sad news this week. Adrian, who had both aml and cml and writes his blog http://baldyblog.freshblogs.co.uk/ is in full relapse after his bone marrow transplant and will not recover. I am totally stunned and very, very sad about this. Please go and read his blog, send him your thoughts, think of his family too. His mom has become a really dear friend and the thought of what she is going through, reduces me to tears.

And now I am going to push this too..... when you read Adrians blog, you will see his determination to get more people to join the marrow registry, to show them how easy and painless it is. He is in the UK. If you are too, please pass the word around as far and wide as you can. If you are in US - do the same. No matter where you are, please make sure that you get as many people to sign up to their marrow registry as possible. Adrians blog has videos on it that show the process - its not difficult, not dramatic and you can choose how to donate. Be an Angel, be a hero - a true one! How else can I ask? How else can I beg?

Adrian's donor did a beautiful thing.... his transplant gave Adrian many more months, gave us time to learn from this young man, to laugh with him and now to cry with them all , it gave his family and friends time with him, precious time and so much more. And then there is Lea, http://www.caringbridge.org/visit/leamorrison, who also had a transplant and is doing very well. She has also been a light in so many lives and I know for sure that without having the opportunity of following both of these people and getting to know both Lea and Kay, my life would have definately been much poorer and emptier. There are thousands that have had transplants, which means that there are thousands of true life hero's - the donor's and recipients........

But there are more donors needed. Many more. Please, please think of anyone you know, yourself included if you can, and encourage them. Show them Adrians videos of the process and hopefully the registry will grow. Here is the link to the USA site with all the information you need to know about: http://marrow.org/. The UK links and the videos are on Adrian's blog and I am not going to put them in here because I want you to go and read about this incredible young man and see his strength and I want you to help him with his dream of swelling the donor registry!

So many of my experiences has stopped being only that - they have become food for thought - as with my photographs. An empty beach is not really just an empty beach anymore.... sometimes when I look at those photos it talks of the times we have to walk alone in life, especially when there are not even any footprints along the way. Other times it talks of the times we want and even need to be alone....of times when we have to be alone .. of times when we are meant to just enjoy nature without any interruptions. We walked that beach, laying the first footprints of the day and probably, in places, the first footprints for a good long time. It was wonder full - yes, two words. Wonder filled.

The peace while walking along this long beautiful beach - Outer Banks of North Carolina - was lovely. I love it when my mind shrugs off the worries and the niggles of everyday life and digs deep into the things that really count. That never really happens for me in places where you can hear traffic, tv, radios or other people.... The beaches or the mountains are the places that help me find what's inside of me, and grounds me and helps me deal with what is now normal in my life and what is truely wonderful in my life.

What is normal now? Normal is that stream of worry, that faded shadow that will always hang around us now, it's the absolute knowledge that cancer is firmly in our lives and will always be. Even if the cure for cml is found and Steven is free of it, I know that the people I have met along this road will always be with me and so very treasured. Normal is learning to hold the hand of someone hurting while waiting for a result, someone newly diagnosed, someone just hearing the worst. Normal is learning to reach out for the hand of someone who totally understand when I need it. Normal is dealing with things that I never thought about, let alone thought I could handle. Normal is not only dealing with it, but not taking it on on a "cellular level". That sounds weird and strange, and although I care incredibly deeply for everyone I know now, I cannot let it bring me down or else I would be of no value - to myself, to Steven or to those whose hands I am fortunate to be able to hold through whatever we are all going through. Normal is reading daily about strong incredible people, people fighting some or other form of cancer, dealing with it the best way they can. Normal is being able to talk about cancer and death and loss without running away.

I don't know what to wish for - that the 'old normal' were still here or to keep this new incredible normal that is so filled with totally amazing people and strength from everywhere?

Mothers day swished around recently and it was truely the best Mothers Day I have known. I thought about the years with my three amazing sprogs, and looked at who they are and where they are today...... All three are happy and living their lives in really wonderful ways. None of them are professors, rich or even college grads, but they are all incredible success stories in my eyes - beautiful people. I realise just how much I took all those early, un-scared years for granted - it's so easy to do that when things are going right. Now I know just how much can go wrong - not just know, but I *know!* And this makes me treasure these people, my children, in my life much more than I ever did before.

To end this very long ramble ....... please go and visit with Adrian baldyblog.freshblogs.co.uk and help him in his push for the marrow registry. It really is very critical to so many of us and it might just help somone else's son or daughter, mother or father etc, have a chance at life or at the very least, some extra time with those that love them.


To Adrian, Kay and all your family and friends........... an extra dose of love and light


Annie

'Tis good.......:)

Aaaaahhhhhh. It's frighteningly amazing just how I can measure the stress I felt in the first 30 seconds of getting another set of good results. The world seems brighter and I honestly think I ever breathe deeper. I know that my crabbiness leaves instantaneously - even though I did not realize that it was even there!

Today the doctor called Steven with the results - and Steven got them to fax him a copy of it all too.... PCR: 0.040. last PCR: 0.080. I see that for the first time, the new International Standard is being used in reporting the PCR. It gives a slightly higher reading than the other/old way of reporting. Steven's reading with the IS is 0.14, but this does not mean that his actual reading is higher, its just a standardized way of reporting the results. I am thrilled that they are moving towards International standardization of this test! So it's *good* and in the right direction and I am mightily relieved and now totally unstressed and even my face feels loose again! I must have been frowning a lot more than I realised.

I was really uptight when the doctor did not have the results in on time for his appointment and this has got me thinking of the lack of care - emotional care - given to so very many people dealing with cancer. No doubt more of this will come tumbling through my fingers at some time, but for now, I am happy, relieved, content and looking forward to a week at the beach.

We are leaving on Sunday morning for the Outer Banks in North Carolina - Cape Hatteras Island, Okracoke Island, to mention just a couple. There are long stretches of undeveloped beaches and we are really looking forward to days of slow beach walking and bicycle riding and photo taking. Doglet is not looking forward to the drive, but I know she will love the beach.

Love and light
Annie

Guess what...

So Steven went to the doctor today but the pcr is not in yet, they say. So I called Oregon, and guess what - they sent it over a week ago. Can I get through to the doctors office now? Noooooo.
And of course Oregon could not fax it to me nor could they fax it to the doctors office without them inquiring about it.
Big Sigh.
Sometimes I think that dealing with cancer is so much more frustrating and scary than it needs to be - if the tests came back in time, if they were put in the right folders, if the right tests were done, if the doctors, nurses, staff even had an inkling of the stress the whole family feels around test time..... if, if, if......... then it might be just a tad easier.
Maybe.

Blue Bird for you......

This picture of our resident blue bird made me think of so many people and things. Firstly, it made me think of all the color that has come into my life since Steven's diagnosis - the color being the love, the handholding, the cyber friends, the hope that even little kids give me and the strength of so many going through really tough times - also all those going along such similar roads to Steven that this new normal feels almost just plain normal. Whenever I look at this picture I think of you all... with a special twist for the mothers.

And it makes me think of the waiting. We sit on this fine wire of normalcy and its shakey at best in good times... but we are never alone - there are always people on that wire with us, maybe not always in focus, but there nevertheless.

I was fortunate enough to capture this awsomely beautiful bird the other day - I stalked him all around the garden, especially for Lea http://www.caringbridge.org:80/visit/leamorrison and Bianca http://whitesinnz.blogspot.com/ and Diane who's son Shane went through transplant. www.caringbridge.or/visit/shanemyers .

Yes, I get 'soppy' and many of my photos have "thoughts of life" attached to them....but that's me :-)

love and light
Annie

waiting, waiting, waiting....

Still waiting for those pcr results. But this time it's by choice........ I am not going to call for those results. Not this time. When Steven stopped by for a visit over the weekend, I asked him if he wanted me to go with him to his appointment on Thursday. His response was that I was very welcome to go with him, but that he felt fine and that the doctor would probably just tell him that anyway. So I decided to take another step backwards and let him handle it himself. I also suggested him that I would not call for the pcr this time - he could get it when he goes to the oncologist on Thursday afternoon. And he will bring me the results on his way home.

He was so positive, so relaxed, so assured that if I had said I would go along, I felt that I would be undermining some of this confidence. It's not my disease and if he is comfortable in dealing with it - then I have to let him get on with it (thanks Kay :-))and not always be inbetween him and the cml - or at least try to put myself there. I so want to cushion any bad news, protect him from whatever I can - but in reality and in fairness, I should not. Not only can not, but I should not.

So the longest 4 days started as I gulped on the words that I would leave this up to him. It's the final days of waiting that are the worst. I know - I have been over this, and over and over it again....... but it's there. Only this time it's been much easier. I am not sure why. Maybe I have been busy with other stuff, maybe I have been focussed on others going through a rougher times or maybe I have just been having too much fun playing with photos again.

It's not that I don't think Steven is capable of dealing with all this on his own, I know he can and will. It's not about his ability to deal with it at all - it's about my ability to step back and let it be. I have to keep up this absolute belief and trust and knowledge that he will be fine, no matter what. It is easy these days when I see that smile, that spark in his eyes and the sense of mischief and his plans for the future and his strength and trust. I have to know that we have the strength to deal with whatever comes our way - so many others do, why not us?

When I talk to my girls, I can process that they have good and bad days, that this is the normal way of life and I don't worry about them unduly. Heck - *I* have good and bad days, days that I sound, feel and look like something the dog dragged in, but in the big picture I am great. But with Steven...... well, I am still learning to do that again. Even when he is tired in a very normal way, when he is aggravated or frustrated, my antennae go up and I find myself in an emotional holding pattern until the next time he sounds great. Just a short conversation can make or break my peace of mind.... That is so silly because, like everyone else, at times he is just busy, preoccupied or just plain being human! He has never been one to moan and groan about feeling ill, so why would I automatically think that if he sounds ok, that he is ok, or vice versa? I did not pick up how he was feeling before diagnosis, why would one day of being tired now give me a reason to worry? hmmm

Wow - where did that all come from? I had not conciously thought about that and it all came burbling out of my fingers - it must have been playing around my mind enough to have made this appearance. Always better out and now I can look at it openly and learn to adjust these feelings too.

It still amazes me just how different today is than two years ago. That seems like yesterday and yet a lifetime ago. So many good things are going on in all our lives and the bleakness has moved away - we are so fortunate.

So - Thursday evening is The Big Day this quarter... more then.

Love and light
Annie

Who's in charge?

Doing good! No frillies yet............... actually it's been weird in a way in that I have not even had cml in the forefront of my mind this past week. It's always in the back of my mind, aways will be, but the wait for the results this time has been different. And I think its for a number of reasons.

I have heard it many times before but finally these words sunk in properly - or so it seems. "We will always be waiting for test results." A number of people in the shop this week have asked after Steven and what a pleasure to be able to say that he is doing well. They want to know when the next test is and each time I have said that we are waiting for results, and always will be. When one result comes in, we immediately start waiting for the next....... Well, if we are always waiting for a result, am I then going to spend my days worried? Am I going to lose out on today because of what tomorrow might bring? Steven does not......I was going to finish that sentence with "so why should I?" but I know why I do and I know why I cannot change that. I am a mom, I will worry more than necessary, more often than needed and on a different level than he will. But I have to put it in perspective, I have to see that this young man gets on with life, planning for the future, trusting in the future and simply moving on with life each day. Now why should I also not do that? I can add a touch of worry in there......wanted or not, it's there......but today I believe that I can do so much better, not only for me, but for Steven and everyone around me if I put the good above the bad, the calm above the worry.

Today, while working in the garden - yes! I did - for the first time I spent most of a day in a brand new pair of pink garden gloves, scrubbing around in the garden and having a total blast! I planted seeds, transplanted newly sprouted vegetables and sewed seeds - generally having so much fun and giving me much thinking time. One of the questions that came to me was 'to whom do we give control of our lives - who is in charge?' I don't mean this on a religeous level, rather on a very human one. I read a good many blogs about others with different cancers and diseases that are crippling their ability to live good and healthy lives - some temporary and some permanent and yet others who don't know which one will be them yet. And I wonder at their humor, their strength and ability to laugh, smile and inspire others. From the very young Bianca to many others in their 60's - all these people have a sense of humor well intact. How does someone with cancer do this? Is it because they realise how precious life is? It is because a self preservation part of them brings out what they need in themselves? Whatever it is, its wonderful.

And also - how many of us have, at some time or another, put our lives in the hands of someone else. As long as this person thinks well of me, loves me, likes me, accepts me, or maybe just waves at me - then the world is right - there is hope and reason to keep going. If their feeling stop or change, for whatever reason, whether they can help it or not - then that somehow takes away all reason for living. What a tremendous responsibility to put on a human being... and how is it ok to give all our strength and ability to someone that wants to move on or away? Why is it so easy to give away our days to others and to circumstances and to hang on to the negatives and the worries? Is it easier to give it up than to take care of ourselves and our actions and thoughts and feelings? I know it seems that way when the going is tough - but ultimately its always happier when we take charge of ourselves as we should. Easy to say...so easy to say at times.

So this brings me back to the question of whether I will be ok if Steven's test results are not. I have to be. There is no option if I am totally honest. The only option is how I will deal with it. Will I take responsibility for my feelings and fears or will I park all that on 'the bad test result' and let the good part of life get buried under the bad? Well, for today, I don't need to deal with this question and I hope I never do, but if I ever do have to - I hope I can find this entry again and read it to myself. Or at least have someone quote me!

No result, no loss can change deep inside me what I am unless I allow it to do so. Today the sun shone, the temperature was perfect, a gentle breeze blew around cooling us off in the midday sun and no amount of good or bad results would have changed the fact of any of this. Only the feelings that I let happen.

Are our feelings a concious choice? Maybe. I know that if I go into this pcr waiting time with worry - I bite my nails, I become tetchy and just generally not an easy person to be around. If I go into it with a smile, hope and a knowledge that I will deal with it, no matter what - I find myself smiling more often and even enjoying gardening! wow. Talk about control!

There are times when I do feel that worry creep in, and sometimes even that gut churning worry - but then I remind myself that it is what it is. Nothing I feel, do or think will change anything exept how I feel, think and look. No amount of wishing or hoping will change those results or the course of this disease in Steven. I have to accept what will be. Maybe some of these thoughts have been brewing for a while, and they sure have helped. Go and look at the smile on this little girls face http://whitesinnz.blogspot.com/ - it sure makes me smile and makes me humble too whenever I see it , which I do often.. Hi Bianca!

There are so many people out there who just don't know what a difference they make in my day - just having someone share their story, even if its not exactly the same as Steven's, helps. It builds my courage to read about mom's going through really rough times as well as others battling cancer themselves - I have it way easy by comparison to the many mom's out there, let alone the kids dealing with cancers.

So - who's in charge? Today, I am in charge of me! May it be so tomorrow and the next too......and I wish this for you too

love and light
Annie

Nothing quite like a friend......... :-)

You are a DOLL, Kay! I wish I could tell you how many smiles and warm feelings these flowers brought. They are beautiful in so many ways. Thank you, thank you!

I have found that on this road of dealing with cml in our lives, that there is nothing quite like a friend walking exactly the same road. Talk about priceless.

gentler days.....

Sometimes it's in these quieter days and weeks that many thoughts can come out and play without becoming too intense or deep. It's then, and now, that I feel strong enough to handle some of them, or to at least to acknowledge that they are there...... so, here are some ...

In the first weeks of Steven's diagnosis, I spent a good many nights looking out of our kitchen window to the parking lot of the local funeral home, just absolutely knowing that there was no way that I could ever deal with losing my child - any of my children. The despair that I felt in my gut was so dark and deep that it took incredible strength, and Frank's gentle arms, to pull myself away from that place.

I don't ponder much on that thought these days, not only because he is doing so well, but I have found that its not a good use of time at all. Right along with trying to figure out why he got this leukemia in the first place. Was it where we chose to live, was it because I smoked in the house, was it...was it..... was it?? What a waste of time. It is what it is and I am tremendously thankful that there is not a definitive cause or reason that I just know would come with all the "if only we hadn't....." self beatings.

And still, when I see that some people ask the question "what is the pain like at the end of life with cml", my heart stops for a beat or three. Another question: "What is the longest cml survivor". Well - stop! - he is still getting there! So now I admit that it's not only because I recognise the futility in thinking these thoughts late into many quiet dark nights, it's that they simply just scare the poop out of me and I won't go there! Whatever it takes to stay sane - that's the road I travel these days. At least I'll keep trying to.

Also, in those very early days, when I heard someone talk of a child they lost and I saw that they were able to go on again and even to laugh! Well, I was angry - HOW could one laugh, live and even breathe after losing a child (God, please let me never find out!). I think its much like what we all say before having kids - "I will never let my little daughters run around with uncombed hair", or "My son will no be seen in public with mud on his face" - you know - all those things we think before reality arrives. Well, this is another one of those, I guess. I recently read an update on a blog of a mother who's daughter, Courtney, passed away just over a year ago.... she just recently found the ability to see a beautiful scenery again,as we still see it. "we" being those that are so incredibly blessed not to have lost a child. Go to her blog - its some incredible reading. http://www.freewebs.com/courtneynicole/myblog.htm, Her latest entry about seeing this beautiful view really helped me realise that we grow strong as we need to. It's helped me to understand that life just goes on for those left behind after someone dies and sometime, somehow, the light will come back if we allow it.

Ok - enough of that - its getting late and the night stretches ahead and .......well, enough of that for now.

On Saturday - I listened to the telecast given by the Leukemia and Lymphoma Society with Dr Brian Druker who formulated Gleevec. It's this mans work that is keeping me from joining the ranks of those too many mothers that have lost children to cml. I thank him every day for the life of my son. When I first started listening to this telecast, I was amazed at how emotional I felt at hearing him talk. The notion that this incredible scientist and doctor, who had not only taken the time to meet with us all and give us so much verbal hope along with the medicinal hope, that he takes the time to keep us updated, takes questions and instills so much peace into our lives - its simply astounding. He answers every email that anyone sends in relation to cml, as does his Nurse Carolyn, and they are always there to guide and inform even our local doctors . What an incredible team - I am more deeply grateful to them than I could ever describe. You can listen to it here: http://lls.hipcast.com/deluge/074596e8-877d-7241-1780-3247db8a3727.mp3.

So another peaceful day passes by. I realise now that whether I like it or not, cml is such a deep part of my life that there really is not a day that passes that I don't think of it in one way or another. I am just so very thankful that I can think of it in a positive way these days, the friends I have made, the hope that is there, the unending support of dealing with cml in Steven, and the sharing of normal things in a normal life too. It all adds up to the makings of a much stronger me.
I have found myself playing with the camera, testing different lenses and having a total blast with it - this is a really good sign of where I am inside. Creativity seems to dissappear when stress hits too hard, and I am really grateful for this quiet time, even though it means I literally have hundreds of photos to sort through after a good weekend! :) Here's one - it's condensation on a water bottle... pretty, hey?
Here's wishing many more gentle waiting days for everyone waiting for test results, and may those results bring a happy tear and a big smile.

love and light

Defining times

We all want the best for our children, we want them to be healthy, happy and not ever to have to hurt, and yet we know that the unhappy and hurtful times are those that probably make them, and us, grow the most. I have found this true for me. When things have gone terribly wrong in my life, sometimes I hunkered down, hibernated while I licked my wounds and found a way through the issues and tough times. Other times I have had to put a good face on it all, fooled the heck out of the rest of the world, and sometimes myself too, and again found a way through those times. And looking back on my life I see that these are some of the defining moments of my life, these are some of the springboards that hurled me into the good times, the happy times and the times I would not exchange for anything.

So why is it that we wish away these springboards in our kids lives? Is it perhaps because its so much more difficult to see pain in their eyes than it is to deal with it ourselves? Is it because, although they are going through the pain, we feel it too? I remember when the kids were small and they hurt themselves, or were very sick, I remember how my stomach clenched, how my heart accelerated and how I broke out into a sweat at times in sympathy with their pain. I remember the pain of watching how they worked through a break up of a relationship, or glowed in the sunlight of a new one when I knew it would not work out. Thats all very normal in a mom, I know that, and I wish every mother these pains, pangs and anguishes...it means their kids are growing and so are they, but of course I don't wish anything other than just the normal scraped knees and tonsils etc.

But it's different with Steven now. It's so deeply different. When he is happy, I am not only happy for him - I am also deeply grateful that he is able to be happy despite the leukemia. When he is sad, my heart literally hurts, but on a much deeper level than with my girls. When he hurts, I would do almost anything to stop that from happening - he has enough to deal with, dammit! When he is stressed, I feel the same way - could I take on that stress, in less than a heartbeat. It's not just the stress, it's the effect of stress on his system, its the fact that he is stressed despite that I don't want him ever, ever to be stressed in any way at all.

The normal experiences, feelings and frustrations of everyday, take on a very different depth in relation to Steven. I don't think there are the right words to explain it, but I do know that I cannot shake this. I cannot shake this feeling that goes so deeply with him, and will probably have to accept that since he was diagnosed, my feelings for him run deeper than I could have imagined and on a different level than with my other two children. Now this is not something I wish on anyone else.

And I look at where we are today. Steven looks great, sense of humor in perfect place, he deals with work and everything in his life a heck of a lot better than I remember doing so at his age. His pcr results are all in a safe place, the leukemia is well controlled and most times when we see him, he feels really fine. We are so incredibly fortunate. And yet this deeper depth of feeling persists. I think that when (notice the 'when', not 'if') the cure is found for this disease and he has been cml free for 10 years, maybe then my feelings will equalize. I don't know. It's as if I am extra grateful for everything this eldest child of mine feels and experiences. It's both a good and a not good feeling......

I know that through all of Steven's growing pains, the happies and the hurts, I know that I will worry just that little more, just that little deeper and I also know that no matter how much I worry - what will be, will simply be - and in some way he will come out stronger and able to deal with the next step. He has done it so far. He has been incredible.

Just a few short years before Steven was diagnosed, I had come through what was possibly the most difficult time of my life. It took years to get through the problem and a good couple of years to emotionally recover from those years, so one of the feelings that I had when Steven was diagnosed was incredibly selfish...... I was angry that my life was not worry free any more, angry knowing that I had lots of adjustments in my life to make in order to deal with this. I was angry that what I thought were going to be a good many years of gentle living, enjoying life and just generally being relaxed was all gone. Totally gone. I felt like stamping my feet and yelling, kicking and screaming and demanding that quiet time back again!

And now I see how much I have grown through these last two years, I see how much stronger I have become and how much richer my life is because of Steven's horrible diagnosis. I wish for him ten times the love and growth I have experienced in these two years.........and more. He has already come so tremendously far, dealt with so much and through his dealing with it, taught others that through a bad situations can come so much good.

The next pcr blood gets drawn on Thursday and I am still refusing to become frilly this time :) Lets see how three weeks from now finds me.......

Love and Light