And so its time again....

It's time to see what Leukie the Dragon is up to again.... The PCR kit is ordered and winging its way this way, or soon will be, for that appointment later this month.

My mind has been otherwise occupied these past couple of months but as the time gets closer for that test, I find that cml nudges its way to the forefront of my brain.  Steven looks and sounds great, but that does not stop this mama from really just wanting those test results to be in and great again.

Earlier this year I saw this as sidewalk art in San Diego and immediately thought  that this is what its like in a way - Leukie the Dragon always lurking, leering at us from somewhere.....but I must say that this rendition of him makes me smile.

love and light
Annie

Be sweet.....

And time goes by, everything on the leukemia front with Steven doing so much better..... its like someone threw oil on stormy water and ....... well, you get the picture.

Because my life was very tied into staying on top of, and in touch with everything leukemia, this leaves a fair sized hole in my mind.   Even though Steven's tests have been great for a long time now and I have slowly spent much less time being 'freaky' for the past few years already, I still find that I really have to make a sincere effort to fill my mind, to stimulate my brain, to move forward and know that it will all work out exactly the way its meant to.  I need to work hard at being creative, to enjoy things without the fear of that potentially 'coiled snake' waiting to turn my life upside down again.

So much of this past month I have thought of those who have lost someone they love....  To get up and move on has got to be so incredibly difficult.  At times its got to seem easier just to sit and not cope at all, to not get on with life, to literally just stop.  And that pain is endless.  How does one do it?  Especially those that have put their days and nights into a hands on situation of caring for someone, whose days were literally filled with that person.  That adjustment must be huge.  Beyond huge, as it covers every aspect of every day.  I don't believe that anyone can prepare fore a person dying, you cannot prepared for that hole in your day, the loss and the extra time on your hands....... no matter how much you know its going to happen, or hope that it wont.

One blog that I read really got me thinking about all this...  The 14 year old son passed away and from what it looks like, some family of mom are being critical of how she has dealt with his illness and how she still is.  Wow..... that really is beyond understanding.  She, and the rest of the family, are absolutely entitled to grieve in any way they want to without someone who has not walked their path, saying how they should.

So..... if you know anyone that has lost someone and is bending in the darkness, at a total loss about how to cope, or even dealing with it in a way you don't understand, please be kind to them, be sweet, fill a few minutes of their day with them, let them talk about the person that is no longer with them, ask them about the pain they felt and still feel.   Just never ever tell them how to grieve, how to feel or how to act while they are coping with this pain.

And be thankful for the days that you do have with those you love.  Always.

Love and light
Annie

Can it be 5 years already?

5 years today we heard the words that would change all of our worlds in more ways than we could have imagined, then and now.  Those words seemed to have challenged us.....  I remember Steven saying to me in the hospital that 'everyone dies, I am going to try not die from this."   

He has done so much more than just survive.  He, together with Laura, have flourished and lived their lives more fully than I see in most young couples.  Without Laura, I would not have been able to relax as much as I have over the years - even tonight she reassured me that she would 'report him' if she thought it necessary! What a lady :)

I am so incredibly proud of the young adults in this photograph... they are strong people, bound together by a love that wont break, bound by a goodness that is just beautiful.  Steven and Laura, thank you for letting me into your cml world, being patient and understanding of my 'freakiness', especially in the early years.  Lisa and Joleen - thanks for giving me the understanding to deal with it all while standing by and learning to deal with it yourselves.  You have all given me the strength and love to keep on going......I love you all more than I can say.

5 years.  So many lessons learned, so many people have come into my life.  Too many have left, leaving huge gaps but in the big picture I think we have all grown in ways that are so good and so solid.

Now....... on to the next 55 years!

love and light

Annie

Almost five years later.......:)

Have you ever sat and watched the most glorious sunrise or sunset....... one that makes you just sigh that deep sigh that plants a smile on your face and in your soul, makes your shoulders drop in utter relaxation and the smile lines around your eyes deepen?

Well, after feeling a bit like "Senor Frog" for a good while, we saw that sunrise....

Yes, Steven's results are in already.  Last time that wonderful number was 0.025% on the international scale.  This is a good number in relation to cml, its not a bad number at all in response to Gleevec and we were quite prepared to be at ease with things if he just hovered around at this number, or close.

But nooooo, not this time.  This time it's.... enter beautiful sunset/sunrise, place the happy smile...drumroll please...... There are NO numbers, his counts are too low to report as a number :)
How flippen amazing is this!!??

This time Steven's counts were only listed as 'weak positive' on both the old scale and the new International Scale of reading the cml cells.  This means that out of around a million of his cells that were tested, only a very few - yes, less than 10, came back with a sign of cml.  This is as close to totally undetectable as one can come.

This is something we have all been hoping for, waiting for, for almost five years now.  And yes, I am aware that they can bounce up again, and down again and go on like that driving me close to nuts as possible........ but for now - for now I smile deep inside and outside and the world is beautiful and life is just that extra bit better than best.

And with this news came a need to say a huge Thank You to so many that have endlessly held my hand, listened to my gripes and worries, felt my tensions and lived with my moods in the less than nice times.  Although these past years since Steven was diagnosed have been difficult and scary, they have, in retrospect, not been terrible.  Steven is alive and doing well, we are all getting on with our lives and we have all grown into better people because of the whole circumstance.

I know that I could not have got through these past five years without you.  Yes you.  And you and you too.  Every one of you have been there for me, for Steven.  With us.  You have held me up, pushed me along, led me and walked with me along the road to where I am today.  I think that if my cells were put under a microscope, there would be a little of each of you showing up in there, a part of what makes me whole and capable.

You come from all around the world with widely varying circumstances, but each with a good heart and a hand held out.  Thank you.  Thank you!

And so, with these wonderful results in hand, we head into the summer months of 2011 and year number six living with cml in one of us.  What a wonderful way to close off these cold winter months and start a new year.

And just as a funny thought....  just a few years ago, I would have been absolutely offended at any part of any of my kids being described as "weak positive" and I would have been horrified at any test result with so many zero's...  now I am soooooo happy!  Funny how things change.....gotta love it.  :) 


I wish smooth sailing on the oceans of life for everyone.
Love and light
Annie

Looking for full sunshine again....

Yup, its been a while since I last updated the blog....  Since we got back from the cruise, the weather has been really cold around here and a challenge to my state of mind...... oh for those lovely balmy days in the sunshine.  As I write this, the world outside is gently being covered in a white blanket of snow, once again.

And so, I guess, it is like the seasons passing by - this waiting for the pcr test first and then that seemingly endless wait for the results.  Yes, it has definitely become easier to deal with the time until those results come in, but its still a wait.  Its still a time when that river runs in the back of my mind a little more loudly, when my concentration is a bit more lacking and my focus all over the place.  It's not yet a settled time, its not a peaceful time nor will it ever be, I think.

But its a time that I have learned to treasure, to enjoy, as much as the days outside this wait time.  I do see the beauty in the days, I find the fun, the joy, the sadness and the new experiences in these days as much as in the other.  It's just a little bit different.

I have thought for a good while now that Steve's counts have something to do with his stress level..  These past couple of months, I believe, have been a whole lot less stressful for him and I am really inquisitive about these upcoming results. Wouldn't that be great if this really is the case and his counts go down.  I know what that does to my heart, my soul and my ability to see life in more shades of joy.

It's been almost 5 years already since Steven's diagnosis and hard to believe that life has not only moved forward but improved in so many ways.  Just the other day I was talking to a woman and in the conversation mentioned that Steven has leukemia.  Well, her eyes immediately shot wide open, she glanced quickly at him (despite having spoken to him earlier), and whispered deeply in horror 'him???'.  Steven was sitting not far away at all and I saw a small smile form at the edge of his mouth, as he carried on with what he was doing.  I counted my blessings with a smile as I quickly told her to look at how well he looked and how well he has been responding to treatment and it was interesting to see how she relaxed and started asking questions..... it was not long before she started sharing her cancer story about her sister.

She had not been able to talk about it for a long time with anyone as everyone thought that she was 'over' the terrifying times she had gone through with her sister.  Many people do not want to talk about cancer, they don't know how to talk about someone who has died from cancer and 'don't want to open wounds' by 'reminding' people of the tough times.  Sometimes people are even reticent to ask me about Steven's results.....  Don't be afraid to talk about cancer, don't be afraid it will hurt or remind someone of the pain.  Cancer is something that once its in your life, in any way or family member - its there.  No amount of talking about it will make it hurt more, but it sure might make it easier to deal with.  Even though Steven is doing so very well on Gleevec and right now everything is going along very well with him, I absolutely appreciate it when someone asks about him.....  I can only pretend to imagine how it must feel to someone who has lost someone to cancer..... Ask about them, talk about them, laugh and cry with the memories, care enough to take that sometimes scary and confusing step - talk about cancer and the people it changes - you can only help break the loneliness this disease brings with it.

So, even though we wait for the sunshine to break fully through those clouds with another set of great results, the view is still so good and beautiful and I am finding it easier to enjoy this time as the years go by....   This learning, this process of learning how to do things right, how to be there for people we don't even know, to just listen, to be, to just be everything we can be - what a process.

What a way to wait for wonderful results :)

Love and light
Annie

"Giving Anonymously" Appeal

This organization is wonderful and the people that work there are amazing...... even if you cannot help them out with this, please check them out and pass the word along.  There is often someone you want to help, but dont want your relationship cluttered up with financial issues.... use Giving Anonymously. 

Annie

Uniquely precious......

Last week it snowed a snow that our little town has not had in a long time - even more than the Christmas snow they had while we were away.  I don't like the cold, so the 7 inches we got in the front yard, together with the really really cold temps, set my teeth on edge... and then I heard it.  My camera was jumping up and down to get another shot at capturing a snowflake... and so we did.

A few days after that we left for our cruise from Ft Lauderdale, through the Panama Canal to San Diego and I honestly did not even think of cold weather, let alone snowflakes. (Apart from yours, Esther).

It was simply wonderful to be away, Steven was going to keep the shop for us, and he was and is doing very well still, as was everything else in our lives....  So I left with a clear and unleaden heart.  At night, long after everyone had deserted the top deck, I would walk around up there in the crisp, clear night talking to myself and the ocean and enjoying the total lack of people and human sounds.  The bows of the ship, Celebrity Constellation, parted the ocean waves almost effortlessly, creating a swishing, shooshing bow wave that  soothed my soul even further.  All of you were so often in my mind, especially during those lovely quiet walks and thoughts and wishes still swish around on those moonlit waters.

And then we came home again to reality in so many ways.  Tyler passed away soon after we got home and Steven's pcr test is due again next week and the hurt from others that are no longer here was still evident in many different ways in the emails and catch ups I did.

And so the Snowflake came to mind again.  That day I had a black piece of plastic lying outside to catch the snowflakes.  You see, sometimes snow falls in these beautifully shaped, unique flakes but it seems to me that much of the time the snow is just..... well, clumps of uninteresting ice pieces.  Sometimes they are little round balls, sometimes tiny toothpicks and sometimes a scrambled mess - almost indescribable..... but this day there were many perfect flakes floating down on our world. 

I dont think that many people actually look at what type of snow is falling...so I called Steven outside to get a closer look too.... It's like being in a different world when you see all those flakes gently landing on that black plastic.  Its quite incredible to think that something as beautiful and special as this snow flake was made and then survived the fall to earth to land right there at the tip of my lens.  I find myself becoming totally involved in hunting the next beauty and I even forget to be cold at times.

If the temperature changes just a very little bit, that beautiful flake would not form at all.  Just a degree or two makes a difference between the creation of something stunninly beautiful, or not.  I dont know what the temperature it has to be to create this perfection, but I do know that when the tiniest thing changes, that flake stops being.  Just stops.  If I breath too close to it or if I stand in the way that shelters it from the wind, it disappears in the blink of an eye hardly even leaving a tiny puddle.

And this got me thinking on life and just how tenuous it really is.  This leukemia, cml, is formed by something really small in the dna changing and messing up (no technical terms right now), just something so small creates all this mess in our lives.   I wonder just how small the change was that started the ultimate undoing of Tyler and Adrian and ...so many others too. 

I know that there probably is very little chance that we will be able to cure all cancer, or to stop it from getting out of control, and I know that sadly many many more people will not survive their cancers and other illnesses.  And this thought, pictured together with that short lived snowflake, makes it so clear just how important it is to let those you love know it.  Loud and clear.  It makes it clear just how important it is to live our lives 100% every day, to look for the joy, the beauty and the love in as many moments as possible.  All too soon something will change, or the change will tip us into something unstoppable where we cannot enjoy life as we now know it.

And like this snowflake that will now live forever as a photograph, the many people who are no longer with us, will keep living in our souls and in our memories as unforgettable and as beautiful as a once in a lifetime snowflake.  Each one of them uniquely precious forever...

Go hug someone - tell them you love them.  Call them, write them, txt or email them. 

love and light
Annie

A very sad start to the new year.......

Tyler passed away yesterday, the 6th January, 2011

This was not supposed to happen at all...... he was a handsome 44 years young, still newly married, by all accounts a really wonderful person; his wife Mandy is beautiful, vibrant and walked his walk right there with him.  He was supposed to have a full and good life, he was supposed to beat this leukemia.  He was supposed to live, dammit!

I have never met Tyler or Mandy but have followed their story since they first started their blog and because Tyler had the same leukemia as Steven, of course I wanted to find out as much as I could about how he, and also Mandy, dealt with the rocky roads.  Obviously for all the right reasons, I wanted Tyler to beat his cancer, but in addition to that, I wanted his survival to to be a 'win' for us all against cml.  I wanted him to beat it so that I could feel better, be more at ease and add to the hope I have for Steven's long life.  Selfish, yes, but  thats the way it is.

We had just returned back home from vacation when I read the news and it was literally like a kick in my stomach.  I kept going back to their blog to make sure it was true - and that photo of them both, so full of life, love and happiness greeted me every time and made the world a bit brighter, until the words below came into focus.

Tyler obviously touched so many people in his life and was clearly loved by a bunch of people, and he will be tremendously missed.  My heart breaks for all those who knew him and have now lost him.  It just does not seem right at all.

It's at times like this that I get really really angry, sad, scared and angry again all rolled up into one ball.  Obviously I don't feel the grief the same as those that knew and loved him, but his passing definitely has an effect on my life.  It makes it a bit rockier, makes it a bit more precious, makes my life a bit poorer and  at the same time it somehow enriches it.  And right now I feel very selfish in describing how Tyler's dying affects my life in the face of their hurt, but its true.  Even not knowing him at all, he has made an impact on my life and it has been a good impact.

I am deeply sorry that Tyler's life ended so soon and I send my deep and sincere condolences and love to Mandy and all his friends and family.

Tyler..... I hope you have that beautiful smile brightening your face and the twinkle in your eye lighting your way.

With love and deep sadness

Annie

Thoughts and thanks....

As we head out on our first cruise.. so many thoughts fly through my head.  Many of them literally fly through and are gone, or just dont come back when I want to write them down.... but here is one that has really got me thinking.  The lady who wrote this latest blog  http://www.caringbridge.org/visit/ryanpatrick, Amy, is mom to a wonderful boy Ryan who is no longer with them and she shares her feelings and thoughts.  When you read this latest post of hers, go down to about halfway - well, read it all.  But the part where she describes how she, and we all are,  literally a heartbeat away from the other side is just beautiful.  It puts a different perspective on a good many things for me, makes me think and wonder and brings peace too.  Amy has a really lovely way of writing that makes one wonder how come you did not think that way yourself, she can take you from tears to understanding in just a paragraph...

Another thought........  Someone said something just the other day that got me thinking about how fortunate I am to have so many wonderful people in my life these days.  Being mom to Steven, who is doing well and slaving hard in the shop while we are away, is pretty much like sitting on the sidelines, but getting the best of it all.  So many people have come into my life since Steven's diagnosis, all of them enriching it in more way than I could have imagined.  I have cried many times over the death of someone who tried hard to keep living, cried at the changes that those losses bring and grown with each and every step along the way.

My life is rich and full because of my friends, "my People" who enable me to be all I can be, who allow me into their lives, their worries, fears and tears, laughter and joys.

 It sits on me heavily when somone I had been talking to or who's blog I had been following, dies.  It really scares me but at the same time it helps me see the beauty in almost everything in life.  It makes me appreciate and treasure everything so much more.  I have become much more patient, much more understanding along this road ...... and I like it.

I am sure that I will still say the wrong thing at times to someone, offer the wrong advice, ask a question that is out of place or something, but this is so much better, this being able to at least talk to people going through these tough times, than being the way I was.  I was scared to say anything - had no idea what was right or wrong to say or do.  Now I know that sometimes a hug says it all.... sometimes even a stupid question or comment (sometimes!) is better than changing the subject away from their loss or ignoring it.

I can hear myself rambling on now, and I am becoming less clear by the minute about what I want to say...... so here it is in a nutshell...........  To everyone who reads this blog, who emails me, who has welcomed me into their lives through some or other battle with illness..... THANK YOU!  I treasure each and every one of you more than you know.... from those who were there right after diagnosis, on the boards and holding my hand for me, to those who share their wonderful happenings these days with almost no hint of cml.... thank you, you have done so much for me - even though I am "on the sidelines"..

Here's wishing each one of you the smell of a rose, the joy of a belly laugh, the feel of a full tummy and the ability to reach out and hug someone..... and may the new year bring you all a huge dollop of love, laughter and peace.

love and light
Annie

Christmas and things......

These past couple of weeks I have been thinking about what to write about, how to write about CML when, frankly, Steven is doing so very well.  His last results were much better than I hoped for and he seems to be moving on with his life despite everything cml related.  I get to see him almost every day these days, and I think this has tempered my 'worry gene' and I can clearly see that I can let it go a little bit more. Not totally, but a little bit more.

I don't believe that I will ever not worry about this disease in Steven.  I don't believe that I will ever become totally at ease, nor will I believe that there is no chance that it could all go bad.....   But I am not going to waste the days, weeks, years we have on worry... I am not going to pull that cloud of worry over my head when I could rather enjoy the sunshine while its here..  If it rains, if Steven's cml wakes up and wants to create more horrible days and worries, well then we will deal with it.  If it happens.  But for now.  Its not.

Everything seems to be going along really well.  And, as I do in my job, which is fixing and building computers, I try always to acknowledge that I really don't have the power over much at all.  I fix a computer and it *should* work well for a long time;  I say that we *should or might* be able to finish the job in one day;  I say that the antivirus program *should* pick up most of the viruses.  I have learned not to be absolutely sure about something I have no control over.

Today I was reminded again about something that has become important to me..... Christmas Trees.  They are indeed a lot of work, they take a good while to put up, to make them just right, decorate with balance and care, the placing of the lights just right and the star on top.... all of it - it takes time.  But its all for only a little while -maybe two weeks, right?  Like I used to do, some gripe about the job of putting up that tree - the time it takes and all.

Today I spoke to Lottie who is away from home during a drug trial for a new drug that sounds incredibly promising for cml-ers.  She and her husband don't know when they will be home again - they have been away a month already.... She told me of a 12 year old at MD Anderson Hospital who now has AML for the third time!  Yup - third time.  Not sure whether she will be home for Christmas either.  Then there is Tyler and Mandy who are going to be back and forth between hospital and home during the Christmas week.  These are just three people that I can think of right now....  Three families that will not be putting up a Christmas tree with the peace we can because, well, they are not home to do so because of cancer, and stuff totally out of their control.  There are thousands of families like these.... thousands....

So here's my challenge to you ........ put up your Christmas Tree with someone else in mind.  Hang a good number of the baubles,  pieces of tinsel, decorations and many light with the thought of someone who would give anything to be able to do just that.  And then hang the rest with thankfulness that you can do exactly what you are doing.

And then when cleanup time comes, the time when the prettiness goes away and its time to 'get back to normal' and a new year, send a thought out there to those who can not do that..... to those who no longer have 'normal' in their lives.  And be grateful that you can do that - because that means that you have at least some 'normal' in your life.

I remember so well when Steven was first diagnosed..... everything remotely normal disappeared.  People spoke quietly around me, normal gripes and complaints were no longer shared with me, jokes were kept far away - oh I missed normal SO badly - life even smelled different!  So, be 'normal' around someone who is having a rough time this Christmas.... I know its difficult to know what to do, how to act, what to say.... but just be you.  It will help.

One of the sad things about cancer is that everything does change with a diagnosis - the world gets a different hue, taste and feel.  The ground feels unstable and its easy to get lost.  We are extremely lucky that Steven is doing well, that he is with us still.  It could so easily have been so different.  I could be in that horrible new world of moms who have lost their children.  Two wonderful ladies that I know no longer have their sons to hug and nothing can make it right for them.  Before Steven's diagnosis, I never really thought much about losing a child of mine, but the loss of both Adrian and Nick from the same disease that Steven has, has kept me in a mode of deep thankfulness, as well as a state of humbleness.  And hope.

And with that in mind, I am going to post this link again...... the National CML Society.  A bit about who they are :  The National CML Society was created by and for patients and their families in order to provide a centralized hub of information for this rare form of leukemia.

Founded in 2007 as Carolyn's Hope, this organization quickly spread beyond the confines of a local work to address the real concerns faced by the CML community nationwide.  In December 2009, the organization became The National CML Society (NCMLS), serving the needs of the CML community in the United States and its Territories.

This Society, and Greg, is doing an incredible job and have some really fantastic information and links on their site.  Here is a link to some of the video's they have posted - real people living with cml... When I watched them again the other night I found myself bawling when Erin was describing how right after her diagnosis, she went to a public phone and called her mom, saying the word 'leukemia' for the first time...  It still makes me want to choke up.  

And here is another blog, PatientPower, that is so filled with information of all sorts about all sorts of cancers and health issues.  I have been meaning to go to Andrew's blog for a long time now, but only just got around to it today - and I got lost in all the really interesting information..  

All this really makes it clear that none of us are alone in this at all.....

So...... with a huge dose of thankfulness for everything and everyone in my life, I wish you all a wonder filled Christmas Season.  I hope you find some peace, a smile, a laugh and the love thats out there.

Love and light

Annie

The beautiful dance...

When looking for photos to go on this blog, I found myself looking for something like dancing, the sky, happy..... and then I found this one I took of the dancing lights, Aurora Boreallis,  in 2006 in Northern Canada.  I remember so well the feeling of incredible awe, of smallness and utter joy and peace, all rolled into one huge and wonderful feeling..... and it fits so well when seeing Steven's results this time - 0.025% on the International Scale.  :)

There is a chart to the right of this writing that gives his other readings, and after looking at these a good many times over the past few days, I realize that I will just have to get used to the bouncing around...  There is almost a pattern in that itself.

I am very interested to see the next one - this because I think I have seen a pattern in Steven's results..... when he is more stressed, the pcr is higher.  I have no hard and fast proof of this, because of course stress changes by the hour sometimes - but generally I think I see something there.  I will be watching.

The past month has been very sad with the loss of David Cox and also Ryan Patrick.  Without 'claiming' either of these people, it feels as if I have lost a little bit of something at these losses.  I know that life includes dying right along with living, the happy and sad and all that..... but those thoughts don't help when it smacks one in the face.  It just sucks that two more people are no longer here and that there are a whole bunch more people grieving for them.

It makes me even more grateful for everything I have in life....... every little thing, no matter what it is.

I really am one very lucky mom...... its getting hard to update the blog!  This means, of course, that Steven is doing well, that my mind is not even closely centered on cml on an hour to hour basis...  And this makes me smile.

Today I looked at Steven while he was busy doing something, and I wondered when it changed. When had I started just seeing Steven without the RobotCop Scan going, without trying to see beneath his skin and count the leukemia cells one by one, without looking at him with that thin cml barrier between us?

It was wonderful..... it was not long ago at all that I never thought that would be possible..... but here I am today and its yet another new truth.  Obviously cml is still an issue, but thats just it - it's a well controlled issue that is in a really good place and not by far any more even a big chunk of my kid!

Today was another really great day.

love and light
Annie

27 years......

Twenty seven years ago today was a totally magical, amazing day for me.  It was an experience like none other and the special-ness of that day has not diminished at all, if anything, its grown.

Today was Steven's 27th birthday and as I looked at my three children together, celebrating not only his birthday, but Laura's last week and Frank's next week, I realized again how incredibly fortunate and blessed I am to be mom to these really lovely people.

I have loved being their mom every single day - even those days that I just wanted to fly away for a few hours.... :)

Steven, your birth was the most incredible thing that had ever happened to me.  I looked at your little face and absolutely fell in love.  You looked a bit like a combination of ET and my dad, were so sweet and perfect and soon you got your own look and left ET far behind.  You quickly and easily grew into a happy little boy, through the relatively easy teen years and into the wonderful man you now are.  There has not been a day that I have not been proud of you, not a day that I have not felt incredibly fortunate to have the privilege of having you as my son.

Happy birthday, Steven, I love you.

Totally off topic........ but....

Totally amazing!


Homemade Spacecraft from Luke Geissbuhler on Vimeo.

The National CML Society

Every now and again, one finds a story..... a story that stands out above many others. And so here is my new favorite one..... The National CML Society. This CML 'thing' is a long long road, sometimes with huge mountains and howling winds, but its definitely made easier by people like Greg.

This organization is one of the reasons that I can sit back on my duff and not be a freaky mama.... It's helping keep me informed of many aspects of CML of the latest treatments and information......all in one easy to find, read and understand, place.

A huge thank you to Greg and his family who started this all and to all that have got this up and running. So, here it is, in Greg's own words.........

Here's our story and how the NCMLS (a.k.a. Carolyn's Hope) came into existence.

In late December of 2004, our family was shocked to learn that my mom, Carolyn, had been diagnosed with breast cancer. This diagnosis came on Monday, December 27th during a follow-up appointment to review recent mammography and biopsy reports. Needless to say, it floored us. With the New Year's holiday only hours away, she was instructed to return on January 4th for surgery. Over the long weekend, we began to realize that our resolution for 2005 was to beat cancer. Little did we know that the following Tuesday, a CML diagnosis would come.

Following a radical, double mastectomy and chemo, she began taking Gleevec (800mg). Over the Gleevec journey she experienced severe side effects and was unable to achieve a cytogenetic response. Yes, folks, contrary to what some may say it DOES happen. Over the next 18 months she continued, diligently to take varying dosages of Gleevec to no avail. Sprycel was on the forefront and soon to be out of trial so the plan was to get into the trial and/or begin as soon as it was FDA approved. In October of 2006, she was still in chronic phase with still having a sub-optimal response. The plan was to begin Dasatinib at the next appointment in early January.

Christmas 2006 came with all its glory. Christmases in the Stephens' home were magical. Mom was the perfect hostess and everything ran so smoothly (she accomplished this ALL while working full time as a Human Resources executive for a large national company). The day after Christmas, she ran by her general practitioner's office for an unrelated matter. He asked some general questions and something caused him to do some quick blood work. It was then that she discovered that she had gone into blast. I remember the phone ringing and her saying "I'm in blast".

She was admitted later that day and the BMA revealed a 69% blast ratio. She immediately began Sprycel which returned her to chronic phase within days. Unfortunately, at the 10 week mark, the drug failed. At that point she entered the AMN 107 trial in Houston. Again, the drug returned her to chronic phase but it was short lived.

On July 28th, 2007 at 4:32 p.m central time, with my brother holding her left hand, I holding her right, and my dad stroking her forehead, Carolyn M. Stephens, wife, mother, Mema, and friend, died of CML. She had worked the previous week, enjoyed a birthday party for my nephew, and unknowingly lived her last days surrounded by those she loved most.

On August 3rd, only two days following her funeral, I knew that our journey was not over. You see, the journey never ends for a CML family, regardless of what happens. I am living a CML journey today because CML has forever impacted my life, the life of my family and our friends.

I, along with my father and brother, decided then and there that we would do all we could to ensure that others facing a CML journey had the information, access to specialists, ability to connect with others, and resources to help with the huge financial drain a CML diagnosis can bring about. Thus Carolyn's Hope was born. The organization was dedicated to her memory and we honestly thought we would simply talk with a couple of local families and help where we could. As time passed, two families, became four, four became 20, 20 became many, many more.

Over the past three years, I have witnessed this small work blossom into a beautiful thing that is bigger than any one person.

As we continued to grow, we realized the need to rebrand so that others facing the journey could readily find us. After talking with our board, medical advisors, and patient advisors, it was decided that we would take on a name that would better identify the work. As you know, another organization in Canada was already named The CML Society (of Canada). At that time, I approached Cheryl Anne Simoneau to ask if the organization would oppose Carolyn's Hope adopting the name "The National CML Society". After their board met, they graciously agreed and the decision was made to rename Carolyn's Hope.

The work is NOT a part of the CML Society of Canada, nor or we a subsidiary. We DO talk with the CMLSC often and have attended many of the same events, as have others on this site. The NCMLS a.k.a. Carolyn's Hope is a completely separate entity with a different charter, different leadership, and different yet similar services.

Today, The National CML Society a.k.a. Carolyn's Hope, is a rapidly growing organization dedicated to the ground based issues faced by those living with CML. They are as varied as dealing with side effects, to finding lodging in a strange city. We have quite a few new and unique services that are about to be made public. These services are unlike any available in the CML community today. It is our prayer that anyone facing a CML diagnosis will benefit from
these services.

I don't know your spiritual beliefs, but I can stand boldly today and say that God has directed this work and has opened doors beyond imagination.

We work with, and collaborate with a variety of organizations. That list includes;
the Lance Armstrong Foundation;
the I'm Too Young for This Foundation;
the International CML Foundation;
the Max Foundation;
the CML Society of Canada;
the Leukemia and Lymphoma Society (of which we are a referral agency – we aren't funded by them either);
Navigating Cancer, and others.

I choose to devote my time and energy solely to helping where I can, standing in the gap for those in need, and joining arm in arm as we ALL continue the journey that may one day lead to a cure.

My heart and priorities are in order and my family and I wish to contribute in whatever way we can. This is about LIVING with CML and living life ABUNDANTLY.

Our medical advisors are:
Dr. Michael Mauro, OHSU, Portland Oregon;
Dr. Jorge Cortes, M.D. Anderson, Houston, Texas;
Dr. Moshe Talpaz, Univ of Michigan Ann Arbor; and
Dr. Neil Shah, Univ of California, San Francisco.

Our Patient Advisors are:
Barb Stanley, Arizona
Beth Hodges, Georgia
Cindy Langley, North Carolina
Glenn Davis, Michigan
Jerry Mayfield, Illinois; and
Lee Spiva, Florida.

Over the course of the next few weeks you will see many changes. ALL of which have originated within Carolyn's Hope/The National CML Society.

We invite you to stay tuned. Please do not hesitate to contact me if I may answer any questions or if you'd just like to say hello.

My best to EACH and EVERY one of you!

Here for a Purpose!
Greg Stephens

Executive Director; Founder
http://www.nationalcmlsociety.org/
31 Inverness Plaza #307
Birmingham, Alabama 35242
877-431-2573
gstephens@nationalcmlsociety.org

a thought....

does the person create the journey - or does the journey create the person 

 

Cruising on with life........

And so those intense feelings were pushed into the back of my mind again, becoming the rocks in that ever flowing stream that tinkles in the back of my mind and I am able to think and plan the good things in life again.

About a week ago, Steven and Laura came around for dinner and they both came in the door fuming.... I mean FUMING!  Uh oh........  They had gone to pick up Steven's Gleevec from the Walgreens down the road.... He has a standing, automatic prescription reorder with them which should ensure that his meds get there on time. Well, that did not happen and it lit fuses in both Laura and Steven.  Steven had tried to pick his Gleevec up earlier before to ensure that there would not be days that he does not have any, but the pharmacy said they could not allow that because of the type of medication Gleevec is.  So he has had to go on the last day of his current supply or the day that he has run out........ this leaves it wide open to issues like this.  The chappie at the pharmacy also did not have the right attitude and after both Steven and Laura telling him how absolutely important it is that he takes his cancer meds..... the guy shrugged his shoulder and said that it 'should be' in the next day.

Laura immediately had the prescription transferred and they were able to pick up the Gleevec the next evening from the new place.  The old pharmacy only got it in by Friday which was five days after it should have been there!!  This really made me angry and although I know that its important not to miss a day of Gleevec, its not absolutely critical in Steven's case - but it could be for someone else, it could even change things with Steven.  Who knows......

The best thing that came out of this experience?  Seeing just how angry Steven and Laura were about it - how upset, angry and concerned...... I have to admit that that was pure music to my ears.  :)  It just totally confirmed for me what I have known all along - they are both very serious about dealing with cml in a very serious and vigilant manner.  Just lovely.

Apart from that, well, for me even including that experience everything has been very quiet and peaceful for the past weeks.  This blog calls at me from the recesses of my mind but nothing big enough to sit down and write, not until they kind of pile up a little.  Lea mentioned the other day that when my three 'kids' are doing well, then I start dreaming of a vacation again and when they are a little unsettled in whatever part of their lives, well then the travel bug goes into hibernation..... So, yes, we have another vacation planned!  

This time we are heading out from Ft Lauderdale on a Cruise through the Panama Canal to San Diego where a very special friend of mine lives.  Hi Esther :)  We have a few days before and after the cruise to visit and explore in both Ft Lauderdale and San Diego.  Its going to be absolutely fantastic to sit on the balcony and watch the ocean for days on end and also to see a good many new places.  

And coupled with that is yet another piece of good news..... Steven will be hanging around the shop a whole lot more in the very near future as he has decided to go back to college next semester..  So he will learn what he can from us about computers and then get back to the books for a while..... This means that while we are away, we will not have to close the shop down as we normally do.  We know that he can handle being there on his own and that will probably help him a ton, to be there without our being there.  All good.

Just a few days ago, the subject of having a favorite child came up.  I know all us mom's deny having one of those, and even if we did favor one kid above the others, hell would freeze over before we come anywhere close to admitting it.  But it got me thinking...... do I have a favored child?  Well, yes.  Yes I do.  It's whichever one is dealing with life by being fair, being all they can be,  being honest good citizens and looking out for the others in their life..... And thats all three of them!  I have three favorite kids!!  Now that being said, and having to be honest in writing this, seeing as I opened the subject, I have to say that I am more concerned with Steven. Or is that 'for' Steven, or "about" Steven.  I don't know, but what I do know is that this cml has tied me a bit tighter to him than my girls.  

If either Joleen or Lisa mention and problem - yes, even like a toothache! - I can give advice or sympathize with them with a clear heart and mind.  If Steven mentions the same situation, well then I wonder a bit more deeply, I tend to go around in my mind wondering if its something tied to cml and not just the normal run of the mill toothache or whatever and then yes, I am a bit more gentle, more concerned, more wrapped up in whatever is going on with him, and I check back with him more often than I would with the girls.  It makes me a little more nuts.  And so at times this is construed as Steven being my 'favored child'.  Is this what it means?   I don't want a favorite child - I already have three!

When the kids were small my favorite kid would be the one that was not creating havoc at that very moment, and for a good many years, that changed by the minute....  This is something else entirely I think.  This 'favoritism' is in a sphere all of its own and I think its unfair to be critical of a mom who feels this way.  I often think of the mom's who have lost children and how many people then advise them about how much the other children need them.... As if that mom would not know, as if she was not doing her best......  Sometimes being tied tighter to one child than the other brings a whole new dimension to life......an unwanted one, especially in really tough times.

To end this on a more gentle note, some beauty and a good sign - I have my camera going again :)
love, light and laughter.
Annie 

Long overdue PCR update

For a good many different reasons, I have just not had the oomph to write anything on here, not even the latest pcr results.  I think disappointment was the main factor, a touch of being angry, some...... no, a lot of frustration and just general tiredness.

For a while now the pcr had been cruising around the same level, then it did that beautiful downward dip....... and then these latest results.  The latest reading is 0.10% on the International Scale.  And then I looked again at the past results and see that I had been way too complacent....... I misread the April reading - it should be 0.040% IS, not the 0.015% as I had listed.  That was on the old scale....

So when I had thought that there were two jumps downwards towards PCRU, instead there was one lovely jump down and then the little hop upwards again in April......... followed by this jump even further upwards.  I know - it puts Steven at around the same as he was a year ago, but ooooooooooooh, I had such high hopes that he was on his way to that string of solid zero's.

So now we wait again until the next test and see which direction that goes in.  Hopefully it settles down, or even goes down.  Oh I know this is nothing dramatic, probably just a normal bouncing around as these pcr's do and that there are people who are in a much much worse place, but still.  This last result was like a kick in the gut and I battled to process it in a reasonable way.  I didn't go nuts, didn't bite my nails but this time that jump got me on a level that just made me tired, made me really quiet on a deeper level than for a long time.  Strange.

Maybe it was also a combination of remembering two very special young men.  Nick left this world just over a year ago now......  He was a beautiful young man about Steven's age, just starting out in life.  And Adrian, also around Steven's age - two years already!  It hardly seems possible and it is definitely not fair - not in either of these cases or the many many others that this happens to.  Both these young men and their moms had such a positive influence on my life and still do in so many ways..

Sometimes I get really scared...... yes, we can say that we are all going to die one day, that some or other mad bus driver will drive over us or someone else we love...... but it is also true that Steven has an extra 'strike' against him..... that he is a tad more vulnerable than the average Joe with just the bus driver to worry about.... and this scares me into a less bright place sometimes.  I know that I am so fortunate to still have Steven here and that, even with this pcr jump, he is in a good place with his cml.... so how can I worry still? Why?

Love and light
Annie

Something wonderful.....

A few months ago I started noticing this organization and did some reading up on them.  What a wonderful idea!  Click on the picture to go to their site and see for yourself, but I am going to tell you a little bit about them anyway.

This is an idea that I seriously wish I had thought of first - one that makes me smile every time I think of them or see their name.  What do they do?  You know how sometimes you want to help someone out but you know that its going to mess with your friendship or relationship or just the ease you have with each other, if you try to give them some financial help?  Well,  this company will send that money to them and not let on that its you that sent it.  Yes........ Giving Anonymously!  And when the person gets their gift, they are given a phone number to call where they can thank you (still anonymous) and let you know that they have received your gift. 

I have read their website and the news reports and all and they sound like an incredible group of people!  In a world half crazy, I think this is one of the nicest things I have read about in a very long time..

So - click on the picture above, go and read all about it and if you know anyone that can do with a lovely surprise - go for it!  And then spread the word..... let others know how they can make a difference in a lovely way and make someone else smile a bit longer.

Here is some of what they stand for:  

The Passion

Our goal is to enable and encourage you to be your own charity, and for you to give anonymously to those around you in need.

Sure, you could give money to us and expect us to find those in need. But then your neighbor who lost his job and now can't pay the bills or adequately feed his family, will not be helped.

Our Motto: We are not the 'charity' you are! Look around your community, your neighbors, friends and family. Do you see anyone in need? If so, give to them. You can give anonymously. We'll send them a check, and you'll get an email with a voice file of them thanking you. But they won't know who you are! How cool is this!

Go and visit the site and pass the passion forward - start something :)

Love and light

Annie

Needed - a big strong tree!

I feel that things are going so well with Steven that keeping this blog updated is almost......... well, pointless.  But then I have recently read a few blogs that were 'closed' and within a short period of time - boom - everything gets turned upside down and more than enough reason is suddenly back to start up the blog full time.  So........ no shut downs happening with this blog!  Besides, I have so much stuff whirring through my mind and especially this last month, I have had trouble trying to sort through it, the importance of my thoughts and the need to even write it down.  But I know me - in order to help me deal with it - I need to write it down.  Get it out.

So here are some of the things that have been swirling between my ears and around my heart........Firstly, the blogs of two people I had been following and had not looked at for a good long time because they were doing great - well, now they are back again.  Oh how I HATE that!  Just how does one go through all that again.... Both these people had a transplant and now they know what is ahead of them in dealing with this all.  Again.

I recently read the entire blog of a lady who was diagnosed just over a year ago..... when I got half way through her blog, I had to go back and check to see just when she was diagnosed as so much has gone wrong, so many different things thrown in her path of recovery.... it was like a never ending nightmare.....  Just a year, with so much she has to deal with - and its not nearly over either!

And then something on tv caught my attention - the number of people who die per day in car wrecks, from cancer and then the grand total...  Did you know that 116 people die from car wrecks each and every day!!  Thats 116 families that are devastated per day - at the very least.... 116 people that will be missed, cried over, who's death will leave a never ending hole in so many lives - per day.  And almost every one of those deaths was born from a conscious decision of someone in the chain of events.... whether it was to drive too fast, too tired, too drunk, too angry, texting, talking, crying and much more........ 5 deaths per minute.  And tomorrow it starts all over again.

So I started looking, yeah yeah, I did...... I started looking at the number of people who get diagnosed with cancer and the numbers that die from it.  And thats where I stopped.  That number was too big and there was no way that I was going to go too far down that road.  A couple of nights ago there was a fascinating program on tv about "Toxic Towns" - boy did that get my blood boiling right before bedtime!  It was about the towns living on the sidelines of big companies that have toxic waste in various forms.  Of course all the companies state categorically that there is no way that their toxins have any effect on anyone..... one company even said that even though they did have leaks of toxic gasses into the air - none of it crosses the fence line!  WHAT??

And so I have had a few days that have been a tad 'low'.... I have found myself quiet, too quiet and sad.  Sad, but also seeing that despite all of this negativity, despite all the devastation - there are people working so hard to help, to make things better, easier, nicer and giving more hope for dealing with cancers.  I found the video below on the blog of someone else who is doing well - I see that it was first posted just over a year ago, but its fascinating!  A positive - a big positive.  Read the comments below it too... they are great.

Is all this because its PCR test time again?  Sheesh, I hope not!  I want to be over all this worry.  I want to know deeeeep in my bones that Stevens test results will only get better, I want to know that we will not be in that crowd of people dealing with those horrible, awful re-diagnosis days.  And I thought I had it down pat.  No nail-biting.  Yes, I did notice the kit in the refrigerator, I did feel the hours creeping by as test day came closer and when I got the email that confirmed that my eldest child's blood was in the lab in Oregon, I sent a huge truck load of fairy dust that way in the hope of another great test result.  Sigh.

I know that I have nothing to moan and groan about....... I know that, especially in light of all the people I read about that really do have reason to moan and groan and be seriously ticked off at cancer and the hand they are being dealt.  But if this is how I get when its not even me with the cancer, I cannot begin to imagine how it must be to have cancer and then have to deal with the wait and the frustration and everything else too.

And Steven's doctor........ Dr S.  I have hesitated at writing about this because I find it so .......well, incredible.  On Steven's previous visit, Dr S wanted Steven to change labs - to have his PCR done at a local lab, one that does not do the test on the International Scale.  When Steven asked why - the answer was "so that the results can be more easily understood/read", or very similar words.  Steven said that no, he would just keep doing it the way its being done - sent off to OHSU, which we have been doing for about two years now and which is the way I like/want and organized it to be.  Doc S then asked whether Steven was not old enough to make up his own mind and not just do as I (me, mom, Annie) wanted it to be done!  Is this just us or is this not incredibly insulting, demeaning, distasteful and a host of other things?

I really am not sure what to do about this - if anything....  Steven says he will wait and see what happens at his next appointment in a couple of weeks time, and we will go from there, but that the test will keep going to OHSU.  But now we know - if the pcr even starts heading upwards, a new doc will be found.  And yes, I am already looking.  This is just not good enough!.  Steven knows without a doubt that I will only recommend the very best way to do anything relating to his treatment...... why is it so hard to find a doctor who would take the same care of my son?? Where are they all?

And so.... this is why the Strong Umbrella Tree picture of today..... I feel like sitting under that tree, protected from the worst of everything (as well as bird droppings!) and just being allowed to contemplate all the good things, the good people in life, and all the good and stable results coming back to many people as well

Here is that video by Daniel Kraft of a new technique for getting bone marrow donation.....I am in awe of people to work so hard to make things better.

Love and light
Annie
ps - my Netflix queue has been updated to only good, happy and funny movies for the next month!

A Donor's Story

In my opinion, anyone who becomes a marrow Donor is an awesome person.  These are people who give of themselves and purposely, with thought and intent, make a huge effort to save someones life.   Jenny became her sister's donor and has since opened a website to encourage people in their cancer journey and also to try to get more people to sign up on the marrow registry....  Please go and visit her site (here) and talk to someone about joining today..  What an experience it must be to save a life!

Thanks, Jenny, for what you did - your story inspires and gives hope to so many!  And thanks for doing even more and spreading the word about becoming a donor - who knows, maybe one day your work will be the link to another life saved!

Here is Jenny's story..........

My name is Jenny Motta and I used to believe that if you had the will to live then you would, but now I know the reality...  The reality is there are thousands of people with the best will to live that are dying.  The people I'm referring to need a Bone Marrow/Stem Cell Transplant, without one, they will die.  

       

What if I told you that you could be their only chance at life?  And you wouldn't have to give up anything that your body wouldn't make back naturally.  Sounds too good to be true?  Well it is true, ya see I'm speaking from experience.  I literally saved someone with cancers life, and I didn't have to give up an organ or a piece of bone, or anything else my body would ever need again. 

      

It seems these days that everyone knows, or has known someone with cancer or another type of life threatening disease...  We may not have found the cure for all of them yet, but we have found the cure for 80 different  diseases, and that is a Bone Marrow/Stem Cell Transplant. 

  

                                                     This Is My Story

     Nine years ago my younger sister was diagnosed with Chronic Melogenous Leukemia.  Three weeks later we found out that I was what the doctors called a perfect match.  We flew from Alaska to Seattle to the Fred Hutchinson Cancer Care Alliance.  I went through some basic test to make sure I was healthy enough to be a donor.  The doctors then gave me the option to donate stem cells or bone marrow.  These are basically the same thing (blood cells) the difference is how they extract the cells from your body.  

They explained to me that the Stem Cell Transplant which is also called peripheral donation is done by a procedure called apheresis.  With this procedure the doctors would give me (the donor) one shot a day of growth hormones for four to five days, this is so the donated stem cells are easily accessible from my veins.  Then the doctors would insert a needle in both arms.  They take the cells out of one arm and run it through a machine that filters out only the cells that the patient will need, then they return the unneeded cells back to me (donor) in the other arm.  

The second option they gave me was a Bone Marrow Transplant.  For this procedure they would put me under anesthesia and go through the back side of my pelvis (my lower back) with a needle to get out the needed bone marrow (the blood cells in my pelvis) I feel the name of this is procedure can be very deceiving.  I need to make it clear they do not take bone, only blood cells.  I should also note that I don't know if every donor will have the option for which procedure they will donate.  I personally don't care much for needles so I chose to go with the Bone Marrow Transplant and be put under anesthesia.  The procedure took about two hours, they extracted two units of marrow.  I was sore for about two weeks, not that bad.  Not bad at all considering that the small amount of effort I went through saved someone's life.

  

   July 18, 2010 was the nine year mark since I saved my sisters life.  I would do it again in a heart beat for anyone.  Reading this you may think the thought of being chosen as a donor would be a scary thing to go through.  Well to that I say, "it's no walk in the park," but please take a moment to think about what it would feel like to have a doctor tell you that you would die unless someone else was willing to donate to you.  Every day thousands of people all around the world are faced with just that.  

  One last thing I would like to make clear, just because you register to donate (which is only four swabs from the inside of your cheeks, and the packet is mailed to your home) doesn't mean that you will donate.  It only means that you are put in data base with millions of other people that are willing to donate . 

                                                   Please register to donate.  

                                                        Register Here