Happy Thanksgiving

To everyone in my life - you are all special, beautiful and unique - like the ice crystals on this leaf.  Each of you is a part of my life and without you, my life would be emptier. Thank you!

love and light

Annie

Freaky face...

Today I was playing around with the camera again and took this pic of a little critter my sis, Kate, gave me a long time ago.  I laughed.  I bet I look like this around test time!  

just because...... :)

McKenzie Rose.......... she's so cute! :)

Fire Trees!

Oh today was awesome......the sun was shining and it lit up the trees in an incredible way - fire trees!  So I took Number One Doglet and my camera and walked down the road to get some photos again.  I really feel myself coming alive when I see the world through the lens.  So many things some to mind - comparisons between real life and the life we are living in worry and tests and happiness and sadness.  When I put the pics on my computer and zoom in, its easy to see that life in itself is a miracle and that its all important to enjoy the minute - like the dew drops on a spiderweb, they will soon be gone.....

No matter what - the trees will glow like this for as long as the earth breathes....... here are a few and some more on this site:  lens2life.blogspot.com.

And  I had both Steven and Lisa in the shop today, with Joleen very much in mind....

Ok - here are some photos of today

Love and light

Annie

Join the Marrow Registry for FREE in Nov.

Join the Marrow Registry for FREE in Nov.

November is National Marrow Awareness Month. Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

This is your chance to join for FREE. What are you waiting for?

Join online for free while funding remains.

It's easy to join:
1.  Confirm you meet basic donor guidelines.
2.  Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
3.  Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

NOTE: When filling out the application, it will ask you for a credit card number and it will still mention the $52 fee normally charged. Ignore the $52 fee and don't enter any credit card information. On the final page it will show a $52 fee and a $52 coupon making your total $0.

JOIN BY CLICKING HERE

For more info on what joining is all about, CLICK HERE!

a bit more.......

I was just sitting here for a few minutes before going to end the day....and I realized that I am smiling again. It's like a reprieve from something truly horrible, this getting those results! Even if they are not perfect or with numbers or anything - at least they tell me that my son will be ok for a while longer at least. There is no way to fully describe this feeling, it's too deep, too meaningful.

The difference in me is difficult to grasp - even after just minutes of seeing the results. It's in the way the moisture that jumped to my eyes in relief, dried before they became tears, it's in finding that relaxed smile or realizing just how many muscles were clenched and tense in anticipation. It's in how I looked around the room wanting to reach for my camera again - first time in days and in the lovely feeling that I see me again - well apart from my mom in the morning mirror!

Whatever it is, I know how incredibly blessed I am in SO many ways.

love and light
Annie
Here are my three chickens and my eldest nephew, 4th chicken (in solid red), many many years ago.   Steven in rear right, Joleen front left and Lisa in blue. All so sweet and cute and happy and healthy! So incredibly blessed we are .......

"The Same" ?

Ok - here it is......

Bcr-abl is detectable, but housekeeping gene level suggests a partially compromised sample such that accurate quantitation is not possible. However, this sample appears to have comparable bcr-abl levels as this patient's sample from 7/17/08.

It's just as the lady on the phone said - "the same" and I am just going to go with that till the next pcr.

The whole day today was unsettled for me.  I knew that there was nothing dramatic in these results, but because I did not know the exact wording, my soul just would not settle down and accept.  I get so tired of feeling like this.  The withdrawn, detached, pre-occupied feeling even when there really are no flags to warn of change, is a lonely place.  I guess its a selfish place too, as I don't let others in when I am there, which is why its lonely there.  I don't want to hear the 'it's going to be ok', or the 'why are you worrying' or  the 'he's fine! Stop worrying!'. I know all these, but I want someone to bash the establishment with me - I want someone to be pissed off and frustrated right along with me - but at the same time, I know absolutely that its not necessary nor is it the wisest route to go.  My online friends have been awesome in giving me exactly the mix I needed and wanted and Frank has been Frank all along, which creates a tremendous grounding for me.

Anyway - right after Steven said that he would drop the 'non-results' off tonight, I felt the frillies leave.  Wonderful!   I know that I worry more than others do, and maybe more than what I should - but this is me and I can only be totally me.  I am much better in the in-between months and really did not even count the weeks till these results came in - it was a pleasant surprise last Friday when I realized that it had been 3 weeks already!  So, I am improving.  It's necessary.

So many things were screaming through my mind today and this evening - so much to write about, all those upside down, inside out feelings......but I cannot grab hold of them now long enough to describe them.  Lovely  :)

It's incredible to think that we are nearly at the end of another year.  They are just screaming by with no consideration for all the things I still want to do.  I see my kids getting older and older and a woman who looks a lot like my mom, seems to be appearing in the mirror in the mornings....  Soon we will be at the three year mark with leukemia in our family and I have to say that I am incredibly, incredibly grateful for the way it has progressed, or rather, NOT progressed.  There are way too many people having a really rough time with this disease......

Special thanks to Lea, Diane and Kay for the hand-holding and flittering you have done, once again, with me during these past few days.  Kay, your description of medical administrators was priceless!  Thanks everyone for the comments you post here, and HockeyChic - I wish I had your email address.  All of you help so much during my frilly times.  Many many thanks.

With a smile

love and light

Annie

Sort of waiting....

I am not sure if we have an answer or not..... 

On Tuesday morning I again called the Onc's office to see if they could pull his chart and get me the numbers..  After talking to yet another 3 ladies, I was once again told that they would call me back.  Again.  So I waited some more.  I know this is a small office that I was talking to, I also know they are busy - but geez!

And when they called, her answer to my question was: "it's the same as last time".

Me:  Ok - so what are the numbers? You know........ the 0.something-or-other numbers.....

Her: There are no numbers - the doctor just wrote that they are the same as last time.

Me: Well, (through very tightly clenched teeth) what does the report SAY?

and so she started reading and I am not sure that my words are correct, but it went something like this..... " the housekeeping gene shows signs of (I think she said) degeneration and therefore no reading could be taken - but it's assumed that it's the same as the last pcr test".

Is it the 1st of April??  I sat there for a few seconds, calculated the days till Steven's next appointment and the importance of getting any frillier - and let it go.  I thanked the lady on the phone and hung up.  It's quite amazing how sweet one can sound when talking through gritted teeth and hanging from the ceiling by one's fingernails, but it's not her fault - she had no idea even what she was reading.

Steven called soon after and said that his appointment was on this Thursday, I had thought it was next Thursday, so it does not make sense to worry about it any more.  This time.

So maybe, maybe tomorrow we will have some answers.  It sounds to me as if another pcr will be taken rather sooner than later and we will see what that one says.  Maybe.  But lets see.  And maybe next time I will not call for those results early.  Maybe.  

The funny thing about worry is that it really makes no difference to the outcome at all, but I have not yet found anyone that can honestly say they don't worry at all - not even a teeny tiny bit.  Lottie said that worry is like a rocking chair - you go backwards and forwards and backwards and forwards, but nowhere else.  This is so true.  

I really don't spend the time between pcr's worrying - its just the last day or three when the results are due.  That's when it hits and the nailbiting starts - the rest of the months pretty much are back to .......well life as it is.  And it's good.  It really, really is.  I know just how fortunate we are that Steven is doing so incredibly well...and I am tremendously grateful.

More tomorrow.

love and light and a hug to Kay

Annie

:)

Angry week

This week I am angry.  I am angry at what this disease in my son does to me.... It's not my illness, obviously, but it invades every part of my life.  I am angry at the feelings it brings to me, the "scareds" it delivers sometimes first thing in the morning before my eyes are even open. I can feel myself much more touchy, much more irritable and aggravated as the days get closer to being able to get Steven's PCR results.  I am angry that this disease can and does royally mess up full days at a time and yes, at times when I think of these words we now all live with - cancer and leukemia - at times it takes me to places I just don't want to be.

Recently, and very sadly, Cam passed away after two transplants to try to whip this disease. I also started reading a blog just last week of a lovely young lady, Erica - and now the news for her is not good at all either.  Others like Tyler and Dawn are also battling so freaking hard against it.  WHAT is going on??

I don't want to think of this disease in any other way than it being 'the good leukemia', or 'easy to control' or 'like diabetes' - but this wait for the quarterly results really blows all those easy thoughts to the wind and leaves me a much less nice person to deal with with many thoughts that I definitely don't want.

I wish that the doctors, nurses or the aids or receptionist or ANYone at the onc's office would realize just what waiting does to one, and in a show of utter kindness and understanding would call people with their results!  Or even just call to say that they are in and ............  Well, you get the idea.  Instead, I am left counting the days since the blood draw, biting my nails while I wonder whether three weeks is enough time to wait before calling the onc's office and being told that I will get a call back, and then more waiting.  I could not handle that on Friday, so I did not even call.  Steven's appointment is only in 2 weeks time and I know the results will be back way before then.  

Can I wait?  If I have to. But do I have to?  AAaaaarrrrrrrrrrgggggggghhhhhh.  At least it's weekend again and I cannot do anything about it till Monday anyway.

Another thing that gets to me is that in this time of worrying about those results, I tend to look for other blogs and stories about cml.  I keep hoping to find happy, successful stories.  I want to hear about others in either Steven's position or mine, that are having raving success with 400mg Gleevec and getting on with their lives.  But sadly, I keep coming up with more and more people struggling to live, having to change meds, dealing with difficult side effects and on and on.

Even the support boards seem to be filled with people moving from one medication to another because of  mutations or lack of response or something.  I don't have any reason to gripe at all - Steven is doing well and  joining in those discussions seems, well, silly in the face of the struggles of others.  So, again - I am left clawing in frilly-ness for happy stories to help me through these waiting days.

I know - I am fortunate.  Steven is looking great and so far Gleevec is doing it's thing........... and now I am off to bed to read till my mind shuts down for the day.

love and light

Annie

Donor Day in words....

Oh boy - where do I start........  Saturday was a day that had an incredible number of different feelings surrounding it way before it started!  By Thursday evening deep disappointment had replaced any nervousness.  I had called everyone on the list of people who had voluntarily signed up and only one guy said he would make it to the drive!  I was so terribly disappointed and sad too that it appeared that the day would be a waste of time.

I read late into the night on Friday so that my mind would not keep on working long after the light went off,  like the night before.  And it worked - I slept better than any baby ever has.....  On Saturday morning the sun literally shone so brightly that it felt as if the light was being forced into my brain.  I smiled and knew it would all be ok, no matter what.  By then I knew that my daughter, Lisa and her husband would be up here and they were both going to join the registry and my sister Kate too - and that already tripled the ‘only one extra person’ idea.

And so the day started on a much better note than the day before.  The Vein Voyager Blood bus arrived at around 11.30am with five very lovely, very capable young ladies with what appeared to be an unlimited supply of smiles and gentleness.  And Alta, the “Marrow Lady”  arrived and set  up her table full of forms, pamphlets and papers inside.

Dawn and Greg from Carolyn’s Hope arrived with Tyler, their six year old son - it was absolutely wonderful to have them as back up all day long!  They both had wanted to get on the Marrow Registry and donate blood and had waited for this drive to do so - awesome :)  A big thanks to both of you for everything - we really appreciate you and I hope that next time we have more time to sit down and chat.

Steven and Laura stopped by in a quiet time and I introduced him to those that were there and all the ladies in the Vein Voyager too.  I wonder just how deeply I embarrass this son of mine at times, but they did not run off quickly and after a while I told them to head out and get on with their day.  He is so good and gentle with me when I get on a roll and 'show him off' - its just lovely.

Right here I must put in a REALLY big Thank You to the ladies of Kays Kastles.  Their premises were perfect for the drive and the atmosphere was all open and sunny and bright.  They helped me on every level they could and were just simply great!

Slowly people trickled in, and the one little dark cloud that thundered by was because my sister Kate was royally ticked off as her iron was too low to donate blood!  But she did sign up on the marrow registry, which sent that cloud back into oblivion.  A good many people who donated blood also signed up on the registry which was double wonderful.  It was absolutely awesome to see people hunched over forms, spending their time and effort to make themselves available to possibly save a life.  

I tried to talk to every one of the new members of the Marrow Registry and tell them how much I appreciate their willingness to help.  All of those that I spoke wished so hard that they would ‘be picked’ to be a donor.  They all said that it would be incredible and an absolute honor.

I had hung a good many photos on the wall.... these were of people who are dealing with cancer in some form or another and sadly two photos were in memory of people who are no longer here with us - Adrian from the UK and Carolyn, Greg’s mother who could not find a match.  Another of the photos was of Dawn, a young lady who needs a marrow donor but has not yet found a match.  When the local tv news guy came up and I told him the stories of those on the wall - he immediately zoned into Dawn’s photo and it was she who got on our local news later that night.  I had written on her photo that she needs a donor.  I so hope and wish that Saturday will help her.

To see a face of someone so young and beautiful, with a sparkle in her eyes and yet fighting such a tough battle really put meaning into the drive.  I know what I saw in the eyes of those that looked at her - determination to do what they could to help either her or others in the same situation.

All those photos made the donor drive come alive.  All of you sat there with us with pride, a sense of humor and determination.  You showed us parts of your lives, your kids, mothers, fathers and husbands or wives, there were even some that had their donors with them too.  You showed us what is important in life and by doing this you helped increase the Marrow Registry by 15 people.  

Fifteen extra chances for everyone needing a donor.  I know its not as many as I would have liked....... that number is closer to 5000, but it’s 15 chances extra - thats wonderful!  And I know that all of those that signed up on Saturday will tell at least one other and so it will go on and on and one day maybe it will be a normal thing to do when we come of age - get on the register.

Alta,  from The National  Marrow Donor Program is wonderful. She was so easy to chat with, has lots of fascinating things to share and easily engaged with people who came in just for an ice cream and handed out information books to those who needed to think about joining.  It was wonderful to share the afternoon with someone so upbeat and cheerful and full of positivity.

The “Vein Ladies” on the Blood Assurance bus just seemed to have a blast all the way through.  Every time I went on board to get some photographs, there they were, full of laughter, joking and warmth and sometimes hanging out of the back windows chatting the the guys outside (see pictures below).  They really made everyone feel totally at home and even promised to sharpen a needle for me as I am a baby when it comes to those sharp things.  Well it turned out that I could not donate blood anyway as I had surgery while living in South Africa.  What a disappointment!  Ok, ok - I will admit to a slight feeling of relief at not having to get jabbed but what a pity that a surgery over 20 years ago would eliminate me from ever donating blood here.  I would have donated if I could - even had my I.D. ready.  I am already a card carrying member of the NMDP - that sounds so good!

So the day was a success - double digit donors and all.  19 blood and 15 marrow donors. It’s a day that has started many a conversation especially amongst the younger group that came to sign up and also has kindled some ideas in my head for a future donor drive. 

It was Adrian and his determination to do what is right, that got me off my butt to do this donor drive.  Yes, I could have done it because of Steven, but I had not yet done so.  Adrian definitely pushed me out of my comfort zone to do this.  I think that the idea that he started, the education of the younger generation, is what will carry all donor drives to true and great success.  Adrian’s Army is world wide, can be put into effect by speaking to just one more person, by holding a donor drive or by doing the many available things that can be done to spread the word about the need for donors.  Talk to just one more person.........

 Being out of my comfort zone while putting this donor drive together was scary, frustrating and disappointing at times..... but mostly it was wonderful!  There is nothing quite like spending a day surrounded by people who want to make the world a better place, who are prepared to go through some discomfort to make a difference and who do this with a wish that they ‘get picked”!  

A really big Thank You to everyone who signed up on the Marrow Registry or donated blood - you are true lifesavers!  Thanks to everyone that helped, supported and encouraged, listened to my fears and gripes over the weeks running up to Saturday. Thanks to those who sent me your photographs, to Kays Kastles, Amber from Blood Assurance , Alta and Carla from NMDP and The Vein Ladies!  You were all awesome and it’s you that made this happen.

Love and light

Annie

More than "just one extra"!

This is what its all about - Dawn is needing a match ASAP!

The local tv channel aired a quick bit about the donor drive and this is who they showed most of the time.  I just loved it!

Anyone that is not signed up - DO IT! You might be a match for her or someone else who needs it right now........

Alta - the "Marrow Lady".  What a lovely person she is - so easy to chat with and she had no problem grabbing the walk-in's and educating them.  It was great to see and learn from her.  We hung the pictures of people around the area she used to sign people up.

 

Great job, Ryan and Casey  :)                                                                          

 Lisa and Brian  - double signup.  Whooo hooo!

And then Greg just HAD to make a scene!  LOL

 James and Monica - another double signup!  Thanks you two :)

Blood and Marrow donor!  What a lovely attitude - this was a pretend grimace as he was giving his Vein Lady a rough time.....:)

Dawn donating blood after signing up on the Marrow Registry

Yet another donor.... He was on tv afterwards too.

 

Just 'cause she is so cute and she was there!

 More very special people - our Guests of Honor for the day:

Christine (in red) - a new member on the marrow registry and a blood donor too. Thanks Christine!  She is also one of the awesome ladies at Kay's Kastles who allowed us to use their place for this drive!  Deep thanks, Ladies!

 Brian in the blood seat - great job! :)

Talking about you, Lea:

Andre giving blood :) Thanks for cutting your sailing race short to do this!

Another Andre signing up for the Registry after giving blood  :)  Thanks!

Dawn and Greg - lovely people!

Greg, Dawn, Tyler and Carolyn's Hope.  You are doing an awesome job - keep it up!

Love the concentration - Greg signing up on the Marrow Registry  :)

The Vein Ladies taking a break.  I love this picture.  I can only guess at what was so incredibly interesting outside........maybe two guys and a dog? :)  ok - leave the dog out of it.......

m

These young ladies were incredible.  There was never a shortage of smiles to dole out, the sense of humor was lovely and I especially loved that they even offered to sharpen the needle for me!  A really big thanks to you all.

The Vein Voyager

Donor Drive tomorrow

Oh wow, where is all this worry come from?  I know it will be all it's going to be and no matter how many people we get to come in, it will be a success.  So why am I even feeling as if the gray hairs are sprouting madly all over my head?  

Here is the link to the article on Glamour.  Erin gave such a beautiful intro for me that I feel as if I need to do more!  Thanks Erin!  Just what I need right now....... :)  

http://www.glamour.com/health-fitness/blogs/life-with-cancer/2008/10/today-please-welcome-annie-a.html

I have a good many photos printed out to hang up so that people can see that being a donor really does make a difference to real people with real lives.  Thanks to everyone that so kindly helped in this way - I really appreciate that, and also that you shared your story with me.  

I will take photographs, of course, and will post them up soon too.  I am really looking forward to meeting Greg and Dawn.  I keep hearing what Greg's mom, Carolyn, had to hear and what Greg and his family heard too - "there is no match for me".  Lets hope that this drive tomorrow makes at least one less family hear these words.

Love and light

Annie

Happy Birthday, Steven!

A quarter of a century ago, my first child was born.........what an incredible experience that was. I remember looking at him and thinking, with a quiet chuckle, that although he was the most beautiful boy ever born, he also looked like a combination of my dad and ET.  

But now he looks just awesome.  :)

Happy Birthday, Steven

May it be the very best year for you yet, filled with love and smiles and a million wonderful memories made.

I love you and am incredibly proud of you.

Always

Mom

ps - here is a gift for you.............the moon!

Just ONE extra person........

So now that this ball is rolling and there is no turning back and I have to absolutely make this drive the best it can be - my stomach is churning and I started getting 'freaky' about it being successful.  What if only a few people turn up?  What if half the people that committed, back out.  What if people just don't get it and .............well, it flops?  So many what if's.  Most of them coming in the late night hours.

 I shared this thought and worry with one very special lady, Lea.  And her answer opened my eyes......... "One extra person saved my life", she said.  Think about it.  

ONE extra person saved Lea's life;  

ONE extra person saved Shane's life;  

ONE  extra person saved Trey's life; 

ONE extra person gave Adrian long enough time to make a very real difference in so many lives; to mention just a few...

  

Just one extra person has saved, helped and lengthened lives all over the world.  Just one.......... 

What an absolutely awesome concept!  In today's world, so often I feel helpless, incapable of really making a difference - I mean a real difference.  It's not easy to raise funds, to raise awareness, to keep on talking about cancer when so many days I just want to bury it deep and forget that even the word exists!  It's not easy to convince people that getting on the marrow Registry and even being a donor is not the terrible torture that just the thought brings to mind.  None of it comes easily or naturally to me.  But Lea's words today, her reality, her life - all made possible by one single person....... wow.   This really lit me up and put it all back in perspective.  Of course I knew this before - but put so simply - well, that really made it sing.  Thanks Lea!

Simply put, I am in awe of all donors and my aim is to add one donor at a time to that registry.  Just one.  I guess it's like losing weight - one pound at a time.

This is how you can help.  I need your photos.  I need photographs that I can print out and hang on the windows and walls where the donor drive is being held.  It's inside a lovely ice cream parlor that has plenty tables and chairs to sit at and look at the wall and window space that we plan to fill with pictures of those needing blood, needing donors, going through transplant, been through transplant, and of course, the donors and the families affected by every aspect of this!  So, if you would like to make this drive more personal, more real - please send me your photos!  Make them family pics, single pics, hospital pics - any photos will help to show others just how this affects everyone dealing with this disease.  Send big files so that I can print them 8 x 10 size and send to: livingwithcml@yahoo.com.  I would really appreciate any and all photos.

One of our customers has a grandson, Hunter, going to transplant at Vanderbilt next week.  This little 12 year old has Aplastic Anemia and he has needed lots of blood to keep him alive over the past years.  Now it has come to the point where that is not working any more and he needs to get a transplant.  He has a donor, but his story made me realize just how important it is to be a blood donor too.  Another really easy way to help keep someone alive and another way to make a real difference in someone's life.

Remember - it takes only ONE extra person to make an enormous difference in many people's lives.  A whole community is affected by the help of one donor.  Talk to one more person, teach one more person.

Just ONE extra person.  I know just how much that one extra person will count if Steven ever needs to go to transplant..... There is no indication of this at all at this point, but I am always aware that everything could change in the blink of a test result.   This reminds me - the 'elephant' arrived yesterday morning - that's the PCR kit that will have it's tubes filled tomorrow and sent off for another view of where this disease is in Steven.  I have to say that he looks great, sounds great and is looking forward to a week on the Florida coast.  Lucky bugger! :) 

And here is the link to an article that was in our local paper today - look at page 6.

http://community2.timesfreepress.com/news/2008/oct/08/soddy-daisy---october-8-2008/

love and light

Annie 

Marrow and Blood Drive

On the 25th October, 2008 we are holding a blood donor drive in combination with a drive to get as many people signed up on the Marrow Registry as possible.  Normally there is a cost to join the marrow registry, but because we are doing this combination drive, the cost will be carried by Blood Assurance.  Wonderful, hey?

I want to get the word out firstly that to join the Marrow Registry simply m

eans giving a swab of saliva and then the data from that is entered in the registry.  The process of donating marrow is now mostly done via the arm, where blood is taken out, run through a machine that separates out the blood-forming cells and the remaining blood is returned to you through your other arm.  No drilling into bones, no bone removed and even if you do donate by actual marrow, which is an outpatient surgical procedure, you will not feel the pain - the anesthesia is goood, I hear :)

The recovery time after a donation is, in both instances, normally short and, in my opinion, the chance to save a life far outweighs any discomfort of either procedure.

But - back to the donor and blood drive.  I would love to make the benefits of donation, both marrow and blood, very real to every person who walks into Kays Kastles Ice Cream store on the 25th.  I want them to see the faces of those living because of a transplant, needing a transplant, because of blood and because of donors!  I want these faces all over that place and I would love for people to be able to talk to and even meet people dealing with different conditions needing marrow and blood and also the donors! 

I feel that being able to talk to someone who has been a marrow donor will alleviate many of the myths about this process.  So.............if you would like to help in this way, please send me a photo of someone you know that is dealing with this in any way - tell me whether they are needing a donor, already had a transplant, whether they regularly need blood or if they are a donor.  And if you are nearby, please come up and join us - we would love to meet you!  Greg, Rhonda - you still coming up? Pretty please..........:)

If anyone has any ideas, suggestions or anything that you think will make this drive all it can be, please email me and let me know.  This drive started off as one in honor of Steven and in memory of Adrian who is still making incredible changes in the education of people about donations, but now it has become more, much more.  This is a public blood and marrow donor drive - open to the public and for the public.  I still view it under the umbrella of Adrian's Army as it was because Adrian did so much that I got my behind out of neutral and got this ball rolling. In addition to Steven and Adrian being the main focus, this has now become a drive in honor of everyone dealing with the medical conditions that require blood and marrow in order to survive.  It's in honor of all those that fight this fight, their caregivers and supporters, its in honor of everyone that deals with this on a daily basis, in honor of those that have already saved lives by giving blood or marrow and in memory of those that have not survived - its because of them that so many of us do something positive to try to make sure that less people have to fight this fight.  

It's quite incredible just how much strength I get from others, other people with cancer, those that are cured, those that are waiting for that cure, those that love them and can only sit and wait and hope and those that are donor.  Those donors really do hold a special place in my heart.

And now I find myself rambling.  Just finished watching the Biden/Palin debate and needed to fill my mind with positive things.  Wow, did I just say that?  Cancer is more positive than politics??? WOW  What a good note to end the night on.

Love and light

Annie

Making ripples........

Oh so much has been going through my mind and yet so little......  I know - that sounds weird but it's so true too.  We were traveling for only three weeks this time, but the beauty we saw was simply amazing.  The man-made at Mt Rushmore, the absolute awe in Yellowstone National Park, the ongoing amazement over the Canadian Rockies both ways and those Northern Lights!  

I have come to the conclusion that all the beauty in this world is not only there to balance out the stuff that is not so good, but it also really puts everything into perspective for me.  There is no way I can stand at the edge of a geyser in the caldera of a living volcano, watching and listening to it boil and feel that I have any sort of control in the big scheme of life.  Driving through the Canadian Rockies, through those totally awesome mountains topped with glaciers hundreds of years old, with rivers that will flow with melted snow and ice whether I am there or not - well, this all helps put everything into perspective.  I think.

While driving the rv along many long and beautiful roads, my mind wandered over many topics and ideas, wishes and dreams.  One was why life is not fair.  I played with that one for a goodly while until it struck me (again) that life is neither fair nor unfair..... it just is.  I toyed with the idea that if we all had life our way, wanting no pain or suffering, bearing no losses of loved ones and having almost everything we felt was 'fair'.........well, maybe then we would all be stagnant.  Maybe then we would not appreciate what we have or who we have in our lives.  I know life is not as simple as this, but when I am out there, standing in the waters of a river in the middle of nowhere, surrounded by unending and majestic mountains - well, it all seems terribly simple and basic.  And then we get home again.  This is why I surround myself with photos of these beautiful places.

The mortality of myself and those that are firmly implanted in my heart, make me think seriously about what is important in life and what is not.  And again, when think about those deep blue pools of boiling water in Yellowstone, the towering mountains and especially those lights flitting across the sky...... I know, I KNOW that there is nothing as important in life as letting those that I love, know that I love them.  There is nothing as important as giving life everything I can and enjoying the awe of what I can see and the awe of what I can feel.

And now we are home again and very busy again which is totally amazing.  So many people waited with their sick computers, for us to come home and then descended like hungry vultures.  Frank even put in two new workstations, for a total of 8, which have been full almost all day, every day.   But I have still had time to sort through the photos of these lovely places we went and even started sorting the photos of the last trips.  I have hundreds of photos stapled to the walls of the shop and playing on computer screens, reminding me that there is always something bigger and more wonderful than any worry I have, that it will all go on, despite what is happening in my life.

And now it's time to start getting the blood and marrow drive on the road.  I met with Amber from Blood Assurance today - she has been so helpful and encouraging, what a lovely lady.  She brought me flyers that they had printed up for the drive and some other useful information too.  She also told me that her husband was recently identified as a matching marrow donor for a patient and just a few weeks ago went through the donation process.  Another hero!  

I am hoping that he will  share his thoughts on being a donor with us all on this blog. I was humbled by the tears in Amber's eyes as she described the process that he went through to save a stranger's life.  These people that donate, whether they are a sibling, a stranger or a friend - they are all absolute hero's in my eyes.  I also think that the more people can hear about their good experiences and how relatively easy and safe it is to save someone's life, I really believe that it could make a difference in the number on the marrow registry.

Just another thing.  My main drive has been to get the numbers up on the marrow registry, but recently I have been reading a few new blogs and it finally sunk in just how important it is to donate blood too.  I never realized how often people needed platelets after a transplant to 'pick them up' to give them strength and, well, to keep them alive and going!  So now I am pushing the blood donation side just as hard.  It's life.  It's truly life in the truest sense. For so many people in so many situations.

The fact that I have been so incredibly blessed to be able to see the amazing sights I have seen kinda gives me a responsibility to .......well, yes...... pay forward.  To give back to a life that is so wonderfully good to me.  The blood and marrow drive is one way I can do this, it is one way that I can take one step on the road that Adrian carved out........ 

If any of you are nearby, please join in on the 25th and donate blood, sign up on the marrow registry or just come and share your story.  We need to hear the transplant stories, need to meet the hero's who made them possible.  We need to make this part of life known and to let as many people know that giving life is possible with a relatively easy process.

Steven's pcr is to be drawn again on the 9th Oct and the wait starts again.  He looks great and, well, I am just simply so proud of how he is handling all of this.  I have handled it by writing this blog and meeting incredible people. 

Thank you, thank you

love and light

Annie

This is what I want to do - no, no - not to swim in icy glacier water, but to make ripples in life.  Lovely, gentle ripples and maybe they will turn into waves somewhere down the road.

Light the Night!

We have been back home for a week now and it has gone so fast and its been good in so many ways.  There have been many times when I have heard those cogs in my brain frantically cranking to get up to speed again, to dredge the things I know that I know, to the forefront again and get back to real life and the things that need to be done.  

Going through our mail that Steven collected while we were gone, I noticed that the Light the Night walk was tonight!  The first year after Steven's diagnosis, we were out of town on that fundraiser to Alaska, the second year I was angry about it all and this year - well this year I just wanted to walk.  Steven had made other plans and after the initial "oh what a pity" thought, it hit me how right this is...... we will walk in celebration of his ability to live his life to the fullest, to enjoy and not be tied down to leukemia in any way.

What an experience.  We had collected a few hundred dollars in the shop over the last few months and this was a good time to hand that over to the fight against this disease and we got a Light the Night t-shirt each to wear for the walk.  So I promptly hauled out my permanent marker sharpie and started writing names of people involved in cancer all over that shirt!  You should have seen the looks on people's faces.  I then did some fancy handwork and out from under the new written on t-shirt came my ordinary shirt and I was ready to walk.

And then we collected our balloons.  Together we carried four.  The red balloons are for the supporters to carry, the white ones for the survivors and the gold balloons are in memory of someone we loved that did not survive this disease.  We carried three red balloons and a goldie.  Frank carried his one for Steven,  I carried one red balloon in honor of Steven, one red onein honor of everyone I know dealing with leukemia - caregivers and fighters, with Cam and Cora at the top of that list and a beautiful gold balloon in memory of Adrian on behalf of Kay, Keith, Carrie and family.  Yup, I wrote on the balloons too.

The walk was held in downtown Chattanooga, right next to the Tennessee River at Coolidge Park.  It was beautiful there, with the sun setting over the river, highlighting the ripples on the river and lighting up the soft green grass of the park.  The park was full of people playing ball, throwing frizbee, listening to music, biking and just ambling around.  Then as the time went by everyone headed towards the Leukemia Light the Night Tents where the different color balloons were being blown up.  The colors all around were lovely and it was awesome to see that most people were smiling, kind, gentle and friendly.  It was quiet, not hushed as if something was wrong, just quiet in a way that said that everyone was on the same page and respectful of the very many feelings that were rushing through everyone and all at peace with being there.
The lady from the local chapter of the LLS gave a beautiful speech and four candles were lit in honor of those fighting this fight and those that have gone on ahead.  It really was beautiful and I want to contact her to ask her for a copy of that speech.  Then the walk started.  One very energetic and lively lady with a beautiful smile and a determined gait, led the way out of the park, on to the street and up to the first bridge.  

I don't know that I can explain the feeling of looking in front of me and over my shoulder and seeing a sea of balloons both ways and knowing that every one holding those balloons 'got it'.  They knew about the fight, from which ever angle they had to deal with blood cancer - they understood the scared's, the fears the hopes, the happies and they all seemed to know that it was ok to smile, to laugh and to live to the fullest too.  So, we swarmed over that bridge watching the last of the sun setting as some motor boats delivered even more ripples.  Some people passing by, not involved in the walk, looked at us all with puzzlement, others were explaining to their kids what this was all about but mostly none of them made eye contact and they carried that certain type of hush that says that they, thankfully, are not dealing with cancer in their lives!  Walking in a beautifully large group of supporters and survivors it was lovely to see so many that are not affected by cancer.

We trundled off the first bridge, through a little bit of downtown, nicely protected by the firmly raised hand of the traffic cops, down a lovely steep hill and on to the second bridge headed back to the park.  I was stuck by the number of young people walking and by the respect shown and the understanding and gentle arm touches amongst everyone as they passed by.  I walked with my balloons fluttering above me, and hoped so hard that even our small contribution, show of support to others, hoped that this would be at least one little drop in the ocean towards a cure.

As I walked I thought of all the love and caring that I have been shown over these last couple of years, of the friendships that have formed, the hope shared, the heartbreaks and the joy in good numbers.  How absolutely rich my life is!

Watching hundreds of people walking over the bridges with balloons with lights in them was very emotional and totally beautiful.  There was an old man that walked alone with a white balloon.  He did not seem to want to walk with anyone and hummed with a lovely smile as he walked, seemingly happy in his own space.  Then there was the family with the kid, still bald and with a t-shirt that said 'Survivor!' on it - he skipped almost the whole way with a beautiful smile and bright sparkly eyes!  Even the little kids were well behaved - there was no whining no crying - no matter how young they were.  Again, the number of people that seemed to be in their twenties, was quite amazing - I think they made the biggest group.

And then we wound our back off the bridge, and back into the park, through the row of luminaries that had been placed along the last part of the path.  I had put one up for Steven and one for Adrian.  Just seeing those lit candles got the tears running.  People, me included, took many pictures and we all took group pictures of others so that their group would be complete in the photos and memories.  
I did not want to leave there, I wanted to hang around until the last person had left and beyond - it was as if there was a little bit of everyone's soul there...........strange.  But off we ambled and then I spied a fountain.  Yup - water.  And we headed that way to capture this lit up fountain that was just beautiful in the night light. It's one of those fountains that you can walk around in and cool off or just enjoy, and right then two little kids did just that!  They twirled and jumped and laughed and kicked water in stark silloutte against the dancing water and gave us such a beautiful, innocent and hopeful end to one truly amazing evening.
Here are a good many photos - if I left anyone off my t-shirt, you were in my heart too.

love and light
Annie

Waiting to start:

Lets go!

Walking...

                                      These three just sat there in quiet companionship

                                                     Some ladies provided bridge music :)
                                                       Over the first bridge
                                                                      Frank on bridge

              Me and balloons 

Frank wishing...........

                                                      walking, hoping, caring
                                                           Over the bridge
                                                                   Peaceful
                                                                           Me

                                                                 Balloon set free for Cam

Luminaries..........

For Steven

                                                    For Adrian
                                                  Innocence............

next year again

:)