Sometimes..........

Mostly I am pushing the barrow, but sometimes I am the one inside....  

These past two weeks I have found many things to write about.   Sometimes I want to rant and rave against all sorts of cancer and it literally hurts to read about the battles some people are going through, just fighting like hell to stay alive and have some quality of life.  Two that come to mind immediately are Michelle and Nick.....  Here are two young people who are good people, well liked and much loved, doing good things in their lives and whamo......nothing will ever be the same again.  Ever.  No matter what.  So much is stripped not only from them but from their families and friends.  I know it hits everyone really hard when someone is fighting like this for their lives, but I find myself identifying with the mom's of those with the cancer and I want to kick and scream against the unfairness of it all. 

There is absolutely no way that I can begin to feel or imagine what the mom's are going through, but I have to admit that at times just thinking about it squeezes my heart and soul and makes my eyes leak.   Most times I don't allow it to become too 'real' for me because that just opens a door that I have no need to go into.  A lovely lady, Lottie, once said to me that worry is like a rocking chair - it goes nowhere.  Well, I do my best to stay out of that rocking chair, allowing only short visits and making sure I don't get too comfortable there.  

About two years ago, I spent the night staring out of our kitchen window, looking at the crowds gathered at the funeral home just up the road, and then watching as they left again.  There lay a young man who was killed while in the Service in Afghanistan.  Someone had told me that his mom would not leave him there alone, so she stayed with him all night long.  I don't know why it got to me so deeply, but I stood there much of that night hurting for her so badly.  I made the mistake of almost trying to take on her pain, trying to feel what she was feeling and trying to make sense of it all.  I was scared that I would be in her shoes one day way too soon.  I know now that that is not my place and not a wise or smart thing to do.  There is no need for me to spend time in that rocking chair, but others do - and I really hate that.

Almost all the time I can, and do, see the positive side of things, especially after a day of having Steven work with us in the shop.  He is so easy to work with, full of life, jokes and fun and learning so well.  And CML really does not feature in those days any more.  Sure there are small moments, and mostly those are thankful moments, not one of worry or scared-ness.   

I think that what I am trying to say is that there are multiple ups and downs in each and every day, the downs are few and far between.  Sometimes it just does not seem to make sense to write all about them without it all seeming totally crazy.  

Sometimes I see a photograph that I have taken that helps me describe what I mean.....and this wheelbarrow does it.  Mostly I push that barrow that is life, I have the control over my feelings and thoughts. But a few times here and there, I am the one parked off inside letting life and all the things in it push me around.  But only very short times these days.

I am so incredibly grateful.  And I wish I had a magic wand for all those mom's that don't have the peace that I have.

Love and light

Annie

Peaceful, warm and a golden sunrise

And so I find myself relaxed, quiet and peaceful and playing with some of my photographs again.  This sunrise really sang to me today and I thought of Nick and Diane and family who are struggling really hard to fight off the effects of cml.  I wish them all the peace  and the quietness that this picture conjures, and then tons more.  

Love and light

Annie

African thunderstorm

http://www.youtube.com/watch?v=05ip-N0H1Ig (click on this link)

The beginning part especially of this is just incredible...... it makes me feel it from the soul.  Close your eyes and just listen and imagine that storm. 

Just listen - its awesome.

love and light

Annie

life and miracles..

I am in a good mood, very happy with my life right now and at the same time I am mad, angry and all upset.  The good mood is what is keeping the upper hand, right now, but every now and again the scary part of life pokes itself though like a hernia.  And then I wonder why I write about it - well, because it's part of my life, part of life with cancer in one of my kids and it's real. Also, if I write it, then it's a way of getting it out in a deeper sense, a sort of letting go and moving on.

  

So, what am I angry about? When I see Steven looking so well, with his life unfolding in front of him, his laughter, his joys, frustrations and his day to day stories and dreams, when I listen to all of this and cml is forgotten it's so good.  And then a simple comment that is made by millions, makes my hackles rise........ "I have lost two pounds, mom", says he with a smile and a totally unworried attitude.  I mean, what is the problem with that?  Well, my mind immediately scrolled through a hundred questions at the speed of light - how are you feeling? does your left side feel swollen, are you less hungry than before?  how...? is......? do....?.....  And cml is squarely back in the limelight.  Just for a moment.

Mostly it's gone in the blink of an eye again - but it's like someone blowing an enormous pink face-covering bubble gum bubble in room when it's least expected.  After it's all back in place, one wonders if it ever happened, and life moves on.  But it happened.

I get angry when I see other youngsters battling this disease and not having a good time of it at all.....  A bone marrow transplant is supposed to 'fix' it and yet I read of people battling other devastating issues created from the gvhd after the transplant.  This is not right, this is not fair and these are the things that make me angry - it should be us oldies getting this stuff, not the 'kids'!

Cml is not in my mind nearly as much as it used to be even a year ago, but there is no use in pretending that it's not there or that I am not keenly aware of how Steven looks and feels.  I really am very fortunate that he is doing so incredibly well and not a day goes by that I dont fervently hope that it continues.

The other side of the cml coin is that it has made me realize that life really is short, vulnerable and very precious.  I try to look at each day as a treasure - without getting too soppy about it, and each time I talk to or see my kids, grandkids, family or friends, I know that that might be the last and I try to make it better than it would have been without that thought.  I cannot say I always succeed - but heck, I try.  

Every day is a miracle that we are all able to be all we are and then tomorrow, today becomes a wonderful memory.  Maybe this is the miracle of living life - the Memory of the Miracle.

Enough rambling........ Big hugs to Diane and Nick...... I SO hope you are doing better tonight.

love and light

Annie

ps - the photo is of a grey whale with her newborn calf who visited us in Mexico - I just love the way they stick together...

Die, cml cells, die!!

A lethal cancer knocked down by one-two drug punch

Bar Harbor, Maine – In the battle against cancer, allies can come from unexpected sources. Research at The Jackson Laboratory has yielded a new approach to treating leukemia, one that targets leukemia-proliferating cells with drugs that are already on the market.

Jackson Adjunct Professor Shaoguang Li, M.D., Ph.D., who now has a laboratory at the University of Massachusetts Medical School in Worcester, led a research team that identified a gene involved with the inflammatory response that could hold the key to treating or even preventing chronic myeloid leukemia (CML), a lethal cancer.

In research published in the journal Nature Genetics, the researchers also showed that an asthma medication for human patients is an effective treatment for CML in mice.

The gene, Alox5, processes essential fatty acids to leukotrienes, which are important agents in the inflammatory response. But according to the researchers, Alox5 has a more sinister side. It is vital to the development and maintenance of cancer stem cells.

Cancer stem cells are slow-dividing cells that are thought to give rise to a variety of cancers, including leukemia, and to be critical for maintaining them. Researchers theorize that cancer stem cells must be targeted for effective treatment of many cancers, but direct evidence is still lacking.

The researchers found that CML did not develop in mice without Alox5 because of impaired function of leukemia stem cells. Also, Alox5 deficiency did not affect normal stem cell function, providing the first clear differentiation between normal and cancer stem cells.

Li also treated mice with CML with Zileuton, an asthma medication that inhibits the Alox5 inflammation pathway, as well imatinib, commonly known as Gleevec, the most effective current leukemia medication. Imatinib effectively treated CML, but Zileuton was more effective. The two drugs combined provided an even better therapeutic effect.

The Jackson Laboratory is seeking patent protection on the novel approach to treat CML that Li and colleagues have demonstrated.

The exact mechanism for the Alox5 gene in regulating the function of leukemia stem cells but not normal stem cells needs further study, but it appears that the two types of stem cells employ different pathways for self-renewal and differentiation. The findings provide a new focus of study into how leukemia stem cells are distinct from normal stem cells and how they can be targeted in cancer therapies. A future clinical trial targeting Alox5 will provide the first anti-stem cell strategy in cancer therapy. It is likely that other cancer stem cells will have specific pathways that also differentiate them from their normal stem cell counterparts.

###

Li conducted the research primarily at The Jackson Laboratory, with collaborators at UMass Medical Center and the Dana-Farber Cancer Institute at Harvard inBoston.

The Jackson Laboratory is an independent, nonprofit biomedical research institution based in Bar Harbor, Maine, with a facility in Sacramento, Calif. Its mission is to discover the genetic basis for preventing, treating and curing human diseases, and to enable research and education for the global biomedical community. The Laboratory is the world's source for more than 4,000 strains of genetically defined mice, is home of the mouse genome database and is an international hub for scientific courses, conferences, training and education.

 

The honeymooners are back!

Has it been two weeks already since Steven and Laura tied the knot?  Wow......  Thinking about that wonderful day still brings a smile to my face, and yes, I have spent endless happy hours sorting through the 13oo photos I took and printing many of them.  If you want to see more photos - go here:  http://s626.photobucket.com/albums/tt344/ibannie2/

 This day meant so much to me.... Seeing Laura walking down that pathway to join with the young man who could not take his eyes off her, was just incredible.  Yes, there were tears, but I did not want them to take over, so up came the camera and I clicked away all through the ceremony.  I have developed the knack of being able to see life happening while pointing the camera in the right direction, so I did not miss out on the moment nor limit myself to seeing it all through the lens only.  

The love and happiness and peace that both Steven and Laura exuded was lovely - it shone through their eyes, the way they held hands, the leaning in towards each other, the look in their eyes........  Their deep happiness was undeniable and totally wonderful.

And I only thought of cml once and that was when I thought that it was quite amazing that I had not thought of cml at all!  How's that?!  Looking at the photographs of me, I was really thrilled that my leukemia bracelet was not there with us all.... that it was still happily parked at home in a folder filled with other items from the previous 3 years.

Steven and Laura had a wonderful honeymoon - they went on a cruise to the West Caribbean and looked so relaxed and unstressed when they got back.  Now its all back to dealing with life without all the planning and promise of a lovely party and vacation ahead.  I laughed at Steven already cutting the lawn and fighting with the weedeater....   I bet that in some ways it already feels as if the past two weeks are fading into history.

Oh yes, they missed the flight to Miami for the honeymoon cruise, so we quickly got them another flight that got them to the boat with minutes to spare.... but then when they tried coming back again, they found that Delta had cancelled their return flight!  Apparently Delta cancelled the return leg because the first leg of the trip was unused.  That is just not right - they had that ticket fully paid for and had to buy new tickets to get back home.  They ended up on the same flight, at double the cost.  Something stinks and Delta is going to hear about it!

I really take my hat off to both these young people.  They love each other, stand by each other - no matter what!  Yes, there will be tough times, there have been already with the cml, but they just seem to get stronger and more determined to get ahead, to live, love and to enjoy.

In just a few months Laura starts night school in addition to her full day job and the challenges of fixing odd things around the house and garden start for the first time for them in their own home.

There are times since the wedding that I have felt a bit wobbly - tearful even.  Maybe it's because I am so incredibly grateful that the horrible feelings and fears I had just over three years ago are just not that intense anymore.  While printing and framing a couple of photos again today, I sent yet another set of deeply sincere thanks to Dr Druker.  Where would we be without all his work and dedication?  

This has been one truly beautiful year.  Baja trip, Steven and Laura buying a house and getting married, good pcr results, another grandbaby on the way and my youngest daughter moving back to TN.  Sadly this is because her husband is going to Afghanistan later this year, but we get her for about a year!

I am so grateful, so grateful for so many things....

Oh - and here's something else I am grateful for - Lea!  Go and read her latest blog on Glamour here.

It's quite amazing to me that even though cancer brings so much devastation it also brings out the most awesome people.  Any blog you read, you will find people responding, holding hands, encouraging or crying with someone...  It is honestly a whole new world.

Also, visit Diane's blog - I love her style of writing, she really nails those feelings on the head, makes one feel her pain and at the same time I find a chuckle bubbling out of me - she has a lovely way of making words jump to life.  Nick, her son, can definitely do with any and all extra thoughts, prayers and encouragement.    Diane also has some lovely music playing on her blog.

My life is so filled with wonderful people - thanks to each and every one of you!

love and light

Annie

Presenting Mr & Mrs K

 

What a totally awesome day!

Before the wedding.....

When Steven was first diagnosed I put on one of those bright red 'Relentless' bracelets that the Leukemia Society sells.  And it became so much a part of me that I hardly ever noticed it at all.  It faded gently from bright red to almost skin tone, blending in with everything I wear - kind of like cml did in our lives.  

But now that Steven's wedding is almost here, I started wondering about taking it off for the big day - not wanting to bring cml to this day in this manner.  It was Wednesday that I first thought of taking it off, but somehow it did not feel right and so it stayed.  During the day on Thursday my mind pondered the issue, but again it was not strong enough to do anything about it..

On Friday morning it gently broke apart and lay on the couch, finally off my arm.  The fear of leukemia has largely faded from where it was initially and now it wont be in all the pictures either, just as the color of the bracelet faded.

It's good.  It seems to me as if it was just not meant to be with me today..... good! 

What a day its going to be - I promise pictures - soon!

love and light

Annie

Pure giving...

I was sent this short clip in an email earlier this week..... and it's stuck with me - so now you get it too..

love and light

Annie 

Another Award for Dr Druker!

European Inventor of the Year 2009 in the category "Industry"

Chronic myelogenous leukaemia (CML) was long-considered one of the deadliest forms of cancer, capable of striking at any time, causing extreme pain and worse still, affecting both adults and young children. Before the work of two pioneering medical researchers, a diagnosis of CML and subsequent attempts at treatment guaranteed prolonged pain and no certainty of remission. But now with Glivec, a cancer fighting drug with a 98 percent remission rate, CML has lost much of its former bite thanks to American oncologist Brian Druker and Swiss medicinal chemist Jürg Zimmermann.

At a glance

Inventor(s): Jürg Zimmerman, Brian Druker

Invention: CML Treatment (marketed as Glivec)

Sector: Healthcare

Company: Novartis

In 1960, researchers identified an abnormally short chromosome in 95% of patients with CML, which they named the Philadelphia chromosome. Understanding the phenomenon of the Philadelphia chromosome was seen as the key to curing CML. After another 13 years of research, it was discovered that the Philadelphia chromosome is the result of two chromosomes swapping DNA.

By the early 1980s, researchers demonstrated that the DNA swap resulted in a fusion protein (the product of two genes or proteins joining together) called BCR-ABL. BCR-ABL causes the overproduction of white blood cells in the body. Where healthy blood contains 4,000 to 10,000 white cells per cubic millimetre, blood from a CML patient contains 10 to 25 times this amount.

In 1990, researchers began looking for BCR-ABL inhibitors and at Novartis, a phamaceutical company based in Switzerland, scientist developed a compound designed to reduce BCR-ABL. Jürg Zimmermann and his team set about improving the compound, eventually creating a potent and specific BCR-ABL inhibitor.

In 1994, Novartis teamed with Brian Druker and set about refining and readying the inhibitor for clinical trials that began in 1999. Today, the compound now known as Glivec is being hailed as something of a wonder drug. Follow-up data show that Glivec therapy helped 98% of patients in chronic-phase CML stabilise their blood counts.

Moreover, in 92 percent of cases, the Philadelphia chromosome was completely disabled, though still present. Patients treated with Glivec followed by a bone marrow transplant, a common course of treatment for CML, experienced a cure rate of 60-80%. Side effects of Glivec tend to be mild and easily manageable, with less than 5% of patients experiencing serious adverse effects.

Thanks to the Zimmermann-Druker partnership, the resources at powerhouses like Novartis and the tireless work of other medical researchers, it seems suddenly possible that a cure for cancer may indeed be found in our lifetime.

This is incredible hope!  I hold on to it every day even though Steven is doing so very well.  I am absolutely thrilled by Dr Druker's dedication to finding a cure for CML.  It humbles me tremendously to think that every hour he is thinking about or working on the cure, he is doing this for my kid.  I really don't know that there are enough ways to thank this man.

This was an perfect article for me to find and read today, on Mother's Day.  Apart from all the flowers, chocolates, cards and phone calls from my three chickens and others - this added that extra light.  

I hope all mothers had a wonderful day, felt treasured and loved and appreciated.  I certainly did.

love and light, 

Annie

Results and things....

Time flies and so many things are going on right now - all good.. but I am only getting to posting Steven's PCR results now - almost a week after they came in!  Amazing how time changes things.

This time the numbers are slightly higher.....and I don't know if it's because I have this eternal knowledge that he is going to be fine, or whether it's because it's really not a big deal, but I really did not become 'frilly' about it at all.  Even the wait for these results have been easier than all the others.

In January the numbers were 0.039% (0.14 IS) and this time they are 0.049% (0.18 IS).  

I actually expected the slight rise as I have seen that when Steven has been more stressed, his PCR has always hopped slightly upwards.  I might be imagining this, but it seems as if stress does have an effect. He has had buying a house, moving, their fast approaching wedding and honeymoon as well as a good amount of parting with many dollars over all of these things.

Most of us would definitely have stress over any one of these, so I am almost surprised that the numbers are not higher.  I am SO glad they are not, though.  Now is not the time at all to worry with the wedding just over a week away and a lovely cruise to enjoy.

I am so excited about their wedding - everything is in place and I just know the day is going to be totally wonderful.

Little Miss Laura is one lovely young lady, not just in her looks but her personality and determination to get ahead in life.  She has been accepted into nursing school and in the new school year will be going to night classes as well as holding a full time job.  Before Steven was diagnosed with cml I thought she was great - now I honestly feel that she is much, much better than great - she is one seriously special lady - and of course, a perfect match for Steven. :)  

Here is a young lady who fell in love with a young man - with an expectation of a good many carefree years ahead.  Right as they started getting really serious about each other the cml bomb dropped.  Did she run?  Nope. Did she hide or fall apart?  Nope.  She stood up and faced it all and incorporated it into her daily life.  I know that it's tough on her sometimes and I know that there are many times when its just easier for her not to think about the leukemia at all and go on 'as normal'.  But she deals with it as part of the bundle that is Steven.  She deals with it with grace, love and responsibility as well as a good dollop of humor.

Laura is such an incredible help to my peace of mind.  I know that she is right next to Steven in the treatment of the cml.  I know that she occasionally has to nudge him re his Gleevec and is supportive and understanding of the tiredness and other minor side effects Steven has.  Even though its got to be quite an adjustment and a constant reminder that their lives are not as carefree as any of their friends' lives, never will be, Laura is firm in her vision and determination of a good and full life together.   I wish I could explain just how deeply this impresses the heck out of me. 

I know that there are many people out there dealing with things much more critical than this cml in Steven, but - and this is a big but - this is "our drama" and Laura is the closest to it apart from Steven, of course.  And in my mind and heart I know that this is one really special young lady.  I can not imagine how it would have been with someone less supportive and conciencious

and willing to keep me informed, not only about Steven, but importantly - her own feelings on this.

I am obviously very proud of all my children and children-in-law, and am absolutely thrilled to soon be officially adding Laura to my brood.

Laura I love you, always will and I thank you deeply.

love and light

Annie

 

Many things learned....again.

So many things swirl through my mind and I wonder sometimes at the wisdom or need to write them down.  Many of these thoughts disappear into the days that are screaming past and other keep swirling around the back of my mind.  

First - this pcr waiting time has been so peaceful and smooth..... I have literally not worried much at all and even today when Steven went to the doc to get those results, I really did not even feel any hairs turning gray!  He will bring me the results on Saturday and I have decided not to call him and ask for the actual number - Saturday is close enough  :)  Sometime I have to turn it all over, and this is a good start.  

This past week I read about another person who died despite trying everything to get rid of cml.  It hurts.  Its scary.  I hate it.  And yet its reality and to shy away from it just does not help at all.. so I looked at it squarely and then flipped through Steven's folder of all his results, some of his recent photos and I felt better again.

I had a conversation with someone this past week where we were discussing natural healing of diseases, cancer included. After hearing that I was not willing to jump in boots and all without doing much more of my own research and get Steven doing what this person felt would cure him,  this person said that ' most caregivers would want to help the person they are caregiver to'.  Well, I know absolutely that this person did not mean it in a nasty, mean or derogatory way - but rather that they are very intense and excited about their discovery, belief and are perhaps frustrated at my lack of equal enthusiasm.  But it hurt.  Of course I want what is best for Steven, but I am not ready to try to get him to try something without first finding out all angles about it.  I know enough to realize that different diseases react differently to even natural products........... and, well now I feel as if I am defending myself again, but thats what that comment did to me.. made me justify why I was not getting Steven "to be healed".  Sigh. 

I am not really a caregiver to Steven - he really does not need one but I do keep tabs on everything for him and share the stuff that I know is relevant or helpful.  Does not sharing this 'natural healing' information make me less concerned or something? I don't think so, but it does niggle in my mind.

Today I also got a serious lesson is the absolute necessity of getting copies of medical records as the results come in as well as being 110% informed about results and what tests are done.  I had gone for some basic testing a few weeks ago, got the response of  "all clear" and had I been one of the majority of people today, I would have left it right there.  Not only was the 'all clear' not correct (nothing serious at all), but I was not given the option of taking meds for the minor problem and only discovered this information when visiting a different doctor today. Talk about an instant 'blood boil" 

If this had happened to me three years ago, I would not have done anything about it.  I would have just been quietly angry and moved right on, probably changing doctors, again, and losing even more faith in the medical world.  But I did not do this this time, having learned so much since Steven's diagnosis, I headed to the other doctors office and voiced my anger to both the doctor and her nurse.  I must say that I was really pleasantly surprised at their response and will stay with them.  I know that the communication problem was not on purpose and it definitely did not seem to be pure negligence as I had heard only good about them before going there and felt totally comfortable with them both.  I understand that life happens and sometimes things come together to create a mess like it did with my results.  But happen it did.

I do believe that because I went down to talk to them that this will help prevent it happening again and I seriously believe that we should all be very comfortable in doing this when we are unhappy with something our doctor says or does.  How else will these people that we entrust our lives with, know how we are feeling?  With all due respect to the years of learning they have done, they are first and foremost people, and that makes them just as vulnerable to making mistakes as we all are.

So go on - if you are not happy with something your doctor says or does, or how long they make you wait or the lack of communication - talk to them!  Your life might depend on it.   

This brings me to another thought.... Lets say that I had not asked for more details on my test results, lets pretend that I had been happy with that 'all clear' and lets pretend that there really was something serious going on that I was not told about.  Who would be to blame when the serious stuff hit under these circumstances?

Seriously.....think about it.  I am in charge of my life.  I would be totally stupid to give all that power to someone who hardly knows me, someone who sees a constant stream of people all day long and who would probably not recognize me in the grocery store, someone who cannot possibly be expected to care about all their patients as I care about myself.  How could I place full blame on someone else  in those circumstances if I had not cared enough about myself to make sure I am ok and to see and understand my own results?  

Keep up with your tests and results and get a copy of them all.  And encourage someone else to do so too.  It can save a life!

All in all today alone I was given three pieces of information that I should have had prior to this visit.  Some of this information was from 2005 and a different doctor and some went even further back than this...  In my case I was very fortunate - I don't have anything serious going on at all, but how many others are walking around with the 'all clear' bell ringing happily in their ears while stuff is going wrong with them?  

Although this sounds like a bad day - it really has been a fantastic one.  I re-learned valuable lessons, gained a bit of belief in the medical profession, gained more trust in myself and Steven's results are good again!!  

What a day....... :)

love and light

Annie

Pretty normal....

Over that past few days and even weeks, I have noticed that life has smoothed out.  It surprises even me to think that we are now well into the PCR result waiting period and it hardly crosses my mind!  I never ever thought this was possible.  I know - give me another week or so of waiting and the wobbles will start again - but they are so much smaller and less intense than they have ever been. 

I  sit here today with relatively no worries re Steven's cml at all.  Not that I don't worry, it's just that it is much more in perspective these days.  When I talk to him on the phone I cannot help but do that 'robo-scan' thing, and at times when he sounds tired to me, I have to remind myself that above all, high above everything, this child of mine is normal.  He has normal stresses, normal late nights, normal long working hours and has the normal right to be tired, behave accordingly and need extra rest.  

So I am now in a training period of my life - I try to look at all of this in a clearer way.  There is nothing I can do, no amount of worrying or biting nails will change anything at all.  I keep up with what is going on in the cml world of progress, the new meds and things, but from a personal stand point - I just have to let it go the best I can.  And it's easy right now.

Steven is doing well on all fronts and he and Laura will be here again for dinner tomorrow night which will further put my mind at peace.  Oh I just KNOW that I am going to make a fool of myself at their wedding with my tears!  The camera has a full warranty so at least I don't need to worry about soaking that. :)   

Yes, in many ways Steven getting married brings stronger emotions than what I had when my girls each got married.  Unfortunately I was not able to let my worry and sadness and scareds go long enough to get fully emotionally involved with either their big days.  Lisa's wedding was within the first six months of the diagnosis.  It was held locally and Steven was there too - I remember looking at them standing together and just wanting to sit down and cry - thank goodness I could put the camera between me and facing it all right then.  

Of course I was happy for both Joleen and Lisa, excited and pleased that they had found their someone special, but I know I was not this deeply emotional about it - I did not know how to divide my mind at that time.  They are both special and very understanding young ladies and understand where I was back then.

It's going to be totally thrilling having all three of them together this time.....oh those photos that will be born!

And so I see that my mind wanders further and further from cml and onto the big and small things in life that keep life rolling on regardless of cml.  Is this the new normal?  I like it.

love and light

Annie

ps.  The gull just looked so happy, bright, expectant of good things and as if it is dancing on the currents of the wind.......

this is just beautiful....

http://www.youtube.com/watch?v=wnmbJzH93NU

Something is happening these days - more things make me cry. A happy cry.  It's when I see something awesome like this lady singing or a stunning photo or hear a story of love or caring, when I read a story of courage of hope - those things make me cry.  And it feels like pressure being let off and it seems as if it's helping keep my life on an even keel.

I find myself looking for these happy stories, the good things and the beautiful things in life, and after just one episode of watching only bad on the news, I am thrilled that there are still so many glorious things out there.

Back to the singing lady - she just made my week!

love and light

Annie

Inconvenient emotion

Oh, there is SO much good, so much happiness and so much to be thankful for.  Laura's wedding shower, a friend of my daughters wedding, Steven and Laura's new house, good pcr results, good cbc results, summer arriving, fruit trees blooming and on and on - beautifully so.  So why do I end up on my haunches in the middle of the card isle of Walmart creating puddles on the floor with my tears?

I went there with a happy purpose - two of them - to pick out a wedding shower card for Laura and a wedding card for a friend.......so being sad was the furtherest things from my mind.  These days have been good on all levels and especially seeing so many wonderful things going on in Steven's life.  And then I found just the right the card for Laura - it said just what I wanted it to.  And while I was reading it again for the second time with a smile in my heart and on my face, its wording reduced me, with no warning at all, to unstoppable tears.  It said:   "Forecasting showers of happiness.........(and inside) followed by a lifetime of love!"  And the tears flowed in a very inconvenient shower of emotion.

I know that Steven has a good full life ahead of him. I know that he is doing well.  I know that the Gleevec is doing its job.  I know that even if Gleevec stops working that there are other meds out there that will pick up the slack and get him back on track.  I know this deep down as well as right in front of me.  But - those tears would not stop.  I dont even know what it was that got them going.  One minute I was all happy and excited and really enjoying looking for cards and seeing the hope and continuance of life in the marriage of these young adults.......and then bam!  The punch was hard, well aimed and took my breath away......and then I was ok again.  It was as if something just clicked into place, I took a deep breath, the tears stopped and on I went.  God, I am so grateful for being able to do that - to be able to move on again, to know that for now my son is fine - as are my daughters.

Do I feel sorry for Steven?  No, I don't feel sorry for him.  If I did, that would be attaching something negative onto him when it is really not necessary.  Of course I am sorry that he has leukemia and that he has this extra burden to carry with him through his life.....  But when I look at the struggles of others, I know that life really is very very good.

Laura's wedding shower was lovely and the wedding I went to the next day had me very grateful that I could look at it all through the camera lens, shielding myself from some emotions.  Weddings make me cry and I just know that I am going to waste my time by putting on any make up for Steven and Laura's wedding!

Steven had his cbc and PCR drawn last week Thursday. The cbc came back all in the normal range and we are back in that waiting time for the PCR results.  No worries yet, no frillies yet.  Still a way to go and to be honest, I have not thought much about it. Not too long ago cml was like a river in the back of my mind at all times, always being heard, always running.  What a lovely discovery recently when I realized that nowadays cml pops in through a window in my mind, not often staying too long at all and much more of a stream than a river.  I am so thankful on so many levels. 

Hans wrote a lovely blog the other day - he describes cml so incredibly well...... The Black Koi...  I loved it, Hans!

It's lovely to see summer blooming again, the fruit trees are beautiful, they are laden with tiny new fruit, promising an enormous amount of fruit. The grass is growing at a speed that beats the lawnmower and after a mere two weeks, provides a jungle for the doglets.  Little birds are hatching in all the bird houses we have dotted all around the house and it's light in the morning when I wake up.....  All absolutely awesome.  

love and light

Annie

Beautiful!

My three chickens.  The pride and joy of my life.  U3 are just awesome and I love you more.

love and light

Mom

Balancing act..

And so yet another PCR screams up on us.  Are there only four in a year or is that the years are whizzing by so fast that they just seem to be piling up like ice on the frozen shore?  It just seems that every time I turn around, it's again time to order that box of goodies.  And then that wait.

It's a balancing act.  All of life is, but when a kid has cancer, it has a bit more of a sharp edge to it.  So like this dew drop on a tiny leaf, I feel as if life is tilting just a little again.  No big problem, no freaking, just a little tilt until we get those results that are going to be great, or even better, again.

In the meantime - Steven and Laura close on their house tomorrow and start moving in right away!  Wow - what it must be to buy a house at that age... I was much much older before having that opportunity.  It's totally wonderful to see him so excited, the boxes piled up in their apartment and ........just to think that one point I wondered if he would ever be able to do any of this - somehow that makes all this so much more special.  Right now they live literally  down the same road as we are on and many days I see him coming around the corner on his way home or leaving - always made me smile.  I really am going to miss that.  But I am so happy for them both.  And their wedding is only weeks away now too...

So, even with the little tilt, I am one really happy, blessed and fortunate mama....

love and light

Annie

Adrian's Legacy gets teeth!

Oh wow - this is awesome....... Remember Adrian from Baldy's Blog?  Well, these two video's below are of the most inspiring, strengthening and touching videos I have watched in a good long while.  Adrian so wanted to make a really big difference and.......... well, there is so much I could say, but it would definitely pale by comparison to what is said and shown in these short spots.... Please watch them.  

 

You can also click the title of this blog and it will take you to the Anthony Nolan Trust site for the "Register and be a Lifesaver" campaign that Kay sent me.

The strength and determination of Kay, Keith and Carrie and so many others, to keep Adrian's work going, is just beautiful...  There really are few things more awesome than people working together to really make a difference in such a beautiful way.  My deep, deep thanks go to everyone who keeps on going, keeps on making the world a better place, one donor at a time.

Kay - you guys are just amazing.

Love and light

Annie

Two years ago.....

Two years ago, this little sprite, my youngest grand daughter arrived to brighten our days... and she has done her job really well.  She is a pure delight, gorgeous, cute and just plain beautiful too......  Happy Birthday, McKenzie!

And tonight at her party her sisters, some friends and  family gathered together to celebrate her life I again realized how incredibly fortunate I am on so many levels.  

My mom came along with us which gave us a beautiful opportunity to get a few photos of four generations of girls! There are too few times these days that this sort of get together happens and we all took full advantage of it.  

And I watched as Steven and Laura arrived, eliciting screams of joy from the little girls who all rushed across for hugs from Uncle Steven and Aunty Laura.

And I was humbled by the oh so very deep feeling of thankfulness that Steven is doing so well.  I watched as he hugged Lisa and greeted everyone else, I watched that easy smile and laugh and Laura standing there right with him and I thanked everything that could be thanked.  And then did so again.

I remember the feelings of terror of three years ago when I wanted to cry at Lisa's wedding, not yet quite believing that he would be ok, that he would be around to be an uncle or that we would have these happy gatherings.  And so today I thanked all and everything that could be thanked again and settled into a lovely evening of celebrating so many things.

Cml is not foremost in my mind at all - but it's definitely there.  Steven works with us on Saturdays now which is wonderful.  I get to spend some time with this lovely young man, its good to see how quickly he is learning, but I also get to 'mama scan' him over a good few hours. And I have to admit that cml only enters my mind a few times during the days spent with him and it's definitely not a gut wrenching feeling anymore - rather, it's a feeling of being content with the way things are now and a wish that they stay in such a good place .  Nice :)

Here are some people that need you to send them good thoughts and prayers too......  

"Big D"  http://dancindianern.blogspot.com/ is another mom who's son, Nick, is going through some intense treatments right now - she has an incredible way of writing and sharing her feelings and fears, wishes and thoughts. 

"CC"  http://www.ccsjourney.blogspot.com/ She has just started heavy duty treatment for ALL.  She started off with CML and it moved on to ALL.  

Tyler http://bledsoebattle.blogspot.com is doing very well is is an inspiration for others on the transplant road! Keep going, Tyler and Mandy!  I follow you regularly and look forward to your 100 day mark and then the 1 year anniversary..... :)

Hans,  http://ftbwtw.spaces.live.com/blog/ Not only is he dealing with a fairly new cml diagnosis but they have just had a brand new addition in their family - Congrats to you all!

And Matt  http://hatefulblood.blogspot.com/  Another one responding well to Gleevec and just got wonderful 'greater than 3log reduction" results!  Awesome news.... 

So - cml is very much in my mind and I do spend a good amount of time still either reading the blogs of others, hoping and wishing for good news and then sporting happy smiles when that happens.  Others that are not doing so well, tug at my soul and help me balance my emotions and keep me in touch with reality, encouraging me to stay aware, awake and alert to this disease Steven has.

But I am also learning the importance of spreading my emotions a bit more evenly these days.  I am learning to really enjoy being involved, fully involved in things that have nothing to do with cml.  I am learning to look at daily happenings and just appreciate them for what they are and not see them tinged with leukemia.  It's a long process, but I know that I am really fortunate.  I think that slowly 'letting go' of the fear and just living for today is the best I can do.

It's only weeks before Steven and Laura move into their own house, and then just a few weeks later their wedding and the wonderful sounding honeymoon vacation.  So much good happening - so much that is so good.

So much to be thankful for.

love and light

Annie

Three years!

It's amazing what a difference three years have made......   This past week was that very dark week from hell for all of us three years ago when we first heard that Steven had leukemia, and on Friday 6th March 2009, it was the three year mark of the cml diagnosis. 

The first year I bought a cake - not quite sure what the heck I was doing or whether I was celebrating one year more of life or just trying to find a reason not to let the tears flow - one cannot cry with a cake in front of you!  The second year we had Steven and Laura over for supper and spoke mostly of other things, but gave cml a short "shot in the sun" with a toast to a good and happy and healthy two years, even though cml was in the front of my mind.  This year, the three year mark, we ambled back into town after a wonderful 6 weeks traveling through Baja Mexico, had pizza with Steven and Laura and cml barely featured at all, even in my mind!

We celebrated that this past week for them had been full of sending out invitations for their fast approaching wedding in May - it was also a fairly nervous week, but not because of cml, but because they had put an offer in on a house!  And two days before his diagnosis anniversary, the offer was accepted!  They are buying a house......... 

In three 'short' years, this child of mine has truly become a man.  Not because he is buying a house, not because he is getting married, not because he has leukemia - but because of how he has taken it all in his stride and bettered his life and his outlook despite, and probably because of his diagnosis - and, of course, because of  the lovely lady Laura!

It's been quite a ride, these three years.  The people we have met, the love and encouragement we have been given and the growth that has happened in so many ways.  

When we were first planning this trip away, I purposefully planned that we would be gone before his last pcr results came back in..... and it worked very well.  I know that nothing I can do will change what that result shows us and it was my way of actually living that knowledge.  Steven does this every day by getting on with all aspects of his life, doing everything he should and would be doing despite his diagnosis.

When I heard that his offer on the house had been accepted and I realized the timing of it, I cried a little.  Just a little - but it was a happy cry, one of wonder and thanks and appreciation and pride in these two young people who are moving on with their lives.  

What a difference three years have made in all of us..  and I am incredibly grateful and am so enjoying the peace in our lives right now.

love and light

Annie

Great Results - again!

Yes, yes, yes!

The results are great! 0.014%

I wrote so much stuff, as normal, and it all got lost when the internet connection dropped...  So let me just say that I am SO happy that this result is so stable, that Steven is dealing with it so well and that I can also relax and enjoy the trip ahead of us.....

Steven - Great stuff!  I hope you get over your cold/flu soon too!

Tyler and Mandy - I will check in as I can - may your news only get better and better!  :)

I will update mostly on the travel blog until we get back home sometime in March.

Steven - you are great!

love and light

Annie

seeking sunshine......

On Tuesday we are leaving home for about 6 weeks or so.....  It's cold in Tennessee, Steven is doing well and there is more than enough sunshine in Baja to share with us and the camera's are itching to show what they can do with beaches, whales, sunshine and open roads again.  So, we are heading that way.

Steven has his appointment on Thursday and hopefully his PCR results will be in by then too.  He promised that he would call me and let me know - Yes, you did, Steven!  :)  Actually, I threatened to turn around and beat it out of him if he doesn't......  And then I won't be a happy chappy - especially looking at the weather channel for next week.

Anyway - we are almost packed up, have already closed the shop and are really keen to get going.  It was up to me to decide when to leave and I purposefully put the departure date before Steven's PCR results come in.  I thought I might call on Monday to find out if they are in but then that would defeat the point of leaving early.  I really need to stand back a bit.  I know that Steven is quite capable and with Laura right there with him, I know that all will be just fine!  So I won't be calling for the results, but will wait for Steven to call and let me know.

No -I don't have any nails left.  But fortunately they grow back quickly.

This week also brought a simply beautiful email from Hans, a newly diagnosed guy with cml.  That was really very special, Hans - thank you!   He has such a good attitude towards his cml journey and I wish him only good test results and few side effects and many, many smiles :)

Also please keep all positive thoughts going for Tyler and Mandy - his transplant is Tuesday afternoon!  I will be thinking of you both as we trundle down the road...... may it go smoothly and with as few potholes in the road as possible.  Hats off to Dad the Donor too  :)

If you want to follow our travels - feel free to visit the link on the right - or click here to go to the blog I have put together just for this adventure.

Love and light

Annie

life

Peace and quiet, cold winter sky, reflections, growth and death, hope and color, differences and same-ness...... all in a picture. Life.

Life is a song ... sing it.
Life is a game ... play it.
Life is a challenge ... meet it.
Life is a dream ... realize it.
Life is a sacrifice ... offer it.
Life is love ... enjoy it.

One more.......

Ok - so I am certifiably insane now - two hours in the snow and wind, crouching over a birdbath that had a dark jacket over it to get a bit of height and the contrast effect.  My fingers, nose, teeth and toes all froze.  But look what I got!  :)

It even has a design in the very center of the flake.  It was truly an awesome couple of hours and quite fascinating just where my mind goes when I am so involved in this stuff that one normally cannot see.

A lovely day.

Love and light

Annie

Unique......

Talk about determination and hope and making any of my problems absolutely minor.......... watch this youtube video - I cant help but tearing up when I do and then thinking about everything with a deeper commitment to be more grateful for what I have.......

http://www.guzer.com/videos/are-you-going-to-finish-strong.php

And - along those lines... I know that every person, every situation is totally unique. Here are a few photos that I took of snowflakes earlier this week.  To me, its awesome to see how unique, special each and every one of them is.  Sadly, they start melting even before they hit the ground, or the tub of ice that I have prepared for them.  The snowflake lasts longer if it lands on ice and gives an interesting effect too...... I will post more sometime.

And when I see how incredibly fine and beautiful these individual flakes are, how far they have travelled and how they literally disappear in seconds, right in front of my eyes..... it makes me think of life.  The flakes I capture with the camera can always be looked at, wondered and admired and even mourned for disappearing - but it happened, I saw it, I admired it and wondered at its beauty.  It enriched my life, made me see things clearer and brought home to me just how delicate, precious and awesome life is.

People are like this - once we have known them, they will always be part of our lives, our souls and who we are.  Even if they die too young or way too soon - nothing can take their time away from you.  Even a stillborn baby affects that mom for life - it did for me.  And so a snowflake makes me think of people like Adrian and Dawn and so many others....... they were here, they impacted our lives, they got up!  (See video in the beginning of this post), they showed us how.  They are awesome.

They also make me think of people like Shane and Lea and Tyler and Hans and Steven and so many others that are also incredibly special, landing on the ice of life that is keeping them around longer.  

There is not a day that goes by that I am not incredibly grateful for the people in my life - the love and the light and the laughter and the life shown by so many people with issues way, way bigger than mine........... Thank you!

Love and light

Annie

Goodbye Dawn....

This is Dawn.  A beautiful young lady, bright, energetic, loving and so incredibly full of life.  She made a difference in so many people over many years, and deeply so this past year.  Her blog is brimming over with people who's life she has changed in some way or another..... go and read it - it's truly humbling.  http://www.goshdawnit.com/.

Today she died.   Leukemia was just too strong, too out of control and her body could just not take it any more.  

This breaks my heart to see yet another beautiful person taken by this disease. It sucks! I know there is nothing fair in life, nothing promised and nothing sure......but geez!  Look at her!  She fought so hard against leukemia, always with a smile and a glint in her eye.  I am so sad that she did not get better.  So sad.  My deepest condolences to all her family and friends - she is going to be sorely missed.

This also brings much closer to home the monster we are dealing with.  The fact that I have it so incredibly easy by comparison, what with Steven doing so well makes me tremendously grateful.  This is just one of the ripples that will forever flow from Dawn's life and affect mine.

Yesterday Steven's PCR kit arrived from Oregon and I noticed that my 'bitch factor' increased a fair bit as soon as that box landed on my desk.  I fight so hard against worrying, I don't want to worry and I know it changes nothing at all.  But it happens.  So I looked at it once more, and I am going to try not to give worry too much time this time.  Again.  

Last night when Steven came to pick up the kit, I found myself burbling out the instructions - again.  He gently said "I know, mom" and I was able to zip it up.  He does know, and he does it right every time, yet every time I find myself telling him again.  Aaaaaarggghhhh!  But, as I said to him today - one day he will have kids and then he will understand why I worry about things like I do.  He just looked at me with a smile in his eyes and said not to worry about it.  I cannot express to him enough my thanks that he deals with both the leukemia and me in such an incredible way..... 

He had his CBC today as well and I have to share them here.........they are almost perfect!

WBC 5.8  

LY 22.9

MO 6.6

GR 70.5

LY# 1.3

MO# 0.4

GR# 4.1

RBC 4.09

HGB 13.3

HCT 38.9

MCV 95.2

MCH 32.6

MCHC 34.3

RDW 13.4

PLT 255.0

MPV 6.3   This is the only one that is slightly low, and only very slightly at that.  It feels so good to type all these numbers and they are all good!  PCR numbers next, please!  :)

Steven also looked so relaxed, at ease, happy and well..............totally ok today!  And I realized again just how much my 'relaxedness' depends on him doing well.  I hope that he never feels that he must protect me from how he is feeling regarding the cml, and I know that he relaxes when I am relaxed too.

And I am,  really I am.  Even with the utter tragedy of the world losing Dawn today, I am relaxed with my life.  I know I cannot change this in his life and I cannot change the effects it has in mine.  The only thing I can change is how we deal with it...... Oh how I am now laughing!  I think if I go back three months and the three months before that - before each and every pcr test I type the same sort of stuff.  Ok - so this time I will try even harder.

And to show how confident I am - and no, I am NOT daring the Universe! - we have planned a vacation, leaving here at the end of January.  We are driving across country, we will stop off to visit my daughter Joleen and her husband at the Marine Base in Twentynine Palms in the California desert, and then down to Baja Sur....  We are hoping to spend a good month away this time - much of it on the beaches in tropical temperatures down in the south end of Baja.  The whales will be there, the turtles hatching, the sun will be shining and the beaches filled with shells.  My camera's are dancing already!

This is how I need to live my life.  If I sit and worry and not live for fear of what might happen, what would I be doing to my children?  What message would I be giving them?  Yes it hurts when leukemia claims another life and it grabs me by the throat and makes me angry and sad, but it also drills into me deeper the need to really live life as well as I can.  And in this way maybe I will instill the same determination into my three kids - whether they live to only 60 years old or all the way to 90!  May they see that if their 'old ma' can do this, they can too.

To Dawn's family.  The news today was devastating - I had so many hopes that Dawn would be 

up and about and flashing that smile around again.  I hope you know that the ripples she sent out have already affected my life and through that, the lives of others that I share my growth with.  Thank you.  I am deeply sad for you all.

Love and light

Annie

Make the year a little brighter....

This picture made me think about how life is.  It's full of reflection, chaos in places and calm and quiet in others.  There are parts in sunshine and others in deep shadow.  There are reactions to actions that we often don't see without looking carefully and closely and so often this all happens in the short time it takes to throw a handful of stones - only seconds. And once the water calms down again, it will look all the same - but its not.  There are a few more heavy stones in this pond.   This is life.

Something really touched my heart and soul recently....... You know how Christmas and the new year makes us thankful for so much, pleased that we got through another year and also brings to mind the too many people that are no longer with us?  Well..... I know that the support boards and the people who walked with me through the first years of Steven's diagnosis literally saved my sanity.   A good few of them are firm friends now but even those that have moved on, like I have in so many ways, and with whom I don't have regular contact, well, they were and always will be a very big part of my life and who I am now.

So, what happens when you have lots and lots of contact, help, handholding, support from the boards and then the person you are caring for passes away?  Not only does one lose that person, but the support - your 'other life' - disappears too!  This is what happened recently...  I had emailed someone who had lost her husband to leukemia not too long ago and she mentioned that I was the first CML friend that she had heard from in ages!  That really made me sad.  Not angry at all - just sad. 

People that have lost someone, don't need to lose more than they already have, it won't upset them to hear from the people who were there before that person died, they want to hear that others still think of the person that has gone, they need the contact - they need to taper off from the contact like we all do in some way.   I know that if all that help, the support and the love shown to me from so many people just stopped, I know that that would be like losing even more.  The emptiness must be big enough without this loss too.

I don't know that I am saying it right - but I do think that maybe we should all just keep in contact with those that we got to know so well through common fear and hope, just that little bit longer, until they are ready to let go and move on.  Maybe??  

Maybe now is a good time to email someone of last year that lost someone - to wish them a gentle year and to let you know that you still think of them and the person they lost.  Email, call or write to someone that you have been in contact with before, someone that helped you or who you were there to support - tell them what it meant or means - let them know they still count, even if you don't have regular contact.

Sometimes it's not easy to talk to someone who has lost someone they love.  It's not easy to know what to say and we are scared of hurting them or making them cry.  But I don't think that letting them know something you remember, letting them know you still care, laughing at a common memory or even sharing a pain - remembering the person that has died, I don't think this would hurt that person.  I think not contacting would hurt more.   Not talking about the person that has died, makes them 'more gone' if thats possible and makes one more isolated in the pain of getting through the many 'firsts' of the new life without them.

Sadly, we all know someone that can do with this type of contact.... lets make this year a little brighter...

with love and light

and thanks - so many thanks!

Annie

Ending the year right.......

This past year has made me more aware of so many things.  These past few years since Steven was diagnosed with cml, have done this.  It's hard to believe that in a mere two months and some change, we would have been on this cml road for three years already!  It's amazing how many important things I have learned about life in such a short space of time.  It's weird how emotional I have become - although I know it's probably got something to do with my age too.......but lets not go there now  :)  It's a good emotional though - it does not floor me, does not bring me down, but helps me keep the important things in life, in focus and is ok as long as the box of tissues is close by!

I want to let 2008 go with some really important thoughts and ideals to keep me going into the new year.....a year that I just insist is going to be a really great one.

Here is a video of a  young lady recovering from her bone marrow transplant - quite an incredible lady and her family.  Yup - I cried watching this.  Tears of hope and sadness too that they had to go through this.  But look at everything they have achieved!  Michelle and her family is amazing.  Anyone in her area - join the registry!

http://www.youtube.com/watch?v=CGhAlICpU60.

And here is another trial for the cure of cml, the killing of the sleeper cells, and a talk by cml specialist, Dr Ravi Bhatia.  Here he explains why he believes that cml is not cured by Gleevec, Nilotinib or Dasatinib.  It's interesting 

and so positive.  It's just awesome to listen to these amazing people.  These doctors and scientists who are working so hard to find a cure, or to figure out cml - they are hero's, my hero's!

http://www.patientpower.info/dailydosedetails.asp?dateid=2008-12-17.

And Adrian - If you have not read his blog - do so!  He was an incredible inspiration to people all over the world - still is....  He changed things, big things and really made a difference in this world.  Adrian's Army and his parents, Kay and Keith are keeping his work going - see if you can get involved in some way.  

Lea has fought against cml hard and is now a year past transplant and went skiing this vacation!  It's fantastic that she has shared her journey with everyone - it really gives me hope and there is absolutely nothing like reading such an incredible success story!  Both her and Shane, another transplantee, hardly ever update their blogs anymore which is absolutely wonderful - no news is definitely good news in both cases and its so right that they get on with living their lives and have less and less to write about regarding cml.  It's stories like these that have literally lit up my life this past year.

Little Bianca and her family had to adjust the celebrating of Christmas because of treatments and are in a small bump in the road right now, but they keep on sharing smiles and the good things in life - where do these people get the strength from?

And Dawn - oh boy, she is fighting so flipping hard right now.  Go to her site - donate blood, get on the registry, send her and Mike and their families a message - I want so badly for her to be ok!

Oh there are too many that are not around to see this year come to an end, too many. But each one has left so many with so muc

h love and energy, the will to do something to change life for others and a new depth of character that can only come from a really deep worry and pain.

There are so many people that I watch and follow on their determined walk with cancer  - and they have taught me so much.  Somehow this past year seems more intense and filled with depth than the year before.

I wish for everyone that this coming year is one where we can all make a difference.  Sometimes we think it has to be something big - but that's not the case.  A note, a flower, a smile or just listening without interrupting can make all the difference in someone's life.  Think of something and just go ahead and enjoy doing it!  Be a light to or for someone.......... even if it is for just a minute...

In many ways I am happy to leave this year behind me, but then I think of those that won't be in the new year and I don't know if I am ready for another year yet, don't know that I am ready to let the year go and start a new one.  But - there is no option, as we all know.........so.....

May this be a good year, a positive year, a year filed with an extra dose of love and warmth and the opportunity to make a difference somewhere, somehow.

And thanks, so many thanks......

love and light

Annie

Christmas thoughts....

The best thing about Christmas for me is that it gives us another chance to get together, to let those close to us know that we love them and to do something special for others.  And so it was again this year.  Hours filled with hugs, smiles, caring and laughter.  It's not in the gifts at all - its in the caring and the care taken and the light in the kids eyes and the magic.  

It's in the love........it's in the magic of a tree all lit up in a darkened room, in the nail biting of the excited little girls as they waited for the gifts to be handed out.... It's in the wonder.

For me, Christmas is the end of the year in so many ways.....it's when I think about the year that is past, the so many good things that have happened, the special people and the incredible amount of love that has been spread around in another year...  I think about the people that are struggling with the loss of their friends and family and those still struggling to hang in there - even they give so much love.  It's just amazing how it sometimes seems that those hurting the most, those struggling the most or those that have lost the most seem to be able to comfort and deal out love in incredible doses.

And these days I find that I cry at everything!  I cry at a good story, at a sad story, a happy ending, at the end of a good evening and sometimes just because.....  Maybe I should just sit and howl it all out - think that feeling would go away?  Hmmmmm

2009.  What do I want for 2009?   I don't know that I can answer that question right now.  I want so much for so many, but how to put that all in words...... I have learned to be very careful about what I ask for so I think I will just let this one lay there for a while before I put it in actual words.

Health - may you all have the best possible health.  And Dawn and Tyler - so many special, special wishes and hopes and thoughts heading your way.

Love and light

Annie

it's time.....

Bye Bye RoadrunnersUSA.com

Today was sort of sad in a way, but also the right thing and the right timing.  Today I decided to let go the website I put together right after Steven was diagnosed.  We did this fundraiser - somewhere around 11 000 miles from Tennessee to Alaska and back, to try to raise money for the Leukemia and Lymphoma Society.  We had an incredible time, the people we met are still embedded deeply in my heart and its a trip I will never forget for so many reasons.  

But, it's time to let the site go.  Those very intense, terrifying days have passed and now my days are more like those beautiful colored pieces of glass one finds on the beach sometimes, with rounded edges and the sun making them glint.  I am ok in letting this go now, but am putting it on this blog so that I have a record of what it looked like.

In no way was it a professional website but it was my first.  And I guess the first of anything always holds a special place in one's heart - this one especially so.

Those were incredible days - terrifying, alive and so amazingly full of love, so intense, so aware and deep..  I wonder if there is a way to be so alive without some horrible diagnosis getting there first?  

And once more, Thank You to everyone that was there for us in those days as well as these.  Penny was such a part of that journey - I miss her.  I have so many wonderful memories from that time... and a deep and wonderful gratitude.

Love and Light

Annie

oh well - only half of it will fit into the blog - but thats ok....it's enough to remind me  :)

This journey is in honor of my son, Steven.  We are so tremendously proud of you. Love - Mom and Frank     On the Road to Cure Leukemia 15000 miles.  Two months on the road. Ride the Road with us!   Our aim on this fundraising journey is to raise as much money for the research and development of new treatments for leukemia and other blood cancers, as well as to improve the quality of life for cancer patients and their families.      All proceeds go toward patient services, blood cancer research and the ever-ongoing search for cures and better treatments for all blood cancers, including leukemia, lymphoma, Hodgkin's and multiple myeloma. The research dollars poured into these diseases also benefits other cancers, such as breast cancer, prostate cancer, GIST and others.   Together we CAN make a difference Together we WILL make a difference.   You can donate at any time during the year, not just during this journey.   Make checks payable to: Leukemia & Lymphoma Society Send donations to:  RoadRunnersUSA -  8794 Dayton Pike - Soddy Daisy - TN - 37379 or You can donate online through one of the links on this site; or You can pledge per mile traveled – our aim is 15 000 miles email me   If you see us along the road, hand us your donations -we will forward it to The Leukemia & Lymphoma Society in honor of all those battling with blood disease.   ALL monies collected goes to The Leukemia & Lymphoma Soc.   You can email us at Livingwithcml@yahoo.com Please understand that we won't always have a connection, but I will answer you as soon as I can. (please: no forwards, pictures attachments or junk mail)   Thank You!         Approximate route we will be traveling August and September 2006     We will leave from Chattanooga, Tennessee, at the end of July 2006, head up to Glacier Park, over into Canada and cross the Icefield Parkway. Then we head almost directly east into Edmonton Alberta, to meet Penny! She is a very special lady who is battling with lung cancer and who has had such an incredibly positive influence in my life. Together we have created www.penniesforcancer.com where artists from around the world have donated their artwork for you to download in exchange for a donation to the Leukemia Society or the Alberta Cancer Foundation.  Please visit the above sites and read more about our stories and determination to help fight cancer.   After meeting Penny, we will head up to the Alcan Highway and into Fairbanks, Alaska.  We want to travel down to Anchorage, Seward and Juneau before heading into Seattle, Washington.  Hopefully along the way we will be privileged to see the Northen Lights - a long time dream for us both.  In Seattle we will meet Debbie, a friend and a tremendous support to me, who's 19 year old daughter also has CML.This friendship is yet another example of something wonderful being born from something as scary as cancer.   Steven has an appointment with Dr Druker in Portland, Oregon in the first week of September.  Gleevec was developed by Novartis in collaboration with Brian Druker, M.D., director of the OHSU Cancer Institute Leukemia Center.  Gleevec is the drug that is literally saving my son's life. Both Steven and Laura will fly out for the appointment. We will meet up with them in Oregon in the motorhome and hopefully have at  least a few days on the beach with them both before they head back home to college and work.   After that we will head south along the coast for a way, then inland and begin the journey home again.  Slowly meandering all along the south western states still putting the important "Pay Forward" message out as much as possible along the way.  We will be walking in the Leukemia & Lymphoma Society's Light the Night walk somewhere in the country.  Where we walk will depend on where we are at that stage of the journey and the dates of the walk in that area.   This adventure is for all those with CML, their families and the people that care so much for them.  You have laid the groundwork for the incredible progress in dealing with leukemia.  You have all taught me so much, given me so much hope and helped keep me sane.   To the doctors that are working so hard on better treatment and the ultimate cure: Thank you - thank you SO much!   This ride is for you all, with tremendous thanks!       This is my son, Steven and Laura. (click here to be taken to his blogsite)   He is the main reason we are so motivated to make this project a roaring success.  These two young people are of the many children and young adults that should be dealing with life - not life and cancer.  It is in the hope of a cure for him and many others out there that we want to carry the "Pay Forward" idea across country.    A wonderful lady who ran in the Alaska half Marathon in 2005, told me an incredibly real part of her story.  She has CML and was running as part of the Leukemia & Lymphoma Society's Team In Training raising money for the fight against this disease.  Coming up to the half way mark, she looked up and saw a large group of people in purple, the Team in Training colors, running towards her.  Her eyes teared up as she realised that it was these people that helped her to have a life, helped the progress towards today and tomorrow's treatments of leukemia.   These are just some of the people who have a direct hand in Steven's life now.    How do we thank and honor them?  Do what they did!  Pay Forward....   Please have a direct hand in someone's ability to live.   Pay Forward by visiting one of the links on this page and donating in honor of all those who have fought and who are fighting this disease - in honor of those who are laying the foundation for the future survival of loved ones and for the cure of blood diseases.   All donations, whether through this website, checks or cash handed to us will go directly to The Leukemia & Lymphoma Society.  This is the only way I know how to help my son now - by raising money to further research for a cure.   Thank you!       Diaries of previous adventures - by Annie Baggett

Closeup..........

When I looked outside this morning, everything was coated with a crispy white frost, making beautiful little colored sparkles all over the garden as the sun came around the corners and over the trees and lit them up.

Of course I grabbed my camera and headed outside. I wish I had discovered this passion for seeing things close up, many years ago...... I don't find it so easy to get my nose 6 inches off the ground in the middle of the lawn and hang on to any sort of dignity at all! Thank goodness for the fence around the yard, but there is one place people can see through a different fence and I saw one person kind of stutter on their brakes when she saw me stretched out on the frozen pathway at 8.30am. All day long I wondered if she thought I had fallen or if she chuckled at my craziness... ah well.

I got some really lovely photos - but what is really fascinating to me are the thoughts that waft through my brain as I try to get 'The One' perfect picture. Trying to get so close up is not always easy as the depth of field is very narrow - meaning that only very little stays in focus at a time. As I move the camera back and forwards in tiny increments, different parts of what I am looking at become either in clearer or fade into fuzziness.. sometimes creating a totally different picture from the previous one.

And I started thinking.........when we are so close to someone who is working hard at kicking cancer, or any other serious issue, in the teeth - so much else of life gets fuzzy and out of focus. It takes just a little adjustment to see a different part of the picture, to get a different take on the whole. And also in life, sometime standing back or moving in makes it all totally different. This is what makes it so difficult sometimes to really help someone going through tough times. None of us ever stand in exactly the same place as another while looking at the same thing - we all see it from at least a slightly different angle.

When I go for a wide shot with the camera, trying to get a whole leaf or blade of grass into the same photograph, the smaller things go unnoticed. Look at these crystals, look at how they are all made - each one is so precious, so special and so unique. I think of all the years when I never even thought about what frost looks like! When I looked at that lawn after seeing the pictures - it's all so different - its beautiful in a very different way. I think about the wonder of those crystals - see how they don't close on the top? In each crystal the circle at the top is incomplete! Why, I wonder. But for now, I am just enjoying being able to see something I had not before.

It's very much like this since cancer entered our lives. I have seen so many more aspects of life, what's important, what's not. I have learned to look deeper than just the surface of people, to see that everyone has a story that is filled with little, precious, incredible crystals, some in focus today, some in focus tomorrow..... I know this sounds all soppy but it's so true. I have met people who brighten my days just like the sunshine on those gems on the grass....and all of them have put some part of my big picture into focus at some time along the way

I read something yesterday and it's been playing through my mind....... "Does the person create the journey.... or does the journey create the person?"  Interesting thought, I thought. :)

Today Steven worked with us again in the shop. It's really wonderful to have him hanging around for a good few hours on the weekend and interesting to see how fast he learns and just how much he does remember, even with the Gleevec. Today he said a few times that he did not know why he was so tired. He only arrived around lunchtime which was great 'cause I knew he had a relaxing sleep in and a lazy morning - always good for the soul. He had something to eat before he came, but also commented just before we closed at 5pm, that it was strange that he was not hungry yet.

Well. Yes. And no - I did not go into worry mode, but I have to admit that my antennae went up. Why would he be tired? Gleevec not working anymore? Why would he not be hungry? Spleen getting bigger again? Sigh - I know that the chances of this are probably very small and really nothing to worry about at all, but it does throw me back to those days when I did not notice this stuff, or did not think it was important. Pre cancer days. And I am much more aware these days.

Anyway - I don't want Steven to become too sensitive to every ache and pain and day of tiredness or such - but I did call him afterwards and mentioned that he should just not blow off these feelings, but keep tabs on them and tell me if they are still there next week. He assured me that he would. I know that I probably don't even need to mention it to him, but ............well, I am mama.

Anyway - here are the photos of today. And again - it's fascinating to me that natural things in nature are so close to my experiences these days...

love and light

Annie

Time goes by..

So many times I have fretted and literally wrung my hands, wondering why people who are doing well with cml don't write about it!  Tell others the good news that life goes on, that things do fit well into that 'new normal' and put my mind at rest......  Well, now I see why.  When things go well, life once again morphs into.......well, life.  

I asked Steven just the other day how he is doing on the cml front and he says that he is just fine - no side effects, no cramping, no pains, no - nothing - just life as he wants to live it!  How amazing is that?  So, when he is doing so well, what do I have to say?  I really have no news on the cml side of things at all.

It's a really good feeling to feel human again, to be able to breathe easier, not to have the level of worry of before.  Reading so many other blogs has given me the knowledge that no matter what comes our way- we will deal with it, one way or another.  It's interesting how easily I cry at the troubled times of some of those people I am following...  Sadly, Erica passed away on December 4th after battling with leukemia.  Dawn is having a really rough time of it lately too and Tyler is not yet quite off the bumpy road either.  I hate this disease!  I hate it.....

Being in the 'cml community' makes me so incredibly grateful for the life we have, the opportunities, the goals we can set and the dreams we can still dream.  In many ways it makes me excited about life - its given me a deeper way of looking at life with a lot more appreciation of the little things too.

Being is such a good place right now, I find that my 'creative' side is wanting to come out and play again.  It's been like this for a while now, but lately I have this need to do something fun, nice, exciting.  I have my camera within reach at any given time and have even ordered that awesome new 21 megapixel Canon!  Ooooh - this is really exciting!  It will still be about 4 weeks before it arrives, but I am looking forward to its arrival in the same sort of way I looked forward to the birth of my kids :)  Maybe I will even start selling some of my photos.... :)

I described it to someone this way - its like being a flower, all curled up for a good long while, then carefully letting one petal out to taste the sun - it reports back good stuff, then the next goes out and so on..........like this....

I know that all this good stuff can change in one simple blood test, but I cannot look at life like that anymore.  I cannot sit and wait for the bad stuff - it might never come and what a shame all that wasted time would be!  Besides, I have a good feeling that Steven would just hate for me to do that - I know he likes seeing me upbeat and excited about life - I am sure it assures him on a deep level that all is well with him too :)

I hope that my re-excitement about life shows someone else that life really does get better, that it can even out and be better than the old normal - well, in my circumstances, it did, and not a day goes by that I am not deeply grateful - for everything.

Here is another photo - this one is the nose of one of our doglets - and when I look at it it makes me think that I am sniffing the wind, and good things are out there......  I wish this for everyone.

love and light

Annie

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.

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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.

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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

:)

Light, with love

 

Listen to Dr Druker!

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

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

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

He is one awesome man

love and light

Annie 

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

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

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

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

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

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

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

love and light

Annie

 

A very sad day...RIP Adrian

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

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

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

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

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

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

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

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

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

Love and light

A double dose to all that love him

Annie

xxxxx

Hello's and goodbyes...

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

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

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

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

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

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

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

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

Love and light

Annie

The results are in.......

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

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

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

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

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

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

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

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

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

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

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

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

May it stay that way.  Please.

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

Love and light

Annie

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

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

Busy days

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

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

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

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

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

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

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

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

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

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

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

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

Ok - thats my burbling for the day.

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

bouncing days

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

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

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

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

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

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

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

One little ant........

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

love and light
Annie

Living your Dash.....

“How Do You Live Your Dash?”

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

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

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

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

(thanks Kay)

love and light
Annie

Feeling creative.......

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

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

Love and light

Annie

Donors..........

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

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

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

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

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

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

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

love and light, hope and thanks
Annie

Ok, I give up....

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

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

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

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

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

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

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

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

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

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

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

Keeping an eye....

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

Rambling thoughts.....

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

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

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

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

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

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


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

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

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

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

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

Love and light

and a big hug for you, Kay

Annie

Sophie with a new look

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

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

Life's bugs.....

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

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

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

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

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

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

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

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

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

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

love and light
Annie

Still here....

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

love and light

Annie

Running deep..

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

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

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

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

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

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

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

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

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

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

Annie
Xxxxx

Ringing in the good times......

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

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

I am so tremendously proud of both of you!

love and light - tons of it!
Annie

Caitlyn Raymond International Registry

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

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

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

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

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

love and light

Annie

ps - REGISTER!

This week

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

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

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

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

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

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

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

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

love and light

Annie

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

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

Treasuring moments

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

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

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

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

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

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

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

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

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

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

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


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


Annie

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

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

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

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

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

Love and light
Annie

Guess what...

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

Blue Bird for you......

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

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

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

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

love and light
Annie

waiting, waiting, waiting....

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

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

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

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

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

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

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

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

Love and light
Annie

Who's in charge?

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

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

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

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

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

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

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

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

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

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

love and light
Annie

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

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

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

gentler days.....

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

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

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

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

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

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

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

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

love and light

Defining times

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

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

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

The normal experiences, feelings and frustrations of everyday, take on a very different depth in relation to Steven. I don't think there are the right words to explain it, but I do know that I cannot shake th