Dealing with it.....

I guess the best thing about not updating the blog is that there really is nothing going on that finds me desperately pounding on the keyboard late at night. But there have been many general thoughts swirling through my mind over the past weeks.

A good friend of mine was recently diagnosed with cancer and another died from cancer just last weekend and it makes me so sad, so incredibly sad. It's not only the loss of my friend from Florida that makes me sad, but that another person has now started down a road where everything changes, all the way to the words, vocabulary, abbreviations and even the disliking/liking of a certain shade of pink!

Almut, my Florida friend, wanted to be quiet, to withdraw while she learned to deal with her diagnosis. She needed to turn her strength inwards and hoped so hard to get better that by the time she went to hospice, we could not say goodbye - she could not speak on the phone anymore. I hope she knows that she brightened my days, made me laugh, made me mad, made me think about so many things and that I will always remember her with a smile.

And all of this brings me to realize (again - duh!) that there is nothing I can do about living or dying, there is nothing I can do that will stop any of this happening and it seems to be happening more and more. It was just a very few years ago that I could literally count the people that were important in my life that I knew who had died, on the fingers on one hand. Now it's all around me and it's all too regular that the tears flow from the death of someone else.

Yes, it's difficult - but even more so, its strengthened me. It's opened my eyes and made me see the absolute importance of living each day the very best we can. Not to waste too many moments in life - there just are not that many, after all. It's made me free to cry with joy at a wonderful story of success, of someone getting through treatment and getting on with life. It's made me see that no matter what I do, say or feel, someone else will die, will be diagnosed and will walk the long road of cancer.

It's made me see the importance of telling those close to you how you enjoy their company, their laughter, the ways they lighten my load and brighten my days. It's made me love more openly and laugh all the way from my toes. It makes me realize on a daily basis, just how fortunate I am on so very many levels.

This is life. Does that sound hard? Probably, but it is..... we cannot have life without death, no matter how much it hurts. I consider myself really, really fortunate...... my whole family is still here, Steven is doing well on Gleevec and I am able to step back and "take a break" from cancer, unlike all those dealing with it.

Of course I worry about Steven, but its nothing like it was even 2 years ago. Of course I am deeply affected by the loss of my friends and the children of the other moms I talk to.... I am also affected by the great strength of everyone I have met dealing with cancer, whether they are still here or not. It literally brightens my day to hear the great results of so many people, by their successes and their strength in getting themselves restarted in their lives and all the things they go through to get through each day... and all this fills me with the ability to live my life on a much deeper level than I ever imagined.

And so........in just a few days time, we leave for South America for one fantastic vacation and I will not be posting here for about a month. To follow our trip, click here: http://www.GalapagoBaggs.blogspot.com. So many of you will be coming with me in my heart and my mind and I will send many prayers, wishes and happy vibes out over the ocean for you all.

love and light

Annie

Going to be Grannie Annie again :)

My daughter is expecting another child later this year and to help keep track of the days, I have put a widget on the right side of this blog that will count down the days till his arrival.  Yup, it's a boy this time..... poor thing in a house full of girls!  And Lisa and Brian have decided to name him Steven William....  Awesome, hey?

Anyway - that's the news for tonight.

love and light

Annie

like a pistol...

The results are 0.22% on the International Scale. This is slightly higher than the last pcr, but lower than this time last year - so all is good :) Steven's doctor recommended no change at all so now its time to kick back, relax and just enjoy life with this worry, once again, gone for now.

It felt like an extraordinarily long wait this time and the time is almost here again to order that kit from OHSU again. Sometimes I just get so tired of it - and then the moment passes and I realize just how incredibly lucky, fortunate, blessed I am.

Steven is looking good, sounding good, and is going to gym on a regular basis too. His life is everything it could have been without cml. I know that on many levels he has grown beyond what he would have if he did not have leukemia and for this I am grateful, even though obviously I wish he did not have it. Our lives are all so good despite, and perhaps because of, cml as part of it.

So now I can get ready for our trip next month with a lighter heart. I realize how much depends on those results every few months. It's not like we put our life on hold, but the "what if" factor is definitely more often visited when it' waiting time.

Thanks to everyone who waits with me, I know I am not alone in wanting those results and it really does count a lot to know that you are right here with me.

Love and light

Annie

Tomorrow.........

Tomorrow the looooooooooong wait will be over.... breathe in, breathe out....

Goodbye Nick......

I am so sad today - Nick passed away yesterday. His mom, Diane, writes a beautiful but heart rending blog that so many times has made me laugh and cry at the same time. Today it was just tears as I read her words from late last night. Nick is finally free. But his death has obviously left a devastating path...

I cannot begin to even imagine the pain they are all going through and will be going through for a very long time. Just thinking about thinking about that makes me want to bawl all over again.

Diane, I am so incredibly sorry that you no longer have Nick where you can reach out and hold him, talk to him and see his smile and hear his voice. I am so sorry that you have this horrendous pain to deal with. I am so sorry that there is not a single thing anyone can do or say that will help make your pain go away or become less. There is no other mom that is going through exactly what you are going through right now and that must be an awfully lonely place in so many ways.  There are so many of us who have been touched by your words and your battle and of course, Nick, that are holding you and your shattered heart in our hearts.

My deepest sympathies go to you and your family and to Kate.

So many things go through my mind when I hear sad news like today. Although Nick was leukemia free when he died, it is still because of the disease that he died..... and that makes me angry, sad and very very scared. I do know that each and every one of us is going to die and I know that it can happen for many different reasons and at any age, but - well, I don't like the fact that my eldest child has an elevated chance of it happening sooner because of this disease. This is also not quite accurate anymore what with Gleevec and the other meds and advances in treating cml....... but that does not really help much on days like this. 

There is a program on tv now with Niel Diamond and all his lovely old songs and it takes me back, waaaaay back, to days where everything was so simple, nothing could hurt us, we were invincible and well stuff like cancer just did not feature in our lives.  Oh how I miss those days on a day like today.

And earlier on this morning I went to see my doc (something really minor) and as I walked up to the building doors, I realized that I was only one arms length away from Steven's doctor - and his results!!  My heart actually skipped a beat.  Oh boy, you should have heard the high speed conversations - both sides - that went on in my head in a matter of seconds!  But, I walked past with only one small stumble... and a whole lot more temptation than I had been handed in many years.  When I came out again I knew that I had better be distracted or the temptation might just get too much, so I called my sister - thanks Katie!  And again I walked past that door less than 6 feet away.  

I have to leave this to Steven.  I have to.  I do have permission to get his results, but that would be undermining him, especially if I had got those results without asking him specifically.  And tomorrow he will be working with us again all day long..

I am SO incredibly fortunate.  Tears running down my face again for Nick and his family and I am worried about being able to control myself while I have my son all day long!?  It's difficult to try to understand why I am so broken up about someone I never met, but its real, its scary and I feel so much for his mom without even coming close to understanding her pain.

I think today's world has very little to do with understanding much of anything.... I think it's more and more about just living with every fiber that one has for as long as we can and then to just believe that there is something more afterwards....  Trying to understand seems to bring about more questions, more sadness and more unknowns and definitely does nothing for peace of mind at all.

Nick, may you dance in the freedom from pain and hospital rooms, may you see everything you still want to see and may you know how much you were and are loved by so many..... You are definitely missed, even by someone who never knew you.

A special dose of love and light to Nick's family and friends - and especially Diane.

Annie

I did it!

I did it............ success!  Not a word, not a hint..........  It was lovely having Steven with us all day, but boy it was long sometimes with those conversations in my head and the subtle taste of blood in my mouth as I literally bit my tongue later this afternoon....  but it feels so good to have succeeded...

Phew

love and light

Annie

Hanging in there........

No PCR results yet......

This time around I am leaving it up to Steven to call.  Up to now I have always jumped in there first, taking that away from him, keen to get those results as soon as possible.  This time I have decided to leave it in his hands.  Totally.  Aaaaarrrrggghhhh.  His doctor's appointment is mid August - I dont even know the exact date!  I will not ask him to call, will not remind him to call, will not even HINT that he should/could do either..  

The conversations in my head get very interesting at times..... time and time again a little voice almost convinces me that its ok to let slip in some 'innocent' way, to remind him to call, I have had very 'casual' conversations in my head with Laura, trying to find out if he will call or just wait till his appointment...... and so far, I have not yet given in.  One side of me would do anything to get those results and the other side will do anything plus more to be able to leave it up to him.   

He is working with us again tomorrow and its going to be a long day with much tongue and cheek biting to stop that question....but I am determined! Wish me luck!

Drop in on Nick and send him some good healing vibes and a note as well - he is fighting hard against many things right now and can do with all the well wishes possible - all of them can.

Have a great weekend

love and light

Annie

waiting thoughts and plans......

So PCR blood has been drawn for this test, it's been sent off and ...........well..... I am not 'freaky' at all. Yet. :) Steven's cbc came back as close to perfect as one can get and for some reason this PCR blood sample has traveled across country this time with hardly a thought from me. It's soooooooooooo good!

Steven looks great and his sense of humor is firmly in place and I realize just how much of a help this is to me - to see how good he is all round. It's like this picture, which is of the tip of a leaf of an insect eating plant.......... see how most of those little sticky bubbles stand by themselves? And then on the right, there are two sharing the load..... I see this so often in the close up photos I take. It's nature to give a helping hand and sometimes we need it when everything around us seems so right, so normal and there is no trauma around, sometimes it's right then that someone needs that sharing of the load..... Anyway - that was my thought as I found these sticky globs in my camera lens.

My one son in law is headed to Afghanistan in October, and the other son in law is heading off to boot camp mid September.... Oh boy, it's times like this that I am glad that Steven won't be joining the armed forces! Yes, that sounds selfish but he is already fighting a huge battle of his own - he deals with it every day and ........ well, I am glad he is not also in this branch of the armed forces! Hats off and great respect and love to both my sons headed that way. Be safe, guys! Stay strong, my girls - they will be back. Everyone has things and battles to overcome and each is no less important than the other....I notice this more and more in everyday life.

I think that planning a trip is about the best way for me to be able to push those pcr results, and other life issues, aside - for a while, at least....... and this time is no different. Maybe we should just plan a trip away for every pcr test done?! Well, this one is a major one and I am so excited that I can hardly sleep! We are off to the Galapagos Islands, the Amazon Jungle and Machu Picchu........... and we leave in the last week of September - a mere 6 weeks away.

At first I wanted to wait till Steven's results were in, but that would be letting cml rule my life in a way that I don't like. So, with a niggle that still won't go away, but a determination to live every moment of my life and not give this leukemia in my son more power over my life than it already has, we decided to go ahead and the final plans will be put into place and the booking done this week. Before those pcr results are in.

It can only be one of two things........ the pcr will come back higher or lower..... ok, ok - or the same, three options. Option number one = lower, and then my heart will be extra light again; option number two = same as last time, which is also great! and the last would be a jump in which case another pcr test will be drawn in a month's time and then a months waiting will put us right at the time we will be heading back home or already here. See? Calculations all done and neatly sorted.... now just to get my heart to listen!

No, I am sure it will come back just fine again this time....I never realize how much hope and energy goes into this belief, until those results hit my brain. The relief is always almost surprising, tremendously wonderful and very welcome. And I am going to believe that it's going to be this way again - no reason to think otherwise.

On a more serious note....... leukemia claimed yet another wonderful person, Michelle, this past week. She was only 27 years old and made such a huge difference in so many lives.... if you know someone who is not on the marrow registry, talk to them, tell them how important it is and send them to Michelle's blog - one of us really can save someone's life. Here is another young person, who even though critically ill, put herself out there to help others to live - and she succeeded too! Michelle, the world is definitely poorer without you here with us. Go well.

Love, light and hope

Annie

more hope.....

Data showing the ability of omacetaxine to kill leukemic stem cells in mouse models with drug-resistant chronic myelogenous leukemia (CML) are the subject of an advance online publication in the journalLeukemia, ChemGenex Pharmaceuticals Limited (ASX:CXS and NASDAQ:CXSP) has announced. The findings of this study provide new insights into the problem of minimal residual disease and may open the door to the development of a curative treatment strategy for some patients with CML.

Here is the rest of the article..http://www.medicalnewstoday.com/articles/144013.php

Thanks to Hans for the reminder about this article.... it's this progress that keeps me sane, keeps my life on an even keel....  

And then I find one of my pictures that really do inspire me as well.  Look at the barren-ness of the landscape around this tree - and its holding on and growing too!  We have so much hope for the cml-ers of today.  Just wonderful.  

It's easy to get scared at times with CML, it's not something that is totally controllable for ever, it's not something that once under control will always stay that way.  CML can do whatever it wants and we will all just have to adjust to that.  Again.  This is why the tests are done so regularly - to keep an eye on it so that we can catch it if it decides to mutate or take a different course.

Yes it's scary and yes it's cancer and sometimes I need to remind myself that all three my kids are exposed to all sorts of things that could harm them every day - all the nuts on the road, falling aircraft, other diseases, biting dogs and things like the swine flu.  

Thats when I really do 'get a grip' and count my blessings that our lives are not totally run by CML and that we do have the space in our minds to worry about, and enjoy, the normal things of every day life.  This takes time to get to and the first year was really the worst for me as I got used to having to stand back and wait and then to try to learn to control my worries and fears.  And again - we have been so fortunate that Steven's cml has not been giving us too much of a rocky road.  I really wish it were like this for everyone...  (you too Kelly and husband.)

I just know there is going to be a cure for this disease - it may entail encouraging my child to take arsenic or something else I cannot spell, it will entail being totally thrilled with test results in the below zero range.  I hold in my mind the picture of the celebrations that will be held world wide when this happens.  I also hold in my mind the pictures of many people who did not get the chance to hang around till that time - and they hold a special place.  They are the people who tried different drugs, were in the drug trials, who helped the scientists and doctors try new things or note the drugs that did not work under certain circumstances.  They are the people who opened the road to the cure.  Makes me quite tearful to think of just how much we all owe them.

love and light

Annie

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