Thoughts and thanks....

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

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

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

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

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

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

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

love and light
Annie

Christmas and things......

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and light

Annie

The beautiful dance...

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

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

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

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

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

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

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

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

Today was another really great day.

love and light
Annie

27 years......

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

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

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

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

Happy birthday, Steven, I love you.

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

Totally amazing!


Homemade Spacecraft from Luke Geissbuhler on Vimeo.

The National CML Society

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My best to EACH and EVERY one of you!

Here for a Purpose!
Greg Stephens

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

a thought....

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

 

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

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

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

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

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

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

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

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

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

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

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

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

Long overdue PCR update

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

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

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

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

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

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

Love and light
Annie

Something wonderful.....

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

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

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

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

Here is some of what they stand for:  

The Passion

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

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

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

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

Love and light

Annie

Needed - a big strong tree!

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

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

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

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

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

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

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

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

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

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

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

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

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

A Donor's Story

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

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

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

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

       

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

      

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

  

                                                     This Is My Story

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

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

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

  

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

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

                                                   Please register to donate.  

                                                        Register Here

Un-setting my heart.....

During the last week that we were in Costa Rica, Laura emailed me Steven's latest PCR results.... what a darling that young lady is! Obviously my first reaction was absolute joy, and this lasted a good many hours.  But in the quiet of that night and the next few days I realized that I had been moving away from cml, moving away from reading the support groups and getting almost reticent in keeping up with it all, and this was for a good while before we left on our vacation (which was really great!)

Its so easy to move away from it all when Steven is doing so incredibly well.  Its easy to become complacent and let life go by and some would say that that is not a good thing.... but it really worked for me!  I love having the extra space in my mind and heart, I love feeling creative and not thinking about cml for days on end, I love the feeling of freedom.

And then there comes the 'guilt' again, the guilt for not being involved, for not participating, for taking that step backwards.  This lasted until a really amazing lady put me straight in a beautiful and lovely way - that is a letter I will treasure forever :)  Thanks!

It's ok to fill your life with other things, its ok to take that step back and its even necessary and healthy to be slightly, and more, removed from something like a cancer diagnosis, treatment and all, at times.  It's allowed me to be whole again - and yes, I know it's not me with cancer, but it really has affected us all deeply.  Stepping back for  awhile has allowed me to grow again, get stronger, to just be, to kick back and really enjoy the other things going on around me.

I am not suggesting that anyone remove themselves from their situation - just that for me, it was wonderful to take a break from it all, to let things float when all is going well, to put cml on the back burner for a while.

Yesterday I read something that really resonated with me and really does describe what has happened to me since Steven's cml diagnosis.  It was said in relation to a guy having cancer and how he is dealing with it...... here it is:

"It's not a weight on my shoulders anymore, but like an engine on my back."

These words have been winging their way through my mind all day long, bringing a smile to my face.  I realize that since that first horrible, awful, terrible, frightening day, not only have I been terrified, but I have had this engine on my back pushing me past limits I had before.  Limits of learning, limits of friendships, to understanding and limits of accepting things....  What an engine that has been!  That engine has brought me peace and friends that I never imagined, it's brought happiness, depth and love beyond what I could have dreamed.

And another set of words sent to me also resonated deeply:

Un-setting your heart means letting go of your picture of how you want it all to be. It means letting go of trying to control things over which you have no control. One of the prime causes of our suffering is our wanting things to be different than they are. Yes, we all want a peaceful world instead of a world filled with weapons of mass destruction.

Yes, we all want health instead of illness. Yes, we all want healthy, happy children instead of children who break our hearts. But sometimes life doesn't hand us what we want. And when we un-set our hearts from our needing it all to be a certain way, we can breathe a sigh of relief and open the door to a more powerful way of living.

And so I think this is what has happened now ..... my heart got un-set.  And now I can embrace the cml back again into my life with no frilly edges, deeper understanding and yes, a more powerful way of living.  I know that this can, and probably will all change if anything changes with Steven, but hey, for now I am really enjoying it.

And............. we found ourselves another little girl.  Maddie cannot ever replace Sophie, who left a huge hole in our hearts and life, but she definitely makes it much easier and she and Allie are like little whirlwinds of fur playing much of the day.  She is like a little "Mini-me" to Allie, a cuddle pup and she listens sooo well to my ramblings late at night :)

Love and light

Annie

Pura Vida :)

Of all the things we are seeing in Costa Rica, the very very best were a few little numbers in a message Laura sent me this evening........ yes!  Steven's PCR results!  0.015% !!!  Thats even lower than last time and I had already made sure that I was prepared to hear that the results this time were going to be higher.  But lower?!?!?  Whooo hooo!

I would pass up everything, even this little green froglet that jumped off my hand straight onto my mouth, a kiss? - just to see results like this - but I get both!  How awesome is that!

Steven and Laura - I am so proud of you two, so proud of how you take this disease seriously, but dont let it take control over your life.  And I am so happy about these results - a huge thank you for emailing them to me!

Also - congratulations on your first wedding anniversary, Steven and Laura - wow- time really does fly!                                                       

Here in Costa Rica they have a saying "Pura Vida", pronounced "puhrah veedah" - it means 'everything is good, very good....  I will smile wider now every time someone says that - and they do so often - its used as a greeting and the answer to a greeting.....

Pura Vida........ yesssssssssssss!

love and light

Annie

Online interview about this blog...

Recently I was asked by Wegohealth.com to do an online interview...... here it is.

Be sure to look around on their site - there are a bunch or really interesting articles and help.

Here is a bit more information and some links to look at too.  Please see if you can be a part of this group - its always a wonderful thing when people can help others through whatever it is in their lives.  This is not only regarding CML, but covers many other health issues.

Once we are back home again I will be more involved with them too, right now I have just run sheer out of time!

Till later.....

love and light - and laughter!  Thanks Esther :)

Annie

Upcoming CML Insight Groups:

In our ongoing mission to empower Health Activists to help others, WEGO Health is hosting online focus groups on Tuesday, May 25^th for people who are active contributors to the CML community online.  We’re looking to learn more about the CML community, what folks are talking about, and what kinds of tools and resources might be helpful.  These groups are being held on behalf of one of WEGO Health’s sponsors.

All participants will receive a $25 Amazon.com gift certificate, and WEGO Health will make a matching donation on their behalf to the National CML Society.

The sessions last one hour and are held remotely—participants can join from anywhere in the country, you just need to be online & on the phone at the same time.  Groups will be held at Noon, 4PM, 6PM and 9PM Eastern Time.

If you’re interested in participating on May 25^th, the link below will take you to a short survey to see if the group might be appropriate for you:

CML Insight Survey (hyperlink goes to: http://www.surveymonkey.com/s/V58GZDK)

http://twitter.com/wegohealth

http://facebook.com/wegohealth

www.wegohealth.com

empowering Health Activists to help others

Spotlight on: Annie, author of the blog Living with CML

Active in the CML Community since: My son Steven was diagnosed March 2006.

Occupation: I fix, build, repair, re-program, de-virus, and upgrade computers

What do you do when you’re not raising awareness about CML: Photography, travel as much as possible, catch up with family and friends

What prompted you to start blogging after you learned of Steven’s diagnosis in 2006?

Writing has always been an outlet for me. Most times when you go through something this huge in your life, others cannot possibly “get it” without having gone through the exact same thing. So no matter how my family and friends wanted to help, they couldn't. Writing it down became a way to sort through and get rid of some of my frustrations and feelings of horror.

It was a very emotional and scary time and to tell the details over and over again as family or friends asked, took a lot out of me. Blogging was a way that I could tell it once and everyone who wanted to know could get the information. It also made it easy for those who did not know how or what to ask to keep up to date and deal with it in small chunks at a time.

You recently printed out a few copies of your blog and reread it from the beginning—did anything surprise you?

Oh yes! It really surprised me just how much I’ve written, what I put in and some of the things I left out. It also made me smile at how I would interpret a photograph according to what was happening with Steven or the thoughts and feelings in my life at that stage. I was in such a fog in the early days; I am really glad that I wrote it down or much of it would be forgotten by now.

It surprised me that in some ways it feels like just yesterday that we lived all that, and that the emotions still lie really close to the surface when re-reading the blog. At the same time it feels like a lifetime ago. I can now see that it’s not only a diary of Steven's CML progress, but of my growth, acceptance and how I have learned to live, give and care about so much more than I did before.

It surprised me just how much my focus has been able to shift from CML being all encompassing, to enjoying life so much more, with CML just an important part of it. If someone had told me back then that this would happen, I am sure I would not have believed it. It is also very interesting to realize just how much fuller my life is with everything and everyone that CML has brought our way. Our lives have really been enriched and strengthened over the past four years, and holding the blog in my hand in paper form really drove that home for me.

How has your blog changed since you started it?

The blog started as a horror story for me. Now, after seeing it in print and reading it again from the start, I see it as quite an amazing love and life story. It’s a story of the deep love and admiration I have for Steven and his wife, Laura; of the love and patience of my daughters, Lisa and Joleen, and my husband, Frank, while they waited till my focus could properly include them again - it took a while. The love and care shown to me from people all over the world while they were and are in their own world of pain has been absolutely incredible. But it’s not a story that is by any means over – every day contact with incredible people from many different parts of the world keep adding to this huge circle of support that is always available. This story is not only being built in the sad and bad times, but most definitely in the celebration of good times too, despite cancer in our lives. Perhaps because of it. The early words and memories of the blog are soaked with fear and loneliness. It’s so very different now, so much lighter, so much gentler.

Do you find there are particular challenges blogging as more of a “caregiver” than a patient?

Oh yes. For starters, sometimes it feels like I am whining about something that is not even mine. Someone said to me about a year after Steven’s diagnosis: "He is doing fine so have no reason to worry, and this disease is his, not yours – let it go!"

This is true, but as a parent of a child with cancer, life is just not that simple any more – we cannot just close that door to worry, it has to work itself closed over a period of time. I am also not really Steven's caregiver – that is primarily Laura's role and she is totally amazing. She keeps a close eye on him every day and deals first hand with the side effects, frustrations and worries that go along with this all - I would love to tap into her mind and really understand her role.

I am always aware that I have no idea what or how Steven (or anyone else with CML) is coping with it, but I can write about my feelings and struggles in learning to deal with the fear and changes that a cancer diagnosis in my child brings. In a situation that is really good right now with Steven holding on to lovely low test scores, it is a wonderful, and almost free, place to be able to write from.

What do you wish someone had told you when you first learned that Steven had CML?

That they had made a mistake and that he just had flu…

I am not sure that anything anyone could have told me would have sunk in or made a difference when we first learned that Steven has leukemia. Getting Steven to see Dr. Druker about five months after his diagnosis was the very best thing we could have done. Dr. Druker instilled such peace, hope and normalcy in us all. After that meeting, I listened to my son sing as we drove from Portland to the coast. That’s not an ordinary occurrence and it was truly a beautiful noise! That was a turning point in all our lives. A good one. I wish a “Dr. Druker visit” on everyone with CML.

What’s the most common question people ask you about CML?

People don’t really ask anything particular – they read the marrow donor plea on the shop wall, and sometimes ask if that’s our son. It does not seem to be widely known that there are a quite a few different types of leukemia and they are often surprised that CML can be treated “as easily” with a Gleevec pill a day.

Normally, after they read or hear about Steven’s diagnosis, eyes go soggy, heads tilt and I can almost see them scrabbling for words. I quickly reassure them that he is doing great, that he will be ok, that he is going right on with life and I tell them how important becoming a bone marrow and blood donor is.

Most times, talking about Steven’s diagnosis opens the door to them telling me about their own cancer experience and so often their words tumble out in a manner that shows that even years later, they needed to share their story again. It’s fascinating and wonderful and has taught me that almost everyone has a story of some kind that needs and deserves listening to.

Is there an area of CML research that has you most excited right now?

Yes, there are a few very interesting trials going on that I have so much hope for. The people who are in these trials are the forerunners to a cure for Steven and the many other CML-ers out there. They have my utmost admiration and the deepest possible thanks – each one of them. Every step forward towards the possible cure of CML is reason for excitement and hope and it’s absolutely wonderful to see just how much research is being done in this field.

What has helped you the most during the past four years?

The most helpful thing has definitely been the fact that Steven is so open with me about everything regarding his CML. I cannot imagine not knowing a test result, or when his blood tests are done. I know that either he or Laura will come to me with any worries or questions they have, and this really does free me up to get on with my life without creating those dreaded ‘what if’s’. It allows me to look at Steven with fewer ‘mama-scans’ and see CML as only the very small part of him that it is now. In the first couple of years, I have to admit to thinking first of CML and then of the person whenever Steven came through the door. Now when he works with us on Saturdays, the whole day will go by without any worry-thought being tied to him – just wonderful. I could not have reached this space in my life, or been able to put CML aside to this extent, if he and Laura had not been willing to share it all. I know my relationship with Steven would not be as close as it is now if things had been any different.

The online support groups were absolutely critical to helping me become more even keeled and especially to learn everything I needed to about CML. They were particularly important in the first two years. They really were my 24/7 help line that kept me going then. They’re still a constant source of information that comes directly from personal experience and an incredible amount of knowledge from all over the world. The ability to post a question there and get a response from someone who is going through the same issue is priceless.

The people that I met through there and through my blog are all a huge part of who I am today and because I am ok, I firmly believe that Steven is able to move on in a more whole way too. All these people, and so many more, will always be a part of our lives.

What’s the best feedback you’ve received since you started Living With CML?

It’s all been the best – from the moms reading what I write and finding help in the words, their stories of hope, heartache and help; the people who write just to make contact even for a little while; others that I have met on our travels around the USA – all the best.

The firm friends that have been made through CML and the continuing contact through the ‘frilly times’ into the more gentle and kind days—it’s a really great experience to follow someone through transplant and into the years beyond and to share the good days with them after so many really rough days.

Hearing that someone has seen just how important it is to let their mom know how they are doing and feeling, and that this helps their mom too, is such a bonus. To hear that a relationship between people has been improved or repaired because someone read how it helps me to know all the details, is phenomenal. It’s life changing.

So many people have shown us so much caring and each one is as special and important as the next. It’s an incredible feeling to know that just writing about my emotions actually helps others.

I feel deeply honored that I have been able to help in this way.