Thursday, December 16, 2010

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, 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

Tuesday, December 07, 2010

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