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


Lea White said...

Wow! You described the loss of normality so perfectly. I'll never forget when I first emailed to let family and friends know that Bianca had leukemia I asked "please keep in touch with your news" (which unfortunately many never did, but my mum diligently and on a weekly basis did). I so badly wanted something that was normal in our lives.

Chuck said...

Oh how I remember trying to find "normal again after I was diagnosed. I was diagnosed on November 1st 2005 and when Christmas came around that year it was odd. I have always liked Christmas more so for the giving then the receiving. That year it was just reversed. It wasn't planned but it was obvious what happened. Since then Christmas is much more normal which makes me happy. Not having to think about CML around the holidays is a gift in it's self so enjoy the time. We are planning on putting up our tree this weekend and I will enjoy the decorating a little more after reading your last post.
Have a great holiday!!!