Thursday, November 27, 2008

Happy Thanksgiving

To everyone in my life - you are all special, beautiful and unique - like the ice crystals on this leaf.  Each of you is a part of my life and without you, my life would be emptier. Thank you!
love and light

Sunday, November 23, 2008

Freaky face...

Today I was playing around with the camera again and took this pic of a little critter my sis, Kate, gave me a long time ago.  I laughed.  I bet I look like this around test time!  

Saturday, November 08, 2008

Fire Trees!

Oh today was awesome......the sun was shining and it lit up the trees in an incredible way - fire trees!  So I took Number One Doglet and my camera and walked down the road to get some photos again.  I really feel myself coming alive when I see the world through the lens.  So many things some to mind - comparisons between real life and the life we are living in worry and tests and happiness and sadness.  When I put the pics on my computer and zoom in, its easy to see that life in itself is a miracle and that its all important to enjoy the minute - like the dew drops on a spiderweb, they will soon be gone.....
No matter what - the trees will glow like this for as long as the earth breathes....... here are a few and some more on this site:

And  I had both Steven and Lisa in the shop today, with Joleen very much in mind....

Ok - here are some photos of today
Love and light

Join the Marrow Registry for FREE in Nov.

November is National Marrow Awareness Month. Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

This is your chance to join for FREE. What are you waiting for?

Join online for free while funding remains.

It's easy to join:
1.  Confirm you meet basic donor guidelines.
2.  Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
3.  Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

NOTE: When filling out the application, it will ask you for a credit card number and it will still mention the $52 fee normally charged. Ignore the $52 fee and don't enter any credit card information. On the final page it will show a $52 fee and a $52 coupon making your total $0.


For more info on what joining is all about, 

Thursday, November 06, 2008

a bit more.......

I was just sitting here for a few minutes before going to end the day....and I realized that I am smiling again. It's like a reprieve from something truly horrible, this getting those results! Even if they are not perfect or with numbers or anything - at least they tell me that my son will be ok for a while longer at least. There is no way to fully describe this feeling, it's too deep, too meaningful.

The difference in me is difficult to grasp - even after just minutes of seeing the results. It's in the way the moisture that jumped to my eyes in relief, dried before they became tears, it's in finding that relaxed smile or realizing just how many muscles were clenched and tense in anticipation. It's in how I looked around the room wanting to reach for my camera again - first time in days and in the lovely feeling that I see me again - well apart from my mom in the morning mirror!

Whatever it is, I know how incredibly blessed I am in SO many ways.

love and light
Here are my three chickens and my eldest nephew, 4th chicken (in solid red), many many years ago.   Steven in rear right, Joleen front left and Lisa in blue. All so sweet and cute and happy and healthy! So incredibly blessed we are .......

"The Same" ?

Ok - here it is......
Bcr-abl is detectable, but housekeeping gene level suggests a partially compromised sample such that accurate quantitation is not possible. However, this sample appears to have comparable bcr-abl levels as this patient's sample from 7/17/08.

It's just as the lady on the phone said - "the same" and I am just going to go with that till the next pcr.

The whole day today was unsettled for me.  I knew that there was nothing dramatic in these results, but because I did not know the exact wording, my soul just would not settle down and accept.  I get so tired of feeling like this.  The withdrawn, detached, pre-occupied feeling even when there really are no flags to warn of change, is a lonely place.  I guess its a selfish place too, as I don't let others in when I am there, which is why its lonely there.  I don't want to hear the 'it's going to be ok', or the 'why are you worrying' or  the 'he's fine! Stop worrying!'. I know all these, but I want someone to bash the establishment with me - I want someone to be pissed off and frustrated right along with me - but at the same time, I know absolutely that its not necessary nor is it the wisest route to go.  My online friends have been awesome in giving me exactly the mix I needed and wanted and Frank has been Frank all along, which creates a tremendous grounding for me.

Anyway - right after Steven said that he would drop the 'non-results' off tonight, I felt the frillies leave.  Wonderful!   I know that I worry more than others do, and maybe more than what I should - but this is me and I can only be totally me.  I am much better in the in-between months and really did not even count the weeks till these results came in - it was a pleasant surprise last Friday when I realized that it had been 3 weeks already!  So, I am improving.  It's necessary.

So many things were screaming through my mind today and this evening - so much to write about, all those upside down, inside out feelings......but I cannot grab hold of them now long enough to describe them.  Lovely  :)

It's incredible to think that we are nearly at the end of another year.  They are just screaming by with no consideration for all the things I still want to do.  I see my kids getting older and older and a woman who looks a lot like my mom, seems to be appearing in the mirror in the mornings....  Soon we will be at the three year mark with leukemia in our family and I have to say that I am incredibly, incredibly grateful for the way it has progressed, or rather, NOT progressed.  There are way too many people having a really rough time with this disease......

Special thanks to Lea, Diane and Kay for the hand-holding and flittering you have done, once again, with me during these past few days.  Kay, your description of medical administrators was priceless!  Thanks everyone for the comments you post here, and HockeyChic - I wish I had your email address.  All of you help so much during my frilly times.  Many many thanks.

With a smile
love and light

Wednesday, November 05, 2008

Sort of waiting....

I am not sure if we have an answer or not..... 

On Tuesday morning I again called the Onc's office to see if they could pull his chart and get me the numbers..  After talking to yet another 3 ladies, I was once again told that they would call me back.  Again.  So I waited some more.  I know this is a small office that I was talking to, I also know they are busy - but geez!

And when they called, her answer to my question was: "it's the same as last time".
Me:  Ok - so what are the numbers? You know........ the 0.something-or-other numbers.....
Her: There are no numbers - the doctor just wrote that they are the same as last time.
Me: Well, (through very tightly clenched teeth) what does the report SAY?
and so she started reading and I am not sure that my words are correct, but it went something like this..... " the housekeeping gene shows signs of (I think she said) degeneration and therefore no reading could be taken - but it's assumed that it's the same as the last pcr test".

Is it the 1st of April??  I sat there for a few seconds, calculated the days till Steven's next appointment and the importance of getting any frillier - and let it go.  I thanked the lady on the phone and hung up.  It's quite amazing how sweet one can sound when talking through gritted teeth and hanging from the ceiling by one's fingernails, but it's not her fault - she had no idea even what she was reading.

Steven called soon after and said that his appointment was on this Thursday, I had thought it was next Thursday, so it does not make sense to worry about it any more.  This time.

So maybe, maybe tomorrow we will have some answers.  It sounds to me as if another pcr will be taken rather sooner than later and we will see what that one says.  Maybe.  But lets see.  And maybe next time I will not call for those results early.  Maybe.  

The funny thing about worry is that it really makes no difference to the outcome at all, but I have not yet found anyone that can honestly say they don't worry at all - not even a teeny tiny bit.  Lottie said that worry is like a rocking chair - you go backwards and forwards and backwards and forwards, but nowhere else.  This is so true.  

I really don't spend the time between pcr's worrying - its just the last day or three when the results are due.  That's when it hits and the nailbiting starts - the rest of the months pretty much are back to .......well life as it is.  And it's good.  It really, really is.  I know just how fortunate we are that Steven is doing so incredibly well...and I am tremendously grateful.

More tomorrow.
love and light and a hug to Kay

Saturday, November 01, 2008

Angry week

This week I am angry.  I am angry at what this disease in my son does to me.... It's not my illness, obviously, but it invades every part of my life.  I am angry at the feelings it brings to me, the "scareds" it delivers sometimes first thing in the morning before my eyes are even open. I can feel myself much more touchy, much more irritable and aggravated as the days get closer to being able to get Steven's PCR results.  I am angry that this disease can and does royally mess up full days at a time and yes, at times when I think of these words we now all live with - cancer and leukemia - at times it takes me to places I just don't want to be.

Recently, and very sadly, Cam passed away after two transplants to try to whip this disease. I also started reading a blog just last week of a lovely young lady, Erica - and now the news for her is not good at all either.  Others like Tyler and Dawn are also battling so freaking hard against it.  WHAT is going on??

I don't want to think of this disease in any other way than it being 'the good leukemia', or 'easy to control' or 'like diabetes' - but this wait for the quarterly results really blows all those easy thoughts to the wind and leaves me a much less nice person to deal with with many thoughts that I definitely don't want.

I wish that the doctors, nurses or the aids or receptionist or ANYone at the onc's office would realize just what waiting does to one, and in a show of utter kindness and understanding would call people with their results!  Or even just call to say that they are in and ............  Well, you get the idea.  Instead, I am left counting the days since the blood draw, biting my nails while I wonder whether three weeks is enough time to wait before calling the onc's office and being told that I will get a call back, and then more waiting.  I could not handle that on Friday, so I did not even call.  Steven's appointment is only in 2 weeks time and I know the results will be back way before then.  

Can I wait?  If I have to. But do I have to?  AAaaaarrrrrrrrrrgggggggghhhhhh.  At least it's weekend again and I cannot do anything about it till Monday anyway.

Another thing that gets to me is that in this time of worrying about those results, I tend to look for other blogs and stories about cml.  I keep hoping to find happy, successful stories.  I want to hear about others in either Steven's position or mine, that are having raving success with 400mg Gleevec and getting on with their lives.  But sadly, I keep coming up with more and more people struggling to live, having to change meds, dealing with difficult side effects and on and on.

Even the support boards seem to be filled with people moving from one medication to another because of  mutations or lack of response or something.  I don't have any reason to gripe at all - Steven is doing well and  joining in those discussions seems, well, silly in the face of the struggles of others.  So, again - I am left clawing in frilly-ness for happy stories to help me through these waiting days.

I know - I am fortunate.  Steven is looking great and so far Gleevec is doing it's thing........... and now I am off to bed to read till my mind shuts down for the day.

love and light