Tuesday, August 24, 2010

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

Monday, August 02, 2010

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

Sunday, August 01, 2010

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