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!


hockeychic said...

Sorry that has been such a rough spot lately. A lovely gentleman from work is now on his last days due to that monster cancer and I find myself just praying that it goes quickly as he is in so much pain. It just seems so unfair, he retired to Florida just a year ago and didn't really get to enjoy it. I guess for all the dark spots (and there are plenty) we just have to find our way back to the light. The video is great and a wonderful point of light. I like the strong umbrella tree and would love to sit under it with you!

Chuckles said...

Wow, the first thought that came to my mind was, if Steven's doctor can't read the results from OHSU easily then I think a new doctor might be in order. Isn't that his job to read lab reports and tell the patient what or if there are any changes. I have read many blogs about CML patients and have heard stories about doctors that feel threatened when patients question what they want done. I personally feel it is the patients responsibility to get the best treatment that they can find. If that means sending bloodwork to a world known lab then that is what needs to be done. If Stevens doctor doesn't like that or feels undermined then just maybe a new doctor should be found. However I do know how challenging this can be.

I am extremely luck that my local oncologist is the one that made the arrangements for me to see the specialist I have now. In fact he made the call when my wife and I where in the room just after I asked him if he was the best doctor to be seeing me. He thought for a moment and then said "no" but I do know someone who is, and then he made the call.

I also know it is difficult it is to switch doctors that you might feel comfortable with. A year or so ago my family doctor went to work for our hospital and I had to shop around for a new doctor. The one I have know is good but just not the same as my previous one.

I do like Steven's thinking that he will see how the next appointment goes as everyone has a bad day and maybe his doctor was just having a bad day.

I am sure Steven's test will come back fine and you will be back sitting on top the tree instead of under the umbrella.