Sunday, August 31, 2008

Listen to Dr Druker!

This is a fantastic way of not only describing cancer but of the total determination of this man to really make a difference.  Just look at his face as he speaks..........

Thanks Dr Druker!  I cannot count the number of times I have sent that man a silent 'thank you!' 

He is one awesome man

love and light

Friday, August 29, 2008

I have been thinking............

One of the advantages of traveling like we do is that there are plenty of loooong driving days where my mind just sets free on its own journey while my eye and the camera take in the passing scenery.  One of the topics most on my mind lately is the one of "rest in peace" when a person dies.  Well, I sincerely hope I don't offend anyone with these thoughts.  

In almost every culture or religious belief that I know of, one of the main themes is an Afterlife.  I have seen people put letters in the coffin with a person they love, we talk to them still after they have left this dimension - heck, we even yell at them!   We believe they can hear us and sometimes they even come to us in dreams.... Older cultures made sure that their dead were buried with company, servants, tools and food to  make sure they have a head start on the other side....   

Ok - so presuming that the majority of us believe that there is an afterlife, why, in Heavens name (excuse me!) do we want the person to Rest In Peace??  This conjours up the mental picture of a person lying in a coffin with their arms crossed just resting and not having a whole lot of life or fun at all.  Horrible in more ways than 100.  This is in no way what I want for those who meant so much to me while they were still living here...... I want them to be skipping between the planets, having a gazillion "Aha!" moments, grinning at the mischief they got up to here and laughing at just how serious we all still are back here on this ball of rock!  I want them to be playing their favorite sports, laughing with friends who got there first and generally having............yes.............."an Afterlife"!

I want them to be able to be all they want to be, in healthy bodies, with love and laughter and sunshine and beauty and happiness!  Not "Resting In Peace" at all!   Most cultures paint the mental image of this absolutely amazing place 'on the other side', where the colors are brighter, the flowers more beautiful, the fields and valleys amazing and the light just brilliant..... I don't want to rest in peace in a place like this!  I want the afterlife to be a place where the answers are known, or at least to know that the answers were not really important at all and maybe even the question had little value in the big picture.  I want the afterlife to be a place where there is no loneliness or sadness or somberness or pain. I want the afterlife to be a wonder-filled place.   I want to be able to go for long hikes, smell the air, fly with the birds and run with the wind - I want to LIVE!  

So from now on, I am not going to say RIP or 'Rest In Peace' or any such thing when someone leaves us early......... my hopes, dreams and sincere wishes will be. L.I.L.  This stands for Live in Love... Live in Laughter...  Live in Light....  Live in Life!

So, Adrian, Penny, Greg's mom - Carolyn and all others that have gone on ahead of us - I wish you anything but RIP - I wish you................... L.I.L!

love and light

Thursday, August 21, 2008

A very sad day...RIP Adrian

Adrian was one heck of a guy....... a young man who could have been angry and bitter and done nothing - and he had a right to do that.  But no, he took life by the horns and really, really made a difference.  His fight was a success.  We all have to die someday, but we don't all choose to live in the manner that Adrian did, even if we have years and years left!  

He was ticked at the successes of this disease and the lack of knowledge about marrow donation and wanted to make a difference.  And he definitely succeeded!  That's not losing the battle at all - that's winning, and winning with love.

Adrian is hero.  He did not ask to be in the position he was in and I am absolutely sure that he had no idea just a few years ago that he would make such an impact on so many people worldwide.   When he was handed this situation - he dealt with it an a way that makes him a true hero - he gave and gave and gave again, no doubt saving many lives that would not have been if he had not been as determined as he was to change something really important. 

So, along with being a son, brother, grandson, friend and more, he was also a hero and a lifesaver.  His actions might well be the catalyst that saves my son or someone else I know and love......... how awesome is that?

I will miss his blogs, his attitude and his ability to motivate people he would never even meet.  Although the world is a richer place because of Adrian, it's definitely emptier now too.  Adrian will be a part of my life, a part of who I am, always.

Kay, words of comfort fail me - I don't believe there are any that would work.  I have tried not to imagine your pain - it's a futile exercise though and  just the thought brings the tears and wobbles.  I hope that I never understand what you are going through and I deeply wish there was a way to make it easier for you all.  My heart is broken for you and Keith and Carrie, and all your family.

It was because of Adrian that we started the combination blood and marrow donor drive in our little home town of Soddy Daisy, Tennessee.  This will be held as part of "Adrian's Army", in memory of Adrian and in honor of Steven.  

The wonderful part of having a combination donor drive is that the "blood people" will cover the cost of all marrow donors that sign up during the drive!  This is awesome as the cost is normally $52 per person to get 'typed' and added to the Marrow Registry.....  So - if any of you are close by on the 25th October 2008, please come and be part of the amazing legacy that Adrian has started.

My heart is heavy with Adrian's passing - I will never forget him or what he has done for me.

Love and light
A double dose to all that love him

Tuesday, August 19, 2008

Hello's and goodbyes...

Wow - what a wonderful 10 days this has been!  My daughter and her husband came to visit us and arrived right on my mom's 80th birthday.  We had organized a surprise party and it all came together so incredibly well.  It was a really wonderful evening with all my children in one place, all my family together - kids, mom, nephews, nieces and grandchildren too!

The days screamed by in typical fashion with the shop being very, very busy too.  And today it was time for more goodbyes......... Joleen and Billy left at midday and yes, I bawled!  Sorry Joleen! :) That left me a tad wobbly for a few hours but then I had to pull myself together and start some serious packing.   We are leaving tomorrow morning for about a month on the road! 

We travel the best with no definate plans so tomorrow we will pull out of here around 7am and only then pull out a map and see which road will take us back up to Canada, the Icefield Parkway and perhaps even up to Alaska again. We never really know where we are going which makes for some lovely surprises and, of course, many many photos.

So Steven and Laura came around to get all the goodies out of the fridge -  everything that would not keep, some chocolates and jerky too  :) And then that goodbye.  And the last goodbye today, after both my sisters and my mom too, was Lisa-lu who was already in bed at 9.30pm!  

What happened?  The kids always fought so hard to stay up late at night and us parents needed early nights, now if I call the kids after 9.30pm - they are asleep!  It makes me laugh.  And here I sit up till midnight many, many nights.

Steven looks good, tired but good.  He has his new schedule for cbc's and pcr's sent to him and I am absolutely determined not to worry at all while on the road. 

I am SUCH a fortunate mama.......... three amazing, wonderful, lovely and caring children all with equally wonderful partners and all so happy!  I really am very blessed and so thankful.

Here is a photo of us all together........ I am really so proud of them all.  Thats my mom on the left - what an amazing lady that is!  Love you all.. Lotsa :)
Love and light

Wednesday, August 13, 2008

The results are in.......

This time there are two different sets - one is the 'old scale' and then we have the new "International Scale". Of course my eyes caught the new IS (International Scale) numbers first, which are higher (but not worse) than the readings of the OS (old scale). I will put in a better description of the changes below

And again, he has bounced a bit... last test was 0.04% - this time it's 0.079%. 0.14 on the NIS last time and up to 0.33 this time. Big sigh. The trend I see is that its going around and around in circles...... This seriously makes me think about his diagnosis - and yes, I know that I am probably following the wrong road....... but his first pcr test done was 0.13646 at Vanderbilt and his next was even lower than what it is today - 0.0286%. So in the big picture there is NO change at all!

I know it's not bad. I know it's nothing to run in circles and pull my hair out about or lay with eyes like saucers in the middle of the night. I know we need to watch for a trend. I know. But........ it still makes me wonder, still makes me look at the results and see that his results have hovered all around the same area for over two years now. It just makes me wonder - for now, thats all.

Of course this opens doors in my mind and I wonder how to get a second, third or fourth opinion on this without being rediculous. I know that some people will have a postive pcr reading even if they don't have cml. Could it be that ..........aaaaaaarrrrrrrghhhhhh! There is no way to find out without stopping the meds and risking SO much. So I will just have to stop going down that road. Seriously, it does make me wonder though..

Here is the better explanation of the new vs the old way of reporting PCR results - this comes directly from the paper sent out with the result from OHSU:

Effective February 2008, BCR-ABL quantitative RQ-PCR values will be reported as both:
a) a raw transcript ratio (BCR-ABL to control gene); and also
b) in units of the 'international scale' of standardized measurement that has been recommended by an international consensus of CML experts.

The international scale (IS) defines a BCR-ABL level of 0.1% as being equivalent to a 3.0 log-reduction from a standardized median pre-treatment baseline value (that is, by definition, equal to 100%). This 0.1% international scale level is, by definition, a 'major molecular response" (MMR) as established by the IRIS study (International Randomized Study of Interferon and STI571).
In IRIS, 100% of the CML patients achieving an MMR within 18 months of starting imatinib therapy were free from progression to accelerated phase or blast crisis at 60 months of therapy.

Special thoughts to Kay and Adrian and family
Love and light

Thursday, August 07, 2008

Still waiting..........

So today rolled in and rolled out with no results at all.  Steven went to the doctor, but apparently the PCR test results have not reached the oncologists office, even after it being a week since OHSU sent them out.  This is very, very tiring.  It wears one down and it takes a tremendous amount of energy to keep pushing out all the thoughts that naturally crowd in this close to getting the results.

I wonder if the doctors office even has an inkling of the stress and tensions caused by the waiting time?  No matter how I want to believe that I am doing wonderfully - I can feel it in my hair roots that I am 'frilly' around this time.  There is no doubt that I am doing better at waiting, and have been very fortunate to stay very busy with many  different things this time, but it seems inordinately long to have to wait for a test result!  Steven's blood was drawn for the PCR on the 15th of July and overnighted to Oregon.  This is a looooooong time to wait! And then to wait some more.

Ah well, what is - is.  I took this picture of doglet Allie keenly watching a Luna moth (ever so kindly found for me by Kevin, the Lawn Boy - Thanks Kev!), this evening and wondered at were I had seen such concentration on a face before..............mine!  In the mirror in the worst days of waiting.  That determination not to take ones eyes off cml for even a second in case it flies out of control.  Thank goodness it's not like that anymore.
May it stay that way.  Please.

So maybe tomorrow we will know those long awaited test results.  OHSU is going to fax them to the oncologists office and hopefully they will call Steven with the results before the weekend.

Love and light

Tuesday, August 05, 2008

Reaching for the moon.............

...............  now to find the falling star to lay the wish upon.

Busy days

Well, I had the distinct privilege of having this blog locked! They said that because I had "been identified as a spam blog" that I had to request a review and after two days I would be unblocked.

So I requested it and was duly unblocked. It's totally amazing how many words I had in my head when I could not post, how much I had to say but as soon as I saw that I was free to post on there again - woooosh - gone are all the words!

This is a very busy month. My youngest daughter and her husband arrive for a 10 day visit on Saturday, my mom turns 80 this coming weekend, and a tremendously agile and spritely 80 she is too! and then we leave for Canada to see if we can cath those northern lights (aurora boreallis) in the last week of August sometime - as soon as we can get packed up after Joleen leaves.

And Steven has a doctors appointment on Thursday this week when he will be given his PCR results. I have resisted calling and asking for them and will not be going to the appointment with him either. And amazingly, I am ok with both. I just hope that the results are back already or that hissy fit that is now dormant will grow and feed on me again. So, I am going to keep being cool and calm and otherwise occupied until the second he walks out of the doctors office with the results.

I am getting much better at dealing with this waiting time and my sincere prayer every PCR time is that I keep having reason to be cool and calm about it all.

We are organizing a marrow and blood donor drive here that will be held on October
25th, about a month after we get back from Canada. This is part of Adrian's Army - you have read his blog, right? ( If not - go there and leave a message, send a prayer and a happy thought.

Adrian is the reason I have shifted my rear end out of neutral and am doing this donor drive. He has achieved incredible things with awareness about the donor drive, in the Uk, and just from reading the comments on his blog, I can already see that he has and will be adding substantially to the donor registry.

Now - this is how it works........... a donor over there in the UK could save the life of someone over here. If Steven ever needed to go to transplant, he could find a match because of the effort Adrian has gone to literally in his dying days. This gift is incredible and can only be repaid in one way - help add to that Marrow Registry too! It's all about balance........

I have the need and responsibility to Pay Forward, make a difference. If you can, tell someone that its not a terrible, horrible, awful process to donate - join the registry, or even organise a donor drive in your community.

Normally it costs $52 to join the Marrow Registry, but I found out that if we put together a combination blood and marrow donor drive, that the fee is waived for those that register. I simply could not pass up this opportunity to try to make this happen. There will be educational articles in the newspapers, and hopefully the tv and radio stations will play along in getting as many people to come along and also be a part of Adrian's Army.

I never would have dreamed that one of my children could possibly need this procedure one day. And I remember well that day when we sat at Vanderbilt under the sign that read "Bone Marrow Transplant Section". My blood still curdles at remembering those thoughts and fears. None of us match Steven and so in a way it is a selfish act to do this drive, but at the same time, how wonderful would it be if by doing this, someone's life is saved?

I know that cancer in one person affects a whole community, literally, and by having a drive like this I believe the community can take a serious stand against cancer too. I think its phenomenal that by the simple act of registering here, one could save someone in another country or right next door. I wish I could do this for Adrian.

Ok - thats my burbling for the day.

Love and light (special dose for Adrian, Kay, Carrie and Keith)