Saturday, August 22, 2009
My daughter is expecting another child later this year and to help keep track of the days, I have put a widget on the right side of this blog that will count down the days till his arrival. Yup, it's a boy this time..... poor thing in a house full of girls! And Lisa and Brian have decided to name him Steven William.... Awesome, hey?
Anyway - that's the news for tonight.
love and light
The results are 0.22% on the International Scale. This is slightly higher than the last pcr, but lower than this time last year - so all is good :) Steven's doctor recommended no change at all so now its time to kick back, relax and just enjoy life with this worry, once again, gone for now.
It felt like an extraordinarily long wait this time and the time is almost here again to order that kit from OHSU again. Sometimes I just get so tired of it - and then the moment passes and I realize just how incredibly lucky, fortunate, blessed I am.
Steven is looking good, sounding good, and is going to gym on a regular basis too. His life is everything it could have been without cml. I know that on many levels he has grown beyond what he would have if he did not have leukemia and for this I am grateful, even though obviously I wish he did not have it. Our lives are all so good despite, and perhaps because of, cml as part of it.
So now I can get ready for our trip next month with a lighter heart. I realize how much depends on those results every few months. It's not like we put our life on hold, but the "what if" factor is definitely more often visited when it' waiting time.
Thanks to everyone who waits with me, I know I am not alone in wanting those results and it really does count a lot to know that you are right here with me.
Love and light
Wednesday, August 19, 2009
Friday, August 14, 2009
I am so sad today - Nick passed away yesterday. His mom, Diane, writes a beautiful but heart rending blog that so many times has made me laugh and cry at the same time. Today it was just tears as I read her words from late last night. Nick is finally free. But his death has obviously left a devastating path...
I cannot begin to even imagine the pain they are all going through and will be going through for a very long time. Just thinking about thinking about that makes me want to bawl all over again.
Diane, I am so incredibly sorry that you no longer have Nick where you can reach out and hold him, talk to him and see his smile and hear his voice. I am so sorry that you have this horrendous pain to deal with. I am so sorry that there is not a single thing anyone can do or say that will help make your pain go away or become less. There is no other mom that is going through exactly what you are going through right now and that must be an awfully lonely place in so many ways. There are so many of us who have been touched by your words and your battle and of course, Nick, that are holding you and your shattered heart in our hearts.
My deepest sympathies go to you and your family and to Kate.
So many things go through my mind when I hear sad news like today. Although Nick was leukemia free when he died, it is still because of the disease that he died..... and that makes me angry, sad and very very scared. I do know that each and every one of us is going to die and I know that it can happen for many different reasons and at any age, but - well, I don't like the fact that my eldest child has an elevated chance of it happening sooner because of this disease. This is also not quite accurate anymore what with Gleevec and the other meds and advances in treating cml....... but that does not really help much on days like this.
There is a program on tv now with Niel Diamond and all his lovely old songs and it takes me back, waaaaay back, to days where everything was so simple, nothing could hurt us, we were invincible and well stuff like cancer just did not feature in our lives. Oh how I miss those days on a day like today.
And earlier on this morning I went to see my doc (something really minor) and as I walked up to the building doors, I realized that I was only one arms length away from Steven's doctor - and his results!! My heart actually skipped a beat. Oh boy, you should have heard the high speed conversations - both sides - that went on in my head in a matter of seconds! But, I walked past with only one small stumble... and a whole lot more temptation than I had been handed in many years. When I came out again I knew that I had better be distracted or the temptation might just get too much, so I called my sister - thanks Katie! And again I walked past that door less than 6 feet away.
I have to leave this to Steven. I have to. I do have permission to get his results, but that would be undermining him, especially if I had got those results without asking him specifically. And tomorrow he will be working with us again all day long..
I am SO incredibly fortunate. Tears running down my face again for Nick and his family and I am worried about being able to control myself while I have my son all day long!? It's difficult to try to understand why I am so broken up about someone I never met, but its real, its scary and I feel so much for his mom without even coming close to understanding her pain.
I think today's world has very little to do with understanding much of anything.... I think it's more and more about just living with every fiber that one has for as long as we can and then to just believe that there is something more afterwards.... Trying to understand seems to bring about more questions, more sadness and more unknowns and definitely does nothing for peace of mind at all.
Nick, may you dance in the freedom from pain and hospital rooms, may you see everything you still want to see and may you know how much you were and are loved by so many..... You are definitely missed, even by someone who never knew you.
A special dose of love and light to Nick's family and friends - and especially Diane.
Saturday, August 08, 2009
I did it............ success! Not a word, not a hint.......... It was lovely having Steven with us all day, but boy it was long sometimes with those conversations in my head and the subtle taste of blood in my mouth as I literally bit my tongue later this afternoon.... but it feels so good to have succeeded...
love and light
Friday, August 07, 2009
No PCR results yet......
This time around I am leaving it up to Steven to call. Up to now I have always jumped in there first, taking that away from him, keen to get those results as soon as possible. This time I have decided to leave it in his hands. Totally. Aaaaarrrrggghhhh. His doctor's appointment is mid August - I dont even know the exact date! I will not ask him to call, will not remind him to call, will not even HINT that he should/could do either..
The conversations in my head get very interesting at times..... time and time again a little voice almost convinces me that its ok to let slip in some 'innocent' way, to remind him to call, I have had very 'casual' conversations in my head with Laura, trying to find out if he will call or just wait till his appointment...... and so far, I have not yet given in. One side of me would do anything to get those results and the other side will do anything plus more to be able to leave it up to him.
He is working with us again tomorrow and its going to be a long day with much tongue and cheek biting to stop that question....but I am determined! Wish me luck!
Drop in on Nick and send him some good healing vibes and a note as well - he is fighting hard against many things right now and can do with all the well wishes possible - all of them can.
Have a great weekend
love and light