Wednesday, June 27, 2007

Calmer waters.

Yes, I was worried, angry, scared and all that - but not for too long and only when I ignored the stuff that I actually knew and that which made logic sense and before we heard back from Dr Druker and before I read all the wonderful responses to my slight panic attack and before I was able to sleep on it and....... its quite amazing what a pressure release it is to let loose a few tears when they arrive. Not too many this time, but it really is like washing some of the scared away.

I typed my questions and 'scareds' on the Asia board and a more 'together' email to Dr Druker for his opinion. I was very happy when Steven's local oncologist, Dr J, asked me to get Dr Druker's opinion too. Anyway, Dr Druker worked his magic and answered that same night saying that the jump upwards was not that much at all and that Steven should have another PCR in 6 weeks after this one, which takes us to mid July and then he will give an opinion on where to go from there.

If the PCR then is higher still, then we will probably have mutation testing done, but nothing is urgent right now. So we will have those PCR results by the end of July. In the meantime Steven will go on with the 400mg Gleevec and will get another cbc done next week.

I had kinda, sorta put cml on the back burner, hoping that if I just believed that all would go smoothly, that it would. I kept up with reading the support boards but did not respond or post much at all. So when this rise in the pcr's came back and I posted on the Asia board, I was very touched by all the responses - private and on the board.. Its an incredible feeling to know that so many people really care and are out there ready to hold a wobbly hand. Totally priceless.

So now we will go on again as normal, wait for the cbc next week, then on Friday next week - off I go to see Gloria, Debs and Trish and when I get back again, the next pcr gets done. And then that three week wait starts. Maybe I will be good with that wait. Ya think? LOL

Big thanks to everyone who is walking this road with us - your love, support and encouragement really means so much to us all. I print out the responses for Steven and Laura and that helps them see that everything is, afterall, still on track. So far, this was just a little wobble - is that called a wibble?

Love and light and a gentle smile tonight

ps - hugs for Adam

Monday, June 25, 2007

An upward trend.........

A trend is what we look for in pcr results. Either up or down. It's up for Steven...... the trend is in the opposite direction to where I have been sending all my hopes, prayers and vibes. Here they are:

March '06: 0.13646%
June '06: 0.02868
Oct '06: Negative (qualitative)
Jan '07: 0.019%
March '07: 0.076%
June '07: 0.170% (back to square one and more)

So now we wait to see what Dr Druker's suggestion is, higher dose of Gleevec, changed meds, another bone marrow biopsy, mutation testings............. This is not a road I wanted Steven to be on at all.

This is not a road I want to walk, run or ride. Tonight I am angry. I am angry that a really good young man, with an attitude to life that I wish many more people would have, and a very positive attitude to this cancer, is having to deal with this.

Yes, I know there are meds out there that will do him better than Gleevec, that more and more reasons to be positive are out there, that............yada yada yada. Thats the logical side. Its the illogical side that's kicked in tonight. The anger. The disappointment and the bouncing marbles that turned to mush when I heard the results......

That's it for now. I will update again when we have more information on which road lies ahead now.

Love and light

Sunday, June 24, 2007

The Frillies

No matter how hard I try, I cannot stop the visiting 'frillies'. I find myself withdrawing from people in general, my emails stay unanswered for days even and I hear and feel myself going quiet. The normal things in life become a lot less important and I know I am not as connected to everything as I should be. I multitask all day long to keep busy - sitting quietly gives my mind time to wander - and its not the right time to let it wander around by itself at all.......
It happens, even though I sleep well and function fully. Its just that more and more of my brain is taken up by what feels like a million bouncing marbles and my stomach slowly becomes more knotted by the day.
But it will pass too and then the peaceful months will be here again.
love and light

Tuesday, June 19, 2007

Wibbly Wobblies of Waiting........

Ok - so I wobble slightly while waiting........... but I am still not quite wanting to admit it. When the time gets closer to the results for the PCR tests, I tend to read the boards more closely, tend to be more in touch with cml and then the idea of my kid having cancer tends to hit home again. Nothing like in the beginning, but still on the level of "Sh*t! I dont want this for him!" I get scared at times when I read articles that say that everyone with cml gets to a point where gleevec does not work for them any more - but then I read the boards again and I know that there are very many who are doing just great. There are always the difficult stories to read but fortunately with cml, they are so well balanced with the good stories

So its this enormous ping-pong match in my head, weaving through the thoughts and doings of the days and nights - even into the dreams at times.... Remember holding a daisy and pulling off the petals - he loves me, he loves me not. These days, but only on the worst ones, it goes PCRU, not PCRU, PCRU, not PCRU.......... PCRU PCRU PCRU!!!! I insist :-)

Today on one of the support boards, one member was apologising for "making a fuss" about her situation, which was and is normal in the first year especially. She felt that many others had much more to worry about than she does as her results are in the "really good and ok" range. To me there was no need to apologise at all, and it really made me feel 'normal' to read of her wobbles - she is almost on par with where Steven is as far as response to Gleevec goes.... It was good to see that others wobble over the tests results, wanting more, having to accept what it is. She helped me feel normal - thanks Jan!

And the days are creeping by until we get those results - wonder where my nails are going? LOL - I wonder how many years it will take before I take this in my stride?

I know I could and would not be anywhere near a smile if it were not for the people that are right alongside with me in this. Family, friends, unmet and met friends........... all are the building blocks to being able to keep my sense of humor going. And especially seeing how Steven is, emotionally and with the cml. I really am one very fortunate lady.

love and light

Hugs and thanks to Lisa B in California!

Friday, June 15, 2007

Talk about support.......

This is a picture on the Yahoo Asia Support Group .......... it brings a smile to my face and peace to my soul every time I look at it. The idea of having so many others all right there, all around the world fighting for the same thing is simply wonderful.

Technology has not only been amazing in finding the treatment of cml - its also created a place for us to share our experiences, thoughts, fears and happy times in an enormous pool of very caring people - the support boards online. It's brought together people of all cultures, beliefs and races from all over the world and shown that caring and love really is what makes us all function at our very best.

A big thanks to all on the boards who share their experiences and generally hold hands with everyone on this road - you are all helping my peace of mind and therefore, helping Steven with his healing too.

Love and light

Thursday, June 14, 2007

The good days......

I have been not-so-gently reminded to update the blog........ thanks Serena! :-)

Life is going on in what is as close to normal as I can imagine. Yes, cml is definately a part of it... in a very strange and unexpected way, its not an unpleasant part of it either. My days include regularly keeping up with so many others that are also on this road and some that are battling different types of cancers. I find this as important a part of my day as the first wake-up cuppa coffee in the morning.

So, Steven's tests. Well, he had a cbc - complete blood count done when he had the blood drawn for the PCR that goes to Oregon and that came back pretty much perfect. His white counts have settled at a reading just below the 'normal' range but they are constant so we dont worry about that at all. Two of the other readings were a decimal point away from the normal range - all ok. And the PCR? The waiting has not stopped yet. This is almost week two over and done with, and I am not worrying about it, actually have not much thought about it much either. At times it pops into mind that my child has cancer and then I am awed by how research and development and giving and determination by some doctors and an incredible number of people has directly enabled my child to live a very normal life. :-) Therefore keeping me.........well, I was going to say 'sane', but I know a good number of people that would disagree with that, so let me just say that its allowed me to continue with my life as well. For this I am so incredibly thankful.

Tonight as we were rambling around the front garden, Steven and a friend drove up the road, stopping at the stop street right at the corner of our property. We exchanged some words that I am sure neither side could hear properly, but we could all clearly see that smile and hear the laugh and the fun heading down the road.. It's good.......... its really good.

I will, I promise, update this blog as soon as I get the PCR results - and thanks Serena for caring enough to bop me on the head! :-) It really is love that keeps the world turning, love and caring...
Love and light

Special hug to Shireen and Wendy! I am so happy with the good news!

Monday, June 04, 2007

Funny thing happened.......

I stood over the bathroom basin this weekend to trim my hair. When I was done and I scooped the hair out of the basin - it was my mothers hair!
Time flies.

Sunday, June 03, 2007

Friends and laughs..........

It's Sunday, so late this afternoon I called Steven again to remind him to pick up the box of stuff for his PCR test tomorrow. "What box?" he asks. "I have a blood test tomorrow. Really?" I laughed! It's wonderful that he forgets... I know that some of the forgetting can be put down to the gleevec fog he suffers from, although I think Laura 'suffers' from it more than he does - having to remind him of things all the time! Him forgetting also tells me that he is not concerned about this all the time, although I know that the time will come when I will hand the reminding over to him and therefore, Laura, to deal with. But for now, its just fine the way it is..... :-)

So he stopped by to pick up that box that lurked in our little fridge in the shop and we had a lovely hour or two just chatting about life and stuff and being totally normal and relaxed. Its wonderful to see the smile that comes to his face when he shares his future plans, his dreams and wishes. He is pushing overtime now too, always keen to volunteer for any extra hours available - it all helps towards plans they have and the dreams they dream. It's SO good to see.

I know I am the luckiest mama on the face of this earth.

On another very exciting note, I have made plans to go out and meet some very important people in my life! This July, I will fly out to meet Gloria in Denver, Debs in Seattle and Penny's sister, Trish in Canada. These are just three of the people that have kept me sane, helped me keep my sense of humor and who I really want to spend a few days with. Although I met all three these amazing ladies though cancer, this is not a 'cancer trip' at all - its a frienship trip and I expect to have an absolute blast with many, many laughs - all 10 days of it. And, another bonus is that Lottie, a truely amazing lady with whom I have been chatting with for a good while now is heading up this way at the end of this month, so we should get to meet as well! She has been an inspiration to me since I heard her cml story and its going to be wonderful to meet her :-)

Except the flying. Flying is unnatural to humans. And I have voluntarily paid for a frightening number of take offs and landings and hours in the air! I must be nuts........ but these three are really worth it! LOL.

Life is really good right now and I treasure each and every moment of it. We are planting vegetables in the garden, babying fruit trees and putting in a wooden fence - all in this unending heat of pre-summer. The computer shop is doing wonderfully, Steven is looking and sounding great, the girls are doing what young mothers, Marines and young wifes do - and looking good too........

I have been thinking about how different people are different things to us in our lives. I never really thought of it before like this but with Steven's diagnosis many thoughts have come to the front of my mind. I have cancer friends and non-cancer friends and then those that are both. Debs is the one that is most able to share my 'scareds' and joys at good results, but cml is definately not the center of all of our communications at all. Each and every one of the people in my life have helped me be who I am this very moment. Just because someone does not understand my fears, or simply does not know how to talk about cancer, or does not want to talk about it - does not mean they are not playing a part in this road we are all walking with cancer. They are the 'normal buttons' in my life. Totally priceless :-) It's also wonderful to see how people that were purely cancer-friends, have now become true friends, way above and beyond cancer.....but without the big c - we would never have met. Life is indeed weird and wonderful.

Frank is my main "normal button'. With him, I can cry, rant and rave or simply not talk about any bit of cancer and or cml at all. He has the ability to stay the same, upbeat person, comforting me through my rough days (there are not too many of those around anymore) and always managing to get me to carry on laughing, to see the good side and to re-instill the hope I know is there. I am 'just me' with him. It's wonderful to have what feels like a rock solid foundation in him.

Just last week I moved the box of tissues away from the side of my bed, and I have a wish for everyone - that your tissue box is faaar away from your pillow! No night-time tears. A sincere wish.

Love and Light

and a cyber hug for Davo's mom.........