No news yet..

The wait goes on
Steven looks great and his attitude and sense of humor are wonderfully intact.
So all is good :-)
Love and light
Annie
XXxxxxxxx

The wait - again

Yes I am wobbling again. Yes this is scary - no matter that it is not urgent, that there are other meds to take care of the situation if Steven is losing response to Gleevec. His counts should be going down, not up. This is not how its supposed to work, dammit! I find myself becoming frilly - short of temper and patience and cml is taking a firm hold on the main part of my days. The three week wait has started again after Steven had his blood drawn again for the early PCR on Monday.

There are still times when I get angry, well not angry, but......... yes angry at this all. Sometimes it's a selfish feeling, one that revolves totally around my life and what worries I don't want in my life - but it always comes back to that young man with the incredible attitude. Always. And then I get angry some more. Why him. Why not him ....... and around and around I go.

So Frank bought me the latest Harry Potter book for me to dissappear into... I used to read only non-fiction stuff, but now I find that reading the "impossible and the untrue" empties my mind and I sleep much better. The debates and conversations dont happen in my mind when I read non-serious stuff.............

Sometimes I wish I was inside Steven's head so that I would KNOW how he is dealing with this. Above all, I don't want him to be scared, but I know that that's not something I can control and its a totally normal thing to worry. I know that the not nice things I have had to deal with in my life have made me stronger - but geez, none of them were as deep as cancer! Hopefully this will make this son of mine stronger too and one day he will look back on this time and breathe easy.

So the wait has started again. May it be easy on Steven and Laura and may the result be in the direction that we so desperately want it to be.

Love and light
Annie

What a ride! :-)

These past two weeks have gone so fast - it almost seems like a dream already. I boarded that first airplane with a definately elevated heartbeat and sweaty palms and then when I sat down, discovering that I only had half a window, I thought that if Steven can handle this cml I can handle a simple seven flights! And I did. Apart from the take offs and landings I loved the flying, taking many, many, I mean - many! photographs, many with the airplane wing in it. The clouds were awesome, the views of the snow tipped mountains, the rivers and fields below - there was just so much to see! I even saw another airplane flying far below us in the opposite direction. The landing in Denver was bumpy - very bumpy, coming into Seattle was so beautiful with the volcanoes dotting the horizon and Puget Sound glimmering in the sunshine, flying over the Rockies into Alberta was simply stunning and the bestest (yup, an Annie-word) was coming into Chattanooga again. The sunset from up there was simply so beautiful that it brought tears to my eyes and then a few minutes later the lights of Chattanooga sparkled in the dark like gems winding around the river. Absolutely wonderful in so many ways.

I came into Denver at full speed and never stopped! LOL Gloria treated me to The Taffetas (60's musical) - and yes I sang along with a good 80% of the songs :-), The Titanic show was awesome, downtown Denver - fascinating, a proper High Tea, a pedicure - my first! That was truely awesome :-). We saved all her data on her computer, reformatted it, reloaded and made sure it was working again, all inbetween shopping, visits and many laughs and chats........ I think I can count the number of hours I slept on that weekend on one hand! And it was wonderful - simply wonderful. I was exhausted when I left Denver, but knew I would miss Gloria - and I do. She is a lovely lady with a twinkle in her eye - unless its 3am! LOL

Debs and I had met already and it was with a sense of peace that I saw her at the airport pickup place. She whisked me off for lunch at a beautiful resturant right on the banks of Puget Sound, where Seattle in all its glory lurked on the opposite banks while on our side things were quiet and gentle, with little rowing boats waiting to be taken out and a sailboat rocked gently across our view.

We motor-mouthed our way through the next few days - lunch at the Space Needle (the view was simply awesome!) the Pike Street Market, a walk through a stunning state park, a lovely drive to and from Bellingham, lunch with her two beautiful daughters - Laura looks so great and has and incredibly positive attitude not only towards cml, but towards life in general and the girls are so close and full of smiles and fun. We went on a short ferry ride too which was so refreshing too - I always breathe deeper when on the water. And we even had time to sit and share some photos as well.

It was so good to be back with another person that 'gets it' totally. This cml thing is such a big part of my life, but only another mom with a child having cml can really understand how deeply my joy and fears are so tied together, only another mom can fully understand all aspects of dealing with this on all the levels that we do as moms. I definately dont mean to put down others caregiving people with cancers, or other parents - but a mom does feel it differently. I am so incredibly fortunate and blessed to have found Debs, clicked with her and then being able to get together with her again now. She has been one of those people that have been instrumental in me keeping sane this past year and a bit.

And then I headed up into Calgary, Canada to Trish - Penny's sister. After rushing around seeing so many beautiful and awesome sights it was wonderful to be able to be quiet, relax and just get to know Trish and her 'other half'. Her sister brought photos from their trip to Egypt which enthralled me and got me interested in checking out many things on the web. And just when I thought I was going to really get some rest, Trish and Stu took me to the simply most awesome waterfall! A gentle river flowed over some lovely rounded rocks and then headed down in a beautiful waterfall - it all looked so peaceful until we headed down the very narrow, steep and winding, slippery path to the bottom of the falls........ I walked behind, watching Trish head down with her heart in her throat and could not help laughing at her. The 'hike' was well worth it when that cool breeze and fine spray hit us as we walked really close up to the falling water.....yes, we did have to head up that path again. Interesting, so say the least.....:-)

Then on to another beautiful waterfall - 133 steps to the viewing point. Yes, I did count them on the way back up and I had to count slowly to make sure I got it right - that was my excuse for going slowly up those steps and i am sticking to it! Of course I took many many photos and I had to laugh when I realised that my clicking finger was being matched by Trish all the way! LOL.

All in all this trip was a simply wonderful, exhausting, exciting and amazing 10 days with some really awesome people that are all so filled with love and understanding, fun and life. A really big thanks and heartfelt hug to you all! And its wonderful to be home again too. I faced a good many of my fears on this trip and through it all, Steven and all others dealing with cml and other cancers helped put my little wobbles into perspective. If you guys can deal with cancer - I can deal with my measely little (now gone) fears. Thanks!

Steven, you are still my hero!

Love and light
Annie

TIme to fly

Tomorrow midday I fly out of here to meet up with Gloria, Debs and Trish...... wow - the time certainly arrived with a bump. Yes, I am packed up almost ready to go, well - as far as the act of leaving is. I dont like flying. At all. And whenever we go away, I have to prepare in case something goes wrong and I don't make it back. So there are letters that I write, and re-write, then there are the instructions I leave and it goes on and on and I just have to stop, relax and know what will be - will be. I know I go overboard and yes, I even drive myself nuts doing this. :-)

As soon as I get back it will be time for Steven's re-test of the PCR and I have been very fortunate in the timing of this test..... mind you - nothing I do can change the outcome, but I could not be away when the new results come in... So all is good.

All three my 'chickens' either called or came around to say goodbye - such a good feeling. Its going to be strange to be away without Frank and I know that the time is simply going to fly by and I will have a blast.

So, until I get back
Love and light
Annie
:-)

Lottie's visit

What a wonderful visit this was! Lottie and Jimmy arrived on Monday early afternoon and we quickly twisted their arms to stay the night in the rv. Steven and Laura arrived after work and we all headed off for a meal at Applebees and some ice cream at home afterwards. Lottie picked up Steven's cbc that he had done that day and her comments about Steven's normal readings brought a smile to his face.

We had a lovely, laughing evening and I think Steven was given a lot of hope after seeing Lottie so full of life, laughter and mischief after 11 years of fighting cml and not ever getting even close to his response to any drug - so far! He could see that life does go on and I know he has heard that before from me, from friends and doctors, but here was a person really doing it and doing it very well indeed!

Lottie and Jimmy are wonderful, caring people with a beautiful sense of humor and a zest for life that is simply great!

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
Annie

ps - hugs for Adam

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
Annie

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
Annie
:-)

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
Annie

Hugs and thanks to Lisa B in California!

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
Annie

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

Annie

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

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.

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
Annie

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

Positive thoughts......

The UPS truck stopped here again today - but we had ordered nothing so for a few seconds, we were a tad puzzeled. And then out came that square box with BIOHAZARD written on it. Steven's blood test kit for his next PCR next week. Funny how a box makes my blood pressure rise. So now it sits in the little refridgerator in the shop, rather like a pouncing mountain lion whenever I open the door, with cowering bottles of water lying beside it.

There is something wrong having this stuff in my fridge! In anyone's fridge. The months have rolled around so quickly since the last PCR and there were a few moments here and there where I could almost imagine life without the worry of Steven dealing with cml. Almost. But now its back again, and although the test has not yet been done, the waiting has definately started. The stress is already building and I am determined to beat it this time! I will, I will........

Steven's March PCR was slightly higher than the January one but we think and hope and believe that that was due to the change in labs. So this test is one that we would reeeeaaallly like to see a definate drop in readings....... and we will get the results a month from now. Yes, a whole month. But I won't worry, won't fret, won't bite my nails or think about it too much........ oh suuuure! I just hope I won't do all that as much as I did last time - hope that my ability to cope with this is getting better. I feel that it is and I hope it gets better and better because that would mean that Steven would be doing just superbly! :-)

He is doing great right now, working hard and taking the summer off from college and still smiling that incredible smile. This young man is really my hero.

Now, on a very sad note. I had been following Davo's blog - he had cml and was from the UK. This Memorial Day morning he passed away. I did not know this young man personally, but through his writing and his blog he helped me see that I should see Steven first and then the leukemia. As hard as that is, Davo showed me how important it is to keep seeing the person first. His poem, the one that is a few posts below, really made a difference. Thanks Davo - I will always remember you, and when the cure arrives, I will keep my promise and send you a funky balloon!

I thought so much about Davo's mom these past few weeks. How she must be hurting, how she must wish so hard that this was not happening to any of them. I cannot begin to imagine how to deal with that. I don't want to even try to imagine, so instead I just try to send gentle thoughts across to them all... so little when they must be hurting so much.

And then I found that book, The Secret, and then a friend sent me the original un-dumbed down book from 1910 and the more in depth one from 1912. Its all about positive thinking and is incredibly sensible reading....... Only positive thoughts allowed from me for now - so you all get tons of positive thoughts - duck! they are coming! LOL

So, life is proving itself to be normal. Ups and downs, hurts and happiness, wins and losses, and never knowing what is coming next. This is life, and I still want to live it. Thanks for those words, Bea - they are so true!

Love and Light
Annie

Circle of Hope, Circle of help

This is really a very weird world, or is it just me? This week, with no immediate pending tests and nothing at all to make me lay in bed at night with saucer-like eyes at all, I actually started missing the early days of this cancer road. Now that shocked me to the core, but I have to admit that the intensity of life was incredible, everything vibrated all the way to my bones like overtight guitar strings. The frantic research, the insatiable need to find others with cml and other forms of cancer, to find out how one copes with this disease in my kid, to find out as much as I could, to try to stay on the sane side of life or at least appear half way ok. Penny and I had just met and we were starting up www.penniesforcancer.com, and learning how to say hello and goodbye at the same time. Steven, and the rest of our world, was learning how to relate to each other in this new life, this new reality.

Negotiating the medical terms and world of doctors and hospitals was, at first, tremendously scary, learning how to build websites and blogs and photo albums too accupied my mind at times. The trip to Alaska was turned into a fundraiser and everything that went with that, the idea of being away from Steven for two months, organising the house, shop, doctors, trip, kids and still having time over for Frank who took back seat and was the anchor I so badly needed. So much took so much energy and emotion, yet there was an unending supply of it. My stomach heaved, the tears flowed, my heart actually hurt at times and I even lost a few pounds!

Looking back, I know that I was so incredibly alive in spite of feeling as if I was dying inside, slowly and awfully. Its almost sad that I did not recognise just how alive I was at the time!

So how can I say I miss it? All in all it was a tremendously vibrant time - and yes, on some levels I miss it tremendously. I miss Penny and the laughter we shared despite, and at times because of, cancer. I miss the alive feeling, although I only recognised this feeling after the 'main trauma' was over. I know that I can look back on this and smile only because Steven is ok. Please God, may it stay this way!

Some people have their reasons for not sharing their story, sometimes not even with close family members and I send them all a very deep hug. I know that for me, its the people, the sharing that has kept me sane, kept me going. Those that share their cancer stories with me in the shop; those that put that dollar or three in the jar for the LLS that sits on my desk; those that write on the support boards or blogs; those that email and call me out of the blue with their happy news regarding tests of their daughter/husband or friend; those that are going through transplants and just as much - those that don't even touch on the cancer subject but who I know are there for me if I need them... These are some of the people that help balance my life, who are the glue for my soul - they have become the fibre of who I am and how I can and do give back when I can. There are so many people that pick me up without even knowing that they do and I am grateful for each and every one of them!

So here I am, another two weeks from Steven's next PCR that will again be sent to OHSU - the kit is ordered and will be here in time, I will not be going with him this time - its just a blood draw. Its the wait after this that is the breaker..... anyway - I got off track there. Here I am, in a really good place, able to give more energy to my life again, to my two daughters who have had to be very patient with me over this time.

I was thinking just the other day - so much has changed in a mere 18 months.. One child got cancer, one joined the Marines and got married, one got married and has a daughter, making me Granny Annie; we did 11000 miles to Alaska, have redone much of the inside of our house, have the pitter patter of four tiny little paws in the house too and we are all still smiling, despite the sudden appearance of a goodly bit of gray hair too! And the most incredible thing is that even though we now have cancer as a direct family member, we are all very grateful for the things in our life, we can all recognise that in a weird and wonderful way, this cancer has enriched and definately deepened our lives in a tremendous manner.

It's all in the people - that Circle of Hope - that Circle of Help...........THANKS! :-)

Now I am rambling. I am happy, I am thankful and I hope.......... oh, I hope for so much.... And I KNOW there will be a cure for cml!

Love and light
Annie

ways of thinking.......

The other day I found a blog written by an incredible young man. He wrote this poem below that made me see things in a much better light. When Steven comes in the door, I do my 'mother-scan'. I check for signs of the leukemia, I check for symptoms and side effects - and then I see my son. Now, thanks to Davo - I see the importance of changing that, and changing it now. I need to see my son in full - but as Steven first, not leukemia first. Thanks Davo! I think you are incredible, for many reasons.
(Davo has given me permission to share his poem - I hope it helps someone else as it has helped me)

Thursday, December 7, 2006 - by Davo

You look at me

But you don't see me

You see a pale face

A bald head

A scar.

Look beyond my hat.

Look beyond my illness.

Look into my world.

See the many pieces,

not just one.

A complete person.

Open your eyes

And see me.

http://davidthewicked.blogspot.com/ Visit Davo and send him a hug, a warm thought, a prayer and strength for the road ahead.

I have left keeping on top of Steven's test results alone for a while - now I am back again - gotta be... his last test was great but the bigger three month test is looming again next month, the PCR - no rest with this cancer. Every three months the test tells us if life goes on as normal or gets turned on its head.

January result was good, March test was a little less good but we started testing at a lab in Oregon, this next taken in a months time is kinda critical in telling us where the cancer is going...... my nerves are already getting raw from it again. The blood will be drawn at the beginning of June and it take 3 weeks for the results to get back to us. My real hope during this waiting time is that the waiting does not tell on Steven as much as it tells on me.

Tonight I am in a 'patch' again.... I have to update the blog - and open my soul on there - it feels so selfish sometimes, not being the one with the cancer, but I want to keep it honest - from this mom's point of view.

PCR results this year so far are:

5th Jan '07: 0.019%

5th March '07: 0.076%

We really really want the next PCR to deliver a number below this last one.......So far Steven has only a 1.7 log reduction after a year of treatment - we would love to see that 3-log coming his way. If not, the treatment will be changed/altered and then I am sure we will get that much sought after 3-log.

I have found that reading other blogs help me tremendously. Jon G was diagnosed right at the same time as Steven and when I read how well he is doing, it puts the hope back in a wobbly day. It's absolutely wonderful how each person out there helps others, so often without even realising it. Read Jon's blog at: http://www.jongershon.blogspot.com/.

This circle of people dealing with cml is honestly amazing - I could never have imagined the help that is out there 24/7 - in blogs, posts, news groups and the wonderful people that email and call.

I had so much to say - so much to get off my mind, but with losing all my writing not once, but twice! tonight and because I have to be up really early tomorrow for painting class again, I am going to close this off and hopefully tomorrow I will remember what it is I wanted to write here tonight :-)

Strange - I started writing with a heavy stone in my stomach tonight, thinking of those PCR's, and after reading that poem again and pouring the worries into words, I know I will sleep well.

Thanks again Davo. You remind me of Penny - your incredible strength and concern for others and your ability and willingness to share, in a time like this...

Love and Light

Annie

www.penniesforcancer.com

Natures lessons......

This past week we have walked the beach till we look like crayfish, climbed a lighthouse - all 178 steps up and 178 steps down!, picked up coral and shells, cycled all over Tybee Island and toured Savannah by horse drawn carraige, just to mention a few things......... and cml has finally taken a backseat in my mind for a good few days.

This does not mean that I have not thought of it, I have. I have realized that to not think of cml would be abnormal - its now firmly part of my life, as much as Steven is a part of my life. It's really good to see that a mere year after Steven's diagnosis, I am dealing with it all in a much better way than before - it feels healthier and so much easier on me and everyone around me.

I know that this is able to happen because Steven is reacting so well to the meds, and I treasure every day without a cml wobble.

Walking on the beach I watched a seagull hanging in the wind, just a foot above the sand and thought of all of those with cml and all their caregivers - just hang in there! Hang in there, the wind will pick up and we will glide again........ I saw a big bubble in the surf and could see the shells through that bubble as well as all the other shells and it made me think of how we sometimes see life - through a bubble without seeing the full picture.

And while writing this about how good I feel, how wonderful Steven is, in the back of my mind is the cbc and doctor visit coming up in the first week of May... May - may it all go very well, may, may his bloods be perfectly on target or as close as possible, may he feel great and may the doctor have done some more reading and learning and may Steven have a great visit! And may the next PCR in June keep the positive side of May! The month of May......:-)

Tomorrow we will walk the beach again, find more coral and I will get even stronger in my resolve to live with cml in my kid and in my life. I will get stronger in my resolve to be stronger for Steven, I will get stronger in my resolve to be the very best I can be and, oh please God! - to learn how to find the strength to find patience while waiting for those flippin PCR results!!

It's wonderful to see in nature, the lessons I can use in my life to get stronger, to hang in there and to see more than just that bubble we all live in at times......... There is another one that made me think of this all....... there is a pole on the beach that has barnacles growing up it to the high water mark. This pole had barnacles as high as I am short! All 5.4ft! So here are these tiny little barnacles in this enormous ocean, finding a narrow little pole to cling to, but then the water is swept from under their feet............ and they cling tightly way up in their sky, hoping like heck that the seagulls don't get them or the sun does not bake them dry, waiting for the water to come back and give them what they need again......... And the water always comes back.

I see a lesson in that too, but its late and I need to get some sleep........and to think of that one some more.......

Here is a really special thought to little 7 year old Sarah, just diagnosed with cml, and her mom. Hang in there, mom, the ride does get smoother.......

Love and light

Annie

How we fight.........

I think that the worst thing with this disease, is that there is nothing to do! Now that the diagnosis is over, the game plan in place, its all just waiting. Endless waiting. Its not like other cancers that can be treated and then 'cured', a 5 year "if nothing happens then you are ok", time period. With this one there is nothing to do. Thankfully it seems so easy, simple and fortunate. And I hope it is. I really hope it always is. Not only for Steven, but for all those that I follow on their blogs and on the support boards. Its difficult to read about the 'bad things' that can go wrong, hard to read about those that develop the complications, mutations and horrible side effects. These just reminds me that there could be bad days ahead when I will be wishing for nothing but this nothing-to-do-but-wait time..

I wonder if I think about this more than Steven does? I mean, do I worry more because I do the reading, researching and hearing what can go wrong? If it is this way, then I am glad its this way because it will give him a few more years to concentrate on the other stuff in life.

Yesterday it felt like ages and ages that he had last had a blood test done - its only been 5 weeks! When it feels like this, then I want to see another cbc in front of me. I want confirmation that everything is ok. But his next appointment is only in 2 weeks time and I will wait, and try to put this at the back of my mind as much as possible.

I am not down or worried or anything at all at this stage - just writing my thoughts. The other day I read something about cml moving very fast to aml in some instances. My heart dropped and I stopped reading the board for a few days until I could put it all in perspective again. I think thats what I am learning to do more than anything.... put things in perspective. Steven is doing great and I don't have a reason to worry at this stage - well, not to spend too much time worrying unnecessarily, although that's so much easier to say than to put into practise much of the time.

I do find that the days go by and my mind touches on cml at odd times, but more often now I think about the positive side of things. I love how Steven has grown, I love the changes all this has made in my life, I love the smile I see in the mirror again, I love the people I have met and are still meeting, in this short year and I simply love the good warm feeling I get when I find a penny! So much positive has come out of one short year with cancer.

In writing this I have discovered exactly how we must fight this cml battle - we fight it with positive thoughts, positive smiles, positive people! We fight it with love and understanding, with caring and listening. We fight it with courage and all the time we are allowed here on earth.

And we fight it together with all the others out there that are fighting the same and other battles. We will win. I insist. We will win.

Love and Light
Annie
X

Today I laughed.........

I thought I was a fairly normal person, dealing with life in a good and normal way.... well today that changed - I know I am not normal at all! I told my DOG to say goodbye to a customer! LOL.

Today my daughter and granddaughter were here, my mother and my sister. We had a good few sick computers in the shop and then one of our customers came after hours to pick up some business cards I had made for them......... I started off by showing off the photos I have taken of McKenzie Rose - "ooohhhh, look at the dimple! look how pretty she is", general coo-ing that all grandma's do :-) and then when she was walking out of the door, the doglet in my arm, I told the dog to say goodbye! Phew, what a moment that was as I shut the door, laughing at myself. I, me, Annie, actually told a dog to say goodbye! She is a cute, little sweetie pie of a doglet, but still a dog.....

Ok. So I have since decided that its ok not to be normal. I have never been normal. Normal is just a setting on some or other electric appliance. Do I really want to be normal? Not any more :-)

I am still nervously contemplating at what I am becoming, a coo-ing grandma, a more relaxed mother of a cml-er and a dog lover! Dang - when did all this happen? It feels............ not bad at all!

With those content thoughts and smiles I will get today over with and go lay my fast graying head down on my pillow.

Love and light
Annie

Some days

Some days are like these last two. They are horrible. I was looking at photos of Steven when he was just a small little boy, and I could not help the tears and sadness. I read on the support board of a rare case of cml turning into aml and I listened to an aunt tell of her 24 year old nephew dying of aml. I flippin cry! I look at recent pictures of Steven and I find my eyes leaking. Its not always like this, most times I can convince the most active part of my brain that all is ok, but not these last two days, for some reason. It feels like all the glue is coming unstuck inside of me.

I know things are going well right now. Steven is doing well and feels good and everything but that is not the point. That is not what is going on inside me today.. As much as this is Steven's cancer, these feeling are mine and they are terrifying.

I don't want to read the support boards these days - I dont want the bad to relate to Steven at all, I don't even want the good - I just want it all gone! So? I am having a floppy fit........... It makes me really so sad. Everything in life is tainted with this cancer. Nothing untouched.

The other day I started reading this blog from the beginning- I could not do it. I realised that there is so much to process, so much that I was not even able to write about while it was happening. Many of those things come back to me now when talking to others with kids, family or friends with cancer. I think that if we had to think about how to cope, especially in the early days, it would be almost impossible. Looking back I can see that I worked on auto pilot for many many months. Actually, I started thinking again after we got back from the road trip in September. It was then that everything had quietened down. The excitement of meeting Penny and Debbie and the idea of another road trip as well as the initial scare had evened out, the organisation of the fundraiser, the wrapping of the rv and everything that went with that was over. Even setting up the PenniesforCancer.com website was done with - Penny passed on and everything became very real, awfully real. It became a new normal again. One that I have obviously not mastered yet.

Right now I feel like there is a very flimsy gate holding back another flood of tears. What is the matter with me? This is a year old already - why am I not getting used to it? Maybe I am, but it sure does not feel like it. What does Steven feel? How do I ask him without getting him to think about it all over again - but that is nuts, because it is part of him so he won't have to be reminded about it - its already there.

After just a few emails a few moments ago, I feel SO much more in control and ok. Debs is a treasure - a total treasure and its amazing how when I needed a hand holding/butt kicking to pull me out of this self imposed misery, she was right there - all across the continent, but right there! Just two emails later and I have a genuine smile on my face and in my soul - the first in way too long. I bet Frank is going to be relieved too! Thanks a million, Debs - you really are a treasure. :-)

So, on a much happier note, and feeling a bit like a wimp, I am going to hop into bed and enjoy the good thoughts, amazing people and happy moments in my life.

I am torn between writing only the happy stuff, the surface stuff, reporting the facts, but that would not be real. I started this blog to help me work out some of my feelings. The cancer is not mine, but these feelings are and this is my way to get them out so that I can deal with the whole situation in a much more controlled and mature way. I need to get those floppy fits out of me. This is my way. Some people might think that I am making Steven's cancer about me. I am not - although I wish I could take it from him. I have to acknowledge my feelings, all of them, in order to get on with my life and I think that it would be awful for Steven if he managed to get on with his life, but saw me not coping with it all. I cannot do that to him. So this is my way of staying strong for him too.

I know tomorrow will be better - today already is.
Love and Light and laughter.
Annie

A good day.....

We got Steven's results from OHSU today......... PCR 0.076%, a 1.7 log reduction from OHSU baseline. His last PCR reading from January was 0.017% but we expected this increase due to it being the first time we have sent his blood to OHSU and them being a much more sensitive testing than the other labs that have analyzed his blood before. I am not too concerned at all at this upward wobble and trust that it will come down again the next time. I insist. :-)

His dr said that he has been doing 'a lot of reading lately and by all accounts its not necessary to change Steven's dosage of Gleevec at this stage' and he will be quite happy, as we are, to wait for the next PCR before even thinking of any changes. I like that he is not only reading, but willing to tell us that he is. A big change from not too long ago - he is starting to win my confidence.

Steven is doing great with almost no side effects and is looking great!

The specialist from Vanderbilt in Nashville also called today to tell Steven that they have found a 100% donor match for him! After asking how Steven was doing, he also agreed to no changes for now and agreed that a bone marrow transplant was not the right option for Steven at this stage. Steven says that he will not have a transplant, so they are wasting their time looking, but he totally understands the plus in having such a good match! Hopefully this is one of those cases where thought makes reality - none of us want him to have to go through a transplant and if we had anything to do with it, he will stay on this dose of gleevec till a cure is found!

So all looks good right now. I can breath again and I felt the tension seeping out of me this evening. I did not realise just how tense I had been the past few days while waiting. And Steven? Each time the results come in, I can hear the relief in his voice and the smile that fills the place where his tension was is simply lovely....

Funny how life is divided into three month sections these days and now we start the relaxed part of this quarter. :-)

Waiting

Every time Steven has a test done I promise myself that I will not get freaky, that I will cope better, that I won't worry, that worrying wont help anyway - you know, all those sensible thoughts........ but the waiting becomes old, very old. The fears and what-if's eventually creep back in and the black circles grow under my eyes again. Unfortunately the fat does not melt away from my hips, but I definately do become more stressed.

I find myself withdrawing, going quiet, turning into myself. I find my emails to my friends and family becoming shorter and it becomes harder to concentrate on anything for any length of time. I find that cancer is everywhere and the last week of the three week wait for results is the week that I get angry again. Is it scared or angry? Dunno - I have not yet figured his out - but have a flippin good idea that its at the very least, both.

So this morning I called the doctors office to see if OHSU had sent the PCR test back yet and they called back late afternoon telling me that the test had just arrived, but seeing as Dr J was not in the office, he would have to call me tomorrow. Thats enough to reduce a semi-sensible woman into a pleading, begging fool! But I didn't. I said I would wait - like I had any choice anyway! And went to make sure my cell phone is fully charged...

Yesterday it was easier to wait. It was easier when I thought the test was not finished, but now that those numbers are here in Chattanooga, I can feel my whole body is more tense than 3 seconds before that phone call earlier today.

What is, is. The test results are what they are, no matter if they are in OHSU or here - but knowing that does not ease the anticipation. At all. We are expecting a slight jump in numbers because the OHSU lab is more sensitive than the one Steven's blood had been going to before - and I know that is going to make me worry a tad, even though I know that its all ok.

There are days that I simply hate cancer. This is one of them.

Tomorrow WILL be better.

Love and light.
love and light................

Tonight's Reality - I am a granny! :-)

Introducing Lisa, my daughter, and McKenzie Rose, her daughter and Brian, proud father...... :-)

Reality, at times........

Today I read about people losing the fight against cml and I don't want to hear it. I don't want to read it and I don't want to believe it. The click of a mouse can take it away from my eyes, but those people, those families will stay in my head, in my heart. Especially when I lay down and its dark and its quiet and the night stretches long.

Reality, at times, is too strong, too harsh.

I want to believe that Steven will always be fine, that no mutations will develop that no complications will arise and that Gleevec will always work for him - until the cure, of course. No hiccups, no worries and no problems. I want to believe it so hard that I can almost believe that my believing it, will make it happen. Almost.

Where is that perfect world? Where is that place that I can lie down and just know that things will be great? I know there is no such place, but I wish..........

It's 'waiting for test result" weeks - again. They do get easier, but they are still hell. At times. Especially when I read about people dying from cml and dying young.

It makes me so sad to hear that. So sad. It makes me so scared to hear that.

And a friend's daughter was newly diagnosed with cancer, not cml but still. Another mother worries, a new cycle has begun. Another family altered, cancer now living in yet another household.

Maybe Steven's results will be in this week and the demons will lie down again. For a while.

But the hands that hold mine are holding firm and the strength flows strong back and forth through us all..... Thank God for this!

Love and light - and laughter.......
Annie

No wobblies

I know there is stuff to write but its not flowing at all. Year one has passed and we are all moving forward. That rose bush grew at an incredible rate and needs trimming again - this time with gloves and cutters - not bare hands. Steven looks great, my girls are wonderful, we are working towards another roadtrip, maybe and taking doglet for 'practise runs' in the pickup and this weekend in the rv.

Steven had his blood drawn and sent to OHSU for his PCR test this time. This is the way we will be doing it from now on which will give us a lab with a known and reliable baseline to work from. We will hear around the end of the month what the results are but I refuse to wait for the results - I will live till they come and then, whatever they are, carry on living!

I asked Steven about taking his gleevec and both he and Laura said that he has only missed it once - right in the beginning months and once he forgot whether he had taken it, so took another in the morning being over cautious. I have to admit that this brought a smile to my heart and soul. I have stayed away from asking too much and definately from reminding him about his meds. He has a spare bottle of Gleevec that we got from a lady locally that also has cml but is now on Sprycel. Yes, the bottle was sealed and within its date limit. This gives Steven a day or so break around the time he has to get the new months supply just in case he does not get them on time.

He had a cbc too, but I have not remembered to get the doctors office to fax it to us yet - maybe I will remember Monday. This tells me a lot about my dealing with Steven's cml. Forgetting to get the results for three days in a row?? hmmmmmmm. I must be less freaky about it - strange how that crept up on me. But come Monday, I will get those results faxed :-)

So, no matter how deep I dig right now, there is nothing dramatic happening, no wobbly feelings and a knowlege that things will be what they will be. I am having a tremendous amount of fun with my new Rebel XTi camera and its incredible to see what that macro lens delivers! Whole worlds of wonders that we never knew existed.......

Thats me for now till more news happens :-)

love and light

Annie

ps - hello Serena!

The first year is over......

Something really great happened last week. Penny's newest grandchild was born, she is absolutely, beautifully gorgeous, and her name is Penny Lee! ..... A few tears leaked out when I looked at the pictures, I know Penny would be so happy, so proud and I can almost see her smile. Penny did not just smile, she beamed, she oozed that smile and the happiness she felt when she was smiling. And Little Penny would have brought that all-incompassing smile to Penny's face.

This week has been a week of thinking, playing things over in my mind, remembering and wondering about all the changes that have happened in one short year. Yes, this week it has been a year since all this started. This time last year I was trying to pull a rose bush apart barehanded, this week a year ago Steven was pale and scared and feeling really sick, knowing that something was not right, but not knowing just how wrong it all was. I went back and re-read some of my writings from those days. Its made for an emotional week all in all.

For this one year celebration, what does one do? Bake a cake? Send a card? Or let it go quietly by? Is there any protocol for this? Is there any right or wrong? I know it depends on Steven and his feelings, but I cannot just ignore it - its the elephant in our lives and elephants dont get ignored very easily. Someone lovely passed on some good advice that she was given once - "Eat the elephant one bite at a time so you dont choke" I still smile when thinking of that one :-) Back to the one year mark...... celebrate? how? I will talk to Steven and Laura and maybe they can come over for supper and some good desert.........

We really do have so much to be thankful for. Bad things do happen in life and, especially in our situation as it is right now, it does not help to keep harping on the fact that he has cancer. We have to find a way to move forward, which we have done pretty well, I think. Steven and Laura were here the other night for supper and he looked better than I could have dreamed. His color was great, his smile beautiful, his attitude positive and his eyes shining. Laura and he are really lovely together, they kid around, laugh and smile so easily with each other......

Of course I did my 'mother-scan' as he came through the door but I managed not to ask him how he was feeling, managed not to hover, managed not to even broach the cml subject and managed not to ask him if he took his meds after supper. Tell me I'm good! It was difficult, so difficult but worth it as I saw him relaxing more and more as the evening went on. I dont want him or Laura to feel that everytime they come here, its all about cml and by not always talking about it, I hope they will see and feel the confidence I feel about everything continuing so smoothly.

It's only if I wake up in the middle of the night and cannot get back to sleep that my mind goes down those bumpy roads and its oh-so-difficult to get myself not to think of the 'what ifs'. When I read the support groups, I choose carefully the subjects I read - it won't help if I worry about mutations and trials and stuff unless we have to deal with those things one day. It's not always easy not to worry, not always easy to always be positive but I do feel we are all getting better at it.

A year ago our worlds were falling apart, now Steven is much better with the disease under control, he is really learning to live his life and he has coped with all this so incredibly well. He and Laura are doing wonderfully by all appearances and they are both so strong. I have gone from a total wreck to someone with a whole bunch of incredible new friends, some I have met and some not and some that I wont see again, but they are all so much a part of me now. I have learned to focus on the important things in life, not sweating the small stuff, as the saying goes.

What a year it has been. I honestly think a true celebration is in order on 6th March 2007 as a year that has helped us all become better, more understanding people and, of course, for Steven's health!

Steven will have another PCR test this coming Monday and his blood will be send across country to Oregon - OHSU for testing. Then the three week wait begins. And I just know the results will be good. I insist :-)

Everyone reading this is a part of the healing and coping process we have undergone. All the caring and kindness, understanding and contact has made it possible for us all to move forward. Thank you, thank you from the bottom of my heart.

Love and Light
Annie

dancing..........

Sometimes one just has to dance, then the lights happen and the smile arrives and life is good again.

Just dance and let it happen.

Feeling better......

For a couple of weeks I have wobbled between worrying, being frustrated, been angry and putting cml totally out of my mind (ok, ok - I tried anyway). Its been a strange couple of weeks but all in all not too bad - from my view anyway - now, ask anyone around me and you might get a totally different answer! LOL

Finally Dr J called me back. I had left a message for him last week but he was out until Monday. He graciously called back on Monday evening and I started on my list of questions....... Dr J said that the specialist, Dr K at Vanderbilt in Nashville, says that there is no need to increase Steven's gleevec dosage - keep it at 400mg and re-evaluate the results after two more PCR results in six months time. I started smiling again. Then I asked him if he was open to having the next PCR send for procesing at OHSU in Oregon - Dr Drukers lab. He was wonderfully open to this and we agreed that I would get the kit sent out and we would do the next PCR early next month - on his one year anniversary of cml.

The lab that his blood was being sent to, has no baseline PCR value which then makes it difficult to work out his log reduction. Now that the tests will be done at OHSU we will have all the information we need. And at this next appointment Steven will have a few extra tests done with the regular ones, just to check his liver function and ........ ah, its late.......... stuff.

So, after worrying, being angry and being really frustrated I now find that this doctor is more than willing to work with the specialist and with Dr Drukers team. I also find that Dr J is willing to listen and adjust and hear what I say, not dismissing me in any way whatsoever. Maybe he is not fully informed or up to date with everything new in cml, but he sure is not afraid to work with those 'above' him..... This is tremendously comforting.

I know that I have not been easy on him, and even during this last conversation we had on Monday night, I did not let him off the telephone until I had my questions answered. It really was a really good discussion.

So after e-scheduling Stevens appointment for early March rather than in May, I called the OHSU lab to get the PCR kit sent out here. What an easy process that turned out to be. The gentleman there was friendly, knowledgeable and so sweet. The kit will be on its way soon and we will have to keep it refridgerated until taking it to the doctors office. Then it will have to be sent overnight via UPS to OHSU to get there the next day. Or else. Or else it will have to be redone.........

So I scheduled an early morning appointment with Dr J and the blood draws, after which I will come home with my kids blood in a package - again, and then UPS will send it on its merry way. OHSU even has tracking numbers via email so we can see that it comes here and gets back without a hitch - or at least we will know of the hitch if it happens.... which it wont.

I have learned SO much from the Yahoo Asia Support group and everyone on there through public postings and private emails. They keep me going, keep me working at getting things running as smoothly as possible and really give me courage to keep tackling the issues that bug me. Another thing that really helped so much was that book that Lottie recommended - The Patient From Hell. He gave me the final push I needed to state clearly what I, as a caregiver, needed from the doctor, not to give up, not just to accept what was said and to pick my battles........

I know that we are all incredibly fortunate that this cml in Steven seems to be 'under control' at this stage. That does not stop me from 'scanning' Steven each time I see him, it does not stop that sudden gasp at times when 'scared' hits my stomach or that worry that creeps in when I read of some of the problems that others are having. It does not take the cml away. It increases my dreams of a real cure for all these people going through this on a daily basis, it makes me more open to holding the hands, if I can, in any way of those on this journey that need that - or just sharing my feelings in the hope that they can find some comfort - in whatever way possible.

Its almost been a year now..............

love and light
Annie
***HUGS***

Been quiet

I have taken a few steps backwards over this past week - I was not dealing with things in the right way and getting way too frustrated. So I let everything drop for a while. Fortunately there is no problem letting things lay for a while, we are really so fortunate that every decision is not time critical with Steven's cml.

This week, slowly, I have been picking up the strings again. We will now send Steven's blood to OHSU in Oregon for PCR testing. Then we know that it will be analyzed to Dr Druker standards and not a lab that does not know what a baseline value is.

I have a long list of questions for Dr J when I can get him on the telephone. I hope he will be able to answer some of my questions and help point us in the right direction. I sent Dr K at Vanderbilt University Hospital an email with some of my questions, but he has not yet answered. Again, I am thoroughly grateful that the answers to these questions are not time critical.

The more I try to get answers to my questions, the more I try to find a way to calm the fears that keep popping up, the more I am so incredibly grateful for the support groups online.

I feel much calmer than last week - thankfully :-)

More later.
X

Results.. and more waiting.

I have not written for a few days since getting Steven's results and that's probably because although I have the results of his PCR, I am not sure where we are going from here. The trend is still downward - with a reading of 0.019%. But. Dr J says that he thinks they should increase the dose of Gleevec to 600mg. He is waiting to talk to Steven's specialist at Vanderbilt and I am waiting to hear Dr Druker's view. His first PCR was 0.13646, 2nd: 0.02868, 3rd: 'negative', this one: 0.019%. It's going down!

Waiting. At times this is worse than facing cancer itself. The waiting eats me up and leaves me drained. It's something I had better get used to............

Although the downward trend is good with these PCR results, apparently it is not a big enough log-reduction at this stage. AAAARGGGHHHH! My personal feeling is to keep going on 400mg until at least the next PCR in three months time and to see whether the slide downwards is faster by then. When he had his PCR in October, a qualitative PCR was done and it came back 'negative'. I was not happy with only getting a "negative" as a reading although the doctor said that that was sufficient, that as long as it read negative it was ok and we did not need to see the numbers. Now that we do a quantitative test and the numbers can be seen, now he is talking about upping the dose? It does not make sense to me. At all. If we had done another qualitative test, that would also have read negative. And then what would his reaction have been?

I wish I had a feeling of being able to leave all this up to the doctor, but unfortunately I still have this incredible need to check up on and second guess, research more and get other opinions as much as possible. When Dr J first called me with the results, right after telling me the results, he started talking about a bone marrow transplant again, asking about matches. Even now, my guts churn in my stomach and I feel my breathing coming faster when I think of this option.

The information I am getting/reading/hearding says that these PCR results are ok - not absolutely fantastic at all - but definately going in the right direction and definately at the very least - ok! Many many people take many years to reach these readings. WHY is the doctor talking BMB's and increased doses? I don't get it.

I wish I did.

I don't.

It drives me nuts.

Every three months I become a true Gemini - dual personalities. I function on one level between the PCR's, trying and pretty much succeeding to keep everything normal, work, play, move forward etc etc. And then 'test time' comes around again. When the results are good - its great, but now when I feel that the doctor is wobbling between treatment options, my second level of functioning kicks in. The worry runs like a river below the surface again, making those rocks green with algae and slippery as hell, and I have to fight to keep from slipping into that full worry mode.

I have to remind myself constantly not to keep talking about this when I talk to Steven, at least until I have something definate from the doctor/s. He knows I will be honest with him, but he needs to move forward as strongly as possible, and not be dragged down by worry until its necessary or not. He knows I do this and its ok from both our sides.

The stress for me is something I have to learn to deal with. So often I have thought I have it under control, but then I realize that I don't, not really, and especially not during 'test times'. I really, truely, sincerely hope that Steven is able to move forward and around this, more than I am - especially around test time.

Some good news! We have collected another $1040-00 for cancer research through our www.PenniesforCancer.com website !!! May every penny be blessed and do something truely wonderful - just as Penny did.......

How can I not see life as simply beautiful when this is one of the last things I see before going to sleep ....

Love and Light
Annie
x

Odd happenings.......

Steven went for his PCR earlier this month. The onc called on Wed evening to tell me that "two of the three tests were negative and the third 'only a little bit positive'". I confirmed with him that it was a quantitative PCR we were talking about, he said yes and said that the results of 'the third test within the main test' was 0.019% and asked whether we had a suitable bone marrow donor....

At this point I just asked him to fax me a copy of the results this morning. A blank fax came through so I asked them to re-send. By midday when I had not recd them yet, I called again. They were obviously irritated with me this time saying that the results would be faxed today. By 4.15pm (they close at 4.30pm) when I called again, they said that the doctor had not signed off on the results yet and thats why they could not send them. I corrected them, giving them the info that he had indeed called me the day before and they had tried sending it already this morning. I was assured that the results would be faxed immediately.

Each time I called them, I clearly identified myself, not that its necessary as my accent gives me away every time, and gave them Steven's name too.

Finally, the fax came through. The results looked ok for CBC (not a PCR!) BUT the REALLY big problem is that they sent me test results of someone else!

The name, DOB, test date, type of test, name of doctor and patient number on those results are all of someone else.......

I immediately called them but the office was already closed for the day. Tomorrow is going to be interesting, by the looks of it.

I am not worried about the actual test results - just very concerned about this process of getting a copy of the results - or rather, not getting copies!

Will update
Xx

The PCR Wait

(.......... and, of course, "the weight" - but we won't go into that issue! :-) )

So today I could not wait any longer and I called the doctors office. Steven's PCR results will be back by Friday midday. As a friend says: "We can wait that long!" Yup, just a few more days and we will know just how wonderfully Steven's blood, chromosomes and marrow are doing. How's THAT for absolootle positive thinking?!

I know that I am not alone in this fight against cancer in my child and that it tremendously comforting, especially late at night and when waiting for those results. Yes, Linda, that fear and sadness creeps in. No matter how I lecture myself, it slips through that human crack in my armor. I think the sadness is deeper than the fear - it's a sadness because there IS a fear. More fear than I thought possible. I have been successful in moving forward, not focusing totally on cml and even some days not having that combination of letters in my brain, not in the forefront anyway, not often, but it has definately happened. I think it would be unrealistic to think that this is something that will ever be far from my mind at all and I do think it's important to keep looking for a way to empower me against it - for something to fight it and my fears in a positive way. And maybe by doing this, I will pass on some power and strength to Steven in his fight against this cancer.

If there was something I could wish for - I think I would wish that I could know Steven's thoughts on cml in his life - his deep thoughts. I am sure they also change regularly and that fear does creep into both his and Laura's minds as they do mine. But I wish I knew how he is dealing with this without the 'mama protection' he naturally does. I know that at times I gloss over the heavy stuff to save face, to keep things on an even keel and to save the person I am talking to the anguish my un-edited feelings would no doubt cause. Maybe I don't really want to know his feelings. But I do. I think.

Time for sleep.
As Jerry says: Never give up!

Love and Light
Annie

Letting go those cords of fear.......

Last week I went with Steven for his Oncologist visit. His CBC came back as close to normal as a mama could wish for and blood was taken for the quantitative PCR test. Now the wait has started again.

But this time its different. Steven looks wonderful, he is particularly happy today because he just came back from picking up his new 2003 Nissan 350z. He has the 240z, the 280z and now the 350z - silver, black and this one a beautiful kind of burnt orange. Anyway - he is happy, looks wonderful, is getting on with his life, bloods are great, attitude amazing and its time.......

Time for me to let go those "cords of fear", not let them out of sight by any means, but let them go long enough and well enough to live again. Someone wrote me a simply awesome email and pointed out that worrying about quarterly blood results is simply crazy - we could be dead in the next quarter minute! They said that they would rather be weird (and this was in a good weird way!) than live like I do. I have been living in fear, focusing myself around Steven's cml, actually using that not to do other stuff. A reason, or excuse, if you want, not to function on a level that I know I am capable of.

I thought I was in a good place before, but now I have a real clear purpose. I want to do something positive, I need to strengthen myself for me and then if I need to be strong again one day, I will be better prepared. But mostly this is for me. I want to do 'something' with my photography and writing. Something that will enable me to follow my passion and make a real difference in life too.

Photography has been my passion since a young teen and the writing part just happened over the last long trips we have made. I will put together a book on this last journey we made to Alaska, carrying so many along with us, and at the same time will try to do something every day that will take me closer to what I believe I can be.

This is part of finding the new normal in life. To find the new normal, I have had to realise that it's ok to live again, to let go the hold I have on cml, to want to do something for myself and to want to let go that stress of constant cml focus. It's ok. It's acceptable. It's good. It's going to happen.

10 months - thats all its been. A looong lifetime since Steven's diagnosis. So much has changed in all of us. So many lessons learned, so many strengths and weaknesses discovered and yet, despite, and because of cml, we are all better people. Through the people I have met and the many, many that have supported us through the support boards and emails and in other ways, I have learned that we are indeed really, really fortunate.

When we first heard of Steven's cancer, we had to do something to try to fix it, thats how the Alaska trip happened. Now I have to show him and my girls that its ok to move forward together with cml but to focus on the good things in life, to focus on me again with a really beady eye on Steven and the cml. There is no doubt in my mind that one way or another we all face some type of trauma or hardship or pain in our lives - I can be an example to them and show them that its ok not to drown in it all at the expense of myself and my life.

A couple of weeks ago I read a short sentence that started this wheel turning.... "Cml is almost a chronic disease - take a pill a day - check every three months that everything is ok." Wow. This struck a chord. It tumbled around my brain for a good few days bringing a good feeling along with it, and then Debs called me and I shared it with her. I could literally hear it strike a chord in her too! She "got it" like no one without a child with cml could. Just hearing that she 'got it' made it real for me too - that started that wheel spinning in my mind - starting to open that door that would allow me to look at my life again. And then that email arrived and the doors and windows were all flung open.

I feel lighter. Thanks y'all! :-)

It's been a good past few days here - really good.

Love and Light
Annie
X

Support, Understanding and Accepting

Roots: Even though the ground was washed from under our feet with Steven's diagnosis - we will make new roots, create a 'new normal', even though it might look strange to those on the outside......







I try to follow what other mothers do for/with their kids who have cml. Mostly with those I read about, the 'kids' are younger and are still living at home. This is why the connection with Debbie and I is so wonderful - her daughter Laura and Steven both live elsewhere and are around the same age, close anyway. This is a strange place to be - I cannot quite consider myself as Steven's caregiver and yet I keep tabs on all the results, readings, appointments, go to them with him and generally am the one that watches out for him regarding the cml. Does this make me his caregiver? Does it even matter? "Caregiver" is just a word for someone that is a support of someone that needs it.

I am not sure what I am trying to say, except that at times I get the impression that friends and family definately don't understand my position. I am not angry in any way at all about this - they cannot possibly understand my feelings, fears, relief and joys around cml. I hope they never do because this would mean that they have someone even closer to them fighting a serious disease. But it is difficult to hear things said that are so far from the reality of dealing directly with this cancer.

Steven does look wonderful now and I sincerely hope it stays that way. People see this and wonder why I still worry. I worry because my boy has cancer. Simple as that. It never goes away - it never will. The cancer and the worry. I read the boards and the stories of others with various forms and stages of cancer because it keeps me centered and informed - not to keep my worry alive. I am surrounded by people dying - we all are; it's just clearer to me and I have learned that to run away from this creates an incredible loss of information love and support.

I read about people with cml who have families that just cannot face this disease and therefore don't offer any comfort or support and its heartbreaking. Maybe that's their way of dealing with it, but that leaves the person with cml very lonely. It must be a terrible place to be if your spouse, partner, parents simply won't discuss your illness and you are left to deal with it 'alone'.

Now, I don't want to take away from those with cml or make as if I am going through anything close to what those with cml are going through at all. But. As a 'caregiver' I find it a really lonely place at times when no one around me understands - even though I know that they cannot possibly understand. It's a lonely place when some think that you are over reacting when worry creeps in again, when they think that I talk too much to, or about, those with cancer. It's a lonely place when trying to share the worries, the tests or the results and I see the listeners eyes glaze over and their mind thinking of other things. It a lonely place at times.

This lonely place recedes tremendously when I read other caregivers stories, when I hear how others are dealing with cml, when I feel as if I am not alone. My wobbly moments become less when I read and talk to others that are fighting much harder battles against cancer, when I read about others that Gleevec is not working for, when I read how much harder others are having to battle this disease. My wobbly moments go back into their rightful place and I calm down again.

It's these people on the support boards, that share their stories, that open their lives and give of their time and hearts, try to understand and who are always willing and ready to send a hug - no matter how 'unreasonable' the worry is.... It's these people that I owe my sanity to. They truely understand. They can. Unfortunately for them - fortunately for me.

I try hard not to feel guilty about how much time and space in my mind and heart cancer now fills, I try hard to accept that I am what I am and no one can understand exactly where I am in my personal battle for Steven and against cml - and my sanity in all this. I try hard not to feel upset when someone does not understand that people I have never met, and a few that I have met very briefly, can give me 10 fold, and more, the support they can. I do try hard.

As long as I live, I will worry about Steven and cml to the degree that my heart, head, stomach and the results, of course, dictate. As long as I live I will try to keep updated with the progress of this cancer by talking to people who have cancer, who are caregivers - I will surround myself with them if need be. As long as I live I will surround myself with people that really do and can understand - whether that is in person or on the internet. As long as I live.

Right now I am in a really good space and I realize that this is only because Steven is doing so well. I read the boards regularly, all of them! I stay in contact with many who have cancer, have lost someone to cancer or caregivers of those with cancer. These are the people that are keeping me sane and straight because they know more about me at times than I do!

It's largly due to these people that I have really regained my interest in photography, that I enjoy doing other things now, that cancer does not fill my every waking thought and that I feel that I am getting close to 'sane' again. Not sure that I ever want to be totally sane - that would be a lonely place in a crazy world - LOL :-)

A really big thank you to all of you out there. A really big thank you.
Love and Light
Annie
:-)

Time goes by......

This photograph I took reminds me just how delicate, precious and beautiful life is.......

The time is flying by and I find myself saying that 'tonight I will update the blog' and then tonight goes by again and again and again. But its going past gently and smoothly with a really good feeling in the air.

Steven had his PCR test done again this past Friday, and now the long wait begins. I saw the results on paper that said that his last PCR in October, done qualitatively, came back normal/negative. I saw it, but still have not managed to get a copy out of them! But. That was really good to see that - so now we hope that this next one, which is being done quantitatively, will also come back with a bunch of zero's and then we will see the trend in his tests....... It all looks good though. Really good. The CBC, complete blood count, that Steven has done every month is coming back great too - all the bloods either perfectly lined up or pretty darn close. Now he can push those tests a bit further apart - once every 2 months and a PCR every 3 months. Hopefully another bone marrow biopsy is not on the horizon for a goodly long time - when that happens again either he will be sedated, or I will! Definately. :-)

I worried for a good few weeks before this past appointment that, although both Steven and I like this oncologist, I would have to 'fight with him' to get the PCR done the way we wanted it, fight about whether the last PCR was actually done or not, and ..... something else that I just dont remember right now :-). Well, no fight at all and I realised, yet again, that MY attitude is what counted for so much when asking for something.. Steven is still leaving all the details to me and the doc, just going to the appointments and reporting no side effects and no negatives... He seems comfortable with the doctor and I left the room early, leaving them alone - Mama's got to butt out at some time. All the way to the appointment and back again, all he could chat about was the new car is he in the process of buying - a 2003, 350Z. I have to admit it looks good!

What was really good was to see that Steven is showing interest in, and understanding his results, definately listening to, and taking an active part in his treatment, but a much bigger part of his life - is his life! His cars, his job, Laura, his friends and everything else appears to be of higher importance than this darn cml. It's good. And yes, we are so tremendously fortunate that everything is going so well - I know that everything can change in such a short space of time and I think he is trying to fill up on life and firmly believe that its just going to get better and better.

I have to take the lead from him, and have been able to do that a lot easier in the past few months. Steven looks great and we have a good few people that come into our computer shop to tell us that they are glad he looks so great and to ask about him...... I admire this 'child' so much and it was good to sit behind him in his office the other day and watch him work at high speed with quotes, computer, phone and co-workers...

So life is getting back to 'normal' in many ways. There are definately still the times when my stomach squinches up and my heart rattles but mostly now I can just let it go after acknowledging the feelings.

From the bottom of my heart, the deepest part of my soul and the deepest crevasse of my brain, I hope that Steven is one of those that has a 'smooth ride' with this cancer.

What does one do when you miss someone so much but they are no longer here to talk to? Funny, as I typed that, the answer popped into my brain: "Talk to me, I can hear!" I found a penny in the parking lot today...........

Love and Light and a really big smile

Annie

X

The Most Incredible Year

So finally Steven went for his blood work this past Wednesday and dropped the results off with me today. Every single one of his counts are in the normal range! I know that other tests are more important than this one, and that the leukemic load can be really high and gleevec will still render his blood counts normal. BUT. This is lovely. We know that he is reacting well to everything so only have reason to know that all is well. He looks less pale even with the stresses of Christmas and year end exams and.................. it was just good to see those results all in the right places!
Big Smiles
What a Christmas gift.

I dont think there is a family out there that has not been touched by cancer in one form or another. I thought we were one of those few and fortunate families, but I had put to the back ofmy mind my aunt who passed away from cancer when I was a teenager, a sister in law who passed when I was in my early twenties and my maternal grandmother who died from leukemia many many years before I was born.

This Christmas is the first year that we all have cancer full in our faces. But it will not go down as 'our first Christmas with cancer' but rather the first year that we have seen what is really important and the beginning of a new way of living, despite the fact that cancer is now thoroughly in our lives. We will learn each day to find joy and special times and be thankful for the extra depth and friendships this is adding to our lives. I know that we are all really, really fortunate that it is this type of leukemia and that Steven is not only reacting to the medications so well, but it handling it all apparently very well. I heard the other day that he often forgets he has this disease, and that was about the best thing I could have heard! :-)

It was with a really thankful heart that I wrapped all our Christmas gifts today. I took a moment to think and try to imagine how it could/would have been had the cancer been of a worse strain or Stevens reactions to his meds, non responsive. I thought of all those families that will struggle with the empty place in their homes and hearts this Christmas especially, and I could only be deeply grateful that I could wrap those gifts with a smile and a prayer of thanks.

Of course I thought of the many other people I have met or who I talk to since April this year. Penny's family are so much in my heart and mind as are the other really special people who have helped me through these past nine months. Trish, Debs, Gloria - just to mention a few - thank you! After knowing Penny for such a relatively short time, I dont quite understand how I can miss her the way I do. But I do. So much good came out of such a short space of time of knowing her and that empty space she left is large. Miss ya, girl. I think of you so often.

So as I wrapped the gifts to go under the tree this year, I realized that I had been given so many special gifts in the form of kindness, love, laughs, friendship, understanding and so much more, all year through - so much has been added to my life in such a short space of time.

Instead of it being a 'bad year', 2006 will go down in my memories as the most incredible year yet. The absolutely most incredible year filled with the most wonderful, amazing people.

Steven - you are still my hero!

Love and Light
Annie