Steven and Laura................ and Lottie and Steven
Lovely, lovely people
:-)
love and light
Annie
Friday, August 31, 2007
Monday, August 27, 2007
To another mom of cml-er
I recently wrote this letter to a lady who is mom of a cml-er going through a transplant and on re reading it, I thought I would share it here s it puts really clearly many of my feelings, past and present. Much of it is a repeat of what I have said recently and long ago..... but here it is anyway.... minus some of the more personal writings.....
Dear ***
I am SO glad you wrote to me - hearing all you said actually helps me understand some of the feelings I have lurking just below the surface and brings a good measure of reassurance that I am, after all, normal in my feelings - so THANKS :-).
And yes, let me first say how I think that Adrian is very brave to do a blog like that - really open. It cannot be easy to go through everything he is going through, but to put it out there in such a wonderfully honest way. I have already passed his blog to a lady heading towards a transplant and she said it helped her tremendously!
It constantly astounds me just how these not-so-kids are not only dealing with this mean disease, but actually helping others along the way. Don't you just get totally ticked off that it seems to have hit the good ones? You know, I think your road has been tougher than mine, and no - this is no competition, but rather a very difficult road with different stages. I have been so fortunate that Steven has reacted so well to the Gleevec so far, apart from the more recent wobbles. He has been looking great, no hospital stays, no chemo or anything like that. He has missed very few days at work and that was because we hauled him off to Oregon to meet up with Dr Druker last year, and also a specialist in Nashville right in the beginning. So........ his life is almost normal - so little outward disruption. My kid still looks like my kid, paler, more tired, definately older and wiser, and actually better than before diagnosis.
So I have not had to deal with the heartwrenching changes you are seeing in Adrian. In writing this, its almost terrifying - this cancer in him with relatively no outward signs. Scary stuff, whichever way we look at it, hey?
Yes, I find it difficult to enjoy occasions as I did before, but I have to say that it has become easier over time. I say this with the little voice in my mind telling me that as long as he does well............ you know :-) I find myself thinking about the carefree occasions we had bc (before cancer) and find myself counting the events ac (after cancer), and I treasure every little thing, every email from Steven even more than before, and then I remember Davo's words and try so hard to see my son as my son first and then the rest. Have to admit that I fail miserably some of the time :-) Did you read Davo's poem on my blog? That poem helped me SO much - and when I started to seriously think about it and conciously made an effort to ignore the disease when Steven came to visit - the difference was quite astounding. I don't mean ignore totally, because that is simply not possible, but trying to train my brain to see him as the person first and foremost. Not putting the cancer as the primary definer of my child.
Steven started relaxing after seeing me more relaxed, and we even have visits now that cml does not even find its way out of my mouth or to the front of my mind. Until he leaves, then I can analyze what he looked like! I do a mother scan, now mostly unconciously and under his radar - and push it to the back of my mind until I can look at it without him seeing. It has done us good. We had dinner with him and Laura the other night and on the walk home my analysis kicked in - "looks good, pale, a tad tired, no flushed cheeks, took his meds with supper, still got that wonderful sense of humor, talks easily about test results, still has the sparkle in his eye that grows when he looks at Laura. All is good." And I sigh. And I know I will sleep better tonight again.
Yes, you describe it so well, a big gash in our lives. No one else, other than a mom 'gets it' exactly as we do when it comes to our kids, no matter how they try and want to. Someone who is a tremendous support, very caring and with whom I get on very well said to me a while ago that I was over reacting, especially as Steven was doing ok. She said I should let it go, relax and not worry so much, that I should not take it on as mine, not worry and not make my life so wrapped around it, that it was his disease, not mine and, after all, it was all going to be ok, right? Well, at first I was tremendously hurt and angry, then got it that she simply did not "get it". There is no way she can understand, its not a lacking in her, its just not possible. So although family and friends dearly want to help, to understand and be there - they just cannot be there at the same depth as another mom.
When Steven was first diagnosed the most difficult thing, apart from the obvious, was to be near him. I had to cry, rant and rave and could not do it near him. He had just moved out only three weeks before and I was seeing him almost every day, especially after diagnosis. We both cried and held each other up but I wanted to fix it and was devastated that I could not - was horrified that this young man would have this to worry about right at the beginning of his life. It was awful. And no one could sense the depth of my despair. I needed so much time to freak and cry and bawl and am so grateful that he was not here to see that, but also needed to be near him every second. I knew that if he has still lived at home, I would have smothered him.
So Frank picked up that slack - soaking up many many nights of tears and angers. I had to laugh at your soldiering on comment - I am afraid that I failed as a soldier! LOL. I cried so much I nearly drowned! And yes, sometimes being the grown up simply sucks....
I was really really fortunate to meet a lady, Debs, on a support group who has a daughter of similar age with cml. We clicked online and we met her in Alaska in 2006 and then in Seattle again on the same trip. I just flew out there in July this year again to spend some time with her. She literally kept me sane - her and the Asia support group. Do you know about them? They are an absolutely awsome group of people from all around the world - all either with cml or caregivers, mothers and fathers, daughters and sons of those with cml. What a wealth of information and support, help and laughter. There are a good few members from UK and a goodly number of parents with 'kids' with cml. Here is the link, in case you want to visit or join there.. http://asia.groups.yahoo.com/group/AsianCMLSupportGroup/messages .
Steven has a pcr test done every three months and I can feel the pressure and tension building when the time gets closer. I check and recheck the dates, I make sure I have the paper close by to call and order the test kit, then I count down the days so that I dont mess up... then the test, then the 3 week wait for the results. Each three week period brings on 3000 more gray hairs, my blood pressure goes up and the wrinkles arrive in droves! These are the true wrinkles, not 'character lines'. LOL. It's not ok - he is doing great, but this monster can change on him at any time. And I don't want that. Not for him, not for me, not for anyone. So I become restless, irritable, withdrawn and then the results come in and I either cry with relief or breath deeply, sigh and know that life for the next 6 weeks will be better - until the time comes to re-order the test kit. Around and around the mulberry bush, the mulberry bush........... etc etc. Did you know that song?
I know that as Steven levelled out, responded, looked better and dealt with everything so well - I got better. Occasions became easier, I started sleeping through the nights, my heart beat more evenly and life got its smile back again. I really, really wish this for you in the near future. Obviously for all of you - but, as mom, especially for you because that will mean that everything is truely ok again.
I sometimes feel guilty when talking about my feelings, and spending so much time on how I feel, and I definately don't intend to exclude anyone or any of your family and friends in my good wishes and hopes, but I only clearly feel my feelings and can imagine how you feel, not any of the others and definately no one with cml.
---------------------------------------------
Go to http://baldyblog.freshblogs.co.uk/ to see the video blog of this young man and read his story - it's incredibly open, honest, heartrending and full of life.
Love and Light
Annie
Dear ***
I am SO glad you wrote to me - hearing all you said actually helps me understand some of the feelings I have lurking just below the surface and brings a good measure of reassurance that I am, after all, normal in my feelings - so THANKS :-).
And yes, let me first say how I think that Adrian is very brave to do a blog like that - really open. It cannot be easy to go through everything he is going through, but to put it out there in such a wonderfully honest way. I have already passed his blog to a lady heading towards a transplant and she said it helped her tremendously!
It constantly astounds me just how these not-so-kids are not only dealing with this mean disease, but actually helping others along the way. Don't you just get totally ticked off that it seems to have hit the good ones? You know, I think your road has been tougher than mine, and no - this is no competition, but rather a very difficult road with different stages. I have been so fortunate that Steven has reacted so well to the Gleevec so far, apart from the more recent wobbles. He has been looking great, no hospital stays, no chemo or anything like that. He has missed very few days at work and that was because we hauled him off to Oregon to meet up with Dr Druker last year, and also a specialist in Nashville right in the beginning. So........ his life is almost normal - so little outward disruption. My kid still looks like my kid, paler, more tired, definately older and wiser, and actually better than before diagnosis.
So I have not had to deal with the heartwrenching changes you are seeing in Adrian. In writing this, its almost terrifying - this cancer in him with relatively no outward signs. Scary stuff, whichever way we look at it, hey?
Yes, I find it difficult to enjoy occasions as I did before, but I have to say that it has become easier over time. I say this with the little voice in my mind telling me that as long as he does well............ you know :-) I find myself thinking about the carefree occasions we had bc (before cancer) and find myself counting the events ac (after cancer), and I treasure every little thing, every email from Steven even more than before, and then I remember Davo's words and try so hard to see my son as my son first and then the rest. Have to admit that I fail miserably some of the time :-) Did you read Davo's poem on my blog? That poem helped me SO much - and when I started to seriously think about it and conciously made an effort to ignore the disease when Steven came to visit - the difference was quite astounding. I don't mean ignore totally, because that is simply not possible, but trying to train my brain to see him as the person first and foremost. Not putting the cancer as the primary definer of my child.
Steven started relaxing after seeing me more relaxed, and we even have visits now that cml does not even find its way out of my mouth or to the front of my mind. Until he leaves, then I can analyze what he looked like! I do a mother scan, now mostly unconciously and under his radar - and push it to the back of my mind until I can look at it without him seeing. It has done us good. We had dinner with him and Laura the other night and on the walk home my analysis kicked in - "looks good, pale, a tad tired, no flushed cheeks, took his meds with supper, still got that wonderful sense of humor, talks easily about test results, still has the sparkle in his eye that grows when he looks at Laura. All is good." And I sigh. And I know I will sleep better tonight again.
Yes, you describe it so well, a big gash in our lives. No one else, other than a mom 'gets it' exactly as we do when it comes to our kids, no matter how they try and want to. Someone who is a tremendous support, very caring and with whom I get on very well said to me a while ago that I was over reacting, especially as Steven was doing ok. She said I should let it go, relax and not worry so much, that I should not take it on as mine, not worry and not make my life so wrapped around it, that it was his disease, not mine and, after all, it was all going to be ok, right? Well, at first I was tremendously hurt and angry, then got it that she simply did not "get it". There is no way she can understand, its not a lacking in her, its just not possible. So although family and friends dearly want to help, to understand and be there - they just cannot be there at the same depth as another mom.
When Steven was first diagnosed the most difficult thing, apart from the obvious, was to be near him. I had to cry, rant and rave and could not do it near him. He had just moved out only three weeks before and I was seeing him almost every day, especially after diagnosis. We both cried and held each other up but I wanted to fix it and was devastated that I could not - was horrified that this young man would have this to worry about right at the beginning of his life. It was awful. And no one could sense the depth of my despair. I needed so much time to freak and cry and bawl and am so grateful that he was not here to see that, but also needed to be near him every second. I knew that if he has still lived at home, I would have smothered him.
So Frank picked up that slack - soaking up many many nights of tears and angers. I had to laugh at your soldiering on comment - I am afraid that I failed as a soldier! LOL. I cried so much I nearly drowned! And yes, sometimes being the grown up simply sucks....
I was really really fortunate to meet a lady, Debs, on a support group who has a daughter of similar age with cml. We clicked online and we met her in Alaska in 2006 and then in Seattle again on the same trip. I just flew out there in July this year again to spend some time with her. She literally kept me sane - her and the Asia support group. Do you know about them? They are an absolutely awsome group of people from all around the world - all either with cml or caregivers, mothers and fathers, daughters and sons of those with cml. What a wealth of information and support, help and laughter. There are a good few members from UK and a goodly number of parents with 'kids' with cml. Here is the link, in case you want to visit or join there.. http://asia.groups.yahoo.com/group/AsianCMLSupportGroup/messages .
Steven has a pcr test done every three months and I can feel the pressure and tension building when the time gets closer. I check and recheck the dates, I make sure I have the paper close by to call and order the test kit, then I count down the days so that I dont mess up... then the test, then the 3 week wait for the results. Each three week period brings on 3000 more gray hairs, my blood pressure goes up and the wrinkles arrive in droves! These are the true wrinkles, not 'character lines'. LOL. It's not ok - he is doing great, but this monster can change on him at any time. And I don't want that. Not for him, not for me, not for anyone. So I become restless, irritable, withdrawn and then the results come in and I either cry with relief or breath deeply, sigh and know that life for the next 6 weeks will be better - until the time comes to re-order the test kit. Around and around the mulberry bush, the mulberry bush........... etc etc. Did you know that song?
I know that as Steven levelled out, responded, looked better and dealt with everything so well - I got better. Occasions became easier, I started sleeping through the nights, my heart beat more evenly and life got its smile back again. I really, really wish this for you in the near future. Obviously for all of you - but, as mom, especially for you because that will mean that everything is truely ok again.
I sometimes feel guilty when talking about my feelings, and spending so much time on how I feel, and I definately don't intend to exclude anyone or any of your family and friends in my good wishes and hopes, but I only clearly feel my feelings and can imagine how you feel, not any of the others and definately no one with cml.
---------------------------------------------
Go to http://baldyblog.freshblogs.co.uk/ to see the video blog of this young man and read his story - it's incredibly open, honest, heartrending and full of life.
Love and Light
Annie
Our Momly Job.......
I spent a few days feeling bruised from the wait, but now the days definately feel and look lighter and brighter - despite this awful heat we have going on around here. It seems to be never-ending - and I do know that it wont be long before I am moaning and groaning about the cold winter we are no doubt headed into...... :-) Such is life and may the heat and cold be our main worry!
As a child I had a little light weight wooden bat that was attached to a little ball by a thin elastic band and I would 'play tennis' with this, sometimes hitting the ball but many times missing it, causing that ball to fly way beyond the hitting (normal) point of return over my shoulder somewhere. Sometimes life feels like being this little ball - totally at the mercy of something bigger holding that bat, and at times totally out of control, like an insane little bouncing ball.
But for now I am just so enjoying the peace. Since I read Davo's poem about seeing the person first and only later the disease, I get great pleasure in realising, after a visit from Steven, that cml did not make an appearance in the front part of my brain at all! Twice in this past week, he has popped in for just a minute and only after he left did I think that - geez, he looked so good! and how wonderful it is to see my son for the person he is and not the disease he has. I know that I will probably not be able to maintain this always and that right now is 'the honeymoon' period again - right after a good pcr result. But boy, am I enjoying it! I know Frank is too - having a much more relaxed Annie around the house for a change.
As another cml-er mom said to me - "to worry is our momly job" - and yup - we do it well! :-) But for now that worry has receded to the rear part of my brain, giving us all time to build our strength for the next waiting time.
I wanted to say how much the comments on and re this blog mean to me. I have 'met' a good few mothers, cml-ers and others through this blog, who help me through the maze of feelings and emotions and life with cml in it, by either sharing their stories, holding my hand, encouraging me and/or simply letting me know that I am not alone. I would not be where I am on my 'peace scale' without all of you........... so a really big Thank You!
Love and Light
Annie
As a child I had a little light weight wooden bat that was attached to a little ball by a thin elastic band and I would 'play tennis' with this, sometimes hitting the ball but many times missing it, causing that ball to fly way beyond the hitting (normal) point of return over my shoulder somewhere. Sometimes life feels like being this little ball - totally at the mercy of something bigger holding that bat, and at times totally out of control, like an insane little bouncing ball.
But for now I am just so enjoying the peace. Since I read Davo's poem about seeing the person first and only later the disease, I get great pleasure in realising, after a visit from Steven, that cml did not make an appearance in the front part of my brain at all! Twice in this past week, he has popped in for just a minute and only after he left did I think that - geez, he looked so good! and how wonderful it is to see my son for the person he is and not the disease he has. I know that I will probably not be able to maintain this always and that right now is 'the honeymoon' period again - right after a good pcr result. But boy, am I enjoying it! I know Frank is too - having a much more relaxed Annie around the house for a change.
As another cml-er mom said to me - "to worry is our momly job" - and yup - we do it well! :-) But for now that worry has receded to the rear part of my brain, giving us all time to build our strength for the next waiting time.
I wanted to say how much the comments on and re this blog mean to me. I have 'met' a good few mothers, cml-ers and others through this blog, who help me through the maze of feelings and emotions and life with cml in it, by either sharing their stories, holding my hand, encouraging me and/or simply letting me know that I am not alone. I would not be where I am on my 'peace scale' without all of you........... so a really big Thank You!
Love and Light
Annie
Sunday, August 19, 2007
For Adams mom........
Today a friend of mine called from California - her nephew Adam passed away from cancer - AML. This incredible young man was 25 years old - he was too young to die! I did not know him at all - just what Lisa has told me, but I found myself dripping tears onto the kitchen counter as she told me. She had told me of camping trips, his way with kids, his smile and his talent. A wonderful, special, nice kid. And now he is gone. Way too soon.
Steven is 24. I don't like to hear this happening to people this age group. I don't like this happening to anyone at all - but this age? Its cruel. Lisa told me of his last days here, the anguish of his mom, his family and his pain and suffering. We are all told of how they are in a better place, how they are not suffering anymore etc etc. That's one thing, the anguish, pain and unfairness of it all still has to be dealt with by those left behind. A new life - never as complete as before.
To Adam's mom - when I see my son, I will remember Adam too. I will remember Adam as Lisa described him - laughing, deep, caring, smiling, artistic and a very special person. I am so sorry for your loss.
love and light
Annie
Steven is 24. I don't like to hear this happening to people this age group. I don't like this happening to anyone at all - but this age? Its cruel. Lisa told me of his last days here, the anguish of his mom, his family and his pain and suffering. We are all told of how they are in a better place, how they are not suffering anymore etc etc. That's one thing, the anguish, pain and unfairness of it all still has to be dealt with by those left behind. A new life - never as complete as before.
To Adam's mom - when I see my son, I will remember Adam too. I will remember Adam as Lisa described him - laughing, deep, caring, smiling, artistic and a very special person. I am so sorry for your loss.
love and light
Annie
Tuesday, August 14, 2007
Breathing again!
Ok - so we just got the results in......... Steven is headed in the right direction again. His PCR readings just a tad lower than the last test, but lower nevertheless. Here they are:
4th June Mid July
PCR = 0.17 PCR = 0.10
Log Reduction: 1.4 Log reduction: 1.6
The log reduction is a log drop from the baseline at OHSU and the higher the number, the better. We are still hopeful that he will get the the cherished 3-log reduction in the not too distant future.
My reaction to the results was quite scary. I had not realised just how tense and scared I was waiting for this result to come back. The wait went on forever because it was in essence a double dooby wait - from June - then the shock of the rise of pcr and the wait till we could redo the pcr and then this wait that simply went on beyond sanity for me this time.
So now, months and months of tension have drained out of me and even though I hear the next test knocking at the door - not today. Today I am going to smile and enjoy these results to the fullest! I literally feel as if the world has lifted off my shoulders.
Today is good - no matter what. Today is good.
love and light
Annie
4th June Mid July
PCR = 0.17 PCR = 0.10
Log Reduction: 1.4 Log reduction: 1.6
The log reduction is a log drop from the baseline at OHSU and the higher the number, the better. We are still hopeful that he will get the the cherished 3-log reduction in the not too distant future.
My reaction to the results was quite scary. I had not realised just how tense and scared I was waiting for this result to come back. The wait went on forever because it was in essence a double dooby wait - from June - then the shock of the rise of pcr and the wait till we could redo the pcr and then this wait that simply went on beyond sanity for me this time.
So now, months and months of tension have drained out of me and even though I hear the next test knocking at the door - not today. Today I am going to smile and enjoy these results to the fullest! I literally feel as if the world has lifted off my shoulders.
Today is good - no matter what. Today is good.
love and light
Annie
Tuesday, August 07, 2007
Rocks and jello......
I check the calendar almost daily - how many weeks has it been since Steven's blood was drawn for this PCR?
25 weeks??
Feels like it.
Its only been 2 weeks.
Only.
One side of my brain says its simply got to be ok, the reading is going to be lower, the results will be in the right direction. It will. The other side says.............. nope - I am not even going to verbalize it. Those words and feelings bounce around my head and they can stay there. For now. I find it quite amazing just how much my thoughts and emotions bounce around during this wait - almost extreme to extreme. It really messes with my peace of mind and general ability to get through the days. Everything is smooth on the surface but not quite like that underneath - kinda like rocks and jello.
I know that whatever happens we will all have to deal with it - it going to be ok in the long run, but I SO don't want things to change for Steven! And selfishly, so selfishly, I don't want the worry, I don't want the changes for all of us. How selfish is that?? .......aaaaaaah. What will be will be.
So I finished Harry Potter and could NOT believe that "he who cannot be named" actually ..............nope - not going to write that either. It was good - go read it :-)
This PCR is kinda important and the wait this time is terribly long. Terribly long. My cell phone is glued to my side for when Dr J is going to call me. Occasionally I check that its still working. It is.
One day closer
love and light
Annie
25 weeks??
Feels like it.
Its only been 2 weeks.
Only.
One side of my brain says its simply got to be ok, the reading is going to be lower, the results will be in the right direction. It will. The other side says.............. nope - I am not even going to verbalize it. Those words and feelings bounce around my head and they can stay there. For now. I find it quite amazing just how much my thoughts and emotions bounce around during this wait - almost extreme to extreme. It really messes with my peace of mind and general ability to get through the days. Everything is smooth on the surface but not quite like that underneath - kinda like rocks and jello.
I know that whatever happens we will all have to deal with it - it going to be ok in the long run, but I SO don't want things to change for Steven! And selfishly, so selfishly, I don't want the worry, I don't want the changes for all of us. How selfish is that?? .......aaaaaaah. What will be will be.
So I finished Harry Potter and could NOT believe that "he who cannot be named" actually ..............nope - not going to write that either. It was good - go read it :-)
This PCR is kinda important and the wait this time is terribly long. Terribly long. My cell phone is glued to my side for when Dr J is going to call me. Occasionally I check that its still working. It is.
One day closer
love and light
Annie
Saturday, August 04, 2007
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