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. :-)
Thursday, March 29, 2007
Wednesday, March 28, 2007
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................
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................
Tuesday, March 20, 2007
Tonight's Reality - I am a granny! :-)
Introducing Lisa, my daughter, and McKenzie Rose, her daughter and Brian, proud father...... :-)
Monday, March 19, 2007
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
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
Friday, March 09, 2007
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!
Thursday, March 01, 2007
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
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
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