Long time since an update on Steven.... he has been going for his regular blood tests and all seems well apart from a low count here or there, says he. Both him and Laura are working very long hours right now and Steven has just signed in to start college for night classes lasting 2 years. He will be studying CAD - Computer Aided Drafting/Drawing.
He is not sitting still at all and we are so very proud of everything he is doing and the fact that they are moving forward in their lives and not getting stuck with all this going on.
Both he and Laura will be flying out to Portland early September to meet with Dr Druker on the 7th September. We will meet him there and hopefully get them to the coast for a few days before they fly back again on the weekend. Steven does not want to miss his first long lecture of college so it looks as if the tentative plans we had for Corporate Angel Network to fly them out won't work, but thats life and we are now looking for flights out to Portland on a 'regular jet'.
I will update both this site and the other after the visit with Dr Druker - we are really looking forward to meeting him! And I am looking forward to seeing some results with my own eyes, its almost like a craving - I need to see those blood numbers again.........
So, all appears well for right now - lets hope it keeps on in a positive vein foreverrrrrrrrrrr
Love and light
Annie
Monday, August 28, 2006
Saturday, August 12, 2006
August Thoughts..............
There are a few things that have touched me very deeply on this trip and I have found it difficult to put those feelings into words that make sense or even convey what I feel and have felt.
Cancer has touched me (obviously Frank too) through Steven, deeply. When I first started researching and trying to find some way of dealing with having cancer as a direct part of our lives, I met some really incredible people. Penny is one of those really special people. I have been so incredibly fortunate to have this lady in my life, even though it is for such a short and difficult time.
When we met her in Edmonton at the beginning of this journey, I felt so comfortable with her. She was going though some really bad pain and her quality of life is not the way she wanted it to be at this stage at all. It was so difficult to watch this lady dealing with all of this. It broke my heart and at the same time, gave me so much strength.
And then she showed me a knob of cancer that sits right below her left rib cage. With her permission I touched it gently. I touched cancer. Cancer has touched us and changed absolutely everything, our whole world is different - yet when I touched it, nothing changes! It was shattering to me to touch that bump, to see the look in Penny's eyes. It made it all so absolutely real and unavoidable. Her eyes told the story. My heart, stomach and soul clenched at that touch and I could not begin to imagine dealing with that every day. I had to tell myself just to breath. I don't know whether holding it together was good, or should I just have let it all come out and cry right there? I did not cry then. I cried when we left Penny's house, I cried when we left Edmonton the next day and I cry now. But it was too deep to cry then.
I think of this every day and I know that Penny is trying to control her pain and be able to live the very best she can for as long as she can. I don't know how. I read the cancer support boards whenever I can get online, I hear that others have lost the battle with this disease and I know that Penny won't be with us for too much longer. It breaks my heart and at times I feel like I am drowning. There are times when I am sorry that we have the RV done up like this - cancer is in my face all the time! But it's in our lives. It's never going to leave. Never. So I had better find a way to make those days better and be extremely grateful for what we have and deal with the pain. I am tremendously grateful for the people I have met so far, for the laughs, the sharing and for the learning - even when that hurts so much.
Writing this makes me feel selfish in a way, but I find it difficult to deal with it too - and I think this is an important side of this disease - no matter what version it is - there is always someone 'on the outside' learning a new normal. There are many days when I can handle all this very well and then there are days when I want to crawl in a corner and go back in time - till when? To a time when there was no cancer? So much learning and growing has happened since March 6th. Lifetimes have passed and I am no longer the person I was before then. One cannot go back.
Steven deals with the leukemia in what appears to be a very strong way. He does not seem to let it get him down, and he has become much more outgoing since diagnosed. I hope he realizes now, at his relatively young age, that life has to be grabbed and lived to the fullest - there is no time to waste at all. He has to learn to be strong enough to share his 'scared' and worries with someone - its too heavy to carry alone. Those bad days come, even in the good times. It is impossible to ignore the fact that he has leukemia, yet it does not seem appropriate to ask him about it all the time. And then I don't want him to feel that I am not interested in how he is doing or coping or not. It's a very fine line to walk and one that gets played by ear day by day. He is very patient and understanding and open with me when I do go down that road.
When we were visiting Penny, I had a million questions and she was also fantastic in answering them. I think it is natural to 'pull away' from other people when we are not feeling well, and I had noticed this in her. I was hoping that she knew that I still cared about her and missed our earlier days of being able to joke more and be a lot more lighthearted. Was it just me that lost the lightheartedness during the last few weeks as her pain got worse? Did I get too serious? Was this something I should have tried harder to maintain or was it ok to lose the light side in our talks and emails? I already miss that lady so much!
The names on the RV mean so much to me. Most people shared a bit of their life and trials with me and every day I do the walkabout, sending them happy vibes, good results and happiness. It's like being entrusted with a little piece of each of them. Maybe I am reading too much into this all, but that is the way it is. When we saw the aurora the other night - I stood there in wonder of this display of nature and thought of all of those battling any type of cancer and wished I could share this wonder with them all.
We carry my son's name, my grandmother's name and my sister-in-law's name on the side of the RV along with all the others. We have children's names, mothers, fathers, grandfathers, grandmothers, friends, sisters and brothers, as well as those that have lost the battle, on our sides as we drive these roads and see these wonders. How could it not be an emotional experience to see these names daily? So much hope is in each name, so many stories, so many days and nights with tears and worry and so much joy and strength and hope too.
There are days when it seems strange that life goes on relatively normally despite so many people dealing with this disease. But there are more days that it is starting to feel abnormal not to meet up with cancer in some or other form. The new normal. Maybe one day it will fit like a comfy glove and I will also get that look of peace that we saw on a lady at Vanderbilt Hospital who was fighting her third bout of cancer. She was amazing!
Why does it seem like all the nice people get cancer? Do people become nice after diagnosis? Or did I lose sight of just how many nice people there are in the world? My life has become so rich since Steven was diagnosed. I have made firm friends with people that we have not even met yet - people that truly care about us all, despite the fact that they are also learning to live with this illness in their family. Debbie and I have really helped each other along and there have been many days when I know that no one else could understand what I was going through (her 19 yr old daughter has CML) - a quick email to her and I could breathe again, knowing that I was, after all, normal in feeling the way I was. I know there are many others out there that are going through what I am and I feel very fortunate to have clicked with a few of them that are simply wonderful!
Just the other day while stopped at a gas station, one guy asked me about the RV all wrapped. When I told him that my son, Steven, has leukemia, it hit me all over again. I could not say any more. It turned my gut and twisted my soul all over again. God, it hurt! A few minutes passed and that feeling faded back and I could think again. This does not happen every time at all - just when I least expect it! Does that ever stop? And that's me - what about for Steven? Maybe I should take up Lamaze breathing exercises……….
Ok - that's my guts spilled for a while. Funny how writing it down spreads the load and un-clouds some of the issues.
Love and Light
Annie
xxxxxx
www.RoadrunnersUSA.com
www.livingwithcml.blogspot.com
www.PenniesforCancer.com
Cancer has touched me (obviously Frank too) through Steven, deeply. When I first started researching and trying to find some way of dealing with having cancer as a direct part of our lives, I met some really incredible people. Penny is one of those really special people. I have been so incredibly fortunate to have this lady in my life, even though it is for such a short and difficult time.
When we met her in Edmonton at the beginning of this journey, I felt so comfortable with her. She was going though some really bad pain and her quality of life is not the way she wanted it to be at this stage at all. It was so difficult to watch this lady dealing with all of this. It broke my heart and at the same time, gave me so much strength.
And then she showed me a knob of cancer that sits right below her left rib cage. With her permission I touched it gently. I touched cancer. Cancer has touched us and changed absolutely everything, our whole world is different - yet when I touched it, nothing changes! It was shattering to me to touch that bump, to see the look in Penny's eyes. It made it all so absolutely real and unavoidable. Her eyes told the story. My heart, stomach and soul clenched at that touch and I could not begin to imagine dealing with that every day. I had to tell myself just to breath. I don't know whether holding it together was good, or should I just have let it all come out and cry right there? I did not cry then. I cried when we left Penny's house, I cried when we left Edmonton the next day and I cry now. But it was too deep to cry then.
I think of this every day and I know that Penny is trying to control her pain and be able to live the very best she can for as long as she can. I don't know how. I read the cancer support boards whenever I can get online, I hear that others have lost the battle with this disease and I know that Penny won't be with us for too much longer. It breaks my heart and at times I feel like I am drowning. There are times when I am sorry that we have the RV done up like this - cancer is in my face all the time! But it's in our lives. It's never going to leave. Never. So I had better find a way to make those days better and be extremely grateful for what we have and deal with the pain. I am tremendously grateful for the people I have met so far, for the laughs, the sharing and for the learning - even when that hurts so much.
Writing this makes me feel selfish in a way, but I find it difficult to deal with it too - and I think this is an important side of this disease - no matter what version it is - there is always someone 'on the outside' learning a new normal. There are many days when I can handle all this very well and then there are days when I want to crawl in a corner and go back in time - till when? To a time when there was no cancer? So much learning and growing has happened since March 6th. Lifetimes have passed and I am no longer the person I was before then. One cannot go back.
Steven deals with the leukemia in what appears to be a very strong way. He does not seem to let it get him down, and he has become much more outgoing since diagnosed. I hope he realizes now, at his relatively young age, that life has to be grabbed and lived to the fullest - there is no time to waste at all. He has to learn to be strong enough to share his 'scared' and worries with someone - its too heavy to carry alone. Those bad days come, even in the good times. It is impossible to ignore the fact that he has leukemia, yet it does not seem appropriate to ask him about it all the time. And then I don't want him to feel that I am not interested in how he is doing or coping or not. It's a very fine line to walk and one that gets played by ear day by day. He is very patient and understanding and open with me when I do go down that road.
When we were visiting Penny, I had a million questions and she was also fantastic in answering them. I think it is natural to 'pull away' from other people when we are not feeling well, and I had noticed this in her. I was hoping that she knew that I still cared about her and missed our earlier days of being able to joke more and be a lot more lighthearted. Was it just me that lost the lightheartedness during the last few weeks as her pain got worse? Did I get too serious? Was this something I should have tried harder to maintain or was it ok to lose the light side in our talks and emails? I already miss that lady so much!
The names on the RV mean so much to me. Most people shared a bit of their life and trials with me and every day I do the walkabout, sending them happy vibes, good results and happiness. It's like being entrusted with a little piece of each of them. Maybe I am reading too much into this all, but that is the way it is. When we saw the aurora the other night - I stood there in wonder of this display of nature and thought of all of those battling any type of cancer and wished I could share this wonder with them all.
We carry my son's name, my grandmother's name and my sister-in-law's name on the side of the RV along with all the others. We have children's names, mothers, fathers, grandfathers, grandmothers, friends, sisters and brothers, as well as those that have lost the battle, on our sides as we drive these roads and see these wonders. How could it not be an emotional experience to see these names daily? So much hope is in each name, so many stories, so many days and nights with tears and worry and so much joy and strength and hope too.
There are days when it seems strange that life goes on relatively normally despite so many people dealing with this disease. But there are more days that it is starting to feel abnormal not to meet up with cancer in some or other form. The new normal. Maybe one day it will fit like a comfy glove and I will also get that look of peace that we saw on a lady at Vanderbilt Hospital who was fighting her third bout of cancer. She was amazing!
Why does it seem like all the nice people get cancer? Do people become nice after diagnosis? Or did I lose sight of just how many nice people there are in the world? My life has become so rich since Steven was diagnosed. I have made firm friends with people that we have not even met yet - people that truly care about us all, despite the fact that they are also learning to live with this illness in their family. Debbie and I have really helped each other along and there have been many days when I know that no one else could understand what I was going through (her 19 yr old daughter has CML) - a quick email to her and I could breathe again, knowing that I was, after all, normal in feeling the way I was. I know there are many others out there that are going through what I am and I feel very fortunate to have clicked with a few of them that are simply wonderful!
Just the other day while stopped at a gas station, one guy asked me about the RV all wrapped. When I told him that my son, Steven, has leukemia, it hit me all over again. I could not say any more. It turned my gut and twisted my soul all over again. God, it hurt! A few minutes passed and that feeling faded back and I could think again. This does not happen every time at all - just when I least expect it! Does that ever stop? And that's me - what about for Steven? Maybe I should take up Lamaze breathing exercises……….
Ok - that's my guts spilled for a while. Funny how writing it down spreads the load and un-clouds some of the issues.
Love and Light
Annie
xxxxxx
www.RoadrunnersUSA.com
www.livingwithcml.blogspot.com
www.PenniesforCancer.com
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