Alexis, thank you for the update! I'm so thrilled that Alex is going to your wedding (which I'm sure will be beautiful!), and I'm over the moon that Alex will be in the trial!!! YAY!!!!!!! That's fabulous news!
Alex, I think of you daily and have toyed with a trip to London to see you. It's a crazy time with my 2.5 month old and going back to work soon - but, I love you and I'd love to see you in person and give you a huge hug....we'll see. At this point, I think realistically I'll have to wait a bit for my babe to age....
But, we are with you all the time, and we hope you feel our love. Big kisses from Laurel (or more like slobber that you need to pretend is a kiss) and much love,
-Julie
Friday, April 30, 2010
Sunday, April 25, 2010
Best Wishes!!
Here's wishing you all a great wedding and reunion, and lots and lots of warm wishes from Philadelphia. I'll be thinking of you all and wishing I was there to join in!! Thanks so much for the update. Hugs and xxxx
Saturday, April 24, 2010
can i post on Danda's behalf?
Dear troops,
In last speaking with Danda she told me that she had been feeling overwhelmed as a result of her back pain and the radiation as well as trying to meet with doctors and get into the clinical trial. Understandable to say the least. So I thought since I had spoken with her I would take the chance to play secretary for a day until she found some time to write something on the blog. I may be taking a leap of faith that she will understand my jumping in, but I have been wanting to share the good news and perhaps publishing it would mean it was real.
So not to steal her thunder, but rather share in it, she called to tell me that she and the Priorelli/Murdoch clan had booked tickets to the islands. YIPEEEEEE! She told me that no cancer, volcano or any other hurdle was going to keep her from coming. This was HER time! She had her sights set on this day and nothing was going to keep her from the vacation she so deserved. I am over the moon about the news and cannot wait to see my cousin and her entire family. This is the best wedding gift I can imagine. Having her present will be so joyous!
On top of it she got into a clinical trial, but told them she could not start until after the 14th and they obliged. More good news!
She was still experiencing back pain and was told it would not subside until early next week after the radiation had a chance to do its thing. She was give morphine pills to help with the pain so I pray that has been working, but may be leading to her taking some down time.
Well, there are the basics that I think will help everyone feel in touch. Danda, I was just bursting and wanted to share my happiness I hope it is all still true and I have not reported anything wrongly, but perhaps this posting will lessen the anxiety to fill everyone in on the latest news and provide you with a little more down time until are able get back on the blog. Today marks the five day count down until you will be on a plane to the islands and their warm waters!
Much Love,
Lex
In last speaking with Danda she told me that she had been feeling overwhelmed as a result of her back pain and the radiation as well as trying to meet with doctors and get into the clinical trial. Understandable to say the least. So I thought since I had spoken with her I would take the chance to play secretary for a day until she found some time to write something on the blog. I may be taking a leap of faith that she will understand my jumping in, but I have been wanting to share the good news and perhaps publishing it would mean it was real.
So not to steal her thunder, but rather share in it, she called to tell me that she and the Priorelli/Murdoch clan had booked tickets to the islands. YIPEEEEEE! She told me that no cancer, volcano or any other hurdle was going to keep her from coming. This was HER time! She had her sights set on this day and nothing was going to keep her from the vacation she so deserved. I am over the moon about the news and cannot wait to see my cousin and her entire family. This is the best wedding gift I can imagine. Having her present will be so joyous!
On top of it she got into a clinical trial, but told them she could not start until after the 14th and they obliged. More good news!
She was still experiencing back pain and was told it would not subside until early next week after the radiation had a chance to do its thing. She was give morphine pills to help with the pain so I pray that has been working, but may be leading to her taking some down time.
Well, there are the basics that I think will help everyone feel in touch. Danda, I was just bursting and wanted to share my happiness I hope it is all still true and I have not reported anything wrongly, but perhaps this posting will lessen the anxiety to fill everyone in on the latest news and provide you with a little more down time until are able get back on the blog. Today marks the five day count down until you will be on a plane to the islands and their warm waters!
Much Love,
Lex
Friday, April 23, 2010
Hi Panda,
The blog has been quiet lately... and so have I, letting work and a flu get the better of me for a few days. I've been checking the blog regularly though, and every time I saw Alexis' title to her latest post Cocoons spawn butterflies I imagined you spring up from under your blankets, with grace and a light step, no pain or trouble, a smile on your face and your arms extended towards James asking, "So, what do we do today?". Like a butterfly. (I keep up the visualization exercises).
I hope that by now pains and the need for cocooning are gone, or at least are less intense. How did the adventure of the clinical trial go in the end? I hope you made it in, but I also hope the schedule is such that you can go to S. Thomas for the wedding.
Here not much is new. Spring has finally arrived and the valley has become green and beautiful. A couple of weeks ago I saw the cherry trees in bloom, but the apple trees were only tentatively budding. By now they are probably full of leaves and flowers. As you can understand by my disinformation on the status of plants and flowers around here I've not been biking as much this season... yet. It will happen, I've just had a slow start :)
A big hug.
The blog has been quiet lately... and so have I, letting work and a flu get the better of me for a few days. I've been checking the blog regularly though, and every time I saw Alexis' title to her latest post Cocoons spawn butterflies I imagined you spring up from under your blankets, with grace and a light step, no pain or trouble, a smile on your face and your arms extended towards James asking, "So, what do we do today?". Like a butterfly. (I keep up the visualization exercises).
I hope that by now pains and the need for cocooning are gone, or at least are less intense. How did the adventure of the clinical trial go in the end? I hope you made it in, but I also hope the schedule is such that you can go to S. Thomas for the wedding.
Here not much is new. Spring has finally arrived and the valley has become green and beautiful. A couple of weeks ago I saw the cherry trees in bloom, but the apple trees were only tentatively budding. By now they are probably full of leaves and flowers. As you can understand by my disinformation on the status of plants and flowers around here I've not been biking as much this season... yet. It will happen, I've just had a slow start :)
A big hug.
Thursday, April 15, 2010
cocoons spawn butterflies!
You are a trooper! I am without words of wisdom because this is a journey that is truly your own. You are fighting this thing as best you can and it seems there are still so many unexpected hurdles. If you can stay strong and think positive thoughts you will triumph if only because you never let it get the best of you. When one is in pain it is nearly impossible to do so, but perhaps deep down you can find some strength to endure. I surely hope that by now you have managed to get your hands on some heavier pain meds. Is this a side effect of the last chemo cycle still? In the modern days of medicine there is no excuse for pain so I dearly hope you have been taken to hospital to demand something more.
As for the clinical trial I pray that you get in as it will be another piece of artillery against the cancer. Of course, you being you, are worried about missing my wedding. That shows you have not lost your inner self in all of this! You know the drill-you’ve been down that aisle before so to speak! Your wanting to be there is as good for me as you being there. But there are also the islands that you wanted to get to. They are pinned to the ocean floor so they are not going anywhere! You will come when the time is right. It takes merely a plane ticket, straw hat and bathing suit to make it happen.
YOU are all of our priorities and getting you well is of the highest! I am rooting for you in California. I think of you daily and wish I could be there to hold you and stroke your forehead. Think of all of us surrounding you and caring for you in those painful moments because perhaps that will ease the pain if just a little.
Danda, I love you and am glad to hear that your love for James and clearly is love for you make you smile. You deserve all the smiles he gives you. Hugs to you, Julian and James-I pray I see you all soon to give you a warm embrace.
I recently went to Palm Springs with some girlfriends for the weekend and what a hoot of a place. Stuck in the 50’s! Something about that warm desert air really appealed to me. Ironically I arrived back Monday and immediately caught a cold. Perhaps too much rest? Too much fresh air? Is there such a thing? The funniest part was thinking of Uncle Geoffrey (now nicknamed Rev. G. For Reverend Geoffrey! ) arriving in Palm Springs on motorcycle after his trek cross country and wondering what he must have thought about the desert and it s palms after all his years back east and in the Caribbean? We will have to ask him to tell us about it some time. Or perhaps you already know- you are the historian of the family! Just a funny thing for you to think about!
Much Love,
Alexis
As for the clinical trial I pray that you get in as it will be another piece of artillery against the cancer. Of course, you being you, are worried about missing my wedding. That shows you have not lost your inner self in all of this! You know the drill-you’ve been down that aisle before so to speak! Your wanting to be there is as good for me as you being there. But there are also the islands that you wanted to get to. They are pinned to the ocean floor so they are not going anywhere! You will come when the time is right. It takes merely a plane ticket, straw hat and bathing suit to make it happen.
YOU are all of our priorities and getting you well is of the highest! I am rooting for you in California. I think of you daily and wish I could be there to hold you and stroke your forehead. Think of all of us surrounding you and caring for you in those painful moments because perhaps that will ease the pain if just a little.
Danda, I love you and am glad to hear that your love for James and clearly is love for you make you smile. You deserve all the smiles he gives you. Hugs to you, Julian and James-I pray I see you all soon to give you a warm embrace.
I recently went to Palm Springs with some girlfriends for the weekend and what a hoot of a place. Stuck in the 50’s! Something about that warm desert air really appealed to me. Ironically I arrived back Monday and immediately caught a cold. Perhaps too much rest? Too much fresh air? Is there such a thing? The funniest part was thinking of Uncle Geoffrey (now nicknamed Rev. G. For Reverend Geoffrey! ) arriving in Palm Springs on motorcycle after his trek cross country and wondering what he must have thought about the desert and it s palms after all his years back east and in the Caribbean? We will have to ask him to tell us about it some time. Or perhaps you already know- you are the historian of the family! Just a funny thing for you to think about!
Much Love,
Alexis
Monday, April 12, 2010
Pink Warrior
My dear friend,
I am so sorry to hear that you are having a difficult time. I heard a song the other day that I think you would like. Maybe it will empower you when you are feeling down. I was introduced to it through the website for the Susan G. Komen walk I am doing. It is called, "Pink Warrior". I particularly like the following verse.
Got an army of angels marchin around with her
She won't give in
Yeah she's gonna win
She's a pink warrior!
You my friend definately have an army of people that are with you through this fight, every step of the way and this is one army that will never retreat. You can find this song on itunes or probably youtube. It is called Pink Warrior by Candy Coburn.
So, to our very own Pink Warrior, you are stronger than you know. I love you and miss you so much. xxoo.
Mary
Waiting and Cocooning.
Dear All,
Another long silence from me... a reflection that I have had a difficult stretch where, more than ever, I seem to cocoon myself away, hoping that things will be better when I poke my head out.
Julian and I went to see the consultant, Dr. Slevin, that had been recommended to us by Dr. Plowman, on April 1st. A soft-spoken man, he briefly covered my history, reviewed the documents that Dr. Plowman had sent him, and conducted a clinical exam. He confirmed that while my breast appears to be almost clear of the tumor, the metastasis remain the areas of concern, especially my liver. As the next step forward, he advised trying to get me onto one of two clinical trials that are being run in London for women with my specific type of cancer and profile. He said that I was a very good candidate given how physically fit I was. So, we were told that we would hear back last week... but nothing.... we are hoping to be told this week. This limbo has been awful - days pass by and you feel as if your life is "on hold". Also because this dictates whether or not I will be able to be at Alexis' wedding or go to the Carribean at all. (The thought of not being there with/for her breaks my heart - I have been looking forward to this for so long and it means so much to me to be there). We all have our fingers and toes crossed that, whatever happens, it will be the best thing for me and my recovery.
So, as I wait to be told of the next turn in this marathon road, I have focused on trying to get my body strong - I have not had chemo in 5 weeks, and it has been almost 3 weeks since the scans. Unfortunately the flu really knocked me down, and I can honestly say that only know have I begun to feel "clear" of it.
The worst bit of the past two weeks, however, has been the pain. I am now on daily, heavy pain meds, and the aches and shooting cramps are enough to take my breath away. They appear at the strangest of times, in different places, and they can escalate within minutes. Two nights ago, I woke up at 5:00am and was a mess. I would have done anything for a shot of morphine the pain was so excruciating. Hot packs add little comfort in those moments, but I always try whatever may help. So, I have spent days feeling miserable and very tearful, curled up in a ball wanting to "sleep it off", only to find the pain waiting for me when I wake up. This has really been an awful period for me. Admittedly, my morale and mindset have taken a beating.
But on a happy note ( there is always one!) James has been a sweetheart - he is so aware of my emotions, and such a wonderful combination of playful enthusiasm and cuddle comfort. He has been imitating more and more words, and is incredibly vocal in his expressions. Easter morning, he was introduced to chocolate (in the form of little smarties) and he was ecstatic - "Mmmmmm, Mama, Mmmmmmmm! We had a cosy day together, and a brief walk in the park, and lots of play time at home.
I have attached a video of James at my parents' house, looking a some ladybugs on the window sill (Note: he did not injure any of them with the doorstop he was holding in his hand!). I just love his innocent excitement. I just love all of him!
Another long silence from me... a reflection that I have had a difficult stretch where, more than ever, I seem to cocoon myself away, hoping that things will be better when I poke my head out.
Julian and I went to see the consultant, Dr. Slevin, that had been recommended to us by Dr. Plowman, on April 1st. A soft-spoken man, he briefly covered my history, reviewed the documents that Dr. Plowman had sent him, and conducted a clinical exam. He confirmed that while my breast appears to be almost clear of the tumor, the metastasis remain the areas of concern, especially my liver. As the next step forward, he advised trying to get me onto one of two clinical trials that are being run in London for women with my specific type of cancer and profile. He said that I was a very good candidate given how physically fit I was. So, we were told that we would hear back last week... but nothing.... we are hoping to be told this week. This limbo has been awful - days pass by and you feel as if your life is "on hold". Also because this dictates whether or not I will be able to be at Alexis' wedding or go to the Carribean at all. (The thought of not being there with/for her breaks my heart - I have been looking forward to this for so long and it means so much to me to be there). We all have our fingers and toes crossed that, whatever happens, it will be the best thing for me and my recovery.
So, as I wait to be told of the next turn in this marathon road, I have focused on trying to get my body strong - I have not had chemo in 5 weeks, and it has been almost 3 weeks since the scans. Unfortunately the flu really knocked me down, and I can honestly say that only know have I begun to feel "clear" of it.
The worst bit of the past two weeks, however, has been the pain. I am now on daily, heavy pain meds, and the aches and shooting cramps are enough to take my breath away. They appear at the strangest of times, in different places, and they can escalate within minutes. Two nights ago, I woke up at 5:00am and was a mess. I would have done anything for a shot of morphine the pain was so excruciating. Hot packs add little comfort in those moments, but I always try whatever may help. So, I have spent days feeling miserable and very tearful, curled up in a ball wanting to "sleep it off", only to find the pain waiting for me when I wake up. This has really been an awful period for me. Admittedly, my morale and mindset have taken a beating.
But on a happy note ( there is always one!) James has been a sweetheart - he is so aware of my emotions, and such a wonderful combination of playful enthusiasm and cuddle comfort. He has been imitating more and more words, and is incredibly vocal in his expressions. Easter morning, he was introduced to chocolate (in the form of little smarties) and he was ecstatic - "Mmmmmm, Mama, Mmmmmmmm! We had a cosy day together, and a brief walk in the park, and lots of play time at home.
I have attached a video of James at my parents' house, looking a some ladybugs on the window sill (Note: he did not injure any of them with the doorstop he was holding in his hand!). I just love his innocent excitement. I just love all of him!
Hugs to all.
Sunday, April 4, 2010
Pink gloves and Easter blessings
Danda and family,
I hope you are having a gorgeous, happy day with spring flowers and a brimming basket of eggs for James and whatever else goes on for Easter Sunday in London. Rabbits are gamboling in our sunny yard but alas no children--all spending Easter elsewhere. However, we can't complain as we just spent five fun-filled days in San Diego with the two Seattle grandchildren and their parents and we will be with the three others within the next five days.
Loved the pink glove dance that Lolilla sent you! I hope everyone whom you see at the doctors' offices and in hospital when you have to go there is as spirited and full of hope as those folks! Very affirming.
I hope today your back and every other part of you is pain free. Ditto tomorrow.
Love to you and to all those who surround you and to all your troops around the globe, constantly awed at your forthrightness and grit and soul.
I hope you are having a gorgeous, happy day with spring flowers and a brimming basket of eggs for James and whatever else goes on for Easter Sunday in London. Rabbits are gamboling in our sunny yard but alas no children--all spending Easter elsewhere. However, we can't complain as we just spent five fun-filled days in San Diego with the two Seattle grandchildren and their parents and we will be with the three others within the next five days.
Loved the pink glove dance that Lolilla sent you! I hope everyone whom you see at the doctors' offices and in hospital when you have to go there is as spirited and full of hope as those folks! Very affirming.
I hope today your back and every other part of you is pain free. Ditto tomorrow.
Love to you and to all those who surround you and to all your troops around the globe, constantly awed at your forthrightness and grit and soul.
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