Posts
Three weeks between chemo sessions feels quite long - I am now entering my third week which means that I feel pretty good ( and have been really happy to be driving again - I wasn't allowed to drive for a certain time because of the hysterectomy - weak muscles.) I and am sort of anticipating the second session of chemo acknowledging what so many people say, that chemo is cumulative and that the reactions to it tend to intensify. So I will stay in the moment, and Be Here Now! 'BE HERE NOW' is a talk that I heard for the first time on a scratchy cassette of Baba Ram Dass that Steve made me listen to when we lived in Paris in 1970! Although I was a bit dubious at first, it sounded as if doing that meant denying what needed to be changed in the world. I listened with some interest because, after all, I was in love with the man who said this was an important message! Here we are nearly 40 years later and that phrase rings truer than it ever has - but now it is also imbued with the understanding and experience of my own life. I have always held such tender gratitude for the door that Ram Dass opened in our lives, and that led to such fascinating and meaningful learning.
Monday, September 28, 2009
Friday, September 25, 2009
My dancing body is back again!
I am moving around in my body ready to dance!
Yesterday I was given the total gift of two hours with Doug Heel, a wonderful, physio-magic man / Muscle Activation specialist. Whatever Steve had said to him in asking him in making an appointment about my frozen back, must have worked. Doug sensed that the right thing to do was to come over – and he did - on a public holiday. I was totally captured by this young, radiant, focused and visionary man who has such brilliant skill.
With deft touch (read: "ouch-aaahhhh!) and sense of humour as well as superb understanding of a whole other level of how the body works… He moved me from living in an ever-shrinking space in my body to returning to the whole of it! Joy and tears to reconnect once again with a body that has done its best to survive and keep me going these many years, within the feeling and thought strictures that I have unknowingly imposed on it. I loved one of the things he said, which I cannot quote exactly, but was about him enabling people to free up their bodies into full activation so that their true selves could be well-housed. Thank you Sam for the connection to him.
Yesterday I was given the total gift of two hours with Doug Heel, a wonderful, physio-magic man / Muscle Activation specialist. Whatever Steve had said to him in asking him in making an appointment about my frozen back, must have worked. Doug sensed that the right thing to do was to come over – and he did - on a public holiday. I was totally captured by this young, radiant, focused and visionary man who has such brilliant skill.
With deft touch (read: "ouch-aaahhhh!) and sense of humour as well as superb understanding of a whole other level of how the body works… He moved me from living in an ever-shrinking space in my body to returning to the whole of it! Joy and tears to reconnect once again with a body that has done its best to survive and keep me going these many years, within the feeling and thought strictures that I have unknowingly imposed on it. I loved one of the things he said, which I cannot quote exactly, but was about him enabling people to free up their bodies into full activation so that their true selves could be well-housed. Thank you Sam for the connection to him.
Tuesday, September 22, 2009
An Ordinary Day
Today was a pretty ordinary day. Maryse had good energy, and it was warm & sunny, finally. We took the mother-in-law to Kalk Bay for lunch and then looking out to see if there were any whales visible in the bay. Saw a couple fins and maybe a tail. The whales clearly are attending to other things and must have forgotten our appointment to meet. Nice light lunch at the Olympia Cafe - Thai chicken soup, tasty. Looked through art galleries, bought a couple very low cost little pieces of creativity. Walked the street, enjoyed the first warm day in - how long? A fine thing to not feel chilled and our house is warm today, yea! Garden got cleaned, some visitors here, phone calls, and it was a good day overall.
Monday, September 21, 2009
The Energy Returns
Hey, I am BACK!
What a week it has been. After the one great day following chemo – I plunged into the deepest fatigue I have ever experienced. The sensation of all energy flowing out of every part of my system, not being able to do anything about it and letting myself experience this utter weakness… There wasn’t even the energy to wish things were different. Just as well. I think it means practicing the ability to surrender. No choice.
That night Marian came to Maryse-sit, while Steve went out – I was pampered exquisitely with gentle dinner, easeful backrub, poetry reading… aahh, FRIENDS. I do trust that you each know how much you are contributing to easing my experience. Each day I continue to receive myriad expressions of friendship that magically find their way to nurture and inspire me.
Yesterday, a little more strength. I have maintained my telephone coaching clients from Europe. These coaching hours are so generative, and give me so much joy, as I engage and celebrate the women facing their lives and challenges with fierce courage. The sessions are stimulating and give me an opportunity to keep a connection with work.
And now, as I write,
What a week it has been. After the one great day following chemo – I plunged into the deepest fatigue I have ever experienced. The sensation of all energy flowing out of every part of my system, not being able to do anything about it and letting myself experience this utter weakness… There wasn’t even the energy to wish things were different. Just as well. I think it means practicing the ability to surrender. No choice.That night Marian came to Maryse-sit, while Steve went out – I was pampered exquisitely with gentle dinner, easeful backrub, poetry reading… aahh, FRIENDS. I do trust that you each know how much you are contributing to easing my experience. Each day I continue to receive myriad expressions of friendship that magically find their way to nurture and inspire me.
Yesterday, a little more strength. I have maintained my telephone coaching clients from Europe. These coaching hours are so generative, and give me so much joy, as I engage and celebrate the women facing their lives and challenges with fierce courage. The sessions are stimulating and give me an opportunity to keep a connection with work.
And now, as I write,
Friday, September 18, 2009
18th September
The end of my 60th birthday, found me at my i-Group (men's circle) where I told MY current piece of this story. It was very good to be surrounded and encompassed by men that I have history with. A fine, simple meal was provided, I had some rants, let off a bit of steam, got hugs and waswell honored on my 60th, followed by champagne and cake. I needed some good feeding of both food and man vibes. Good to let down my protective armor a bit. Gotta work on that.
Hugely pleased that Maryse, for the moment is only experiencing fatigue, not other side effects, other than a bit of loss of appetite. I don't blame her for that...I made a really horrid soup last night, put me off too. In trying to cook too consciously and appropriately, I created something that went from stove to down-the-toilet without passing through people. Voila!
Hugely pleased that Maryse, for the moment is only experiencing fatigue, not other side effects, other than a bit of loss of appetite. I don't blame her for that...I made a really horrid soup last night, put me off too. In trying to cook too consciously and appropriately, I created something that went from stove to down-the-toilet without passing through people. Voila!
Wednesday, September 16, 2009
Two Days After Chemo
Great night, happy to say we both slept well, and I got my birthday hug just after midnight, which was really really nice.
We went out for a good breakfast, both of us, with Valerie Morris and Judy Bekker, our pals. But just that hour wiped Maryse out, with chemo induced fatigue. This was described to us as probable, although we somewhat thought it had been avoided, but no. So she's on the couch and on her bed and likely so stay there for today. Playing Beethoven I believe.
We went out for a good breakfast, both of us, with Valerie Morris and Judy Bekker, our pals. But just that hour wiped Maryse out, with chemo induced fatigue. This was described to us as probable, although we somewhat thought it had been avoided, but no. So she's on the couch and on her bed and likely so stay there for today. Playing Beethoven I believe.
Tuesday, September 15, 2009
Chemo 101
Hello!
I really didn't think that I would be writing today but here I am. You guys are doing your work so well that it is working beyond my imagination! Thank you, thank you.
Yesterday was fine, really felt like the novice going in to the oncology clinic.
I was happy to be the first patient there, and as some had told me, the nurses are terrific and the atmosphere - very fine. I so appreciated the nurse who hooked me up. The care, the attention to detail and the very warm and engaging way in which she described me what she was doing, what to anticipate, etc. As the other patients came in, there were welcoming 'hello's' as people settled into their chairs and out came their knitting, magazines, etc. I was given an injection to relax and possibly sleep, then warming my arm so the vein would be easy to locate - all was a smooth procedure.
I really didn't think that I would be writing today but here I am. You guys are doing your work so well that it is working beyond my imagination! Thank you, thank you.
Yesterday was fine, really felt like the novice going in to the oncology clinic.
I was happy to be the first patient there, and as some had told me, the nurses are terrific and the atmosphere - very fine. I so appreciated the nurse who hooked me up. The care, the attention to detail and the very warm and engaging way in which she described me what she was doing, what to anticipate, etc. As the other patients came in, there were welcoming 'hello's' as people settled into their chairs and out came their knitting, magazines, etc. I was given an injection to relax and possibly sleep, then warming my arm so the vein would be easy to locate - all was a smooth procedure.
Monday, September 14, 2009
Back to home
Retrieved Maryse at 3:00pm after the six-hour dripfest. Quite a lot of relief in me to see her looking good, and feeling OK but so very tired. They told us to expect that.
Hard
Took Maryse to the oncology unit at Constantiaberg at 9:00, to the lounge-like setting where cancer patients receive their chemotherapy. It was to be a 5-6 hour long day in her chair. A good, caring atmosphere I thought, but still...
Sunday, September 13, 2009
the day before first chemo experience
I love my new look too, even though I am still taken by surprise each time I go past the mirror!
I am relieved that tomorrow starts the chemo - because it is an action towards, another step forward to engage with.I look upon it as another initiation, a crossing of a threshold. I will know different things after that experience. These past 3 weeks have held a number of different levels of initiation - facing the word 'cancer' is one. That word comes with such a huge and powerful construct of beliefs and attitudes, with a jungle of feelings running through every space. I am acutely aware of walking quite a delicate path between being true to myself, listening honestly to my body, and feelings, and at the same time not taking on the whole overpowering cancer construct that is so present in the world and that can be seductive at the same time.
I am relieved that tomorrow starts the chemo - because it is an action towards, another step forward to engage with.I look upon it as another initiation, a crossing of a threshold. I will know different things after that experience. These past 3 weeks have held a number of different levels of initiation - facing the word 'cancer' is one. That word comes with such a huge and powerful construct of beliefs and attitudes, with a jungle of feelings running through every space. I am acutely aware of walking quite a delicate path between being true to myself, listening honestly to my body, and feelings, and at the same time not taking on the whole overpowering cancer construct that is so present in the world and that can be seductive at the same time.
Thursday, September 10, 2009
An afternoon at the hairdresser.
And, perchance, should you wish to see the whole, way-cool creative hair-cutting process, click HERE for the 3 minute video. (I have fixed the soundtrack)
Anyway, fun was had. Peter had carte blanch to create, and in the process turned Maryse facing away from the mirror, so only at the finale did she see the result. This had the added benefit of making it easier for me to shoot.
If ya gotta do something, do it in style.
moving forward
hello everyone and welcome to new friends, thank you for your messages and emails of love and support. Slowly my 'team' is coming together. yesterday morning I began the day with my first acupuncture treatment with Phil Burnham. It was a gentle time. Acupuncture can really provide a powerful support for the immune system and many other aspects of my health as I receive chemotherapy.
And I have happily begun my mindfulness meditation on the breath.Using Simon Whitesman's simple and gentle CD I am learning - just 15 minutes at a time for a start - to lightly keep the focus on my breath. I am a novice but that 15 minutes in the morning and in the evening make an incredible difference in my own sense of inner stillness. This afternoon I go for my new alternative short short short haircut! that will prepare me for my champagne and shave party soon!!And Monday I begin the Chemotherapy treatment - I have been asked to bring my own snack and lunch as I should be receiving medication via I V for about 5 to 6 hours! quite long. I will be well equipped with my current novel: The Girl with the Dragon Tattoo, and interesting things to listen to on my Ipod - and occasional visitors. It is good to have had this time to get ready for this.
This is the short update - however if you want to read further do.....
And I have happily begun my mindfulness meditation on the breath.Using Simon Whitesman's simple and gentle CD I am learning - just 15 minutes at a time for a start - to lightly keep the focus on my breath. I am a novice but that 15 minutes in the morning and in the evening make an incredible difference in my own sense of inner stillness. This afternoon I go for my new alternative short short short haircut! that will prepare me for my champagne and shave party soon!!And Monday I begin the Chemotherapy treatment - I have been asked to bring my own snack and lunch as I should be receiving medication via I V for about 5 to 6 hours! quite long. I will be well equipped with my current novel: The Girl with the Dragon Tattoo, and interesting things to listen to on my Ipod - and occasional visitors. It is good to have had this time to get ready for this.
This is the short update - however if you want to read further do.....
Tuesday, September 8, 2009
Acting Balanced - a balancing act!
Amazing what some good sleep can do. Yesterday's great session with Dr. Simon W. gave us some great direction in ways to support Maryse's chemotherapy with mindfullness meditation, nutrition, acupuncture and other good-sense support. I feel more in focus and Maryse does too.
Friends: I ask that you think carefully before you send us suggestions for this or that healer, plant extract, diet, drops, visits to Mexico or South America and the rest. I really do understand the love and care with which these are sent, but...
Down at the left is a link to Snopes, a clearinghouse for internet rumors. The link takes you to Snopes entertaining composite of medical misinformation flying around before showering us. I speak for myself of course.
Friends: I ask that you think carefully before you send us suggestions for this or that healer, plant extract, diet, drops, visits to Mexico or South America and the rest. I really do understand the love and care with which these are sent, but...
Down at the left is a link to Snopes, a clearinghouse for internet rumors. The link takes you to Snopes entertaining composite of medical misinformation flying around before showering us. I speak for myself of course.
Monday, September 7, 2009
Getting a grip!
Maryse and I spent a most stimulating and soothing hour in counseling with our good friend Dr. Simon Whitesman. Simon is compassionate and full of wisdom in body-mind medicine. He gives us great confidence around helping us to gather our resources and has been incredibly useful and straight forward. Having a medical practitioner operates this way is golden.
Especially one who says "Keep an open mind - but not so open that your brains fall out".
Especially one who says "Keep an open mind - but not so open that your brains fall out".
That's my kinda guy.
Monday...
Hello again everyone
Thanks for your very supportive comments on my writing – I never thought I would begin to be bold enough to write in such a public way!! I realize that one of the inhibitors is that I so want to make sure that I am connecting with each one of you. That is why it is easy to write individual emails because then I have a sense of ‘docking’ with you (docking as space ships do!) and the way I connect with each friend has a slight shift or individual colour that is to do with the unique aspect of our relationship. Judging from all your emails and blog comments I managed to do it collectively, Yay!
I feel as if I am waiting and waiting for the chemo to start… got to give my body a good chance to recover from the hysterectomy. The operation seems so much in the background now but I know my system deserves the time and gentle ease to renew from that trauma and to be strong enough to engage with the next part of the process.
Thanks for your very supportive comments on my writing – I never thought I would begin to be bold enough to write in such a public way!! I realize that one of the inhibitors is that I so want to make sure that I am connecting with each one of you. That is why it is easy to write individual emails because then I have a sense of ‘docking’ with you (docking as space ships do!) and the way I connect with each friend has a slight shift or individual colour that is to do with the unique aspect of our relationship. Judging from all your emails and blog comments I managed to do it collectively, Yay!
I feel as if I am waiting and waiting for the chemo to start… got to give my body a good chance to recover from the hysterectomy. The operation seems so much in the background now but I know my system deserves the time and gentle ease to renew from that trauma and to be strong enough to engage with the next part of the process.
Saturday, September 5, 2009
hello everyone ! this is Maryse at last. those of you who know about me and writing will smile and appreciate what it means for me to out there in written words...... scary. but your love, messages, support are so wonderfully compelling, I just have to and also so that Steve stops nagging me to.
10 extraordinary days - an earthquake full of shock shudders - each shudder giving a tiny tiny insight into sadness, grief, fear and loss. Some of those feelings come up as a wave on occasion and recede . Mostly I feel well as I recover strongly from the hysterectomy. It is the strangest feeling to be told that I am very ill when I do not feel it ... weird
I have to describe to you the experience of being the recipient of your love, concern, support - I wish everyone could have that experience just for a moment... It was like being the centre of everyone's universe... floods of light around me, flowers everywhere I looked, being looked at by you with eyes of utter tenderness, potent love, laughing in assurance, and so experiencing my own grandness because of it. Did any of you every play the game when a person is placed on their back lying on the ground and their friends all put their hands underneath them and gently lift them up high above their heads and then sway them sweetly back and forth? it is both like being free and flying while being fully supported in a web of love - just blissful. That is what you let me experience this past week.
Added to that was the beginning awareness that I have seeded this love too and that part of it is my harvest. It was as if every appreciation, every honouring, every loving moment, every listening space that I have given to anyone at anytime was returned back to me a hundredfold. That feels so good. I have been true to myself and I am now being gifted by your fabulously generous support.
Please keep writing and sending stories, jokes, images and metaphors. I love it all.
Also if you have information about different treatments etc we are gathering information and will discern what is for me to do. I am happy with my oncologist and will gather the team around myself so that I can move into this phase of my life wholeheartedly with the most accurate support.
My life and that of those close to me has changed track and it is completely different - it is no less challenging, inspiring, surprising and deeply touching! Steve and Talia and Deborah are absolutely extraordinary in their clarity of love - what a gift!
well done to you who have read to the end!!
10 extraordinary days - an earthquake full of shock shudders - each shudder giving a tiny tiny insight into sadness, grief, fear and loss. Some of those feelings come up as a wave on occasion and recede . Mostly I feel well as I recover strongly from the hysterectomy. It is the strangest feeling to be told that I am very ill when I do not feel it ... weird
I have to describe to you the experience of being the recipient of your love, concern, support - I wish everyone could have that experience just for a moment... It was like being the centre of everyone's universe... floods of light around me, flowers everywhere I looked, being looked at by you with eyes of utter tenderness, potent love, laughing in assurance, and so experiencing my own grandness because of it. Did any of you every play the game when a person is placed on their back lying on the ground and their friends all put their hands underneath them and gently lift them up high above their heads and then sway them sweetly back and forth? it is both like being free and flying while being fully supported in a web of love - just blissful. That is what you let me experience this past week.
Added to that was the beginning awareness that I have seeded this love too and that part of it is my harvest. It was as if every appreciation, every honouring, every loving moment, every listening space that I have given to anyone at anytime was returned back to me a hundredfold. That feels so good. I have been true to myself and I am now being gifted by your fabulously generous support.
Please keep writing and sending stories, jokes, images and metaphors. I love it all.
Also if you have information about different treatments etc we are gathering information and will discern what is for me to do. I am happy with my oncologist and will gather the team around myself so that I can move into this phase of my life wholeheartedly with the most accurate support.
My life and that of those close to me has changed track and it is completely different - it is no less challenging, inspiring, surprising and deeply touching! Steve and Talia and Deborah are absolutely extraordinary in their clarity of love - what a gift!
well done to you who have read to the end!!
Friday, September 4, 2009
Thursday's Oncologist appointment
Well Friends, we didn't learn much different than we already knew, though in some more detail.
Maryse has endometrial cancer (originating in the uterus) manifesting in her liver. There are six spots on her liver and she will have to start chemotherapy as soon as she is well enough healed from the hysterectomy. At this time there is no spread evident. Since chemotherapy kills growing cells, it is not advisable to start sooner than 10 days from now or so. The first session is scheduled for the 14th of September.
Maryse is in otherwise excellent health, healing rapidly, strong and remarkably upbeat on facing this challenge - as she has faced other challenges.
She WILL lose her hair. For sure. Her decision is whether to have a champagne party and shave it off now, or go and have a stylish very short haircut and shave it later. Better than finding loads of hair on the pillow in the morning.
The chemo will be one session every 3 weeks for six cycles. Side effects are so variable, that her response will be unknown until it happens. Nausea, vomiting, diarrhea, constipation, mouth ulcers are the some of the possible side effects. They might not happen, or might happen intensely.
And as for me, I am riding the shock waves. Each time I hear Maryse, almost brightly, explaining over and over, to each concerned friend who calls, I feel like I am being hit with a bat again and again. I guess I better get used to it.
So into the mystery we go. Maryse will continue to work, and will time her work in phase with the chemo.
That's the current state. Thanks - and by the way, please, if you are going to phone, not after 8PM or too early. Steve
Maryse has endometrial cancer (originating in the uterus) manifesting in her liver. There are six spots on her liver and she will have to start chemotherapy as soon as she is well enough healed from the hysterectomy. At this time there is no spread evident. Since chemotherapy kills growing cells, it is not advisable to start sooner than 10 days from now or so. The first session is scheduled for the 14th of September.
Maryse is in otherwise excellent health, healing rapidly, strong and remarkably upbeat on facing this challenge - as she has faced other challenges.
She WILL lose her hair. For sure. Her decision is whether to have a champagne party and shave it off now, or go and have a stylish very short haircut and shave it later. Better than finding loads of hair on the pillow in the morning.
The chemo will be one session every 3 weeks for six cycles. Side effects are so variable, that her response will be unknown until it happens. Nausea, vomiting, diarrhea, constipation, mouth ulcers are the some of the possible side effects. They might not happen, or might happen intensely.
And as for me, I am riding the shock waves. Each time I hear Maryse, almost brightly, explaining over and over, to each concerned friend who calls, I feel like I am being hit with a bat again and again. I guess I better get used to it.
So into the mystery we go. Maryse will continue to work, and will time her work in phase with the chemo.
That's the current state. Thanks - and by the way, please, if you are going to phone, not after 8PM or too early. Steve
Thursday, September 3, 2009
Your thoughts
I/We are incredibly appreciative of the warmth flowing our way from you. The love has been a balm. So here we are pre-oncologist meeting today at 2pm. I am in suspended animation in every sense, not thinking too well at the moment. I hope to be thinking better later.
Tuesday, September 1, 2009
Intensity
Maryse's appointment with her gynecologist was moved up to today since a space opened up. And we have had a very intense day.
She had a scan on Thursday and the results showed cancer in her liver, most likely originating in the uterus. This is very scary for me, but we will move through this with your support and love. We have an appointment on Thursday the 3rd of September with the oncologist to see what the treatment will be.
We of course rely on your support to lubricate this phase of our journey. Steve
She had a scan on Thursday and the results showed cancer in her liver, most likely originating in the uterus. This is very scary for me, but we will move through this with your support and love. We have an appointment on Thursday the 3rd of September with the oncologist to see what the treatment will be.
We of course rely on your support to lubricate this phase of our journey. Steve
There has been such a wonderful outpouring of love for Maryse and support from our network everywhere - we are deeply appreciative of your generosity.
It is getting somewhat daunting to keep up with the many emails, sms-es and phone calls of support. Every one is appreciated, but it is getting increasingly harder and harder to respond to say ‘thanks’ and acknowledge that we have received your love. It is also getting more difficult to bring each one up to date in a way that answers questions and is reassuring.
So I am making a little place online: http://beingmaryse.blogspot.com/ that Maryse and I can post to for updates. So if you want to follow this journey that Maryse and the Baraks are on, visit that site to get updates and thoughts. Also you will be able to send your loving vibes that way too. In this way, we will be able to concentrate on what we have to do and be less concerned that we are making sure to connect with everyone who cares.
Hopefully this will be a good plan. If you will look there before calling for info it will help us.
AND, Maryse doesn’t want the flow of loving communication to stop, just that we may well not acknowledge your communication. Keep ‘em coming.
It is getting somewhat daunting to keep up with the many emails, sms-es and phone calls of support. Every one is appreciated, but it is getting increasingly harder and harder to respond to say ‘thanks’ and acknowledge that we have received your love. It is also getting more difficult to bring each one up to date in a way that answers questions and is reassuring.
So I am making a little place online: http://beingmaryse.blogspot.com/ that Maryse and I can post to for updates. So if you want to follow this journey that Maryse and the Baraks are on, visit that site to get updates and thoughts. Also you will be able to send your loving vibes that way too. In this way, we will be able to concentrate on what we have to do and be less concerned that we are making sure to connect with everyone who cares.
Hopefully this will be a good plan. If you will look there before calling for info it will help us.
AND, Maryse doesn’t want the flow of loving communication to stop, just that we may well not acknowledge your communication. Keep ‘em coming.
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