Being Maryse

3rd Scan good!

2011-05-17T14:52:00.000+02:00

No news - is good news. Maryse had her 3rd scan since finishing chemo about 15 months ago, and all is well and clear. This post is just so that those following the Being Maryse blog know what we know. All is healthy and happy, working hard and most appreciative for each moment and each one of you who care. Merci.

Scan 2 is good!

2010-11-18T15:05:00.001+02:00

We've already had many wonderful expressions of congrats that Maryse 2nd scan was clear. I guess that she didn't post because it's her suspicion that no one is look is looking at this anymore.

I suspect that there are many friends who are using this avenue to follow her journey, so, if she won't, I will.

The scan was Thursday 4th Nov. I had been very anxious, and I don't know why. Maryse's health has been great, and energy fine, but somehow... The first scan after chemo was clear, but I thought that right after lots of doses of toxic stuff, all the bad stuff would be negligible. But somehow, given the way her hair returned with a vengeance, maybe some other growing cells might be recovering too. I don't voice this stuff, because I am the skeptical / cynical / nay-saying one. And I don't want to add to my disrepute.

So off we go to the scan, and blow-me-down if the car right in front of us at a LONG stop at the traffic light is a white hearse from the local undertakers and has a license plate starting with, really, 666. I am not into omens, but as omens go, this was not a good one. I began to sweat profusely but silently as we drove to get the results. Maryse is of course pretty chatty as normal - though later she said that this time she was concerned too. And she didn't even see the hearse.

It may be that Dr. Harris, Maryse's oncologist saw my/our face/s, as we walked in she said, almost abruptly, "The scan is clear." Followed by "Have a seat", and "How are you doing". That was exceedingly good. She did that the right way around. If she had begun with the small talk, I would have been bracing for badness. As it was we were happy and relieved.

The Big C poster

So, off to normal for a while.

We have been watching, via the Net, a new comedy series - black comedy - called 'The Big C'. Pretty funny, even though it's about a suburban Mom, played by the always excellent Laura Linney, who has terminal cancer and does not tell her family but instead decides to do whatever she wants. It's worth watching if you can.

But I couldn't - until AFTER the all-clear of the 2nd scan.

from Steve

2010-07-12T11:48:00.000+02:00

Just to say that all is well, although I am freezing my butt off here in Cape Town, while Maryse is off luxuriating in the light and warmth of France and Belgium. Maryse seems to be enjoying a lovely hot summer at luxury facilities as she works the Johnson & Johnson executive women's ASCEND programme. Of course, I love the cold, especially in our un-heated house wrapped in double fleecy layers.

But all is well, and we trust that it shall be so.

Coming out of the curve

2010-05-08T16:52:00.001+02:00

Happy news indeed! Thank you for all the joyful responses. I experience this current ‘clear status’ as partly the result of the intimate threading of the rings of love and active support around me. Also the powerful attitude of openness and trust – as one of you put it, in wishing me well before the scan ‘may today be joyful whatever the ‘results’ show.’ I think that is a key to this mysterious process. I am still on the same road. The landscape has changed and my resilience and experience of personal freedom is much much more palpable.

I am so glad that we did book our tickets to Croatia last year as a way of putting a stake in the ground of the future; knowing that if I couldn’t go, then losing some money was really not madly important. Making the booking was. So soon, very soon, we are off on this happy holiday with friends, to celebrate the life of one particularly awesome friend while delighting in beauty and pleasure. Eeeeeehhhhaaa!

Maybe as Steve says, he has, amongst all the other amazing things that he has done, been carrying the shadow for me. I don’t know. I do know that I have been acutely aware of doing what I can to be clear and not to deny aspects of this experience and the implications of it. There is always that voice that does say to me – hey giving thanks all the time is just a copout to really facing the dark. I don’t think so. I have also been playing with the wonderful ‘Amy’ question in Nancy Kline’s book: what do you know now that you will discover in a year? It is a brilliant question designed to dismantle denial. Well I know now that there is cancer in my body (as there is in everyone’s) I also may die of this disease or I may not; in a year I will have experienced another year full of shifts and changes no doubt; I know now that the foundations of my living are strong and flexible and that they will support me as life brings me new experiences.

These are some of thoughts passing through at this time – My heart is light as I step into the new part of this road. It has been 9 months since the cancer diagnosis in August. The cancer has dissolved layers of crust that hampered my expression… there is still a way to go. I believe that I am quite equipped to take on what else is to come. That may be about letting go of the cancer identity and no longer being ‘noticeable’; no useful ‘cancer card’ to pull out at times of convenience! Whatever, I am happy.

I trust you are not tired of hearing me thank you. Navigating this experience has been hugely supported by the consistent input of each one who chose to engage in their own particular and genuine way. Being in someone’s thoughts and heart matters. Even if there was a very light link with that person – met you once or so, the connection has life substance in it. When that life substance is focused in a particular direction with intention and love – something wholesome happens. I am convinced of that.

I believe that I played my part in owning my experience pretty well. The point that I am attempting to make is that I view this cancer experience and its current result as ‘collective work’ in certain ways. Conscious clear hearted intention coupled with openness to result is impactful. My experience has been about living inside a vibrant field/network. Obviously we live within vibrant networks/fields all the time. Having any kind of experience that pushes at the edges makes this vibrant field all the more real.

I just found this great quote, having used the metaphor of the ‘road’ and its ‘curve’, it is really apt: “The bend in the road is not the end of the road unless you refuse to take the turn.”
Blessings to each one.

GOOD SCAN!

2010-05-04T14:57:00.002+02:00

By George!.. That's where we were this last weekend - by George, in the Wilderness. If this is cryptic you are not from South Africa. Just back from a relaxing - invigorating weekend getaway for Maryse and me, using the cover of M's speaking at a Body Stress Release conference in the Wilderness.

Except for the actual 3 hours when she was doing her very well received talk on the Thinking Environment, the beach beckoned for long walks on pristine deserted strand, except for the occasional para-glider sliding over our heads, and the minions of dead jelly fish. Good exercise, excellent restaurants round about, organic market with lots of tie-dyed / leather craft / wood carvings right out of 1970s. (And I know, 'cause I was there) Great weekend but at the back of my mind was the big dark cloud of dread as we came up to Maryse's scan to determine whether the cancer had shrunk, remained the same or spread.

I sometimes think that I carry the 'shadow' for us as a couple. Maryse gets to be all light and easy and cuddly, and I... get the watchful, protective, dark scary pieces, the abrupt asker of straight uncomfortable questions . I do the "Have-you-made-sure-that-everything-is-locked?" piece. I do the thinking about the worst-case-scenario piece. I 'laughingly' say "That's what I was hired for..." I know that this is not completely true, but has a smidgen of truthiness to it.

So anyway, this morning, the scan. A very, long, long morning for me, looking at clocks as they swept closer to the 8:30 scan-time. And then the time after scan-time till the Oncologist said " It looks good".

BIG sigh of relief.... So the bottom line is: No SIGN of cancer for now. I am so happy and thrilled that my beautiful and lively woman is continuing to be beautiful and lively. (As for me, I continue to lurk in the shadows, because The SHADOW KNOWS!)

Upcoming scan May 4th

2010-04-27T12:12:00.002+02:00

I just read through my blog entries of the last 8 months. It is a good story. Lately I have been having very strong recall of some experiences and moments – the Van P’s bringing a French picnic for a Sunday lunch; utter weakness while strolling in Kirstenbosch; my 6oth birthday party; Valerie appearing in full protective kayak regalia after her first Cape river/canal adventure; moments and moments..the shock of that phone call telling us the results; Steve's face when he heard; the practical almost picnic-like preparation for the chemo sessions.. and on and on. When I see pictures of bald me it already seems like another person, as do the pictures of me pre-cancer. It is quite fun and useful to have images that depict different eras of growth and learning. My heart-vision of continuously becoming more and more myself is working.

Aware of preparing for my CAT scan on Tuesday. Until then my days are totally taken with work and part holiday as we travel up the Garden Route for a few days that include my giving a workshop at a conference near George. I feel very OK about the scan. Sometimes the thought comes that we may find more cancer in the liver.. but I feel so well and strong that it is hard to imagine that the cancer cells are multiplying even though there is a chance that they can. The only thing that is disturbing me a little is the idea that it may be difficult to put the iodine drip up since my veins are really in a bad way and I believe that they don’t return to their former glory! Deep breathing will see me through.

I notice that whenever I feel something not quite physically right, I wonder if cancer has crept into another organ.Imagination starts creating stories and I have to consciously bring myself back to the present moment . Other than that I never really think about the cancer at all. I am aware that my eating pattern has not been an easy one for my poor liver. I am back to loving sweet stuff, the occasional cup of good coffee, and other not-ideal stuff. I had a 'think' about my eating habits and came up with this liberating incisive question: If I knew that I love life more that I love 'dead' food how will I shift ? It is fine if it does not make sense to you – it only has to make sense to me! It works on occasion.

I wanted to connect with you all before this next step because your surround is such an integral part of my journey. A personal sense of autonomy over my own experience coupled with rings of utter love and support - Steve and daughters, friends and then other circuits of caring connection, seems to be a magic formula for journeying this path.
I will write again to let you know the results on Tuesday.
Meanwhile enjoy the picture of the Barak family taken on the day that Deborah returned to New York.

shifting gears

2010-03-07T09:19:00.002+02:00

Yes, it is a whole month since my last post. A full and wonderful month it has been with my hair growing back beautifully.The eyebrows that I have been longing for have returned, and now even my eyelashes have put in an appearance. I feel physically very strong and fit.

A month ago when I got the results of my scan I had a very different experience from all those around me. I was surrounded by people's huge delight and celebration for the news. My response as I described was happy and modest - it just felt like the next step. I even stepped on to the edge of feeling guilty that I was not as overjoyed as others. Certainly, I felt content and assured. What kept going through my mind was a quote from the Bhagavat Gita - 'In joy not overjoyed, in sorrow not dejected'. It is not a loss to not experience 'overjoy'. For me, having the experience of that kind of huge joy is a response to the surge of adrenalin that comes with deep relief that one's hidden fear has been wrong all along. So in a way, it is more about relief than delight. I don't know if that makes any sense to you. I didn't experience 'relief' because I hadn't feel anxiety. When I do come face to face with that fear and the rush of adrenalin is when our daughters are experiencing sorrow or big difficulty in their journeys. To maintain my internal balance and equanimity in the face of this remains a real challenge for me. Parenting is one of the forever learning journeys!

So I move forward in health, knowing that there is cancer in my liver. Feeling so healthy makes it quite hard to be disciplined in my eating habits, I have some work to do in letting go of sweet things etc. I am challenged to remain conscious of my patterns of rest and balance. These continue to be the lessons. Steve is researching and discussing with the oncologist any other methods of healing the cancer that remains. There may be interesting options.

I have met others on the start of their cancer experiences with whom I can share my story, listen to theirs and offer support and encouragement. I love the sense of service in this. Each person's experience is so very individual yet I can partner them with ease and assurance.

Looking back the whole experience has taken on dream-like qualities, a little like a movie that really engaged you fully when you saw it, but we are even out of the cinema now. Highlights stand out - too many to mention, most having to do with you and the gifts born of your encouraging and loving attention. I have been seen in a way that we could each constantly offer each other. The cancer mat arise again....That is possible. I say this because I feel secure in a reality that holds much unknown - it is good to feel increasingly comfortable in uncertainty. In fact everything is uncertain for everyone - I celebrate having a little of the certainty illusion dissipated for me.

I will keep the blog, but I may only post once a month or so. Steve has convinced me that it is worthwhile. I think he is right. Even when I am not writing I am thinking 'blog' and it serves to help me reflect. It also makes me acutely aware of the loving network of which I am a part. Thank you each one for the unique ways in which you have offered me care - I love going over all the names of the 'followers' - I get such a sense of delight from seeing your name and/or your picture.
Blessings to each one! Cheers.

Happy day!

2010-02-05T17:52:00.001+02:00

Thank you for all the great messages of support for today's scan and then the delighted ones at the results. You guys do your work so very very well! You have a HUGE impact on my health.
I felt good this morning as we went off for the CT scan. I sensed that it would be good news with some cancer spots remaining.
It was difficult to get into my vein for the iodine injection - the chemo has really damaged these helpful blood avenues. Finally I was hooked up and the iodine flowed - this time I anticipated the very weird heat sensation that comes with that solution and makes you feel like you are wetting yourself!
A couple hours later Steve, Deborah and I met with the locum oncologist. A sweet sincere young man who was warm and connective. My results were great as you know. The doctor was clear that we should not expect all the cancer to disappear but that for now we stay aware of the situation, that I keep doing what I love, eating healthily and going to gym and be HAPPY. That is easy.
Talia was waiting for us at home and we decided that one way of being happy together on this gorgeous Cape Town day was to go to Boulders and swim with the penguins! And we did. See the pic. I cannot remember the last time that the four of us were on the beach together. It was glorious. While driving home Steve described how for the first time in months he felt that he could breathe fully.
My upcoming weeks are full of work mostly away - but it is the stuff of meaning and purpose and it certainly makes me happy. Having Deborah here again is a blessing indeed.
No profound thoughts .. happy delight that I am where I am with the special ones around me, and hair that is growing.

GREAT SCAN RESULTS!

2010-02-05T12:28:00.000+02:00

Maryse has just had the results of her scan, and the six spots on her liver have reduced to 3 and those are much smaller. This is an excellent result - AND we have to keep monitoring and aware.

She will have checkups every three months to watch the situation- but the advice is "Go live and be happy" which is probably the same advice that they would have given if the result had been bad. Probably is the best advice anybody could get, Hey?

So, there it is. That is all for now, the Barak family is going to go out for a little beachy celebration or something. No doubt Maryse will post in a little bit.

beginning eyebrows!

2010-01-25T16:22:00.004+02:00

Yes it has been quite a long time since I last wrote. Meanwhile I see that there are a number of new people who have joined - welcome!

It is 3 weeks since my last (and final) chemo treatment and I am feeling GREAT. I swear there are tiny tiny hairs growing where my eyebrows are supposed to be. This pleases me immensely. I have become quite good at placing my false eyelashes so that they almost look real, and my hair is growing - about 5mms straight up and white!

Yesterday I was gifted with two gorgeous books: CrazySexy Cancer Tips by Kris Carr and Crazy Sexy Cancer Survivor also by Kris Carr. They are clever, useful, witty and touching. The author is in her early thirties so it is very orientated to that age - but the spirit of it just sparkles and last night as I was looking through them I was so enchanted by her energy and creativity. I resonated with the realistic and life affirming stance. And it made me laugh. (www.crazysexycancer.com)

In conversation with friends I have been reflecting on some of my learnings and insights of the past few months.

No matter how I may want to discuss my prognosis, possibilities of recurrence etc some people do not want to go there. I have learned to appreciate the broad diversity in each person's way of dealing with whatever meaning they attribute to 'cancer' and so am at peace with knowing that with some I can talk about this and with others I can talk about that. Everyone is on their own discovery with regard to what is emotional/scary/demanding etc and I think that they choose rightly for themselves how far or deep they want to venture for now. I respect that. Another letting go is the attachment to who I want to discuss particular things with. There is ample provision for all conversations but they may happen with unexpected people! There is nothing lacking.

Someone asked me if I had been doing much visualizing of myself as a healthy person. Although I have been a very ardent 'visualizer' (and having what I visualize come true!) I have not done it with this experience at all. I think beginning to practice the Mindfulness meditation brought me to the stillness of being here now as the most important thing. Being in the present is helpful in a zillion ways. I do believe that visualization with no attachment to the images that one creates is a powerful and superb tool. I have learned that intuitive wisdom given the space, will choose the way forward for the particular situation.

Steve's thoughts about now.

2010-01-12T09:10:00.005+02:00

My voice has been quiet lately on this blog. "Let Maryse tell her story", because I have done my job, set up the technical means, encouraged, pushed a little to make sure that she wrote. As always, I play the enabler and then back off. Sometimes that's appropriate and good, sometimes though, more is wanted from me. In this particular life-drama I am a central player.

Coming to the end of this chemo cycle, is scary for me too. It is like a hard journey across dry and unfamiliar rocky land,
...with few signposts as to whether we are headed in the right direction, but trusting that we will come to a safe and green place. Thankfully we have friends along the way to give some shelter and sustenance. But now, we arrive at a shore with vast seemingly calm-ish ocean in front of us. How far away is the distant shore? Is it a good normal place? It's always the question when embarking on a journey into unfamiliar territory. Terrifying? Interesting? Painful? Exhilarating? Becalmed? Fast, slow or all these in turn? I chose Maryse as my sailing companion those many years ago, and we are doing this trip together like we have traveled before. But I have been feeling seasick even before we came to this beach. Quick, the Dramamine!

I keep looking out for navigational sign posts. I got all my navigational gear, and the galley is stocked well, I hope, for this part of the trip.We are going to continue on, living each day as we have, enjoying our family, friends, lives to the max.

Maryse says that she thinks she is coming to the end of blogging here, but I hope not. I think that many of you, and others, are interested in her way of thinking and being, and not just the cancer part.

What do you think?

Post chemo with a bang!

2010-01-11T18:35:00.002+02:00

It has been a hard week. I last wrote on Wednesday anticipating my usual fatigue and then the gorgeous recovery. Ohhh expectations! that is the very stuff that takes me out of the present moment. It seems that the last chemo session was a unique one and it made me experience much of what I had missed over the last few months. So I got to have the yukky taste in my mouth, the great fatigue and the weakening diarrhea. Yes I am telling it like it is. I always have, so there. The energy just wasn't coming back and I really had to further let go to the reality and be gentle with myself. I realize that I thought that I have been gentle quite a lot - enough already! On Saturday morning, thinking that I was feeling better I invited Steve to walk the Green Belt with me. 150 metres in I had to sit down, recover and return home. That was quite scary...
This morning I went to gym and weakly did two slow circuits, then spent nourishing time with a friend, and like the magic that it is, the gates opened and the energy is now pulsing back.
There is no end to learning patience and the capacity to be mindful. Layer after layer. At the close of the Mindfulness meditation Simon speaks of using the breath as the place of anchoring at any time for any reason. I think that is the way for me to go - breathing to release the expectation of how my body should be, breathing and releasing any sense of disappointment, breathing and returning to the rhythm that is natural for me now.
Soon I will bring this blog to a close. It will be part of my returning to my life as fully as I know how. There are a few entries yet to go, I am sure. And I will want to share whatever the results of my scan will be on February 5th. But I sense that this is ending.
I send joyful love to you all which ever part of the world you are in. Thank you for the web of live friendship.

On the other side of chemo

2010-01-06T10:09:00.002+02:00

As you know Monday was my last chemotherapy session of the cycle. I went early for my blood tests. My poor vein could not fill two small tubes of blood and so had to go into another for the rest. The blood count was good and so off I went for my last session with the oncologist and the chemo. It was good to speak with the oncologist about how weird this ending was feeling and what we do going forward. I was delighted to hear that she too has been reading the blog on occasion.
I had a little anxiety about the difficulty of putting up the drip - but it was easy and immediate. I settled in for a good read and slept for most of the day. Saying good bye and thanking the nurses as I left - was quite emotional with hugs all around. Although I was getting prepared for this ending it was in my head only. I did not anticipate the rush of feeling in me and the sense of stepping into another landscape more alone this time. The oncologist said that one could not believe that something as strange as chemo would become an attachment and provide such a sense of security. My cancer marker results are good. In a month I will have an abdominal scan to see the size of the cancer spots on the liver. But for now it is time to return to my life full heartedly.

Right now I feel a little queazy from the chemo and tentative about what I have let go of. Although I am well, I feel more solitary, no more medical team back of me. As the hair, eyelashes and eyebrows return I learn to live with the ordinary wondrous every day yet keep aware of any sign that may tell me about further cancer growth. Weird. And from this side of chemo I realize that however subtly it snaked its way in - I did take on a partial identity of 'someone who has cancer' and now need to let that go.
What I realized with some surprise yesterday was that although I love the process of closure and making sure that it is well done so that the new can emerge unfettered, I did not do this for myself. Writing these few paragraphs is a way of bringing this cycle to an end. Yesterday when the oncologist phoned with my cancer marker results it was a great opportunity to tell her how I appreciated her ability to be so connective and straight talking, her impeccable specificity and her acknowledgement of what is unknown.
Another aspect of closure is looking back with gratitude at all the levels of learning that I have experienced and what has changed in me because of it. The Maryse that is walking into this new territory is not the same one that stepped into the cancer experience in August. Life keeps inviting more freedom of expression and assurance and that comes from stepping out into the unknown. I think that it is easier to do this when the territories are so clearly demarcated. Even as I am writing these words I experience the releasing of this initial cycle and the beginning of increasing space for the new. It is a good way to start the new year!

2010 and the last chemo

2009-12-30T16:06:00.003+02:00

This is a most wonderful holiday. Long days of leisure, no appointments to keep, reading novels, time at beautiful Stanford Valley, friends and family... It is a deep rest time with sunshine getting into the bones and even making my head a gentle brown. Tomorrow we return to Stanford Valley for another 3 days with friends and family to welcome the new year and let the old year go with a sense of blessing and gratitude for what has been. It is good to make space for the new.
We return on Sunday and early the next day I will have a blood test to check out my blood count. If it is high enough I will have my last chemotherapy treatment. It is 18 weeks since I began. I was remembering the first session and the subsequent intense and deep fatigue - the nature of which has never returned. I remember Marian massaging my sore back and later gently attempting to get me to eat a slice of toast. How different everything is now. My body is strong and vigorous, my fitness is slowly building up and my appetite is enormous! All my hair is gone - yes all - and I have developed a little expertise in placing my false eyelashes on more or less correctly. My head is tanned - same colour as my face and I feel confident walking around without a head covering.

It feels strange coming to the end of the chemo sessions....
We have navigated one territory and now I am on the threshold of a different land. The chemotherapy provided a structure, rhythm and ritual. It gave me a pattern which made some sense. That scaffold will be removed - that is how I see it. A month after the chemo I will have a CT scan to review the state of the cancer in my liver and also whether there is cancer anywhere else. Although the results at the half way mark were positive there are no guarantees. I think that one of the lessons of the past four months is to increasingly feel at ease with the unknown. Everything is unknown for all of us, but somehow we quickly latch on to false illusion /assurance about how life will flow. Life does indeed always flow and is consistently true but it is so much more winding and mysterious than we can imagine. In preparing to enter this new territory I am thinking about the plan or structure that I will design with the help of others, to continue a more conscious support and love for my system. There is a sense of empowerment in choosing what to do and how to act.

What an amazing year it has been - and you know, I would not change the last 4 months. This time has been such a potent gift in understanding what matters to me and in deeply experiencing the power of love given in such diverse ways. Steve has been an extraordinary and genuine partner in this whilst managing his own unique journey.

I wish you all a most happy new year. May 2010 begin to reveal the shifts in many people's hearts, may we give with generosity of spirit and may we love with no attachment. May we do what we say.

gorgeous summer

2009-12-20T11:15:00.003+02:00

A whole full week has gone by since my last entry. It has been a very full time. Working 2 days after chemo was harder that I expected. My low energy was not helped by the fact that I was the only one staying in this vast and empty conference centre and our workshop was the only one happening. It was as if extra energy was required to make up for the sense of void in the rest of the place. Still it all worked out in the end and I knew that I just needed one further push for the facilitation that I had scheduled for the next day... p u s h ... And even as I was doing that I could feel my natural energy returning. It is such an extraordinary sensation when the turn-around happens. It is as if many, many cells that have been dormant or maybe flattened by the chemicals, start to revive and begin to generate their own energy. I feel rivers of life begin to flow through me - and everything changes.

The holiday time has begun, with relaxation and much festive eating with different ranges of friends and family.

My biggest challenge at this time? Learning to put on my false eyelashes...
It is quite a simple process really. Put a thin strip of glue on the lashes and a very thin strip on the edge of my eyelid. Then carefully place the false strip of eyelashes right on the edge of the eye lid so that it looks natural. See? Quite easy. However - if like me, your eyesight is getting worse by the day, this simple exercise becomes almost an impossibility because you cannot do it with glasses on! Even magnifying mirrors don't work well enough. I put the lash on, then put on my glasses to see the mess that I have made and often it is just that. A mess - and I have to start again. Why do it, you may ask? In this, my vanity is stronger than my willingness to look like an alien with no eyebrows, lashes etc. So, I devise all sorts of lighting techniques to help me see what I am doing and try breathing out my sense of frustration.

I have my final chemotherapy session coming up on January 4th. A month after that I will have a scan to see what the effect of the chemo has been. It feels like that will be the start of a whole new pathway of choice and decision. No more chemo for now for sure, maybe other ways of dealing with the results that we find. I know that there will be an adjustment to NOT having chemo and the rhythm and sense of confidence that that brought.

I am mentioning this because I am beginning to gently think about it.

I look back on the last three and a half months and I am so grateful for this rich experience with all the stretching that it generated for me and for you.In these coming days of holiday at Stanford Valley I want to find ways to express my gratitude for all the learning and the gifts from this time of my life and the parts that each one of you played in unique ways that you may or may not know.

Into the last stretch

2009-12-13T12:13:00.001+02:00

Yes I had my chemotherapy on Friday - all the good chants and songs for a higher blood count worked! I got the call that chemo was on and with great enthusiasm packed my bag for a day of 'relaxation'. One try on my left hand vein - no go - so the drip went into my arm but it is clear that the veins on that side are ruined. Next and last time will be on my right hand. Thanks for all of you who kept thinking of the golden honey flowing through ...

Some fatigue and yukki taste in my mouth and all is well.

I fly to Johannesburg this afternoon for a day's work tomorrow, one more work day after that and then it is holiday time!! Yay! My last chemo session is supposed to be on January 4th and then a month following that I will have a scan to see the state of the liver.

My brain is very fuzzy, not much coherent thinking going on, but always the spirit of appreciation for your consistent and loving support, and for the mystery of life itself.

No Chemo Today

2009-12-09T13:46:00.002+02:00

Thank you all for your wonderful messages of 'golden honey flowing in my veins' but it is not to be today.

I am feeling so frustrated - I thought I would write immediately so that ease can return. Yesterday my blood test results indicated that my blood count was too low to have chemo. Early this morning I returned for another blood test and had my time with the doctor who said all was well on examination although the blood results were still not in yet. Waiting. Waiting. Waiting. Waiting. Just got the call that one important aspect of the white blood count is too low and I must wait until Friday.

What is hard, is that there is nothing I can actively do to generate my white blood cells - and that I have carefully organized meetings, work etc. around my chemo date! Ahhh, the best laid plans, and all that. There is also the girding up for the vein searching, all levels of preparation for the chemo event. The doctor said that it is quite usual as one gets further into the chemotherapy, for the body to take longer to generate white blood cells. Meanwhile I continue feeling strong and active - and that is a very very good thing. And...

I asked Steve to take a picture of the strange combination of objects on my bedside table. I love the cute purple duckie with the horns, given to me by Natalie B after she heard the song 'Start Wearing Purple' on the birthday montage that Steve made. The 'momiji' doll/figurine is from Deborah and it's laughing - and the box says: "How do you be so funny? I don't know where it comes from but it is always making me laughing." And this little momiji also likes 'integral calculus and treasure hunts'! Talia gifted me with various crystals and semi precious stones - these were carefully chosen at the time of my hysterectomy and later. Each stone has special healing properties. and then the books and, and, and,..

It is altogether a weird and happy combination on my table that gives me pleasure.

Appointments are re-arranged and I trust that I will feel well enough to fly to Johannesburg on Sunday for another good day with my Thinking Environment work.

I give a big outbreath and thank you all for being so present for me. I do now feel lighter and the frustration is dissipating .. ease is returning. All is well. I am appreciating the specificity of care from the oncology unit and their refusal to bend the protocol.

new thoughts

2009-12-08T10:36:00.004+02:00

Tomorrow is chemo no. 5 - if my blood count is good. I hope it is. My body is strong and getting fit, my muscles slowly regaining their tone. Sometimes this thought flashes by: "If my body is so resilient and strong, maybe the cancer cells are too". As I said, it just flashes by.

My work in Johannesburg and Pretoria last week went very well. Once a 'container' is set, an ethos of respect is engendered - and genuinely agreed to - people willingly show themselves, their stories, their best thinking and naturally appreciate one another. For me, as facilitator, this is real 'food' - of a certain kind. It lifts my heart and deepens my belief that human beings are indeed worthy and courageous. Excellent and meaningful conversations begin to happen.

At the end of the first day of that workshop, a Muslim woman came to speak to me, her head fully covered in her black headdress. She said that she wanted to show me something and took her head covering off. Her thick' curly shoulder length hair freely tumbled out, and she said: "Five years ago - I was just like you, I had lost all my hair, my eyebrows and my lashes. I wanted to show you how wonderfully it all grows back." A gift.

The challenge that I face, and that I have not written about, is learning how to care for and take responsibility for my mother who is walking the road of increasing dementia. Many of you know that the challenge of this relationship has always been there for me, but now compounded by the increased involvement that I must have in her life. I choose not to write about this, for reasons of privacy and respect. It remains though, a continuous lesson for me of learning ease in the midst of my old patterns of behaviour. Learning to let go - of frustrations and, and, and... This is definitely my arena most demanding of mindfulness and the continual requirement of my ability to let go.
Being bald is definitely noticeable! I am getting much better at walking around in public places and being more at ease in myself. But sometimes the looks - or the avoidance of looks - is weird. It is very different to be bald when you have eyelashes and eyebrows. Then a woman who is bald can be striking and quite handsome. But, no eyebrows or lashes makes me look a little like an alien - and a cancer patient. Yea for false eyelashes, that I am learning to put on with increasing skill. Another thing... Sneezing is weird. You know how the eyes shut automatically for a split second? Well with too much glue for the lashes - the eyelid sticks!! So many of these little aspects of this whole experience cause me to keep building resilience and confidence and add to the understanding of what is important and what is not.

Have had a fabulous week end. Very early morning walks on the beach and my first delicious swim of the season. Just glorious!

Please hold the thought of honey dripping into my veins tomorrow - an easy connection to the drip and a relaxing day on my Lazy-boy chair at the Oncology unit.

toward chemo 5

2009-12-01T10:00:00.003+02:00

It has been a blissful time with Deborah..
It is week 3 since my last chemo, I feel vigorous and strong and am preparing to go to Johannesburg today for some new work - a little unknown and challenging. I have discovered a new level of inner assurance with regard to my work. The last 3 months have provided me an entry way to a quality of confidence that has little to do with expertise or learning. The best way to describe it is to use the beautiful words of one my participants in a recent programme. When asked what she was assuming that enabled her to do something very challenging and high stakes, she said, after thinking quietly and deeply, "I am enough". That brought tears to my eyes and I have not forgotten it. I think that is the source of this assuranceI feel - a key assumption that provides a sense of ease and freedom. So, although I am full of anticipation about how this new workshop will turn out, my anxiety level is not at all what it used to be. Maybe I have at last accepted that my own centering will always support me in finding creative ways of holding dialogue space in which people can easily connect one with another.
Blessings to each one of you.

Hair Loan

2009-11-30T07:07:00.002+02:00

Darling Daughter Deborah departed for NYC, but not before sitting back-to-back and loaning her mother some hair momentarily. Yea! - Deb's plan is to come back to CT in February for a couple months. What a pleasure it was to have to her with us and to have her returning, if only for a while.

Meanwhile, personally, I prefer Maryse' clean-head look to the long brunette style. But that's me...

Celebrating Deborah!

2009-11-23T14:46:00.003+02:00

This has been a week of delight! Much entertaining in our cool and lush garden- friends, family, joyful ease and laughing conversations. I have 'come out' as a bald headed woman! Strange looks from some when walking in shopping centers and I am still surprised when I see myself in a mirror as I walk. But summer has really begun here and it is good to have a cool head!
Talia bought me some false eyelashes and we are learning to put them on.. Steve bravely attempted to paint on my eyebrows on Wednesday evening...

My hair and my eyes are two parts of me that I have always so loved, appreciated and enjoyed. It is a strengthening lesson to have them disappear. Although they will return - maybe in a different way - I do feel naked without them.
It was an easy post-chemo time... only fatigue and a strange taste in my mouth for a while. I am sure that being surrounded by complete family dislodged any other symptoms!
And now off to do some exciting Thinking Environment work with friend/colleagues. It is always such a supportive pleasure to work with others.

4th chemo done!

2009-11-20T09:26:00.002+02:00

Yes!! Only two more chemo sessions to go! And I am doing well.
It was very special to have Deborah with me for a few hours during Wednesday's chemo session.
I learned that chemo flowing through the veins damages them in some way and that makes it harder to locate a good one and to put up a drip. So, the nurses struggling to find my vein. To repeat, the nurses at the Oncology unit are really superb. After two tries, Nurse D said her policy was always to then ask another nurse to take over after a couple of attempts. That way, her own feeling of loss of confidence would not harm me! Another nurse took over and after some difficulty managed to get the drip up. I was very touched by this utmost care - created by the easy collaboration and support between nurses. No ego, just genuine care for the patient.
As I left, Nurse D offered me a great image to help me keep my veins clear. She said "Imagine light, golden honey flowing through your veins, easily." I love it.
The weather has changed and the sun and warmth are back in Cape Town - and Deborah is here to enjoy that too. Happy days.
As I write I feel the cloak of fatigue coming over me... Love to each one of you.

Notes from a couple days

2009-11-18T08:50:00.001+02:00

First and most important - huge happiness to have Deborah with us. We came home late last night, Talia was sleeping at our house, Deborah woke her up with a hug - and there we were all four of us happily in the lounge drinking hot chocolate after midnight! We have not been all four together for too long.

Early this morning I went to have my blood test. By 9:30 we were all at the oncologist - she had the blood test results in front of her. My blood count is one point too low to have chemo safely. It is ridiculous to feel disappointed not to be having chemo - but suddenly my carefully choreographed week of telecons etc must be shifted and some tension arises about being in good form for challenging work next week... discombobulating that is how it feels. However we looked at the pictures of the CT Scan - amazing to see the images via cross section,head on etc. And it is clear that the spots on the liver have diminished. Doctor examined me - all is well, I have put on weight. (I am not so happy about that but in the circumstances it is good and strengthening.)

A low blood count is known as 'paper toxicity' because the person cannot feel the difference and unless it is exceptionally low, everything feels fine. While dancing on Saturday night I felt so strong and energetic. O the very sly blood cells!

Now to the present moment which is Wednesday 8:35am - I have just returned from having another blood test and hope that this time I can have my chemo treatment! So in an hour I shall go to the oncology unit with my bag of goodies: laptop for some work, new Barbara Kingsolver novel (a perfect gift from Deborah) for relaxation, my Ipod for deeper meditative relaxation, some snacks and of course Sudoku! I will settle in to my comfortable chair and be thankful for the drip. Deborah will come and spend time with me too.

It has been wonderful to experience the depth of connection with Deborah and to explore our different experiences of the past few months. I begin to understand the eternal and inclusive thread of love. It has no sentimentality, it is of an entirely other order and is deeply satisfying. It is love that holds all manner of feelings such as fear, or grief, or loss, but is not those feelings. These intimate experiences and discoveries give me such joy.

Oh one more good thing: On Monday afternoon the oncologist phoned to tell me that the cancer marker blood test had come in and shows that there is a huge drop in score. This if wonderful news.

Have a happy day dear friends!

Lovely Monday, Without Horrid Chemicals Dripping Into Maryse

2009-11-17T13:57:00.002+02:00

Monday, no chemo. Maryse's blood count was very slightly low to have her chemo - just a couple percent too low. Probably due to her cold. Most likely tomorrow will be OK for horrid chemicals to be dripped into her veins. Timing becomes newly tricky when trying to schedule chemo, figuring for several days of fatigue and down-time, and then scheduling work. A couple days late in the chemo means, maybe, having to deal with ill effects during work time. Delicate balance now that little things have knock-on implications that were not apparent in the previous incarnation.

ON THE OTHER HAND... We spent the day with Darling Daughter Deborah (hereafter referred to as DDD) cruising around the Peninsula a little and a casual lunch in Hout Bay. A Gift of a day although disappointing to M. Me, I was happy to have both daughters under our roof, family together for the first time in a long time. Sitting around the coffee table eating tapas was pretty blissful.

We hope for chemo tomorrow.

Deborah is arriving tonight!

2009-11-15T11:01:00.002+02:00

My nose is still drippy and I feel so very well.
Last night was a particular joy dancing at Marian's birthday party.. a superb band with Rayelle creating magic on the violin,friends and a radiant sparkling Marian moving with free abandon..
While I danced I thought back to 6 or so weeks ago when Jen offered me that special chair dancing session. My body was just coming out of that major back pain and I had hardly any energy or stamina. Last night I so relished my energy, fluidity and 'fitness'! Magic.

My workshop in Johannesburg was hugely satisfying. I do understand the doctor saying that I need the energy for myself. However when doing work that I experience as the fulfillment of an aspect of my purpose, when I see people thrive as they enter the territory created by a genuine Thinking Environment, I experience such a rush of energy and delight that that must have productive and generative impact. Good and profound work was done by each person in the simplest most easeful manner. Living out one's purpose in the best possible way may or may not have anything to do with health or longevity.
Deborah arrives late tonight. What yummy anticipation.
Tomorrow I have an early morning blood test and trust that my blood count will be high enough to let me have my fourth chemo session. The week is open for resting and much much time with the gorgeous daughter. Delicious for all of us.
Last night I had intended to go to the party naked headed - but it was too too cold. When I got really heated up while dancing I just didn't have the guts to take my turban off! Maybe in another week? It is a strange paradox that though I do quite relish being the centre of attention, I am not ready to be so noticeable as a bald headed white woman!

It's Just a Runny Nose

2009-11-12T14:49:00.001+02:00

the conundrum (see post below)

2009-11-11T17:53:00.003+02:00

I flew to jo'burg today and was beginning to feel that delicate tickle in the back of the throat that heralds a dry sore throat, and my nose started literally dripping. Normally that would be 'so what' , take some Med lemon or influedo and carry on. But now circumstances are different, I have to take notice, I have to listen, get advice etc. First advice from my gorgeous gp - "go to bed and cancel work. You cannot afford to give the energy, you need it for yourself."
I listened - canceled my coaching appointment and went to bed. I phone Miriam and ask for a long distance attunement. We have an exquisite time of focus and stillness.
Cannot bear to cancel my programme tomorrow... phoned Steve - he wanted me to speak to the oncologist. I did. she says: "go to a doctor, be examined. Only the doctor can decide on examination if you need anti-biotics. Have a blood test."

I feel fine - just my nose is dripping but I begin to get concerned at the possibilities. Ray kindly takes me to his doctor. A welcoming gp of the family doctor variety, thorough, interested and conservative in the helpful way. I do not have a bacterial infection, I just have a drippy nose. Take Corenza C he says and let me know how you are when you finish your chemo sessions... .
The challenge in all of this is how to increase my own sensitivity to my body's state and needs, be cognizant that my desires to do what I want, have in the past, overridden my body's messages, listen to other people's expertise and still make up my own mind and think for myself. Especially when I feel so well and only intellectually know that actually there is quite a process going on in my body. And that this awesome body of mine does its work so brilliantly that I am not even aware of how hard it is working. It is quite confusing.
Currently - I am back in bed, Lali has made some delicious smelling chicken soup for supper, I will have a bath with Eucalyptus oil, an early night and happily step into my Foundation Course tomorrow! How good to be with my friends Ray and Lali where I am so very at home.

Just A Cold!? (see post above)

2009-11-11T17:42:00.004+02:00

Damn... I feel like a goddamn mother hen. Which I am, proudly, in some ways, but it was my mother who was the nag / worrywart, not me. Yeah, right.

So, Maryse has had a good report of her scan. Wonderful. Everything is on track. Wonderful! 06:30 off we go to the airport to drop off said wife for flight to Johannesburg and her Time To Think Foundation course (see plug). She is dropped off at the brand-spanking-new, state-of-the-art all bells-and-whistles Cape Town International Airport Departure drop-and-go. It is way impressive!

Then the woman calls me a couple hours later: "I have a cold", she says "it's really nothing, just a little head cold..." And I GO cold. Now usually, for a little sniffle we have our family nostrum - MedLemon! My favourite panacea - and this miracle is nothing more than vitamin C, menthol, caffeine and aspirin. I love that it makes NO claims as to fixing anything, but just makes the victim feel better. And so it does. Good for when you cannot afford down time for a cold. But that was then, and this is now.

Circumstances are now exceedingly different, and while Maryse says "sniffle", my oncology handbook says 'CHECK EVERY ILLNESS OUT IMMEDIATELY'. The immune system is highly compromised by chemotherapy which is hopefully, merrily killing off red cells, white cells, bone marrow cells, mucus producing cells, hair follicles with the goal of, also, hopefully, doing the same to the nasty fast-growing cancer cells. But then, the heroic white disease-fighting cells are in retreat and a cold can become a BIG deal. 'Super Mother Hen' goes into action. And after calls to GP and Oncologist to see what the course of action is, the advice is for Maryse to get to a GP in Johannesburg to be checked out, maybe do a blood count due to the upcoming chemotherapy number 4 on Monday coming.

Maryse takes advice :-) and goes to a GP who, after palpitation, says, "It's just a cold". Take some vitamin C...

I stand down, take off Super Mother Hen spandex outfit and go back to caramelizing onions for tonight's dinner with daughter Talia. The big Margarita helped though...

Giving thanks and moving right along...

2009-11-11T08:33:00.002+02:00

I have loved Steve's blog entries.. and yes this morning when I took that call from the Oncology unit my heart was nearly pumping outside of my chest! It was good to hear the news and experience the confirmation and reality of having felt good and strong in my body. I am just passed the half way mark of the process and it is well. It wasn't a 'whooopeeee' kind of response, just quiet delight that everything is working together and shifts are happening. I am continually fascinated by the difference between my internal experience and that of everyone around me. you definitely provide the high and enthusiastic energy that I may be too cautious to express myself.

The CT scan experience was easy - my personal inner reflections definitely eased my way so that I could treat the experience with fascination and interest. I hadn't realized that I was going to have a CT scan I had thought it was another ultrasound until I looked at the appointment schedule and realized that I had to go and collect something to drink before the procedure! did everything on time and was also surprised to learn that I would be given Iodine intravenously to enhance the pictures etc. I think I should be more curious than I am, it would prepare me better!
I am actually continuing this writing from the new, gorgeous and very 'grown up' Cape Town airport - yes I am on my way to Johannesburg to coach and then to give the two day Time to Think Foundation course. The last course I gave was in July before this whole adventure and I am curious to find out how my personal learnings will have influenced my teaching. And then it is just a couple more sleeps before Deborah arrives! I am so excited.

A GOOD REPORT!

2009-11-10T09:03:00.000+02:00

Maryse just answered the phone ringing an hour ago - heart beating - it was oncologist Dr. Jill on the line. The report is that the lesions on her liver have shrunk - not sure how much, but shrunk, and no evidence of cancer elsewhere!!

Not out of the woods, but sunlight shining delightfully through the trees. Celebration!

No news so far!

2009-11-09T16:34:00.002+02:00

FYI - Maryse had her CAT scan this morning, but we have not had results as of 5pm. Will post when we know more, probably tomorrow - Tuesday.

facing the scan

2009-11-08T22:07:00.001+02:00

thank you for the wonderful comments, texts and emails. They each find their exact place in my heart and make my spirit sing.

Many of you comment on what you perceive as my 'courage' in walking this cancer territory. I don't really have an experience of being courageous or brave. For me this is just walking straight ahead and I have not yet experienced fear or anxiety. Life has never let me down - no matter what the situation. And I assume that courage is needed when fear or anxiety come calling. These two feelings come in different moments when I am dealing in areas where I have no great expertise - for instance confrontation, or having to back out of an agreement or giving unpleasant feedback. My stomach knots up, I don't sleep and I really have to call on 'courage'.

So now I have been curious about the anxiety I mentioned in facing tomorrow's scan. It is the first time I am actually going toward information consciously. Up to now all information that I received about the cancer was unexpected and sudden. I suppose there was no opportunity for anxiety before.

Reflecting on this, I asked myself what it is that I want for tomorrow. The answer came fast: I want to feel at ease. When I surveyed the assumptions that were stopping me from feeling at ease, this is what came up: that I will get 'bad news'; that I will lose my centering. Oh that is what the anxiety is about:that I would lose my centering. Then I asked myself if I thought it true that I would lose my centering and this wonderful rush of assurance arrived - I breathed out a long breath. Of course not. Being gently centered is part of who I am. I deeply know that. so my incisive question to myself is clear: If I knew that being gently centered is part of who I am, how will I feel .. (tomorrow in having the scan....) ? Gentle assurance has returned - no matter what information the scan shows up. Information is neither good nor bad - but always helpful in facing reality as it is.

Upcoming scan

2009-11-06T09:16:00.000+02:00

So, we're in the normalish round of things, work, setting up things, garden, house, mother-in-law, repairs, the bank, maintaining things and maintain self - the usual round of stuff. It feels normal to me, with excitement raising around Deborah's time home for 2 short weeks from NYC. It is time for the firstborn daughter to be at home and get some sunshine and parental enfoldment. Trusting that spring has sprung, mostly ( except today) but then it's Cape Town and so hot-cold-hot-windy-exquisite is normalish too.

And upcoming this week is the scan to see what effect chemo has had on the cancer on Maryse' liver. I am anxious, although she is robust and energised and normal - and I fully expect the best possible report from that scan. I keep telling myself that. At the same time my shunned superstitious rabbitfoot rubbing imp rears it's head. Almost like the old children's doggerel about 'step on a crack, break your mother's back' - although admittedly, sometimes I deliberately stepped on the cracks. Superstition comes knocking when external events seem to be out of my control. Even though most experience is largely out of, at least MY, control. Surely there is some action I can take to ensure a 'good' outcomes. Probably the best that can be done is to stay awake, care for the details, and breath out. Breath out. Breath out. Gotta breath in sometime though...

a harder week

2009-11-01T12:22:00.002+02:00

This morning was one of those days when my gratitude for living in Cape Town just bursts wide open. Steve and I have just returned from a walk in Clifton/Camps Bay .. the Atlantic a magnificent turquoise, the sun warm, the breeze just right and early enough that there were not too many people about. Beauty all around. A luscious breakfast on the sea front and a gentle return saunter, followed by the magnificent drive home along the Twelve Apostle mountains and through Hout Bay. Divine! Sorry for those of you in the winter hemisphere.. come here!
This chemo week has been the hardest so far. Although the fatigue was not as intense, I experienced a low level debilitation in different ways. It may be the cumulative effect of the chemo, but my energy did not return with as much abundance as in the previous two sessions. I seem to go more into myself when I experience this, in a retreating kind of way. Mindfulness meditation and attunement have been stabilizing forces.

Tomorrow I travel to Johannesburg for two days and I trust that my energy will support me well. I am not facilitating but rather assisting a client in some redesign of a process that we will deliver in December. It will be stimulating, challenging and fun.
Yesterday was a beautiful day and I decided to begin the process of tanning my naked head. So armed with sun cream factor 60 (!)slathered on my head I sat at the pool for a while enjoying the direct warmth and imagining a perfect light tan the colour of my face. Nothing happened! is 60 too high? I am definitely getting ready to bare all in public but a white white head - that is not cool! And my poor eyebrows .. they have half disappeared.. I have short ones now. Later today Talia is going to teach me how to paint good eye brows on so that I don't look surprised or maybe angry by just drawing them on willy nilly! Oh vanity.
That is all for today - I have to prepare for my Joburg stint.

directly from the IV...

2009-10-27T09:42:00.004+02:00

I am sitting in my comfortable chair in the oncology unit all hooked up to my various liquid formulae. It is very quiet and still. We are only 3 patients here today, the radio is quietly on KFM Radio - quite jolly, soon I will put on my iPod so I can listen to what I choose. This morning, very early, I had my blood test - it was the first time the nurse wasn't immediately successful in finding the vein, so we had to try again... not too bad. After blood test gym was my next stop. The circuit at Curves was nearly full with women doing what they call 'boot camp', with a very lively atmosphere and broad diversity of shapes - and effort! It was a good way to begin my day before chemo.

You guys are so amazing, thanks for all the text messages of 'being with me' as I enter my 3rd treatment. My blood tests were all good. I have an appointment to have a scan in 3 weeks. That thought caused some adrenalin to move through me... yeah, a little dash of anxiety. Steve said maybe they will find the liver completely clear. That too is odd to contemplate. Weird how quickly I take on a pattern, a routine and an identity so that the idea of change is anxiety provoking? So many wake up calls about the deep subtle patterns of unconscious conditioning regarding what I take on and call my own.

Tuesday now: The chemo session was the first one that caused some discomfort. I had the IV in my right hand as my left one still had bruising and some swelling from the last two chemo sessions. And during treatment my hand kept burning every so often - because of what was coming through it. I kept it on a hot pad - warmth helps - but mostly I very gently caressed it and reminded my body that this was a choice I made and all was well. That soothed it instantly for the time. I meditated and slept - and was too woozy to concentrate on my novel (the wonderful third and final book of the trilogy: The Girl who Kicked the Hornet's Nest). I was wiped by the time I came home.. that thing I call the 'Grand Fatigue', when all my energy has leaked out and I lie, like a lump, on the couch unable to hold a conversation.

Had a good sleep, and here I am back - not energetic enough to go to gym but certainly here! Yay!
It is just over two months since I had the hysterectomy and discovered the cancer. Just about nine weeks of extraordinary shift, learning and blessing. I am so grateful to have walked this road and to be walking it now. It is a rich pathway.

ChemoDay

2009-10-26T16:03:00.001+02:00

I am just posting this, from when I went to visit Maryse midway through her treatment. Today's session was shorter as she has become used to the intensity of the chemicals being dripped in. I have now just brought her how - tired, but good. No doubt she will add something quite soon, but right now rest will be good. Three chemo sessions down, three to go.

chemo 3 coming up

2009-10-24T08:26:00.047+02:00

It has been a wonderful week - starting with the last weekend at Stanford Valley (that Steve wrote about) made me so happy. I love being with our ever-deepening community of friends and also being on the land itself, planting all those tiny lavender seedlings.... Grow plants, Grow!

Saturday morning: I returned home late last night after my first real full-day of facilitation in Durban with a small executive group, a number of whom I had worked with before. My very favourite work - taking them through the meeting structure of the Thinking Environment.

I am learning how to tell people about the scarf on my head in such a way that the cancer is not a distraction, the information is shared - and then we move on. But because it is 'in the room with us' it serves to open doors - and this dismantles some strong conditioned responses to this stolid structure in their consciousness.

It was a stimulating and fascinating day. The delegates responsiveness generated some fascinating new thinking on their agenda topics. Best of all, for me, was that my energy was high throughout. This invites people into 'life-giving' ways of interaction with one another. Seeing them implement what they are practicing is a huge energizer for me!

I want you to know that I am feeling very well and been to gym a few times lately. The increase in my energy and stamina is visible and palpable. My body feels light and increasingly flex-imble. (You can guess what that means!) When I looked around at the other women working out, I was the only one with a turban on. My headgear reminds me that I have no hair on my head, and that there is cancer in my body. Am I ill though? Is this being ill?

Odd how we adapt to this normalcy. My diary is beginning to fill up with activities for the weeks between chemo. Every morning I take my variety of pills and supliments. This morning I shaved my head again because the growth of some hair is really scratchy and irritating when going to sleep. Nevertheless I sleep very well and wake up happy. My appetite is pretty good, so thankfully Steve is no longer overtly checking on my eating habits and fussing. In between, there are the visits to the acupuncturist, the nearly daily attunements, attempting to do daily meditation and exercise. It is a busy life.

Monday is my third chemo session - and that means I am half way through the treatment. We don't have any substantial results about the impact of the chemo on the cancer in my liver. I just know that I do feel fine. However, I felt fine until July and realize that there is much happening below the level of my awareness.

I wanted to share with you some thoughts I have had about friends. I am one of those privileged people who has many lifelong friends - some from age 7! There is a very particular pleasure to that that goes beyond shared memories and stories. There is the sense of deeply knowing each other and the sense of pride in the other's accomplishments and wisdom, the assurance of proven love and safety. The assurance of truth. Then there is the magic of the many friendships that are just a few years old and the wonder at the depth of connection, deep affection and honour generated over such a short time. It is genuinely about finding one's tribe or clan and entering into the the space of common purpose which is colourful with variety and contrast brought by each individual.

There is quote from Gandhi that I think really puts the importance of friendship right where it belongs:

"With every true friendship we build more firmly the foundations on which the peace of the whole world rests."

Friends speak what is true and see what is right in one another. And it is not about how many friends one counts but about the truth of the friendships we have. I love the image of generating peace through the journey of genuine friendship. here is another aspect to friendship which is described in this anonymous quote:

" A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words"

And people do that reminding in the most unique and amazing ways. I see the webs of friendship around me and I am awed by the design. Connectivity is instantaneous and comes in the moment, whether that person is close by and seen every day or hardly ever, and a couple words come on an email or a link to pictures that give pleasure and delight. I write about this because I think it is one of the most powerful dimensions of my experience and it has much to do with the lightheartedness and energy that I express.

Today Is A Placeholder

2009-10-20T14:12:00.004+02:00

What? Well, several have asked, "What is happening"? And the
answer is, not much - in a good way.

We have had a wonderful, relaxed, weekend with the Stanfordian clan. Lots of laughter, a smidge of deep conversation, Valerie's World Premier of the video teaser for a potential TV series on Cape Town waterways. Very jolly and interesting. And we did some cooking together, made a little loaves-and-fishes magic (with snoek) Put together a floating jetty, after a few years of planning it, so that we can enjoy the dam even more. And there was lavender planting for our anticipated bountiful crop for distilling into essential oils.

So, it was happy, normal,good. Maryse has been engaged in her work this week before going back into the unknown of chemo 'Number 3' on Monday. So, on we cruise, with a little help from our friends.

Normal For Now

2009-10-14T14:23:00.000+02:00

I am really enjoying the normalcy of today and the past little while. The wonderful wave of friends is now an ebb and flow... Maryse only had a day of fatigue after the chemo and then bounced back amazingly and is, at the moment of writing at the gym. Which by the way turns out to be great for those on chemo according to WebMd, the excellent source of reliable health related info.

My anxiety is now at a manageably lower level, coming back in waves sometimes. So for now the sun is shining and all is quite well. Except maybe for my midnight confrontation with a very loud obnoxious neighbour - we got a bit heated. But probably it was good for my circulation, all the heart pumping that is.

The week of chemo 2

2009-10-11T14:03:00.005+02:00

It was indeed a good week. Steve mentioned in a previous entry how I followed the same pattern of response to chemo as I did on the very first one. The fatigue, which came in on the second day after the chemo, was substantial but not as 'grand' and my energy returned gently and happily. Consistent attunements, given with such boundlessness by Miriam Platt and Howard Goodman keep the energy of love at its most focused - and seem to recalibrate my whole being. The most difficult part of this week is not wanting to eat nor drink - and I must. Steve lurks around me to see what I ingest and keeps plying me with new concoctions to nourish, give energy and keep my weight up.

I had to re-shave my head yesterday. And, yes, some hair is still growing, but in patches. I have begun to enjoy the sensation of touching this bald pate... things just change and change and change. I haven't yet had the courage to go out into the world without a head covering. I think it is about not wanting to stand out so boldly. Maybe in summer, when my poor head is just too sweltering under the various scarves and turbans, I will be weather compelled to go uncovered.

Serena, my beloved wise and fun elder sent me the following quote from Dr. Andrew Weil:

"Although there is no one state of mind that correlates exactly with activation of the healing system, a consistent theme in the interviews is acceptance of illness rather than struggle. Acceptance of illness is often a part of a larger acceptance of self that represents a significant mental shift, a shift that can initiate transformation of personality and with it the healing of disease... most people do not go through life in an accepting mode. Instead they are in a state of perpetual confrontation, trying by imposition of will to shape events and control situations... acceptance, submission, surrender - whatever one chooses to call it, this mental shift may be the master key that unlocks healing."

I realize that acceptance is a life long work and there are many levels to it in a single moment. I think that a couple weeks ago when my body froze up and was so stiff and painful was evidence of my lack of acceptance at deeper levels. Fear and anxiety causing everything in me to go into narrow survival mode. Acceptance seems to be a continual internal conversation that demands of me a depth of listening that is quite new. It is listening to the voices of non-acceptance, so that they can have the relief of being heard and so let go. This morning Steve and I went on our first walk on the beautiful green belt in Constantia. I started out with vigour and delight. Walks in places of ever-changing beauty are wonderful for quiet and for good conversation. And it was so. We were only a third of the way into the walk when I began to hear the internal messages of 'Enough - Energy drop!' My practice for today was accepting the truth that my body was speaking. Letting go my ambition to show how energetic and well I am, and to accept the current energy state with grace and support. We turned around and headed back.

This week I begin to work again! It feels like a celebration. I will note carefully how my energy ebbs and rises. I have made arrangements to be shuttled everywhere and the work is the love of my heart, mostly the Thinking Environment. This time of working with cancer has made me acutely aware of the absolute necessity of going towards what I love, what generates energy and what I can realistically handle well. So I have decided to to decline work that generates high anxiety or that doesn't feel like mine to do. I am learning to say no. This is not easy for me, and it brings up all sorts of worm-like assumptions about 'letting people down', etc. Maybe part of my feeling of lightheartedness is because I am dismantling a few of my old stuck patterns, and so there is more life flow. My present situation enables changes to happen far more easily.

Note: To my kind friends who text me such loving messages, but don't sign their names - PLEASE SIGN YOUR NAME! My dear phone is erratic in showing callers, and texters, names, so I am left wondering who you are!

Thank you, each one, for the consistent and loving connection that nourishes me so deeply.

Positive Energy

2009-10-07T08:52:00.002+02:00

Sister Claudia sent some positive energy (left), so I thought I'd pass it along!
It seems to be working - so far ill effects of Monday's chemo have not shown up, as yet. We are waiting and watching. Last time it was 2 days after chemo that Maryse got so fatigued. Who knows?

Update 2 hours later... Fatigue hits. Almost exactly to the hour as it did 3 weeks ago. I guess the chemo has a particular route through the body.

While in chemo...

2009-10-06T11:04:00.016+02:00

I have so much to say this may take a few blog entries.

I have started this blog in the chemotherapy room while hooked into my IV, once again gratefully welcoming the chemicals. Although busy, it is quiet, with an easeful atmosphere as the nurses move about efficiently but at a relaxed pace. Thank you all for the messages of support for this day.

I will recapitulate the few last days because they have been so full and special. This last week my energy returned to almost vigour and my body has been so much more supple, and my heart high on celebration for my 60th - and general good feelings!

Hair loss has been an adventure of a very particular kind...
Day after day, more and more hair fell out. By Friday night it was clear that is was my last night with hair - very thin hair, granted, but still, it did completely cover my head. Waking up on my birthday, on Saturday, the pillow and bed was full of hair and when I showered masses more fell out! We had to rake it out of the shower so that it didn't clog the drain! By then I was really looking quite ratty... and couldn't wait for Talia to arrive, to shave my head at her very sweet, and professional hand.. She is such a professional. Draping the black hairdresser's cape around me she began to shave her mother's head. We were on the front stoep on a most exquisite warm sunny Cape day. On and on she shaved. Steve, as usual, took pics through it all. At one point Talia left my top hair on as a very pathetic punkish Mohawk! She called it a 'faux-hawk'! When I finally looked in the mirror, I thought "Hey, my head shape is quite good"! Though I must admit that touching my newly-birthed white, white scalp gave me the absolute 'ggrills'!! (Note: a South African word, where the g is pronounced ggghhh, (Steve says like when you try to get the mucus from the back of your throat)) and it means feeling yucky all-over) Talia said that shaving my head was quite a difficult experience for her - I didn't get this until she told me.

It was a good day of visits, sunshine, presents and gently getting myself and the house ready to receive a few friends to celebrate my birthday. This turned out to be one of, if not THE best birthday celebrations I have ever had! I was happy, happy, happy. I received exquisite words of deep appreciation from friends and Jonathan Rands read a poem that he had written for me, on my card. I include it below because it comes from the purest heart and finds its mark like a true, loving arrow.

To Maryse on your 60th birthday

From a distance first

a little way

afraid in fact

of a soul so fine

so full of all that's right

a light that shines the way

for all who yearn to see beyond

the snags and coruscations of an ordinary life.

and so with anxious heart

I moved towards

your huge embrace

to be graced and held

by life itself

and glad I am and proud

to stand beside you

with you now

amidst a privilege of friends

Maryse, we hold you

as you hold us

strengthen you

as you strengthen us

love you, love you. love you

as you love us.

Is that not beautiful?

And then, in another moment of beauty, lightheartedness and fun, everyone sang ''With a Little Help From My Friends' alternative lyrics brilliantly re-written for the occasion by Judith Wurtzel. She handed out the song sheets and everybody sang! It was a magical and very funny experience - and true. I spoke a little and even took my scarf off and flashed my naked head for all to see. It was so helpful to be seen by friends with eyes of love that see beauty regardless! A later highlight was Lerato MMutle giving me her and Dan Goodman's birthday present - a striking and handsome fabric cut to be used as head gear - she placed and arranged it on my head as a demonstration - I felt as if I was being crowned!

It was a divine evening of generosity, friendship and laughter. I am learning to receive - and it is as if a greater receiving space has opened up within me. When the gorgeous Doug Heel was here he taught me to breathe really deeply with my belly. He pointed out how I breathe in a generally small amounts yet I have a long, long out-breath. What was the implication of that? He pointed out that I need to take in more air with joy and eagerness. I think this may have something to do with creating a larger capacity to receive without embarrassment.

I am writing this on Tuesday - the chemotherapy yesterday went well and I am feeling really good today. I am anticipating deep fatigue, but somehow when you know what to anticipate, it makes things easier. There is much more to say but it will have to wait. Just one thing: Last Friday night Steve and I were privileged to go to St. George's Cathedral in Cape Town to listen to Toumani Diabate the Malian kora master musician. His music was transcendent. 21 strings weaving sounds of soaring beauty and power.. Through it all as my tears came, I kept hearing amongst the notes: "All is very good. ALL is very good. All IS very good, All is very GOOD" And this has stayed with me ever since.

Chemo 2

2009-10-05T11:11:00.001+02:00

It was a great weekend, M's 60th, plus beloved alt-daughter Tamryn's 30th. Celebrating the generations.

Maryse, now bald and getting into tying ornate turbans, was impatient to get going this morning. But strange feeling for me to drop her off at the oncology clinic, like dropping her shopping or at the airport. "See ya later", as they inject the drug to relax her before starting to drip heavy metals into her system for six hours. Odd.

We are told that side-effects wary and are unpredictable. Better, worse, nausea, no nausea, other stuff... Back into the vast unknown Maryse and I go. AND, life goes on. I am still cleaning up after our little, so-called intimate 'come for drinks' evnt turned into a major party. NOT intended to scale up like that, but wonderful with heartfelt birthday tributes from friends. Thanks.

Maryse's Purple-ish 60th Birthday

2009-10-02T23:41:00.000+02:00

Who'd have thunk it? Here we are, up to the eyeballs in so much intensity, and the birthdays keep coming, Yea! Sixty is a fine birthday to celebrate as we hit our stride, cancer and all. I am going to get old with this woman (though not too old too soon, if you know what I mean) that was my committment, and I mean to hold her to it. so if you wish to read and view further, there follows a poem, a video and the lyrics to a video. Yes?

Click HERE for my birthday card to my beloved bald woman
Marryse loves this poem: 'When I am an old woman, I shall wear purple'

When I am an old woman, I shall wear purple

with a red hat that doesn't go, and doesn't suit me.

And I shall spend my pension on brandy and summer gloves

and satin candles, and say we've no money for butter.

I shall sit down on the pavement when I am tired

and gobble up samples in shops and press alarm bells

and run my stick along the public railings

and make up for the sobriety of my youth.

I shall go out in my slippers in the rain

and pick the flowers in other people's gardens

and learn to spit.

You can wear terrible shirts and grow more fat

and eat three pounds of sausages at a go

or only bread and pickles for a week

and hoard pens and pencils and beer nuts and things in boxes.

But now we must have clothes that keep us dry

and pay our rent and not swear in the street

and set a good example for the children.

We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?

So people who know me are not too shocked and surprised

When suddenly I am old, and start to wear purple.

- Penny Joseph -

And the video soundtrack is from Gogol Bordello's song, 'Start Wearing Purple'

Start wearing purple wearing purple
Start wearing purple for me now
All your sanity and wits they will all vanish
I promise, it's just a matter of time...

So yeah, ha

Start wearing purple wearing purple (he)
Start wearing purple for me now
All your sanity and wits they will all vanish
I promise, it's just a matter of time...

I know you since you where at twenty, and I was twenty,
but thought that some years from now
a purple little little lady would be perfect
for dirty old and useless clown...

So yeah, ha

Start wearing purple wearing purple
Start wearing purple for me now
All your sanity and wits they will all vanish
I promise, it's just a matter of time...

So yeah, I know it all from Diogenes to the Foucault (these are philosophers!!)
from Lozgechkin to Passepartout
I ja kljanus obossav dva paltza - chto ty!
shto muzyka poshla ot "zvukov moo"

Start wearing purple wearing purple (da da da da da)
Start wearing purple for me now

Start wearing purple for me now!

All your sanity and wits they will all vanish
I promise, it's just a matter of time...

So Vio-Vio-Violetta! Etta! Va-va-va-vaja dama ti moja!
Eh podayte nam karetu, vot etu, i mi poedem k ebenjam!

So yeah, ah start wearing purple wearing purple
Start wearing purple for me now
All your sanity and wits, they will all vanish
I promise, it's just a matter of time!...

EEEK! The hair is falling out!

2009-10-01T10:08:00.003+02:00

Yes, the hair is falling out - I started noticing it on Monday night, told Steve - and his face lightened up immediately! He said that he had a sense of relief that the chemo is working! Actually, it does feel like everything is going according to plan - except my timing is out by a couple of days! I have not yet learned to tie attractive head scarves in imaginative ways and Talia was going to shave my head on Saturday... can I wait? Emergency turban tying lessons needed.

A big piece of our experience these days is the realization of how totally different Steve and my pathways of experience are. There are lots of bridges between the roads but they remain essentially different. Our cousin Janine, who has walked the path of care-er some time ago, was wisely describing to me how it may seem as if there is a third party in the marriage. And, how it is necessary to be true and delicate at the same time, understanding just how much we actually cannot understand each other's experiences. I see this as one of the biggest learnings before me.The question is: How to generate and sustain intimacy across the bridges? How to know what is to be shared with one's partner and what needs sharing outside of that particular container?
Inviting one another to think aloud freely, and to listen appreciatively, with no comment is a good bridge builder. We do that on occasion.
Every day I enter territories that are new and invite presence and imagination.
I am walking toward 60 with genuine gladness in my heart - truly! I am so excited to celebrate being born and the richness and abundance of my life. Yippeeee!

a little thinking, a little dancing

2009-09-28T16:02:00.006+02:00

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.

Yesterday, our good friend and dance teacher extraordinaire, Jenny van Pappendorp, gave me the gift of a Chair Dancing lesson! For an hour, sitting opposite each other, she led me in stretches, and then dancing, mirror dancing and witnessing each other improvise..... all to beautiful music. I was transported with delight at the reconnection with the natural joy that my body experiences when it moves, dances and creates in space. Jenny created a container of such safety that enabled intimacy and freedom.... a gift indeed.

I am learning to befriend fatigue.

I am still surprised when I feel tired and have to remember that my body is really working very hard all the time - manufacturing blood cells, marrow etc, and that that takes a lot of energy. I forget.

I have received profoundly beautiful emails from a number of you. Thank you. I have been thinking about what some say about their experience of entering my world and also that I have permission to be sad, angry etc. I find it hugely helpful to welcome you into my world, it is useful for me to articulate aspects of it. The helpful part of this blog is that I can be as truthful as I know how. I also know what I will NOT be writing about, such as traumatic constipation and other more private difficulties! (someone dared me to write about the constipation! Don't worry - this is as far as I go on that topic.) This part of my life is a huge practice-time of living out assumptions that I hold to be true. The largest one of these is : 'All is Well' - and equally I hold that I can feel sad - and all is well, and I can feel anxious - and all is well ... and on and on. This is hugely important to me. What I so love in your comments is the spirit of that same attitude: "All is well".

My dancing body is back again!

2009-09-25T08:49:00.058+02:00

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.

And as they say on TV, "But that is not all..." Last night we Skyped Deborah and she told us that she is arriving in Cape Town November 15 - Her generous bosses bought her a ticket! What a wonderful way to show how they value and appreciate her to have done such a generous thing. And of course and they have gifted US immensely.

It is with this sense of delight that I am moving toward 60! I have not decided whether I am going to shave my head then or wait a little more. I am enjoying this haircut and look. I hope that I will enjoy the bald look as much.

When I was 24 and living at our first communal home called Twin Valleys, I learned about the power of genuine thankfulness. I remember that I decided to try that attitude and see how it worked. It has remained a core part of the way that I choose to live. It is easy to express gratitude for the gifts that come, like the ones I describe above.But to practice thankfulness as a way of being, builds core strength of a whole different nature. I am thankful because I am here. That is good.

An Ordinary Day

2009-09-22T17:58:00.002+02:00

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.

And then, there is that 'C' shadow. Spent an hour putting up a spreadsheet to track Maryse reaction / response to chemo, blood count table, food intake, symptoms (if any) complimentary potions that she is taking (finding links to any verifiable research on those potions - if any), finding a physiotherapist to work with her on her back pain... stuff I have not had to think about before, or worry about before.

An ordinary day. A good day - but with a shadow. But ordinary is good. Someone is sure to remind me "One day at a time" - So before you do... I got it.

The Energy Returns

2009-09-21T09:09:00.007+02:00

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,
I am experiencing energy returning like a flow. My voice picks up its strength, I actually feel that my eyes have regain some sparkle, I even hum! Thank you to Phil, the gentle acupuncturist, who this morning who released my frozen back muscles and opened up the gateways of my energy.

Two Days later: If you have read this far down I have to tell you that it is now Sunday! My Friday energy enabled us to go to our family for a Rosh Hashanah dinner that was extraordinary in its creativity and generosity – a wonderful start to a happy 5770! I stayed until the soup course… and was so happy to be surrounded by up-beat and wonderfully warm-hearted family.

Physically, what is consistent and persistent, and what could get me to whine and whine, is my frozen lower-back... So uncomfortable walking, sitting, lying… This week I will definitely do something more active to release it. I am so unused to the experience of being stiff, unfit, etc. It is like inhabiting a foreign body.

I look forward to these next two weeks in anticipation of strength returning and getting ready for chemo session number 2 on October 5. I have not experienced any boredom yet this whole month, but I am thinking of projects that will both engage and stimulate me at the times I am not out-and-about. Any ideas? (Just kidding!)

18th September

2009-09-18T11:27:00.001+02:00

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!

It was another quite good night. This morning Maryse coached one of her clients by phone and now we are off to the acupuncturist for a pointed session.

All things being equal, and if energy allows, we will join family tonight for Rosh Hashana, at least for a while.Or not, depending. That's how it is going at the moment... check the battery level before we push play.

(AND, Happy New Year to those in that loop)

Two Days After Chemo

2009-09-16T15:57:00.001+02:00

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.

I've been out doing the new style shopping; Sprouts, sunflower seeds for roasting, carrots and beets and apples for juicing, and so forth. Not my usual shopping. Had a ver confusing time trying to figure out which protein supplement to get. Should it be the generic one from Pick 'n Pay, costing R50, or one of the much more nicely labeled ones from the healthfood store, costing 10 - 20 times the price at the one at the supermarket. Is there really a difference? I called the oncology clinic to see what they thought, and their advice was not to waste money, just get a supplement. Just do the job.

This exercise was befuddling, with no way to support the very vibrant claims on product at the health food store, except by their own marketing testimonials. Are these claims made by 'natural' manufactures more reliable, or essentially different, than the mainstream companies? Should I feel more confident because they say so? I never used to ask the questions, and always accept things because they are labeled organic, natural, herbal as the better choice. Back along the way I assumed that is was. Is that a good assumption?

Anyway, I am having a pretty good birthday, given the circumstances, and happy that it is low key. Good sms's and calls from so many. With Maryse's 60th coming up on the 3rd of October, maybe we will celebrate together later in the year and have our 120th (60+60).

Chemo 101

2009-09-15T11:19:00.010+02:00

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 wrote emails, read, had a couple gentle friends visit, listened to my mindfulness meditation, music , and slept. Next to me was a very upbeat woman knitting away, telling me how she appreciated her chemo days, since she had decided that these are the days she does what relaxes and delights her.

I did the blessing of every drop as it gently came into my body .....the atmosphere of ease and sweetness in the oncology room was so helpful.

On my return home Miriam Platt came and gave me an exquisite attunement that took me to the deepest place ... and also accessed the profound tiredness that I was feeling. It was good to take all the time I needed to very slowly return back to being awake again.

Our evening was gentle, sleeping now and again while watching TV and giggling at the outrageous Cathering Tate.

I went to sleep wondering how my night would be. Guess what...? it was the best night's sleep I have had in ages, and slept right through, awoke with utter delighted surprise! What a huge difference it makes. Now here I am, writing to you, feeling good -and also curious about what is to come in the line of side effects.

Letting go remains a constant lesson - letting go hair, letting go work (more requests came in today: I have to do an imaginary dance of delight then stop and think clearly about what is realistic, keeping myself in prime position, then decide and answer - not as easy as it sounds) and one of the tough ones - letting go of feeling energetic and vigorous.

Here is a poem many, many of you know. I first came across it in 1990 and fell in love with it. Its lines keep coming up for me these days, so I wanted to offer it. Good poetry seems to sound the truth into the world and is timeless. This is by Dawna Markova:

I will not die an unlived life.
I will not live in fear
Of falling or catching fire.
I choose to inhabit my days,
To allow my living to open me,
To make me less afraid, more accessible,
To loosen my heart
Until it becomes a wing,
A torch, a promise.
I choose to risk my significance;
To live so that which came to me as seed
Goes to the next as blossom,
And that which comes to me as blossom,
Goes on as fruit.

Thank you everyone for everything you are doing, so brilliantly, in myriad ways to keep the love container around me complete and spacious.

Back to home

2009-09-14T17:09:00.001+02:00

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.

AND the cancer patient instruction manual - What to do in case of the umpteen situations and reactions, who to call, when. Daunting. It's going to need study on my part to get when to take action and when not to. I've just stocked up on anti-nausea meds, and ginger, both root and capsules. I also understand that the 'cocktail' has some cortisone, so sleeping may be difficult - and so on.

I'm feeling a little lighter given the way she went through the first session, so far. The double whiskey I have in my hand is also helping somewhat. Purely medicinal of course.

Bottom line: So far, so good. More tomorrow.

Hard

2009-09-14T13:50:00.001+02:00

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...

I had a great reminder from Maureen Thelland, our pal, who has experience in the ways of partnering a loved one with cancer. She said that when she was attending her partner that they chose to bless that clear liquid as it drips into the veins so that the process became sacred and something to be thankful for.

I hope to maintain thankfulness for this process and all who support it.

Anyway, so far so good. When I popped into the unit at 12:00, Maryse was doing OK, though the arm with the drip was sore. I will update an a few hours when I bring her home.

the day before first chemo experience

2009-09-13T11:18:00.010+02:00

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.

People have been asking me about my feelings. Fear is not one them. What does come frequently in waves of different intensity is sadness. Sadness that wells up from deep deep down and is mostly to do with possible future loss. Images of thing I want to yet experience.... so I cry and that feels good. Crying is not something I do easily (I cry at beauty or when I am deeply moved) for myself and I have wanted to open that gateway for a long time! It is opening.

Letting go - that has been the tough lesson. Especially letting go of work that I love and the joy that it brings. I can't even describe the sensation of letting it go with a blessing. Very hard - had to keep remembering the key I was told long long ago - 'in giving all, nothing is lost'. I have been repeating that to myself a lot! I am so glad that there is work that I will be returning to later in October as I figure out how I respond to the chemo and how I use the days in between intelligently.

Most of all though this is an extraordinary time of testing out what I know and have believed for so long. And the wonder is, that it works... There is always, always opportunity to open up, to give gratitude, and let go my various screw-ups.

I have had some wondrous visits this week, where I sort of test my new thoughts with friends who listen so exquisitely - and ask good straight questions. Thank you. Please keep your emails coming - I relish them.

It is my beloved husband's birthday on Wednesday - he is 60! I have been held in his utter loving respect and care for a long long long time. His zany humour and quirky way of seeing make me laugh and teach me to go outside of my usual pathways. He is spontaneously and utterly generous, and has a capacity for loving that is unmatched. I love his way of being fearlessly straight about what he thinks especially when it goes contrary to the current! I am writing about him today because I have no idea how I will feel on his birthday ... His care and protection for me in this time enables me to explore and experiment and be me.

I will be back with you all soon soon.

An afternoon at the hairdresser.

2009-09-10T23:33:00.002+02:00

Well. what to do? Should she wait for the hair to fall into pillow from the chemo? Rather, 'head them off at the pass'... Off we rode to the legendary Peter The Haircutter - a man with some really creative chops, so to speak. (BTW: This is NOT an ad for Peter - because as I understand it he's got a quite a lengthy waiting list.)

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) ~~It had a really fun sound track, until YouTube deleted the sound for copyright violation...~~

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

2009-09-10T08:41:00.010+02:00

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.....

A friend reminded me of a story I told her a while back. And I wanted to write it to you. We each make meaning of the things that happen in our lives in ways unique to ourselves engendered by what we believe or maybe know.

When I was nearly 45 years old I began to really want a mentoring relationship with an older woman who could provide space and wisdom. It was such a strong desire that I began to imagine her and the qualities that she would have. Qualities that would serve me in our relationship. I imagined and I wrote it down - She would be a woman of deep contentment not because her life had been so wonderful but because she had engaged with it fully and experienced the satisfaction of her contribution. She would have an easy sense of humour, and an ability to play at the slightest provocation! Her heart was inclusive and brave, she had wisdom because she used each experience to the fullest advantage, she certainly would not take me too seriously (the way I take myself). and she relished her love affair with life. She was light on her feet and was happy to be quiet and to listen. There was one woman in my world at the time, she was about 17 years older than me, who I asked to be my mentor - she had a number of those qualities. For her own reasons she said that the timing was not right for her. There was no one else that I knew. It was an unexpected NO. Then I heard my own internal voice saying to me - 'YOU become that woman that you have described, 20 years should do it.' Twenty years felt like a very long time, imagining 65 was almost impossible but it was the most natural thing to agree and that has powerfully reframed the last 15 years!! It meant that whatever came towards me I viewed as part of the 'mentoring programme' I had set myself to become the mentor I imagined. So the difficulties of dealing with my very challenging 15 year old, being with my dad as he was dieing, high anxiety working with people by whom ho I felt intimidated, and all the other mundane challenges that come in a life had a definite purpose. It has made a huge difference. It has given me a context, a reference point, a vision that has been so supportive and helpful. I have 5 more years of this amazing life-designed perfect programme! Clearly the final part of the programme is the most challenging but it is held within a frame of genuine meaning for me and that is why it becomes easy to engage with it no matter the discomfort. Biggest lesson for me is to learn to be playful!

I know that I am a mentor to a number of magical people so already I have been provided with the relationships to test myself out! I think it is one of the reasons why the teaching of mentoring has become such a passion for me. The opportunities for learning are endless.

Enough for today... a million thank yous for the wealth of your poems, words, stories, suggestions. What a community this is!!

Acting Balanced - a balancing act!

2009-09-08T14:00:00.000+02:00

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.

Getting a grip!

2009-09-07T14:45:00.001+02:00

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".

That's my kinda guy.

Monday...

2009-09-07T12:20:00.002+02:00

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.

The week end was pretty good. I am being so excellently taken care of in millions of tiny and large ways that seem to make my path easy. Highlights were time with Deborah (lengthy face to face on Skype) and a whole Sunday with Talia. I experience such joy at their loving, intelligent, radiant presence. I think that I am a besotted mother. I never saw myself as such before. Clearly joy is always possible. I say that because of a very interesting conversation I had with good long time friend Robin Banks. He is giving a talk tomorrow night on “The Practice of Happiness”. We were talking about the possibility that happiness is a byproduct of being totally oneself, and then wondered about the difference between happiness and joy. I think there is a difference of depth and origin. I don’t really know how to articulate it. Thinking about my sense of joy engendered by the connection with Deborah and Talia – I believe that looking and being with them with such delight and wonder, with such admiration for the way that they are working their lives, lets joy bubble from the deepest heartspace. And that joy can easily live with the sadness, trepidation, and grief that I am also experiencing. Don’t know if that makes any sense to any of you. But I have committed to write this blog unedited!!

2009-09-05T11:19:00.002+02:00

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!!

Thursday's Oncologist appointment

2009-09-04T10:00:00.001+02:00

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

Your thoughts

2009-09-03T09:16:00.000+02:00

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.

Intensity

2009-09-01T16:37:00.002+02:00

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

2009-09-01T15:55:00.000+02:00

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.