Tuesday, March 28, 2006

Jack going to India

I have been asked to announce that if anyone would like to send anything to Margi, you can do so through her brother, Jack, who is leaving on April 10 to come to India.
Make it small and light as her bags are bursting at the seams. The exception to this is Noni juice or OPC (available through coach@coachaurelie.org) to help boost her immune system. She finds that these make her feel better, but warning: they are not cheap. Merci d'avance!

Sunday, March 26, 2006

Susan and Margi circumambulating

Ahhh...Fresh air

We have a new phone number that is local to Dharamsala: +91 9816559564


So, we are in Dharamkat, which is just up the mountain from McCleod Ganj, where the Dhali Lama stays. It is absolutely gorgeous here. A friend of Margi’s (We love you, Angus!) has a house here and it’s just gorgeous. We are in the mountains with the most magnificent view. The mountain which slopes in from the right is covered with layers and layers of pine trees. The contrast is incredible against the lighter green of the deciduous trees coming in from the left. And then are the bald spots, which Margi says are shale, although I have never seen shale which shines like this. Margi calls it desert varnish. On the top of the ridge, there is snow. If you walk down the hill towards the tea house, there is a majestic Himalayan snow-capped peak. The whiteness of it is blinding. Our porch is exposed to the morning sun and morning is the most peaceful time. I don’t know how, but I am awake for it and I love that cozy warmth of the sun which is not hot, but envelops you and gives you the right amount of heat all the way to your core. It’s like putting on clothes straight from the dryer. I much prefer it to the winter wind which travels through your bones.

Margi has had so much more energy here than in Delhi. It is quite obvious that her heart and soul are at peace here. She is a different person. Her appetite is healthy. Chatty and involved and making plans. She is dreaming and has motivation to begin working again, neither of which has she really experienced since her diagnosis. It is so wonderful to be spending time with her and learning more about her and about the family. I do wish that I had taken this opportunity earlier in life. There is a lot about us that is the same, which I suppose may score nature some points in the battle of nature vs nurture. Generally I tend to side with nurture, but nature has won this one. Some of the similarities I would chalk up to nurture. Those are some of the personality things which I see in myself, though also Daddy and Granddaddy. But there are also things that cannot be explained that way. Like the fact that we both gag in the morning if we brush our teeth too soon or the fact that our signatures might be indistinguishable to some- the last name anyhow. It’s fascinating.

We are all very happy here- and at peace, though it was quite the journey from Delhi. It is a long trip, maybe 11 hours from Delhi. We weren’t able to leave so early in the morning, so we did the last bit of the journey--the steep curvy narrow mud-slide ridden (actually rocks and gravel, but I didn’t know that at the time) road--in the dark. We keep going up and up until we can go no more because the road is blocked (must be around midnight) and it turns out that we had actually passed the house. It was quite the night. Of course the story is more complicated than just that, but it is a very long story and I will let someone else give their version of it. There are oh so many.... Five, to be exact (driver included).

I have more stories to tell, but I will save them for another day.
Susan, we miss you already...

Thursday, March 23, 2006

4 Week Old Update

Greetings! My apologies for the interruption - like everyone else, I'm looking forward to returning to our regularly scheduled Margi programming, but I just wanted to drop in a quick hello. My name is Amit Saxena, I'm a fourth year medical student from New York, and I was lucky enough to cross paths with Ms. Scharff last month during an international elective I was doing at Dharamshila Cancer Hospital in New Dehli. It was on the last day of my rotation that we met and though we talked for only a few hours, I'm sure all of her friends and family would not find it surprising that she left a lasting impression. Her story was incredible and in the truest sense educational, as I went to India to better understand the differences in health care across borders.

I can't thank Margi and all of you enough for letting me share and follow along with her from this side of the world, and I'd love to help out in any way possible. I'm assuming nobody would be interested in an update on how she was doing 4 weeks ago, and she herself is probably sick of people telling her that she didn't look very sick at all. But I at least can assure you that having spent a month in that hospital myself, I'm every bit as confident that she's getting the best care as I would be if she was in a top US hospital. Dharamshila is a private institution which has some of the most modern equipment in the world. Of course on the other hand, it is still an Indian hospital. There are some areas, like the wards, that may not jive with our notion of what a hospital would look or feel like. It's a dichotomy that may be somewhat of a metaphor for what it seems like India is like these days as a whole, but that's a whole different story. Doctors are doctors everywhere, there are good ones and bad ones - and Margi has tales of both, in the US and in India. But after sitting in on how decisions are made, watching how patients are treated as individuals, and seeing that they have the facilities to provide high standard of care, I have no doubt that she made the right decision to stay in India. The economic and spiritual factors are without contest, and I know that she will heal faster because of it.

Anyway, I'm so glad that Margi has made it to Dharamsala, and I can't wait to read of more adventures. I would be very happy to contribute in any way possible. If there is any medical information I could provide or questions I could answer, please feel free to ask here, or email me at asaxena111@gmail.com . I can promise that what I don't know (which is plenty), I at least would be able to look up. And if anyone finds themselves in NYC and in need of anything, please don't hesitate to contact me!

Tuesday, March 21, 2006

Dharamsala

we have arrived and it is beautiful. the air is fresh and Margi can get out to walk amongst the pine trees. her spirits are refreshed and renewed. it really will be a healing place for her.

all four of us are at the home of her friend, Angus McDonald. it is a lovely spot with a fantastic view of the valley. meals are prepared for us, days are easy and Margi feels that she will be able to get back to her artwork!

the road trip to Dharamsala was full of adventures. stay tuned for stories about 'the adjustor', driving tractors, and dark mountain roads!

cm

Sunday, March 19, 2006

Phone number for Margi

Hello, Hello,
Margi is rushing me off the computer - we are leaving Delhi and heading to Dahramsala .
We have a cell phone number !!!
FeomUS call 0091-9899508455

Friday, March 17, 2006

All of us in Delhi

Hello hello everyone,

Susan here with Margi and Carolyn in Delhi. And Margi's niece Jennifer has just arrived as well. So here we all are, Margi and her crew, yo!

I'm updating as Margi has spent most of her energy the past 2 days with the young women she's been teaching creative writing to here at the hotel. Today was the last class, and they read their stories to us. I am fortunate enough to have gotten to tape them and not only are they absolutely beautiful, but to watch their relationship with Margi as she works with them is so lovely.
I believe stories from the girls and their images will be posted here later by Margi.

The last chemo treatment Margi had earlier in the week was a difficult one. It took twice as long as expected and there were some tests that had to be repeated before hand. Needless to say it's taken her a few days to recover but this morning was better than the few before. And tonight some of her local friends will be joing all of us for a rooftaop dinner.

It's starting to warm up here but Margi's room has a good cross breeze. She really doesn't go out of the hotel much and is well liked by everyone here (understandibly!)
I brough a slew of stuff from all of you which was a gas to give her. I felt like santa clause in March. Jeanie, she's loving the lotion, we decided the smell reminded us of Jean Nate, making it all the more precious. Gerda and Luis she immediately donned the shawl and wore it throughou the morning. And I removed the Virgin of Guadalupe from my neck and placed it around hers. Oh and she was thrilled, thrilled thrilled to get the discs, sketchbook and previous stories. Aside from loading her up with stuff, a fact she immediately bemoaned, she was giddy with all the goodies.

And Deane, she immediately wanted to begin responding on the oppostite pages of all your student's work to send back to them in response!

The struggles continue and sending all your warmth, and love and prayers mean the world to Margi.

S

Friday, March 10, 2006

Margi Scharff on 'Weekend Edition' - Sunday (click here to see)

NPR now plans to air Philip Reeves' piece on Margi Scharff this Sunday, on the
morning 'Weekend Edition' show. Here is the link to the Web piece we'll post
Saturday night:
http://www.npr.org/templates/story/story.php?storyId=5237565

Prince Polonia while I still have hair rooftop dinner

Hello everyone-- I am now staying at the Hotel
Prince Polonia in Pahar Ganj. The phone numbers are:
23581930, 31, 32, 33 & 23561445, FAX 23587026

I'm in #202 a spacious corner room with balconies and high arched windows on
2 sides. The walls are a gentle light cream color and rise to a high
ceiling of white with a mustard yellow trim that for some reason makes me
happy every time I look up. I have a small fridge, a sofa and a large coffee
table to work on. My shower curtain has hand painted bright yellow daisies.

The hotel owner is fully aware of my condition (bothhealth-wise and financial) and he has made every effort to make my stay as comfortable as possible.

This is an unusual business man. On the first day I approached him regarding
a possible discount for a long stay-- explaining that I normally stay in a
$5/day hotel (this one is $20) but that I currently needed the extra
comfort. He responded by saying that he could not change the price of the
room on the books becuase the employees get talking-- but that he could help
me in 'this way' as he handed me 6-- 500 rupee notes-- then threw in an
extra note for good measure-- as an advance to the bill. As I tried to thank
him for this consideration he cut me off saying "No--please, I probably owe
you from another life."

Interesting man indeed-- having started out as a motor-scooter driver and
city guide, then a travel agent, then a hotel owner and now he runs several
community outreach programs right out of the hotel. In all my travels I've
never seen anything quite like this place. One of the programs is a computer
learning class for young women and I am currently doing afternoon
english-language writing workshops with them. The young women are 16 to 24
years old and they are a lively group--full of good humor. I wanted to take their photos yesterday but they resisted saying they were not ready. Today they showed up ready-- all in their best sarees!

I'm toying with the idea of a small dinner party here at the roof top
restaurant some time next week before I leave for Dharamsala. I've
collected several friends here with so much in common other than their
connection with me and I think you would all enjoy meeting one another. You are
all journalists/writers, photographers, artists etc. My next chemo is on
the 14th so it would most likely be on the 17th-- a friday I believe. Earlyish like 6pm and come as you are or can kind of thing. Would be fun but I can't promise I'll still have hair-- as it's already starting to leave... Also depends on whether or not the chemo does a number on me-- will keep you all posted.

More soon-- Margi.

Tuesday, March 07, 2006

Delhi 3/7

hello all,
well, the hospital visit went well. Margi had her blood drawn to see how her blood count was and it was good. her WBC level is acceptable as well as the RBC. so it doesn't look as if she'll have to do extra treatments to 'boost' the blood.

the doctors were very nice and the process was efficient. they are very accomodating and give her clear answers to all her questions. one of the original doctors has been inspired to now collect trash and do some collages!!!!!!!

so. the plan is to have Chemo #2 on March 14th. she will be having more labs before the chemo in order to adjust the doseage correctly.

her spirits are still good and her physical discomfort is reduced. she is eating well and and seems to have more energy every day. the numbness in her hands is still there, but less so. she is getting meds to help deal with that.

we're looking forward to Jennifer and Susan's visit and are planning on getting up to Dharamsala around the 17th. but we will take it one step at a time.

we have had tremendous support here from old friends and new. it is really heart warming to see how hospitable her new Indian friends have been. i am so grateful!

so. will keep you posted of any changes.
cm

Monday, March 06, 2006

gratitude

This is the letter I sent to O.P. Jain of Sanskriti Foundation where I did my artist residency in 2002. I'm ambivalent about BLOGGING it because I wrote it to him personally. However, I feel so grateful to him for his part in the chain of people who helped on this end-- and I'm eager for you all to know his role. The letter also reveals some background regarding my experience with the big C through my mother's illness in the early 1980's and this is something that most of my long time friends may know but my newer friend do not. Anyway-- I'll let Susan decide-- whether or not it is rude to post a personal letter-- sorry Susan for passing the buck.

I have many more letters of this sort to write-- will keep you posted. Love, M.


Dear O.P. Jain,

I will never be able to fully express my sincere gratitude to you for your immediate, compassionate and concrete help in a time of serious need. That day on the phone when I explained to you (and so bluntly as I had no energy to spare) who I was and my condition-- You wasted no time and said you would make some calls and and find the best place for me. This you did and the next morning I was admitted to the Dharamshila Cancer Hospital and Research Center under the capable care of Dr. Pawan Gupta.

I want you to know that the care I received was, not only the highest quality medical care possible, but also that the doctors understood the importance of communication and understanding. One might think that in a life and death situation the fact that the person is an artist would be trivial. But it is not so-- and my biggest fear was that I would be putting my body into the hands of doctors who would not see or understand or care about my artist spirit. I have never been capable of making a separation in my being between artist and person-- as it is one whole thing.

The medical staff at Dharamshila (from Dr. Gupta and across the board) immediately responded to my need to know everything they knew in order to make the decisions, regarding choice of treatment (or not), in a manner true to my spirit. They addressed my individual needs and fears while simultaneously tending to my body. In fact, the very first thing they did was to relieve my immediate discomfort by draining the 'free floating' (it sounds so cheerful) fluid-- and it took some time-- while I kept insisting that they look at my portfolio which included photos of the art as well as a few photos of me crossing a stream or trekking in the Himalayas etc. In retrospect it must have been quite a comical scene-- a lady in the bed of the emergency room with tubes coming in and out of her body-- one tube with golden liquid flowing out and the other tube with nutrition flowing in-- and I'm insisting the doctors look at my book of road collage! Comical or not it was as important to me as the medical records from Aashlock Hospital and they not only looked but I could see that they were moved and then I knew I could safely leave my body in their care.

And so I turned myself over to the care of the medical staff at Dharamshila and for the next 4 days was cared for and analysed and tested... and together with the doctors came to the decision to try the chemo therapy treatment. At this point I must tell you that this is a thing I promised myself I would never do. My mother died at age 55 from cancer. I was 25 and I cared for her on and off during a 2 year period where she underwent various chemo therapies along with radiation therapy and surgery and I have seen all too closely the 'medical machine' version of life and death. I vowed to live my life as fully and true to my spirit as was possible-- knowing that, in terms of calendar years, my life span might possibly be shorter than some. I promised myself that if my mother's cancer genes ever caught up with me that I would accept and face early death rather than die in the way my mother died. Now I find myself saying I'm not ready to go and-- with the help of Dr. Pawan Gupta especially -- I came to the decision to try the chemotherapy which he assures is far more advanced than in my mother's time. I am committing to each treatment (which entails one 4 hour IV drip every 3 weeks) one step at a time-- keeping open my option to discontinue treatment at any time.

My plans are to live in the mountains I so love in the Dharamsala/McCloud Ganj area where I lived for 3 months in 2002-- and to commute down to Delhi for the chemo treatments. To my surprise there seems to be a network of people (artists friends and family) who are trying to round up funds to help me pay for the treatments. And a Los Angeles gallery is possibly arranging some kind of fundraising event. So I feel lucky that they sprang out of nowhere-- or so it seemed to me.

Back to my gratefulness to you for your part in this amazing-- life affirming-- chain of people and events. I feel lucky in a way that this terrible thing happened to hit me while I was here in Delhi where quality medical care was immediately available. This is also the point at which you have saved my life (and I apologize for sounding so dramatic-- but it is so). I will try to find some way to thank you for your immediate compassion and response to my dire situation. But whatever I come up with-- I know it will never seem adequate from my point of view. Thank-you again and always.

Sincerely,
Margi Scharff

Sunday, March 05, 2006

Stories from the Prince Polonia (New Delhi 2006AC)

And so we meet again

When I was a little girl I played my games in the forest. Pretending to be a wild animal, I crouched down on all fours, and lapped the water from a stream. I heard a soft sound-- just a light crackle of leaves. My animal eyes looked up, and greeted without fear, the little girl who was watching.

Saturday, March 04, 2006

Stories from the Prince Polonia (New Delhi, India 2006AC*)

Swimming Lessons

Oh how it always seems to come back to trust. Trust over fear. Throw
yourself into the water and trust that your body will know how to swim.
Trust over fear. And doesn't the fear really push you into the direction of
trust? At least intitially-- before the too analytical mind steps in with
all kinds of doubts and what-ifs?

But the lesson of trust is one that I seem to have to learn over and over--
each time unique as if I'd never known the lesson at all. I throw myself
into the water and trust that my body will swim, or at least know how to
surface for air. But the water in the lake, where I first learned to swim,
is different than the river's swirling currents or the rolling swells and
crashes of the ocean's salty waves. Each liquid requires a different kind
of swimming, a different set of body motions.

I have been lucky-- having learned to swim in many manners of water. I was
only a little girl when I first learned to take the leap of faith from the
top of the 'Big Falls' into the cove off the Tennessee River. I'd watched
(with envy) my brothers do it with grace and humour in the form of swan
dives and multiple flips. The best I could do was a clumsy jump-- arms
flailing and legs kicking outwards in order to clear the projecting edges of
the waterfall's unforgiving stone. Eventually I took the leap and survived
the stinging slap of the water against my awkward arrangement of body parts.
I sank fast and hard-- deeper into the cove than I 'd expected-- the water
colder and darker with each inch of descent. But my little girl's body did
know how to surface and my mouth opened wide to take in that crucial breath
only after I pierced the line where water meets air.

As an adult, I walked alone in the Himalayas-- through rains so heavy the
land was sliding down. Even then, with my eyes forced almost closed by wet
winds, I trusted my legs to brace and balance against the overland currents
of a monsoon flashflood. I trusted a butterfly who lead me through
knee-deep mud back to a walkable path. And somehow, slowly, I made it
safely to my destination.

So now I face the ellusive waters of a sinister cloud. And I wonder. If I
throw myself into this questionable form of water, this puffed-up cumulous
mass, dark and heavy with lightning bolts and the roaring thunder of a
child's worst nightmares-- Can I still trust? Trust over fear. But can I
trust that if I throw myself into the cloud that my body will know how to
swim across the sky?

As usual, the answer does not come in advance. "Trust over fear" I tell
myself. "Trust over fear" I repeat in disbelief. Trust over fear. Trust
over fear. Trust. Trust. Trust...



*AC: after cancer

Delhi 3/5

hello all,
we have moved out of Gaye's home and are now in a small hotel called Hotel Prince Polonia. we are in an area of Delhi called the Pahar Ganj- affectionately called 'the ganj'. it is an area that is popular with the budget travelers and both Margi and I have memories of days spent here. it is crowded and overflowing with all things India; tricycle rickshaws, auto rickshaws (ADA tuktuks), bicycles, cars, sacred cows, street vendors, pedestrians and beggars. it is not a neat and tidy part of India by anyone's definition, but colorful (sometimes too noisy though) and we find comfort in the familiarity.

Margi's room has lots of light and is very comfortable. she has enough room to do her work and relax when she needs to. the hotel has a restaurant, internet cafe and friendly and helpful saff. the restaurant is on the rooftop, giving us views of downtown Delhi and the neighborhood. the other evening we enjoyed fireworkss that were probably provided for Bush's entertainment.

the day that i was looking for hotels was the day Bush was in the city. streets were blocked off for security and to allow a place for protestors. i happened to pass by the Communist Party's protest and it all seemed very organized and under control by security forces. no violence, no flag burning, no second glances at me. ironically, i was also passing by one of the McDonalds here and slipped in to have a Sprite. as i sat and sipped my Sprite i watched the McDonalds' doorman shoo away a beggar woman while beyond her on the streets a group of Muslim protestors strode by. sometimes our worlds collide in the most unexpected places.

Margi will be going to the hosptal next Tuesday to do lab work. then we hope to have a better idea of what her chemo schedule will be. our plans for going to Dharamsala will revolve around that. we are in limbo until then.

the neurotoxicity in her extremities does not seem to be getting any worse at this time that is a relief. she is sleeping better and able to get some of her writing done. being on the internet wears her out though, so she is only doing limited emails at this time. yesterday she was busy with the NPR reproter and getting the interview all finalized. we haven't heard the final, final word of the braodcast time, but will let you know ASAP.

her friends here have been tremendously supportive and helpful. whether here in Delhi or Dharamsala, i always know that we will be taken care of.

so....until we know more from the hospital.
namaste!
cm

Wednesday, March 01, 2006

passing along words from Margi

in an email from Wdenesday 3/1 Margie wrote:

I'm working on a chemo update for THE BLOG -- sounds like very bad weather or a giant slug. You guys are hilarious-- I've been rolling with laughter at the little bits Gaye has conveyed to me-- my favorite being "Who's Harish and why is he sleeping behind the couch?" I do have to say it's been a bit strange having my feelings described using adjectives I would never use-- Like she's worried about such and such as I'm not a worrier but would certainly be concerned about something in a matter of fact way... or we're having a wonderful time when my stomach is billowing out and my face is getting skinny and there is a beast inhabiting my body! But it's also been kind of hilarious to let the fiction take on it's own life as I have been struggling to maintain some semblance of balance between 2 worlds.

Oh and please do tell everyone not to get too excited about this NPR thing as Phillip told me he's having to cut it down to 5 minutes-- (we talked for at least 40-60 minutes I believe!) I would not want that job and there' no telling which segments of our all over the place (hilarious to grim) he'll be using! And do tell me-- is an artist facing cancer and impending death a more interesting story than an artist full of life? The extremes we artists have to go to to get media attention!

Delhi Wed 3/1

hello all,
i'm sorry for not 'bloggin' sooner
Margi and i have been staying at the home of Gaye and Tim Facer while they were out of town. it has been a great place for both of us to have some quiet time together to sort through some of the details and for me adjust to being in India all of a sudden.

Margi is weak and takes naps regularly, but her humor is there and she seems to be free of pain. there is discomfort, but not pain. she is sleeping ok and eating ok. her appetite is still there but she can't eat a lot because of the free fluid still in her gut. we've been REALLY blessed to have had Gaye's housekeeper,Veena, come in and cook some wonderful meals for us. it has been such a relief to have that help.

we are moving to a guest house tomorrow in the Tibetan section of town. i will be scouting out places and will find something that will be central to food, transportation and email contact. i'm hoping to find a nice place that we can just unpack and hang for a week or more. i'm sure it will be easy now that the Tibetan New Year celebrations are finished.

Margi has an appointment next week with the Oncologist to check her White and Red Cell (WBC and RBC) count. she has been having the tingling sensations at the ends of her fingers indicating some neurotoxicity from the chemo. that concerns her, since the Drs say that it is cummulative and it could affect her ability to do her art.

the plans to go to Dharamsala are still in the works. we just don't have a date. a lot depends on the Dr's visit and how she feels. we are looking forward to Susan coming, so we may wait here for her. but, again. i'll keep you posted.

i am pleased that she has as much energy as she does. we went for a short walk around the block yesterday and that felt good to her.

she's planning on adding to the blog and is slowly working her way towards that, don't worry, i'll crack the whip and get her moving on it. she says that she may be replacing the weather reports with the 'chemo' reports......maybe. the weather in Delhi is smoggy and getting hotter....

all for now.
cm