Saturday, October 07, 2006
Wednesday, September 27, 2006
Now that the right honorable Ms. Krogg has let the proverbial cat out of its rather illusionary bag, it is time to share information that has already entered the public record. (and is hot off the press)
The internationally famous Ms. Scharff has two scheduled events at Rio Hondo College this fall. Mark your calendars for the artist's reception and gallery talk on November 2, and another presentation of her work and travels on November 7. Both events begin at 7 pm and are FREE and open to the public. For additional information, you can contact the RHC Cultural Events Hotline at 562.908.3492; RHC address: 3600 Workman Mill Road, Whittier, California, 90601.
Wishing M. a safe and smooth flight to the West Coast.
Sunday, September 24, 2006
It’s been busy for me since I left the “bubble” but I’ve been meaning to get some information to everyone…..
I was able to attend one of the days of the Cancer Control Society Convention over Labor Day weekend. The Society is a resource for alternative therapies to cancer treatments and other debilitating diseases (rheumatoid arthritis, chronic fatigue syndrome, Hepatitis and other immune compromised diseases). It was a fascinating day with lots of speakers and booths and information about options to the standard treatments of chemotherapy, surgery and radiation! There are alternatives that are working!!!!!
I also went on the day tour to some of the Clinics in Tijuana, Mexico that are providing these therapies in a hospital or clinic setting. It was fascinating and some of these clinics have been around for 30 years! Generally, they build the immune system and detoxify the body as well as address the cancer in a way that does’t have the damaging side effects that chemo and radiation have. it was exciting to see these therapies helping people! And one of the clinics was using the same Biofeedback program that i am using! yea!!!!
If anyone would like this information, please feel free to contact me or contact the Cancer Control Society at www.cancercontrolsociety.com or 323-663-7801.
I know that we are all grateful that the path that Margi had to walk has proved successful for her, and I don’t discount the work that the doctors are doing. But if anyone is faced with the decisions that Margi has had to face, then I want everyone to know that there are options out there that are working and worth checking out.
It has come to the attention of our Office that one Margi Scharff, aka Wonwulf, aka The Wild and Woolly (although once temporarily hairless) Traveler of the Western and Eastern World, is about to return to El Pueblo de Nuestra Senora la Reina de Los Angeles.
Ms. Scharff is projected to be projected into the airport known to various lax personages as LAX on Friday, September 29, 2006. She will immediately be conveyed to the first of various safe houses, from which she will issue proclamations when she is damn well ready, thank you very much.
Ms. Scharff catapulted into Memphis, TN some time in the last week or so (our sources either lack the proper information or are asking too much money for it), allegedly to see her family. How she managed to elude the proper authorities and SNEAK into the United States without notice, we have not been able to ascertain, but our operatives are at this very moment moving stealthily through various communities attempting to collect information concerning this serious breach of rational security.
The surreptitious nature of Ms. Scharff’s return to her natal land no doubt owes A GREAT DEAL to her continuing violation of Cyberspace Rules, although said Rules have been enumerated to her innumerable times; to wit, the Essential Law of Blogs, which is that new data MUST be periodically injected into the permeable plasma of the plausible plutosphere from time to time, or the whole thing stutters and dies, sort of like that sourdough starter we had years and years ago which needed a steady infusion of flour every week or it starved, and it was just too much of a responsibility, wasn’t it, so we eventually threw the whole thing in the trash with only a tiny little whimper of guilt and a much larger sense of relief, now, didn’t we?
But we digress. And then we just stop, flat. Because we’re like that.
Director of Cyberspace Etiquette
Friday, September 01, 2006
I do believe my oncologist, Dr. Rajan, is a genius.
Yesterday’s CT scan report:
Name: Mrs. Margi Schroff Age/Sex: 51 Yrs . / F
Refd. By : Dr. Sandeep Rajan CT No. : 1464
Cr. No. : 36967 Date : 30-08-2006
CECT Thorax & Abdomen
- Liver, spleen, pancreas, both kidneys and retroperitonium are normal.
- Bladder is normal in contents and perivesical tissue.
- Both ovaries are normal sized and unchanged since the last exam.
- Uterus is normal
- No free fluid seen.
The trachea is central.
Pulmonary parenchyma interstitium & vasculature in the upper, mid & lower zones show no abnormality on either side.
The aterial & venous trunks, ascending arch and descending aorta & arch brances are normal. The brachio-cephalic veins & SVC are normal. No lymphadenopathy seen.
The tracheal bifurcation & lymph node areas show no abnormality.
The right & left main bronchi & their branches as far as can be traced are normal. No hilar lymphadenopathy seen.
The pleural fissures & main pleural cavity are clear.
The osseous window
The vertebral bodies transverse, processes and ribs show no abnormality.
Soft tissues are normal.
Impression : Normal study.
Tuesday, August 22, 2006
The note from my mother:
Dear Blog readers (all 3 of you),
Please excuse my daughter for her failure to blog and email during the last several weeks. Although she did survive the 6 dreaded chemotherapy sessions— she was immediately hit with a wicked (come-and-go-type) chest cold which didn’t kill her but did a number on her energy level. Also, she was staying at Angus’s lovely house in the hills of the India Himalayas and it was a bit of a trek to the nearest cybercafe. It is after all monsoon season in India and given the recurring chest cold it would have been risky for her to trudge up and down the mountain (in the mud and pouring rain and fog so dense it’s like breathing water) to do the blog.
Sincerely (from the other side),
Theresa Cecelia Madarda Synakowski Scharff (Margi’s mother)
p.s. Please feel free to contact me if you have any further questions.
There. That said, I have to admit I’m still spinning from the idea of getting a life extension! I'm slowly regaining strength and hunkering down on the work-- with 2 tandem shows coming up in Oct /Nov in L.A... I have spells of energy while I’m working, but when I stop, I find myself exhausted. Will have to learn how to regulate the supply. Also, still fighting off the come-and-go-chest-cold (that my mother mentioned) while the monsoon rains fill the sky.
I have a great place to watch the weather. I’m now in McLeod Ganj and have a corner room at Hunted Hill Guesthouse with HUGE weather-watching windows (2 wall to wall and floor to ceiling!) and a balcony. It costs Rs500 (US$10.87) which isn’t bad though still more than my “p.c. days” budget of US$10 for the whole day’s expenses. The guesthouse owner, Yesh, kindly rounded up an Xtra table for me to work on— so now I have everything I need.
The main window of my room faces north towards the hills and high mountain peaks of the Dhauladahar (‘white mountains’) range in the India Himalayas. The monsoon-fed vegetation is as lush as ever with infinite shades of green showing off in the tall pines and rhododendron trees mixed with ferns, mosses, lichens and scattered terraced rice paddies... The landslide sections on the hills across the way expose the metallic greys of slate in massive fan-shaped rockslides. Above the tree line, the high peaks refuse to settle on one color. When not dressed in clouds, they change their colors by the minute from subtle greys and blues to rich browns, purples and Day-Glo pinks at sunset... The view of the 15000(+)foot “Moon Peak” greets me in the mornings and makes me happy, which not being a morning personality, is a pretty tall order. The mountain is up to the task.
Yours truly/truly yours,
Monday, August 14, 2006
The hairs that were the last to go are now the first to return. My eyebrows and eyelashes are making a rapid and welcome, albeit stubby and slightly punkish, comeback. The nose hairs are a little slower. Head hairs (which left me long ago-- just after chemo #2-- while brows and lashes hung in until after chemo #5!) are snail’s pace slow on the return.
In their absence, I’ve developed a deeper appreciation for the specialty functions of the brows and lashes. Besides looking sexy—the brows and lashes really do protect the eyes from sweat and dust particles and small flying bugs of which there are many during monsoon season in the India Himalayas. It seems I was always rubbing something out of my eyes while these uniquely shaped and purposely positioned hairs were missing. As for the nosehairs— no not sexy, but in fact they do have an essential job. Without their fuzzy protective filter-- my sinuses have been assaulted repeatledy even though I wear a bandana over my nose and mouth more often than not. I’m just now getting over the last (hopefully) in a multiple series of sinus turned chest-colds that started near the end of chemo#5 after nose hairs departed.
I can’t say what the absence of head hair does other than make people stare (if you’re a woman) or think you’re a nun. Here in Dharamsala, I’m spared the staring since the bald heads of Buddhist monks and nuns outnumber the fully-haired heads. I can say that my personal experience of baldness has given me a new understanding as to why bald men rub their heads so much—it really (really!) feels great. In general, head hair seems dispensable as far as physical function-- a scarf or cap can keep the head warm. And my niece, Jen, early on pointed out the advantage that I wouldn’t need someone to hold my hair back while I was vomiting. But I do miss the aesthetic funtion of having head hair. The new ones are a motley bunch, not much on aesthetics. I couldn’t even name the mixed colors. They are taking their time to grow-- still shorter than my eyebrows which rushed right back. But the hairs that have arrived are soft and silky. Time to get a brush.
Thursday, July 13, 2006
The very GOOD news is that Brian and I just got back from the hospital and blood test results showed my CA-125 at 4.61--- well within the 0-35 normal range!!!!! Red and white blood cells were also back in normal range. Dr. Rajan says I can now say that the cancer is in remission. I can't express how happy this makes me! It’s like the parol board just let me out of jail— only better! Life extension, how very very nice.
Am still experiencing light-headed-ness which Dr. Rajan says is likely due to low potassium level-- gave me a supplement to fix it. Also, still struggling a bit with the sinus/cough/chest thing-- we’re working on that and it has, in fact, been improving with all the arrows pointed it’s way. He also is treating the lingering neurotoxicity in my hands and feet with a new medication. These things I can deal with! Ding Dong the witch is dead- the witch ol witch- the wicked witch... (Please feel free to sing along.)
All that said-- Dr. Rajan made it clear that we cannot, because of the recurrent nature of the illness, use the word ‘cured’ and that I’ll need to continue monitoring my CA-125 levels every so often (at this point every 2-3 months). He reiterated the benefits of exploratory surgery at this juncture but accepted my decline-- and my reasoning—that I would like to try working on my immune system and hopefully it will fight off any possibly remaining ‘cancer seeds’ as he calls them. He also acknowledged that the surgery is still an option if the cancer returns. I am scheduled for an appointment on August 29/30 for an additional blood test and CT scan. It’s sooner than he would like but I felt it was important to do while I am still here in India and have available the affordable services of Dharamshila Hospital.
Again, I need to thank all of you, my very dear friends, for being with me through this extremely difficult time. This will take a very long time and so I hope you don’t tire of my gratitude. Without you, sending encouragement and support (physical, emmotional, spiritual, intellectual, as well as financial) I would not have made it through this dark tunnel. I was truly stunned and needed all of you-- to help me believe that surviving this assault was even possible. Thank-you! Thank-you! Thank-you! I say it every night and every morning.
with love and gratitude,
p.s. more good news on same day— SPAN magazine is featuring my road-collage work in the current July/August issue. It will be available in English, Hindi and Urdu. The writer, Daniel Haber, an Asia based travel-writer, who I first met in Dharamsala in 2002 and then met again in Kathmandu and again in Bangkok in 2003-- approached me with the idea in March 2003-- We finally got to it.
Monday, July 10, 2006
I’m sitting in the middle of a cloud, completely surrounded by opaque air, and the sky beyond is a mystery. The rains fall intermittently. Occasionally the cloud gathers itself in varying degrees of density and brightness — until the mood shifts and the veil becomes completely uniform. A blank slate, soft and fluffy, with no clues of what lies beyond.
Tonight I head back down to Delhi for my blood test and check-up 4 weeks after chemo #6. Brian will accompany me on the train and help me cope with the jitters that come with the hospital visits. Hopefully, it will be a short visit — no more chemo is scheduled and this thrills me to the core. Also, according to the Delhi weather report, the temperature has been hovering just above 100 degrees, with humidity in the high 80s. The monsoon has not yet graced Delhi. So I hope to zip in and back out in just a few days time. As long as my CA-125 level remains low, I won’t need another check-up for another month or so -- when I’ll return for a fresh look inside my body with a CT scan.
Here in Mcleodganj, I have started seeing a Tibetan doctor, Yeshi Dhonden, former doctor of the Dalai Lama, in preparation for the end of chemotherapy — to ward off the return of any cancer demons. He has worked with cancer patients around the world and particularly in San Francisco in affiliation with a Cal State University program that focuses on breast cancer. (You can google him for further info.) He has given me a course of pills that look like polished balls of dirt and also taste like dirt. His translator tells me the pills will keep the cancer from returning. A week’s supply costs 60 rupees. There is no charge for the consultation.
My most immediate concern is to drive away a creeping sinus and lung infection — it would be a shame to succumb to a cold after surviving all that chemo. It’s the same bug, I believe, that hit me in Delhi just before chemo #6 — that Dr. Rajan gave me antibiotics for-- which I had to quit too soon because of the rollercoaster-sledgehammer effects of chemo #6 (just couldn’t keep things down). So now I am coming at it from all angles: back on the antibiotic from Rajan as well as some Tibetan medicine (more dirt pills) from Yeshi Dhonden and some effervescent Airborne tablets from Penelope and Deane and colloidal silver sinus spray from Susan and QX from Carolyn and of course, ginger tea from the Hakeem brothers at Him Queen… That should do the job.
On a more important note -- I read today that the Dalai Lama is currently suffering from fatigue and lung and chest congestion. He was admitted to the Tibetan hospital here 2 days ago, just after his birthday. The doctors have prescribed 10 days of complete rest along with Tibetan herbal medicine (dirt pills) and they have canceled all of his current engagements, which included lectures in Europe. He had just completed 10 days of intense 'teachings' here in McLeodganj. They attribute his fatigue in part to his hectic schedule. No doubt -- there were people from around the world here to attend the 10 days of teachings. I wish him well.
In the meantime, I’m here in the cool monsoon clouds of the Indian Himalaya, alternately working and resting. My monsoon cloud has thinned a bit and I think I can make out some shapes of things I already know are out there. A first-time looker would never know about the expansive valley below or the high mountain peaks above. Time seems suspended in this no-sunrise-sunset and so-very-still atmosphere. For the moment, there is no hurry.
(email from Margi, received by Penelope - she asked me to post it, as she was too tired Sunday night to post it herself)
Saturday, July 08, 2006
After two days of traveling, (all Wednesday to get to Delhi, and my midnight flight to the US) I arrive home in Los Angeles to very sad news. My cousin Renee lost her own battle with cancer and died earlier that Thursday morning. She had only been diagnosed a few weeks before I left for India with 4th stage cancer, but had been very ill for the last year and a half without any conclusive diagnosis. I visited her before I left for my trip, and, characteristically, she wanted to know absolutely everything about Margi and asked what she could do. She and my mother grew up together in NY, and after my mother moved out to California, they once again became as close as sisters. So, my mother has lost her oldest and best friend.
I have been asked to speak at the funeral tomorrow, so I am doing my best to write down the stories that best describe my own relationship with this remarkable woman. Which of course, brings me right back to Margi. Every day that Margi can slowly drink her morning tea while gazing out on the "Pong" wetland valley below, eat her carrot cake, chew those Tibetan dirt pills, and assemble those snakes for her fall show, is a gift, and I am very grateful.
Tuesday, July 04, 2006
Leaving Margi is more difficult than I could have imagined. She says that the good days outnumber the bad, but sometimes it is a mix. She stayed in her room all day today; we did some fun photography of her bald head, and laughed a lot.
This trip meant more to me than I could possibly describe; and I am grateful for every minute spent in Margi's "bubble." Every moment was precious, and sometimes wild. There are no goodbyes, she insists, and I am content to trust her judgement on this. I will miss the daily "check-ins" around 12:00 or 1:00, and leaving carrot cake by her door in the morning. (she likes it for breakfast) She made it all very easy for me; answering questions, giving advice. She didn't mind when I would go off every day for a few hours to draw or paint somewhere, and always asked to see the day's work. I would leave post-it notes for her in our "mail box" (and she would respond) between our 2 rooms so that we could stay in touch without intruding on one another's space and time. It was a very gentle way to communicate, and we had fun with it.
Tomorrow, I take a taxi to Jammu, and fly to Delhi from there. I will see the Himalayas from above and that should be quite a sight. When I arrive in Delhi, I will have a few hours before I need to be at the international airport for my flight home, supposedly to shop, but might just find somewhere cool to sit and have dinner.
And I really, really liked India. Wonderful, kind people.
Time to pack.
Sunday, July 02, 2006
One morning last week, we brave a morning storm to visit a Tibetan doctor. Margi says that she has done her 6 rounds of chemo (the sledgehammer) to reduce her CA-125 levels to single digits; now she would like to try something else. We arrive at the doctor's office; it is jammed with patients. Margi is about to turn back; it doesn't appear likely that she will be seen, and the concept of being around all those other sick people is very discouraging. But we stay a moment; I notice that most of the crowd is now receiving medicine and paying bills; maybe it is not so crowded after all. Margi braves it; walks in, tells someone she has cancer, she cannot wait, and she is immediately ushered into the office, past other waiting patients.
After a short while, she emerges, prescription in hand. The doctor is none other than Dr. Yeshi Donden, formerly the physician of the Dalai Lama, and professor to the other doctors at the Tibetan Institute of Medicine. We both examine the doctor's writing, trying to de-code it. We give up. So does everyone else in town Margi asks. For comfort, or entertainment, we decide that the curly marks above his writing are birds; this makes us both smile.
So here is her routine: she takes 4 different medicines a day. We tease her that all the round little pills that she must chew look like dirt. She claims they taste like dirt as well. But, nothing can be worse than chemo, she reminds us. Her appetite is very good these days. She had a very rough morning last Wednesday, and that seemed to be the "inspiration" she needed to follow through and see this doctor. She has a follow-up appointment for next Thursday (with urine sample!) Dr. Donden has treated other women with ovarian cancer before; this gives Margi some hope. She has now had 3 good days in a row, and that makes us both happy.
Margi's future plans (as far as I, or anyone else, could possibly know):
She goes to Delhi for a check up on July 11. Her appointment is for the 12th, and her good friend, Brian, will accompany her for the journey. They will be in Delhi for at least another day to wait for the lab results, and then return to Mcleod Ganj. Margi may then stay in Dharamkot at her friend Angus' place for a few days; he leaves for a long trip back to Australia, beginning today.
Margi has two exhibitions scheduled for Los Angeles, so she will be back in the states through November. (ok, as of this writing, this is what she has told me) She has been working out her opening dates; one will be on a Thursday night, the other on a Saturday night; about 2 weeks apart. For the non-profit venue, she is thinking about installation, photos, an artist's talk, readings, etc., so it is going to be quite an event. They will both be great celebrations; be sure to invite everyone you know!
I see monkeys every day, everywhere I go, it seems. They walk by me when I sit and draw, and steal my left over lunch (ok: that was more of a bargain: lunch for photos) I have, unexpectedly, grown very attached to this place. I love the mountains, the forests, the waterfalls, the mix of Indian, Tibetan, Israeli (I call Dharamkot "ittle Israel") and Kashmiri cultures, and the friends of Margi's that I have met. I am even beginning to love the monsoon.
Friday, June 23, 2006
We begin the arduous hike, and, as Penelope mentioned below, she leaves me in the dust. It is okay, she says, for even those without cancer to take a break. And I do. We finally get to our spot, and it is indeed breathtaking. I take advantage of her good humor and whip out the camera. I know she has gone through this camera ritual with everyone else, but I still need my pictures of her, too. Margi jumps around and poses on rocks; standing, kneeling, sitting; I keep shooting.... I see a few goats nearby and begin to photograph them, as well. And then, we get carried away....Margi decides on a great photo-op: she pulls out a cracker to feed a goat: "Take the picture, Deane!" As I do, we are run over by all the goats....like waving candy in front of children. While Margi and I push them, repeatedly, off our rock, I keep shooting. So much for our collective art direction.
On the hike back down the mountain, we stop to visit with Aju, the sweet, gentle young man who runs the chi house up here. As soon as he sees Margi, he begins to share his tale of woe and heartbreak; it is a Shakespearean classic complete with lovers who wish to marry, and families with different plans... So, here is Margi in her element; she becomes Aju's mentor, guide, counselor, and caring friend, offering sound wisdom and advice, as well as words of comfort and support. By the time we make it back down the mountain, it is early evening, but Aju is smiling at last, willing to hope that happiness may soon be his.
Margi and I have fallen into a routine, very similar to the one Penelope created with her. Mornings are quiet, uninterrupted affairs. I paint, draw, hike; Margi takes care of her morning rituals. We sometimes meet for lunch, or for tea on the rooftop to watch the sunset. Today is an easy day, we have plans for tomorrow. But plans can change at any moment: the side effects to chemo are strange and bizarre; Margi reminds me that each day is different, so we take it one afternoon at a time.
I love Penelope's photos; now that I am here, they look very familiar (but no goats...)
Thursday, June 22, 2006
Tuesday, June 20, 2006
"Please close the balcony windows and doors securely when you leave your room because of the monkeys." Just another reminder that I am far from home.
Margi sleeps on the train (we end up with a private compartment, and this makes her very happy), and, even though our train is over 2 hours late, our driver is waiting for us when we arrive at the station with a big smile. We arrive in Mcleod Ganj in time for the afternoon rain, and I am grateful for the cooler temperatures.
I get my first real night of sleep, finally, and I'm up at 6:00 am, ready to walk and explore. Later, Margi takes me on the now famous walk around the temple grounds, and after seeing her so sick on Saturday, a mere 3 days ago, I am amazed at her recovery. Yesterday's rain has left us with a clear sky, and I finally see the Himalayas, peeking out from behind the lush green hills which surround us. They take my breath away. We each spend the afternoon on our own art, and have dinner with Angus at the Ashoka Restaurant. There, on the balcony, just 2 feet from our table, is my first monkey sighting. This, along with Margi's increasing strength, makes me very happy.
Namaste and Toshi Delek (welcome)
Sunday, June 18, 2006
She had a bit of a rough day Saturday. But we called her doctor, and, after hearing a list of her symptoms, he prescribed an initial treatment plan of Sprite + crackers, before moving on to the big guns. The medicine worked. By 6:00 pm, she was all smiles once again, and we were both relieved and back to jokes and laughter. The longer stay in Delhi turned out to be the right move; knowing that her doctor was close by gave her much confidence; she would not have been able to do the long journey north feeling as she did yesterday.
Correction: Margi is building snakes, not dragons. I was being metaphoric; however, it is Margi's work and accuracy is appropriate here. They will always be dragons to me.
Next stop, Mcleod Ganj.
Thursday, June 15, 2006
Kartik picked her up from the hospital and brought her back here to the Prince Polonia. Kartik is a friend of Maya's, who is a friend of Sandy's, and you all know the rest....he is a wonderful storyteller, and regales us with great tales; after hearing of my penchant to pack bottles of water when I travel, he told a story of a famous Indian figure, who, when invited to the Queen's coronation, had 27 (or was it 40? 50? Kartik? I wasn't taking notes; too mesmerized) enormous containers made so that he could fill them with water from the Ganges, where he bathed and drank every day, and still continue to do so when he was far away from his beloved India. He tells us that one of these famous containers is now in a museum.
Margi takes this opportunity to show us her current body of work, and spreads out a series of very new collages, talking about her 2 shows in the fall in Los Angeles. She has decided that she doesn't really have time for cancer; she has shows in the fall. She orders mango lassi each for her and Kartik, I have tea. She allows me to keep the label from my teabag this time; it is my first day here, after all, but she will need any others I collect; she is building dragons, after all.
Margi and I laugh and giggle that afternoon at her favorite restaurant here, the Malhotra, and teaches me how to roll my chicken tikka inside the pita like bread. We talk about Dorland time here in India, each of us working on our own art while seeing each other once or twice a day. She is very spirited and full of life and ideas. She talks about her installation at Rio Hondo; what she can now include there because it is a non-profit venue. Since I started teaching this spring at Rio Hondo, I can describe the space to her; I think it will be an excellent venue for her work.
Haven't done any exploring of Delhi yet; just trying to rest up and get my sea legs back after the 22 hour flight. Thanks to Carolyn for picking me up at the airport, even though her own flight out was just a few hours later. I hope she is thoroughly enjoying her few days in Thailand of r&r before heading back home. How extraordinary you are, Carolyn, to have been here all these months with Margi.
So happy to be here and see Margi's smiling face. And so looking forward to going to Dharamsala. Margi warns me that it will be very crowded in Mcleod Ganj, where we will be staying; the Dalai Lama (spelling?) is doing some teachings here at his Tibetan home in exile. But I hunger to see the mountains. I am looking forward to hiking and painting and giving my lungs some fresher air.
Tuesday, June 13, 2006
well, actually, there hasn't been a chemo #6 yet, since Margi's WBC (white blood count) was too low for them to safely give the chemo. so she had an extra night in the hospital and was given some IV solutions to help boost her system and then will have the chemo today, pending results from the lab.
it is surprising that her count was low, since she seems to be doing ok (no fever, no diarrhea). she did have a couple of tougher days this past time in D'sala with some diarrhea and a short-lived fever, but that had seemed to pass without incident, so it leaves us all a bit perplexed. Margi was thinking that the insecticide spray at the hotel might have contributed to her not feeling so well....just too much for her system to handle with chemo and everything else.
they did a chest xray yesterday, but that was clear. she has been feeling more lightheaded these past couple of weeks, but that doesn't seem to be related to the low WBC count, according to the doctors. when i spoke to her this morning, she was feeling better, so the IV has done something good.
Margi is entertaining herself at the hospital while i am running around trying to do the last minute things before i leave. thank goodness Deane is coming so that Margi will have someone to be with her when i leave! their train tickets have been changed to Sunday night to accomodate the chemo schedule. it will be a hot couple of days for Deane, but there is AC to retreat so i'm sure she'll be entertained with all that is around here.
i've contacted her friends here in Delhi, so they know that she might need some support in the next few days before she leaves for D'sala. and Brian has been alerted as well. so all support is in line!!!! hurray.
it is hard for me to leave at such a point. i was really intending to see her through the last and final chemo and make sure all things were good before leaving. but the wheels are in motion, and i have to get going. i'm glad that i know she is in good hands though, so it will be ok. the Hotel is a wonderful place for her, we have been so lucky.
i will be stateside by the end of June. yikes. i've been in the "Margi bubble" for awhile now, the US will be another shock again.
so now i will be one of the blog watchers waiting for updates and info!
Saturday, June 10, 2006
Lucky me: I own three beautiful Margi collages, and have found myself, these last few months especially, in silent meditation and prayer in front of them. Now, I will get to see the inspiration for "Deluxe India Rose" and "Pencil Road Collage" and take a look at the new work Margi has recently begun.
Penelope's e-mails were invaluable; full of all the practical information I needed to properly plan my trip, while thoroughly answering my many questions. I hope she had a smooth journey home.
Carolyn and I will cross paths for a day; she will be there for chemo #6, and I will arrive just as Margi is ready to leave Delhi for the north. Somehow or other, I will do my best to keep up with Margi, the intrepid traveler and adventurer.
Wednesday, June 07, 2006
It's been a lovely and rich time for me here. I will think about these three weeks for a long time. Here's a poem written in the first few days of being at Pema Thang Guesthouse. It's based on a partial fallacy (if you look really, really hard, you can see that the blue prayerflags on the horizon actually do still have some words on them, albeit very faded), but I stand by my false premise.
All the words have drained
from blue prayerflags
encircling the guesthouse.
Faded by wind and rain,
they move beyond description.
Line ends tethered to the roof peak
suspend pink yellow green
sheets still wearing pleas,
but on horizon line
turquoise pages float
blank and eloquent
before pines, misty valley.
Wednesday, May 31, 2006
We spent some quiet time on her favorite rectangular rock slab above the cascades, listening to the water, then visited her friend Aju at his chai shop nearby for a cup of delicious extra-ginger chai.
Today began sunny, then turned to early afternoon rain, lightning and thunder. I've just been out walking around the temple grounds, now that the rain has stopped, after a morning of writing in my room.
It's beautiful here, and we're having a good time, and Margi obviously thrives in this environment. She still has some days of weakness and illness, with the aftereffects of the chemotherapy and general bodily depletion, but she also has many very good days, like yesterday.
Sunday, May 28, 2006
Just when I was sure I’d done a good job and could resume (okay, begin) my letter—this magpie plucked some kind of large (grape-sized) berry from the tree to the right and carried it, with such expertise-- by beak, to the green netted roofing below my balcony. There the bird proceeded to roll the object about on the woven tarp while prodding with the point of it’s bill in order to break it open—then it poked at the seed and alternately wiped the sides of it’s bright yellow-orange beak on the netting. This prrocedure was meticulous and complex and I’m sure you’ll understand that if I’d glanced down even for a moment to the pen (which I admit was still sitting idly upon blank paper) that I might have missed a very important part of the process that the magpie used to negotiate it’s prize. I can tell you from experience that this task also required full focus, as well as the self discipline to resist almost-certain distraction caused by the display of the magpie’s two, extra-long and so-blue tail feathers, both tipped in white as if the bird carelessly dipped its signature feature into a bucket of bleach. And then there’s the weight and fall of these showy accessories that look slightly too heavy for flight and yet somehow still elegant.
So now here I am thinking of you as always (really, I imagine you are here at my side assisting in the observations) and finally my work is done and I’m ready to write to you about chemotherapy#5— (I have the pen in hand) but wait-- the blue flycatcher has arrived...
Saturday, May 27, 2006
After walking around the temple grounds on the hill below and opposite the guesthouse yesterday afternoon, and having dinner at a restaurant not far from Pema Thang, we separated with the idea that we'll meet up for dinner tonight.
Those of you who have been here know that if Margi is walking all the way to the temple grounds, and up and down the steep hills without trouble, she's doing just fine. She's eager to get back to making collages, and in fact may have started that today.
I now refer to where we are as "Dorlindia." Margi and I became friends at Dorland Mountain Arts Colony 13 years ago. We've agreed we'll have plenty of separate private time in which to do our work. We also made a ground rule, though, that if she needs something at times we aren't planning to be together, she'll call me.
She looks great, she's eating well, she seems completely recovered from the bug that bit her just before we left Delhi.
Wednesday, May 24, 2006
However, now we are safely enconsced at Angus's beautiful house above the town, and after resting all day yesterday her appetite has perked up, she's looking much better, and we've even gone for two short walks together.
Day after tomorrow we'll move to the Pema Thang guesthouse in town, but for now we have an idyllic spot up the mountain, a good place to rest, rejuvenate, and read (the three rs).
Monday, May 22, 2006
well, i have just said goodbye to Margi and Penelope and will miss all the adventures that they will be having! it was nice to hear Penelope's reactions to India since i'm so used to the oddities (like becoming an attraction just because you're a foreigner)and the auto rickshaw wild rides.
i'm sure that Penelope will love Dharamsala as much as Margi does and will appreciate having the quiet time to write and relax after the few hot and busy days in Delhi.
i leave tomorrow morning for another town in the foothills of the Himalayas called Shimla. well, actually i am going to Dolanji, which is south of Shimla. it is the where the Menri Monastery is located. The Menri Monastery is the home of the Tibetan Bon (the indigenous Tibetan religion)and there is also an orphanage and school for the children. www.bonchildrenshome.com if you want to get more information.
i became involved with this group through my volunteer work at Pacific Asia Museum in Pasadena. Latri Nyima Dakpa Rinpoche, the administrator of BCH, has given a couple of talks at Pacific Asia Museum on the Bon tradition. so, i figured, while i was in the neighborhood (so to speak), i would visit them! i'm looking forward to seeing the town and their organization.
i am also hoping to visit Shimla and some of the towns in the area, but am leaving my plans open to see how it goes. Shimla was the summer capital of the British Raj and is supposed to be nice.
i will come back to Delhi when Margi and Penelope return and will be here for Chemo #6 and then will be flying back to LA.
but for now i'm back on the road. i'll be missing my traveling companions but am looking forward to getting out of the heat and congestion again and seeing something new!
In Delhi she stays in her room to rest and recuperate, and it's obviously good for her to do that here. It's true what I've been told: Delhi is hot, dusty and crowded. But I've had kind guides (Jennifer and Carolyn) to take me places the last two days. Jennifer flew home night before last. I was very happy to meet her.
This evening Margi and I depart on the night train to the town at the foot of the Himalayas where the train ends. When we get there tomorrow morning, there will be a taxi (already arranged) to take us up to Dharamsala. For the first few days we'll stay at the home of her friend Angus, then transfer to a guesthouse in the town. I'm looking forward to pine forest inhabited by monkeys, cooler weather, and natural beauty at Angus's. Carolyn leaves Delhi in a couple of days to visit friends at a monastery. We'll see her again around June 8, when we return to Delhi.
I've actually enjoyed - in a hot, sweaty kind of way - seeing some of Delhi, experiencing several autorickshaw rides (the drivers truly do believe they're immortal, and it's best for the passengers to adopt the same attitude), visiting the Red Fort and the Rajgat, being viewed myself as a tourist attraction (Indians kept sidling up at the Rajgat and asking to take pictures of themselves with me - something about my height, gray hair and fierce face, I guess), and having some wonderful Indian food. Most of all, it's great to see how far Margi has come since the diagnosis.
Monday, May 01, 2006
Saturday, April 29, 2006
New CA-125 number is 7.48 -- down from 903.18 on 2/19 and 225.98 on 3/14 then 20.4 just 3 weeks ago. Very good news.
Same day I had a fresh CT-scan which showed significant improvement in my ovaries & liver. The fluid that was in my lungs and surrounding my heart is gone.
Carolyn stayed the night and we awoke the next morning to the unique sound of 20 foot long sections of bamboo (scaffolding) being tossed from the top (4th floor) of the building past our window on the 2nd floor to the ground below. Each piece had it’s own special sound. Jen came with a packed lunch from the Nepali cook, Dilbahadur, at the hotel. He put a message on the napkin that said “Happy Nice Day” which we think meant “Have a nice day” like he has heard us say—but we like his version better.
As expected the decisions on the direction of treatment had to be made. The surgeons recommended treatment plan was to go in and do exploratory surgery to look for and cut out any possible cancer ‘seeds’ that may be too small for the Ct scan to show. The statistics show that women who have the surgery generally live cancer free 3-4 months longer than women who do not have the surgery. I have at this time declined the surgery and so my oncologist, Dr. Sandeep Rajan, is recommending a continuation of the chemotherapy up to 6 months which I am aiming for-- as long as the neurotoxicity factor in my hands and feet does not become severe enough to keep me from working or walking. Chemo #5 is currently scheduled for May 17th.
At this point I am feeling optimistic despite the fact that this type of cancer has a tendency to be recurrent with or without surgery. After the chemo I will be focusing on rebuilding my immune system to keep the cancer from returning. I look forward to this stage. It will be a lifelong process. I will of course also be monitoring my CA-125 levels all the while.
I’m told the statistical prognosis at this juncture is a 30 percent chance of living up to 5 years – that’s up from only 15 percent chance of a 5 year extension when I first arrived at the hospital. Will do my best to exceed the statistics as I still love life and have a lot of walking to catch up on.
So still and again—thank you my friends old and new—for helping me to get to this point. I’m so pleased to not be dead!— and am happy to be making art again—actually worked a full day today! Still bald as hell-- gotta henna tattoo on my head. Still skinny but not feeling so frail as before. Still and ever indebted to you all!
Thursday, April 27, 2006
Copies of the film I made about margi's work in Kathmandu in 2003 are now available. The DVD includes slide shows of her time in Nepal and her work and music from the film, available nowhere else. Price: $20 plus $5 for postage and handling. Proceeds to Margi.
e mail firstname.lastname@example.org for more details.
Wednesday, April 26, 2006
Monday, April 24, 2006
For those of you that made it to the FUNdraiser, we hope you had a lovely time. I can't wait to see the pictures and hear the stories.
Saturday, April 22, 2006
We went to McCleod Ganj today and circumambulated the Dalai Lama’s temple. I believe tomorrow is the last day of his teachings, but as we came close to the temple, we could hear him talking and chanting. So many Tibetan monks are here now with their burgundy robes on. Everyone who does not understand Tibetan is wearing head phones in order to hear the radio broadcasts in different languages. We went to visit an old friend of Margi’s who works at a beauty parlor and got Margi’s head shaved so that the remaining scraggles of hair are gone and then, we got MY head shaved so that she is not alone. My ears stick out a bit, but we are two of a kind. It was a fun experience and Margi is really really happy about it. She appreciates it exactly the way I thought that she would, which of course makes it worth all the odd growing out phases to come. Unfortunately, I can feel the cold more thoroughly at night without hair. I can’t stop touching my head. How bizarre that it is me. I almost feel as if I will wake up tomorrow morning and have the same hair that I woke up with this morning. We are keeping it a secret for the time being. We all think that it will be well worth the shock value and the look on Dad’s face when he comes in a couple weeks. Margi and I are having a race to see whose hair will grow back more quickly. I am afraid that I have a bit of an advantage over her… Brrr… I wish I had flannel sheets… Haven’t longed for those in a while! Another benefit to me having shaved my head is the fact that now Margi is associating the tingling and prickling on her head with the fact that she is bald and not the chemicals coursing through her body. Because, of course, I am having a similar experience.
I wrote this a month ago, but chose not to share it until now as we thought it would be fun to have a surprise waiting for Dad (Jackie) when he came to visit. It is warmer at night now and my head has become a big fuzzball. I am debating whether to go ahead and face the awkwardness to come or to delay it another month by shaving my head again. Either way, I am clearly winning the grow-out race. I wish that our hair would grow together, but I am confident that it is only a matter of time before she catches up. It is interesting to look back at the pictures. In some, all you can see is Rosie’s brown hand against the white skin of a freshly shaven head. With no face in the photo, the only way you can tell us apart is by the color of our own skin. Where she is golden, I am rosy. She has gotten a henna tattoo covering the whole of her head. It really is beautiful. Too bad it has been so rainy this past week. She hides the design beneath a scarf.
Wednesday, April 19, 2006
i am back in Delhi after a quick trip to Nepal to visit friends in the town that i was a Peace Corps Volunteer. it was nice to see that everyone was doing fine despite the political difficulties.
i met Jack at the train station early on the morning of the 18th. it was easy to recognise him since he was the only western face there!
we spent the morning visiting the Red Fort in Old Delhi. an impressive complex built in the mid 1600s by the Mughal King, Shah Jahan, the same King who built the Taj Mahal.
Jack wanted to do some gift shopping, so we braved the crowded, hot streets of Old Delhi and found everything that he needed.
a siesta was in order after all our shopping was done, so a cool airconditioned room was a welcome haven! yea Hotel Prince Polonia!
Jack's flight was later in the evening and after a whirlwind week in India, he was on his way home to familiar sights, sounds and foods!
i will head for the cooler hills again tonight and spend a few days in Rishikesh, the place made famous by the Beatles in the 70s. then i will be back in Delhi in time for Chemo #4 and join forces again with Margi and Jennifer.
so, until then.....
Saturday, April 15, 2006
So everything's underway for the party - thanks to Jeanie Lytle for stepping up with some needed assistance.
If anyone is interested in donating some refreshments please contact me (Susan) email@example.com, or Elizabeta (firstname.lastname@example.org)
I think it's gonna be a lot of fun and I know that's exactly what margi wants!
Friday, April 14, 2006
Secondly, I am finally completing to a high polish the film that I did with Margi in 2004, "Rangi Changi, the color of art". This -- I hope -- shows Margi at her best and just how she accomplishes those amazing works of her's. My hope is to have the film read on DVD to show at the FUNdraiser later this month.
I welcome suggestions now. Since it it is also a FUNDraiser, I propose to make copies of the DVD and sell them with proceeds to whatever Margi and her blessed caregivers deem worthwhile. If all goes according to plan, the DVD will have a 15 minute film, a slide show of images of Margi's work from Nepal and some music files of stray tunes from the film.
Do people think this is a good idea? Margi? If so, what price? $20 per DVD? $15? It's all for the cause. I'll ship a collection of DVDs to the gallery and have them available with me as well for the price plus shipping. All willing that is...
Wednesday, April 12, 2006
Now back at the Prince Polonia after chemo #3. Decided to do the 3rd round of chemicals as an in-patient since chemo #2 as an out-patient was a bit too hellish to risk repeating… It was a relief to see the familiar faces of the competent and friendly nurses from the 2nd floor who knew me from my initial hospital stay. Carolyn stayed the night and she was equally relieved to not repeat the out-patient scene.
My CA 125 (cancer cell) count which was 903.18 on February 19 and 225.98 on March 14th is now at 20.4— This is indeed good news since 00-35 is the normal range.
My 2 main doctors, Dr. Sandeep Rajan and Dr. Pawan Gupta, came up to my chemo room to deliver the news personally and I can say that they both had smiles on their faces. I, myself, would have done a set of triple somersaults if not for my concern that the IV line would get tangled.
The promising numbers moves up the date for making decisions on the direction of treatment. There will be a new CT scan on the 26th of April (is it really April already?), after which the Tumor Board (made up of 9 doctor minds) will discuss my case and come up with a recommended treatment plan.
I anticipate 3 possible choices of direction—
The textbook direction at this juncture that will most likely be recommended by the Tumor Board will be to do ‘debulking’ surgery. This means cutting me open to find and cut out any visible cancers that may be too small to be reflected in the CA 125 test.
The doctors are aware that I may not be open to this plan of action for several reasons. The main reason is that I haven’t seen convincing evidence that the surgery actually keeps the cancer from returning. I’ve heard from quite a few women who had the surgery only to see the cancer return in less than a year. That coupled with the highly invasive nature of being cut open and plucked apart seems to me like a can of worms best not opened.
The alternate recommendation will likely be to complete the 6 months of chemotherapy and then work hard on rebuilding my immune system so that my own body keeps the cancer from returning. I would consider this on a month-to-month basis as I have so far been doing. (My main concern is still to avoid the neurotoxicity factor that could destroy the nerve endings in my hands and feet.) This ‘systemic’ approach seems to makes more sense (than surgery) to me since we know that cancer cells were also found in my lungs and on my liver.
A third possibility would be to discontinue chemotherapy sooner before my body is further debilitated by the chemo-- and begin the work of rebuilding my immune system as soon as possible.
Lots to think about—but in the meantime I want you all to know that I hold you responsible for the promising numbers. Your incredible and steady support through this extremely difficult time was the only thing that kept me from losing all hope. It was not the doctors and certainly not the medicine—it was all the loving and caring thoughts you sent my way. So here I find myself, bald as hell, skinny and frail—but alive-- and surprisingly hopeful after a what seems a long and bleak period of time. I feel sort of obligated to do my best to make a full recovery in honor of your vigilance. I am indebted to you all.
Weather report numbers are not so promising—now 40 C in Delhi (F= c x 1.8 + 32)
Will be glad to get back up to the mountains of Himachal Pradesh.
Sunday, April 09, 2006
Oh, Margi wanted me to make sure you all knew that the fundraiser better be a FUNdraiser! We are all looking forward to hearing about it. In fact, April 26 is the next hospital appt so it will give us something exciting to focus on. Wish I could be there....
Carolyn is taking off for Nepal this evening to give us "family time". I think she's just scared to be more outnumbered by Scharffs than she already is! She is actually going back to visit her old Peace Corps village, just over the border and I am insanely jealous. One day...
Saturday, April 08, 2006
I hope you all can make it!
Thursday, April 06, 2006
to have while we are here.
Margi received a really nice letter this morning from a fellow artist and ovarian cancer (stage iv) survivor. She uses trash for her art as well, so it was a nice connection to make and very uplifting as she told how she underwent 10 chemo doses (same as Margi) and has now been cancer-free for 9 years.
Think of Margi in the next few days as she feels the effects of chemo #3.
Wednesday, April 05, 2006
we celebrated Jennifer's birthday with a song, chocolate birthday cake and presents. the other passenger in our car, a Indian man from the army, enjoyed the festivities as well. it was an unusual trip in that the car that we were in was nearly empty! unheard of in India!
but we are back to the Hotel Prince Polonia and it was like coming 'home' to familiar, friendly faces and the 'hood'. the heat and pollution is still unpleasant, almost unbearable, but at least we feel welcome here.
Margi will be going to the hospital tomorrow evening and will stay overnite rather than go as an outpatient. this way she will have the same nurses that she felt comfortable with the first time and the labs can be done in the morning before the chemo treatments. it will reduce some of the anxiety in an already anxious situation. both Jennifer and I will be there for the 'chemo party' and she has also invited her Delhi friends to come and help take her mind off the fact that she is doing this. she'd rather be laughing than thinking about what she is doing, or more acurately, what the chemo is doing.
we'll have a couple of days post chemo to recuperate and then Margi's brother is flying in. i'm sure we will have more adventure stories when he comes. but for right now, it's lay low, stay out of the heat and do the chemo thing!
Tuesday, March 28, 2006
Make it small and light as her bags are bursting at the seams. The exception to this is Noni juice or OPC (available through email@example.com) 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
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
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 firstname.lastname@example.org . 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
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!
Sunday, March 19, 2006
Friday, March 17, 2006
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.
Friday, March 10, 2006
morning 'Weekend Edition' show. Here is the link to the Web piece we'll post
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
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.
Monday, March 06, 2006
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.
Sunday, March 05, 2006
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
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
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.