Saturday, April 29, 2006

Chemo #4 Update

Chemo #4 update—Now back at the Prince Polonia after chemo #4 in Room 215 of the brand new wing at Dharamshila Cancer Hospital. On day #1 (April 26th) we celebrated Carolyn’s B-day in my hospital room—Jen rounded up a delicious chocolate cake complete with ‘digital’ candles numbers 4 & 9. Naturally we shared the cake with all of our favorite hospital staff—Jinsi & JoJo the nurses (JoJo is a man… and yes we sang him the Beatles song—but with new lyrics) and Bajaj the dietican who always wears stunning colored kurtas under her white coat—this time bright orange with dark green print.

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!

Love,
Margi

Thursday, April 27, 2006

Margi DVD available now



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 danielglak@gmail.com for more details.

Wednesday, April 26, 2006

FUNraising pictures!

Thanks everyone who joined in the festivities Sunday night. It was really good to get to get together.










Monday, April 24, 2006

Back in Delhi

Just a brief note to let you know that we are back in Delhi and headed for the hospital tomorrow for the ct scan, followed by chemo #4. We will be celebtrating Carolyn's birthday in the hospital.

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

Old news for some



March 23

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

a quick stop in Delhi

hello!
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.....
cm

Saturday, April 15, 2006

FUNdraiser for Margi

Hi all -
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) sebarnet02@hotmail.com, or Elizabeta (elizabeta@overtones.org)
I think it's gonna be a lot of fun and I know that's exactly what margi wants!
Susan

Friday, April 14, 2006

joy and a little business

First of all, on behalf of the entire Margi Scharff community, for that it what it is, can I express joy and thanks to all upon and above this terra firma who/that have helped our friend along. Much more friendship to come Margi, many many years of it.

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...

Daniel Lak
danielglak@gmail.com

Wednesday, April 12, 2006

Numbers

Chemo #3 update—
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.

Promising numbers—
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.

Love,
Margi

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

One foot in front of the other

So, chemo day has come and gone. The day itself went really smoothly. The doctors and nurses love her! We took some fun (yes, fun in the hospital!) photos that we will share soon. Margi is feeling a bit weak today, but yesterday, she had a great day. I think that makes today a little bit harder for her, but I am just glad that the good days so strongly outnumber the bad. In fact, we heard some really encouraging news from the doctors. HOWEVER, I am going to make you wait to hear it from Margi. ;) Don't be mad--I promise it's worth the wait.

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

Fundraiser for Margi (click here)

Just a heads up to all - Elizabeta Betinski of Overtones Gallery will be hosting a fundraising event for Margi on Sunday April 23rd from 7 - 11 pm. Overtones gallery is at 11306 Venice Blvd., Los Angeles CA 90066 t: 310.915.0346. There will be many of Margi's road collages available- including some from her recent journey. 100% of the proceeds will go directly to Margi to help defray some of the cost of her medical biils. ALSO - there will be special images and video directly from Margi herself in India.
I hope you all can make it!
Susan

Thursday, April 06, 2006

Countdown to chemo #3

Just wanted to let everyone know that we are back to the original phone number that Susan posted. (+91 9899508455) It's local for Delhi, so it's more convenient for us
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

back to Delhi

we arrived early on the morning of the 5th after a pleasant but uneventful (in comparison to the jeep ride to Dharamsala)overnite train ride.

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!

cm