Tuesday, February 26, 2013

The Taj and a hospital visit in Delhi

Hi everyone, so i've finally hit my wall and ended up in a hospital in Delhi last night. Don't worry I'm ok. I had a fever and am supposed to go if it gets over 100.5 because if my counts are too low I cant fight off an infection. I'm so surprised how nice the hospital was. I was treated with kindness and seen right away. They gave me fluids, did a chest x-ray and gave me antibiotics and a prescription. Terri and the Sikh, Vicky accompanied me and stayed by my side the whole time. I have so many friends who have never visited me in the hospital which is the lowest most depressing, scary place to be and two people I barely know stayed with me for hours in the middle of the night. Terri read The Alchemist to me and joked around while I lay in my hospital bed nervous as fuck that the chest x-rays were going to show that my tumor had doubled it's size or something. The doctor even commended my spirits in still coming and volunteering in india after my cancer had spread. I learned a lot talking to Vicky about his life as a Sikh and his arranged marriage with his new wife. And how long his hair is under his turban. He took control and asked the doctors, who were all so nice, questions. The day before he had taken us to the The Golden Temple where the Sikhs in Delhi go to worship. It was beautiful. Next we went to a Hindu temple and I was blessed and asked Lord Ganesh to remove obstacles for me. I doubt a lot of westerners get the opportunity to witness this. It was amazing. The rooms were made of detailed metal, intricate carpeted floors with beautiful statues and flowers to worship at. I've never seen anything like it. I'm really loving the culture in India. There are 30 million different gods! I'm mesmerized by the rich culture and how beautiful everything is and how everything has a story, a meaning, and is symbolic for something.
During the weekend we went to Agra to go to the Taj Mahal. Originally, I hadn't really come to India to see the Taj. It didn't have a significant meaning for me. At dusk we first walked down a small dirt road to see the back of the Taj across the Ganges. Seeing it and learning how it was built purely to express the love and beauty Mughal emperor Shah Jahan had for his third wife Mumtaz Mahal after she died during her 14th childbirth. Looking at it from the distance it really looked surreal. It was so delicate and floating like a mirage or a painting. Right next to it was a Ghat, a ceremonial cremation place one of the only ones to be blessed by the Dali Llama. It was very intense for me to see such a beautiful building that represents love with death happening at the Ghat right next to it in such a spiritual beautiful way. I could see the bodies smoke over the ganges. It's actually the closest I'll get to a Ghat because only men are allowed. They believe that women are too emotional and their crying will scare the spirits into staying in their bodies. I really didn't expect to be touched the way I was at that moment. I think it hit me that I made it to India and have really experienced so much here. It is hard to explain. Friends who had been here told me india is unexplainable and it truly is. No matter what I say about it, unless you witness the culture yourself, its just not justified.
Poverty is not as shameful here as it is the west. People are proud of their little hut in the slums and take care of them. They appreciate what they do have instead of always being unsatisfied and wanting more like everyone is the USA. After my rediagnosis I truly don't care about money anymore. Its nice to have, but all you need is your health to be happy. Trust me, I would give everything I own away just to have my health back and a chance at a future. I've also very personally seen how money can change a person and how shallow they become. People have such pride in their beliefs and culture here. Art, dancing, the way they dress are all so rich and so beautiful. Everyone is so kind and caring. Everyone smiles at you and says Namaste. Its amazing to me that they actually like tourists and not for economical reasons.
The day after seeing the Taj from across the Ganges we woke up at 5 to actually go to the Taj Mahal at sunrise. We were surprised with horse drawn carriages at our hotel to take us to the Taj. It was huge and everything you here about is true. The detailing is so intricate it almost looks like its made of paper. Depending on where the sun is, changes the lighting of the whole thing so much. I still have till friday and feel like I will leave a changed person. I know it sounds cheesy but after the things i've gone through and seen, not just India, but cancer and hospitals, hope and heartbreak. I hope I can come back someday. I think everyone should come here and leave a better person.

Tuesday, February 19, 2013

Teaching Art in the Slums of Delhi

My Job Placement is at the Vidya Okhla School in the slums of Delhi.   
I was kind of nervous before we went and knew I would be seeing things really outside of my comfort zone.  But my whole life is outside of my comfort zone that I wasn't too nervous.  I'm pretty good at going with the flow with these sort of things.  When we got to the slums there was raw sewage and trash everywhere and we had to jump over a ditch of mud and a brick wall there were buliding in front of the school.  The school is tiny about 5 small rooms and they dont have much. The kids sit on mats on the ground,  these kids have nothing, wear the same thing to school everyday but have the biggest smiles on there faces.  When we got there they all jumped up to there feet and said in unison Namaste, Madam!  They are all there by choice, school is a privilege.  They  want to learn and are happy for any kind of attention.  At recess they crowd around you like you are the Beatles and show you their secret fake tattoo collection and how to use their toy tops.  They smile at you and and just want you to smile back.  I've never seen anything like it.  I used to teach rich kids in Manhattan and they were all for the most part pretty  jaded at a young age, didnt like playing anything besides video games, and weren't as friendly,  happy or as smiley.

 They kids here draw sometimes but don't have a normal art class so they were very excited. The first thing I had them do was draw something they saw on there way to school but they all just drew what I was drawing.  It's hard because they know little english and I know little hindi.   I'm basically on my own but they are truly just happy for attention.  I have all boys 3rd, 4th, and 5th grade, theres another teacher but she doesn't know english that well either and just sort of pops her head in and helps pass things out so its all up to me.  Next we did blind contour drawing where you draw each other without looking down.  They thought this was hilarious and couldn't stop laughing at how their drawings turned out.  Next we painted and I showed them how to make purple, orange, and green and colored them in.  They knew their colors in English  pretty well.  When they were done they kept showing me their drawings over and over again. I drew some regular drawings of a few of them and they were so excited and kept them.  The two women teachers asked me to draw them too and everyone crowded around me while I quickly did their portraits.  They were so excited to have them done as well and me, very flattered.   I can't wait till the end to take pictures of all of them to do some paintings.  I wasnt prepared for how exhausted I was after the last class.  I had to be on and talking the whole time and am so not used to that but it is a very fullfilling exerience.  By the time we left the wall they were building in front of the school was much higher and they had to get a table for us to jump off of.  I wonder how high the brick wall will be in front of the school tomorrow and how we are going to get in .  

I'm in India!

I made it to India! My 14 hour nonstop flight on Air India in coach was actually not as bad as I thought It would be. I watched a lot of movies that I normally wouldn't that were pretty good like Looper and made friends with the indian couple next me. I decided last minute to wear my wig as I noticed hairs on my pillow falling out. Thank god I did because now its really falling out and getting every where. I broke down for a second pulling it out in front of Dierdre and Chris but they were so sweet and it was just a moment and they both understood how much it sucks. This time is just a lot sadder to me. I was just getting used to my new short do. It symbolized rebirth, new beginnings, health, beauty, and the future. To lose it this time really breaks my heart. I haven't felt like my true self in so long. The loss of it symbolizes other darker things that I don't like to think about. I even wonder if I'll ever have hair again. I'm probably going to borrow Hal's clippers and let Terri shave it. I would even let them film it. I just don't want to be alone this time.
Enough about my hair, haha. After my rediagnosis I lost my enthusiasm about this trip and about, well, everything. But as I was sitting in the airport with all the Indian people I started to feel excited for the next two weeks, for the adventure. I have been through the worst shit possible in the past 2 years that I'm really not afraid of much, anymore.
When I finally arrived in India I was given a key to my flat and brought to meet up with Terri and the rest of the group. After meeting everyone, Terri pulled me aside to ask how I was doing physically and mentally. She told me to try to live in the moment and leave all the bad things in the USA for now. It'll be there when I get back, but for now enjoy myself. She and everyone else has made me feel ok about not pushing myself to hard, which I am known to do. To give myself time to rest so that I can enjoy the big things I want to do here.
The next day we went into the city and I loved just being in the car and looking out the window and snapping pictures of all the beautiful colors and people and action going on. It is really easy to feel alive here. We went to the Lotus Temple which is a house of worship in the design of a lotus flower. We took off our shoes and sat. I said a prayer in my head to live in the moment, for Kaylin and Suleika, my family and friends and for my new friend Anjali who had passed away from Luekemia the morning I left for India which is where she was from and grew up. I went and saw her right before she passed in hospice and am thinking a lot about her here. She was a very inspiring person and although I am so angry and sad at cancer for killing her I am glad she isn't suffering anymore and hope that she is in a better place.
We also went to the Humayan Tomb. It is a huge beautiful building which was made for Mughal Emperor Humayan, commissioned by his wife, Hamida Banu Begum. I like that he requested to be buried next to his Barber. I guess when you find the right Barber you'd want to look good in the next life. I really wanted to take pictures of all the beautiful people as references to paint but felt awkward about it at first but I soon realized for the most part they enjoy it and actually will come up and ask to take a picture with you!! Ive mostly been asked by 15 year old boys but some girls too. So different than what I am used to. After the tomb we jumped out of the car to see the famous, India Gate and Rashtrapati Bhawan.
I am blown away by how beautiful the people are here inside and out. There colors and attitude are so different than Western philosophies. People smile at you and say "Namaste". They offer you Chai. They aren't rushing around on cell phones. We were told Indians live on Indian time, They get there when they get there. It seems they are more about respecting each other. They are taught that a mangy old dog could be god so treat everyone with kindness. That yes they will judge you like anyone else but it wont effect you relationship. They laugh a lot. It is easier to live in the moment here. It is a fast paced life here and the traffic is crazy but I think everyone knows they'll get where they are going and they take the time to have tea and savor the moment.
I'm really sad that I won't be able to stay for a month and go to Jaipur and Jaisalmer which was what I initially planned. I have to go back into hell/chemo when I get back. I am just happy I got to come to India at all and do feel less anxious and more at peace here. I am really loving the country, people, the beauty, and there philosophies on life and death. Also the food is amazing!!! I'll never be able to eat Indian food in New York again. We went to a great resteraunt yesterday. We also have some really great cooks and ccs indian staff who are teaching us Hindi and answer all our questions but are also interested about learning about cancer from us. Everything is so colorful and budding with life. I finally feel inspiration for paintings.
All the people in the group are really great and I'm getting to know everyone. It's a very eclectic group but everyone shares a bond of having been through hell. Terri has made me feel very good about not pushing myself too hard as I am known to do. I want to experience everything but will hit a wall of fatigue where I feel zombiesque. I just did chemo 3 weeks ago for a week. I need to remind myself that out of anyone these people understand that. They've made me feel ok about taking the time to rest. It's nice to be surrounded by people that recognize this.
Last night after a 3 hour nap and missing dinner, I awoke to a meeting with Bella the CCS director who is such a beautiful, inspiring Indian woman with a great sense of humor. She wanted to ask us questions about cancer as there is still a taboo here in India about it and just isn't something people talk about commonly and some still think you can catch it like aids. She wanted to know what it is like emotionally to go through it. I decided to break the ice as its obviously so currently in my life and has been. I have a lot to say about this bullshit thats trying to ruin my life. I told her it has changed every aspect in my life and stripped me of everything and the only thing that has gotten me this far is my friends and family. I told her that yes, my initial reaction was to be embarrassed. I too, thought this was something to worry about as on old lady and its just not true. I have seen and met so many young people so many children suffering, living with it, and dying. To be young with your body falling apart is the opposite of what life should be about and it makes EVERYTHING difficult. I told her I made a decision early on to be open about it partly because I couldn't hide it because my treatment took everything from me but also because I felt it was wrong that I should make myself feel like a lone freak of nature that was being punished. Living where I live in brooklyn as a 28 yrs. old (age i was diagnosed) everyone knows everything about each other. It was impossible to hide. I don't believe cancer patients should be made to feel like they have to hide it. What a horrible message to give. I felt so alone until I met other girls my age that were going through what I was too. That changed so much for me helped me get rid of my guilt, embarrassment and isolation. It also made me see all the good you can do for others and the world if you are willing to be open and vulnerable. She asked if we felt angry or enlightened. I said you feel both. First is the anger, depression, guilt and that never goes away but it's such a miserable way to live that you have no choice to get up and put one foot in front of each other, keep living, and you do appreciate small things more. Someone holding your hand, or walking down the street to get a drink at a bodega without any help, even. You experience love in a more intense way. You experience disappointment in more intensity too. You learn to laugh and find beauty in the moment because time is precious and you have seen hell. Death is always in the back of your mind but you cant let it control you or let cancer define you, or what's the point?

Saturday, February 2, 2013


hi everyone,

My worst nightmare has happened: The cancer is back and has spread to my lungs. I really lost it when I found out. Who wouldn't? I had a month off since radiation ended. That's it. One lousy month, which I unfortunately spent being pretty depressed. Getting thrown back into the world feeling like an outsider, not having a life at all besides cancer, dealing with the loss of a relationship during treatment with someone I realize I never even really knew. Part of me blames myself for the reoccurence on being so depressed and negative. I still had hope though and was trying to pick up the peices making appointments with schools, psychiatrists, swimming, and getting into my artwork. Trying to get back in the swing of the things and focusing on my upcoming trip to India.

When I got the news I completely crumbled, my parents sobbed, even my doctor cried. I have never experienced the intensity of such a heartbreak getting this bad news. My odds are now 50/50 and I have started chemo again. The hair I just started getting used to will be gone soon. I pushed chemo back two weeks to do a bunch of fun bucket list things before my body falls apart again. I immediately went to St. Thomas with my friend Vanessa to see my cousin Rebecca who lives there. She showed us the best time and we went swimming with dolphins in Tortolla, rode a boat all day to Virgin Guorda. Snorkeled in Saint Johns. I then flew right back to NY to go to my friends farm in Pennsylvania. There, I hung out with a lot of great friends. We went sledding, rode a Gator mobile, shot guns, and played sardines. They all gave me a card with money to buy a new wig which is so sweet and moved me to tears. Everything was a great distraction but my mind was somewhere else and I probably seemed very distant a lot of the time. I had a lot of anxiety about the anticipation of the upcoming week. I have never dreaded a week more than this one. Going back to somewhere I never thought i'd be again. Seeing my same nurses, getting my port put back in, which I had just celebrated its removal. The smell of the hospital and the noise of the chemo I.V. I thought I was free from this world at least for a few years.

Having a reoccurance feels a lot different then the original diagnosis. Everything was new then in a way, sickly interesting, learning about cancer, chemo, radiation, and how everything in your life changes. I always had hope though and figured I just had to make it through this hell and I would get my life back if I did everything, I was asked. Now I cannot stop thinking about death and how it is a huge reality whether I like it or not. It really is a horrible, surreal way to live and I have been having a lot panic attacks. It has been very helpful to be around people and friends this time. It's when I'm alone that my mind can get very dark sided.

So now its friday and I've done a week of the new chemo regimen which is only four hours a day not 8. So far my body is tolerating this poison a lot better. I just want it to work, though. That's all I want. I don't care about anything else. For a week that I thought was going to be the worst in my whole life I've actually spent a lot of it smiling and laughing do to the amazing people in my life. I've been staying in a hotel next to Mass General and have actually had a lot of fun visiting with friends and having visitors. I've been pleasantly surprised and very impressed by certain people. It has totally helped my mood and means the world to me. I also have been spending my chemo sessions in a chair, instead of alone in a room, with a few other young friends that have Ewing's sarcoma. It really makes the time go by faster hanging out with them and commiserating.

I'll be coming back to New York because my life is there and I need my friends and I need to paint. I have a few close beautiful and amazing cancer friends who have quickly become sisters to me all whom have there own struggles. It helps more than anything to be around people that are forced to face their own mortality at such a young age too. It is so wrong and I don't know if ill ever be able to come to peace with the unfairness of it all. I miss being care free. I never will again.

I'm still allowed to go to on the India Documentary trip in two weeks but only for two weeks not a month. I hope it will help my morale and inspire my artwork. I can't help but feel like a sinking ship and that I really need a miracle. I wish I had caught my cancer before it went to my lymph nodes, I feel like that is why I am fucked. I'm trying more than ever to live in the moment and be spontaneous but sometimes its hard to not feel angry at the world. I am trying to focus on the fact that whatever happens I am still here now.

Anyway, I'd like to thank all the heartfelt messages I've recieved and that have literally blown my mind. I'm sorry for the delay in response I've obviously been very busy, but will get back to all of you. xox