One Week Down

I have finished one week of work. Delhi has experienced record high temperatures of about 120 degrees, and I have no AC at work. I'm still alive, kicking, and having a great time at work.

After one week at Adharshila, my Hindi has begun to improve. I can understand people better, and I am having an easier time tutoring students. I wasn't sure if my Hindi could even improve as much as it has-- hopefully, I will be fluent by the end of the summer.

The kids have been teaching me vocabulary, and they love laughing at/correcting my mistakes.

I love the kids. When I was a camp counselor in U.S., I encountered so many bratty children. I haven't met a single brat. Every child is so grateful for everything that he/she has. The center's students never cease to amaze me-- they are the most optimistic, forward-looking, self-motivated, respectful, and enthusiastic people that I have ever met. It's hard to accept that these people, no matter how hard they work, remain trapped within their socioeconomic barriers.

I get so frustrated because India has so many infrastructural problems. India's come a long way since colonization, but everything has something wrong with it-- police are corrupt, media sucks, no middle class, inadequate sanitation, disease, disease, disease, corruption, corruption, corruption, riots, class barriers.

It's hard to accept that it could take decades before India's poorest experience lifestyle improvements-- keep in Mind, India's poorest includes 70% of the population.

No matter how forward looking Adharshila's slum remains, students are only taking baby steps. Quality of education is abs. abysmal, and kids don't receive the attention that they need.

I think that babysteps are important though-- job training to one slum yields log-term improvement through subsequent generations.

will finish later

First day of work

My first day of work was today. I actually did not go to the center; I went to one of the trustee's home. Apparently the two trustees fund most of the organization from their own pocket money-- amazing! The organization is being painted, and my bronchitis is so bad that I may have imploded had I gone today.

I talked with the trustees about the organization, and the amount that they have done is really fantastic. They have somehow tackled vocational training, job training, nutrition awareness, tutoring, childcare, legal awareness-- everything! For such a small group, they have done so much.

Also, there are so many benefits to working with a small group. In addition to fulfilling their needs, I can work on whatever I want! One thing that I want to do is conduct interviews with people in slums to look at changes in employment trends over the last few years. As you know, India's getting a ton of money from its IT industry. As you also know, India's economy has boomed in the last three years. Apparently, the organization has data from three years ago, so I am going to update this data. I have to write a paper for CMC, so I'm really excited to have a project that can help the organization and that I'm really interested in. How cool!

In July, when India's schools starts, I will also make field trips to schools in slums. Right now it's going to be planning, planning, planning, and spending LOTS of time with children. I've been brainstorming lots of games to play with them!

I actually suck at interacting with children. One thing that I think will be to my advantage is my limited ability to speak Hindi. When I was little, I felt so excited to teach someone something. I'll ask the kids to teach me Hindi (since I can understand it). This will be awesome because (1) I will bond with the kids (2) I help the kids' self-confidence and leadership potential-- since they are kids in slums and (3)I will learn Hindi-- Win, Win right? Apparently, the kids get really excited when people overseas come to visit.

I also found out that some UN representatives will be at a reception for the center on June 22! How cool! It's amazing how this tiny internship is going to evolve into something so big. I'm so excited for this.

I'm really excited for my paper and my visits to the slums.

Today, for the first day in months (since I started losing the ability to walk), I'm beginning to feel like myself. I've been happy, but I've been feeling really worn out, exhausted, and uninspired about my professional future. I used to dream for big things, but with the surgery, radiation, and horible pain, I felt really worn down. The tumor really improved my friendships and personal life, but it killed my self-esteem and motivation. I felt like I was losing opportunities-- scholarships, majoring in what I want, and studying abroad. I feel like me again-- I feel like one day, I can do great things. I feel like I can dream big again.

Tumor Blog is now an India trip blog

Okay, so I've moved on from my tumor, and in a twist of circumstances, my ependymoma blog has now become an India trip blog. I thought of starting a new blog/account, but I'm really just way too lazy.

My trip to India has become more insane by the day, and I thought it would be worthwhile to share some experiences.

Oh like this one: today I found out that I will, for the rest of my life, have access to my family's ancestral home in the Himalayas. My parents never bothered to tell me or take me there. I'll be going for the first time this July.

I also met my grandfather's brother who spends 6 months of the year doing geological studies in the Himalayas. His geological studies have motivated him to... get this... write a book on the history of time.

My family's really cool. It's really too bad that my parents never told me, especially since now everyone is either dead or going to die soon.

Let me backtrack a little bit.

For those of you who don't know, I'm in India for the summer. For those who don't know why, I'm here because I am unable to spend a semester abroad (as I had originally planned) I received a scholarship from my school to volunteer for an organization. www.adharshilatrust.org I start work on Monday and from what I understand, I will be assisting a legal awareness program. It's 114 degrees here, and I will not have air conditioning at work.

This is my fourth trip to India. I have not been here in almost 10 years. For those who would like the short novel, I have copied and pasted exerpts from e-mails that articulate my experiernces thusfar. Again, I am lazy. Please pardon the (lazy and) choppy language.

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I'm having a great time here. At first, I was really distraught that this would be my study abroad experience, since I'm not taking new classes or going to a new place. But now, I've realized this is probably better than a school structured study abroad experience, since I will have to learn how to function in India one day (I will have things to take care of here), and since I look Indian, I sort of get to experience the society as an outsider/foreigner from the inside. It's really challenging , scary, and uncomfortable, but that's what a study abroad experience should be... right?

I'm also trying to re-establish fluency in Hindi. When I was little, I was fluent, but my dad yelled at me and told me to stop speaking Hindi because he was scared that I wouldn't learn English... I had really ignorant teachers in preschool who thought I was learning impaired because I confused consonants between the two languages. That's actually why my parents sent me to private school... everyone said I needed "special attention" because of my speech "impediment."

My parents didn't know until a couple years ago that I could understand Hindi almost perfectly. I've only been here a couple days, but my speaking abilities have improved... I expect to be fluent by July. You only really need Hindi to talk to people at markets and servants. Most people here speak English-- all the street signs, billboards, and stores use English. Companies use English, and my family speaks to me in English, and to one another in a combination of Hindi and English. I think it would be pointless to learn how to read or write it.


I've been to India 3 other times, and this visit has given me the biggest culture shock, since I'm older & look Indian-- strangers/people at markets/everywhere expect me to be more Indian than I actually am. I was at a restaurant last night, and I explained to the waiter how shocked I was by how spicy my meal was since he told me it wasn't spicy at all. He didn't get it until I told him that I'm from the U.S.

I'm going to have some(CMC) friends in Delhi by the end of next week, so I'll have a better idea of what people our age do here. I have 2 friends who will be 15 minutes away and 3 friends who are like 40 minutes away. So far, I've been hanging out with some family friends-- two brothers who are 20 and 25 and their female cousin who is 19. I'll be meeting up with the big CMC group next week. I'm going with them to Agra, and they will be having dinner with my aunt, who is going to be giving a talk to them.

I haven't begun working yet... I've pretty much been shopping, eating, seeing family, and letting my aunt spoil me. If you have money, the quality of life here is just spectacular. Everything's really really cheap... like the nice movie theatres cost like 3 dollars. Every household has at least 1 or 2 "servants," (they do everything for you... I walked into my bathroom the other day, and one of the maids was cleaning my hairbrush... they also iron my underwear... it's really weird). It's been really hard for me to have servants here. I'm really big on socioeconomic equality, so it's hard for me to have people doing things for me. Some households treat their servants like crap (India is an extremely class-conscious society). In my house, they are paid very highly and treated like family.

When I was little, I would play with Kanchi (one of the servants who has been with our family for over 20 years), and she has gone shopping with me. The maids get to watch TV when they want, and Kanchi is going to teach me how to cook. My dad gave my aunt a really nice cell phone a couple months ago, and my aunt just gave it to Kanchi and pays for Kanchi's cell phone plan. Kanchi came to work with our family when she was 18. Some people work as servants when they are as young as 8. Kanchi and Neela (the other servant) don't really seem to mind working for my aunt. I always forget to take my pills, but Kanchi and Neela really always remember for me, they always turn on the AC or fan for me when I fall asleep in a room randomly, and they always insist that they clean up after me and my aunt. I try to do my own dishes/clean up my own mess, and they don't let me. It's really weird.

Poverty here is pretty insane. It used to be worse, but New Delhi's been getting a lot of money and new jobs have been created. The rich are getting richer, and they want more services like street cleaners, drivers, maids, security guards, retail, etc. But New Delhi's still pretty dirty with a lot of slums. I'm working with an organization that specifically helps people in slums, so I'll have a better idea of what Indian poverty entails... and when I start work, I will probably feel even more horrible about how spoiled I am. There are still a ton of beggars and even in my aunt's extremely wealthy neighborhood, there are bum shanties and people sleeping on the streets....right outisde.

It's really weird. I hear that other parts of India are much worse. I'll be going to Mumbai in July to visit my family on my mom's side. They aren't as wealthy as my aunt, so I'll have a better idea of how other people live in India. Also, CMC has sent a group of 13 students to India for 2 weeks. I'll be going with them to Agra (4 hours from Delhi), which I hear is a bit more conservative than Delhi.

I don't know if you know, but there are a lot of cows on the streets of India... however, they are more or less being transported away from the cities. There were more cows 10 years ago, but they cause a lot of car accidents. There are also monkeys everywhere, but I haven't seen any yet. I saw a lot more when I was last here.

They have KFC, Baskin Robbins, Subway, McDonald's, Pizza Hut, Dominoes, and all sorts of the same retail stores that you have in the US here.

Halfway .

I'm blogging again because it's so important that people know what happens when you age 6o years in three months. A rare disease never disappears, even when it's cured.


It's been a while, hasn't it? It's been a while because I don't have time to "blog," and so many things in life are more important than internet-journaling. Even though I've been silent, my tumor is far from gone.

My tumor's gone is the sense that it has been extracted from my body. Ironically, now that it's gone, I'm feeling its effects at full force. The aftermath of a rare disease includes ups, downs, ups, downs, ups downs in every aspect of life.

It's March 2007, and I've reached a lot of halfway points with few resolutions. Two months ago, I couldn't decide whether to pursue radiation. Two months later, I am halfway through 33 treatments at Loma Linda. I spend half my "free time" at Loma Linda. The hospital has a close-knit community of prostate cancer patients. I am half their age. I am half of half their age. I spend half my free time with them, and they are half my friends... And halfway through treatment, I am half-reluctant to describe my condition as a "disease".

I'm also halfway through the semester and nearly halfway through college. I'm halfway between sad and happy... it's impossible to decide which one I want to be. I'm happy because I've met so many great people and I've found profound love in unexpected places. I've discovered within myself, a capability to love in ways that I've never experienced. I can't articulate what I've discovered; I can only stress that this love exists. I love life. I'm so thankful for being as lucky as I've been. Every day, I meet children with advanced forms of cancer, and I'm thankful to have met them-- they are so strong, heroic, and the best people I've ever encountered. I admire these children, I'm thankful to not be one of them. But I wish I could be as strong as them. I wish I could be strong enough to accept how good things are for me.

I'm so ashamed to say this--as lucky as I have been, it hasn't been good enough for me. Everything could have gone better. College could have been better. Treatment side effects could have been better. I could have been happier. In my head, I've reconciled how good I have it. I tell people that things couldn't be better. I tell people to be optimistic. I tell people that I'm so happy because things could have been worse. Surprise, I'm a hypocrite-- A happy-sad, spiteful-thankful, strong-weak, old-young, social-antisocial hypocrite.

I started updating my blog because it's hard for me to talk, but I need for people to listen. I don't request empathy or sympathy, but I need for people to understand what it's like to live a "normal" college student life with a rare disease. It's so isolating.

When I last updated this blog, I spent my free time sitting on my living room couch...alone. In the dark. In the last two months, I've been reintroduced to the "social" world, and I've realized that I'm no longer the "social" being that I once was.

I have no urge to party or shop or hang out or do what young people do. I feel like I've aged 60 years-- physically and emotionally-- in two months. Intellectually, I lack insight and retrospect to assess my experience. I'm old enough to have used a walker, but I'm still not old enough to give myself the "right" advice.

I feel like I've lost what might be my most important "social" year of school. I lost my first semester altogether. Now, I spend all my free time at the hospital or catching up with homework, etc. I came to college expecting profound friendships, ridiculous experiences, etc. I still want that, but I fell halfway behind everyone else.

I've come, gone, and returned without finding a niche or leaving my mark. I wonder... is this the rest of my life? Perpetual transience? Transient paradoxes?


This tumor does and does not exist. For forever, this tumor will and won't exist. I'm recovering, but will I ever be recovered?

What happens when you're 20, and you've aged 60 years?

I'm doing ridiculously well! But I'm still unsure whether I want to get radiation.

Proton beam is much better for me than photon. Two institutions in the US offer proton therapy... one of which is about 30 minutes from CMC! I'm going back to school! Even if I only take 3 classes this semester, I will only be a half-credit behind. Even though I dropped a semester, I'm still a half credit ahead (one class = 1 credit). I doubt I'll have to drop any classes for radiation... I spent four years of my life in excrutiating pain... I still earned awesome grades and did everything that I loved. In the last two months, I wasn't able to walk, but I was earning nearly all As (it's a shame that I had to drop that awesome GPA potential).

I found out today that my school's history dept. has selected me (with 3 other students) for an all expense paid spring break trip to India. I've been to India three times, but I'd like to challenge my family-visit comfort zone and explore the country from a more outgoing perspective. This will be such an amazing experience, and I feel so fortunate to have been selected. Now, I have to get strong and hope this tumor grows back after march. I actually considered withdrawing my application from the program. Then I realized that I cannot live in paranoia and fear. I have to challenge myself, take risks, and put myself out there. I cannot fear a congregation of microscopic cells. Sure, they are part of me (and attached to my nerves), but I am bigger than them. Even when the tumor was 8 inches, I was still bigger and stronger. This experience will never hold me back. I just gotta do my thing (thang).

As far as my recovery...

I've had about 3 physical therapy sessions... and each one gets better. I'm gaining some flexibility (and very little strength). After PT this morning, I walked up a flight of stairs! I was so excited that I could do that-- I didn't think I would. In the months before my diagnosis, I would drag myself up stairs. I lived on the second floor of my dorm, and I found it so painful to get up stairs. I was so excited this morning-- I didn't even hold on to the hand rail! I'm not religious, but I feel like I've lived through a miracle. I've recovered so much, so fast, in such a short amount of time... Before my surgery, I wasn't able to run-- I couldn't get my legs off the ground. Maybe once I've done some more PT, I'll be able to run again... and bike.

so... who wants to go hiking this Summer? I went hiking/running all the time this past summer. It's ridiculous that I was able to do that... considering how much pain I was in.

Grey's Anatomy

Myxopapillary ependymoma patient on Grey's Anatomy season 2 episode 5.

Ridiculous... people get these in real life!

I can stand on my tip toes!!!

Today, I went to the doctor because there was an infection at my incision site. Got some antibiotics, and they did a swab to rule out a staff infection.

Later this week, I have to get a (full spine) MRI to make sure there are no tumors in other areas of my spine.

That should be exciting.

I got a response from the neurosurgeon. He suggested that I wait on the radiation.
Coming from one of the top neuros in the country....


But he did suggest that I will need the radiation in the future.

I will have to see.