Monday, August 19, 2013

"LIMBO" 

  This painting was from Christmas Day last year when I had a Nuetropenic Fever.  This is when all your counts drop dangerously low,  that you can't fight off infection and a high fever occurs.  These were the worst.  When you have cancer you acquire certain cancer accessories, (cancessories?) that must be nearby at all times.  Ex: A thermometer, hand sanitizer, barf bag, pills, weed, etc.   Sometimes after feeling chills and taking my temp. I would actually lie and beg my parents not to call my doctor about having a fever,  because I would absolutely dread being admitted.  I knew that even though I had just spent the last two weeks in bed, sick from chemo,  that I would ultimately be sentenced to at least another week in the hospital.  That is the majority of a month,  sick in bed.  And every month,  the same thing. Alone in a room, where your days and nights are broken up by being stuck by needles and poked and prodded by nurses and doctors asking you annoying questions about everything, including what your poop is like.  lol.  

  I remember having to be rushed to the Er in the middle of the night,  shaking so violently,  from a 104 fever that 4 heated blankets could  barely warm me up.  I remember waking up, soaking in so much sweat,  that I could see the imprint of my body on the sheets.  Sometimes, my heart rate so high, and my blood pressure, scary low, I would get a headache from hearing my heart beat so loud.  It was then, I was convinced the end was near.  Feeling that bad, I sometimes would momentarily accept death because I just wanted a rest from all the physical pain. The worst was the utter loneliness of it all.  I remember how much that Christmas sucked and my whole family stood in the doorway of the hospital room, with masks on.   Watching the nurse take tubes and tubes of blood, as I shook under the blankets.  I'd be so anemic that my blood would pour out like water all over the place.  In those times,  I would realize how alien my body was to me, and how it did what it wanted to.  Much like a broken machine gone haywire.  

 I know that was the first time my sister saw how sick ( she was visiting from Cali) I was and it probably freaked her out a lot.  I wonder what my parents told her.  When one family member has cancer basically the whole family does.  It changes every one's lives.   I am lucky to have such a strong, amazing family.  I have needed them to be my rock, and they have gone beyond that.  I actually had a doctor tell me he had never had a patient with such amazing parents, and I believe it.  I remember being miserable,  and too weak to walk,  and my dad pretending to let go of my wheelchair in the parking lots.  I love my dad for his dad jokes and you really need to keep a sense of humor as much as possible, because this is life no matter how much it didn't go our way, it is still life.  We are all still here!   My dad is an Irish singer so his schedule, being pretty flexible, would take me to chemo everyone morning at like 6 am to mass. gen.  He was so popular with the nurse staff because he is just so rad!  If you've met him, you'd know. I've always been the eldest daughter and it is hard to show how weak I am to my brother and sister.  I guess that's one of things that I hate the most about cancer.  I have met so many amazing people who happen to have cancer and although visually appear physically weak inside are so fucking strong and inspiring.  I hate the idea of a poor little cancer patient as a victim.  Although our bodies are failing our minds are very strong.

 Unfortunately, I got these damned Nuetropenic fevers almost every time I did chemo last year.  During these fevers, I would have to be isolated for about a week and a half.  I often, was so sick,  I felt somewhere between life and death.  Sometimes,  I still feel like that when I am sick or how my whole life revolves around getting "better".  Everything else has been put on hold.  Sometimes,  I think I would rather be in jail.  At least then I would be able to think about getting out.  I used to think it would all be Temporary but its been almost 3 years since my diagnosis and I can't see a light at the end of the tunnel anymore.  I'd be foolish to do so after cancer has repeatedly slapped me in the face every time I get my hopes up about ANYTHING. 

  This past week I was reminded after having to stay inpatient again at Sloan Kettering, at how old it gets spending your days sick in bed at the hospital.  This time I wasn't nuetropenic but after continuous vomiting, a fever, and a sharp pain in my stomach I took a cab to the hospital to get some help.  To my surprise my doctors discovered I had Appendicitis!  I was sent down to get scans and while I sat in the wheel chair waiting, I prayed it really was Appendicitis and not a tumor in my stomach.  Hearing it was Appendicitis was actually a relief! At first I was told that I'd be going straight into surgery which I wasn't that upset about since I've been through so many worse surgeries in the past 2 1/2 years.  

  I'm going to count them for "fun": 

3 biopsies in left foot to find out if it was cancer and what kind.  I was awake for two of these where they removed bone and tissue from MY LEFT FOOT,  I had never been in so much pain as that second one and actually screamed and cried the whole way home.  

3 Port surgeries.  One to have it implanted when i was diagnosed, one to have it removed where i was told to celebrate because i was done with chemo...  One to have it re implanted after I relapsed and had to start chemo again.. Although that one hurt the least, it was the saddest. 

Pelvic lymph node biopsy where I was also awake and had a needle the size of a sewing needle stuck through my hip.  watching on the screen was pretty surreal.

Surgery on the back of left knee and left pelvis, where about 30 lymph nodes were removed.  This was a big like 9 hour surgery.  I basically had to learn to walk again right after and had tubes and bags of blood coming out of my leg for about a month.  no fun and really gross especially when the doctor pulled them out nice and slooowwww.

Surgery to have my ovary moved over!  Yes that's right, before I relapsed my radiologist suggested I move one of them over so it wouldn't get fried during pelvic radiation. 

In the end, I ended up, not having surgery for the Appendicitis and Colitis that I was told I acquired from Irinotecan (chemo drug).  My guts were all inflamed and I was treated with antibiotics and no eating or drinking for about a week.  I was put on a strict diet of just mouth watering ice cubes! mmmm.  After awhile I was allowed to have clear liquids.  Apple juice and broth never tasted so good!

  I am lucky to have had all the visitors that I did.  I had so many!  It made my time go by so much faster.  So if you came to visit me although I might have acted loopy because of the morphine, it meant a lot. I really have the coolest friends.  Also my mom came down again, and I don't know what I would do without her.  She is the most selfless, talented, and genuinely good hearted person I know and has been by my side in Nyc this whole difficult summer 

  I'm glad that all this shit happened before my art show and not during, because although I'm nervous to share such personal pieces , I am so excited to see the paintings (which I finished in the hospital) all together and see old and new friends all in one room.  I think its going to be a bit overwhelming but in a really amazing way.  It feels so good to have something to feel good about after constant sadness! There will be old college friends there and people who I've never even met, but feel like i know so well, because of their consistent encouraging emails and facebook messages.  It is so nice to have set a goal and actually accomplished it.  To feel a sense of control for once! This could very well be the biggest day of my life.  Who knows?  Although I don't look to far ahead anymore, hopefully this is just the beginning of things to come.  




Thursday, August 15, 2013



I was asked to answer some questions about my work for a New York/Brazilian Blog, Taxi Amarelo.   http://www.taxiamarelo.com.br Here it is in English!:








What has been the role of painting in these difficult days during you treatment?
  Painting these works has been an outlet for me to confront the reality of living in this cancer world that most people don't understand and don't like to think about.  I'm not much of a writer, so I express myself through my art.  It has been very therapeutic to tell my story through paint and really put it all out there, but also leaves me feeling very vulnerable.  I want the viewer to get a better idea of the reality of cancer and what it's like to live with it, like so many admirable people do.  I want other cancer patients to be able to identify with them and not feel so alone.  Cancer has an ungodly way of making you feel so utterly alone. 
                      Was it a natural decision to continue painting even after the diagnosis?  Also, You chose 
                      to paint mostly self-portraits.  How was that process and how did this choice happen?
  Before my diagnosis I had a studio in Brooklyn, where I painted large oil paintings of other people.  After my diagnosis I had to move in with my parents, get rid of my studio,  and couldn't really be around oil paint or turpentine because of the odor and toxicity.  My whole life drastically changed with that one cancer diagnosis phone call.  From then on I found myself feeling very isolated in this "cancer world".  My treatments have been absolutely brutal and many times I felt I was on death's door.  I found myself truly alone with myself, confronted with extremely tough and heavy thoughts that cancer threw in my face.  As my treatments continued, the less I could relate to my old friends and work.   
  I started using watercolors because I could paint in bed and they had no toxic odor to make me nauseas.  At first I painted weird little images from my heavily drugged brain, avoiding thinking about cancer and death as much as I could. I was using painting as more of an escape at the beginning.  I have always been a portrait painter and knew I would sooner or later have to paint a bald self portrait.  I had to.  Thats how this series started.  From then on I became more passionate on telling this story especially after my cancer spread to my lungs in January.  Since then I understood what the word "terminal" meant a lot more.  Feelings and thoughts that I had pushed away because I innocently thought I would be "cured," now had to be dealt with and I took to my watercolors.  Cancer has unfortunately consumed my life and I needed to address this with my work.  I can't explain how scary and alone cancer is but hope my paintings do.  I'm not trying to sugar coat anything with these pieces.  They are not happy paintings, but they are real, and I believe other cancer patients can relate to them.
                      Although you've been transforming the illness into poetry through this work, it must have     
                     a very painful side to record these moments. Are the paintings helping you cope?
 Yes, they do help me cope.  My ability to paint is really one of the only things I have left now that my health is gone.  They give me a feeling of accomplishment.  Cancer took away my ability to have a job, it has made my social life pretty difficult and I don't even try to think about a future because I have been burned too many times by this disease.  I spend the majority of my time sick and suffering and sometimes I think "what is the point of this?  Why go on?"  but my work has given me a reason to go on, to tell my story that I feel goes beyond me.  Yes, my paintings are mostly self portraits but I'm using myself as a subject to reach out to others who are in similar pain, struggling to survive.  I have been so blessed to meet other cancer patients who are such amazing people, who have similar struggles, and who I can really relate to.  They have helped me put things in perspective, not give up,  and really appreciate what I do have.  Many, whom I've had the honor to paint.

 How do you think viewers will react to this new phase of your job?
  I have been blown away by the response to my work by so many people!  I know they are difficult for my family and friends to look at. They are very intense and personal but I'm being as honest as possible.   I think they also make them proud of me, which alone is enough for me to live for.  Other patients and even strangers have reached out, telling me how much my work has touched them.  I've even been told they have made them cry.  I can't think of a better compliment to an artist, that a painting could move them that deeply.  As I type this I am literally stuck in the hospital, sick from the side effects of chemo but my heart is light as I look forward to my exhibit next week.  Having these paintings to express myself and reach out to others fighting gives me a reason to live, it gives me goals and makes me feel like i'm accomplishing something when so many things in my life have been taken away.  When I'm gone, whenever that may be, my work will still be able to speak for me.  

Friday, June 7, 2013

Another Friday Night. 2013, Watercolor

It sucks always feeling sick, and tired.  I miss going out with my friends in Brooklyn having some drinks and sharing a laugh.  I miss spontaneous, Nyc nights where you don't know whats going to happen but end up meeting cool people and having a wonderful time.  Summertime is hard when you are weak and sick.  I feel like the kid stuck, grounded in her room looking out the window at all the kids playing.  I am in bed most of the time.  When I'm feeling moderately up to getting out, I go for it!  Friends can't tell by looking at me but inside, my counts are really low and it can be dangerous for me to catch a cold because I barely have an immune system to fight anything off.  My body is always in pain.  When I go do something I have to take into account if I'll be able to sit down, which is a must.  I make sure I have ritalin, weed,  oxy, and some Ativan just to keep myself feeling stable.  I'm good at chilling out and going for little walks but i long for the day where i can ride a bike or go swimming again like I used to.  All my friends are busy gong to their jobs like a normal person.  My job they tell us at Sloan is literally trying to survive by doing chemo everyday.  It's a weird way to live, i think everyday on my ride over the Polaski bridge to the hospital.  Surreal that after 2 non stop cancer years its hard to see an end at the light of the tunnel anymore.  I don't make plans for my future anymore unless its a month at the most.  I am just grateful right now that my treatment is working.  Grateful for my friends and family keeping me going.   Hopeful about my artwork and having a voice about whats happened to me and does to so many others.

Thursday, June 6, 2013

Legalize Medicinal Marijuana, NYC!!

The Best Medicine.  2013.  Watercolor

Before Chemo I didn't understand how horrible Nausea was.  I am constantly sick to my stomach and puking all the time.  I sleep with a barf bucket next to me and last year had to have a barf bag with me whenever i was in the car.  i have thrown up on the street, in parking lots,  in restaurants, at friend's and families houses, on myself.  I have thrown up while crying because i cant stop throwing up.  The worst is that unlike vomiting after a hangover, vomiting from chemo just makes you feel worse.  The nausea stays with you and after feeling sick to my stomach with no relief for over a week at a time it starts to make you crazy.  I take anti nausea pills like Ativan, Zofran, Compazine, Visiril, Marinol, etc.  These all work to an extent and then you gain a tolerance or the actual pill can make you puke.  The only thing that has truly relieved my nausea and has actually allowed me to eat is good old natural Marijuana.  It calms your stomach almost completely for the time you are high.  Not only that, but it relieves the bone and muscle aches that possess my body.  Lastst year I was so sick I could barely move and was left in bed to barf and think about how horrible i felt and looked and how much my life completely sucked.  Weed helped distract me.  It helped me paint and draw when i felt so uninspired by my surroundings and situation.  It would actually help me talk to my parents and sometimes even laugh.  in a way weed helped me really analyze what was happening to my life in almost therapeutic way.  Really make me think of things that i normally would not confront and push out of my mind.  
  I'm lucky I know the right hook ups because disgustingly NYC has still not passed Medicinal Marajuana yet.  Other states have: Alaska, Arizona, Califonia, Conneticut, Colorado, DC, Delaware, Hawaii, Maine,  Masachusetts, Michigan,  Montana, Nevada,  New Jersey,  New Mexico, New Hampshire, Oregon, Rhode Island, Vermont, and Washington.
I think its really shitty that people that don't have cancer are making laws holding a medicine from us that real changes my quality of life.  I feel bad for kids i see with really square parents who believe the taboo against weed and won't let them have it and watch them get real poison in their bodies that makes them feel horrible and antidepressants along with a million other pills made all of chemicals.
You don't have to smoke gang.  I have a vaporizer that works wonderfully called the pax and can be brought wherever i want.  You can also cook weed and make delicious cookies, brownies, whatevs.  I have been putting hash oil in my soup.  I'm hoping the day comes soon when i will have a medical marijuana card and be able to pick out what kind i want or lollipops or tinctures.  I'd like to get pure, clean weed.  I'd like to pick the kind.  Sativa helps me a lot while Indica makes me too tired.  Till then I'll get it from the streets not really knowing whats in it but knowing it makes me feel hell of a lot better!!

Thursday, May 23, 2013

"Relapse", 2013. Watercolor

 This painting was done after the worst day of my life.  On January 14th, after only one month off of treatment and celebration of my new "Remission".  After more than a year of chemo/hell, surgeries, and radiation.  After the loss of my life as I knew it and just as I was starting to have hopes and plans of a new one,  I found out my cancer returned and had spread to my lungs.  I have 3 hospital bracelets on because upon getting this news I had to be admitted to a Psych Ward.  Apparently,  saying: "What should I do now?  Jump off the roof?'' is taken very seriously even when your dying.  Of course you are going to have a suicidal thought or two after having your heart and hopes crushed into a million pieces.  Sitting in between my two sobbing parents with my Doctor basically in tears holding my hand.  I don't think anyone that has gone through this hell has the right to judge or know how they would handle this news in that MOMENT after what I had been through.  It pisses me off because trying to survive is a lot harder than anyone without cancer could ever understand.  I wouldn't be putting myself through this hell if I was going to off myself.  I wouldn't do it to my parents.  I guess I never really thought cancer could kill me, like it does to so many, until that moment.

  Life has been completely different since my relapse.  For five months I have thought about my death a lot.  The stress and depression of relapsing put me down to 99 lbs.   I don't want to die but I see it all the time now.  What makes me any different?  Nothing.  Cancer doesn't care.  Why do some cancers leave you alone while others return with a vengeance?  It certainly has nothing to do with Karma, or Religion, or age, or how good of a person you are.  I see it with my own eyes everyday at the hospital.  Yesterday at Sloan they had dresses and suits for all the kids in Peds for a hospital Prom.  Many of them will never get a chance to go to their real one.  It makes me feel fortunate that even though there is so much I want to do, I need to remember I have been lucky to have gotten to do a lot in my life.  Relatively.

  I dream of a day where I have long hair, can dance, not feel sick and exhausted all the time.  I said goodbye to any dreams of having kids,  getting married, or seeing 40 after my relapse.  I do think Ewing's Sarcoma will get me in the end.  I'm just hoping that If I keep staying alive, new drugs will keep coming up to extend my life as long as possible.  I DON'T WANT TO DIE.  Luckily, the chemo regimen I'm on now is shrinking my tumors.  The last type of chemo I tried after my relapse did not work.  I am elated this one is, but not stupid. I am only on my 3rd cycle out of 12.   Each cycle everyday for 2 weeks for ANOTHER WHOLE YEAR.  I don't know what will happen but I will live for the small moments of happiness and friendship and family and beauty as I know it.  It's not ideal but it's all I got.  I am more hopeful,  for the first time since my relapse.  I think, maybe I will get a chance to visit India again.  Maybe I will date again.  I don't know if it's going to bite me in the ass to have these hopes but I can't help it.  For now,  I am excited about my artwork and the exhibitions I will be a part of that will be coming up that are a very, very big deal to me.  I'm getting the chance to tell my story the only way I know how and to reach others who might feel very alone, like I have.  I know my work might seem like a bummer to a lot of people, but I'm showing cancer for what it is.  I do not want to glamorize it.  At the same time I want the viewer to end up feeling inspired and to have learned something.  I'll be updating more about these shows soon.  I'll be going into my 3rd year battling this bastard of a cancer.  I can't believe it.  That is a long ass time living like this.  Is it living?.....not sure.  There should probably be some other word for what is I'm doing, but I'm still here.

Thursday, May 16, 2013

  The sun shines brighter now that I've finally got a bit of good news.  For the past 5 months since I relapsed in January, something positive has happened.  After finding out the last chemo wasn't working and my tumors were growing, I started getting realistic and have thought a lot about my death. I couldn't handle the heartbreak of another disappointment so I went into this one trying to be prepared/ not getting my hopes up and detaching as much as possible.  Of course, I haven't been able to sleep and have had constant nightmares.   I didn't really feel like talking to anyone and have had major anxiety about these life or death results.

  My dad came with me to my appointment for my scan results before chemo.  As soon as we got the good news that my tumors have all a shrank and there is no evidence of new disease anywhere, we both could just breath.  I haven't felt like crying from happiness in so long.   It's so nice to not have to think about dying every other second like I have been since my relapse.  Obviously, I have ANOTHER long, rough year ahead of me of chemo.  Another fucking year!  Jesus.  I don't know if its going to keep working or what is going to happen to me but I will take this good news and run with it.  Living the way I have the past 5 months has been extremely unbearable.  This waiting game.  Not having to watch my dad cry from misery and actually out of happiness makes everything worth it.  I have so much guilt about what my disease has done to my parents lives.  

  Unfortunately,  cancer never lets you forget about how evil and powerful it is for too long.  Right after my good news,  I got bad news about my friend who just down the hall was fighting for his life.  Things had taken a turn for the worst for him and they even gave him the death talk.  Miraculously he has come out of it,  but seeing him in so much pain and so sick really puts things in perspective and I was glad to have gotten good news so that I could really believe it when I was telling him to not give up and that as long as their is a regimen plan, something can work.   Hope changes everything but becomes harder and harder to hang onto when you are repeatedly beaten down.   But you take any glimmer of it that you get and it keeps you going.   

  All the pain in my body and hardships resulting from my cancer that are getting worse at least right now don't seem as bad in comparison to having unstoppable tumors growing inside me..  It's not like I'm in remission or anything.  I just really thought nothing was going to work since nothing was.  I wrote my funeral down last weekend.  I thought every headache was the cancer spreading to my brain.  That's really where I was at.   Living like this for so long on these drugs and always being sick is a very hard life to live.   My nueropathy is getting bad my hands don't work well and I am losing my mind: I cant remember anything and it is affecting my life extremely.   Nevertheless,  I  feel like I'm appreciating life as much as I can, at least till the next scans in 3 months.

  Our art show looks like its going to be great.  It's going to be on August 13th in Soho and the first official meeting besides me and Kaylin brainstorming has taken place.  It's the structure that I need in my life that has been missing.  I need a deadline.  I need a point.  I miss working.  While all my friends go to work, I go to chemo.  We have to pick a charity and I am pleased with how many people want to be a part of this.  We have so much talent behind this show with so much to say about something so important.

 I also have been trying to push myself to live as normal as possible.   I went to a couple art shows,  saw some old faces and met some new ones.  It is going to be great to give old friends a good update instead of trying to avoid the inquiring questions of doom.  I saw my old boss, Francesco Clemente,  a couple times last week and had a great time hanging out like old times and talking about life, art, and India.   It was nice to hear from him how much he loves the paintings I've been doing!!  This coming from one of the best watercolorists in the world!  I've sold almost all of them and am just feeling like they are starting to express what I want to say about my journey in this cancer hell.  My self portraits aren't easy for me to do.  It is very liberating but also makes me feel very vulnerable sharing them.  I've been so isolated though and they have truly been brought to life because of this isolation.  I want to make sure that they don't glamorize cancer and really express what its really like.  Cancer is not pretty.  I want others who are sick not to feel so alone and others who have no idea about cancer to feel like they do a little after looking at them.  I have a lot more to work on for this show but am so excited for it!  It's nice to get to feel excited about something again.  

Thursday, May 2, 2013


Cancer Friends and A trip to Vegas.


Spring on Opiates,  Watercolor and Ink, 2013
  Hello.  It hurts to type because I have nueropathy in my fingers.  Basically all the toxic chemicals they've been pushing into my body the past two years are destroying my nervous system.  I don't have any reflexes in my knees anymore and cant walk a straight line, one foot in front of the other.  Hopefully, I don't get pulled over !!  This also is the reason for my horrible chemo brain, which is just getting worse and worse.  I cant remember anything, I cant focus on anything, and I lose everything.

  I've been trying to push myself to have fun...  In between vomiting. Last year during my first year of hell I was too sick to do anything, to even move.  I told myself it would just be temporary though and I just had to get through it and life would come back.  I dreamed of growing my hair and eyelashes again, of dancing, having drinks, dating, going on a tropical vacation with my friends which never happened, going back to school to become an Art Therapist, not feeling sick and weak ALL the time.  That hope was the only thing that got me through that year.  Many times I thought I was dying, like when my temperature would go to 104 during long neutropenic fevers in isolation and when I couldn't get up without feeling like I was having a heart attack or fainting.  Many times I wanted to die, I felt so horrible.

  Unfortunately, my hopes and dreams were crushed in January when my cancer metastasized to my lungs.  Everything changed after that.  EVERYTHING. Since then things just keep getting worse and my existence is a seemingly constant limbo of fighting cancer but knowing its eventually going to kill me.  The worse things get, the easier it is to look at death as peace from the hell my life is.  I just can't take the sadness of it all anymore.  I see baby strollers everyday with chemo IVs coming out of them.  What ever you have someone has it worse.  there are babies born with cancer.  There are kids that have nuroblastoma, a cancer in the brain that is so aggressive it always comes back until it gets you.  These kids continue chemo in order to survive a little bit longer.  Its a sad, hard world to be a part of.  The fucked up thing is that I really do love life.  I love what life is like when you are healthy.  It is magical, the world truly is your oyster.   I miss that feeling. I'm losing all my hair again, I feel weak and nauseous all the time.  I find out next week if the new chemo I've been doing is working and I am bracing myself for the worst.  I would love to have 5 years.  That's it.  I've realized I'll probably never be old, never get married, or have a kid.  I know all this.  This is why I'm truly taking each chance I get to have some fun which is hard to do when you feel like shit and walking down the street is too much.


  What's really getting me through these dark days is my cancer friends.  When I was so sick at Mass General Hospital I closed myself off to the world stayed in a room during my infusions and only spoke to my nurses.  This time I sit in the recliners at Sloan with a bunch of other young adults with serious cancers like my own and gloomy prognosis's.  I've become really bonded to these people and we hang out after our infusions are done and commiserate and joke around.  So many of these people are some of the coolest people I know.  I think cancer does that to you.  It gets rid of the bullshit that I've realized so many people in my neighborhood strive off of.  people are never happy with what they have.. Never content.  They don't take the time to appreciate where they are and who they are with.   I'm not a part of that world anymore and have realized finally to shield myself from people who are. At the hospital I am surrounded by all young people like me who live in this cancer world.  They are all so genuine and just so real.  We were all normal kids once with hobbies, and dreams, goals, and aspirations.  Now we are all rail thin, white as ghosts, too weak to do the things we used to do.  No more swimming, skating, running, football, dancing, partying, many have had to drop out out of school and move away from their friends and family to go to Slaon.   None of us, if we even do make it out of this and actually meet someone that can deal with our baggage will be able to have kids.  We all know this.  I see pictures and videos of myself pre-cancer and my eyes are happier, I am lighter, prettier and naive.  I am HOPEFUL.  I miss that girl but am sooooo different then her now. I don't meet new people anymore unless its cancer related.  This is because I rarely can go out and do the normal things that people my age do.   Also I would just freak someone new out.



 Cancer is the opposite of the definition of Youth.  It is so not right and it breaks my heart..  but my heart was broken two years ago when I got the cancer phone call.  Your heart is never fixed after that.  All of the other kids at Sloan have that same heartbroken look in their eye even if they are smiling.



  It is nice to leave my life for a second and go somewhere else.  I really find my heart feeling lighter when I travel and get away.  Get away from chemo, the hospital, people asking annoying questions about my health when I might not feel like talking about it.  Easier to really live in the moment when I am away.  Its nice to go where nobody knows you. I actually went to Vegas this past weekend with my girl cancer crew.  Flew straight from chemo back to chemo. Suleika was speaking at the Stupid Cancer Convention so Kaylin, Erica, Kristin, and I all went to the Palms and really had a blast. Our room was upgraded to a Director's Suite with a stripper pole in the shower looking out through a window across the bar into our living room!!! haha  Although we were there for cancer you didn't have to go to anything you didn't want to.  I went to a couple seminars that I found very inspiring but also a little weird as I felt it was directed more towards "Survivors". What does that mean anyway?  I got asked a few times if I was a "Survivor."  Which to me, I am, because; fuck it, I'm still here!  I was happier doing my own thing, and seeing Vegas because I'm still in treatment and its still in my life so prominently.  I was really looking for a break from it all.   We went on a roller coaster at NY, NY which was crazy!!! I couldn't stop laughing.  I used to love roller coasters but obviously have been too sick to go on one.  For one second I thought I was going to barf but I didn't. Phew.  No wigs flying off either.  I really miss my short hair now.. We saw the strip, went to the pool, saw Freemont Street. I really had such a marvelous time with these girls and we'll be planning a upstate trip soon.  The next day my body was so sore and weak I had to rest.  The last day was epic though, Kaylin and I went with her friend Jon into the Nevada desert and shot AK 47's at our tumors, Jon had drawn onto soda cans. When they were shot you could smell the refreshing grape flavored mist explode into the desert air. I had a lot of aggression to blow off but the gun was so heavy for me.  I have no muscles left.  Next we went straight to a tattoo parlor and got little spades on our wrists at a place called "Precious Slut". haha  Flying back straight to chemo was ROUGH.

  I love my cancer free friends too, don't get me wrong.  They've done so much for me.  I realize its got to be hard being around me struggling with this disease for so long.  Cancer has truly exfoliated my fair weather friends.  I don't see or here from old friends but the ones that do: I love them and am ever so grateful for them.  I just don't get to see them as much because they all have lives.  I physically can't do the things that normal people do anymore.  I'm just too tired, sick or in pain.  I look forward to it seems the two days that I feel pretty good in between cycles. There is just NO WAY they can relate to this world I am unfortunately falling deeper into.  Hell, I can't relate to them anymore.  Having a future?  What is that like? Plus nobody knows what to say to me anymore about my situation. I wouldn't either. I recently ran into a couple I'm acquaintances with.  They acted soooo weird to me.  Uncomfortable and sad and just didn't now what to say.  It made me feel really awful,  but I get it.  It really makes me appreciate my true blue friends that treat me like regular Melissa with some compassion.  That's what I need.

  Now it is time for me to focus on the art show about cancer I'm working on with my fellow comrades.  We already have a venue and meetings are taking place.  I've also sold 4 of my self portraits and am being commissioned to do more hopefully for a show.  I feel like I'm in a rush to leave some sort of legacy before its my time.  

Thursday, April 4, 2013

Cold Reality

  I don't really know where to start...
I have had a very bad few weeks..   I found out on Monday after a cat scan that the chemo I have been hoping was working is unfortunately not.  The tumors have grown and my odds keep dropping. I'm still fighting and have started a different chemo regimen of Temozolomide, Irinotecan, and Vincristine.  It is two weeks long and after only 3 days so far I already feel horrible.  My body is weak,  I'm nauseous, and my throat and jaw hurt making it hard to swallow.  In the past few days I have become a lot less optimistic about any kind of future and am becoming a lot more realistic.  If this chemo doesn't work either, there are clinical trials, after that nothing..

  I hate that I've started noticing that my presence makes people uncomfortable and uneasy.  I get it.. I'm a perpetual bummer whether I like it or not.  I remind people of things that they don't want to think about.   I scare people.

  My days consist now of waking up, vomiting, getting in a car to Sloan, spending around  45 dollars a day in cab fare to and from Sloan.  Spending my day getting infused with poison inside a hospital.  I'm always in a hospital.  It's crazy to me now that most of my friends only have to go to a hospital once a year for a check up-  I cant imagine!!!  Once we get home I usually pass out from the fatigue.  It is very lonely.  Thank god, I have Kaylin who is suffering from the same drugs ( we have the same cancer, chemo drugs, and Doctor).  Its pretty crazy.  Everyone thinks we are sisters.   we sit and listen to kids with cancer srceaming with pain.  It is hard to hear.  Today we got our own room and brainstormed about ideas for a charity art show we want to put on while we were being infused.  We've come up with some really cool concepts and see it as our life's work.  It might be the last thing I have to show and its all I have now to focus on now.

  I'm sad that I'll most likely never be in love again or have a boyfriend.  This is really hard for me but who would voluntarily be a part of this world?  I'ver learned the hard way.   I will never accept death but I am so sick of living this way.  It is not a life.  I hate that I have become Cancer Girl to certain people and perhaps a story they can tell others about.. an oddity/ an untouchable.  Someone that Isn't taken seriously or like a normal person.  Its amazing to me how selfish people can be and after really letting them into my world they still don't get it.  Why would you waste someone's time that probably doesn't have a lot of it?  I have to remember that after all the kindness I've been shown from people there are good people and not so good out there.

  After my recurrence in January I started to realize that I will never have a long life.  It would be a miracle to see age 40.  It became clear to me around this time that I will never get married or have a kid which I had taken every precaution to preserve this right during my previous treatments.  Ewing's almost always comes back I've realized.  Now the farthest I can focus on is this summer.  I hope that death is a lot like being a asleep and it won't bother me like before you are born.  I feel the worst for my parents they never deserved this sadness.  I am really scared of the suffering that comes with dying from cancer.  I have seen it and it terrifies me.  It is slow, painful, and scary.

  Despite all of this sadness and suffering I am trying to find what happiness can be found.  I am going to Vegas with my cancer friends for a weekend at the end of April to shoot guns in the desert and take some aggression out.  Lately,  I have been fantasizing about smashing mailboxes out of a car window ...Never did that in High school.  We will also be attending this Stupid Cancer Event that one of my chemo bff's, Suleika, is speaking at and the NY Times wants to film our trip.  Why not?  I got nothing to lose.

Cancer buds, Kaylin Andres, and Suleika Jaouad
  I hope my friends understand that I'm too sick now too go out that much but would love for them to come over and just hangout.  It means the world to me and who knows how long we have left together.       Also I'm getting cable so that will be more fun for people. You wouldn't know it from my posts which i come to vent but I think I have still kept my sense of humor through all of this.  I do spend a lot of my time joking around when I can.  You have to find humor in everything.  I know this must be a very depressing post for people to read but remember this is actually my reality. I know it must be so unrelatable but I still can't even believe this is my life.  There's actually a split second when i wake up in the morning that I am "normal" am groggy and have forgotten.   I am my old self without these problems but then in one second it hits me like a brick.. oh yeah my life is fucked.  Other than that cancer is always on your mind.  I haven't given up all hope or I wouldn't be torturing myself with chemo.   I have just learned that hoping, wishing, and dreaming too much heartbreakingly hurts when they are crushed and I am just exhausted by this.  I'm not looking for pity, that's the last thing i want.  I just want people to be aware of what someone with cancer goes through.  

Thursday, March 28, 2013

Thursday, March 21, 2013


  I'm happy to announce that I'm about to be treated at Sloan Kettering from now on.  This will allow me to have more of a "normal" life.  No more living out of a suitcase back and fourth between Boston and New York.  Also some of my best friends go there. I'll actually have the same Doctor as my roommate, Kaylin!  We'll probably be doing chemo together in Pediatrics.  At Sloan, Ewing's Sarcoma patients, even young adults are treated in pediatrics because it is generally a pediatric cancer.  At first I thought that it might be really hard to see sick little kids, but they are so positive.  Mostly, they go about playing  perhaps unaware of all the evils of cancer as an adult.  The room is bright and colorful with toy CT scans for their dolls and even a clown!  Being the youngest all the time in Adult Oncology is really depressing. The rooms are grey and so are the people.  Everyone is sad and stares at me with pity.

   I will really miss my nurses and Doctor at Mass General.  I was treated with so much kindness from some of the most amazing, selfless people I'll ever meet. I got very close with them in the past two years. It is a wonderful hospital.  I was spoiled there.  It's very up to date, some of the rooms actually look like spas and I had massages and acupuncture anytime I wanted even as an outpatient.   Sloan is the best though and is doing things with Ewing's Sarcoma that most other hospitals aren't.  Most importantly it's in NYC where my life is. 

  Getting into Sloan was a battle and so was getting NY Medicaid.  It was so disorganized and stressful with everyone sending you on a wild goose chase and misinformation.  I cant believe how hard it was.  I had to go to the Medicaid office in China town with my mom feeling like shit from chemo.  I had a fever, could barely stand, and was throwing up in the bathroom.  I think that looking so sick and pathetic might have helped my chances.

  My last chemo was OK.  OK, because I constantly compare it to my original VAC regimen before my re diagnosis that was complete hell and felt like I was on the brink of death most of the year.  Most people don't realize, but that chemo cocktail is one of the worst for any kind of cancer.  It is longer and fucks you up more then almost any other chemo of any cancer.  Anyone that has gone through it has truly seen hell.  I don't think I could do it again.  I literally spent a whole year vomiting in pain in bed or at the hospital.  Luckily this regimen i'm on now of topotican and cytoxin is so much more tolerable.  There's the nausea, cramping, headaches, canker sores, fevers and fatigue but nothing compared to my whole body falling apart like last year.  I also haven't had any neutropenic fevers which were the worst and so lonely spending weeks in isolation.  

  I have scans soon to see if its even working which I am terrified about.  I have been having consistent nightmares about it.  I'm going to have to be partially sedated for this appointment.  Lately, I have been trying to stay busy so my mind doesn't go dark.  I think I was doing a pretty good job.  Kaylin and I both felt like shit all week and just went through it together at our apartment.  It's really nice to have someone there that truly understands your misery.  I guess its true misery does love company!  I'm glad that shes doing so much better after her successful surgery.  We have been watching her show "The World of Jenks" on MTV every Monday night about her battle with Ewing's.  I think it is amazing how she put herself out there to tell her story.  Watching it is like a lot like watching my own life dealing with this horrible disease.  I want everyone to watch it just to help them understand what it's like to be us.  

  In the midst of my positive attitude I received some horrible news that one other Ewing's patients at Mass General, Jim, who was 22 lost his battle and passed away.  He was so young and very close with my friend Claire (another Ewing's patient)  They were the same age, always did there chemo together and she called him her "chemo boyfriend".  She is heartbroken.  I got the news right before I went to my friends birthday party and started crying for a second at a bar.  It is really hard when friends die and I have just started to experience this.  Especially when they have the same cancer as you.  It makes everything a lot more real.  

  I have been trying to stay busy and have been seeing friends, getting tattoos from my friend Chuck SHHH! I'm not really supposed to, but who cares.  I've also been painting with water colors of cancer related self portraits.  I've already been commissioned and have sold one. Painting these makes me feel very vulnerable. It took me a long time to do a bald one.  I can't not do something with this, though.  It is my personally tragedy, my story, my life, my heartbreak.   I used to paint large oil paintings of other people looking good.   Now I am used to being alone and painting myself looking like shit.  I am in this battle for life alone.  So as I think any Artist would do, I've put myself as the subject.     I do really miss oils though, there's nothing else like it.  Cancer took this away from me too.  I had to get rid of my studio and being around oils, and turpentine is too toxic and makes me nauseous going through chemo.  So I have been embracing water colors and will start dabbling with my old friend, Acrylics.








Wednesday, March 13, 2013

" My painting is not violent, it's life that is violent. Even within the most beautiful landscape, in the trees, under the leaves, the insects are eating each other; violence is a part of life. We are born with a scream; we come into life with a scream and maybe love is a mosquito net between the fear of living and the fear of death." -Francis Bacon



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

Surreal


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