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.