Wednesday, November 21, 2012

 I haven't really written since I finished chemo.  People have been wondering what I've been up to since.  I haven't had a second because I've been very busy with surgeries, more radiation, planning a trip to India, and moving in my friend Kaylin who unfortunately  has been rediagnosed with Ewing's Sarcoma.  

  After chemo I had a pretty invasive surgery to remove my lymph-nodes in my left knee and pelvis (where the cancer had spread) at the beginning of August.  They removed 30 lymph-nodes and I think 15 were cancerous.  I was in the hospital for a week and it took awhile to recover from that.  I naively thought that after this I would be all done and could begin my new life.  I even started applying for jobs.  Unfortunately the pathology test from my surgery revealed that the lymph-nodes removed were sort of bursting open with that bastard Ewing's sarcoma.   I was told unless I immediately started 6 weeks of radiation again on my knee and pelvis there would be a 60 percent chance of the cancer taking over within a year.  I was pretty disappointed and discouraged once again by my health and also by things going on in my personal life that left me feeling more alone than ever.  

  After starting radiation I was  presented with the option of having ANOTHER surgery to move my left ovary over in hopes of preventing it from being fried from radiation.  Having radiation done to your pelvis as a female can kill any chances on ever having a baby.  I'm not even sure I want to bring a kid into such a fucked up world now.  But I do want to have the option that so many women take for granted.  I think I would be a good mother but after seeing what my parents had to go through this year, I just don't know if I could handle it if something happened to said child.  I've always been glad that it is me that has cancer and not my parents, brother, or sister.  My parents have been so amazing and selfless and I know how much cancer has disrupted their world.  I  literally would have died without them.  I just don't know if I could ever go through what they have been through.   If I die my parents lives would be ruined.  This has been a major factor of not giving up for me.  Making the decision to have the ovary moved was pretty tough because I am so sick of getting cut into, and was worried about permanently messing up my insides or side effects.  Also, I haven't  really been given many options during my cancer journey.  Everything I have done thus far was pretty mandatory.  Do it or die.  This  was the first time I really had to think about it.  In the end I chose to go ahead with the surgery because if I survive all this shit and some day get the chance to have my own family, I don't want to regret any decisions I made now.  I want to be as normal as possible.  Not being able to have a kid would just be another thing that would make me feel like damaged goods.  I don't want future Melissa to be pissed at Melissa from the past.

  After chemo I thought I was going to be so happy to be done and appreciate every second of my new life.  I thought that was the trade off of going through such hell.  I was not prepared for the depression and the anger I feel so often.  I did a lot of research and realized this is very normal especially for people my age.  When you're my age you are supposed to be in your prime and life should be all about making your dreams come true.  When you have cancer you have to drop everything and just try to make it through the day.  I lost my  looks, energy, social life, memory, job, romantic life.  I really tried to keep all of those things as much as I could.  But my treatment has lasted over a year and a half and its kind of beaten me down.  After going through cancer the question is "What now?"   The fact that it is so hard to relate to "normal" people doesn't help.  Right before I was diagnosed at age 28, I was pretty happy.  I was pretty self confident.  I was secure with my looks.  I was dating.  I had started showing and selling my artwork regularly and even had my first piece in a Chelsea gallery.  I had gotten a promotion at my job working for Francesco Clemente.  I was excited about my future and life in general.  Then cancer hit, now I have so many insecurites with the way I look and about life in general.  I know I should be happy to have hair at all but I can't help but wish it was long again.  I have a lot of scars now.  I am single and don't think anyone will ever be able to handle all my baggage or want to.  I can't really blame them, I didn't choose my life why would some one else want to be a part of it that closely?   Maybe I need to meet a guy that had cancer too.  I am broke .  I have no job or money left.  I really need to get my life on track A.S.A.P.,  I have no idea how much time I have left.

  For the past month and a half I have been living at a nursing home in Boston a block away from my hospital for Radiation.  It has been nice having my independence and seeing a lot of old college friends that I've really reconnected with.  Some people will always be there for you, no matter how tough things get or how long its been since you seen them.  Radiation is everyday and I only have 2 weeks left!  It has left me exhausted.  The  back of my knee is completely burnt, blistering, very painful and I can barely walk.   I can only wear sweat pants, to add insult to injury!! haha  The good news is that I am done with that and only have two weeks left of the pelvic proton radiation.  Radiation is a lot like being abducted by aliens.  The room looks like a space ship and I am strapped onto a table with my arms up holding onto two metal bars.  The floor dips down and the whole room moves around me.  The table I'm lying on moves too.  All my doctors and radiologists are so nice and I'm really going to miss them.  I've spent nearly two months every day with them!  I've been busy in between being at the hospital going to museums, aquariums, reading, drawing, painting, learning how to play the ukulele.  Trying to just better myself as a person.  I feel like I wasted too much time in the past with other people's dramas and problems.  I also shouldn't have put so many things off, thinking I had all the time in the world.  I try to live more in the moment now.   I've learned how there isn't anything more important than your health and the people in your life.  I wish everyone thought that way.
 Some exciting news in the near horizon, besides finishing treatment, is that I have been selected to be part of a cancer survivor volunteer program going to India!  I had to write an essay, meet with the organizer, and was picked with 11 other cancer survivors to volunteer and be part of a documentary in Delhi, India in February.  I am very excited!  I am in dire need of an adventure!  I want to go somewhere that is the complete opposite of here.  I'm kind of fed up with western civilization right now.  It seems like people only care about you if you are famous or have a lot of money.  Why should healthcare be so hard to get?  Why should one person's right to live be more important than another?  Why is marajuana not legal in every state when it seriously helps so many people?  What a stupid taboo.  Don't even get me started on that... I think India will really open my eyes to how a whole other part of the world exists.  I think helping others will help me.  I know I'll be put in a lot of tough situations and see a lot off difficult things to see, but I think I need that.  I'm not going for a vacation, but to mend my heart and soul.   I  can't wait to be a part of the colors and spirituality that India has to offer.  I think it will be very inspiring for my life and my artwork.  I have been doing a lot of water colors and sketches this year and am working on a whole cancer series.  I hope to compose a book with these pieces.  I need to start showing my work again to help fulfill my life.

  Alas, I am reminded that cancer will always be in my life.  My recent cat-scans showed a node in my lung.  A total bummer.  In a way I'm becoming numb to bad news.  Hopefully it'll just  be bronchitis or pneumonia but my doctor will be checking up on it in two months.  How much I wish I could just have one Doctors appointment that was just positive news!
  I recently got my port (the device implanted in my chest to receive chemo with) removed!  It was weird because when it was put in I was put under.  This time I was awake and the doctors that removed it were so nice and funny I was laughing the whole time.  They applied local anesthesia and even though I couldn't feel anything, I could tell they were tugging and pulling it out of my chest.  To my surprise it looks like a little purple metal heart.  They let me keep it ( even though they weren't supposed to. shhh)  I have big plans to incorporate it into a painting.  

  I've left this for last, because it breaks my heart,  but my friend, Kaylin, who I met this year, has a reoccurrance of Ewing's sarcoma again.  It has reappeared as a cantalope sized tumor wrapped around her lung.  She has actually moved in with me in brooklyn while she undergoes treatment at Sloan Kettering.  People have questioned my decision to have her move in.  They  are worried it will be too much for me to continously be in "Cancer World".  There really wasn't even a question in my mind.  She needs me and I need  her.  She is the only person I can truly relate to.  People don't realize that being surrounded with "healthy" people can make you feel more alone than ever.  When we met I was the sick one and she was the "survivor".  Now I'm getting better and she is sick.  The roles have completely reversed.  I never would have thought that would happen.  I have so much respect for her in how she handles herself.    Dealing with a reoccurance is something I have no experience with but is my worst nightmare as it is every cancer survivor's.  We always talk about how people call us heroes but in actuality when your choices are do chemo or die there really isnt much of a choice.  It's just not fair and it truly is a reminder that life is short and it can come back at any time.  Once she is done with all this shit we want to go on a trip to Berlin and Amsterdam and live it up!

Saturday, September 29, 2012

#Delhi2013 A Fresh Chapter

As an artist I need to feel inspired to create and have always been fascinated by the rich culture and spirituality that India offers.  Before I got sick I worked for an artist in NYC who showed me Indian shadow puppets he had collected in India.  I became very fascinated with them. The shadow shows begin with an invocation to Ganesha, the elephant-headed son of Shiva, who is treated as the patron God of all puppets. These puppets are huge double-sided, and colorfully painted on thin leather. The best part is that the artists sing while they are painting them!  Part of the beauty of the art is the process.  I love that. 

At times I didn’t know if I’d make it out alive.  There are no words for how evil cancer is.  After my diagnosis of Ewings Sarcoma my whole life changed.  I lost my health, my hair, my job, and my energy.   As a young adult I felt very alone and unable to relate to lifelong friends.  I wouldn’t have made it without their support, but I felt like an alien.  I lay in a hospital all year watching while they were all getting engaged, promoted, married, etc.  I asked myself many times.  “Why me?”  Did I deserve this?   Emotionally it is very tough.  Cancer tries to strip you of everything.  It can’t take your spirit, though.  I had to focus on things I did love … like art.  Through this journey I’ve been inspired to return to school to become an art-therapist and help others.

I’ve found that the best medicine is connecting with others who have also suffered.  I met a girl my age during my treatment who had Ewing’s too and we quickly became like sisters.  We have a lot in common and I look up to her because she had won the battle with grace and beauty.  If she could do it, I could too!  We have talked for hours about cancer, jokes, dating, dying.  I can tell her anything and she understands.  Unfortunately cancer always knows the right (worst) time to show its ugly head.  I just found out my dear friend has a recurrence after 3 years of being in the clear.  Now I am there for her.

No one tells you what life’s going to be like after cancer treatment.  After 17 cycles of chemo lasting a full year, 12 weeks of radiation, and multiple surgeries, the world asks you to be a normal young adult again, to start where you left off.  It’s impossible!  Ewing’s Sarcoma not only messed with my body it messed with my head and broke my heart.  Slowly I’m trying to pick up the pieces.  Although the uncertainty of my future is scary, it’s also kind of exciting.  I’m in the perfect position to start an adventure!  I have nothing holding me back.  After my last Chemo cycle my dad gave me a necklace of the Hindu god, Ganesha, who symbolizes New Beginnings.  I am ready for my New Beginning!

Tuesday, June 26, 2012

Hi everyone!
Im done with chemo!!  June 15th was the last day, after 17 cycles (8 hrs a day 5 days in a row) and 6 weeks of radiation.  I really cant express how surreal it is to be done.  It hits me a little more each day, especially after how horrible this round was on my body.

On the last day my nurses, doctors, and parents threw a little party in my room.  My grandma even made it in to congratulate me.  There was a cake (for the nurses) xmas lights and tears.  My dad gave me a necklace of the Hindu god of new beginnings, Ganesha.  Typing this now makes me tear up a little because I really will miss my nurses even though I'm so happy to be done.  They really were such amazing selfless people that have taken care of me.  They helped save my life, literally,  but were also there to talk to and cheer me up.  I hope they know how much I appreciate them.

  Since the first day of this cycle I have been throwing up constantly and my body is soo weak.  I really don't think my body could tolerate another cycle anyway.  I got pretty scared this time because of how weak i felt.  getting up and going into another room would make me feel dizzy and like i was either going to have a heart attack or faint due to low counts, dehydration, and a high heart rate.  You know all normal stuff! I got another neutropenic fever and spent almost a week in the hospital which was pretty hard since I'm just so antsy to have a life now and get a little bit of a summer.  My counts finally went up after 3 units of blood and i was free to leave.  Finally free!   Unfortunately, I started having blurry vision  and one of my pupils was completely dilated.  The doctors freaked out and thought I was having a stroke.  (One of my doctors names was Sayid which is my friends cat's name) so I was given the crushing news I had to stay and have brain MRIs and have neurologists look at me which broke my heart.  I don't think the anyone really got why i was so upset but after being trapped in this cancer world for more then a year all i have done is focus on the end.  Thank god i wasn't having a stroke it was a side effect from an anti-nausea patch called a Scopolamine patch which goes under your ear and i must have rubbed my eye after touching it.  I was finally released yesterday.  I still am sick and got a fever again today but will hopefully be up for walking around a little tomorrow.

  I am dying to start my life!!!  I want to do everything.  Im realistic and know that there is a chance that the cancer will come back.  Im kind of in a rush to do as may epic things as possible asap and get the most I can out of life while I'm here.  I want to travel, I want to switch careers to something that helps other people, I want to have my own family someday.  I really just want to live fearlessly and get the most out of everyday.

  In other news my eyebrows and eyelashes have noticeably started to grow back today!!  I am so excited about this.  Its a sign of new beginnings! Coming out of this hell of year i feel like a completely different person.  Im excited to get back to ny and celebrate with my friends and then a trip to california before my surgery.  I attribute my survival thus far to friends and family.  Im a firm believer that the environment that surrounds you really makes all the difference in your energy and drive.  I really dont think I would have made it without them.  I'll never be able to fully express how much I love everyone thats helped me get through this year.  I know that no one will ever really be able to understand what I've been through but the smallest gestures of kindness have made all the difference to me.  The bonds I've made with all sorts of people have made life worth living.  I wouldn't trade that for the world.  I've been blown away by the outpouring of support and love.  In a world where such cruel unfair things happen, this alone has me really excited to be alive knowing that such love exists.

Monday, May 28, 2012

hi everyone, I, once again, am stuck in the hospital. Another neutropenic fever. ive been in bed for about 2 weeks since my 16th chemo cycle. One more left!! No more red devil! woooh woooh!

 I've been pretty depressed, the last cycles have been brutal, each one worst than the last. my body feels so week and i physically and mentally am falling apart. Thank god i only have one left-thats all ive got left in me. The treatment ive been on is especially aggressive. luckily my tumors have all shrank and my scans look good. I have a big surgery after which i really dont feel like thinking about until the chemos over. i cant handle thinking about that right now. i feel like ive seen how dark life can be and have really been shaken by it.

 When im sick im very angry, lonely, and depressed. the times i feel ok and make it to nyc to see my friends has been so valuable to me. i barely made it to one of my best friends wedding last time. i am so happy i did though, it was very beautiful and very fun. It is hard to see pictures of them all cannon balling into swimming pools and bbqing today as its memorial day weekend. i long for summer so much. im so sick of being inside all the time. i pretty much missed the last one because thats when all this shit started. There are so any things i want to do immediately. i need a vacation from my life and then i need to start living again.
 some random things i want to do:
 go tubing in the delaware river
celebrate the 4th of july havent in 3 yrs due to illness
 visit my sister in san diego
 trip to l.a.
trip to new orleans
puerto rico in oct. with all my friends
amsterdam and berlin
 south africa
my birthday
grow hair!!!
 have an art show
 go back to school
 look more into my spirtuality
 learn more
 be happy
be healthy
 go swimming!!!!!
 swim with dolphins
 art therapy
grow as an artist
more compassionate
 see Moonrise Kingdom
see the Alice Neel work up at David Zwirner Gallery
buy some summer clothes
not throw up all the time
 not be so tired all the time= be fun again!!!
not have to wait in waiting rooms all the time
theres a lot more i want in life but some of those things are more unplanned that are kind of out of my control and more left up to fate and the stars

 here is a list of things i wanted to achieve this year that I wrote down last July 2, 2011. i had just started chemo:
 Love myself/life
 paint/draw: new direction in work
find beauty and love in others
 new strength i never knew i had
what others think of you doesn't matter
 learn to play instrument
 read a lot of books
watch a lot of great movies
 keep a journal/blog?
keep a sense of humor
realize that in a way this was a good thing
 keep in mind its not forever
 build stronger relationships don't put up with bullshit!!!
go to the beach
 ride on the motorcyle as much as possible
 keep in touch with everybody
make new friends
grow up
don't sweat the small stuff
 i think i pretty much achieved everything although i wasn't aware yet at how difficult chemo would be. It was definitely more horrible than i ever could have imagined. having cancer is more horrible than i could have imagined. im on tons of medication right now and can only tpe with one hand from the iv pain so i have to end here

Wednesday, April 11, 2012

Hi there, 
I am stuck in the hospital once again.  I have a fever and haven't been able to eat or drink anything in over a week, despite frequent trips to the cancer ward for fluids.     My stomach has not given me one second of relief and I've been puking nonstop, and all i want is to be unconscious until this passes.  Because of my fever i have been admitted to the hospital overnight for a few days.  This morning while receiving one of the antibiotics called Vancomycin, caused me to wake up with a red itchy rash all over my body and face.  This reaction is called Red Man's Syndrome. Its crazy that I've done 14 cycles of this hell and am still discovering new and horrible side effects.  Benadryl fixed this right away though.

These are a few little painting/ doodles I've done and had pics of on my phone.  I'll have to post some of my others when i get back home.

 I cant wait to be completely done with chemo.  only 3 left.  I feel like these last ones are the worst, the longest and I've hit the wall.  June 4th is the day of my last chemo session.  i am looking forward to summer more than words can say.  I'd really like to travel a lot this year.  To feel alive,  get away from everywhere I've spent sick.  To be inspired again for my art.  I also will be applying to schools.   Hopefully ill be pretty busy and will make up for this shit/lost year.

Its lonely and boring in the hospital. I used to be the kind of person that had to go out every Friday night in fear i might "miss" something. Now i miss almost everything and I have no choice but to get used to it.
check out an article written about one of my pieces that showed at the Slagg Gallery, ny, ny.

Sunday, March 25, 2012

Sick of being me

I haven't written in a long time. I have been through a lot. I've done 13 cycles of chemo and 6 weeks of radiation. I still have 4 more and surgery. Cancer has totally consumed my life. I've spent Xmas as sick as can be in the hospital but made sure iI had an amazing New Years in ny. I've spent a lot of time with my grandma. Ive missed friends bdays, wedding showers, parties, etc. I've cried, I've laughed, I've had my heart melt and I've had it bruised. I've wanted to die at times but I've also been optimistic and have had amazing times and conversations with people. I've been touched by people's hearts, I've also been extremely disappointed. I've decided I want to become an Art Therapist after this and am going to go back to school so that someday i can help others. I've also decided on going on a trip to costa rica. None of this can happen till I'm cancer free which will hopefully be soon. I have scans in April to see how eveythings going and then plan the surgeries.

Right now, unfortunately, I am feeling pretty sad. I am in ny and physically feeling not so bad but mentally feel like I'm hanging on by a thread. I am surrounded by amazing friends in the city I love but have never felt so alone. It's hard to see everybody else living life. I'm almost done and it is springtime and I want to live again. I feel like I'll never catch up with everybody. Everyone I know is doing amazing things, work, traveling, relationships, engagements, marriage, babies and all I can do is watch. I'm happy for everyone but I'm scared I'll never get a chance at any of these. That I've missed my mark because of this bullshit year. Sometimes I feel like I'm cursed. I feel like nothing ever comes easy to me. There's always a catch. If something good happens it's always taken away. Just let me have at least one of these happy life moments. I feel like I have nothing and that no one understands. How could they? Its hard hearing friends complain about their jobs, love lives, excessive traveling mishaps when I would love to have these kind of problems. It's hard having the phone calls dwindle down. People are used to me having cancer.

I was recently told that if they have to do radiation on my lymph nodes after surgery i may never be able to have kids. This is really sad to me because i think I'd be a stellar mom some day. I don't even feel like a girl right now more like a creature. I don't even look at the opposite sex when I go out. I dont want to let anyone in. At the beginning of chemo, there was a guy that was per suing me that seemed very sweet. Once i told him I had just found out about the cancer I never heard from him again. It suprising who stands up to plate and who can't handle it. I'm glad he did me the favor of realizing he couldn't before getting involved and backing out. I don't blame him, it's a pretty intense situation. I hope someone will really be to handle me and all this cancer baggage someday.

have chemo brain and not only can I not remember anything I also think things have happened that never did. I can't read or concentrate. I feel like I'm going insane in the membrane.

I'm sorry I'm being negative but my heart hurts. I'm sinking a little. I'm sick of being in this hellish limbo. I'm sad that cancer exists and that I had to be part of it. I'm sad for all the people in the hospital. I'm sad for bald babies with that chemo, miserable, dead look in their eye. I'm sad for people that die and know their going to die. I'm sad when the chemo room is packed. Im sad when im too sick to walk and have to be in a wheelchair. I'm sad for my poor parents, I'm sad that life is so cruel to some. I will never know why and I guess I'm having trouble coming to terms with how unfair life is. I know everyone has their battles but it seems like some people have it worse than others for no reason. I used to believe in karma. That if u treated others well life would be good to you. I don't think I was a bad person before this so what the fuck?

I don't think I'll ever be "normal" again. I feel traumatized. I could never put into words the emotions ive gone through, the thoughts ive had the things that I've seen. This year has been too much. I feel very different than everybody else.. I Have no energy for people that are all talk anymore. I cannot suffer Fools almost to a fault. But I also feel more compassionate to others and can see beauty in most people. Im worried that people see me as that "cancer girl". Theres a lot more to me. What will they think of me after? Its weird knowing that people know and are intrigued by my disease. Its weird when u can tell it makes some people uncomfortable. How you can take your wig off to some people but others freak out. All i can do is be Very open about it. But Even dressed up with wig and makeup and looking relatively good i don't really feel completey myself. I feel like i have this weird secret that can make me feel a little insecure. I've never liked to think about cancer before this because it scared me. It still scares me but I do feel like I am a better person for witnessing and living the pain that so many silent sufferers go through. If anything it builds character.

I'm feeling pretty bad about myself and things right now but not all the time. Its hard but i know i am a good person and a loyal, sympathetic, fun person and hopefully things will get better with my life. I've grown up so much this year. I've learned that you can't judge people because u never know what someones gone through in life. I've learned u can't expect good things to happen to you just because you "deserve" it. I've learned that people can surprise you. The rest of the week I've been pretty happy seeing friends and enjoying the weather. I went to a BBQ yesterday and laughed the whole time with friends. I met a bunch of cool genuine people too. I have a new friend that had the same cancer I have and beat it. She in an inspiration and makes me feel so not crazy when I talk to her. I'm really glad she's my new friend. We have so much in common. I'm glad I figured out what I want to do with my life. It only took me 29 years! I think I would be a great art therapist.. I really need to turn lemons into lemonade. I have to or What has been the point to all this? There's no way I could turn my cheek to the disease and want to help others. I have to get a few phycology electives and then I'll apply to grad schools. I'm actually really excited about this revelation and life plan!