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!