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