Tuesday, October 18, 2011
I'm feeling a little better today. That ache in my bones is going away. it looks like the antibiotics are working. I haven't gotten a fever or had to get a blood transfusion this time. On Thursday I have an appointment with my surgeon to talk about when I'm going to have surgery. I was basically crippled off and on all summer because of the biopsies so i have mixed feelings about when they want to do it. I think they want to wait till the end of chemo because the recovery time would interfere with the chemo time and they want to shrink it down first. it will be nice to get that bitch ass tumor out of my foot. The cancer in my lymph nodes in my pelvic area and knee have shrunk down which is great but they still want to do surgery on those parts too.
For awhile they thought i might have it in my lungs too but after my pet scan they said it was just pneumonia. phew. a pet scan is when they inject you with this radioactive stuff and it makes your skeleton glow! for the rest of the day they tell you to pee a lot cuz you are radioactive and if you go into a federal building you'll set the alarms off! i actually prefer this to a cat scan because you have to drink tons of that gross barium shit. it makes me gag.
After my dr.s appointment my dad is driving me to NY! They have been really great with getting me back to Brooklyn when I'm up for it. My Dr's, nurses, and parents understand how important it is for me to be with my friends, be in my own room, in my city, have some independence. NY and NH are two different places! Half the battle of all this is staying positive. My friends are amazing and every time im there im so busy. i really am lucky. its hard for me to stay up late now so i don't frequent the bars like i used to but im just happy to hang out and have dinner and laugh it up.
it'll be Halloween soon! This has always been my favorite holiday and I've had some good costumes in the past. unfortunately maybe its the chemo brain but i cant come up with anything clever so I'm going to be Zorro. i think if its done well it'll be good.
Monday, October 17, 2011
I was going to wait to write the next blog cuz I'm tired, but i sound like I'm complaining so much in the last two and Hey Ive got nothing better to do!
This topic is the one that makes me cry no matter what and it is all the love and support i have received from so many people. i don't know how i would cope with out it and you guys will never know how much it means to me. They say you realize who your real friends are when the going gets tough and that you lose some fair whether friends due to illness. but i gotta say for the most part i have never felt so loved and seen genuine kindness in so many people. Hell, Ive made tons of friends because of this cancer crap.
I had to basically give up my normal active life and move back in with my parents in Nh where i have no friends. i miss everybody so much all time. Just having someone touch me without a latex glove means so much to me. I have built relationships with people that i was not that close with, and strengthened already close ones. People have reached out to me that i didn't even know! people really can surprise you. I don't think its because they pity me or feel like they're doing a good deed. i think, in our busy crazy young lives sometimes getting caught up in the drama and superficiality of the big city is easy and when something happens like this it knocks people out of their seats. I know Ive changed a lot and am learning whats really important in life. i feel like even though I'm the one with cancer that everyone I'm close to is going through this in their own way too... and i NEED you guys.
My parents are so amazing they basically have a 29 yr old child they have to take care for in their 60s. and they do it with a smile and are so caring and patient with me. they wake me up and bring me to all my appointments at 6 in the morning, they cook every meal for me. Every time i puke they run to help me. They've bought me a cat and tons of other stuff. They deal with me being a brat and having melt downs. i even have a bell i ring when I'm stuck in bed! i don't know how people do this without that support. i feel guilty sometimes because no one saw this coming and they deserve to be retired and golfing and riding their motorcycles everyday. the hard part of child rearing should be over. but i guess when your a parent its just what you do. i know they would switch with me if they could and it kills them to see me like this but they stay strong because i need them to.
aah so intense .. anyway i had a great birthday so many people came and my best friend Sabine made me the worlds best cake of my cat! I got tons of great presents from everybody and ate king crab legs for the first time! i don't really drink anymore cuz i feel like puking all the time but i smoke a lotta weeeeed now. it really does help your whole body, mind, and soul, man. haha. i do miss drinking though, i guess i miss the lack of inhibitions! When im in ny with my friends in my old life i feel really happy and am ever bored!
I wish when i had my health that i appreciated it more and didn't get so affected about stupid drama with friends and boys. i am so excited to start living again when all this shit is over. it will be so nice to have hair again and i really want to go to some tropical island with a bunch of friends and go snorkeling and surfing.
its really weird for me to be writing a blog. its not really my style. i don't tweet or usually like putting personal stuff up on the Internet. and boy you cant get much more personal than this! Obviously theres the fact I'm a horrible writer and don't give an eff about grammar or punctuation. I know, i know, its horrible! but hey gimme a break i have cancer! j/k Ive always been more of a picture is worth a thousand words kind of gal. i feel like its kind of narcissistic. but like i said i have A LOT of free time and i guess this is kind of therapeutic. maybe it' ll help someone else in my situation not feel so alone. The people that reached out to me that went through cancer and chemo said afterwards its tough making sense of why it happened to them. They said talking to someone like me helps them feel like it all had a purpose.
Any way, although i feel pretty naked being so open and honest with the world, i feel good about it. I mean i never knew anyone with cancer, it was always someones uncle Joe or so and so's make a wish cousin. i was so naive and ignorant about the whole thing so if anything, i guess this is informative.
Chemo is a bitch. Your basically being flushed with poisen that makes you tired, throw up, when your not puing your nauseas. it hurts to go to the bathroom, my finger tips have continous pins and needles. i have hot flashes all the time from the Lupron which i get a shot of every 3 months to put me into a temporary menopause because chemo can damage your eggs. the worst are the nuetropenic fevers ive been getting which is when you r white cells are so low you cant fight off infection and you have to stay in the hospital. this is the most depressing thing for me. After being in the hospital 5 days in a row 5 hrs each then laying in bed in boring old nh for a week to have to stay in the hospital is the worst! My doc has put me on an an antibiotic so hopefully i wont get them anymore. i seriously dont think i could handle another trip to the hospital.
Chemo makes your whole body hurt, you can feel your bones hurt. The fatigue never really goes away. Typing is tiring!
ive been doing chemo for 3 months and all my eyelashes and eyebrows are almost gone. with my wig and makeup you couldn't even tell before, but now without eyelashes i look weird and tired. Cancer really strips you of your femininity and vanity.
i cut my hair off before it started falling out really short. After a big chunk came out in my hand i locked the bathroom door and buzzed it. This was something i had been dreading more than anything (except dying) i had pictured myself looking like one of the witches in the roald dahl book/movie. Not a good look! Once your bald it just srceams cancer, it really hits you that your sick.
oddly enough i didnt cry. it was definately intense and surreal but it wasnt as sad as i thought it would be. i think my mom was more upset. she cried when i got my hair chopped off at the salon/wig place. That was also not as bad i thought it was going to be. i had ictured rows of wigs with bald people running around. in fact it was a fancy salon on newbury st called salon10 and you go in and this nice lady pat brings you into an empty seperate room and has you try some wigs on. then they make it for you.
Welp. Its been awhile since i've posted any artwork. This is because my life has completely changed in every way. In June I was diagnosed with a rare bone cancer called Ewing's Sarcoma. Mostly young children get it but i happened to win the shit lottery. Its in my left foot, and has moved to my knee and pelvic lymphnode. I've been doing chemo since the end of june and it's a lot rougher than i thought it would be.
I had mixed feelings about writing a blog. Im a very private person and am NOT a writer. Being a young adult with cancer is very lonely, though, and whats helped me is reading other young peoples blogs. The reward for them is knowing they've hepled someone else. Im hoping this will be the same for me.
The way this all started happened innocently enough.. I was partying it up last xmas time with my friends at a local bar, Legion, when my one of my friends squished my foot with a barstool (by accident) it hurt but not that bad and i probably just got a shot. Maybe a pickle back, i dont really remember. The next day it was bruised but being pretty active growing up i figured that foot injuries usually look worse than they are and i probably just bruised a muscle or sprained it. Mind you,It really didnt hurt that bad. Over the next 2 months i lived my normal life : assisting for my boss francesco clemente, going to my own studio, dancing, walking everywhere (i live in ny) i was a pretty happy 28 year old.
In February my foot would throb sometimes at night and got this hard bump on it so i went to see a foot dr. He was really nice and because i didn't have health insurance, waived a lot of the fees for xrays and MRIS. He noticed right away that i had crushed my third metatarsus and that there was an odd "bone mass" around it. He said it probably wasnt anything but a bone infection because i had been walking around on it. but to be on the safe side because i had a history of melenoma ( had surgery for a malignant mole 3 yrs ago.) he wanted to do a biopsy. So i was given a big black boot and went on my merry way not worrying about cancer or tumors at all. I danced with that boot on, i played michael jackson wii, I ran around brooklyn, day and night.
My mom came to ny to take me to my biopsy where i was AWAKE while the dr. cut open my foot and pulled out tissue and bones. Very painful but i still didn't think i had a problem. I missed Easter cuz i couldnt walk and my mom took me home to nh to recover for what we thought would just be the rest of the week. This is when my life changed and everything became very real: they found a Malignant Tumor.
The rest of the summer was very frustrating. I had to have 2 more biopsies because we knew i had cancer but the question of the day was what kind. They though it was melenoma and i went to see a specialist she gave me the second biopsy AWAKe but this time i could feel it while she was pulling bone out of my foot. I listened to Black Sabbath EVIL WOMAN as she did this. i never felt so much pain. I screamed and cried the whole way back from boston and hours after in agony, and i usually don't cry from physical pain. This time the waiting was the worst. i would stay up and look up melenoma on the interenet and read about how maybe i had a couple years left at most and that basically i was dead meat. i couldnt sleep but thats all i wanted to do. Being awake was to painful and scary. I took as many painkillers as i could to sleep as much as possible. This biopsy came back infuckingconclusive. I was so angry, what did you have to have for people to care what was wrong with you and get to the bottem of things?? INSURANCE wouldve helped but since i still didnt have a diagnosis i couldnt get it and without it no one was in a rush to find out what was wrong with me and i had to settle for in-office surgeries.
Finally the third biospsy was at mass general and i was put under for a real surgery. During this time i had a lot of hope that since they couldnt find anything that this whole thing was a fluke and i was gonna be ok and be fine by the 4th of july. unfortunatley i got the call from my surgeon that he had good news and bad news: The good news: not melenoma, The bad news:Ewings Sarcoma.
The weird thing was i had just read Autobiography of a face written by Lucy Grealy who had Ewings in her jaw and was left deformed because of her surgeries. I also had read Truth and Beauty which is about her written by her friend. so i had an idea of what Ewings was and knew it was still a big deal.
The worst phone call ive ever recieved was from my oncologist when he told me i had to do a year of chemotherapy. i have never sobbed on the phone to a complete stranger before like that.
after that phone call it really hit me that things were about to change. i met my oncologist and he held my hand looked me in the eye and said "this is going to be a very hard year but i want to save you."; They give you a chemo cd which i knew i wouldnt watch. the whole thing was just too much. how could i be a sick person? Picturing myself bald was literally frightening to me. He told me i'd have a port implanted in my chest. In my head i pictured a hole or one of those thingys you blow inflatable pool toys with. Getting the port was very painful and my neck was stiff for a few days.
After this i went to back to ny. Word spreads when you have cancer and no matter what you have to talk about it with people or its like an an elephant in the room. I don't mind talking about it. At first i was kind of ashamed or embarrassed, ive never liked a lot of attention and when you have cancer the spotlight is on you whether you like it or not. I think people are kind of intrigued by someone thats facing their own mortality. people tell me that i was meant to get this because i can "handle" it the thing is i dont believe, this anyone could "handle" this. You dont really have a choice but to try and survive. you really do find out you're a lot stronger than you thought you were.