Tuesday, April 29, 2008

Adventures in Chemotherapy II




It's that time again where I sit for 6 hours to receive my monthly intake of cyclophosphamide and everything that comes with it. This late in the afternoon the place is empty, so when my IV beeps they know it's me. This is the first time I've done this alone. I must say it much quieter and less stressful without my mother here. It's a little lonely, though.





One thing I hate about it is that people assume I have cancer. I don't have cancer. And I feel bad that the people who have cancer feel bad for me because they assume I have cancer. I should get a lupus tattoo on my forehead. One of the volunteers was going around telling people about a cancer benefit they are doing on June 8th and strongly urged me to go. I wanted to be like, I really don't have cancer. But I said nothing, nodded and took the flyer. Another patient who was apparently here the last time I was asked if I was coming again in 2 weeks, I said no, 4, and then she asked how many I had left. And I wanted to say, I don't have cancer. But she does, and I feel bad. So I said, 3 or 4 and she said she hoped I felt better. I said I hoped she did too and I waved her goodbye. Not that my disease is any less urgent then cancer, I mean obviously I'm being treated the same way. It's just frustrating.





I should be done in about an hour. I'm really tired. I watched the first disc of Arrested Development which is a funny show. I'm all hooked up with the laptop, my headphones, and my ipod plugged in. When I get up to pee it's quite a production.








Jesus CHRIST why do I keep beeping!!


Today I've been on testosterone for 10 months. I can't believe it's almost been a year. I look at pictures from before and read my old journal and it's all so surreal. I feel so much better being myself. I pass 100% of the time and the only time I'm nervous is when I'm interacting with people who knew me before transition. But that's usually just me being paranoid, everyone has been great. And I'm realizing now that just because I assume people know that I transitioned I can't be positive. So if I'm seeing someone I haven't seen in awhile and they are expecting Sarah, I have to be prepared for that. Because I am DEFINITELY not her ;P


I've started to grow out my sideburns. And by grow out I mean you can almost see the fuzz ;P I'm hoping it'll look a little better when I get a haircut. There is nothing I can do about my predisone-induced moon face. I'm just glad the acne is better under control.

Thursday, April 24, 2008

Why I'm walking

My Participant Page

I didn't attend the wake or the funeral. I'm not sure who stayed with me on those days, but I remember my parents dressed in black, my mother clutching the black leather rose she was leaving in the casket. Later they told me how the Harley Davidson roar behind the funeral procession sounded and what it looked like to see one of the cousins, a grown man cry as he knelt over the casket. It took years for me to forgive myself for not attending the services. I was 10.

Mark was the crazy relative who brought the best presents and showed up after the party ended so he could have me to himself. My mother always said he was her favorite cousin because he was like her. He and my father got along great. They had the same taste in music and snake boots. He lived a reckless life full of women, drugs, and motorcycles making him one hard needle in a haystack to find. After one of his many disappearance acts, my mother tracked him down to make sure he attended their grandmother's anniversary party. She told him that it was imperative he attended because who knew how long Grammy would live for. Nobody thought he would die first.

I don't remember how my parents explained AIDS to me. I'm not sure they understood the difference between HIV/AIDS or anything about it, really. My mother began checking books out at the library. She became friendly with the people at AIDS Project Worcester. At nine years old I knew more about the disease than most people will ever know in their lifetime. I got a first hand account of the devastation it leaves.

He was living in a Hospice on Mission Hill in Boston. Every Tuesday and Thursday night my parents and I would pick up my Grandfather and visit Mark. In the beginning it was fun. We picked up dinner for everyone, usually Domino's or some form of Italian food because that's what he always wanted. He would joke around with me, always getting my doofy kid smile. He offered me juice boxes but I always declined. I hated Ecto coolor. I would always take the candy. As time wore on the visits became less pleasant. My parents explained to me that if I didn't want to go anymore I didn't have to. I spent a lot of time coloring in a room upstairs. I drew a picture with all different kids depicted, it was very diverse. I think I even had a wheelchair. I wrote something about accepting everyone no matter what. I gave it to the Hospice and they hung it up. I think they ended up sending it to Washington to be in an exhibit.

One day I told my parents I didn't want to visit Mark. He was almost completely non-responsive. They had to feed him through a tube. He didn't know who I was anymore. That weekend we went to an amusement park to celebrate my 10th birthday. I brought back a Harley Davidson pig that my dad won to give to Mark. We were all in the kitchen when the phone rang - nobody was surprised.

That first year his entire family participated in the AIDS Walk in Worcester. His mother had shirts made with his name on the back and a picture of a motorcycle. I walked with a giant stuffed Harley Davidson bear on my shoulders. My father joined a team and we walked the AIDS Boston Walk that year. And the next. I drew a picture of two guys that looked the same. Under one I wrote "He has AIDS." I listed all the things that were the same about the two boys and that we should love people with AIDS. My dad's team at work made my picture into their t-shirts that year.

And then we stopped walking. I got older, we got busy. My parents got divorced, I was in high school. Then I went to college. And although I didn't realize it, I carried my t-shirt from the first walk with me through all of life's many stages.

I made a pact with myself when I was 10 that as soon as I was legal to drink I would bring a can of Guinness to Mark's grave and pour it in. I've done it three times. His mother called my mother to ask where the can came from.

Tomorrow it will be 15 years since his death and I still think about him. How, even though he was reckless and contracted this awful disease, he used what was left of his life to make amends. He got clean and joined a sober biker club. He patched things up with his parents. He was involved with experimental drug testing so those to come after him would have a shot at a better life.

That is why I'm walking in the 2008 Boston AIDS Walk. I want to give back to an organization that fights the disease that took Mark away. Whenever things go wrong, especially family matters, my mother will go to his grave and yell at him for leaving too early. She said he always made things easier to deal with.

I would appreciate ANY donations. Really, if you want to pledge 1 cent, I'll happily pass it along! If you want to donate but don't want to do it online, they accept donations by check (mail) or even credit cards over the phone. And if you want to meet in a dark alley to shove cash into my pockets, I'll make sure they get that as well.

More information: AIDS Walk Boston
AIDS Action Committee of Massachusetts
Donate!

Tuesday, April 22, 2008

What's up all you loyal blog viewers! I apologize for my absence. Ironically I've been keeping up with my written journal on a pretty regular basis. Unfortunately for you my private thoughts usually stay private.

I recorded a sound clip of my voice. I didn't realize that it's been over 3 months since the last one. After my hospital stay I became disenchanted with the whole testosterone process because I had heavier health issues on my mind. I also don't want to be the guy who points out every new chin hair.

I love going to McDonalds in the morning for breakfast. If I get my timing correct the building is filled with older ladies and gents discussing various topics over coffee. There are two distinct sections: women and men. Although mixed couples are known to mingle among them. I don't go enough to identify specific people, but if I'm lucky I can eavesdrop on conversation. One time a man was explaining to his friend that he didn't like the way his wife made sausages. In which his wife replied, yeah, he doesn't like my sausages. He went on to explain that this morning he woke up early and couldn't sleep, so he made sausages! She said, and they were good. Obviously they didn't come to McDonalds for the food.

Because of Patriots Day trash pickup is delayed one day. Except nobody in Lowell knows that, so they all put their trash out last night. I walked away with a shit load of pepsi and coke points. I'm not a crazy trash digger. I do not go through closed trash bags. But if I see a cap through a clear plastic bag, I'm going in. How else can I get free game rentals from blockbuster and a pepsi beach towel?

Tomorrow is my 25th birthday. When I was younger I looked forward to my birthday all year long. Through a series of disappointments and the worst birthday ever (15) I don't get as excited as I used to. I usually try and brush it off as just another day because I'm scared if I get my hopes up they will be crushed. So I'm going into tomorrow with an open mind. My mother is driving up bright and early to take me to Maine. I don't know why. She wants to go to the Maine diner, walk on the beach, and go shopping. Hopefully it won't be too painful.

http://soundboard.com/sb/seanie314.aspx

I listened to all the recordings of my voice. Crazy shit, that is. It's amazing to me how something like hormones can literally change the makeup of your body and produce changes that are so vivid. And permanent, which is exciting. Anyway, it's off to cleaning.

Thursday, April 3, 2008

Music and More

I woke up at 9:30 this morning. The plan was to go to the library, pick up my prescriptions at CVS, and come home. While watching The Rachel Ray Show and eating last night's leftover Italian sub, I decided I still didn't feel well enough to go out. Unfortunately I made this decision after taking adderell. At least I was able to finish a 658 page novel.
I spent the day cleaning up around the apartment which tends to go to shit after chemo. I'm also in the process of going through old mix CDs from back in the day. I keep the tracks I want and toss the disc. Unless the mix is quality, then the CD goes back with all it's other CD friends.
I was singing along to Oasis and I realized why all emo bands are so whiny. They can't help it; it's the voice! You figure most emo bands get their big break when they are still in high school, so their voices aren't 100% mature. As I write this I realize I am asking you to stretch your minds to feel bad for the emo kids... in that case, fuck it. Emo bands whine. End of story. ;)
I love music. Let me rephrase. I love GOOD music. I love everything about it. The vibrations good bass makes through the floor, guitar riffs, good lyrics. I say GOOD because I'm not a fan of music done badly. It does me and society (mainly, our ears) a disservice. As I listen to the songs on these various CDs (some of which go back to my high school days) the music transforms me to the place I was when this cd was created. Some of those times aren't nice times, but they were part of my life so I don't mind visiting. Like this track, for instance. You Spin Me Right Round by Dope. A classic cover. Dope played the 1998 Locobazooka concert in Worcester, MA. My friends and I were sophomores in high school and my dad and his girlfriend took us to the show. Of course we parted ways right away and hooked up with other kids from school. I then got really high on what we found out later was laced weed and wandered around the grounds for hours. Luckily I had really good friends. I also saw a girl with both her nipples pierced mud wrestling. I've been fascinated by nipple piercings since then. See what memories one song can bring? ;)

Until I have something better to say!

Tuesday, April 1, 2008

Adventures in Chemotherapy

I found out today that beth israel has wireless internet. Score one for me! I surfed the internet for hours before finally popping in a movie. I checked Art School Confidential out of the library having no idea what it was about. I enjoyed it thoroughly. It's about a boy who wants to be a great artist so he goes to Strathmore Art School during the time there is a strangler afoot. He struggles with finding his own artistic voice while trying to get the girl. A surprising twist at the climax of this movie puts it at the top of my list. I highly recommend it.
6 hours of sitting with an IV attached is MUCH better with access to the world wide web. I also consumed at least 5 rice krispie treats, two bags of chips, and a sandwich. Having a laptop in front of my face also makes it easier to ignore my mother. Her stories are juvenile, immature, and make me feel like she's in high school. She's irresponsible and leads a dangerous lifestyle with her recreational drug usage and drunk driving escapades. The older I get the less mental neurons I can lend to her. The best I can do is keep myself sane in her presence and hope that when something happens to her I will be able to find the money to bury her. As cruel as that sounds, it's something that I have to think about for the future. She doesn't have a will, life insurance, a savings account, or anything set away. She constantly gets in debt and borrows from her retirement fund. With a full and part time job, I don't really know how this is possble. But it happens. Often.
Enough of that. Although that did seem to flow very freely with her being right in front of me talking. Speaking of flowing freely (not peeing) last week I started to write my first piece in awhile. I was astounded at how quickly an hour went by and how much I had written. A full 2 hours passed when I finally packed up and went home. I've begun to put it into microsoft word. I can't decide if I want it in essay form or if I'm going creative non-fiction on it's ass. The best part is that it's a story about the four month time span I worked at Friendly's when I was 16. Yeah I know, crazy shit.
Well, time to take out the IV! Hooray! Happy April :)