Week two of Methotrexate is almost over. I'm happy to report that i have kicked it in the butt again. You have to monitor yourself very carefully when you're on this drug, measuring your "input" and "output", making sure you take enough sodium bicarb pills to even out your PH levels, taking your "rescue pill" to create a barrier between the drug and your healthy cells so that your body does not shut down. I have learned a LOT here already, the body and medical industry amaze me.
Luckily, i have completely flushed the drug out of my body a day early, which is great. This means that i do not have to drag "Fred" home. Here in pediatrics they call the overnight pump/IV bag "Fred" for the children. He's placed in a stylish Sloan-Kettering blue canvas backpack. Fred and i have become very close. When he runs during the night, the sound of the pump makes it sound like he's breathing. Me and Fred are buds.
Any males reading may want to skip over this part. Chemo puts you into early menopause. I am still really upset about this, this means that i only have a 50/50 chance of having children after my treatment. I have always wanted to adopt at least one kid anyway, but i'd like to be able to have one of my own too. It's not entirely out of the question, but for a woman it's devastating to even think that there is a chance that i will be unable to. Even though the Dr.'s mentioned that i can stop taking my birth control pill, i have continued to take it, and even refilled my RX today. I am somehow trying to trick my my body into ignoring the fact that there is chemo in my body. Well maybe it's somewhat working? I had horrid PMS all week and got my "friend" yesterday. On top of that, the early menopause has started. Try PMS-ing and having hot flashes at the same time - holy hell! I feel bad for my parents and anyone else who's been around me for the past few days, lol. Mooooooody much?
Since i am doing well, i am going to get out of bum-wear tonight, put some jeans on and go out to eat with my parents. It'll be nice to not be laying in bed all day and night. Speaking of which...
I had my metaport surgery on Friday. They removed the temporary lines (where they take blood and inject chemo) and placed in a double metaport. This way you don't have wires hanging all over the place, and when they access it - they just push a needle through the top layer of your skin. They have cream that numbs it first so it's not so bad. The size of the device is about two-quarters wide and the height of a thimble. I woke up from surgery in a lot of pain. It feels as if they've implanted a brick under my skin. They place it under the skin beneath your collarbone, where there is not a lot of fat. It's feeling better today but i am pretty bruised up. The worst part is that there is a small percentage of people who have "faulty" wiring with these ports. Can you guess who falls into that percentage? Yours truly. The only way that my port works is if i am laying flat on my back. This means that when i sit up to eat or run to the bathroom, my pump beeps and the meds stop being delivered. I am trying not to let it get to me, but it's hard. Just another bump in the road, i will keep on truckin'.
Oh yeah, my head is officially buzzed. I was surprised that i was able to look into the mirror the entire time, and not cry at all. I think it's because i realize that this is the beginning of my path to recovery, and so to watch it go is not so bad. I will have plenty of time to have fun hair again after my treatment is over. My hair lady is so amazing. She came in on Sunday when the shop is closed, and opened it up just for me so that i did not have to have a ton of people around when she buzzed my head. On top of that, she took the time out of her busy schedule (running around in prep for her daughters graduation) to do this for me. Took my wig, chopped it up and dyed it and has not charged me a penny since all of this started. Oh i love my Maria. Since i am no longer a walking advertisement for her hair creativity and expertise (i am not shitting you that i would get stopped every 5 seconds) i just want to post here that if anyone is looking for a new colorist/stylist - go see Maria in Millburn, the name of the salon is Touche. It's right in the center of town, across from the park.
Even though i miss my hair, I must say it is nice to not have to shave every day! Vanity is fun but it is nice to have a break. I did put a tiny bit of make-up on this morning so as not to look like a corpse, and everyone at the hospital said "wow, you look great today! You must be feeling well" Heh, funny what a little foundation and eyebrow pencil can do.
Anyhoo, i can't wait to come home tomorrow! :]
Wednesday, May 23, 2007
Wednesday, May 16, 2007
Round 2
Back to NY. Monday I had my first dose of High-Dose Methotrexate (made a correction to my first post - i swapped the drug names, whoops) and i am so happy to report that i'm doing awesome. This drug is a bit weaker than the first two, so my blood counts are up and i'm feeling good and eating like a pig. I lost about 10 lbs. after my first treatment so this week i am taking advantage of my non-nausea and am trying to bring my weight back up.
I do love this hospital but the one thing i am having trouble tolerating are the vast majority of smells. The smell of coffee, alcohol swabs, and the absolute worst - saline. Before they draw blood from your lines or inject you with chemo, they always have to flush your lines with saline to clean them out. As soon as they inject it, you get a rush of the scent and taste in your nose, mouth and even eyes. It is the strangest sensation ever. I read a few stories of cancer patients that said the exact same thing. I always used to love the smell of "clean", sterile hospital-type things. But now, yyyuck. I guess i am associating these smells with the feeling of pain and the overall reason that i am here.
More and more hair is falling out, and so this weekend i think i am getting rid of it all. I wake up and find it in my nose, eyes, socks, pants etc. and it is just itchy and depressing (you guys know i am a hair fanatic). So it will be hats and scarves from now on. Also, the chemo effects your tastebuds. Anyone who knows me well enough knows my love for chocolate. Guess what guys? The thought of it makes me sick to my stomach! I can't believe it myself. All i find myself craving (candy-wise) are really gross sugary children's candy. Like gushers fruit snacks and lifesavers and all of the candy i've always despised because it tastes like pure sugar. How very strange...
I am getting more and more comfortable here in NY and at the hospital. IV machines beeping and children screaming start to swirl together and just form a backdrop of the daily visits. On my first day of chemo i was all set up in my room, IV started dripping, and all of a sudden we hear a child screaming bloody murder. My nurse comes in and says "don't worry, we are not murdering children over there! It is just the chemo". Turns out there is a type of chemotherapy that the nurses can inject directly into tumors with a needle and it is very painful for the children since it attacks the tumor immediately. They keep these rooms far off but the shreaking bounces all over and down the hallways. I can't put the sound to words but trust me, it is something you'd never want to hear. I walk down the hallways and study each patient, fingers crossed that i will see their hair start to grow back some day soon and that those tears will subside.
Just wanted to give a quick update to let you know that i'm doing well, it's nap time for me. I miss you all!
I do love this hospital but the one thing i am having trouble tolerating are the vast majority of smells. The smell of coffee, alcohol swabs, and the absolute worst - saline. Before they draw blood from your lines or inject you with chemo, they always have to flush your lines with saline to clean them out. As soon as they inject it, you get a rush of the scent and taste in your nose, mouth and even eyes. It is the strangest sensation ever. I read a few stories of cancer patients that said the exact same thing. I always used to love the smell of "clean", sterile hospital-type things. But now, yyyuck. I guess i am associating these smells with the feeling of pain and the overall reason that i am here.
More and more hair is falling out, and so this weekend i think i am getting rid of it all. I wake up and find it in my nose, eyes, socks, pants etc. and it is just itchy and depressing (you guys know i am a hair fanatic). So it will be hats and scarves from now on. Also, the chemo effects your tastebuds. Anyone who knows me well enough knows my love for chocolate. Guess what guys? The thought of it makes me sick to my stomach! I can't believe it myself. All i find myself craving (candy-wise) are really gross sugary children's candy. Like gushers fruit snacks and lifesavers and all of the candy i've always despised because it tastes like pure sugar. How very strange...
I am getting more and more comfortable here in NY and at the hospital. IV machines beeping and children screaming start to swirl together and just form a backdrop of the daily visits. On my first day of chemo i was all set up in my room, IV started dripping, and all of a sudden we hear a child screaming bloody murder. My nurse comes in and says "don't worry, we are not murdering children over there! It is just the chemo". Turns out there is a type of chemotherapy that the nurses can inject directly into tumors with a needle and it is very painful for the children since it attacks the tumor immediately. They keep these rooms far off but the shreaking bounces all over and down the hallways. I can't put the sound to words but trust me, it is something you'd never want to hear. I walk down the hallways and study each patient, fingers crossed that i will see their hair start to grow back some day soon and that those tears will subside.
Just wanted to give a quick update to let you know that i'm doing well, it's nap time for me. I miss you all!
Thursday, May 10, 2007
It starts here
I feel most creative and full of words when i'm going through hard times. Because of this, i've decided to create a blog to document one of the biggest experiences i will ever have in my life. I want to use this to share my experience with others, and also to keep friends and family updated on my quest.
On 4/13/07, i was diagnosed with cancer - Osteosarcoma (or osteogenic sarcoma) of the right shoulder/arm. Sarcoma is a very rare form of cancer, it is actually a pediatric cancer in which children battle. It occurrs in the connective tissues and joints in the body.
It all started with a tightness in my right arm muscle, nothing that was painful - it just felt very tight and i found it difficult to stretch out. A month later the tightness subsided and i started to notice some pain and swelling in my shoulder, and eventually noticed that i could do less and less with my right arm without pain. I knew something was wrong...
Everyone kept assuring me that it's probably just a torn rotator cuff or a pulled muscle. I was hoping for this too, but in the back of my mind i always knew it was something more serious because i am not the most active person, and i knew that i didn't do anything physical to cause such discomfort. One day i was talking to my sister and i jokingly/nervously diagnosed myself saying "watch i have a cancerous tumor" sure enough...
Needless to say, i am very careful with my words now ;)
Sarcoma is very random and rarely genetic. They really have no reason for it happening, and haven't done all that much research on it because it is so rare. However there are survivors and you better believe that i will be one of them.
In all honestly this still doesn't feel real, and i feel like time has stopped. There is no difference between Sunday night and Friday afternoon anymore, all I am focused on is the finish line and what i need to do to get there. I quickly learned that there is no time to feel sorry for yourself when you are in a sitution like this. I took a week or so to be incredibly upset, but now it is time to fight and get this s*** out of me.
I am so lucky to have such an amazing support system by my side. My friends, family, boyfriend, and "co-workers" have shown nothing but love and positive thoughts for me. It helps tremendously and i can't thank you enough. You keep me going.
I am being treated by one of the best cancer centers in America: Memorial Sloan-Kettering in NYC. Since i am a Sarcoma patient, i am being treated in the pediatric area. The area is bright and colorful with a young upbeat staff. There are clowns and craft time and kids everywhere. It does lift my spirits compared to the uncomfortable white walls of the adult cancer area...but at the same time the irony of children laughing and playing with tubes hanging out and no hair breaks my heart. The fact that children have to go through this overwhelms me and i end up being the big baby in the pediatric area! It gets easier each time i go, and my goal is to be the solid big sister there.
They informed me of the seriousness of this disease and grade of my cancer, but also assured me of the confidence in their treatment and surgical expertise. The doctors and nurses i have met are all amazing and incredibly positive. I will undergo 10 weeks of chemo, surgery will happen around the July timeframe, and then there will be 20 weeks of follow-up chemotherapy.
I had my first dose of chemo (High Dose Methotrexate correction: Cisplatin/Doxorubicin) almost two weeks ago, and it hit me hard. The hospital gives you infortmative cards on each of the drugs you receive, and i believe i caught every side-effect possible. I won't get into the details but i can firmly say that i've never felt so awful in all my life. However, this week i am feeling 100% - it seems like it will be waves of ups & downs.
I remember seeing cancer patients previous to my diagnosis and thinking "wow, this is horrible these people look so lifeless" thinking that the cancer is what was causing the constant look of fatigue and pain. When really, it is the chemotherapy. I'm sure there are some cases where the cancer is extremley painful, but for the most part the chemo does it. It really does feel like poison in your body, but i just keep in mind that if i feel this awful - then my tumor is feeling that as well. And that is a really good thing.
Two days ago my hair started falling out, it is sad, but i know it will grow back. Goodbye flat iron (for now!).
I think that's all for now. I just wanted a way of updating everyone all at once, so i will continue to update this page as much as possible. I was thinking about doing a YouTube Vlog of this experience as well, but i am still thinking about it. Since i can't imagine myself talking to a camera without laughing, but who knows - i may go for it. I will also try to document this through photography as well, however you are not allowed to bring camera's into the treatment areas, so i guess i can't bring my big Canon SLR camera, eh? Maybe i can sneak my small digital camera in...we'll see.
Thank you all for your love and support, don't you worry about me. I will beat this. <3
On 4/13/07, i was diagnosed with cancer - Osteosarcoma (or osteogenic sarcoma) of the right shoulder/arm. Sarcoma is a very rare form of cancer, it is actually a pediatric cancer in which children battle. It occurrs in the connective tissues and joints in the body.
It all started with a tightness in my right arm muscle, nothing that was painful - it just felt very tight and i found it difficult to stretch out. A month later the tightness subsided and i started to notice some pain and swelling in my shoulder, and eventually noticed that i could do less and less with my right arm without pain. I knew something was wrong...
Everyone kept assuring me that it's probably just a torn rotator cuff or a pulled muscle. I was hoping for this too, but in the back of my mind i always knew it was something more serious because i am not the most active person, and i knew that i didn't do anything physical to cause such discomfort. One day i was talking to my sister and i jokingly/nervously diagnosed myself saying "watch i have a cancerous tumor" sure enough...
Needless to say, i am very careful with my words now ;)
Sarcoma is very random and rarely genetic. They really have no reason for it happening, and haven't done all that much research on it because it is so rare. However there are survivors and you better believe that i will be one of them.
In all honestly this still doesn't feel real, and i feel like time has stopped. There is no difference between Sunday night and Friday afternoon anymore, all I am focused on is the finish line and what i need to do to get there. I quickly learned that there is no time to feel sorry for yourself when you are in a sitution like this. I took a week or so to be incredibly upset, but now it is time to fight and get this s*** out of me.
I am so lucky to have such an amazing support system by my side. My friends, family, boyfriend, and "co-workers" have shown nothing but love and positive thoughts for me. It helps tremendously and i can't thank you enough. You keep me going.
I am being treated by one of the best cancer centers in America: Memorial Sloan-Kettering in NYC. Since i am a Sarcoma patient, i am being treated in the pediatric area. The area is bright and colorful with a young upbeat staff. There are clowns and craft time and kids everywhere. It does lift my spirits compared to the uncomfortable white walls of the adult cancer area...but at the same time the irony of children laughing and playing with tubes hanging out and no hair breaks my heart. The fact that children have to go through this overwhelms me and i end up being the big baby in the pediatric area! It gets easier each time i go, and my goal is to be the solid big sister there.
They informed me of the seriousness of this disease and grade of my cancer, but also assured me of the confidence in their treatment and surgical expertise. The doctors and nurses i have met are all amazing and incredibly positive. I will undergo 10 weeks of chemo, surgery will happen around the July timeframe, and then there will be 20 weeks of follow-up chemotherapy.
I had my first dose of chemo (
I remember seeing cancer patients previous to my diagnosis and thinking "wow, this is horrible these people look so lifeless" thinking that the cancer is what was causing the constant look of fatigue and pain. When really, it is the chemotherapy. I'm sure there are some cases where the cancer is extremley painful, but for the most part the chemo does it. It really does feel like poison in your body, but i just keep in mind that if i feel this awful - then my tumor is feeling that as well. And that is a really good thing.
Two days ago my hair started falling out, it is sad, but i know it will grow back. Goodbye flat iron (for now!).
I think that's all for now. I just wanted a way of updating everyone all at once, so i will continue to update this page as much as possible. I was thinking about doing a YouTube Vlog of this experience as well, but i am still thinking about it. Since i can't imagine myself talking to a camera without laughing, but who knows - i may go for it. I will also try to document this through photography as well, however you are not allowed to bring camera's into the treatment areas, so i guess i can't bring my big Canon SLR camera, eh? Maybe i can sneak my small digital camera in...we'll see.
Thank you all for your love and support, don't you worry about me. I will beat this. <3
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