One week ago today I had my 10th round of chemo – Cisplatin/Doxorubicin. Cisplatin is the rough guy that enjoys knocking me on my ass. It’s hard to avoid feeling ill during and after the drug. If there’s one thing they encourage, it’s LOTS of liquids to flush the drugs out of your system. Sounds easy but it’s not when everything you place into your mouth (including water) makes you want to throw up. Knowing this, we asked if we could take my IV bag buddy “Fred” home for 2 extra days of hydration. You can bring him home as long as there is someone that is willing to pull the needles out after you’re done. My mom shrieks and flails her arms in the air at the thought of it, but luckily my sister has just finished nursing school! How convenient. So we brought Fred home and Michelle came by to yank the needle (thanks Shell). I think the extra hydration helped a little, but I can’t lie – I still feel like garbage. I feel like there are a ton of books on my chest, when i walk it's hard to breathe. I've had this in the past, it's a side effect of the chemo.
This morning I had to go to my local primary care doctor to see how my blood counts are doing. The results came back very low, as expected. However the thing to look out for is a fever, so far I’ve managed to get a fever each time after having Cisplatin; which means you have to be admitted to the hospital and hooked up to antibiotics and fluids. So far so good, fingers crossed.
A few weeks ago they removed my makeshift “cast” and replaced it with some other contraption. That’s really the best way to describe it: a contraption. It’s this (hard) plastic white arm gear that snaps together over your upper arm, then there’s this sweet velcro piece that comes over my shoulder, up across my chest, and sticks together on the other side of my neck. It almost resembles protective football gear. Versace watch out.
I kid. I know it’s not meant to be fashionable. At first it was really uncomfortable but now I’ve gotten used to it. I no longer wear the sling so I am forced to use my arm a bit more, which is a good thing. If you don’t use your muscles for a long time your body simply forgets how to use them. It’s really scary – it happened to me. After the new gear was placed my surgeon told me to try and move my lower arm up and down a few times a day to keep the muscle active. I went home and tried. No dice. It just wouldn’t move, pure dead weight. It wasn’t even that it hurt it just did not want to move. But days have passed and I can now move it again little by little…phew.
Well originally my surgery should have been completed by now. It was scheduled for July 25th but the break has since shifted everything around.
Saw my surgeon again before leaving on Friday to discuss my arms progress. Dr. Athanasian is such a character. He is quiet but has so much presence. When he walks into the room you automatically feel the need to fix your posture and shake his hand. Our visit was pretty short this time, he looked at a new xray of my arm and reiterated how wonderfully the tumor is reacting to the chemo. He looked at the break as well, but is not as happy with the progress of that. It’s healing, but very slowly. I knew this, because when I would get up from sitting I could hear and feel the bones shift. The thought of it makes me nauseous – what else is new. So he decided to give my bones some more time to heal, and to do some more chemo in the meantime. Sounds like a plan to me. The key is to not break anything else during the surgery. The more bone that breaks, the greater chance there is of cancerous cells spreading – we do not want that. He also mentioned that in one of my next visits I will be meeting with the plastic surgeon as well. I’ll explain the surgery in detail in another posting, but here I will just say that it is intense and the room will be filled with loads of surgeons. The estimated time of my surgery is 10 – 12 hours. I’m still in shock about that one. Depending on my progress, my surgery will either be the last week of August, or the first week of September.
Ah, we did have another encounter with the infamous Dipsy Doodle. This time she had wandered over to the out-patient side. She wheeled her blood pressure machine over to us, big dopey eyes all lit up with an open smile, “HEY!! What are you guys doing here!?”…hmm well…
Anyway, overall I’m doing well. A little bored and a little house trapped – but otherwise ok! Once I’m feeling better some of you guys should come watch movies with me.
Tuesday, July 31, 2007
Saturday, July 7, 2007
Hiatus
I feel like I am constantly being tested, like there is some bigger force laughing at me and throwing hardballs at my face.
Two weekends ago Josh and I took a trip to Albany so that he could sign his lease. He’ll be going to Albany Law starting in August and so I wanted to see his place and the town that he’ll be living in. It was a gorgeous day and drive. We pull up to the house, park, I get out of the car, turn around, and close the car door with my right arm…
…SNAP! I feel the bones in my arm glide past each other and settle themselves into an awful place. The sensation I felt is one I can’t even explain, I didn’t see stars but I froze for a while and knew right away what had happened and began screaming to Josh. By the time the paramedics came I was sobbing and shaking. And not so much because of the pain but because of what my surgeon told me in my consultation; “Whatever you do, do NOT break this arm or it will make it very difficult to save through surgery. “ His words just kept on spinning and spinning around in my head as they pumped me up with morphine and a stranger was rubbing my back.
They took me to the hospital and then they had me transported to Sloan. Being that far away from home in a hospital that doesn’t really know Oncology or my case had me pretty frustrated with everyone that handled me. “Oh its just a broken arm don’t worry we’ll cast you right up.” No, you don’t understand…
My surgeon came by my hospital bed the next morning to talk to me. He told me news that made me sick to my stomach. He explained that I broke my arm right across the tumor, which means that cancer cells are free to roam about my body and that I now have a greater chance of the cancer returning after my full surgery and treatment. He also told me that he will still try and save my arm but now there is a greater chance that it may not be successful and that amputation could become more of a possibility.
I lost it.
My Oncologist heard that I was having a hard time with the news and came by to comfort me. He told me to calm down because the case described by my surgeon is more likely for someone that hasn’t gone through chemo yet. I’d had 7 rounds of chemo at the time this happened. Some people even discover that they have Osteosarcoma by doing simple things like reaching up to put dishes away which results in a break. The bone on/near the tumor just becomes so brittle.
I will lighten this up a little…
I had a full round of tests done in prep for my surgery. This is routine to see how your tumor is reacting to chemo, and also to see if the cancer has spread. They do x-rays, a chest scan, and a full bone scan. The bone scan is the most telling for my condition since I have bone cancer. The wait for the results of these scans are pure hell.
Yesterday I met up with my surgeon again. He has a special office where he meets with patients. There are only a few chairs, awkward lighting, and a computer on his desk with a stack of dusty magazines that I would bet haven’t been read in years. The wait was all too quiet and I felt like my heart was going to jump out of my chest.
He came in, “Hey stranger!” and shook my hand. He sat down with his assistant and said “I have good news”, and smiled. My heart fell back into my chest. He said my bone scan was clean and that he is so happy with the progress of my arm. The tumor has shrunk even more and this will make the surgery so much easier to perform. He mentioned that even though I have a break, he is very positive and is confident that he should be able to work around the break. The only somewhat negative is that I am pretty much on house arrest until and after the surgery. I can deal with that. Also I have a nodule in my lungs that we are still uncertain of. They saw this early on too, but even “normal” people get nodules on their lungs that are absolutely nothing. He said he is not too concerned with that right now, but that we will look at it closer after my arm surgery.
Mom, dad and I left his office with color in our cheeks.
Lots of crazy things went on in the hospital for the 11 days that we were there, but the most memorable is from a woman we’ve named Dipsy-doodle. They have people that come in every few hours to check your vitals while you’re in-patient. They wake you up in the middle of the night with no shame to poke your ear with a thermometer, put that odd clipper on your finger to measure your oxygen level, and take your blood pressure. They had to take my blood pressure on my leg rather than my arm because both are out of commission. The right being broken and the left with huge bruises, swollen & sore, and a scary Amazon-rainforest-looking rash from my veins being infiltrated by the IV’s being left in too long. The crease of my arm is so bruised and punctured – I resemble a heroin addict.
Back to Dipsy-doodle…
DD: [Places the blood pressure thing around my leg] “WOW!!! You have the smoothest legs! They are so soft. What razor do you use??
Me: [stares at her quietly]: I don’t shave.
DD: [Eyes widen] Oh where do you get them waxed?
Me: I don’t.
DD: [“thinks” some more] Oh, laser hair removal?
Me: [Pause. Deep breath.] CHEMOTHERAPY.
DD: [Smacks her head] OHHH hehe.
Pardon my French but what a fucking dolt. You work at a cancer hospital, are you serious?
I couldn't help but share this with my nurses. I didn't know her name but they knew exactly who I was talking about right away and were cracking up. There are more incidents with her but this was the best.
Anyway, keep throwing hardballs at my face. I’ve got a big ‘ol mitt.
Two weekends ago Josh and I took a trip to Albany so that he could sign his lease. He’ll be going to Albany Law starting in August and so I wanted to see his place and the town that he’ll be living in. It was a gorgeous day and drive. We pull up to the house, park, I get out of the car, turn around, and close the car door with my right arm…
…SNAP! I feel the bones in my arm glide past each other and settle themselves into an awful place. The sensation I felt is one I can’t even explain, I didn’t see stars but I froze for a while and knew right away what had happened and began screaming to Josh. By the time the paramedics came I was sobbing and shaking. And not so much because of the pain but because of what my surgeon told me in my consultation; “Whatever you do, do NOT break this arm or it will make it very difficult to save through surgery. “ His words just kept on spinning and spinning around in my head as they pumped me up with morphine and a stranger was rubbing my back.
They took me to the hospital and then they had me transported to Sloan. Being that far away from home in a hospital that doesn’t really know Oncology or my case had me pretty frustrated with everyone that handled me. “Oh its just a broken arm don’t worry we’ll cast you right up.” No, you don’t understand…
My surgeon came by my hospital bed the next morning to talk to me. He told me news that made me sick to my stomach. He explained that I broke my arm right across the tumor, which means that cancer cells are free to roam about my body and that I now have a greater chance of the cancer returning after my full surgery and treatment. He also told me that he will still try and save my arm but now there is a greater chance that it may not be successful and that amputation could become more of a possibility.
I lost it.
My Oncologist heard that I was having a hard time with the news and came by to comfort me. He told me to calm down because the case described by my surgeon is more likely for someone that hasn’t gone through chemo yet. I’d had 7 rounds of chemo at the time this happened. Some people even discover that they have Osteosarcoma by doing simple things like reaching up to put dishes away which results in a break. The bone on/near the tumor just becomes so brittle.
I will lighten this up a little…
I had a full round of tests done in prep for my surgery. This is routine to see how your tumor is reacting to chemo, and also to see if the cancer has spread. They do x-rays, a chest scan, and a full bone scan. The bone scan is the most telling for my condition since I have bone cancer. The wait for the results of these scans are pure hell.
Yesterday I met up with my surgeon again. He has a special office where he meets with patients. There are only a few chairs, awkward lighting, and a computer on his desk with a stack of dusty magazines that I would bet haven’t been read in years. The wait was all too quiet and I felt like my heart was going to jump out of my chest.
He came in, “Hey stranger!” and shook my hand. He sat down with his assistant and said “I have good news”, and smiled. My heart fell back into my chest. He said my bone scan was clean and that he is so happy with the progress of my arm. The tumor has shrunk even more and this will make the surgery so much easier to perform. He mentioned that even though I have a break, he is very positive and is confident that he should be able to work around the break. The only somewhat negative is that I am pretty much on house arrest until and after the surgery. I can deal with that. Also I have a nodule in my lungs that we are still uncertain of. They saw this early on too, but even “normal” people get nodules on their lungs that are absolutely nothing. He said he is not too concerned with that right now, but that we will look at it closer after my arm surgery.
Mom, dad and I left his office with color in our cheeks.
Lots of crazy things went on in the hospital for the 11 days that we were there, but the most memorable is from a woman we’ve named Dipsy-doodle. They have people that come in every few hours to check your vitals while you’re in-patient. They wake you up in the middle of the night with no shame to poke your ear with a thermometer, put that odd clipper on your finger to measure your oxygen level, and take your blood pressure. They had to take my blood pressure on my leg rather than my arm because both are out of commission. The right being broken and the left with huge bruises, swollen & sore, and a scary Amazon-rainforest-looking rash from my veins being infiltrated by the IV’s being left in too long. The crease of my arm is so bruised and punctured – I resemble a heroin addict.
Back to Dipsy-doodle…
DD: [Places the blood pressure thing around my leg] “WOW!!! You have the smoothest legs! They are so soft. What razor do you use??
Me: [stares at her quietly]: I don’t shave.
DD: [Eyes widen] Oh where do you get them waxed?
Me: I don’t.
DD: [“thinks” some more] Oh, laser hair removal?
Me: [Pause. Deep breath.] CHEMOTHERAPY.
DD: [Smacks her head] OHHH hehe.
Pardon my French but what a fucking dolt. You work at a cancer hospital, are you serious?
I couldn't help but share this with my nurses. I didn't know her name but they knew exactly who I was talking about right away and were cracking up. There are more incidents with her but this was the best.
Anyway, keep throwing hardballs at my face. I’ve got a big ‘ol mitt.
Saturday, June 9, 2007
Round 4
Round 4…a week late. Unfortunately I had to push this week back because I had some lip/dental issues I had to take care of before the Cisplatin came in and made a royal mess of my mouth. Methotrexate treated me good the first time, but my 2nd round of it – not so good. The drug can settle in pockets of your body, for me it was my bottom lip. Swollen/huge/peeling/bright red (I’m talking 4 year old with a cherry ice pop in mid-July). My bottom lip has always been fuller than my top so you can imagine how frightening I was looking. Not only that, but it hurt! It is still not completely healed but I had no choice but to get some dental work done before going in for chemo this week.
Funny story…my friend Gina and I felt like having our summer toes pampered so we went and got pedicures. Here I am, all self conscious about my monkey-mouth but I thought hell, I feel like having cute toes. I am not trying to impress anyone. So we finish up, are sitting at the nail dryers and I notice this woman staring at me. Blatant stare-a-thon. I figured she must have noticed my headscarf or maybe my metaport and wanted to speak to me about cancer or something. Finally she interrupts us…”excuse me miss, I just have to tell you that you have got the most gorgeous mouth I have ever seen. And that smile! I am an art teacher and let me just tell you, you have a perfect T-line, all of your features are lined up perfectly and THAT MOUTH! It’s gorgeous! You are very blessed.” I guess I didn’t know how to react or was just in so much shock because in the car ride after Gina explained that I laughed in the woman’s face like a crazy person. I remember saying “HAHAHwwhhhat!!?? They are swollen and chapped and gross!!” And she just kept saying to me “don’t tell me that, no one needs to know that – I just wanted you to know how gorgeous I thought your lips were, I’d love to draw you.” I stopped laughing at the woman and took her ironic compliment. What I really felt like saying to her was “would you mind following me around for the next 7 months and please compliment me like that whenever I am feeling miserable and self-conscious?” Thank god for people like that. She made my day. Another lesson in not worrying about what people are thinking.
Back to the chompers…last Saturday was rough, but I got through it. Two cavities filled and two teeth pulled. Normally my dentist would have tried to save those two teeth but with the harshness of the chemo and the infection that were in them, it would have been a lost cause. I would have never healed. Luckily they are not my two front teeth or anything ☺. The pain wasn’t so bad in the teeth or gums but more so in the yanking/pulling of my poor cherry-ice-in-July lips. Ouch. I must say I have some luck with the people that take care of me. My dentist left it up to me as to when I wanted to make my appointment, pushed all his time aside and spent 3 hours on me. By the 4th tooth we both needed a break, I do need to get one more tooth pulled at some point. The office also wrote me a very nice letter and took 30% off of the cost of the work that was done. Here comes another plug - go see Dr. Midlige in Mountain Lakes, awesome guy.
Made it into NY for a dreaded round of Cisplatin/Doxorubicin on Tuesday and came home last evening. They drug you up good when you are on Cisplatin because it makes you 24/7 nauseous. I spent most of the week asleep and/or out of it. This time around I am going to be smarter about this drug. I need to force myself to drink at least 3 liters a day to flush this poisoneous life-saver out of my body. The first time I just slept and completely dehydrated myself to the point of a bad fever and was slapped inpatient for 5 grueling days. I definitely don’t want to go through that again.
Yesterday I had another x-ray of my upper arm and met with the surgeon for a 2nd time.Good GREAT news, the chemo is working ☺ (my smile is much bigger than this emoticon can show). You can see the difference in my shoulder and the surgeon can see it in the x-ray. I can feel it, too. I no longer have shooting pains down my arm, and my fingers no longer go numb. I feel very fortunate because there is a good amount of people/tumors that do not respond well (if at all) to chemotherapy. Thank God. If I weren’t responding to it, they would need to move up my surgery ASAP. I’m glad this is not the case, because my surgeon explained the situation very bluntly “I can save your arm, but the chemo will save your life”. And I am all about life.
Every year Sloan has a “Pediatric Prom” which is the cutest idea ever. Department stores like Bloomingdale’s donate tiny prom dresses that all of the kids can try on for the event, then they get to keep it when it’s over. It is a huge deal for the kids, they even broadcasted it on the news. Unfortunately I couldn’t snoop around the prom with my camera because I was asleep most of the day, but I woke up and saw familiar faces on the TV. My mom went down with my camera and caught a few shots:
That recaps my week. I can’t thank you all enough for your cards, emails, gifts, etc. etc. I am SO overdue with my thank you cards and return emails, so I apologize about that. But I will get to them. Love you's.
Funny story…my friend Gina and I felt like having our summer toes pampered so we went and got pedicures. Here I am, all self conscious about my monkey-mouth but I thought hell, I feel like having cute toes. I am not trying to impress anyone. So we finish up, are sitting at the nail dryers and I notice this woman staring at me. Blatant stare-a-thon. I figured she must have noticed my headscarf or maybe my metaport and wanted to speak to me about cancer or something. Finally she interrupts us…”excuse me miss, I just have to tell you that you have got the most gorgeous mouth I have ever seen. And that smile! I am an art teacher and let me just tell you, you have a perfect T-line, all of your features are lined up perfectly and THAT MOUTH! It’s gorgeous! You are very blessed.” I guess I didn’t know how to react or was just in so much shock because in the car ride after Gina explained that I laughed in the woman’s face like a crazy person. I remember saying “HAHAHwwhhhat!!?? They are swollen and chapped and gross!!” And she just kept saying to me “don’t tell me that, no one needs to know that – I just wanted you to know how gorgeous I thought your lips were, I’d love to draw you.” I stopped laughing at the woman and took her ironic compliment. What I really felt like saying to her was “would you mind following me around for the next 7 months and please compliment me like that whenever I am feeling miserable and self-conscious?” Thank god for people like that. She made my day. Another lesson in not worrying about what people are thinking.
Back to the chompers…last Saturday was rough, but I got through it. Two cavities filled and two teeth pulled. Normally my dentist would have tried to save those two teeth but with the harshness of the chemo and the infection that were in them, it would have been a lost cause. I would have never healed. Luckily they are not my two front teeth or anything ☺. The pain wasn’t so bad in the teeth or gums but more so in the yanking/pulling of my poor cherry-ice-in-July lips. Ouch. I must say I have some luck with the people that take care of me. My dentist left it up to me as to when I wanted to make my appointment, pushed all his time aside and spent 3 hours on me. By the 4th tooth we both needed a break, I do need to get one more tooth pulled at some point. The office also wrote me a very nice letter and took 30% off of the cost of the work that was done. Here comes another plug - go see Dr. Midlige in Mountain Lakes, awesome guy.
Made it into NY for a dreaded round of Cisplatin/Doxorubicin on Tuesday and came home last evening. They drug you up good when you are on Cisplatin because it makes you 24/7 nauseous. I spent most of the week asleep and/or out of it. This time around I am going to be smarter about this drug. I need to force myself to drink at least 3 liters a day to flush this poisoneous life-saver out of my body. The first time I just slept and completely dehydrated myself to the point of a bad fever and was slapped inpatient for 5 grueling days. I definitely don’t want to go through that again.
Yesterday I had another x-ray of my upper arm and met with the surgeon for a 2nd time.
Every year Sloan has a “Pediatric Prom” which is the cutest idea ever. Department stores like Bloomingdale’s donate tiny prom dresses that all of the kids can try on for the event, then they get to keep it when it’s over. It is a huge deal for the kids, they even broadcasted it on the news. Unfortunately I couldn’t snoop around the prom with my camera because I was asleep most of the day, but I woke up and saw familiar faces on the TV. My mom went down with my camera and caught a few shots:
Balloons balloons, party party
My nurse, Michelle. (my absolute favorite woman there)
Dr. Meyers (One of my oncologists. How great is that little yellow crooked polka-dot bow tie!?)
My nurse, Michelle. (my absolute favorite woman there)
Dr. Meyers (One of my oncologists. How great is that little yellow crooked polka-dot bow tie!?)
That recaps my week. I can’t thank you all enough for your cards, emails, gifts, etc. etc. I am SO overdue with my thank you cards and return emails, so I apologize about that. But I will get to them. Love you's.
Wednesday, May 23, 2007
Round 3
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! :]
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 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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