cuddleparty
07-22-2009, 09:24 PM
Ok.. I hear Adam has parotid cancer and I'm a total nerd.. I had to sign up here because I want my message to him to be heard..
ADAM! Listen UP!
I had the same type of cancer about 9 years ago - I was 23 years old at the time. I had a tumor in my right sub-mandibular... I always feel very smart when I say that. lol!
I had never heard of parotid cancer until a few years previous to my own ordeal. My Mom was diagnosed with a parotid tumor, but it was benign. Still it was removed and she was ok. I wasn't so lucky.
It started with a swollen lump I could feel on the right side of my neck. I didn't have a sore throat or anything, but my 6th sense told me it wasn't right. So I went to the doctor. They said it was nothing - just a swollen lymph. I was prescribed antibiotics. Still, the lump remained. I could feel it moving around, and it was very evident and prominent to me. I went to a 2nd doctor, and repeat - antibiotics. I called bullshit. I went to a doctor at a hospital - she sent me immediately to an ear/nose/throat specialist. I might add, she remains my family doctor to this day. love her! anyway.. the specialist performed an endoscopy - put that little snakey thing with the camera down my nose and into my throat. ouch! yup! As Arnold Schwarzenegger would say "IT'S A TUUUMOOOR". I was scheduled for immediate surgery about a week later. From what I remember it was a fairly quick procedure, a few hours in the O.R. I woke up groggy and with the entire right side of my neck all patched up in bandages. I felt like shit. Thank god for drugs. Later, I went to the restroom to wee and think the bandages had been removed in my drug induced slumber. Looked in the mirror.. not really thinking about it.. OMG! It was the worst thing I'd ever seen. My neck was stitched from ear lobe all along my neck to right under my chin. My mouth was lopsided like former Canadian PM, Jean Chretien. I had a pump coming out of a hole in my neck. I couldn't smile. I was so fucking scared and sad... it was unbelievable. Dunno how many stitches I had but must have been well over 100...
Anyway, I was released the next day and was assigned a home nurse. I had the little pump still in my neck to collect blood and fluids. I think the pump was removed about a week later. It hurt a bit when the nurse pulled that thing out of my body. It grossed me out as well to have to keep the wound and the little hole where the pump was clean... and to have to dump the blood as well.. yuck.
It was soon found out that my tumor was malignant - I was scheduled to begin radiation ASAP.
I was at the hospital all the time... I had several fittings. They created this mesh mask to fit over my face. It had precise markings on it so they would know where to line up these little lasers so they would know exactly where to aim the radiation beam. I got a little tattoo on my chest so that they could line the mask up to the tattoo. I still have it! And I'm proud of it! The best little tattoo ever... I wouldn't even ever trade it in for a back piece or sleeve..whatevs
Once that was all said and done, I went to the hospital every day at 11am for my 3 minute treatment. This was Monday thru Friday. I got weekends off. I was scheduled for 6 weeks of this. The first few weeks - no problem. It was around the 3rd/4th week my skin started to breakdown. Totally gnarly burns. It's gross but I could smell the searing flesh. It was so sore.. the worst pain I have ever felt. I have a pretty high pain threshold.. this just about broke me down. It was definitely a very trying moment in my life. I couldn't turn my head/neck... I couldn't sleep. i could barely live. All I could do was cry. I was given saline washes to try to soothe the burns.. nothing helped. My doctor told me to smoke pot and he would back me if I ever got in trouble with the law over it. I couldn't eat, I couldn't swallow. I was burning from the inside and the outside. My throat was raw. I had no saliva. I still couldn't smile - the nerves were temporarily damaged. Of course at that time, they didn't know if I would ever get my smile back. They say it can be permanent. I'd lost a ton of weight.. was down to 100lbs.
Into the 5th week I just couldn't do it anymore... the doctor stopped my radiation treatments. It was now time for me to rest and recover.
It was hard.. my will power really was put to the test. I went to therapy, and cancer support groups. It sounds cheezy.. but at a time like that, you need the support and take it in whatever form you can. I went thru this on my own.. my family wasn't there for me during this time. My boyfriend had dumped me when I was diagnosed with cancer.
I have Buddhist upbringings.. but I really started to take to Taoist philosophies. I was reading alot and looked to Taoism for strength and guidance. When I was well enough I stated to train Taoist Tai Chi. This definitely uplifted my spirits, strengthened my mind, body and soul. It was a great physical work out as well. It helped me focus and balance out the pain..
Anyway.. I'm now cancer free. I did develop 2 little lumps in the same area, after treatment. My oncologist tells me they are calcium build ups. They are still there but numerous MRI's and CT scans tell us they are nothing to be worried about. I've had repeat biopsies (ouch! I was awake while they cut into my neck!) and they all came back negative. Oh! I got my smile back :D A wee bit lopsided, but I can smile. The area where I had radiation is a darker shade and my oncologist told me the other day, that it will continue to deteriorate over time. It's just something I have to live with. I have a rad scar and a little round pock mark where the pump was. It looks like Bryan Adam's face. haha! Lotsa people think I'm some floozy with a bunch of hickies.. this is not the case tho.
My teeth have deteriorated in quality a bit (in my opinion), but my cancer dentist tells me I have some of the best teeth he's seen post radiation. I took part in a saliva study at the hospital and I have remarkable saliva volume! hooray! They could have done a better job sewing my ear back on. Seems they had to cut it at the lobe and lift it up to get in under there... I have a very chiseled jaw line now with a flappy ear lobe. I love the sinewy jaw line. I joke with my doctor all the time that I want him to do the left side! It is very gaunt.
I should also mention that with radiation, all of my hair on the right side (back of my head) fell out. It has not grown back to this day. That was a very frightening moment - i never even thought to anticipate hair loss. I though that only came with chemo. It was more evident for me because I'm a girl with long hair. Luckily the rest of it grows and covers over that bare patch.
I had to go for very frequent follow ups after treatment. Every two weeks, then every month.. whittling down. I now go once yearly to visit with my oncologist. I can live with that. It was just 2 weeks ago that I heard him say for the first time "You are Cancer-free". It was an emotional day for me... I'd never heard those words before.
I found that with the radiation, it really affected my memory - then and now. I talk with my doctor about it all the time, and they confirm it is highly possible. I think the radiation damaged my cognitive capacity. My short term memory these days isn't what it used to be. Ha! My long term memory isn't what it used to be! Some of my most vivid memories are from when I was a kid.. I still remember most of it. I hope I never forget. There is alot that I find I am struggling to remember. I find that thinking back to yesterday is really tough for me. It eats away at me.. my brain just feels a bit foggy all the time. KEEP A JOURNAL!!! Write EVERYTHING down! You will thank me for this tid bit!
I also developed alopecia last year. My doctor doesn't feel this is connected to my cancer.. but who knows. I also developed a non malignant skin transformation under my nail. Nail removed, skin biopsied... and negative.
I get more sick, more often. I have chronic pain and fatigue... ugh.. maybe it's just old age. Some days I still feel like I'm falling apart.. but I do manage to live a very normal.. "normal" life. :)
So anyway Adam - GOOD LUCK! It's a tough road, but definitely something that can be done and can be beat! I had it at a young age, knew nothing about it, what to do about it... I had no family around to hold my hand thru it. I wish I had the resources available to me then, that are available now. Fuck, I didn't even know how to use the internet back then!
The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.
To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.
The mind is the source of happiness and unhappiness.
Hang in there Adam!!!!
ADAM! Listen UP!
I had the same type of cancer about 9 years ago - I was 23 years old at the time. I had a tumor in my right sub-mandibular... I always feel very smart when I say that. lol!
I had never heard of parotid cancer until a few years previous to my own ordeal. My Mom was diagnosed with a parotid tumor, but it was benign. Still it was removed and she was ok. I wasn't so lucky.
It started with a swollen lump I could feel on the right side of my neck. I didn't have a sore throat or anything, but my 6th sense told me it wasn't right. So I went to the doctor. They said it was nothing - just a swollen lymph. I was prescribed antibiotics. Still, the lump remained. I could feel it moving around, and it was very evident and prominent to me. I went to a 2nd doctor, and repeat - antibiotics. I called bullshit. I went to a doctor at a hospital - she sent me immediately to an ear/nose/throat specialist. I might add, she remains my family doctor to this day. love her! anyway.. the specialist performed an endoscopy - put that little snakey thing with the camera down my nose and into my throat. ouch! yup! As Arnold Schwarzenegger would say "IT'S A TUUUMOOOR". I was scheduled for immediate surgery about a week later. From what I remember it was a fairly quick procedure, a few hours in the O.R. I woke up groggy and with the entire right side of my neck all patched up in bandages. I felt like shit. Thank god for drugs. Later, I went to the restroom to wee and think the bandages had been removed in my drug induced slumber. Looked in the mirror.. not really thinking about it.. OMG! It was the worst thing I'd ever seen. My neck was stitched from ear lobe all along my neck to right under my chin. My mouth was lopsided like former Canadian PM, Jean Chretien. I had a pump coming out of a hole in my neck. I couldn't smile. I was so fucking scared and sad... it was unbelievable. Dunno how many stitches I had but must have been well over 100...
Anyway, I was released the next day and was assigned a home nurse. I had the little pump still in my neck to collect blood and fluids. I think the pump was removed about a week later. It hurt a bit when the nurse pulled that thing out of my body. It grossed me out as well to have to keep the wound and the little hole where the pump was clean... and to have to dump the blood as well.. yuck.
It was soon found out that my tumor was malignant - I was scheduled to begin radiation ASAP.
I was at the hospital all the time... I had several fittings. They created this mesh mask to fit over my face. It had precise markings on it so they would know where to line up these little lasers so they would know exactly where to aim the radiation beam. I got a little tattoo on my chest so that they could line the mask up to the tattoo. I still have it! And I'm proud of it! The best little tattoo ever... I wouldn't even ever trade it in for a back piece or sleeve..whatevs
Once that was all said and done, I went to the hospital every day at 11am for my 3 minute treatment. This was Monday thru Friday. I got weekends off. I was scheduled for 6 weeks of this. The first few weeks - no problem. It was around the 3rd/4th week my skin started to breakdown. Totally gnarly burns. It's gross but I could smell the searing flesh. It was so sore.. the worst pain I have ever felt. I have a pretty high pain threshold.. this just about broke me down. It was definitely a very trying moment in my life. I couldn't turn my head/neck... I couldn't sleep. i could barely live. All I could do was cry. I was given saline washes to try to soothe the burns.. nothing helped. My doctor told me to smoke pot and he would back me if I ever got in trouble with the law over it. I couldn't eat, I couldn't swallow. I was burning from the inside and the outside. My throat was raw. I had no saliva. I still couldn't smile - the nerves were temporarily damaged. Of course at that time, they didn't know if I would ever get my smile back. They say it can be permanent. I'd lost a ton of weight.. was down to 100lbs.
Into the 5th week I just couldn't do it anymore... the doctor stopped my radiation treatments. It was now time for me to rest and recover.
It was hard.. my will power really was put to the test. I went to therapy, and cancer support groups. It sounds cheezy.. but at a time like that, you need the support and take it in whatever form you can. I went thru this on my own.. my family wasn't there for me during this time. My boyfriend had dumped me when I was diagnosed with cancer.
I have Buddhist upbringings.. but I really started to take to Taoist philosophies. I was reading alot and looked to Taoism for strength and guidance. When I was well enough I stated to train Taoist Tai Chi. This definitely uplifted my spirits, strengthened my mind, body and soul. It was a great physical work out as well. It helped me focus and balance out the pain..
Anyway.. I'm now cancer free. I did develop 2 little lumps in the same area, after treatment. My oncologist tells me they are calcium build ups. They are still there but numerous MRI's and CT scans tell us they are nothing to be worried about. I've had repeat biopsies (ouch! I was awake while they cut into my neck!) and they all came back negative. Oh! I got my smile back :D A wee bit lopsided, but I can smile. The area where I had radiation is a darker shade and my oncologist told me the other day, that it will continue to deteriorate over time. It's just something I have to live with. I have a rad scar and a little round pock mark where the pump was. It looks like Bryan Adam's face. haha! Lotsa people think I'm some floozy with a bunch of hickies.. this is not the case tho.
My teeth have deteriorated in quality a bit (in my opinion), but my cancer dentist tells me I have some of the best teeth he's seen post radiation. I took part in a saliva study at the hospital and I have remarkable saliva volume! hooray! They could have done a better job sewing my ear back on. Seems they had to cut it at the lobe and lift it up to get in under there... I have a very chiseled jaw line now with a flappy ear lobe. I love the sinewy jaw line. I joke with my doctor all the time that I want him to do the left side! It is very gaunt.
I should also mention that with radiation, all of my hair on the right side (back of my head) fell out. It has not grown back to this day. That was a very frightening moment - i never even thought to anticipate hair loss. I though that only came with chemo. It was more evident for me because I'm a girl with long hair. Luckily the rest of it grows and covers over that bare patch.
I had to go for very frequent follow ups after treatment. Every two weeks, then every month.. whittling down. I now go once yearly to visit with my oncologist. I can live with that. It was just 2 weeks ago that I heard him say for the first time "You are Cancer-free". It was an emotional day for me... I'd never heard those words before.
I found that with the radiation, it really affected my memory - then and now. I talk with my doctor about it all the time, and they confirm it is highly possible. I think the radiation damaged my cognitive capacity. My short term memory these days isn't what it used to be. Ha! My long term memory isn't what it used to be! Some of my most vivid memories are from when I was a kid.. I still remember most of it. I hope I never forget. There is alot that I find I am struggling to remember. I find that thinking back to yesterday is really tough for me. It eats away at me.. my brain just feels a bit foggy all the time. KEEP A JOURNAL!!! Write EVERYTHING down! You will thank me for this tid bit!
I also developed alopecia last year. My doctor doesn't feel this is connected to my cancer.. but who knows. I also developed a non malignant skin transformation under my nail. Nail removed, skin biopsied... and negative.
I get more sick, more often. I have chronic pain and fatigue... ugh.. maybe it's just old age. Some days I still feel like I'm falling apart.. but I do manage to live a very normal.. "normal" life. :)
So anyway Adam - GOOD LUCK! It's a tough road, but definitely something that can be done and can be beat! I had it at a young age, knew nothing about it, what to do about it... I had no family around to hold my hand thru it. I wish I had the resources available to me then, that are available now. Fuck, I didn't even know how to use the internet back then!
The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.
To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.
The mind is the source of happiness and unhappiness.
Hang in there Adam!!!!