PET Scan on 2/1/12
Anyway, I am glad to have found CSN. BTW, I am a 55 year old male, married 29 years with two grown (almost) daughters. I was born and bred a Sooner (Okie) but have lived in Texas since college (1979).
Comments
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Don't wait unother minute to figure this out
or else you'll also have to figure out why you had the problem to begin with. If you do this, you're just cheating yourself out of life's enjoyment. One day at a time, that is the motto. This also means "enjoy life, one day at at time." It is hard to not get focused on the scans, but the scans then become a metaphore for our lives. Carpe diem, my friend.
Wishing you the best,
Pat0 -
I guess I don'tlongtermsurvivor said:Don't wait unother minute to figure this out
or else you'll also have to figure out why you had the problem to begin with. If you do this, you're just cheating yourself out of life's enjoyment. One day at a time, that is the motto. This also means "enjoy life, one day at at time." It is hard to not get focused on the scans, but the scans then become a metaphore for our lives. Carpe diem, my friend.
Wishing you the best,
Pat
really know quite HOW to figure it out. How does one do it? Have I not accepted it yet? I'm supposed to be the strong one in my family but this has left me feeling inadequate and vulnerable. Most of the posters here seem to pretty much have everything under control and in perspective. Is it that I'm still just a newbie in the world of cancer?0 -
Everyone processes it in their own way.
Hi, Sooner
Welcome to the boards. Ask whatever questions you need, and someone with relevant experience will answer. I am a 55-year old female, married just about as long as you, with two college-age daughters. I had HPV-positive SCC base of tongue - stage 4 with mets to lymph nodes on both sides of my neck, so treatment got a little intense for me. I'm left with no spit, no snot, no tears, no butt, and still trying to ramp back up at work.
I understand that 'survivor's guilt' can be a problem for a lot of folks. It's not a problem that I had. I feel very much like I dodged a bullet, and I'm very grateful. I am trying to adapt to the 'new normal' that they say comes after treatment, but as another has so eloquently stated here 'I wish that new normal would quit changing on me.'
I got a clean scan at 18 months, so I am optimistic that I am in that 95% percent that my Stanford doc said will never experience a recurrence. For that, I will be forever grateful. However, my 'survivor's honeymoon' is pretty much over. Every morning I have to get up and face all the ongoing side effects as I try to function at the office. I shoulder my little backpack with the water bottles, eye drops, biotene gum, biotene mouth rinse, biotene mouth gel, biotene mouth spray, dental floss and fluoride toothpaste. I struggle to do public presentations without my mouth getting so dry I can't talk. I sip lattes and herbal teas all day long to sooth my almost continuous scratchy throat. I mostly bring soup from home to eat at lunch, and I typically can't get through it in the time alloted for my lunch break. However, over time, I've learned to do a pretty good imitation of being completely normal. Most folks don't notice anything out of the ordinary about me, and I don't get many comments anymore (outside of the usual snarky remarks other women make about my size-2 pants). As I said above, I am grateful and very very happy to be here. But, like you and most of the other people here on these forums, I am filled with ambivalent feelings. It comes with the territory. Hang in there. You will get through this. I'm holding good thoughts for you to have a clean scan.
Deb0 -
Welcome...Sooner79 said:I guess I don't
really know quite HOW to figure it out. How does one do it? Have I not accepted it yet? I'm supposed to be the strong one in my family but this has left me feeling inadequate and vulnerable. Most of the posters here seem to pretty much have everything under control and in perspective. Is it that I'm still just a newbie in the world of cancer?
You'll figure it out...
In the meantime, just stay positive and keep plugging away one day at a time... We all have anxity when it's time for scans...
Actually the word used here is "Scanxiety"....
Here is a thread with tons of information, a contribution from all of us for you;
SUPERTHREAD
I'm sure you'll be telling us soon of the good news on your scan.
Best,
John0 -
How to process?D Lewis said:Everyone processes it in their own way.
Hi, Sooner
Welcome to the boards. Ask whatever questions you need, and someone with relevant experience will answer. I am a 55-year old female, married just about as long as you, with two college-age daughters. I had HPV-positive SCC base of tongue - stage 4 with mets to lymph nodes on both sides of my neck, so treatment got a little intense for me. I'm left with no spit, no snot, no tears, no butt, and still trying to ramp back up at work.
I understand that 'survivor's guilt' can be a problem for a lot of folks. It's not a problem that I had. I feel very much like I dodged a bullet, and I'm very grateful. I am trying to adapt to the 'new normal' that they say comes after treatment, but as another has so eloquently stated here 'I wish that new normal would quit changing on me.'
I got a clean scan at 18 months, so I am optimistic that I am in that 95% percent that my Stanford doc said will never experience a recurrence. For that, I will be forever grateful. However, my 'survivor's honeymoon' is pretty much over. Every morning I have to get up and face all the ongoing side effects as I try to function at the office. I shoulder my little backpack with the water bottles, eye drops, biotene gum, biotene mouth rinse, biotene mouth gel, biotene mouth spray, dental floss and fluoride toothpaste. I struggle to do public presentations without my mouth getting so dry I can't talk. I sip lattes and herbal teas all day long to sooth my almost continuous scratchy throat. I mostly bring soup from home to eat at lunch, and I typically can't get through it in the time alloted for my lunch break. However, over time, I've learned to do a pretty good imitation of being completely normal. Most folks don't notice anything out of the ordinary about me, and I don't get many comments anymore (outside of the usual snarky remarks other women make about my size-2 pants). As I said above, I am grateful and very very happy to be here. But, like you and most of the other people here on these forums, I am filled with ambivalent feelings. It comes with the territory. Hang in there. You will get through this. I'm holding good thoughts for you to have a clean scan.
Deb
Deb, thanks so much for your reply. I can already tell that it's going to help me just corresponding with others that have shared the same experiences. The things that bother me with my work are the deep and raspy voice I have in the mornings, and the glob of lymphedema (waddle) that I have under my chin most of the time. The combination of the two make me reluctant to get out of the office which is a necessary part of my job. I guess in my mind I am still incapacitated. Just so much to process and figure out. Hopefully it will get better in time but the past 10 months seem more like 10 years.0 -
Turtleneck shirtsSooner79 said:How to process?
Deb, thanks so much for your reply. I can already tell that it's going to help me just corresponding with others that have shared the same experiences. The things that bother me with my work are the deep and raspy voice I have in the mornings, and the glob of lymphedema (waddle) that I have under my chin most of the time. The combination of the two make me reluctant to get out of the office which is a necessary part of my job. I guess in my mind I am still incapacitated. Just so much to process and figure out. Hopefully it will get better in time but the past 10 months seem more like 10 years.
I wore nothing but turtlenecks for the first winter right after treatments. I've branched out a bit, this second winter I've actually expanded into a few button down shirts. I usually keep them buttoned most of the way up. My skin is still discolored from the radiation - I've got the square on my chest, extending upwards over my chin and partly over my cheekbones. These seem obvious to me, but I honestly think most people don't notice this stuff. My voice is pretty raspy, but most of the public I deal with don't know what my voice sounded like before. I do have problems with thick mucus, and sometimes I make pretty nasty noises trying to clear out my throat. At work sometimes I worry that folks will think I am contagious. My kid, on the other hand, will get up and come down the hall to make sure I'm not choking on my own snot, when I do this at home.
Just three weeks after I finished treatment, when I was still completely dependent on the PEG and using a pump for feeding, my husband put me in the camper and drove me up over the Sierras and over to Bishop for the Bishop Mule Days celebration. I thought he was crazy, and he promised me that if it was too much, he'd bring me right back home again. But it turned out to be a really good idea. I suddenly realized I wasn't incapacitated any more, I didn't have any more chemo nausea, and that I didn't need the damn pump to use my PEG. About a day later, I figured out that it was a whole lot easier to drink Boost, and to pour the stuff down my throat rather than into the syringe. Our fellow campers kept offering me solid food, and I'd put tiny bits into my mouth. I figured out I could actually swallow bits of the really soft stuff. These were all really tiny steps, but they really helped change my perspective, from being an incapacitated sickie, to being someone with just a few issues to overcome.
Not sure what my point is here, except that it's a really individual journey, and that help usually comes from the most unexpected places. So hang in there. It's early yet.
Deb0 -
Okie
Welcome and positive thoughts your way on Wednesday. Quick question: what is 'FPL at work' you mention in your initial post?
The way I look at it, there is no reason what-so-ever to feel guilty. I am 18 months post treatment and still alive. I'm lucky. You're still here, you're lucky also. We're all lucky. It has nothing to do with cheating death, it just is. Don't beat yourself up over this. Enjoy life. Enjoy your family. Enjoy your friends. Enjoy!!! Cheers.
Jimbo0 -
Turkey Neck Club Member...Sooner79 said:How to process?
Deb, thanks so much for your reply. I can already tell that it's going to help me just corresponding with others that have shared the same experiences. The things that bother me with my work are the deep and raspy voice I have in the mornings, and the glob of lymphedema (waddle) that I have under my chin most of the time. The combination of the two make me reluctant to get out of the office which is a necessary part of my job. I guess in my mind I am still incapacitated. Just so much to process and figure out. Hopefully it will get better in time but the past 10 months seem more like 10 years.
Another welcome to you...Turkey Neck Club.....
Most of us have been there...a lot of that waddle will go away eventually. Most is due to the lymph glands not draining like they have in the past. Eventually they'll find new paths and the swelling will reduce.
If you are like most of us, you'll also see some symptoms of L'Hermette's...that shocking sensation you get when you bend your head forward touching your chest.... It usually travels down your arms and even your legs....again, that too will go away for the most part if you have it...
Best,
John0 -
I was not gracefuljtl said:I am also going in for a PET
I am also going in for a PET on Wednesday, my first post rad. This is my third cancer, melanoma, prostate and now this and I sure don't feel quilty. Wishing you great results!
John
at all. I am just two years younger than you at about the same stage in life with marriage, children, and career. I'm coming up on three years post treatment. I needed professional help from two psychologists and some anti-anxiety meds along the way and I'm the big strong traditional man. It's complicated for some and plain as day for others. It has been mysterious and eluded me getting my mind around the whole life-mortality issue. Much has to do with individual faith. Unfortunately I have none of that. I also think that your immediate scan results can impact you deeply if you don't get that "NED" right away. The physical aspects will improve and you will get to a point where you can manage the side effects well enough to function day to day. The bigger problem for me was the mental issue. Consider that you have gone through an assault on your life. Much as a soldier is assaulted and his life threatened and his comrades killed, you are very much in the same mind set. You will come to this site and see people die and thus the guilt. So I urge you to explore and read up on, "Post Traumatic Stress Disorder", because it clearly exists in many post treatment patients. I would also urge you to consider that depression is to some degrees a coping mechanism to make you think about your current situation and find solutions out of the depression. Unravel one mystery at a time and keep looking for answers but don't stop living in today.0 -
Great Adviceratface said:I was not graceful
at all. I am just two years younger than you at about the same stage in life with marriage, children, and career. I'm coming up on three years post treatment. I needed professional help from two psychologists and some anti-anxiety meds along the way and I'm the big strong traditional man. It's complicated for some and plain as day for others. It has been mysterious and eluded me getting my mind around the whole life-mortality issue. Much has to do with individual faith. Unfortunately I have none of that. I also think that your immediate scan results can impact you deeply if you don't get that "NED" right away. The physical aspects will improve and you will get to a point where you can manage the side effects well enough to function day to day. The bigger problem for me was the mental issue. Consider that you have gone through an assault on your life. Much as a soldier is assaulted and his life threatened and his comrades killed, you are very much in the same mind set. You will come to this site and see people die and thus the guilt. So I urge you to explore and read up on, "Post Traumatic Stress Disorder", because it clearly exists in many post treatment patients. I would also urge you to consider that depression is to some degrees a coping mechanism to make you think about your current situation and find solutions out of the depression. Unravel one mystery at a time and keep looking for answers but don't stop living in today.
Jimbo - FPL = Full Performance Level. I think it may be an old military or government employee term. Not sure where I picked it up.
To everyone else - your advice is like a breath of fresh air. I can honestly say I don't feel as alone as I did a few days ago. Please keep sharing your stories and advice with me.
Ratface - my Docs have suggested counseling, which I am not against, but honestly I am just tired of going to doctors appointments (and also tired of spending my $40 co-pay every time I visit one). I am taking Prozac and have for several years and also the occasional Xanax when I get extremely anxious or fearful. I don't think the Prozac helps, but I guess I'm afraid to try somenthing else for fear I'll get worse. My oncologist also suggested that I was experiencing PTSD. I will definitely check in to that. I am now anxious to get the results from my scan on Wednesday and if NED, hopefully I can start to work on convincing myself that i am in fact a "survivor".
Again, thanks to everyone. I feel like I have a whole new set of friends! Too bad there isn't a convention for us to attend so we could share our experiences in person. Please keep the dialogue coming.
Sooner0 -
Two Psychologist?Sooner79 said:Great Advice
Jimbo - FPL = Full Performance Level. I think it may be an old military or government employee term. Not sure where I picked it up.
To everyone else - your advice is like a breath of fresh air. I can honestly say I don't feel as alone as I did a few days ago. Please keep sharing your stories and advice with me.
Ratface - my Docs have suggested counseling, which I am not against, but honestly I am just tired of going to doctors appointments (and also tired of spending my $40 co-pay every time I visit one). I am taking Prozac and have for several years and also the occasional Xanax when I get extremely anxious or fearful. I don't think the Prozac helps, but I guess I'm afraid to try somenthing else for fear I'll get worse. My oncologist also suggested that I was experiencing PTSD. I will definitely check in to that. I am now anxious to get the results from my scan on Wednesday and if NED, hopefully I can start to work on convincing myself that i am in fact a "survivor".
Again, thanks to everyone. I feel like I have a whole new set of friends! Too bad there isn't a convention for us to attend so we could share our experiences in person. Please keep the dialogue coming.
Sooner
My profession maintained several staff psychologists and thats where I started. The experience certainly wasn't negative and I was helped by the experience, but-----I just wasn't right still-----so I found a psychologist that specialized in cancer patients, what a difference, we were instantly in tune and I was able to get better. I also attended several years of group sessions sponsored by SPOHNC, Support with people with head and neck cancer, they have local chapters. I, personally have a very difficult time being out of control and found myself mistakenly powerless over the disease. Don't be afraid of any form of help. I have found exercise to be a great coping mechanism with many post treatment benefits, especially yoga, although the tight pants can look great. Keep laughing, Rick.0 -
Waiting for results...ratface said:Two Psychologist?
My profession maintained several staff psychologists and thats where I started. The experience certainly wasn't negative and I was helped by the experience, but-----I just wasn't right still-----so I found a psychologist that specialized in cancer patients, what a difference, we were instantly in tune and I was able to get better. I also attended several years of group sessions sponsored by SPOHNC, Support with people with head and neck cancer, they have local chapters. I, personally have a very difficult time being out of control and found myself mistakenly powerless over the disease. Don't be afraid of any form of help. I have found exercise to be a great coping mechanism with many post treatment benefits, especially yoga, although the tight pants can look great. Keep laughing, Rick.
I had my PET scan this morning. The nurses, techs, etc. were all friendly and upbeat when I got the IV and the dye - talked about the last time I was there, etc. Then they took me to the machine and did the scan. When they were done, they decided they needed to do another one of my head and neck with my arms by my side instead of over my head. Did they see something they didn't like?? Then when I got off the table, they were all poker faced and stoic. They told me the results would be in my doc's hands this afternoon and asked when my Drs appointment was. (Not until Monday). I was feeling pretty positive about everything up until that point. I know they can't and wouldn't tell me anything, but if body language means anything, something wasn't normal. Can the rad techs tell if something is glaringly wrong? So I called the doc's off to tell them the results would be ready today and ask if they could get me in tomorrow or Friday - answer: sorry, he's in surgery both days and all booked up until your appointment on Monday. They did say that either the doc or his nurse would call me as soon as they got the results. Should I be worried or am I making a mountain out of a mole hill?0 -
Seems to meSooner79 said:Waiting for results...
I had my PET scan this morning. The nurses, techs, etc. were all friendly and upbeat when I got the IV and the dye - talked about the last time I was there, etc. Then they took me to the machine and did the scan. When they were done, they decided they needed to do another one of my head and neck with my arms by my side instead of over my head. Did they see something they didn't like?? Then when I got off the table, they were all poker faced and stoic. They told me the results would be in my doc's hands this afternoon and asked when my Drs appointment was. (Not until Monday). I was feeling pretty positive about everything up until that point. I know they can't and wouldn't tell me anything, but if body language means anything, something wasn't normal. Can the rad techs tell if something is glaringly wrong? So I called the doc's off to tell them the results would be ready today and ask if they could get me in tomorrow or Friday - answer: sorry, he's in surgery both days and all booked up until your appointment on Monday. They did say that either the doc or his nurse would call me as soon as they got the results. Should I be worried or am I making a mountain out of a mole hill?
you're reading a lot into your interpretation of chance facial expression. That's not something I'm very good at, so unless you're way better than I am, I'd not make to much out of this. The repositioning thing is generally done because they don't have optimal pictures, and want to improve the quality. It doesn't signify something ominous.
The doctor's office wants to have a comprehensive conversation with you, which is why there was teh appointment scheduled on Monday. Their experience is that if this gets started on the phone, it cannot be finished on the phone, which will leave you unsatisfied and put them in a position of having to repeat this conversation on several occasions.
I really can't say one way or the other how this is going to go for you, but there is nothing that out of the ordinary in what you just witnessed. I would suggest you distract yourself for now. Go to a movie, play with the dog, do anything to force your mind off of this situation. You have a long way to go, and it is best accomplished one step at a time.
Wishing you the best.
Pat0 -
Good news!longtermsurvivor said:Seems to me
you're reading a lot into your interpretation of chance facial expression. That's not something I'm very good at, so unless you're way better than I am, I'd not make to much out of this. The repositioning thing is generally done because they don't have optimal pictures, and want to improve the quality. It doesn't signify something ominous.
The doctor's office wants to have a comprehensive conversation with you, which is why there was teh appointment scheduled on Monday. Their experience is that if this gets started on the phone, it cannot be finished on the phone, which will leave you unsatisfied and put them in a position of having to repeat this conversation on several occasions.
I really can't say one way or the other how this is going to go for you, but there is nothing that out of the ordinary in what you just witnessed. I would suggest you distract yourself for now. Go to a movie, play with the dog, do anything to force your mind off of this situation. You have a long way to go, and it is best accomplished one step at a time.
Wishing you the best.
Pat
I just got a call from my Doc's nurse who advised that my PET came back clear and as of right now I am NED but I need to keep my appointment on Monday. Again, God has blessed me. I can't say enough about the power of prayer and the hope and encouragement of others in my family and on this site. Don't ever stop fighting or give up hope!0 -
ExcellentSooner79 said:Good news!
I just got a call from my Doc's nurse who advised that my PET came back clear and as of right now I am NED but I need to keep my appointment on Monday. Again, God has blessed me. I can't say enough about the power of prayer and the hope and encouragement of others in my family and on this site. Don't ever stop fighting or give up hope!
Okie, Great news, I'm sure you're stoked about it. Enjoy the moment, treat yourself and your family. Cheers.
Jimbo0 -
YAY!! Congrats!!Sooner79 said:Good news!
I just got a call from my Doc's nurse who advised that my PET came back clear and as of right now I am NED but I need to keep my appointment on Monday. Again, God has blessed me. I can't say enough about the power of prayer and the hope and encouragement of others in my family and on this site. Don't ever stop fighting or give up hope!
YAY!! Congrats!!0 -
Great news!Sooner79 said:Good news!
I just got a call from my Doc's nurse who advised that my PET came back clear and as of right now I am NED but I need to keep my appointment on Monday. Again, God has blessed me. I can't say enough about the power of prayer and the hope and encouragement of others in my family and on this site. Don't ever stop fighting or give up hope!
Doing the happy dance for you now! Celebrate!
Deb0
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