I was just diagnosed with SCC on my tongue. I am scared.
Comments
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Been There . . .
Different cancer, though - mine was Base of Tongue, Stage four. I did have cancer in two of my lymph nodes. Glad you've had your PET, and know it's not anywhere else. I know that once I knew I had cancer and it had gone into my lymph nodes, every pain, ache, twinge or "odd" feeling made me wonder if the cancer hadn't spread (it had not, thank goodness).
This is a very scary time. I must say, I felt a little better once I had a game plan to fight the cancer, and felt better when treatment started. We have had lots of people here who are tongue cancer survivors - even high stage long term survivors who have had no recurrences. Do you have a full plan yet? Any questions you may have (or support you may need - sometimes it's not about info, it's just about the need for someone to say "I'm still here for you"), be sure to post.
Keep us updated. Do well.0 -
NitaNita...
Welcome to the forum, great people here, many have walked the road you are just starting.
It is very scary, no matter your age, especially with no history in your family.
But you have a lot going for you, age being one, and STGI being another.
I'm not sure if they'll do an HPV check on the biopsy as that is the one big factor these days on SCC H&N Cancer (SCCHN)... Especially as you aren't smoker or drinker.
HPV does respond well to treatment also, so that potentially could be another factor in your favor.
Technology, medical education and studies make this a very treatable cancer these days. Nothing like the days of past that I had envisioned when starting my journey a few years ago.
In January 2009, I was Dx with STGIII SCC Tonsils and a secondary lymphnode on the same side. Sixteen weeks, four types of chemo and 35 days of radiation, I finished Tx.
All scans have been clean and clear since.
Here is an excellent source of info for a newbie such as yourself. It's called the SuperThread... A compilation of many links, posts and tons of information gathered by the many survivors here and put to a thread. It's maintained and updated by Dawn (Sweetblood22), a good friend and fellow survivor;
SuperThread
Best of luck to you on your future travels down this road, and glad that you have found your way here, though the circumstances are unfortunate.
Thoughts & Prayers,
John0 -
NitaNitaSkiffin16 said:NitaNita...
Welcome to the forum, great people here, many have walked the road you are just starting.
It is very scary, no matter your age, especially with no history in your family.
But you have a lot going for you, age being one, and STGI being another.
I'm not sure if they'll do an HPV check on the biopsy as that is the one big factor these days on SCC H&N Cancer (SCCHN)... Especially as you aren't smoker or drinker.
HPV does respond well to treatment also, so that potentially could be another factor in your favor.
Technology, medical education and studies make this a very treatable cancer these days. Nothing like the days of past that I had envisioned when starting my journey a few years ago.
In January 2009, I was Dx with STGIII SCC Tonsils and a secondary lymphnode on the same side. Sixteen weeks, four types of chemo and 35 days of radiation, I finished Tx.
All scans have been clean and clear since.
Here is an excellent source of info for a newbie such as yourself. It's called the SuperThread... A compilation of many links, posts and tons of information gathered by the many survivors here and put to a thread. It's maintained and updated by Dawn (Sweetblood22), a good friend and fellow survivor;
SuperThread
Best of luck to you on your future travels down this road, and glad that you have found your way here, though the circumstances are unfortunate.
Thoughts & Prayers,
John
hey my name is Matt i'm 29 and i was diagnosed with scc stage 4 level a so i know how you feel how can we be this young and have this cancer non drinker and non smoker i'm not a doctor but i'm willing to bet that you are hpv positive i'am its not a bad thing it makes the cure rate between 80 and 90% so its very good hpv is caused by oral sex its the same thing women get and have cervical cancer i have done a ton of research on this cancer i'm also going to MD Anderson in Orlando fl as they are the best in this area i'm not sure where your located but i know that the surgery is a last option especially if your stage one they have caught this early for you which is great it doesn't really change the treatment option too much but really do some research on this you can give me a call if you would like i would love to talk to you and let you know what i have learned and it would be nice to talk to someone around my age don't worry we will get through this together iam a newly wed and have been with my wife for 6 years and we have a 6 month old son named Christian just bought a new house everything was going great and then bam this came along so i know what your going through call me anytime 352-636-9929 would love to talk to you and give you some advice.Matt0 -
Of course you're scared.......
this is scary business. However, you've come to the best place on the net for guidence and help...fear will be replaced with resolve...it's part of the process. I thought for sure, that between the months of being misdianosed, and then all the time it took for treatment to get going, that the monster was having a hay day in my body....but I was wrong.
You will begin to feel very differently once treatment commences....I promise you.
You just keep asking questions....tell us when you're having a fearful moment, and we'll be here to put your fears at rest.
You and Matt on starting a new bus (seems there's a new one taking off every few weeks)...there are some of us only a few weeks ahead of you, on a different bus but all headed in the same direction....cure and survival!!
p0 -
Scaredphrannie51 said:Of course you're scared.......
this is scary business. However, you've come to the best place on the net for guidence and help...fear will be replaced with resolve...it's part of the process. I thought for sure, that between the months of being misdianosed, and then all the time it took for treatment to get going, that the monster was having a hay day in my body....but I was wrong.
You will begin to feel very differently once treatment commences....I promise you.
You just keep asking questions....tell us when you're having a fearful moment, and we'll be here to put your fears at rest.
You and Matt on starting a new bus (seems there's a new one taking off every few weeks)...there are some of us only a few weeks ahead of you, on a different bus but all headed in the same direction....cure and survival!!
p
We're all scared at first but then reality sets in and you go into fight mode once treatment starts.
I was 39 when diagnosed and now two years out I am clean and doing great.
When I was diagnosed I was very scared and thought I had been given a death sentence. I remember doing some internet "research" and coming across scary information and pictures but once I found this place and read so many encouraging stories I started to feel better.
Of course I must mention that my faith in God was a big factor for me and just reading through Psalms was very good for my nerves.
Once you got yourself a good team, just stay positive in the plan and be prepared to battle and you will make it through and all will BE WELL.
I'm praying and believing for your full recovery.
Joel0 -
Hi NitaNita! I also joinedJoel4 said:Scared
We're all scared at first but then reality sets in and you go into fight mode once treatment starts.
I was 39 when diagnosed and now two years out I am clean and doing great.
When I was diagnosed I was very scared and thought I had been given a death sentence. I remember doing some internet "research" and coming across scary information and pictures but once I found this place and read so many encouraging stories I started to feel better.
Of course I must mention that my faith in God was a big factor for me and just reading through Psalms was very good for my nerves.
Once you got yourself a good team, just stay positive in the plan and be prepared to battle and you will make it through and all will BE WELL.
I'm praying and believing for your full recovery.
Joel
Hi NitaNita! I also joined this group not too long ago. Let me tell you have the most wonderful group of people that will help you thru this.
My ct scan was also normal but they still decided to go wiht neck diesction as per biopsy the thickness of tumor was higher indicating it was there for a while i.e. Cancer have chance to spread. They took out 27 lymph nodes and all were clear but one with a tiny dot .01 cm. I am going thru radiaiton just for that.
Sam0 -
HPV Cause....Matt29 said:NitaNita
hey my name is Matt i'm 29 and i was diagnosed with scc stage 4 level a so i know how you feel how can we be this young and have this cancer non drinker and non smoker i'm not a doctor but i'm willing to bet that you are hpv positive i'am its not a bad thing it makes the cure rate between 80 and 90% so its very good hpv is caused by oral sex its the same thing women get and have cervical cancer i have done a ton of research on this cancer i'm also going to MD Anderson in Orlando fl as they are the best in this area i'm not sure where your located but i know that the surgery is a last option especially if your stage one they have caught this early for you which is great it doesn't really change the treatment option too much but really do some research on this you can give me a call if you would like i would love to talk to you and let you know what i have learned and it would be nice to talk to someone around my age don't worry we will get through this together iam a newly wed and have been with my wife for 6 years and we have a 6 month old son named Christian just bought a new house everything was going great and then bam this came along so i know what your going through call me anytime 352-636-9929 would love to talk to you and give you some advice.Matt
Hi Matt, just throwing this out there, but I don't believe that they have positiviely and definitively determined HPV derived SCCHN cancer is 100% caused by oral sex.
JG0 -
NitaNita ....Sam999 said:Hi NitaNita! I also joined
Hi NitaNita! I also joined this group not too long ago. Let me tell you have the most wonderful group of people that will help you thru this.
My ct scan was also normal but they still decided to go wiht neck diesction as per biopsy the thickness of tumor was higher indicating it was there for a while i.e. Cancer have chance to spread. They took out 27 lymph nodes and all were clear but one with a tiny dot .01 cm. I am going thru radiaiton just for that.
Sam
Sorry you have to join our group.....but let me point out the positives for a moment ...and I mean really positive ...
1. You don't smoke or drink and you are young ...so your body is prmied for fighting this with the help of the treatments.
2. You are stage 1. What many of us would give to have been caught at that stage...I'm glad for you on that.
3. (IF) you don't smoke or drink...it MAY (not for sure) be HPV (virus) related ...if so (and I would ask the doc to test for that) then HPV responds well to treatment. But if not HPV remember you are very early stage.
Check out the SUPERTHREAD John put on his post ..great stuff....
Also...please go to www.oralcancerfoundation.org and read up on Head and Neck Cancers and the different types (find yours) ...don't bother to "google" anything ...much of the info is outdated and flat out wrong ....
Stay with the group here and do your own homework as well. Ask questions of your doctor (keep a pad..it will come in handy) and write down the answers.
I was base of tongue stage III with one lymph node invovled and HPV + I finished treatments on January 20th and got my first PET / CT scan May 7th and got a good report from the doctors ....
So you can handle this and beat this and you have soooo much going for you.
If okay by you, I will add you to my nightly prayer list ....
Keep us posted! I assume (and hope you ask)that you will get a PET scan
Tim0 -
Hi NitaNita,
I'm 31, oral
Hi NitaNita,
I'm 31, oral tongue SCC stage I and, like you, I didn't drink or smoke. **** happens.
Just by finding this forum you've done the best thing you could do so far!
Then, listen to your body but don't freak out unless a doctor tells you that you should.. During those first few days after being diagnosed (in February 2012) I remember finding countless bumps under my skin.. and none of them was anything to worry about.
You'll probably start off with the same treatment as mine, i.e. removal of the tumor from the tongue and partial neck dissection. One thing you might need to discuss with your surgeon is about reconstructing the tongue. I opted for no reconstruction: the tongue was simply stitched up and I'm very happy with the result. If you need more info on this feel free to ask.
One of my biggest fears before surgery was not to be able to talk. I can tell you that few days after surgery I could be understood, and after about a month I could talk normally.
It's likely that surgery will take care of everything and that, believe it or not, is a sweet sweet deal.
A big hug.
Dre.0 -
Wowooo said:Hi NitaNita,
I'm 31, oral
Hi NitaNita,
I'm 31, oral tongue SCC stage I and, like you, I didn't drink or smoke. **** happens.
Just by finding this forum you've done the best thing you could do so far!
Then, listen to your body but don't freak out unless a doctor tells you that you should.. During those first few days after being diagnosed (in February 2012) I remember finding countless bumps under my skin.. and none of them was anything to worry about.
You'll probably start off with the same treatment as mine, i.e. removal of the tumor from the tongue and partial neck dissection. One thing you might need to discuss with your surgeon is about reconstructing the tongue. I opted for no reconstruction: the tongue was simply stitched up and I'm very happy with the result. If you need more info on this feel free to ask.
One of my biggest fears before surgery was not to be able to talk. I can tell you that few days after surgery I could be understood, and after about a month I could talk normally.
It's likely that surgery will take care of everything and that, believe it or not, is a sweet sweet deal.
A big hug.
Dre.
As bad as it is to say this I am glad I am not alone. I am having the same surgery as you and they said about 15 to 20 lymphnodes taken out. They don't want to do any radiation or chemo unless the nodes are positive for it. I had a PET scan done and it said that it wasn't anywhere else but it hasn't stopped me from worrying everyday that it could be spreading while I sit and wait for the surgery.
How painful was the surgery? The thought of loosing part of my tongue freaks me out! Dr said he isn't even going to stitch it just caurterise (sp) it and let it heal on it's own.0 -
also..NitaNita said:Wow
As bad as it is to say this I am glad I am not alone. I am having the same surgery as you and they said about 15 to 20 lymphnodes taken out. They don't want to do any radiation or chemo unless the nodes are positive for it. I had a PET scan done and it said that it wasn't anywhere else but it hasn't stopped me from worrying everyday that it could be spreading while I sit and wait for the surgery.
How painful was the surgery? The thought of loosing part of my tongue freaks me out! Dr said he isn't even going to stitch it just caurterise (sp) it and let it heal on it's own.
I went and saw an oncologist just to make sure what the ENT wanted to do made since. He wanted to do a check and see if I was HPV positive and so I am still waiting for the results.0 -
All of you..NitaNita said:also..
I went and saw an oncologist just to make sure what the ENT wanted to do made since. He wanted to do a check and see if I was HPV positive and so I am still waiting for the results.
Sorry I have no idea how to use this thing and if I just reply off myself or each of you. I thank all of you for posting back to me. I literally was in tears. I have no one to talk to but my husband, family and friends but none of them know how I feel. I found out May 14th and was a mess. I have cried everyday since then. I a nervous wreck about the surgery and the thought it could be in the nodes and then will have to do radiation and chemo. They said if its just in the tongue and nodes come out clear I will just have to have the surgery. I am still waiting for them to book the date for surgery so while I sit and wait I keep thinking it's getting worse. I am so glad I have found this site. I have looked on the internet and have been nothing but horrified. My husband has banned me from internet looking..haha! It is good to see the positivity from all of you! Please keep me in your thoughts and prayers!0 -
Hey Nita, of course you are
Hey Nita, of course you are scared, who wouldn't be, however, you are very fortunate that the cancer has been diagnosed at an early stage. It also sounds like although you will lose some of your tongue, it will be a relatively minamal amount. The clear PET also sounds promising, and I hope that the partial neck disection results will be negative as well. Certainly the treatment will not be a walk in the park, but based on what you have said, it sounds like you have a pretty good prognosis. You will have some adjusting to do, and new normals to establish, but you will have your life, and that is the most important thing. By the way, I was not a smoker, or heavy drinker, and I had/have one of the healthiest lifestyles (healthy diet, lots of exercise, etc) one could/can have, and I also got nailed. Cancer is an equal opportunity disease. Just remember a couple of things: first You Can Do This (repeat that to yourself a lot when things get tough), and second, again when things get tough, to HIT, and HIT hard, that is, Hang In There. We are all with you on your journey.
PATRICK0 -
I remember feeling exactly like you Nita....NitaNita said:All of you..
Sorry I have no idea how to use this thing and if I just reply off myself or each of you. I thank all of you for posting back to me. I literally was in tears. I have no one to talk to but my husband, family and friends but none of them know how I feel. I found out May 14th and was a mess. I have cried everyday since then. I a nervous wreck about the surgery and the thought it could be in the nodes and then will have to do radiation and chemo. They said if its just in the tongue and nodes come out clear I will just have to have the surgery. I am still waiting for them to book the date for surgery so while I sit and wait I keep thinking it's getting worse. I am so glad I have found this site. I have looked on the internet and have been nothing but horrified. My husband has banned me from internet looking..haha! It is good to see the positivity from all of you! Please keep me in your thoughts and prayers!
once I found this board. I am NOT alone in this...and shed many tears reading what people wrote back to me...I felt wrapped in a warm blanket on a cold Montana night.
The folks here WILL follow you and your treatment (me included)...most people say the surgery is the easiest part....so if you get to skip rads or chemo, your recovery will be rather swift. New normals will be less dramatic...a bump in the road of life.
We've all had to play the waiting game here, and it is the HARDEST part. Visions of the disease playing havoc unstopped, while the Drs. make their never ending plans and schemes...but it honestly doesn't work that way, it just "feels" like it.
As one of my favorite posters says.....BELIEVE.....he has said that since my first night on here, and you'll see it in all of his posts. You will continue to be in everyone's thoughts and prayers...
p0 -
Hi NitaNita,NitaNita said:All of you..
Sorry I have no idea how to use this thing and if I just reply off myself or each of you. I thank all of you for posting back to me. I literally was in tears. I have no one to talk to but my husband, family and friends but none of them know how I feel. I found out May 14th and was a mess. I have cried everyday since then. I a nervous wreck about the surgery and the thought it could be in the nodes and then will have to do radiation and chemo. They said if its just in the tongue and nodes come out clear I will just have to have the surgery. I am still waiting for them to book the date for surgery so while I sit and wait I keep thinking it's getting worse. I am so glad I have found this site. I have looked on the internet and have been nothing but horrified. My husband has banned me from internet looking..haha! It is good to see the positivity from all of you! Please keep me in your thoughts and prayers!
Let me add some
Hi NitaNita,
Let me add some more thoughts/answers to your questions:
1. The kind of surgery you will have shouldn't scare you too much. Your neck will be very stiff for maybe a week and it will gradually get back to normal in the following month or two. The tongue will be swollen for several days and you'll just eat liquid and soft foods. But the truth is that after the first couple of days which really suck, you'll notice you'll improve every day and that will make you happy and keep you going.
2. HPV tends to be associated with cancers of the base of tongue but not so much with cancers of the oral tongue. It's always good to be tested, but the results won't change anything in your treatment. I was HPV-.
3. I imagine you'll have surgery within a couple of weeks. Don't worry too much about the cancer spreading.. it's not that today you're fine and tomorrow it'll be all over you. Just focus on what you can do. Make sure you're in good shape and well nourished before surgery. Enjoy a weekend in the sun and the food at your favorite restaurants. Not because you won't be able to do it ever again.. you'll just need to take a few weeks off those things.
Dre.0 -
Awesome peopleNitaNita said:All of you..
Sorry I have no idea how to use this thing and if I just reply off myself or each of you. I thank all of you for posting back to me. I literally was in tears. I have no one to talk to but my husband, family and friends but none of them know how I feel. I found out May 14th and was a mess. I have cried everyday since then. I a nervous wreck about the surgery and the thought it could be in the nodes and then will have to do radiation and chemo. They said if its just in the tongue and nodes come out clear I will just have to have the surgery. I am still waiting for them to book the date for surgery so while I sit and wait I keep thinking it's getting worse. I am so glad I have found this site. I have looked on the internet and have been nothing but horrified. My husband has banned me from internet looking..haha! It is good to see the positivity from all of you! Please keep me in your thoughts and prayers!
Nita, I had surgery November 2, 2011 for cancer of the epiglottis...nodes were taken out to be tested and to be on the safe side, all of them came back cancer free and tests show my wonderful,understanding Surgeon got all the mass..CANCER FREE! No radiation or Chemo was required, My surgeon used the Da Vinci Robot to do my surgery and honestly I had little or no pain and healing was quick, the scar is in a crease on my neck and totally not noticeable now, 7 months later. I have had some after effects which I won't go into because our cancers are different....but, nothing that I can't get through.
My advice is trust your surgeon and his team, and believe in the ONE that gives them the knowledge, talent, and ability to help heal.
I just know you're going to do great!!! God Bless0 -
Hang in there Nita, it canNitaNita said:Wow
As bad as it is to say this I am glad I am not alone. I am having the same surgery as you and they said about 15 to 20 lymphnodes taken out. They don't want to do any radiation or chemo unless the nodes are positive for it. I had a PET scan done and it said that it wasn't anywhere else but it hasn't stopped me from worrying everyday that it could be spreading while I sit and wait for the surgery.
How painful was the surgery? The thought of loosing part of my tongue freaks me out! Dr said he isn't even going to stitch it just caurterise (sp) it and let it heal on it's own.
Hang in there Nita, it can be very scary and i did lots of reading online and was scared of half the crap I was reading. this board has been a lifesaver of resources for me and i just officially joined today i've been just reading threads.
You are going to get through fine its not gonna be the easiest thing you but you will make it through hang in there0 -
Too Young!patricke said:Hey Nita, of course you are
Hey Nita, of course you are scared, who wouldn't be, however, you are very fortunate that the cancer has been diagnosed at an early stage. It also sounds like although you will lose some of your tongue, it will be a relatively minamal amount. The clear PET also sounds promising, and I hope that the partial neck disection results will be negative as well. Certainly the treatment will not be a walk in the park, but based on what you have said, it sounds like you have a pretty good prognosis. You will have some adjusting to do, and new normals to establish, but you will have your life, and that is the most important thing. By the way, I was not a smoker, or heavy drinker, and I had/have one of the healthiest lifestyles (healthy diet, lots of exercise, etc) one could/can have, and I also got nailed. Cancer is an equal opportunity disease. Just remember a couple of things: first You Can Do This (repeat that to yourself a lot when things get tough), and second, again when things get tough, to HIT, and HIT hard, that is, Hang In There. We are all with you on your journey.
PATRICK
Hi Nita, sorry you had to join this horrible co-ed fraternity; but as u can see, you have found a good place to vent, ask questions and get support. It's obviously normal to be scared not only to get cancer; but a such a young age as well. But use this to your advantage; you are young, strong, and have a good social support it seems. Stage 1-2 is early so you are very lucky to catch it so soon. i would highly recommend like others said; you test your biopsy for HPV! it will be good to know if they suggest further treatment. I would get a second opinion about neck dissection, since the PET was negative! Just my opinion. I did have the neck disecction; but that was because that's how I discovered my cancer like most on here; a lump in my right side of neck! No visible ulcer or palpable tumor in oropharynx! Good Luck!! God bless!!
P.S. I would use the oral cancer foundation web-site as well; another great source of information and support!!
Charles0 -
NitaIrishgypsie said:Too Young!
Hi Nita, sorry you had to join this horrible co-ed fraternity; but as u can see, you have found a good place to vent, ask questions and get support. It's obviously normal to be scared not only to get cancer; but a such a young age as well. But use this to your advantage; you are young, strong, and have a good social support it seems. Stage 1-2 is early so you are very lucky to catch it so soon. i would highly recommend like others said; you test your biopsy for HPV! it will be good to know if they suggest further treatment. I would get a second opinion about neck dissection, since the PET was negative! Just my opinion. I did have the neck disecction; but that was because that's how I discovered my cancer like most on here; a lump in my right side of neck! No visible ulcer or palpable tumor in oropharynx! Good Luck!! God bless!!
P.S. I would use the oral cancer foundation web-site as well; another great source of information and support!!
Charles
Yes, Believe- believe that this is just a little bit of rough road you're gonna be on for a short while, and then you'll be able to get back to just living. You will, Nita. This is 2012, and advances in H&N make your surviving this thing a fact- and surviving it very well. That is fact. True, it is what you make of it, but that's the way it is for all of us. But catching it as early as you did, and being as young as you are, as Charles and others have noted- it's all gonna be okay, Nita. Trust me and everyone else on this forum on that.
Nothing can take the fear of C away, Nita, but maybe that's a good thing. A lot of us were/are able to just kick that fear to a place in the back of our heads that makes it kinda distant. But it is still there, however hidden. At the start, though- that was by far the roughest time for me. The hurdle is getting past accepting it all. When you get past that, then the only thing in play is doing what it takes to get rid of this thing that wants to kill you. It/C doesn't know that it don't have a chance of getting the best of you in 2012, or even back in 09 when I went thru it, but your survival chances at your stage, or even my stage-3, is 100% nowadays. It's all gonna be okay, Nita-
Believe
kcass0 -
Thank youKent Cass said:Nita
Yes, Believe- believe that this is just a little bit of rough road you're gonna be on for a short while, and then you'll be able to get back to just living. You will, Nita. This is 2012, and advances in H&N make your surviving this thing a fact- and surviving it very well. That is fact. True, it is what you make of it, but that's the way it is for all of us. But catching it as early as you did, and being as young as you are, as Charles and others have noted- it's all gonna be okay, Nita. Trust me and everyone else on this forum on that.
Nothing can take the fear of C away, Nita, but maybe that's a good thing. A lot of us were/are able to just kick that fear to a place in the back of our heads that makes it kinda distant. But it is still there, however hidden. At the start, though- that was by far the roughest time for me. The hurdle is getting past accepting it all. When you get past that, then the only thing in play is doing what it takes to get rid of this thing that wants to kill you. It/C doesn't know that it don't have a chance of getting the best of you in 2012, or even back in 09 when I went thru it, but your survival chances at your stage, or even my stage-3, is 100% nowadays. It's all gonna be okay, Nita-
Believe
kcass
I can't stop talking about what a great thing I have found with such amazing people out there to help a stranger like myself. Today is my Birthday. I couldn't help at times ask myself "why me". I just turned 35 and this isn't the journey I thought I would be starting. However I know in my heart this is just something that is going to help make me stronger. Maybe someday help someone else that is going through the same thing. I really feel like I am going to be okay and ready to take this on and beat it so I can move on with my life. I have two boys and a husband that all love me very much and continue to be supportive but like I have said before it's people like yourself that help calm me in the storm of emotions and what if's! God Bless each and every one of you for taking the time to talk to me!0
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