So afraid.

MaryRC said:

sportsman
I am happy to hear you have been cancer free for 3 yrs!
This site has helped me so much. I hardly knew a thing before Ifound this site.
I am a bit concerned that with me the doctor hasnt found the primary. I will talk to her about that tomorrow. I am still having some stress, not as bad but still stressed. Have all my family now asking me if I ate something. I know for sure if I have radiation I will have the Peg tube. I cant afford to lose much. I am a nurse and one of my little patients has a feeding tube so I know how to work one.
I am more ready now then I was.
Steve, I like this picture with your wife better then the one with the fish!
Mary

Mary
You are a Nurse. You know how things work. You are now a Patient with a major issue. You now get to step into the shoes of trauma Patients you have cared for. As they have coped with their trauma, with your help, so will you. You'll handle it, Mary, okay.

Believe.

kcass

MaryRC said:

PET scan results.
You sure got yours back fast! Well to let everybody know.... my ENT called me this morning even thou appt isnt until tomorrow. When I saw the number on caller ID I started in with a panic attack. She called to tell me the only cancer shown on the PET scan is in the lump on my neck. We will talk about surgery tomorrow when I go in. She said depending on surgery finding and pathology, then she will know if I need radiation. She said the lump where I have it means usually something oral but she cant find it on the scope or didnt show up on the CT or PET scan.
I have been up all night , my stomach in knots. Ached all over my body. Now I feel like dancing, though I still have cancer!!!!!!!!! I know I will have the surgery soon, I want this damn lump out of my neck. I will be ok with having radiation if thats what it will take. I will be Mary again.
She did tell me my PET scan showed I have a kidney stone. Like big deal!!!!!
I know I will be a big baby after surgery. I have to find out how long a hospital stay.
Will post tomorrow with more news.
Deb, I hope you get good results with your PET as well!!!! Thinking of you.
Mary

Great News


Mary that is great news for the cancer to be all in one place, OK now its time to rest and un-tie those knots in your stomach

Take care

MaryRC said:

PET scan results.
You sure got yours back fast! Well to let everybody know.... my ENT called me this morning even thou appt isnt until tomorrow. When I saw the number on caller ID I started in with a panic attack. She called to tell me the only cancer shown on the PET scan is in the lump on my neck. We will talk about surgery tomorrow when I go in. She said depending on surgery finding and pathology, then she will know if I need radiation. She said the lump where I have it means usually something oral but she cant find it on the scope or didnt show up on the CT or PET scan.
I have been up all night , my stomach in knots. Ached all over my body. Now I feel like dancing, though I still have cancer!!!!!!!!! I know I will have the surgery soon, I want this damn lump out of my neck. I will be ok with having radiation if thats what it will take. I will be Mary again.
She did tell me my PET scan showed I have a kidney stone. Like big deal!!!!!
I know I will be a big baby after surgery. I have to find out how long a hospital stay.
Will post tomorrow with more news.
Deb, I hope you get good results with your PET as well!!!! Thinking of you.
Mary

pet scan
i about did the dance of joy when they finally told me that they were taking that lump off my neck. glad you sound a bit better. keeping you in prayers.

MaryRC said:

doctor appt today
Have ENT appt at 9:45am. At least I wont be in knots when I am sitting there waiting for her to come in exam room since she called me about PET scan. I am still worried though that they havent found a primary.
Alot of you have had neck surgery. How long of hospital stay? Is it very painful, and how long afterwards does your neck stop hurting? I'm probably going to have to have radiation therapy. Think I can handle that since I have been reading all the posts so I know what to expect.
Mary

neck surgery
Hi Mary. Do you have Kaiser? I'll be up at the Bicentennial Ave office today for chemo. Maybe I'll run into you!

I had a selective neck dissection. They took about 30 lymph nodes from the right side of my neck. 7 had disease and a couple with focal extra-capsular extension (this is important to know because it will matter when it comes to treatment).

Where I was cut never hurt. The nerves they cut prevent me from feeling any pain there. What hurt was the random biopsies they did to try and find the primary (base of tongue, nasopharynx, oropharynx, etc.) and the scarring the intubation did. I had pain swallowing for about a week after surgery.

When I woke from the 5.5 hour surgery I had 1 thought 'I have to get the hell out of here'. So milestone 1 was 'get up and pee'. I was able to do that 2 hours after waking. From then on I did everything I was supposed to do. It wasn't an easy night, but because I had focused on all the milestones I went home exactly 24 hours after waking up from surgery. I am told it was 'remarkable' and I think it had everything to do with my mental state. Hospitals are for sick people, not me.

Joe (soccerfreaks) has a great blog (http://csn.cancer.org/user/72176) that details his experience and if you have time it's a great read. I learned a lot from reading it (not done yet! Maybe Joe will write a book about his experience?)

Best,

Mick

MaryRC said:

doctor appt today
Have ENT appt at 9:45am. At least I wont be in knots when I am sitting there waiting for her to come in exam room since she called me about PET scan. I am still worried though that they havent found a primary.
Alot of you have had neck surgery. How long of hospital stay? Is it very painful, and how long afterwards does your neck stop hurting? I'm probably going to have to have radiation therapy. Think I can handle that since I have been reading all the posts so I know what to expect.
Mary

hang in there
MaryRC:
I have not had the surgery like the ENT specialists would have liked to do. My story is similar to yours and others on this page. I was diagnosed with squamous cell cancer. It was on my right lymph node and also on my right tonsil. At the time, my docs did not tell me what stage I was because they believed that to give a number to me would start a defeated stage feeling. They wanted me to stay positive and believe in not only me but them as well. My cancer went from a stage 4 to nothing within a 4 month period. My treatment consisted of ONLY chemotherapy and radiation. I signed up for an experimental chemo drug along with the regular chemo drug. Between both of the drugs and chemo, my lump disappeared within 1 month and has not returned since. I still have my tonsil as well due to the chemo drugs. It went back to normal and the docs left it alone. I have checkups every 2-3 months and yes, I still stress and have "panic" attacks but they aren't as bad as when I started everything last year. Stay positive and ask lots of questions! Try not to let the fear take over. Get mad at the fear, try not to let it control you and remember that you are a strong person. Good luck and my prayers are with you. God bless.

MaryRC said:

Back from ENT
Had ENT appt today. She told me how well prepared I was and how calm I was, I said it was because I have been researching and I have been on here with all the emails and replies.
I am going to be having surgery, soon as insurance is called and put on hospital schedule. First she explained I was going to be having all the scopes and biopsies searching for the primary. Then she will so the neck disection. She explained the whole thing to me step by step. Said will have a drain in my neck. She did tell me I can be in the hospital for at least 2 days or so. She said to talk to the anesthialogist, since when I had shoulder surgery I got so sick from that. ugh.
then depending on results of all the biopsies, will then know what else is to be done. I am prepared though. Cant believe how better I am about all this.
She said I can go back to work in 2 weeks unless I do any lifting. I told her one of of my 2 clients is a 70lb boy I have to lift into and out of things. She said no way... 6 weeks then.
Does anybody know if a person can go on partial disability? My girl client doesnt require lifting. My husband told me to take the whole 6 wks off, I need to rest and build myself up.
Thanks to all of you guys I didnt go in there unprepared!

Mary

Hey Mary
Yes - I think you would qualify - especially with the special needs kids at that you are lifting. I don't think you can do partial though...Its all or nothing. Ask your HR department- There is tons of info online too. It is your right by law. That's why we pay all these damn taxes so use the system! that is what its there for. There are forms to fill out by your Dr. I don't think they would question it at all. The ONLY annoying thing is that it takes a little while to get into the system. The state pays you a portion of your paycheck depending upon how much you've contributed. I just didn't have it all together before I went into the hospital.

Well I'm thinking of you and hoping for a full successful and speedy recovery.
I know its frustrating when you live a healthy lifestyle and bam-- this happens. You're gonna beat this.

Hang in there- I know its scary!

You are gonna do great

K

MaryRC said:

Back from ENT
Had ENT appt today. She told me how well prepared I was and how calm I was, I said it was because I have been researching and I have been on here with all the emails and replies.
I am going to be having surgery, soon as insurance is called and put on hospital schedule. First she explained I was going to be having all the scopes and biopsies searching for the primary. Then she will so the neck disection. She explained the whole thing to me step by step. Said will have a drain in my neck. She did tell me I can be in the hospital for at least 2 days or so. She said to talk to the anesthialogist, since when I had shoulder surgery I got so sick from that. ugh.
then depending on results of all the biopsies, will then know what else is to be done. I am prepared though. Cant believe how better I am about all this.
She said I can go back to work in 2 weeks unless I do any lifting. I told her one of of my 2 clients is a 70lb boy I have to lift into and out of things. She said no way... 6 weeks then.
Does anybody know if a person can go on partial disability? My girl client doesnt require lifting. My husband told me to take the whole 6 wks off, I need to rest and build myself up.
Thanks to all of you guys I didnt go in there unprepared!

Mary

Hi Mary

Information is a blessing, I too am so glad to be here on CSN, I only wish I would have found CSN when I first had Cancer. I believe your ENT and Husband or right on the money about taking the full 6 weeks off to heal, you don’t what to hurt your self going back to early and end up with more problems.

All the best to Mary

MaryRC said:

Thankyou
I get to feeling guilty I guess about not working. Have the parents of the 2 kids asking me when I am coming back. I do homehealth nursing to special needs children. I love the 2 I care for and miss them. Both parents support me though and want me to heal and they want me back soon. I guess I couldve been working up until I had surgery. But after the doctor called me at work 2 weeks ago I havent been the same since. I wrote about it at the beginning here, sort of a breakdown. I am still feeling depressed, but not as bad. Just wish I could get rid of the knot in my stomach. My husband is after me to eat and I try.
It might be longer though I am off then 6 weeks, from what I have been reading here on radiation therapy and possible chemo.
My doctor said we got this early,I hope so.
Thankyou all for being supportive. People that don't have cancer just dont understand.
oh... does anyone know if they dont find a primary,could that mean the body distroyed it? I forgot to ask my ENT that. She is going to be doing all the scopes and biopsys to search for it. She is checking my tonsil area even tho I had them out as a child.
I must call my husband and him I ate my breakfast before he sends out the food police!
Mary from foggy northern California

no primary
Hi Mary.

They have not found the primary in my case. When you have the neck dissection, they will likely do random biopsies of suspected sites (nasopharynx, oropharynx, base of tongue, tonsils, etc.). If they don't find the primary they may suggest radiation of the entire mucosa as they have in my case.

You have two sets of tonsils, those big ones they removed when you were a kid (and me) and two that are a bit lower and smaller that are still there.

It would be best to find the primary because that way they can target the radiation and reduce damage to surrounding tissue. If they don't find it the damage is going to be wider and more painful, making swallowing difficult. Make sure and get details of the treatment plan, which may come slower than you want. Consider the PEG especially if have a low tolerance for pain and are unmotivated to eat.

Best,

Mick

MaryRC said:

waiting for surgery
Still waiting for doctors office to call me about when I am to have surgery. I want to get it over with. I want to get this lump off the back of my neck. Doesnt hurt but knowing it is cancer sitting on my neck, it is like an alien took control of my body. Not feeling as depressed today. Think I am going to get out and walk, get off this couch.
I most likely will have the radiation, seems like it is used for everyone on here.
I think I am prepared for it all now.
Mary

Well educated
Mary,

Good luck. I think you see that everyone on this board made it and all of us with varying degrees of after effects. You know that it won't be easy which is a lot more than most people who start vthis program. But then you also know that all of us are pulling for you.

Just remember while you are doing all this that it is the treatment making you feel they way you will and when it is over you will return back to an "almost normal" life.

Kind of likie going through military boot camp...take it one day at a time because it won't be this way forever.

MaryRC said:

something to smile about this evening
Was sitting here feeling down and sad. My phone rang, my son and daughter in law in Phoenix calling to tell me the news that they are pregnant with their first child. I started smiling and crying. My son said Mom are you ok? I said these are happy tears! Told them I will be out there to see my new grandbaby when he/she is born in Oct. I will be strong and I will be me! I sure needed this tonight!
Mary

wow
A granchild for you. How incredibly wonderful! Yet another reason to be strong and fight. Congrats!