#50970 10-22-2004 10:18 AM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | I don't really want to expound too much because my Uptown reads these posts, but there are some things possibly going on with his wellness and I'd really appreciate it if you folks will pray or do whatever your religious belief encourages while we "hurry up and wait" to see if the stuff happening is just stuff happening or if the shoe's about to drop. I've decided that it isn't inappropriate for me to say I'm an emotional weakling right now. I almost got used to things being okay and stuff started looking up...possibility of job, scholarship(ish) to go to school... I love that silly goose so much I can't imagine the what if...  Thanks for just being there to encourage us all and to have a safe place to admit you're scared without being ridiculed. Yes, I know worry doesn't change a thing but prayer sure does! Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50971 10-22-2004 10:34 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Susan
We all know the fear you are dealing with...and you are no wimp girl. We would be silly not to worry, even though we tell each other not to!
That hubby of yours is such a generous guy with his time, and, always goes out of his way to try and answer any and all questions on the board.
He is in our prayers, Big Time!
Much love to you both
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#50972 10-22-2004 10:59 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Susan, praying is one of the things we do real well here. We all have lots of practice at it for the whole board as well as for our own issues. Of course we will continue praying. I will add you to the list also as I'm sure the love is returned and you need His strength as well. Whatever the issues, just remember it isn't anything til the pathologist says it is. And if it is, you'll both deal with it as you need to. And we will be here to help you get through it. God bless you both.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#50973 10-22-2004 01:56 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Dear Susan,
There are so many wonderful people who need help and many Angels who help others that are found on this site & I believe we are guided to each other when we need to be in touch.
I and my family will pray for you & yours.
Take care
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#50974 10-22-2004 04:12 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Susan, I'm not a particularly "prayerful" person, but I sure will be sending positive energy, good vibes, rainbows, pom-poms and anything else you want to call it.......to both you and Ed. You are both such special people. Do your worrying now and get it out of the way, because we all know this is a false alarm. All is fine and will continue to stay that way. Quite simply, the forum can't afford to lose you guys and your valuable input, so you are both here to stay! We're not giving you any other choice!!!  Seriously, I fervently hope this stuff is just stuff, but you are entitled to worry and fret all you want. It's just the nature of the beast and you're not getting brownie points for being strong and stoic, so use our collective OCF shoulders to lean on as much as you want. Rainbows & all that other good stuff winging its way to you both,  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#50975 10-22-2004 04:46 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Susan, you have got it, no need to place the order for you are all on prayer lists all over this great land of ours. You are in mine all thru out the day and night. I am a believer in GOD and of the prayer, just because you don't see them, doesn't mean they aren't answered. Gosd Bless you both,, and you are not a WHIMP, honey look at what WE ALL have been thru. If anything we are STRONG as HELL. There are so many that couldn't handle all this...WE are all very very SPECIAL PEOPLE...I BELIEVE THIS AND SO SHOULD YOU,,always Miss Vicki | | |
#50976 10-22-2004 04:54 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Susan, please read below and read it each night until they tell us that Ed is just fine.
I am in a hurricane right now.
I've been here before.
And I survived.
I am not alone.
God is with me.
My faith sustains me.
It has never failed me.
I'll come through this.
I am strong.
I am loved.
This too will pass
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#50977 10-22-2004 05:52 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Susan,
Ed's a great guy. He's definitly in my thoughts, as are you. You are by no means an emotional weakling. Ed is lucky to have you. All of my best wishes to both of you.
D
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#50978 10-22-2004 05:54 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Susan,
I really think that this diesese has all of paranoid of every little thing that changes. I am here for both of you and I love you both dearly. My prayers are with you.....
Big Hugs,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#50979 10-22-2004 09:49 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Susan
Wimp, no way girl.. no-one on this forum would ever think that, and yep we all can turn worrying into a world championship event..
So prayers, good vibes, and lots of hugs to you both..
love and stay in the sunshine..
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50980 10-26-2004 10:27 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Susan,
Stuff will keep happening and I know that this is hard to do, but ruining your health worrying about it will not make the problem go away. I hate waiting as much as anyone but we cannot let this disease consume our lives and spirits. You already know several of us who have survived reoccurences or in my case a completely new occurrence. Don't assume that a bad dx is a death sentence cause it ain't. His dr is watching this carefully and told him to do the same. Here's hoping it is only stuff.
While, like Rosie, I am not religious, I do send you and Ed all the good vibes and postive energy I can muster. Pull the plug on that computer at night and forget about cancer for a while. There are much more pleansnt things to do. Meanwhile, go find me that stuffed cabbage recipe you promised me in Vegas.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#50981 10-26-2004 04:36 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Oh, my gosh! I got sucked right into stinking thinking and TOTALLY forgot about the stuffed cabbage recipe!
Thank you (everyone - no exceptions) for the love and encouragement. Tomorrow is the day to verify it is nothing and if it isn't "nothing" I'm praying it's nothing much. You know it's like water torture some times. The slow drip on your strength, erroding any resistance you have. Never had any recurrence before so I guess I just better stop ANTICIPATING recurrence and get on with life. (Where did it go over the last year and a half?)
Only good juju for tomorrow! I'm pulling the plug for tonight.
Hugs to all!
Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50982 10-26-2004 06:00 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Ed & Susan,
I will be saying many extra prayers for you tommorrow.....
Love & Huge Hugs,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#50983 10-27-2004 02:27 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Susan!
I pray that tangled knot of discomfort lurking inside you is untwisted today. It is such a burden to carry discontent, and you can't consider yourself a wimp.
I'll be waiting along with everyone else to hear good news after your appointment.
Love,
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#50984 10-27-2004 03:05 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Scrippity doooooo! I was all a bunch of pooooh!
I didn't go with Ed (and it was killing me, but he didn't ask so I didn't offer until he was walking out the door). I don't know the doctor's exact words but what I heard when Ed called with an update was (this is what I could hear Dr. Sinard saying), "You're not the only guy showing up here freaking out over lumps and things. Come any time you feel like something's not right... Oh, wait a second! I've got an idea! Let me feel around your neck and tell you what I feel then you feel around and tell/show me what you feel. Don't get too worried until I get worried. You're too soon out of the PET for multiple nodes to appear out of nowhere without SOMETHING appearing on the scan. Your body is doing things it never had to do because it never had radiation, chemo before and your body is having so many changes - hang in there - you're doing fine, see you in 7 weeks if you don't freak out before then." Maybe Ed heard something a little more coherent.
Thank you everyone! Like Ed said before he rang off, "I guess I'll just go to work then." (and he's having a second interview for a serious opportunity tomorrow - first time in a mega long time (4 yrs) that we/he may be close to having "normal" in our house.) Pray, pray, pray. Good juju! Only good juju!
I love you guys!
Susan
(with a Groucho nose so no one will recognize it's really me being so goofy)
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50985 10-27-2004 11:23 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Yeh Way to Go Girl...Enjoy your day.. Relax.. chillout..
Stay in the Sunshine...
love and big hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50986 10-28-2004 01:52 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Susan,
I get all kinds of lumps on my lower neck but they're always knotted muscles, which is very common for people on a computer a lot. Stress and tension don't help either - but the enlarged lymph node scare resurfaces from time to time as a result of it. I wish my doctor had a device where you could feel the difference between a knotted muscle and a lymph node.
By the way "juju" is based on voodoo and witchcraft -I am not sure that you want to summon the "powers of darkness" for Ed's condition. :p
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#50987 10-28-2004 05:01 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Susan, glad to hear that things turned out ok. I don't recall ever going into the doc's, or a scan where I didn't think I had multiple recurrances. One time I counted 7 possiblilties. Of course the scan came back clean.
I wish my wive could have made it to the Vegas get together and could have met all the other caregivers so she could know that others feel the same way she does sometimes about this experience. Maybe next year.
So now time to enjoy and look toward the future.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#50988 10-29-2004 06:34 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Susan,
Glad it turned out to be nothing, but it is always good to have any abnormality checked out. I make Charlie go with me to all my appointments. Seems the only time he doesn't go, my 'stuff' turns out to be bad news or the dr finds something suspicicous. He's my good luck charm.
Now go hug that loveable Ed and the two of you go out and celebrate.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#50989 10-29-2004 06:36 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Susan!
Such good news to hear!! A toast to you both this morning and a collective sigh of relief!! Have Ed check out Amgen here in the Seattle area. Here they are hiring. Love - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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