Posted By: minniea Area of concern - 08-18-2007 05:06 PM
Hello all,

I wrote a few months back that I was having trouble with an area under my tongue, caused by it consistently rubbing against my new implants. I do not wear my upper denture, so when I eat, I use a tongue thrusting motion that causes the contact between the underneath of my tongue and my bottom teeth. This has created quite an open area under my tongue that just won't heal. It trys to and at times seems like it is, but then I get really hungry again, eat alot, and we're back at square one. Over the past month I have convinced myself that it wasn't from my teeth but that it was cancer. Our mind is a dangerous tool at times and I used mine to put myself into a tailspin of depression and anxiety. My husband finally stepped in and took me to my oncologist yesterday, who of course was stuck in surgery, but I did get to see two of his partners. Both of them did a thorough examination of me and both told me that they do not believe this is cancer but a mechanical injury that isn't healing due to the radiated tissue, the fact that my tongue is tied down in that area which limits the blood flow and my poor nutrition. I had no idea I had lost 15 pounds in 3 weeks. But if you have ever had an open area like this in your mouth, you know how very painful it is. I'm not very big to begin with and losing that amount of weight makes a drastic difference. Needless to say, I look like death right now. I spent the last week talking to my husband about how I wanted the three youngest girls raised, tons of details, talked to him about life without me. I clearly went overboard and went to a place that I don't think I've been to yet in my time with dealing with cancer.
I elected to see my regular doctor on Tuesday and will ask him to biopsy the area, which is what I believe he would do regardless. The other two docs are fantastic and I trust them, but I want it definitive.
They also put me on an anti-anxiety medication and an anti-depressant. Shocked me for sure. I had a full blown break down in the office with my 25 year old daughter witnessing it all. I'm so ashamed of that, she is trying to finish up her masters and has SO much stress on her right now.
But, I have to say that the meds made me get a good nights sleep, even if they do make me feel weak.
A lesson for all of us: Don't be afraid to see your doctor about things, don't let it go on so long that you create horrific outcomes in your head. AND, TALK to your family about it! I'm so super protective about guarding my husband and kids from this cancer touching them any further that I put myself through a lonely HELL. I need them when I feel like this and they want to be there for me.
Love to all,
A very medicated and very calm Minnie
Posted By: JAM Re: Area of concern - 08-18-2007 05:42 PM
Minnie, all I know to say is "Good Grief". I'm so sorry you have been struggling with that. You are one of the strongest amongst us and so supportive. Hope you will let your family[ and us] support you when you need it. And glad to know
the meds. are taking the stress level down. Amy in the Ozarks
Posted By: Gary Re: Area of concern - 08-18-2007 09:33 PM
Minnie,
you're going to end up in a "love suit" on meds from "The Cuckoo's Nest", grooving to Montovani.

Freedom from fear is something we can can all control a little and that is by making that appointment sooner rather than later to rule out recurrence.

I feel your fear - I go through it on a regular basis myself.
Posted By: sharlee Re: Area of concern - 08-18-2007 10:25 PM
Minnie..


No matter what ..I look up to you ..we all have fear and breaks downs and some how get through em ......I am happy things are going better


xoxoxoxo
Shar
Posted By: minniea Re: Area of concern - 08-18-2007 10:51 PM
Gary, you're scenario had me cracking up over here. I've actually laughed and relaxed SO much today....my kids found me fascinating to say the least. I cooked, I cleaned, I organized, it was amazing and so needed. I never realized how much anxiety can affect a person.

Amy, Trust me, I will not try to go through something like that by myself again. I didn't want to worry anyone on the board, so many going through so much right now. But, I won't do it again because I don't think I could handle it!

Sharlee, thank you for the kind words honey. Hope you're feeling better cause it sounds like you have alot on your plate!
Posted By: Donnarose Re: Area of concern - 08-18-2007 11:06 PM
Minnie,
Just read your post; thanks for the lesson.

I hope that you are feeling better.

Fear is an amazing weapon, I think it sets us all back at times, and at others, gets us moving in the right direction.

Enjoy the rest of your weekend!
Posted By: Dr. Mike Re: Area of concern - 08-19-2007 12:02 AM
Minnie,

From what I have read you are an intelligent woman. I'll pray for you to find your inner strentgh and once again become the unmedicated "you".

Been ther done that...when I had cancer ten years ago...it was hell!!

So...my professional advice go get yourself a proper fitting and functioning denture. If mechanical trauma is the problem there is only two ways to stop it. !. Don't eat...not gonna work. 2. Get a new denture. No matter what the cost it's cheaper than the personal hell you have been going through. ( Go to a Dentist or Prosthodontic specialist...most denturists won't provide a denture with the proper borders and support to allow proper function.)

My next suggestion is give your husband a hug and your daughters, tell them you love them it will make all of you feel great. Next time, hopefully never happens, use your whole team to help you sometimes the captain needs some support too.

Hope everything gets better!!

Mike
Posted By: emmylou1951 Re: Area of concern - 08-19-2007 01:00 AM
Minnie: Self-less you! You are always so supportive of everyone here, and your responses to my many questions have been invaluable...then YOU have a concern and 'don't won't to worry anyone'....Come on, girlfriend...Aren't we all in this battle together? Don't let this happen again...You are much loved.......

Lois
Posted By: minniea Re: Area of concern - 08-19-2007 01:26 AM
Yes, Lois, we are all in this together, that's for sure. I just hate worrying people, it's been a life long curse and I hate thinking that my situation is upsetting others. Just the look in my daughters eyes in that office yesterday when I broke down made me want to kick myself for allowing it to happen. I am such a controlled person so that was a low point for me. But it did make for a very open conversation between the two of us on the way home, I think we became closer in an adult way.

Thank you to ALL of you for the support. I needed it, I asked for it, and I received it. It's really that simple isn't it??
Posted By: Dr. Mike Re: Area of concern - 08-19-2007 01:40 AM
Good for you minniea!!

I thought it was that simple...but it took the eyes of an innocent 7 month old son to let my wife and family know ten years ago! Like yourself minniea I always thought I had to control and shelter all around me...I was wrong.
Hope you and your daughter are healing.
Cheers,
Mike
Posted By: Gary Re: Area of concern - 08-19-2007 03:01 AM
Minnie,
the good thing about OCF is that we don't all have to be insane at the same time. (PS the name of the Montovani song in The Cuckoo's Nest during med time was "Charmaine")

Maybe Brian needs to add another "F" - "Oral Cancer Fear Factor".

I had a scare this week myself which had me running back to the H&N surgeon, three weeks after my routine 4 month followup - it turns out that I have some kind of candidiasis (they cultured it, will find out next week). It's not typical thrush - no white patches - but I'm taking an anti-fungal and it's responding. Kind of strange after 4 years of not even having a cold. I had severe problems with thrush going through treatment - I took 400mg of Diflucan daily as a maintenance dose. They have me on Clotrimazole because of my liver (Diflucan is hard on the liver and during treatment the risk of thrush going systemic was far greater then the risk to the liver). I've also been getting exhaustive liver tests because my numbers spiked during my 6 month labs - actually got an automatic referal to a gastro-enterologist liver specialist. I have HCV so they have to watch that as well - hey - stereo fear factor;-)
Anyway all of the numbers dropped in a followup bloodtest(s) and a Fibrosure test indicated mild scaring so they recommended waiting a few years until better drugs are available. It's a slow moving freight so I am not too concerned. Sounds like a plan to me. I have no burning desire to have Interferon and Ribivarin ct.
Posted By: aussieh Re: Area of concern - 08-19-2007 06:12 PM
Dear Minnie

You have been the giver of support during the four years I've known you. I also had to learn to open to the love offered by others - one of the gifts cancer brought to me. I am so pleased that your support group has rallied and that you are well.

Love and light from Helen
Posted By: wilckdds Re: Area of concern - 08-19-2007 10:29 PM
Gee, Minnie, when we were emailing in May and June it seemed that you were healing and it sounded like the sore was going away.

I was so sorry to read that you have been going through such mental anguish over this. I can understand why you want to get the biopsy done. Are you seeing your ENT or the dentist next week, you said your regular doctor?

I don't think you've mentioned why your upper denture is no good, but as Mike said, getting a functional denture up there, will help a great deal to solve the problem of your tongue rubbing against the lower implants.

As always, feel free to call me or write, if that is easier.

Jerry
Posted By: ChicagoSteph Re: Area of concern - 08-23-2007 11:30 AM
Hi Minnie,
I am currently the 25 year old daughter of a man fighter cancer, so I felt compelled to write. All I can tell you is that we (your daughter and me) WANT more than anything to be there for you. We know you're scared and anxious and all the other emotions you all must be feeling, but we want to help. Since we can't do anything to actively fight the cancer the way a doctor can, please let her be there emotionally and with the every day stuff. I'm getting married in December and trying to plan it while dealing with all this, so I understand you trying to protect your daughter and not wanting to add one more "thing" to her plate. But you're doing both yourself and her a favor by letting her in. I'm sure part of her was relieved to see you break-down. You're letting yourself be human...

I also want to thank the rest of you for all your posts. I mostly "lurk" here, but I've learned SO much and really feel like I am now contributing to the fight. You're all in my prayers.
Posted By: Nelie Re: Area of concern - 08-23-2007 12:13 PM
Minnie, I'm so sorry you went through that but so glad it turned out to probably not be a recurrence. I have a spot on my tongue that intermittently rubs against my teeth, esp. now that I am trying to get all my nutrition orally and it often worries me although both my dentist and my ENT say it all looks OK.

I can tell from your posts how much regret you have about breaking down in front of your adult daughter but I suspect it will forge a new closer and more adult relationship between the two of you, and may have let her feel important to you in a way she hadn't before. And you need to let yourself be human, you know.

I wish you had posted about your fears here, I think several of us could have encouraged you to get in and see the doctor sooner before assuming you had a recurrence. I've done that fearful and keeping quiet over a scare myself, it's no fun.

I feel like you have been such a constant support though, through everything I've been through, I would have loved to be able to give more back.

Nelie
Posted By: emmylou1951 Re: Area of concern - 08-23-2007 09:09 PM
Minnie: I'm sure you will post just as soon as you have your report. I just wanted to give you a BIG HUG and tell you how special I think you are! I'm sure all the rest feel the same.
Lois
Posted By: minniea Re: Area of concern - 08-25-2007 03:57 AM
Hi Everyone,
I had a biopsy done on Tuesday and will get the results this coming Tuesday. I won't lie, I'm terrified. My doctor said he didn't like the way it looked but that he also couldn't tell me by looking at it if it was cancer. He said it had signs that were not typical of cancer but he was concerned that it hadn't healed by now. He also sent me for a CT scan in case, which I had done today. The area itself looks better today then it has in a couple months so we think that's a positive sign. Four years of easing off my worries and now they are right at the forefront again. My husband and I have had some deep talks the past few days, some alone, some with the older girls, and have all plans in place if it's the worst case scenario. Brian, if it is positive for cancer, my husband has asked if you would talk with him.
So, pray, send up good wishes, do whatever it is your spirituality dictates in your life. I didn't want to bring this to the board cause we have enough "bad" news going on but I realized how much I need to bring it here. Hopefully, on Tuesday, I can post some good news. If not, I will come here and start another battle with the support of all of you.
Love,
Minnie
Posted By: Nelie Re: Area of concern - 08-25-2007 08:52 AM
Minnie,

I hope you can feel all the prayer, well-wishes and love being sent your way (and to your entire family as well) because there are so many people on this board who care about you and are hoping you have that best possible outcome. And we will be right here for you whichever way it turns out, of course.

Just for what it's worth, the fact that the area looks better sounds like a good sign to me too. My tongue cancer never got "better" at all back when I could see it and didn't know it was cancer--just gradually worse and worse.

I know it's going to be a long wait until Tuesday for you--I hope you can spend some of the time doing something enjoyable and manage to get your mind off it even!

Nelie
Posted By: Stoj Re: Area of concern - 08-25-2007 12:05 PM
Minnie,

Yours is the post I fear to read. I'll pray for good news for you.

Tim
Posted By: JAM Re: Area of concern - 08-25-2007 02:23 PM
Minnie, God Speed, Amy in the Oz
Posted By: emmylou1951 Re: Area of concern - 08-25-2007 04:54 PM
Minnie: Thinking of you, and praying that God will give you the strength and patience you'll need until you get your report. Just know that all of us love you and care for you and your family........
Posted By: helen.c Re: Area of concern - 08-25-2007 05:35 PM
Minnie
Gary say we are not all insane at the same time
:rolleyes:
Well you and me are going to be good company for each other in the asylum eek
I wasn't going to post this but having read your post and not wishing to steal your thread, I suppose you are the best one to share this with.
My 'area of concern' is an ulcer ( not immediately visible to me) on the scar tissue at the back of my tongue and the margin of the graft. It has been painful for a few weeks, so took my self to my dentist yesterday. He performed his tricks with the mirrors and found the ulcer.. Unfortunately he also found an enlarged lymph node in my neck.
This weekend is a holiday weekend, so the earliest I can phone the hospital is Tuesday. Oh and the next head and neck clinic will be a week on Monday the 3rd of Sept.
So for the next 7 days can I climb the same wall as you.
Will light candles and say a quiet prayer for you. Sorry to have hogged your thread. ( will mail you anyway)
Sunshine.. love and hugs
Helen
Posted By: tizz Re: Area of concern - 08-25-2007 07:00 PM
Minnie,

I hope it will be good news on Tuesday, my love and best wishes.

Oh Helen, I'm very sorry to hear that. Good luck on Tuesday as well, love and hugs.

Tizz
Posted By: Steve J. Re: Area of concern - 08-25-2007 11:26 PM
Hang in there Minnie! You are in my prayers.

-Steve J
Posted By: mhupe Re: Area of concern - 08-26-2007 06:01 PM
Wow, Minnie and Helen...so sorry to read about the stress of your current situations.

Praying for really good news for each of you on Tuesday!
Posted By: wilckdds Re: Area of concern - 08-26-2007 10:43 PM
Minnie and Helen, you will both be in my thoughts an prayers.

Jerry
Posted By: marliz Re: Area of concern - 08-26-2007 11:17 PM
Hi Minnie, So sorry to read what you've been going through. The best thing about OCF is that we know we're not alone as others have felt that same fear, lost our composure big time, par for the course so don't feel bad because your normal.

I've had the same problem, among others, this past year so hope I can help you a bit here.
When I had cancer 5 yrs ago I was on a liquid diet 4 years but finally found one spot on dentures that I could chew pretzels and swallow as long as I uesed yogurt for a dip. Well, let me tell you I was a very happy camper as long as I could have that crunchy food to look forward to.
So I chewed a lot of pretzels even though it was hurting more every night as I took my dentures out for the night. Finally I couldn't take the pain anymore went to dentist for adjustment. He was very upset when he saw this large white patch on roof of mouth,and insisted I get biopsy.
Before I could get it looked at I had that bleeding episode in May.

I'm pretty much over that and have apt. 9/4 for biopsy though oral surgeon doesn't think it's anything and I'm pretty sure he's right as it has shrunk a lot since I've been off pretzels 3 months now.

What I want to tell you Minnie is that we don't have to get skinny because we can't eat regular food. I'm back on liquid food, mostly Nutren 1.5
complete high calorie liquid nutrition.
Yes it tastes terrible, add chocolate, strawberry boost and pour over ice.
I remember after my radiation 5 years ago when food was out of the question the only thing that kept me alive was chocolate Ensure poured over ice was the secret.
Like you I looked like death warmed over till I realized I could die, Anorexic, if I didn't get serious putting nutrition in my body.
Trust me it's very hard to get that weight back on.

So Minnie get yourself some Boost, ice cream, anything to get some nutrition. We can't fight without some real nutrition in our body. There is nothing we can chew with this much food value.

I hope your test comes back nagative and from now on you go easy on the chewing. I know I gave up pretzels PDQ when I saw the look on my dentist face.

Good luck and best wishes to you all as we hold out breath for Minnie this week.
Posted By: RileyMc Re: Area of concern - 08-27-2007 12:10 AM
[quote]I do not wear my upper denture, so when I eat, I use a tongue thrusting motion that causes the contact between the underneath of my tongue and my bottom teeth. This has created quite an open area under my tongue that just won't heal. It trys to and at times seems like it is, but then I get really hungry again, eat alot, and we're back at square one. [/quote]What does your dentist/oral surgeon have to say about this?
Posted By: minniea Re: Area of concern - 08-27-2007 01:10 AM
McRiley, my dentist, who is a specialty cancer dentist, told me two months ago that he was not concerned that this was cancer. He said he could see where it was rubbing on my implants. He shaved my implants a bit yet the area didn't heal. So, now the biopsy. I will say that day 5 after the biopsy it looks better. The edges have healed, the color is the same color as the rest of my tongue and it doesn't hurt. We shall see on Tuesday. I just can't shake a bad feeling about this, which isn't like me.
Posted By: minniea Re: Area of concern - 08-27-2007 01:15 AM
Marliz,
You are so right about the nutrition. My husband has become my warden and I think I gained at least two pounds over the weekend, lol. He's such a good man, for his sake more than mine I pray that my biopsy is negative. He just landed the biggest contract of his career...........it will put us in a place financially that we've never been before and never dreamed of being. For me to get sick again right now would certainly mess that up for us.

Thanks for the advice and the kind thoughts.
Minnie
Posted By: minniea Re: Area of concern - 08-27-2007 01:16 AM
Helen.............if I had to pick a cellmate at the insane asylum..............it would certainly be you hon! I'm praying for both of us.
Love,
Minnie
Posted By: Donnarose Re: Area of concern - 08-27-2007 09:34 AM
Thinking of you ladies....
Tuesday seems to be a big day for a lot of people this week!
God Bless everyone.
Posted By: deni Re: Area of concern - 08-27-2007 09:41 AM
Minnie and Helen
Hugs and ((((Positive Thoughts)))
Bob had a questionable chest xray two weeks ago and we just got good word that his CT was all clear..as I breathe my own sigh of relief I send all that good energy to BOTH OF YOU...you are both very very special ladies
Posted By: Lisa S.D. Re: Area of concern - 08-27-2007 07:03 PM
Dear Minnie,

You have been a tower of strength, a shoulder to lean on and a sympathetic ear for so long to everyone here including me when my Aunt was fighting and losing her battle. I feel so very guilty about not reading the board over the last four or five days because I've been absolutely miserable with the discomfort and weirdness of a recent root canal tooth. Now I really feel guilty!! I'm a wimp compared to you guys. I am SO very sorry for what you are going through. Please don't keep your feelings and fears locked inside you, lean on your family.
They love you. That's what they're there for. It's amazing that sometimes all we need to get us over a bout of terrible anxiety is for someone we love to just hug us and not let go.
My hopes and my prayers are with you. I will pray very hard that tomorrow is a good day for you.

I know you don't feel like eating right now but please do eat to keep up your strength, so that your stomach has something to work on, so that your meds aren't floating around in an empty stomach and so we don't have to call you Skinny Minnie.

Did I make you laugh??

My prayers tonight are for you, Helen and Dr. Mike. God be with you all and give you strength.

Hugs,
Lisa
Posted By: Kris Re: Area of concern - 08-27-2007 11:01 PM
Minnie and Helen-
My prayers are with you both as they have been throughout the years. The waiting is always the hardest, so know that there are others holding you up right now! Love, Kris
Posted By: Cookey Re: Area of concern - 08-28-2007 01:36 AM
Goood luck and positive thoughts winging their way across the pond.

i will be thinking of you both today

much love liz
Posted By: Nelie Re: Area of concern - 08-28-2007 07:32 AM
Minnie and Helen, Thinking of you both today and sending out my deepest wishes and positive thoughts thst you both get good news.

Nelie
Posted By: minniea Re: Area of concern - 08-29-2007 01:18 AM
Hello Everyone,

The other shoe dropped for me today and I was re-diagnosed with cancer in my tongue. He is staging it at a Stage 2 but if one lymphnode that showed up on my CAT scan is positive then he will move it to a Stage 3. He was positive with me today while at the same time being honest. I go Friday for a PET scan and if anything shows up in my lungs we will not go forward with treatment for the tongue. If all is clean, then I'm having what he called an exploratory surgery on Wednesday so that he can look down in my throat and under my implants without causing me discomfort, he'll sedate me. After these procedures, I'm flying to Boston to Dana Farber for a consult, we started setting that up today. I do believe this time we need a second opinion.

Treatment planned thus far is a partial glossectomy and a neck disection. Feeding tube will be put in and he went on and on about how I probably won't be able to swallow or eat again and I immediately thought of people on this board! I know many of you with partial glossectomies that eat and swallow just fine.

I will write more later, it's been a long, drawn out day. My poor, poor husband. My heart is breaking for him. My girls are troopers, pulled together and had me lauging most of the evening.

Minnie
Posted By: aussieh Re: Area of concern - 08-29-2007 02:55 AM
Dear, dear Minnie

I am thinking of you here and know you will approach this recurrence with the wisdom that you so often share with others.

I, like many here, have benefited from your support and send you and your family love and positive thoughts.

Your friend Helen
Posted By: Cookey Re: Area of concern - 08-29-2007 03:20 AM
Oh minnie ,what can i say.The news none of us wanted to hear.My deepest ,deepest love and support are sent and i will follow you progress avidly.

love liz
Posted By: tizz Re: Area of concern - 08-29-2007 03:24 AM
Ditto.

Love,

Merrie (Tizz)
Posted By: Nelie Re: Area of concern - 08-29-2007 08:40 AM
Minnie, I was so hoping I would get on to find you had good news, as I know everyone else was. Dana Farber is a great place to go for a second opinion (you may remember it's where I went). I am keeping you and your family in my prayers.

Nelie
Posted By: Donnarose Re: Area of concern - 08-29-2007 09:38 AM
Minnie-
My love and positive thoughts to you.
Donna
Posted By: mhupe Re: Area of concern - 08-29-2007 10:06 AM
Minnie,

So sorry it's back. You are in my thoughts and prayers.
Posted By: brenfran25 Re: Area of concern - 08-29-2007 10:43 AM
Well Minnie---here you go again--and with a plan, as usually suggested for others.

I will be keeping you in my thoughts and hoping the lungs are 'clean'

Love and support

Brendax
Posted By: August Re: Area of concern - 08-29-2007 11:31 AM
Minnie.....I have to add my prayers to those of your other friends on the forum. You have been such a supporter of the rest of us, now it is our turn to give you an arm to lean on.
Posted By: Eileen Re: Area of concern - 08-29-2007 01:51 PM
Ah Minnie, I was hoping that I wouldn't have to read this bad news. I was 4 years out when I was diagnosed the 2nd time and I'm still here. It sucks but you can do it. I'm praying the lungs are clear but even if they are not, they may be able to treat them. Please don't get depressed and put on your fighting spirit. We are all here to support you and glad you are going for a second opinion. You're gonna beat it this time too!

Take care,
Eileen
Posted By: Kris Re: Area of concern - 08-29-2007 04:06 PM
Minnie-
As Danny Boy would have said, "This is a bastard of a disease" My heart goes out to you and know that there are many sending you strength right now!!! Take it one day at a time. Love, Kris
Posted By: Nelie Re: Area of concern - 08-29-2007 04:57 PM
Minnie, I tried to send you a private message but your box is full. I'm sure you are overwhemmed with messages right now but if you have time to empty some old messages, let me know.

I think people who are diagnosed with recurrences should get more space for private messages than the rest of us!

Nelie
Posted By: emmylou1951 Re: Area of concern - 08-29-2007 07:22 PM
Minnie: You have helped Buzz and me IMMENSELY since his diagnosis! Because you and he share the same diagnosis, I have read each and every post you've written and have gleaned much significant information.

Because of this, your situation is of special interest. You are such an inspiration to all of us! You can beat this...I know in my heart you can.

As soon as I read your post, I stopped to say a prayer, and will continue to pray for you until you are well again.

God bless you! Lois & Buzz
Posted By: Dr. Mike Re: Area of concern - 08-29-2007 07:49 PM
Minnie,
I'm saying all my best Irish prayers for you as we speak. I'm sorry to hear about your recent diagnosis.

If I can be of any assistance just ask or e-mail me.
I'll be checking on you here frequently.
Stay strong!!

Mike
Posted By: wilckdds Re: Area of concern - 08-29-2007 08:28 PM
Minnie,

I am so sorry to hear your news, but I have no doubt that you will win this battle, too. I think that you are wise to get that second opinion. Even get a third. You know so much more than before and that knowledge will help you a great deal.

It is so typical of you to feel sorry for your husband. You have a great family and their support and love and the love of everyone on this board, will go a long way as you fight and beat this horrible disease in round two.

Jerry
Posted By: Carol L Re: Area of concern - 08-29-2007 09:10 PM
My Dear Minnie, I haven't had a computer for weeks, just read about all of this happening in your life....you know you have my prayers and we are not that far from one another,distance wise. I can help, if needed......God Bless you and your family, Love, Carol
Posted By: JAM Re: Area of concern - 08-29-2007 09:38 PM
Damnit-Minnie,!! Amy.
Posted By: minniea Re: Area of concern - 08-29-2007 09:54 PM
Today was a little tougher than yesterday, it's really sinking in I think. My daughter talked with Brian at length and of course our leader made us all feel much better.

We have decided to get second and third opinions from John Hopkins and Dana Farber. Hopkins is about 4 hours from us and I have a brother that lives in Boston, so both places are good locations. I'm also considering Sloan-Kettering. I just know that I want treatment started NOW, I want this out of my body and I want to get on my road to recovery. I have so many things planned for this fall and winter, I'll be damned if this cancer will get in my way smile !

To all of you that have become part of my heart, who have stood by me each time I've been scared or anxious..........pray for me but especially pray for my family. To put it bluntly, I have the easy job in all of this, the most I will have to suffer is dying. My husband and children will have to carry on without me and we are one of those families where mom is the foundation. I get sick to my stomach when I think of my 16 year old crying alone because her mother has died. Morbid I know, but these thoughts need to be dealt with.

I will keep everyone posted, I go for the PET scan tomorrow, they changed it from Friday, and we're praying for it to be clean.

Love
Minnie
Posted By: JAM Re: Area of concern - 08-29-2007 10:28 PM
There are a bunch of us praying with you
Posted By: Donnarose Re: Area of concern - 08-30-2007 12:24 AM
Minnie,
I have placed you and your family on our prayer tree. I know of at least 30 people in my immediate area who are going to start praying for you as soon as they receive my msgs and then will call their "limbs of the tree"....and so forth.
God Bless and try to get some rest. Try to think positively, it will bring you more peace.
Love,
Donna
Posted By: August Re: Area of concern - 08-30-2007 12:25 AM
Minnie, can you feel us all joined in prayer for you?? I hope so, because there is power in the prayers of others for someone in need. Keep talking out loud. That is going to be good for you. And know that we will all be waiting for the report of your scan. Get those other opinions, and then hit it with all you've got!!
Posted By: minniea Re: Area of concern - 08-30-2007 12:55 AM
I try, out of respect for others, to keep my religious tones out of my postings.............but not this time! I am deeply religious, my children attend a private Christian school. I have put my problems in Gods hands but he also understands that I will be using every single bit of medical warfare I can muster up. I need to stay here for the time being.

I DO feel the prayers, the good vibes, the positive aura. My mom coming today did me good, everyone wants mom when they're sick.

I'm eating nonstop although it's tough because my stomach has shrunk so much. But my older daughters have ordered me to gain 15 pounds in 10 days and they are like my wardens! I watched them all today, placing themselves in the needed role, and saw that my house can run just fine without me if it ever comes to that. That right there took away a good portion of my stress.

Love to all of you!
Minnie
Posted By: Carol L Re: Area of concern - 08-30-2007 08:09 AM
Minnie, you know I will put you and your family on my Church's prayer list, and there are some major prayer warriors in my church.....I am praying the scan comes out clean.....If you end up at Hopkins and need me, I am a stones throw away......Love, Carol
Posted By: helen.c Re: Area of concern - 08-30-2007 05:54 PM
Great Going Lady
Well it seems my e-mail was defunct before I sent it you are well ahead in your planning. I hope they tell you the results of the PET scan tomorrow and I pray for a good result.
Sunshine.. love and hugs
Helen
Posted By: brenfran25 Re: Area of concern - 08-30-2007 07:00 PM
Minnie---when my mum was dying, she was terrified that dad--disabled and in wheelchair would NEVER be able to cope on his own. She was SO worried about him, she was his carer

He was amazing--got funeral all arranged and later began his 'own life'
He adapted his wheelchair to make shelf he could put food/cups of tea on, he used his mobility scooter to get to Supermarket and buy his own favourite stuff, he loved and appreciated his 'morning carer' who took care of his hygiene/dressing needs, he could use the washing machine! And he did this for 3 years from age 82--85! I only had to 'care' for 5 days out of each week til the last 6 months--he was amazing and mum must have been sitting playing her harp, scratching her head, cursing a bit that he could do it NOW, but still really proud of him!

So your family will cope just fine whilst you're in treatment and will probably be glad and proud to prove they can!

So save your strength for the treatment and healing Minnie--they love and value you and they---and all us---want you to take your time for YOU right now. love and hugs, Brenda xx

Helen, Tuesday was also YOUR big day and you're very quiet????????
Brenda x
Posted By: linroth Re: Area of concern - 08-30-2007 07:45 PM
Minnie, Haven't been on for quite sometime, and the first post I've read is yours. My prayers are with you. I also place my trust in the Lord , and I feel he gives the dr.s the knowledge and guidance to help us with treatments. Keep trusting in him, and get as many medical opinions that you need. I pray that he gives you the strength to get through this. You are going through exactly what all of us fear each day in our lives. I hope you find comfort in knowing we are all here for you. Praying for strength for your family also. Please take care of yourself. Linda
Posted By: Anne-Marie Re: Area of concern - 08-30-2007 07:56 PM
Minnie - There is power in the prayers and thoughts and positive visualization of so many people. I join mine to theirs in expecting a positive outcome for you. You are strong and have a great family supporting you. Take time for you, and take time to enjoy all the special moments as you gear up for the fight! Love and prayers and positive vibes are going your way.
Posted By: sharlee Re: Area of concern - 08-31-2007 01:08 AM
Minnie,

I am soo soo soooo sorry ..ANd I am sorry i didnt post sooner. I sit here and Cry for you , But I know you are a strong woman with a positive attitude ..and that has to count for somthing.. I have been soo busy with the fair that I hadnt checked..PLease know that you are in my hear and thoughts and prayers ..And tomorrow at the fair ..my efforts will be focused around you ...Because NO ONE deserves this a 1st time let alone a 2nd.

You have alwyas been there me as well as many others. I am here for you now and always .

With love and prayers
Shar
Posted By: minniea Re: Area of concern - 09-01-2007 03:20 AM
You all are like a great big pick me up pill. I get excited to get on here so I can pick up the positive vibrations I get from each and everyone of you.

I am finally getting my wonderful, strong husband to admit his fears and to talk to me about it. He keeps telling me that I'm not his wife, that I'm his LIFE. I told him that I needed him to have the same positive, fighting attitude as I have. I told him that his way of dealing with it at this point was making it tougher on me. He apologized and there was an immediate change in him. He never ceases to amaze me with his ability to do just the right things when they're neded. He got on the phone and now we have approx. 40 people coming for a "Goodbye to Cancer" party on Sunday at our house. He said we are going to officially escort it out of our lives, lol. He is having it catered, all that good stuff. I'm so proud of him.

My girls are doign fantastic. As usual, they each have placed themselves in the needed role and they go about their lives. They have always worked so well together so that's a blessing.

My father, who I haven't seen in 12 years or so, is coming on Wednesday to stay for a couple weeks. Funny how something like this makes your anger at others evaporate.

It's 3:19am, I still cannot sleep but am going to go and try again. I have a Football game tomorrow, season opener. I should be a complete zombie for it!!

LOve to all,
Minnie
Posted By: Lisa S.D. Re: Area of concern - 09-01-2007 10:48 AM
Hi Minnie,

I'm sorry I haven't written. Your situation instantly took me back to memories of a year ago with Aunt Ro. I got stuck in an emotional whirlpool for a few days. You can do this though. You are smart and you are strong and driven, and I believe with all my heart that you can beat this thing. I will pray for you every day. You're going to do this. I KNOW you can do this.

Hugs,
Lisa
Posted By: Lostpassword Re: Area of concern - 09-01-2007 11:34 AM
Minnie -
We are hoping that party on Sunday does indeed escort cancer right out of your life...again. I too firmly believe in God's healing power in our lives. Looking forward to the time you can write in your "signature", cancer survivor TWICE.
Warmly, JaneP
Posted By: DanielleO Re: Area of concern - 09-01-2007 12:57 PM
Minnie,

Sending you huge hugs with tears rolling down my cheeks. I haven't been on the board for a while and I can't stop my tears. You are so wonderful and compassionate and you were there for my mom when she really needed you. I just know everything is going to be ok. You are far to valuable to all those that need you.
Keeley and I will be saying special prayers for you and as always if we can do anything at all for you please do not hesitate to ask. We are here for you!!!!!

Love & Hugs,
Dani
Posted By: sharlee Re: Area of concern - 09-02-2007 10:37 PM
Minnie ..

I hope your party was a GREAT ONE !! I too sit here is a whirlwind of emotions after reading the board tonight...So hard..I sit here an tears just flow ..YOu all have become my family and it is hard to hear all that is going on!!!

But in the same sense ..it makes me wanna go back to the fair tomorrow to educate more .... ( i was getting sick of the fair LOL.. and SICK )

Your attitude is amazing and I am soo soo happy that your family is so supportive !!!

HUGS to you and yours !
Shar
Posted By: brenfran25 Re: Area of concern - 09-03-2007 11:59 AM
A party sounds like a great idea Minnie---how did it all go???

Brenda
Posted By: minniea Re: Area of concern - 09-04-2007 02:25 AM
The cookout went very well, although watching everyone else eat kind of sucked! Having my brother here is great, he has such a calming affect on me and my girls just adore him. He's like the guy that men and women all love.

I have started a Carepage to keep everyone updated for when I'm in the hospital and can't post here. My daughters will post here and on the carepage. The care page is www.carepages.com and the name of my page is minnieandfamily.

I feel pretty good tonight, can't sleep as usual but might break down and take the anti-anxiety pill that puts me in zombie mode for about 12 hours!

Love to all,
Minnie
Posted By: Carol L Re: Area of concern - 09-04-2007 09:27 AM
Minnie, thank you for sharing your carepage with us....I have already signed onto it....I am thinking of you Sweetie.....let me know how your visit goes tomorrow and when you would like to meet up....Love, Carol
Posted By: mhupe Re: Area of concern - 09-04-2007 10:35 AM
Wow, Minnie,

I took a look at the photos on your Care Page, what a beautiful and large family you have. With a support team like that, I imagine you will sail through this.

How funny that your girls are having girls. On a much smaller scale, my family is the same way. I only have sisters and then when they had children, they were girls and so was mine.

I decided to break the girl cycle by adopting a 3 year old boy 9 years ago. When I told one of my sisters, she responded with..."A boy? we don't know anything about boys!" And, everyday I have to admit she is right. Boys are different...in a lot of ways. He's a load of fun, but wow, has he tested my patience (or lack of) at times.

Good luck! And, thanks for sharing so much with the OCF. I admire you in a multitude of ways. I will be praying for you and your beautiful family.

God Bless,
Posted By: Nelie Re: Area of concern - 09-04-2007 12:16 PM
"cookout went very well, although watching everyone else eat kind of sucked!"

You know how much I can relate to this one! You're in my thoughts today and every day.

Nelie
Posted By: Cathy G Re: Area of concern - 09-04-2007 06:25 PM
Minnie,

I haven't been on here in a couple of weeks, and I was absolutely stunned when I saw this thread. I'm so glad you're getting additional opinions -- it sounds like you're set up well for JH and DF. If you'd like any other contacts while you're in Boston, please send me a PM.

You and your family will certainly be in my prayers.

Cathy
Posted By: Cathy G Re: Area of concern - 09-04-2007 06:26 PM
Posted By: minniea Re: Area of concern - 09-05-2007 01:11 AM
I created a care page to keep everyone updated in case I can't get on the computer for awhile. My oldest daughter will keep the care page updated. It's www.carepages.com and the name of my page is minnieandfamily. I'd love to hear from all of you, I'm learning that reading positive words from the people on this site is priceless and so needed.

Love to all,
Minnie
Posted By: minniea Re: Area of concern - 09-05-2007 10:23 PM
Hello everyone,

My appointment at John Hopkins today was very positive and very optimistic. This facility is amazing, I can't put into words how well run it is and how professional and caring every single person working there is. The doctor spent over a hour talking to me, made me feel like a human rather then just his afternoon appointment. He said the tumor is relatively small and localized and he feels it will be a partial glossectomy rather the the semi glossectomy my other doctor was talking about doing. He felt very strongly that I will get back to 90-95% of my speech and that eating won't be any tougher on me than it is right now. Of course that will all take time and therapy, but just knowing it's there for me is a blessing.
He also feels like he may be able to remove the cancerous area at an angle that saves much of the right side of my tongue. If this can be done, then I would only need a graft to close the defect in my tongue, taken from my thigh. If they end up needing to take more, than I will have the free flap from my wrist. Either way, his plan is just so upbeat and he made us all feel very good. My brother asked him to rate the seriousness of my situation from a 1-5 and he instantly said a 2. That made us all feel good. this isn't a death sentence by any means, and he made sure I knew that.
No surgery date yet but we will have that within the next couple of days.

So, the beginning of my new journey is starting out on a positive note........let's all pray that it stays that way!

When we walked into the waiting room, and I saw the OCF brochure sitting on the tables.......I just knew I was at the right place!

Much love to all,
Minnie
Posted By: wilckdds Re: Area of concern - 09-05-2007 11:05 PM
Minnie,

You have made my day. I have been thinking about you all day and this is such great news.

Jerry
Posted By: Dr. Mike Re: Area of concern - 09-05-2007 11:18 PM
Minnie,

I couldn't have asked for a better end to this day. I've been thinking and praying for you, hoping for some positive news. I'm so happy for you and your family. I'm not certain but, maybe all of our prayers are gettimg through.
I'm impressed and at the same time amazed at your upbeat attitude, we all can learn a thing or two from you. I nver had to question your strength or mettle, you Minnie are the most solid person I've ever had the pleasure of complimenting and you desrve it! You go girl!!

With all the prayer and positive thoughts I have, I am in your corner.

Oh...have a hug.

Mike
Posted By: aussieh Re: Area of concern - 09-05-2007 11:38 PM
Wonderful news Minnie. Sounds like you found the right doctor.
Love from Helen
Posted By: Joanna Re: Area of concern - 09-05-2007 11:58 PM
Ditto, and ditto, Minnie. I am absolutely thrilled at your news!
Posted By: Leslie B Re: Area of concern - 09-06-2007 12:02 AM
That's fabulous news, Minnie. My husband gets checked every few months at Hopkins and I also really like the people there.

-- Leslie
Posted By: Donnarose Re: Area of concern - 09-06-2007 12:32 AM
Dear Minnie,
What great news! I'm so happy for you.
And how cool to see OCF brochures on the tables! You are most definitely in good hands. Your new doctor sounds like my mom's.
God Bless.
Love,
Donna
Posted By: Cookey Re: Area of concern - 09-06-2007 02:37 AM
Good news Minnie congratulations.

liz
Posted By: helen.c Re: Area of concern - 09-06-2007 03:24 AM
So pleased. That is definitely something you can deal with.
Sunshine.. love and hugs
Helen
Posted By: Nelie Re: Area of concern - 09-06-2007 08:25 AM
Great news, Minnie! I was so happy to read this this morning. Between good doctors and all the prayer you have going for you, you're bound to win this battle.

Nelie
Posted By: Carol L Re: Area of concern - 09-06-2007 09:07 AM
Minnie, this is wonderful news! Let me know when you want me there.....Love, Carol
Posted By: linroth Re: Area of concern - 09-06-2007 12:35 PM
Great news! I can just feel the positive vibes coming through your writing. I have been thinking of you and praying for you, and everyone here, everyday. Stay stronge and positive and you'll get through this. Best to you and your family. Linda
Posted By: brenfran25 Re: Area of concern - 09-06-2007 01:45 PM
Good news there then!
Continuing to think of you!

Brenda
Posted By: Eileen Re: Area of concern - 09-06-2007 05:14 PM
That's great news Minnie. I knew you could do this. The one thing we survivors have going for us is we tend to catch it early. Did you ever get the results from your PET scan? Your gonna beat it this time too. You go girl.

Take care,
Eileen
Posted By: Talbill Re: Area of concern - 09-06-2007 08:48 PM
Great news Minnie!! May all your news be this good from now on. smile
Posted By: DanielleO Re: Area of concern - 09-06-2007 09:55 PM
Great news Minnie!
My mom has only 1/4 of her tongue left and she talks & eats and drinks quite well and she had the same surgery as you on her jaw. The tongue surgery was by far easier than the jaw surgery.
Keepin you in our toughts and prayers.

Hugs,
Dani
Posted By: emmylou1951 Re: Area of concern - 09-06-2007 11:25 PM
..and last, but not least, Minnie...here's a BIG HUG from North Carolina....I'm elated!

Still praying for you daily!

Lois & Buzz
Posted By: Uptown Re: Area of concern - 09-07-2007 06:46 PM
Minnie,

You have turned my tears into tears of joy! May He continue to bless you in many ways.

Ed
Posted By: JoAnne1981 Re: Area of concern - 09-07-2007 09:56 PM
Hi Minnie, That's great. Jack is in a clinical trial in Hopkins and we feel the same way about it. It's an amazing facility. You just get a sense that they know what they're doing and that you're in good hands when you go there. The cafeteria isn't too bad either and Jack likes the smoothies in the coffee cafe.

I'm so glad to hear the doctor was confident and hope you will continue to maintain your wonderful sense of humor and strength. We're all thinking about you and wishing you well. I think Jack goes back to Hopkins in early Nov, who knows maybe we'll get to meet you there.
Best Regards JoAnne
Posted By: marliz Re: Area of concern - 09-07-2007 11:10 PM
Great news Minniea that your getting treatment at JH. Sounds all good, with your determinaion, great family support and all of us routing for you, your bound to come out on top of this, one more time.

Best wishes to all
Posted By: minniea Re: Area of concern - 09-08-2007 03:15 AM
I'm so lucky to have all of you. I have tons of support here in Va. Beach between the school and my church..........but it's this board that I come to each morning and each night because I know it's people that truly understand my feelings. Thank you for that.
Love,
Minnie
Posted By: lenny polizzi Re: Area of concern - 09-08-2007 08:08 AM
My Dearest Minnie,
Once again your courage and optimism are just awesome. There are so many wonderful people here on this site and it is just immpossible to connect with all of them ,I am so lucky that you are one of us whom I feel close to. I am convinced that everything will end up in a good place for you and that you will be able to handle any challange put forth. Minnie I love your attitude, I love approach and I love your courageThis is why you are on my pedastal.
Lenny
Posted By: ChuckF Re: Area of concern - 09-08-2007 03:10 PM
Minnea,
I haven't been on the board for a couple of weeks, and was just stunned to read the news. I am so glad to hear of the good prognosis. You and your family have been and continue to be an inspiration for many on this website. You will be in my prayers as you go forward.

Chuck
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