I dunno if I have any tears left. I went to the new ENT today .. And he thinks the LUmp is def the jaw. I am having another fine slice ct on mon and a pet scan on tues. He says he is very concerned and that people in my case who have no risk factors ...seem to usually have a more aggressive form of the cancer.
He told me straight out that he was nervous and wanted to get to the bottom of this ASAP, and that I need to be followed very very extremely closley and he would have reccomeneded the Rad Tx. He said being seen in May then not again till July was unexceptable. He seems as though he def wants to biopsy this as well , just wants to run the test 1st and I was told I could even lose a part of the jaw during the biopsy ..
So the tears start to flow. Of course I am devasted and overwhelemed , called hubby to tell him as he wasnt with me . get Home he isnt home ..mind you I was an hour away and it took me alteast an hour and 1/2 cus of traffic. He was at neighbors havin a few..So glad he could be there for me when I got home. Dr feels as though good possibilty it is back and I good poss I may lose piece of my jaw , but his friends are more important.
Of course i was upset and didnt bite my tongue I complained that I really coulda used him here when I got home. And not after drinking and why does he even have to ,,it seems like everyday . So we arggue..I hear about how I am nothing , I dont work, 35 years old and havent made anyhting of myself, and going to DIE at 35 as a nothing and a nobody . depending on others ( meaning him ) to support me and he cant wait till it is over. If I dont like his drinking I can get the F*** out . ANd he cant wait till the cancer ends it all .
So at this point I am a mess ..just so you all know..I cant do it. I cant fight with him , my teenage daughter who feeds on this,,to get her own way and the cancer..I am strong but enough is enough.I cant mentally do it all..I was a basket case tonight. They are talking rad and all ..How the hell am I going to do all of this ?
I know take a breathe and see what the test say ..but I am just spent.
Dear Sharlee,
I have been reading your posts and am so worried for you. We are a similar age and I have had similar treatment, although in my case, rad and chemo as well, as the cancer was bigger and in the neck also.
I am so very sorry that after everything you have gone through, you are facing more distress and fear. It may be that this will turn out to be much less worrying than it seems, but I know only too well, that saying it doesn't make you feel it.
I don't know you or your family, but maybe it was the alcohol and fear talking in your husband's case? It's cold comfort when you're on the receiving end I know, but I hope that by the time you read this, things have improved. My own husband and daughter have dealt with all of this is a variety of ways over the last 6 months, sometimes painful for me.
So many people will be thinking of you right now and sending you love, every good wish, hope and positive energy, me included. I wish you all that you wish yourself. You are so right about taking a breath and then keep on keeping on.
I am going away today on holiday, but I will be thinking of you and hope to hear good news when I visit the board in a couple of weeks.
With my very best wishes,
Georgia
Dear Sharlee
We are all here for you.
I know you are frightened and feel very alone right now. But you know that it isn't cancer until they say it is.
I will find an Al-anon meeting place near you. This will be a starting point.
Your husband is a full blown alcoholic. The mean and abusive statements he made to you are unfounded. You are definitely being abused mentally and with five children in the house this is a totally unacceptable living condition.
Your husband needs help. But until he admits that fact you are beating a dead horse.
You need to talk to your family and his family and plan an intervention. It will only get worse until Joe gets the help he desperately needs.
Been there, done that! Petey
Sharlee, maybe you must try a different approach. There are counselling staff at your hospital who are willing and experienced to help you. You just tell them your story and they will help you. You are not alone here. You can meet people in the hospital who are in the same boat as you. Get their phone number or email address. We are here for you at all times day or night. Chin up, pull yourself together, stand tall and change your thinking to saving your sanity. If needed go to your doctor and get medication to calm you. I am not a big fan of medication but when needed is needed. Keep us posted. Carol Ann..ps If it was me I think I would play low key and work on a PLAN to get myself better. After that..deal with the other things as they may. After you get better. Take care now.
Hi Sharlee,
Well, I have to say that my gut reaction is to ask you for your address so I can drive there and KICK your husbands ass. WITH THAT SAID, we all know that everyone reacts differently to how this disease impacts our lives but his reaction is over the top and particularly cruel. Fear can make us say and do some hurtful things but he is over that line, IMO. You need to find a support system outside of your family it seems and your hospital can probably help you with that. Call the social service department and ask for help, you're going to need it. In your shoes, I would ask my husband if he can handle the emotional rollercoaster of you POSSIBLY having to deal with further treatment. If he can't, ask him to dissapear for awhile. Do you have family members that could come and stay with you?
Wish I could help.
Minnie
Hi Sharlee -
I liked what Minnie had to say. Please know that no one understands, sympathizes, and supports you more then this group of OCF members. Kinda picture us as all arm interlocked encircling you and holding you up while you get thru this particularly hurtful situation. Hope you can feel the empathy and allow that energy to lift you thru whatever comes next. Then in the future, you will be offering your vital and "been there" advice and experience to newcomers to OCF. Please keep writing - it's also cathartic. Warmly, JaneP
Dear Sharlee,oh how familiar that all sounds and how many times over the the last 15 years have i participated in similar scenarios, and if you know he cant be emotionally supportive dont ask him to be, because the you will feel endlesly let down,and you have enough to cope with.Find a buddy who you can call or e-mail,get a counsellor or a cancer nurse let him see he isnt the be all and end all.But this is about you not him and any women of 35 with 5 children certainly has not done nothing with their life,so just stand up to him because he is nothing but a bully and bullies are notorious cowards.
Well written ladies...I especially like the circle of members. Without a doubt, this is exactly what we are all doing...Bravo...As stated, find a buddy, a person man or woman that you can talk to...Hang in there. Carol Ann.
I cant tell you all how much you mean to me !! your words can ease my mind and my heart ,,at times maybe only a little ..but ALWAYS . Things were better today. I know it isnt cancer until they say so,..but by the Dr reaction , i know it is a strong possibily and the fact of even havin anotherr biopsy is just overwhelming enough as well as more test ,,I have no Veins left ,it is painful to even go through all that .
Hubby did not apologize ( at least not in the traditional way ..actauly sayin sorry) He isnt so good at that . He did hoever try to go out of his way today to do all the "family things" I nag for. My daughter had to march in a parade today in Saratoga , for those of you who dont know the area ..it is a beautifl town ..with parks and shops all over and COLD STONE ICE CREAM ..hahaha Well as of last night ..I wasnt going to go ...I didnt want to be with the two people who were hurting me the most
Yet i was having a hard time with that as well as that is my daughter and I love her so much , but she needs to understand( teenager or not) That she cant do this to me right now, and unfortunaltley for her ..the world her cant revolve around her right now ( not that is ever really can with 5 of em )
So this Am Joe woke me and was like are you going with us..I was like I dont know .. he asked when I would know and i replied .If I am ready when you leave I will go. My two older boys 10-13 had no desire to go to this parade. But the little two .Gabbie 8 and Alex 6 ..well they were all for it , so they kept talking to me ..MOMMY remeber last year...... and i hoe this year...DOnt you like the parade mommy ... I like the fire truck and on and on .. SO i made the decison to go and as Joe was taking kayla to the school to catch the bus i got up and got ready and then we all went .
He then even stopped at Dunkin donuts to get me my iced coffee that I love.. I however was not beng forgiving at that time and wore my MP3 player the whole way there ( baout 45 min or more) then we got there and parked ..he bought the kids some hats and balloons and the got flags... We watched the parade ..he was talkative ( for him ) and was askin questions on what the Dr said and If i had talked to any of you about it and all. Then he took us to lunch ..My choice !!! although i didnt care where. We went to the park and the little ones rode the carousel. and then we went and got ice cream . and came home ...i was exhausted ,,we had walked alllllll over ..he was even willing to go into all the shops but i was tired. so we came home
I took a nap and he mowed the lawn and then had kids come wake me and ask me if I wanted to go to the beach for a while ( him going to the beach is like trying to pull teeth on somone who wont open their mouth.. lots and lots of coaxing !) We live about 5 min off the lake .SO we took kids and went to the beach and he told them maybe we will go tomorrow after his game.
So while maybe it was the fear, anger and alchol..still hard to handle ..but maybe just maybe he realized how important family things are..fuun family things..It cost us nothing for the beach ..his big thing is MONEY this and MONEy that .
I still wish he could have said sorry ... and maybe gave me a hug ,,although ..i wouldnt really even get close enough today . But I guess in his way this was his sorry . And my best friend of 20 + years said the same thing. AS wrong as he was ..he feels guilty ..yet he cant tell you that and he is trying to make up for it. She live 3 miles from me and that is where I went last night. She told me then Shar I am behind you and beside you always !!And if you have to have RAd and I need to rearrange my shcedule at work to do whatever you need I will.
I do have some GREAT friends and family and inlaws, they all want to help..right now not much they can do...But I want and need the supprot of my husband and mom ( she is another story hahaha),Anyhow , I can do this , I have my moments it seems hopless and like I dont want to ..But I can ..And you all really really are such a HUGE part of this for me ..honestly I love all of you as my true "friends" even though I havent laid eyes on you .AGAIN thanks for being there during the BAD times ..I cant wait To share the GOOD ones with you !! So now my Novel ( or what feels like one ) is done ..Gonna go rest ..been soooo tired and yuck latley ...THANKS to EVERY ONE OF YOU !!
Shar
Sharlee - I am so glad that things were a little better for you, today. And how great that your friend was there to support you! You really do need to take care of yourself and you cannot do everything or worry about everything at once. I was married for 20 years to an abusive alcoholic and it took me way too long to realize it. But if you think alcohol could be the problem (there are ways like checklists to be able to decide) - then, as Petey says, you should get yourself to an Al-Anon meeting. Living with an alcoholic is a crazy-maker. After attending my first Al-Anon meeting, I left there feeling like a tremendous weight had been lifted off my shoulders - a weight I hadn't even realized was there. You have gotten such good advice and thoughts above. Just remember we are all thinking about you and hoping everything goes well. If you need to talk more about Al-Anon or anything else, please PM me.
Sharlee,
My ex husband was (and is) an alcoholic and I went through some tough times with my current husband when I was fighting two kinds of cancer at once because the cancer thing just freaked him out so I have been sort of near the shoes you are in though not exactly in them.
And although,like Minnie, I'd like to whop your husband's ass right now for what he said to you, I think the most sane advice I can give you is to get counseling help for yourself RIGHT NOW. As others have suggested, ask to speak to the social worker at your hospital, they will know of what's available. I'm also a veteran of al-anon and I agree with others who have suggested them although quite honestly I don't think al-anon will be enough to help you through the stress of fighting cancer right now. Still, you need all the support you can get and it can't hurt to check them out.
Honestly, it's hard for me to tell from what you've written if your husband really is an alcoholic or is just abusing alcohol because of the stress of the cancer stuff you are going through. If there were cracks in your marriage before, this disease can turn them into fault lines. That's what happened for me--and the cracks were ones I didn't even know were there before I got cancer. Fortunately, my husband and I went to couples counseling and our marriage seems to be back on track. But believe me, it was touch and go for a while and it happened during a year of cnacer treatment hell for me.
So my other advice is, along with getting help for yourself, if there's any way you can, see about getting some kind of marriage or couples counseling. Actually, maybe you need a family counselor because it sounds like your teenage daughter may need to see how important it is to support you too right now.
Bottom line is, if you do have more cancer (and don't assume you do just yet) and need radiation, even if there are other issues, they are just going to have to wait at least a little while. And people need to understand that. If your family, especially your husband, can not understand that, maybe you need to move somewhere (in with sibling or a friend?) where you will be cared for or at least not unduly stressed when you are going through treatment--with the promise that you will come back to try to work out your family issues as soon as you have the energy.
Finally do remember that we care about you here and will try to offer whatever cyber-support we can.
Oh, and thanks for putting more line breaks in your writing. It really helps someone like me with old eyes in terms of being able to follow what you're saying....
Nelie
Sharlee---I agree with Nelie totally--you need every ounce of help you can get for yourself right now! I cannot imagine how you can have fought this disease AND run a house and 5 kids--that's one Hell of an achievement
I also agree with the comment about writing being therapeutic--I went out and bought myself a pad, file and some pretty-coloured gel pens, and I write down each day what I'm feeling.
Something I've learned from this site is how caring everyone is and also that the 'one thing at a time' philosophy is the only way to get through--and that's before I even start treatments!
Am thinking of you Sahrlee and come and vent anytime!
Brenda
Sharlee,
I was thinking about you earlier today and just wanted to add one piece of advice which is do not try to argue about anything with your husband while he is drinking. Whether or not he's an alcoholic or just abusing alcohol because he's stressed, alcohol doesn't make for positive conversations during tense times.
When I was splitting up with my ex (over a decade ago now), a counselor I saw used to tell me there are only five words you should use in conversation with an active alcoholic. They are:
"yeah." "no." "really?" "oh." and "whatever".
I still find this list of words a good list to have when I'm dealing with someone who's really ranting about something. Try them out next time your husband acts like a jerk--wait to have the meaningful conversation about how you're feelibg until he's in a place where he might be able to hear what you're saying!
Nelie
Rob and i always had a fairly confrontational relationship,and Rob always used to save his best barbs for when he had a few drinks,it was almost like he needed the alcohol to give him the neccessary degree of venom to hurt the most.
From the day he was diagnosed with cancer,the confrontations ceased and a much more subtle method of verbal abuse replaced it.I recognised this shift quite early on, and decided there and then that i wouldnt under any circumstances give him the satisfaction of
a) seeing how hurt and upset i was,
b) Not retaliating.
I hoped that by doing this he would give it up as a bad job,and so an uneasy truce reigned, and i tried to put all my efforts into showing him i loved him and would do anything he needed to help him fight his way back to full health.I used all the words that Nelie quoted but mostly i kept my silence and just removed myself from the situation.This worked because i refused to fuel the fire, and the flames quickly died down. So Shar my advice for what it is worth is dont flare up when he doesnt behave in the way you want him too,dont give him any room to instigate a fight,and he will soon get bored when he doesnt get a reaction.It will also make him look at you more closely and try and work out what is going on.
Sharlee,
You have been so supportive in all your posts to me about my mom. As with many of those that care enough to support total strangers on this site, you have shown a strong commitment to both resilience and sensitivity. I was deeply saddened by your news.
Perhaps the ENT doc is just being overly protective in his aggressive preliminary diagnosis. I pray he is wrong.
Your husband sounds like a shallow, angry boy who is in denial. Don
Sharlee,
My thoughts and prayers are with you today.
Shar-
I know you are waiting for your PET results from yesterday and I am thinking of you. Let us know what you find out. We'll be praying for good results.
Oh boy, are we SO all in this together!
Although last week I was given diagnosis of 'lung, spread to nodes, liver and jawbone', it's still the jaw problems that are seriously 'presenting'.
Shar---I brought twins up on my own, they're 33 now (next week actually) and I just did 'the best I could'
Just concentrate on you, remeber what a good job you've done so far and don't allow ANYONE to put you down.
You've dealt with so much so far, and will continue to do so--however you decide to do it!
Try Yoga breathing--it's the only thing which has got me through tests/needles/knives/tunnels so far---and will hopefully get me thro my 2 docs appointments for a possible 'plan' tomorrow.
We're here for you Shar
Brenda x
Talked to my new Dr today.. He doset have results yet he said , he also stated he dosent like to give results over phone..SO I will know nothing until Fri,, I hate the wait and of course I feel the thing on my face is growing daily ( i know it really isnt ) but def more tender..Thanks to all of you who are helping me through this !! I couldnt do this with out you . Things here are OK I guess .. Been so busy this week with Drs and scans ,LOL No time for anything else ! ANd joe has worked both jobs so i havent seen him much , we did however go to school today for Alex's (6) field day ..so that was nice . well gonna try to sleep !! Talk to you all soon !
Don't let that freak you out. My wifes doctor wouldn't give her test results over the phone and when she went in it wasn't anything.
Shar--thinking of you for your results tomorrow.
Whatever they are, take a deep breath and find some time for YOU!
Brenda
Sharlee, Will someone close to you be coming with you when you see the doc tomorrow? Do you have a list of questions for him if it is the worst case and he thinks it is cancer? It's a good idea to bring a friend both for moral support and to help with the questions if you are just feeling overwhelmed. And they can celebrate with you if the news is good!
Nelie
Sharlee - just wanted to let you know I am thinking about you and sending as many positive thoughts your way as I can. I hope and pray that you get good news tomorrow....
Ginny
I am scared ..but I can do this..I can face tomorrow no matter what it brings as I know I have all of you with me. I am printing your messages and keeping them in my pocket !! I can do anything I have to because of all of you and my children. Dosent make it any better , but bearable. who knows maybe it will be Nothing.50-50 chance right !
Sharlee,
I am wishing positive results for you. You will take each day at a time. You will get thru this.
Honestly- if you can live with an emotionally abusive alcoholic you can whip this cancer.
Keep your stength for whatever you need to do. Take care of yourself which means be selfish- that is not a dirty word.
Trust me- been divored for many years from the same type of man - have a happy and stress free life and have been married 11 years to the most wonderfull man.
You deserve better.I am here to support you- however I can.
Paula
Paula
Shar: Give us an update! Thoughts and prayers are with you! Lois
Well ..the answer is ..I STILL DONT KNOW !!! UGHHH
Ct was good. Dr didnt have report from Pet scan but he had the Images ( cus I brought them) and he dosent see any real hot spots. Yet Now he said He can feel the mass on the inside of the mouth as well, SO he just doenst know. Wanted dentist to do a panaromaic , thought possible tooth or root was causing this, well they fit me right away and did xray ...Not the problem. Dr is puttin me on an antibiotic and wants to wait 10 days to see me, wants to see if anti biotic will do anything ,
How can there be somehting there , that you can Visisbly see , and Feel and cauisng issues ( numbness and all ) yet dosent show up. I saw Dentist a few weeks ago too and he said it has grown as well. ughhhh I dont get it, After the 10 days I guess we go biopsy ,fun fun fun !!
Sorry I didnt write sooner .. My friend was here and her sis ( my other friend ) was in hospital,,, we waited around and the found out she was having an emergency C section ..so we go to hospital and find out it is her appendix and gall bladder so they are gonna take the baby ......5 weeks early !! ALL went well though ! So I am just getting home and exahusted and overwhelemed ..SO I will think clearly later ..any ideas ? Or questions I should ask?
Sharlee, I don't know what your doc means by "real hot spots" but PETS are sensitive to the point of being oversensitive and if the report,as well as his glance at the images, show no hot spots, that is very good news. The fact that nothing shows up on the CT is good news.
You haven't taken antibiotics for this yet, right? If that's so, it does make sense to me, given the CT and PET results, for him to treat this as though it may be some kind of abscess before doing a biopsy. I am hoping for you that that's exactly what it turns out to be since even if you have to have a root canal that's a whole lot better than ahving to have radiation.
Overall, this sounds like hopeful news to me although I know it's frustrating to not have certainty. i'm glad your freind's delivery went OK. That's a lot tp deal with--having a new baby and recovering from surgery removing the appendix and gall bladder. I'm sure she is grateful you were there for support.
Nelie
Shar,
I echo what Nellie said, even though you aren't sure yet, it does sound encouraging.
And the fact that you are going through all of this and probably had a rough day, the fact that you were still supporting your friend really speaks volumes about the type of person you are. You are a wonderful friend, and I am sure that anyone who is lucky enough to be close to you is very grateful.
I am still praying for you.
God Bless,
Amy
Thanks !!! i wouldnt have been anywhere else !! That is a Good and Bad quality of mine hahaha .. The Bad in it is that I dont know how to do for me ..And the good well that is easy to figure out ! It was good for me to be there , it let me focus on some one besides me !! I was scared for her ..god ..you said it nelly Alot to go through being a 1st baby ..
BUt I will tell you ..precious as all possible she is. Strawberry blonde culry hair !! 5lbs 3 oz 18 3/4 long ..Sweet sweet sweet !! Makes me want another one ( LOL Like I need one ) and now wouldnt be the best time to try and i cant anyways ..BUt I talked to my friend today and she and Baby are fine !!! She was so cncerned about me and apologized last night for not askin !! I told her PLease ..dont even and like it mattered or even changed over night !!!
One things about this or any hardship ..makes you know who your freinds ( real ones ) are, I am learning that real fast. One thing I would love to say is ..I would be honored to meet anyone of you ....cus you all seem to have the qualities of a true friend!!
While I have nothing but time to be paranoid about myself...I did have another thought and I would love some input.. I love to "arrange things" and I think it would be neat to arrange a ((HMM not sure what to call it ) Get together ..kinda like the little people convention ( For lack of better words ) where we can go for a weekend or so and have guest speakers and meet each other ...Or even just have activities all weekend or Bbqs..we could find a somewhat central location ..I am more then willing to try and set things up and figure it out and get sponsors ..probably for next year so we have time !! I just need some input...BUt you guys have a special place in my heart and it would mean the world to me to meet you !! Thanks for being there and makin me look at things rationally and let me cry and probably cry with me !
So, have what did they say? How are you holding up? When I first read your email, I wanted to pack up and come take care of you. And then I realized mine came back so I wasnt going anywhere. I really hope your husband is being supportive for you this weekend. Next year at this time, we'll be doing something FUN and this will be a disant, nasty memory. I hope you heard good news. I did my biopsy on Friday and it is still cancer. Getting ready for surgery. Hope you had a better Friday than I did.
I didnt get a biopsy next..I go back in 10 days and then ,,,if it still there ..which I have No DOUBT it will be ..it has been 2 months already and grown as well ..I get to schedule my biopsy !! I would come and take care of you as well of course !!! Hey maybe things will go good enough so I can make a trip..I would come see everyone if I could afford it ! LOL
Shar
Shar, Shar, Shar.....
You know this better than most here....It is not cancer until the biopsy says it is cancer.
10 lashes with a wet noodle for you! You know better than to worry about fears that may not even exist....
You and others have taught me, along with many here, that this fear of the unknown only raises your anxiety and stress levels unjustifiably.
I Have Been Through Some Terrible Times In My Life.
Some Of Which Actually Happened!
Take a deep breath, and know we are all right here with you. Petey
Maybe they're not overly concerned if they're not making you get a biopsy. I had to do mine right away....cuz the knew by looking at it. I also "knew" in my gut. Why can't you ask that they do one sooner? It may calm your nerves.