biopsy Tuesday but everyone is expecting surgery this time. On Friday, a team will decide which surgery to perform. I'm glad they told him the types of surgery they will probably do so he's prepared.

He's been unemployed since late November so it looks like it will be for awhile longer as he will be in hospital up to a week most likely and not sure how long recovery will be.

thankful we have health insurance but are still paying quite a bit for living expenses such as a house, etc. Life is going to get rougher for at least a while. He has done little to get a job but it seems now it might get harder to get a job if he doesn't bounce back from this and look for one. Can't really talk about it as he's worried people will get word of this and won't hire him....I'm not sure anyone is really interested in him anyway. Gets old walking around with all this stress and few places to unload it.

Dear Connie,

I’m so sorry you are faced with this second round,of treatments. Oral cancer is really the disease that keeps on giving, as some on the forum sometimes say.

Please let us know how things pan out and, of course, if you need support or just to vent, we are here.

thank you Gloria. I wanted to keep things quiet the first round as I didn't want to be cornered every where I walked in to ask how he was doing. People have told me I was wise to do this. I had a private fb group to update about 25 people. He wanted everyone to know the first time around. This time, I have to keep quiet as he thinks he won't be able to get a job which we desperately need him to do after 3 months of just laying in bed doing nothing...not sick, lazy, feeling sorry for himself.

So I have told 4 people but some days, I wish people could know why I'm carrying a heavy load and why it's hard for me to make plans.

I will update as we go along. He is already prepared that there will be surgery, we just don't know which one. Tuesday, biopsy. The drive is much farther this time around.

Hi Connie!

Gosh Im sorry to read this!!! Ive always kept up with all of your posts and was hoping your recent posts were a false alarm. Please let us know how the doctors appointment goes and what options are presented (probably just the surgery). You've had such a rough road with your stubborn patient doing his own thing regardless of what he's been advised to do. Definitely NOT an easy patient!

If your husband is smoking and/or drinking again, its time for him to get serious and make up his mind to quit, permanently! This info should be shared with his medical team. He should also consider talking openly and honestly with his doc about whats going on that hes staying in bed for 3 months.

Heres a link from the main OCF site for financial help. I dont know what is available in your area or if your husband meets the requirements but its worth a look. The American Cancer Society helped me with covering prescriptions co-pays and picked up some of my transportation costs too. Back then (2007-2009) they gave up to $300 worth of services which was a big help at the time. Hopefully theres options that will help make this easier.

Please keep us posted!!! Best wishes with everything!!!!

Main OCF Site, Financial Assistance

today was the biopsy.

let's just say the doctor came to talk to me afterward dumbfounded. She said she biopsied him like crazy, even brought in a far more experienced surgeon and they could not see any cancer and most of the biopsies were read while he was still under: no cancer so far. They were in shock. He did not appear to have cancer visually but so far, no cancer even with the biopsy. The team is meeting Friday to talk more about where to go from here. The area that is suspicious is 3 cm and he is in a lot of pain.

Doc said well, it's good and it's bad because we have no idea what is going on. They said this is so unusual and unexpected.

I reminded him today to stop drinking and he rolled his eyes so we will see. I also said I was going to kick his butt to a job if he does not have cancer. It's time to go back to work or even look for a job.

I am going to look at the link Christine. No matter what, we are going months without income and cannot do that much longer.

I will update after Friday's pow wow and all the biopsies are in. They think it's inflammation but don't know what's causing it and said it's possible there is a tiny bit of cancer down deep and his body is reacting to it but otherwise they have no idea at this point.

crazy. he didn't even believe me when I told him what the doc said. We were all dumbfounded honestly considering how sick he has been and how much pain he is in.

to be continued..........

Connie, it never is a straight path forward, is it? Hopefully it’s not cancer but something benign. Wishing you all the luck in the world!

Pain can be from an inflammation or even scar tissue pressing on nerves. Being in pain actually is a positive thing as it means that area is functioning with bloodflow. Theres a great many OC patients/survivors who live in considerable pain every single day and have for years with no end in sight for it to improve. Im one of them with surprisingly my shoulder usually being the worst of my pain. Maybe he should see a pain management specialist who has other ideas of things to try that will help alleviate some of his pain??? It sure cant hurt.

Smoking and/or drinking will eventually catch up to him. Its a fact!!! Its only a matter of time so he can continue being in denial, burying his head in the sand or he can get out of bed and do something to have a better live. Working is a great way to help him feel more positive. A new job or career change is always difficult but if you dont try you dont know. Everybody needs a reason to get up in the morning... I know this first hand after my 3rd round of OC left me a different person that couldnt do my job anymore. I lost my purpose in life when I went thru the mandibulectomy and suffered a . very long, hared recovery. Luckily I have some very special people in my life watching out for me.... Brian (OCFs founder) saw something in me and gave me what I didnt know I needed... a new reason to get up in the morning. Your husband needs to get to that point where h sees what he needs to take action to help himself. Thats something Ive noticed ... unfortunately, your husband dislikes change and would rather stay in bed than to initiate changes. Sure its easier to just pull those covers over your head and become invisible to everyone. Unfortunately this is something he must own up to and do on his own... its his choice. His stubbornness isnt doing anything positive for helping his situation.

Scans pick up slices of images so it definitely is possible to miss something. Im pretty sure anything under 2cm gets picked up on scans. Thats something to ask the doc.

Hang in there!!! Things gotta turn around soon but its now a matter of its up to your stubborn husband to see the problem and do whats necessary to fix it. If not for you (I already know you are rolling your eyes reading that!!!), children, pets, etc... he needs to first do it for himself because he wants to.

((((HUGS!!!!!))))

thanks Christine! this has been quite trying for me for sure!

the doctor just called and now wants to do an MRI because she couldn't reach an area that she wanted to biopsy. She also suggested he could get a second opinion from Mayo clinic which a lot of people do around here as it's only 4 hours north.

He's stressed out beyond measure again. He is supposed to have 2 interviews next week thank goodness as he needs a goal of some sort in his life, as you say, a reason to get out of bed.

He asked what I thought and I said, hey get the MRI done, get all the information you can and then I will decide how i feel about it. We need all the pieces of the puzzle first.

She did suggest Keytruda or immunotherapy and he said, that's just kicking the bucket down the road to delay dying. I know nothing about immunotherapy, I just said get all the info you can and hey, no one has regretting going to Mayo for a second opinion from my experience. They tend to be ahead of the game when it comes to difficult situations.

Not sure what i would do if I didn't have this board to listen and learn from honestly. This cancer journey is a lonely road to travel.

I will say he is not smoking but he was drinking very very heavily the past few months after losing his job. They told him yesterday to not be drinking. I looked at him and said, see...no more drinking and of course he rolled his head at me. I warned him twice now.

to be continued......

Way back, my husband was in a phase 1 trial of immunotherapy. We met a number of other patents with different kids of cancer who were tang part in the trials. I don’t think they were all on the same medication. One woman told me that she had been told that she only had weeks to live but the immunotherapy actually made her feel better.

I believe immunotherapy is now used in conjunction with other treatments for various cancers. Our MO who is in charge of drug development at the hospital which is the largest cancer center in Canada believes that it’s the future of cancer treatment. So, it’s not necessarily prolonging the inevitable. Some people do benefit from it and the scientists and researchers have great hopes in it. With so many new drugs and treatments coming up, things do look quite positive.

and they still haven't proven that he has cancer again. they are thinking out loud because they just don't know.

he's just beat down right now over many things. i'm just sitting back and waiting to see what the MRI says.

thanks for the info