Hi,My name is Dixie and I am new. So glad to find this. I have been searching for something like this for so long. My husband (Mike) was diagnosed with cancer on the base of his tongue and the tonsil area in October of 2003. It was not operatable so he underwent 45 radiation treatments and 2 chemos. He was told upfront this was a major overdose but seemed to be his only chance at beating this. He did amazingly well and went into remission. He experienced a lot of after effects of the radiation, one of them being a small open wound on his gum line that would not heal. After much research and a lot of prayers the decision was made to go through 40 hypobaric treatments. To make a really long story short in May of 2007 another tumer was found in the same area as the first. We are still not sure if it was a reoccurrance or a second primary. This time we went to M.D.Anderson. They gave us no hope (12 months maximum with the last 6 being really bad) and only offered an experimental program that we were told would not benefit him any, but would further the research effort. Since we lived so far (We are in Mississippi) we decided to come home. He went back to his oncologist who treated him the first time and he agreed to try reradiation. He had 44 more radiation treatments this time 2 a day along with 3 more chemos. He had a peg tube put in and was told he would never eat again. He was o.k. with that and did wonderful again. On November 24th about 5p.m. we were watching t.v. and he coughed and a big chunk of blood came up. It continued, we went to E.R., they admitted him and called in ENT. He bled an unbelievable amount until 9a.m. on the 25th when they did emergency surgery. They clamped the small carodid artery on the right side and put a trach tube in. I know he was literally prayed through that surgery because the doctors gave us very little hope of him surviving and we all said our good byes. I am an only child and only have one daughter (who has 3 children ages 3-9) and my mother who was 83 had alzhemiers and lived with us for the past 5 years. I called our pastor at 4:30 in the morning to ask for prayer and by the time Mike went into surgery we had over 30 friends and church family with us. Well 4 days later we came home. My mother was placed in swing bed at our little local hospital while I was with my husband. She was in excellent physical health just mentally having trouble. She fell while there and broke her hip and had to have surgery. Another long story short she came home on a Saturday from the hospital and the following Saturday she died. This was on Dec.29th. Mike had a doctors appointment on the 2nd of January 2008 and the doctor is telling us he does not see any tumer. He is still on a tremendouse amount of pain medication and has a really lot of mucus from the trach. The doctor says the pain he is still experiancing is symptomatic of nucrosis which he has from all the radiation. He can not talk and does not want me out of his sight and I have not been since we came home the 29th of November. Aside from this he is doing really good.
I, on the other hand am hanging by a thread and it is beginning to unravel. I can't let him know because he does not need any more problems, especially a wife who is an emotional wreck. I need answers that noone seems to be able to give me. He is very optomistic and does not want to hear anything negative, therefore I can't ask the hard questions.
How long does he have? (And yes I know it is in God's hands but what are the professional opinions?)
If the cancer is gone what will happen with the nucrosis?
What effect is all this pain medicine go have on him? He takes fentynol patch 100mg every 24 hours, hydocodone,oxycodone,oxycontin,daily and ambien to sleep each night. I know this sounds unbelievable but he seems fine. He functions like he is not on anything except for the fact I don't let him drive.
Sometimes when he coughs there is a little blood in the mucus but it is not much. Where is it coming from and what does that mean?
I just need to know have we got a miricle and if we have I certainly want to give God all the glory or do I still need to be prepared to give him up. i don't think I can handle another bad surprise. I am having trouble dealing with Mom's sudden death already. Also our daughter really needs to make a job related move but is afraid to be very far from us if we are facing trouble in the near future.
Has anyone else out there been through anything similar and have any input.
I'm sorry this is so long but it has been almost 5 years of events and they all seem important for someone to understand .

Dixie,
Just continue to ask for the strenght to carry on. Every minute of life is a miracle. I too have been through 5 years of physical and emotional turmoil. I have had multiple surgeries and proceedures for two unrelated cancers, cataracs, swallowing difficulties, and several suspected problems which turned out to be false alarms. My husband had surgery for colon cancer. I was hit by a car and came out with no more than a bruised hip. My youngest sister has been battling a very agressive form of breast cancer for 2 years. We evacuated to Houston for four months and spent a day from hell evacuating from there to San Antonio to avoid Hurricane Rita. Shortly after we received our FEMA palace and returned to New Orleans my husband landed up in the ER with a bout of life threatening asthma. We could only give long distance support to my eldest sister who relocated to her daughter in California after Katrina and the Corps of Engineers destroyed her home of 50 years and then endured the agony of having her husband survive two leg amputations and numerous hospitalizations and bouts of rehab to finally waste away and subcum just before Thanksgiving. We have a son who is a paramedic with the city of New Orleans and is a medic with the Naval Reserve. In the spring of 2005 his unit was called up for duty in Iraq. Because he still had not completed his specilazed military medic training he and a few others were sent to California and eventually were sent home in August. When Katrina hit he stayed on the job in New Orleans and for a while we had no idea if or how he survived, Then weeks would go by with no word from him. This past year he was notified that his unit was again being deployed and after several months he went in September and G-d willing will return in April.
Through all this I have come to realize that emotional pain is far worse than physical. To survive these pressures takes a great deal of faith, the acceptance of support from friends and strangers and a recognition that there are some things for which there are no answers. There are times when the best releif is to do what you have begun here. Express your fears and worries, ask for help and look for practical ways to deal with your situation.
Wishing you and Mike the best,
Malka

Dixie,

None of us here can provide the answer to your husband's specific medical situation, but we can provide support and a sympathetic ear.

And...it goes both ways. Those of us, who are having a much easier time, but have bad days (like I am having today) need to read your story and realize that they are blessed and things could be much worse. We all need each other.

Our prayers are with you for that miracle, but if not, for the strength you need to carry on.

Deb

I seriously want to tell you that i believe in miracles but i don't.There are two reasons for that and one of them is that i am a trained health professional,and nothing that i have seen in my life has ever given me cause to believe in anything except what i can see hear and touch.
However what i do believe in is the power of the human being to fight disease and survive,and if this is backed up by a loving supportive family,all the better.

Whatever is going on,just be thankful and enjoy,but you wouldn't be human if you weren't always waiting for the other shoe to drop.

Now you have found somewhere to let out your fears and expectations,and that alone should relieve some of the stress you must be feeling.

welcome,and take advantage of the ears offered and shoulders when needed.

love Liz

b,

You definitely have a lot on your plate right now but your doctors are the only ones that can evaluate your husbands condition and recovery. Given what M D Anderson told you, everyday that he is alive should be considered a testament to his will to survive. We all hope that he shows M D Anderson that there are alternatives. Please keep us posted and please talk to us about how you feel.

My heart goes out to you. You have been through so much and hopefully will have a long road ahead - with improved quality of life for both you and your husband. I will add you to my prayers in the hope that your family can find the strength to carry on in peace.

Donna

Hi Dixie,
I will keep you all in my prayers.
I was so lost when I first found the OCF...still feel lost now and then, but at least here, someone always helps, even if it is just by getting on and saying hello. I would use that search engine provided, I found so many answers by doing so...of course, it loaded me with more questions too!
I understand your fear about the time, I lost my brother to AIDS, and all I wanted to know was how much time? They told us 6mos-maybe a year in Nov of 1994, he lost his battle Jan of 1999.
I also lost my aunt, Lauren, who ws also one of my best friends to lung cancer with mets to her brain...again, wanted to know time but that time I didn't question time as much--feared what i would be told?
I'm so sorry about the loss of your mother. I can't imagine going through so much and then to have that shock. My heart aches for you.
Dixie,
You need to find a way to get some time for you. It helps so much. When I have been worn down and not taken a break I have become very agitated, and usually very sick...no good to anyone.
Love and prayers to you. I hope you are blessed with a miracle, I know my family has been.
Donna

Dixie,
there are many times that I wish God would stop testing me to see how much I can handle! I would suggest some respite care and small breaks from this for your own mental health, maybe even one on one therapy as well.. Perhaps people from your church, experienced with cancer, can help you. This is the classic "boulder that is too heavy for one person to carry" situation.

Secondly I would highly recommend a cancer caregiver support group. You can get references for that from your social worker, oncologist or even the local newspaper.

Nucrosis, I think that you mean necrosis which is tissue death. The body will typically slough it off. Coughing blood and tissue particles is pretty common after radiation therapy - I did for a good month post Tx. I didn't have any major bleeds though. Repeating radiation has been under clinical trials for some time and there has been some success with it. It sounds like thay are doing all that they can and it truly is in the hands of the Master Healer, who is God. The doctors can treat you but God heals you.

His pain meds sound about right for his condition.

Hip fractures frequently cause death in elderly patients because very often fat from the bone marrow, released by the fracture, gets into the blood and causes a stroke or heart attack.

I am very sorry for your loss - we are here for you.

DIxie you certainly have lot to deal with at the moment and I just wantd to add my warm thoughts and wishes for you.
If you would like come and join us on the forum "Friends".
Brian geneously gave us the space to communicate in a nonsense manner with all the friends we have made here. You are welcome to join us... we have a lovely Island with no worries just a place to realax and get pampered for a while ( all imaginary of course)
Take Care Dixie

Dixie:

What you are going thru in such a short time would be overwhelming for anyone. Im very sorry for your loss, losing a parent is very difficult. I will keep you and your husband in my prayers.