Jennie,
I don't know what kind of job you have, but did you consider taking family leave rather than quitting? Federal law allows up to 12 weeks of unpaid family leave to take care of a family member. Just a thought.

Take care,
Eileen

I am amazed with all of you who are responding to my original post. I cant even begin to tell all of you how thankful I am for this forum. It is really helping me to get the "correct" information, and you are all giving me some of what the future holds. The scariest part for me is the unknowns, what our life is going to be like with cancer, and what treatments are going to look and feel like. It is so nice to know that I can come here in my lonely and happy moments and share with all of you, and really have someone who understands exactly! I know so many men who have been in my spot, but never another woman, and to have this support is wonderful. I know I will have more questions, thank you for being there, hopefully I will have the insight for someone else down the line.
Eriks surgery is tomorrow morning, and so we are preparing all his favorites tonight!!! (minus the tomato sauces)

Jennie, you and Erik are in my thoughts and prayers. Love, Carol

Jennie,

I'll be thinking about you and your husband. Take it one step at a time. You'll make it through. You will need to take care of yourself so that you can take care of your husband.

As far as the trach. I had to have one. If your husband has to have one, tell him that it isn't as bad as it looks. After a few days my ENT gave me a valve for the trach that enabled me to talk with my family. Sounded strange but it did the job.

As for the amount of pain, it probably depends on each individual. I never really did feel much pain. I had a morphine pump when I was in ICU, and for a few days after I was moved to a regular room. Then I was weened off of it. All pain meds will more than likely be given intravenously.

Start planning now for your husbands home care. My wife worked with the hospital's social worker to set up a visiting nurse and speech therapist to visit our house. You'll probably see a speech therapist while your husband is still in the hospital.

It warrants repeating. Take care of yourself. And those two kids. I'm married and have two kids also. My wife and my kids are a big reason why I fought so hard and continue fighting. Your husband will need you throughout this ordeal.

We'll be thinking about you and your husband. Good luck tomorrow.

John

If you are taking some time off you may qualify for an hourly pay (within limits) through IHSS (In Home Supportive Services). They actually pay for stuff like doing laundry, shopping, errands, etc. and spouses are eligible. In CA, it is administered through the county welfare system. The American Cancer Society will also pay a mileage fee if your round trip is over 60 miles to and from the treatment center.

He's probably too young for SSDI but he might qualify for SDI. Check the SSI website for qualifications/eligibility and documentation requirements. SSDI and SDI are retroactive from the date of disability as a rule.

Ask for copies of all medical records and lab reports. You don't need actual scans but the scan reports are very helpful. You will also need a certified copy of his birth certificate for any federal claims.

I was disabled for almost 2 years and was in very good health going into it.

It's good that they are hitting this aggressively as his young age actually works against him a little bit.

It is the morning of surgery, and I am just ready to get the show on the road!! For those who were thinking about his disability status, Erik works for a medical device company, and they are being more than great about all of this, he has wonderful benefits, and plus co workers are pooling vacation time for him. I will be meeting a social worker today so I will ask about the stay at home caregiver benefits here in Washington.
Thank you for your prayers and support

hi jennie. good luck with surgery. i sent an email to you. i think your husband and i have quite similar situations.

Jennie
As soon as you can, let us know what is happening..
May your God walk with you..
Sunshine.. love and hugs
Helen

Hey everyone, three days down!!! Erik had surgery on Wed and it was supposed to be 3-4 hrs and turned into 6. But overall it was very successful. He ended up with 40% of his tongue removed with clear margins!!! (Hooray) and they did a radical neck dissection and we havent gotten the full pathology report yet. The doc did find another tumor lurking within, and behind the lymph nodes that was undetected on the MRI, which she removed. Erik is 6'4" and weighs almost 300 pounds, the doctor had a very hard time getting all the nodes, and that was why the surgery lasted so long. He woke in a lot of pain, and it took almost 8 hours to get it under control. He went to ICU and only spent 1 day there. Yesterday was good and he rested well, Today was really good in the A.M. he walked and talked (slurry) and then he was taken to get his PEG tube and well that put the whole day down the tube.(pardon the pun-Im exhausted) He hurt so much afterward, and then began to get nauseous, finally the nurse gave him some fenergan(sp) and he fell asleep, for about 2 hours, but meanwhile he didnt give himself any pain meds and well..got behind on the pain again. When I left tonight he was starting to get comfortable again. This truly seems to be a nightmare, I know it is bad right now, but does it get better? I hate that he is in pain, and plus so many people are trying to visit, its overwhelming to me just having to talk and keep them out of his room. Im kindof complaining, Im kindof just tired and I know Im rambling. I so appreciate those who have e-mailed me encouraging words, and tidbits of advice it sure is helpful to me. God bless all of you
Jennie

Jennie,
I can't sugar coat this for you - yes it will get better for a little while as recovery from surgery is fairly quick (unless there are infections and other complications). Just about the time he he feeling a little better then they will slam him with the radiation and chemo part of the treatment and that is far worse than the surgery part. He'll have a few weeks before the radiation effects set in then the real nightmare will begin.

Surgical recovery - about 3 weeks.

Radiation and chemo recovery - about 6 months.

I would keep the visitors to a minimum and DEMAND better pain mamagement - it is a PATIENT RIGHT! He should be getting oxycontin, demerol or morphine at this stage. Probably a drip that he can self administer as needed with a push button (PCA). The pain scale is 0-10 with 10 being totally unbearable - use those terms with the nurses and doctors they understand that.

see:

http://www.cancer.gov/cancertopics/paincontrol/page2

See page 9 in the link below

http://www.cancer.org/downloads/CRI/NCCN_pain.pdf