Hi Sandy,
I am so sorry you had to hear this words. Alpaca is right: After the initial shock, the warrior in your husband and yourself, will kick in. I recommend you get a binder with dividers, and keep a couple of copies of the initial diagnose in the front pocket of the binder. Make as many divisions as needed, one for notes and ?, one for medications, one for doctors, etc. Get well organized and make it his life's new project. We will be here to help and cheer, and share, if needed our expertise. I had my 4 year check-up yesterday, and I am grateful every morning for another wonderful day.
Love, Loli

Loli thank you for your encouraging words... I am hoping 4 years from now we will feel as you do! Thats a great idea to get a binder and dividers... I would have never thought about it!! We dont know what we are in for, but Im guessing organization with notes, appts, etc will become very important! Thank you again! I am sure as this progresses I will need a shoulder to cry on!! Much love & hugs to you!
Sandy

The binder became my mom's lifeline and almost strength-giver as she accompanied my father in his cancer journey. More than once she produced test results that weren't in his medical records during an appointment (PS: this wasn't at Mayo, but rather the community hospital where his treatment was continued.)
She was able to quickly produce a list of all his medications when needed. Your pharmacist can print out a record of all his meds and supplements (if any) for you.

I fully endorse the idea of a binder. I didn't use it but it would be a very useful resource. I just didn't think of it!!

@chapmanswife I am so sorry to hear the news. Even though it was expected, it is still a shock, isn't it? Give yourself time and get as much rest as you can. Praying for you both as you face this new challenge! Teresa

I got a binder & dividers.. trying to set it all up! Any advice on what catagories to use? I have 8 dividers.. also printed off a calendar, included loose paper & spiral notebooks...thank you again for the awesome advice to get organized!!
Sandy

I set up a binder for my husband who has salivary duct carcinoma. These are the categories that I have found helpful: medication list, tests results, Primary physician, radiologist, surgeon, oncologist, treatment, research, appointments, insurance. I keep several sheets of lined paper in each doctor tab to record notes. Unfortunately, Ken was stage 4 when diagnosed, so surgery and radiation have not been an option. He is currently taking immune therapy.. Keytruda. The therapy has damaged his endocrine system, so we will be off for 9 weeks while taking steroids. The good news is the tumors do not appear to be growing. We are scheduled for a scan in 2 weeks and will resume therapy in 3 weeks. Being organized is key to being able to support your husband. This is one area that I can control.

@chapmanswife Hi Sandy: As I see there is a discussion on keeping a binder, I'm reminded of a great little book I read a number of years ago, Doing Well at Being Sick. The author, Wendy Wallace, has a number of serious health issues and I'm sure you will find lots of information and inspiration from her book. She also kept a binder that traveled with her when she left home. The story of how she and her family dealt with her illness is really remarkable. I believe it can be ordered from Amazon. Teresa

That is very good advice. It would give you and your husband a sense of control, something that we need when life throws these things at us.

I will look that up. It sounds like excellent advice.