Hello everyone. My husband had his surgery on Wed. Jan 21. They took him to OR at 9:30 am and it lasted until 11:30 pm. Thankfully, the surgeon called me in the waiting area every 3-4 hours to let me know what was going on! The only surprise was that the tumor in his lymph node under right ear was actually in salivary gland, and it was as big as a small orange!! The tumor had infiltrated his right cheek and a bit at the base of his skull. (They had done CT two weeks earlier and it didn't show..how?) It has been growing very fast. Makes me wish we hadn't wasted time trying chemo.

They had to rebuild the inner cheek with chest muscle, then removed tonsil tumor (not a big deal) and the hard palate along with several teeth on the right upper side. They also pulled up chest muscle flap to his neck. Putting him back together took 4 hours! He now has very wicked incisions and a "dent" at this right ear, but he is doing better after a few very hard days....trache tube is awful...he had asthma attacks and couldn't get anyone to believe that's what was happening. Of course he couldn't talk, could only write messages, and they kept saying, "You need to be calm. It's anxiety." I finally convinced them to rig up a way to get his usual asthma inhalers going and another med using nebulizer. That was pretty scary stuff.

Otherwise, we are doing well. Scott is feeling better each day and is going to walk around later this afternoon. The first few days were very rough, but Saturday he seemed to really start the recovery process. I have used strength I didn't know I had! We'll be here, at UVA, for at least another 7 days. Thank you, everyone, for your encouragement and prayers. I really needed to talk here (and still do!). I'll check back in a few days.

Christine

Hi Christine
Thanks for the post, we are all here praying hard for you both... Don't forget over the next few weeks we are all here if ever you need us..
Love and Hugs
Helen

Oh Christine! What a fantastic job you are doing as your husband's advocate! That business about the asthma just scares me to read it. Good for you for intervening on his behalf. I had some mouth surgery with some teeth removed and a graft, though not as extensive as what your husband endured. I had the trach and the scars and the swelling and it was truly amazing how quickly I healed, given how awful I looked. When he gets up and around he will feel much more in control, I guarantee. Pretty soon he will be able to talk in bursts by covering the trach. That, too, will lift your spirits and his. Be sure that you get enough rest, eat properly, and drink enough liquids. Your job as care giver is just beginning and is a very hard one. Please know, however, that whatever you enounter along the way, there will surely be someone here who has been in the same situation and can advise you. Be strong, Christine! This is a tough time, but I'll bet you will see progress every day from now on.

Hi Christine,
I hated the trach, it was the nightmare of my surgery and my biggest fear if I ever need surgery again. I felt like I couldn't breath and would have anxiety attacks over it. My main goal was to get it OUT and even when they changed it out for one that I could talk with, I still wanted it OUT. So, mine was out within five days and from that moment on I started a quick recovery.
I am praying for you and Scott, it will only get better now.
Minnie

Thanks Helen, Joanna, and Minnie. You are all right that things are getting better each day. My husband was discharged yesterday--day 8 from surgery rather than 10-14 as we were originally told. He's doing very well even though we both don't like that trach tube!! Hopefully he won't have to keep it very long.

Thankfully Scott has a very good attitude because there are several things we've got to come to terms with post-surgery. He has paralysis of right side of face--the largest tumor had infiltrated nerves and even bone of the skull near the ear. So he barely blinks that eye (amazing he can at all) and docs said later they'll implant a tiny gold piece to outer corner of lid to help it shut when he wants to shut it. Anyone ever heard of this? I wonder when all this is behind us how much he will be able to control speech (he will be getting a prosthesis for palate later, but paralysis will cause slurring, right?). Also, we got some scary news the day before leaving the hospital: although preliminary pathology done while my husband was in surgery looked good, further testing shows that some bone from hard palate area is questionable. The word "cancerous" wasn't used, but the doc said tumor board would discuss the case today, then in 3-4 weeks they may have to remove another piece of bone for further biopsy We were very disappointed and confused and didn't ask a lot of questions at the time, but I do remember the doc saying "a total paletectomy is not an option" and "maybe radiation" and more chemo will take care of it IF there is still more cancer. So, we are holding fast to the thought that they removed all the cancer, but if not, that this is still treatable. The one thing the doc said that is keeping me from panicking about this was, "This is not the best news, but it's not the worst news either. Let's cross each bridge when we get to it." We go back to have 104 staples removed next week, and I don't even know what to ask about all of this. My husband has done so wonderfully--what a great attitude he has, and he is regaining strength each day (the doctors said, Don't overdo it!!!) Scott is trying so hard to stay upbeat. It has been 14 months since finding that one tiny cancer spot in his mouth, and now look where we are. It has happened so fast. I try to be positive, but I cannot help but worry.

I ask that you all keep him in your prayers. We are very appreciative and thankful for all you do!!

Christine

Hi Christine, I wouldn't worry about his speech. I have a partially paralyzed tongue and very few people would know except if I tell them. The nerves for the face and the nerves for the tongue are separated by a fair distance. My guess is his speech will be fine after a while.

Good to hear he is recovering quickly!

Thanks, Mark. I've read several of your posts; you have such an incredible attitude! I'm sure you have been a wonderful inspiration to many folks who come here and read these pages in search of that "something" that will get them through another day.



Christine

Thank you Christine.

Truth is, it is the little "something" that gets ME through the day!

We can all build on the positive things and brace each other on the rest.