Lori Donna is right you are being hard on yourself. You are just reacting. Give yourself some reaction time you are human and allow yourself to be. I can immagine myself being less than graceful in your situation. KNow that you do have a lot of support and some very broad shoulders here. We care,understand and are beside you. Like I have been told over and over and over again...you are not alone and never will be!!

Susan and Donna,
Thank you both so much. We are feeling much better tonight. We met with the surgeon today and he wants us to go back to St. Luke's in Milwaukee for Cyberknife therapy. He seems to think that Ron has more time left than the oncologist believes. And I have decided today that I will just keep thinking "one day at a time" like Ron does. Ron is to start the Erbitux this week, and if we can combine that with the Cyberknife, I will feel much better about his chances. Susan, I am so sorry you lost your brother, but I am glad that you remain here to help others. Your words were very much appreciated. Donna, I think you have a great deal of grace, and I will find that book for sure. You are so right about there never being enough time, and being thankful for all the days we do have. Thank you for reminding me of that. I truly AM thankful for the 24 years I have had with Ron, and look forward to many more.
Lori
Dianne, Thank you, too. It is so nice to come here and know that you have all either been through it yourselves or as caregivers. It means so much to talk to people who understand where you're coming from.

Last week was the week from hell. We were feeling much better after seeing Ron's first surgeon, and the possibility that he could have Cyberknife treatment. Well, that didn't last long. The following day we met with the Oncologist and he said that the tumor board recommended another "salvage surgery." (This is after he previously told us further surgery would not help!). We are now "sitting tight" (his words) on chemo!!! He does not believe that Cyberknife will work because the tumor is so large. It starts under the tongue and wraps around to the top of the tongue. He got us an appointment with the surgeon who did his Sept. surgery for tomorrow, the 22. Before we see him though, I had already made an appt. with an RO up at St. Luke's to talk about Cyberknife, so we are still going to go and at least ask about the possibility. My biggest fear now is that we are reaching the "quality vs. quantity" issue. I just can't imagine what the surgeon will remove this time. I mean, he could want to do a total glossectomy. I know that there are people here who have had that. Could I ask what is your quality of life? Can you still talk and eat? Ron said if he couldn't eat anymore, he would not want the surgery. I don't know what to think. Of course, I want him here as long as possible, but at what cost? We always talked about him going out still able to ride his Harley and that is what I want for him, too. I am feeling very hopeful about the Cyberknife, not so hopeful about the meeting with the surgeon tomorrow. I feel anger towards him anyway, from the last time. I still wonder if he had removed the tonsil that was affected and removed the entire mandible that HE KNEW had cancer in it (fibula was thrown away!), if this cancer would have recurred so quickly. I guess I'm just trying to find someone to blame for this mess! No one should have to go through this three times. Pete D., if you're reading this, I wish you the best on the 30th. Hang in there, and fight like a mule!
Lori

Lori, we all want reasons, answers and someone to blame - that is human nature. However, it is counterproductive to stay in that frame of mind ... so give it its moment and then move on ... I am so sorry your hubby (and you!) are having to face this again and I wish you the very best possible outcome. Nothing wrong with second or even third or fourth opinions if you feel someone else may have a better approach on it ... go with what you feel is what you want / need at the time ... I am sure this is a tough time but I hope you are able to have a happy holiday time together, letting this issue wait until Santa is back at the north pole to focus on too heavily. - all the best to you and yours -

Sorry you were both disappointed about the CyberKnife.

Lori, when I suspected this would be cancer again, I ran through the options as I saw them and concluded I would continue to lose body parts rather than surrender to the cancer. I was glad to find out that there was a step or two between now and losing my entire tongue and swallowing and tasting.

Life with a PEG is better than no life at all -- I know a family where the mother is deaf and has a hard time speaking -- There are plenty of people who can't walk and others who are blind -- Not being able to enjoy food is actually pretty easy compared to what they have -- Flexibility and adaptation are the keys to something like this.

If this were happening to David, I can see him biking up a storm with his hydration pack fixed to his PEG!

All I have to do is sleep through the part where I pay Dr Haakenslash and his Cutthroats to hack away and sew, then endure a night in the ICU (Intensely Comfort-Unfulfilled), then some good pharmaceuticals, then endure the physical therapists, then come home and recuperate, with my NetFlix subscription jacked up a little. It's still a lot easier than enduring radiation!

What we sometimes blurt out is not what we will decide when the time comes! Would you guys, singly or together, benefit from some therapy, either human or some anti-anxiety meds?

Rita and Pete,
We are planning on having a happy holiday season no matter what happens. We are going to drive down to MO. to see my sister and her family, and that is always fun and mayhem! I think it rejuvenates both of us and gets us out of cancer mode for a while. It also gives my sister lots of reasons to cook and try to fatten Ron up. Pete, I thank you for reminding me that things could always be worse and if Ron has to lose some more function as long as he is happy, it is worth doing. And yes, I am already on Xanax, especially for our stressful appointments. It really kind of keeps me in "secretary" mode instead of wife mode. I just make sure I write everything down and try not to react emotionally at that time. Ron doesn't need a thing! His attitude has never changed--he is always happy and ready and willing for whatever they want to do to him. It is me that has the problem. I am really trying to work on that, but it's hard at times, as I'm sure you know. Keep that sense of humor! You remind me a great deal of my husband. We have appointments on Monday and Tuesday of this week, then we are heading south to forget for a while! I wish all of you a wonderful holiday. Treasure those moments! Thank you all.
Lori

Lori,

I know it's tough right now but it is what it is and you both need to go into a fighting mode. Leave the sorrow behind and focus on beating this cancer anyway you can. At 56 he has plenty of years left and if he has to do without his tongue then that's way better than the alternative. I didn't have to have any surgery so it's easier said than done in my case but many others have done what he might have to have done and have been able to manage so please encourage him to talk to us or any support group that he feels comfortable with. I have seen many that opted not to continue treatment and none have survived so please continue fighting as long as their are options.

Oh, you people are like a (good) shot in the arm for me! Today we met with the RO up at St. Luke's and Ron IS a candidate for the Cyberknife. His best option is still a second salvage surgery, but if he decides he does not want the surgery, he can do 5 Cyberknife treatments and have about a 60% chance. The surgery would again be extensive (we met with the surgeon following the RO), this time his entire lower right quarter of his mouth would be removed and rebuilt, using hip bone this time. The surgeon also said that he would have to take at least half of his remaining tongue, which would leave him very little. There is the possibility that he could need a total glossectomy, but he won't know for sure until he gets in there. I think Ron is thinking hard about what he will accept. I know that he wants to live, he just needs to come to grips with what life may be like after surgery. I told him I am with him no matter what. I can handle taking care of a trach and a PEG tube, etc. None of that bothers me at all. I just want him here. Life will be different, but it will be LIFE and that is all that matters. Happy Holidays to all of you!
Lori

There are those on the board who have had total glossectomies and do just fine. I have only about 1/8 of my tongue left and I too am coping well.

You mentioned what the chances of success were for the cyberknife but you didn't say what was expected from the extensive surgery - success % wise, but I am sure you will consider all the options carefully. When is the planned surgery?

You're right - life changes and we adapt. We are here to help you cope with whatever adaptations you two might be making.

Donna

Just reading these posts made my day so much brighter. Have a great day all of you. Wisdom vs questions. very good.