FreeBird

Doing OK had a CT scan about a week ago and will get the results at next visit with oncologist. Not expecting good news as I have been having pains growing all over my mid section and feel that the disease is progressing even though we have been treating with a very aggressive chemo regimen.
Feeling a bit down as the side effects of chemo are wearing me out I cannot be even mildly active without losing my breath and having my heart rate go through the roof. I know that a positive outlook helps but having a hard time staying upbeat when all the news is bad. Jealous of people that say they continue to go to work while treating as I have been "one with the couch" because of my reaction to chemo.
Continue to try every idea possible to gain the upper hand against this challenge but would really like a break to rest. The bad thing about that is I took a break for two months to try to get the chemo side effect under control and the disease went wild and stormed back and spread to areas that weren't effected before. Now the fight needs to go on in different directions and there seems to be no end in sight. I guess the good thing there is that the disease can't see and end either so we are at a stalemate until I decide to give up for as we know the cancer will never give up.
On the brighter side we were told by our youngest that she is expecting our 5th grandchild in May 2013 . Another reason to fight on. We really didn't expect this one to have children but mother and father are both giddy with happiness and we are certain will make fine parents.

Thanks for reaching out I have been looking for a place to vent some and this helps

A Prayer for the Caregiver
By Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

http://www.youtube.com/watch?v=Jnxvn5CSuc8&feature=share PLEASE, YOU MUST WATCH THIS!!!

We drove to the panCan conference in chicago couple days ago. it was informative,but nothing new. I am REALLY intereseted in researching publishing from Europe (France specifically)and Australia. Seems what is open to general public does have to go through FDA filter,if you know what I mean???

Once again Hello Mr. FreeBird: Yeah It seems a lot of what I've been told since the beginning of this ordeal is never etched in stone and rarely remains the same for very long. Can't tell if it's just my ignorance of the subject at hand or if it's just the way the Medical Profession wants to keep us wondering/dazed & confused. I've had a many of 'my team members' telling me to stay OFF the internet and away from groups like this because they just tend to scare the he## out of "their patients," and low and behold here I am yet again trying to seek out information that I feel I should be equipped with before I go full-tilt in this battle of mine. You were exactly right about what my pathologist report said as I took it down word for word. ". . . from your previous comment that they told you "Well-Differentiated Squamous cell carcinoma of/in the pharyngeal wall (FS1), left tonsil (FS2)" and now staged at 4."
I must say, it appears as though you seem to know your way around here pretty well Thanx for the link it was quite interesting, but still left me with a few questions for my Oncologist to answer for me. I told all my team members that "if" they wanted to remain my team members, the one thing that they absolutely must do is be "truthful" with me at all times no matter what they had to tell me. A fair exchange I'd say, they speak nothing but the truth to me, I'll speak nothing but the truth to them.
Once "I DID finally get On Board" and accepted the war that was placed at my feet, I've come to the conclusion that I will hit it with everything I have to fight this devilish disease with to its' or my end. This is my body, and there's only room enough for one of us in here, . . . and that somebody IS ME! ARRRGH!!!! CHARGE!!!
I do apologize for getting a bit carried away there, sometimes it just slips through the cracks of this old warrior.

Thanks for the well wishes. And I thought I was the only one getting burned out caring for my spouse. I feel completely unprepared for what needs to be done. We'll dealing with a reoccurrence of cancer, heart problem, diabetes, mental confusion perhaps due to sometimes low blood sugar and a recent TIA. I have no one to help, absolutely no one. My family knows nothing as my mom already had a heart attack, so that is not an option to confide in her. We live two hours away from family. My best friend died last year so I have no one to talk to. Really...what to do?

Hey once again FreeBird, Yeah, the more I thought about it the more I realized that had I not at least "tried" I wouldn't be anything more than a selfish S.O.B. My wife has ALWAYS been here for me, and she's truely been to he## and back with me over the last +36 years. I owe her at least this much. I mean I've always said that I wanted to experience all that life had to offer, I suppose this is jus another offering. Besides, if they do "cure" and I use that term loosely, my cancer and I end up with a good pain management doc out of it, then, maybe, just maybe, life will be worth living once again. I know there will ALWAYS be pain, but if it's manageable I can accept that. Your idea about the headphones and radio is what I had in mind, that's about all I've been doing since this ordeal began is replacing a 4,000+ video library that I accidently erased, (permenantly deleted more like it) coming here and going to the ACS website to learn more about 'what's next' on the agenda. I was told by mt Oncologist that the treatments could last anywhere from 4 to 6 hours, that sound pretty much like the norm? It sure seems like a long time to be sitting in one place. I just want you to know, that I really do appreciate all that you've given me through this. It's the kind heartedness that I've found here that's turned me around and got me into "kick-a$$" mode.

Hi FreeBird. What is your profile picture a picture of? It reminds me of a game that I used to play with my brother and sister when were were little.

Hi FreeBird: Thanks for the web referrals about insomnia. Benadryl doesn't do it for me--not even with Lorazapam. I have even stayed awake after taking an Ambian! I am tired and grouchy today; talked to Mom who just doesn't get it--thinks I can be cheerful, even with this! ARGH! (BTW, is that a rug in your photo or what? It's pretty!)

Thank you for your response to my posted question! I really appreciate your insight, and loving words shared.

Thank you for your warm welcome. Looks as though, this is a space to meet others in similar circumstances so that we may all meet again, somewhere. I'll try to make the most of this opportunity.

Freebird:
I've been trying to give my pain management doc "the boot" for like the last 2.5 years. The problem I seem to run into is that for some reason here in Missouri, before I can get a referral to a new pain management doc I have to be evaluated by a surgeon. The surgeon I had to see wants to do a radical new surgery that I didn't/still don't really feel comfortable with and now that cancer turns out to be a factor, even if I wanted to have it done I can't until cancer issue is totally resolved. Catch 22 in a major way. I really want to eradicate my cancer, I just don't believe I have what it's going to take to accomplish it. I've still not recovered from a near death experience from complications from pneumonia, and cannot tolerate the pain that I had before cancer became an issue. I know, I sound like a big baby, but I already deal with a whole lot of issues that are discussed here in the questions forum, . . . pain, nueropathy, insomnia, exhaustion, etc just to name a few. I'm brand new to all of this, I admit, I'm somewhat scared, a whole lot nervous, slightly depressed as well as anxious and have severe reservations. Not that I'm overtly religious, or anything, but I feel that over the past few years God has given me several chances to put an end to my misery. I fight like the devil to survive only to get knocked down once again. As far as my family, giving up is NOT an option. Thanx ever so much for assisting me in ""my" time of crisis." I feel for once in my life the tables have turned and I'm the one who's going to need all the help I can get.

Dear FreeBird:
First off allow me to thank you ever so much for taking the time to respond to my question, and being in the courageous position of "caregiver" it's been a long haul for my wife I know, 'cause I'm sure I've been difficult to deal with over the years. I've been shouting as loudly as I can with my pain management Dr. For the last 3 years. He took my morphine away from me back when I was as close to death from pneumonia as I've ever been. I've tried to get a new pain management doc but for some reason here in MO we have to be evaluated by a surgeon before we can get a referral to a new pain doc. The surgeon that I had to go see wants to do a radical, relatively new procedure on my spine, but cancer over ruled any possibility of that. Not that I was receptive to ANY more spine surgery. Yes the morphine and dosage I was taking helped me tremendously. After taking it for about a year I went back to college for 4.5 years and eventually went back to work part time for the first time in over 25 years. Like I said, it helped tremendously!! I don't know the first thing about treatment for cancer, in fact other then my sister-in-law, I'm the very first person I've ever met with this disease. Which Dr would you recommend I discuss my pain issues with, oncologist, radiation Dr or chemo Dr? Getting pain meds from regular pain management docs is all but impossible here.

It won't let me post on your comment, so here goes... Not so great news from docs. We are at a stand still. Mama's health is too bad to continue treatment. At this point there is nothing we can do except love her through this. She isn't giving up, just shutting down. As our doctor, it was said that it could be anywhere from 4 weeks to 4 months. As our friend, she said we probably won't have her for Christmas. We interview with Hospice tomorrow. The pain in her hip is one of two things. Either cancer in the bone or a hematoma. Either way she is in horrible pain. Right now, everyones goal is to find her some relief. She goes for a bone scan on Monday. We will know more then. I am angry. My heart is breaking...for her, for my kids, for myself. It just sucks.