Diane & Rosie,

I have expressed many times how difficult I believe caregivers have throughout this whole process. It's okay for us as patients to give in to our thoughts sometimes. I think it's alomost expected. But you all never can - it would be too hard on the patient. You put up with the bad tempers and irritability that we as patients experience and tend to take out on those closest to us. Cause we know you love us and we feel so very safe just being ourselves with you. The stiff upper lip we show the rest of the world sometimes slips around you all.

You have been through so much and been so strong I don't have a doubt in the world that both of you will get past this and return to the source of strength that you have been.

Everyone hits a bump in the road, you guys are entitled. Please know that you have my thoughts, prayers and total admiration for the care you give.

Dinah

First of all, Diane, I'm sorry I sort of took over your post. I didn't mean for people to start focusing on my problems more than yours. Sorry. Now, the important stuff - you need to talk to each and every one of your husband's doctors and INSIST that they keep you in the loop. You need to know what is going on with your husband's treatment. You need to question what you don't understand. Push for answers and don't back down. For his sake and yours, you need to ask, ask and ask some more. Don't ever doubt your importance in this fight.

Bobbie,

I am so sorry about your husband. I really don't know what to say except that I hope they are wrong. As to your question about the pockets of fluid - Heather developed a walnut sized sac under her chin a couple weeks ago. It was filled with fluid. There was a small amount of pus, but most of it was clear. They treated it as an anaerobic infection, but the culture came back negative. Before it was cleared up, she developed another sac on the side of her neck. Her mucous also got worse and changed from clear to yellowish green and her throat felt like it was closing up. It turns out that the fluid is probably from part of the tumor being necrotic. Also, her severe trismus and severe pain are being attributed to this tumor. I wonder why they couldn't put 2 and 2 together and figure this out earlier. She never did get better after the RAD was done, but we were told not to worry. Everything was fine. Some people take longer to heal, etc., etc., etc. Looking back, it was basically a bunch of crap. That's why I say question everything. If something just doesn't seem right, ask and push and DEMAND an answer!

Brian,

I would very much appreciate any input you may have. I am especially interested in any clinical trials or new treatments that you feel have shown promise for recurrent cancer. For instance, any thoughts on photodynamic therapy? I just read a recent report that sounds promising. Heather's biopsy shows an oropharyngeal tumor. I don't have all the details yet, but it looks like it was probably growing while she was still having RAD. Maybe it was there all along and was just missed. Maybe the RAD made it grow faster. I don't know. What I do know is that the "gold standard" of surgery and radiation has failed. She now will need some type of chemo. It really sucks because she was willing to have chemo with her RAD, but was discouraged from doing so. Now chemo may be her only hope. The surgeon will do more testing, but, at this point, he feels surgery is not a viable option. Her chances are very slim, but we're not going down without a fight. And if chemo fails, we will turn to nutritional therapy or some other non-traditional therapy.


Everyone else,

I appreciate all the well wishes and support, but what I really need right now is information. Anyone that has a success story with alternative therapies. Any good web sites or organizations that go beyond the traditional surgery/RAD/chemo. Any little tidbit about anything you've heard or read that sounds good. I'll take any shred of hope anyone has to offer right now. I'll feed her carrot juice until she's orange if it will help (don't laugh, my Mom has a neighbor who is doing that for breast cancer and while it may not effect a cure, it does seem to be helping!) Anyway, you get the point. Flood me with information!

Rainbows & hugs to you all,
Rosie

Rosie,

There was never a thought about you taking my post.You actually snapped me out of it. I wish I had more input to help you and your daughter.I hope someone has . Your one strong women and no matter what your daughter and granddaughter will have more than most. A woman who is capable of giving such great love.I'll say a prayer for all of you and keep my eyes and ears open for any info.
Take Care
Diane

Hi Diane,
I was a caregiver for my father when he had terminal lymphoma and it was one of the most difficult seasons in my life. I spent a year in therapy over it. Now I am a cancer patient myself and my wife started therapy today. A big part of this disease is that is simply overloads everything, whether you are the patient or the caregiver and it's very stealthy the way it does it. I have learned to cope by staying in the "now" and trying to avoid thinking about the future. And like Joanna said, you need to take a little time for yourself each day also. Caregiver support groups can be helpful also.

Hi Gary,
You now have first hand knowledge of both sides which is very unfortunate indead. The only benifit to this is you are aware of how your wife feels. I agree with staying in the now and try to do that. I wish you both the best in this very trying time. This is a great place to vent and move on. For that I am very grateful to you all.
I work in a psych hospital and believe it or not talking to people with problems helps me forget mine and when I get home I'm kinda talked out. My situation here hasn't improved my husband is trying very hard and most of the time so am I . I just had a need to vent moment when I posted and just typing it was a release. I don't gaurentee I won't have another one but I know where to find some great people. Again thanks to all of you for your support. I hopeI can be there for anyone when they need it too.
Take Care
Diane

Hi Diane,
It's probably payback for what a lousy caregiver I was! LOL I am still pretty hard on my wife some times, especially when I am in pain or sick (which is a fair amount these days). It's a hard thing for both parties. I was looking for this big turning point when I finished radiation and it's actually worse!

Hi Rosie,
Sorry, I just saw your post from Mar 19th about Heather's reoccurence and your call for help. I'm curious. What would the surgery involve and why did they say no surgery? Too soon after radiation? How big is this tumor and what stage is it? If it is early, could it possibly be removed by laser? They use this for the larynx, don't know if it can be used for the oropharynx.

As of two years ago, there were only two doctors in this country that did this procedure to save the larynx. One at Univeristy of Pa in Phila. and the other at the Mayo clinic in Jacksonville, Fla. The procedure had been developed in Germany so lots of drs. over there do it. At that time only Mayo did the procedure on patients that had radiation. U of P agreed to do it on me but then found they couldn't get a safe margin. If you need Dr. name, email me at office.