You are all too wonderful! I was so happy to wake this morning and see that Tom's color was much better than it had been, and his eyes sparkled! He said he thought he was feeling better, and even ordered up a 'real' breakfast.
I went off to work in a happy mood - - - later, my daughter called to say he was vomiting, so that euphoria was short-lived. I did get him up for his bloodwork, but he's feeling very puny now, so I think I'll stay home the rest of the day. I'm wondering if the anti-nausea meds are somehow not working well with his system - - or maybe the Xeloda is just working so well on those nasty cancer cells that it is just draining him. WE really didn't expect this much this soon into treatment. I know everyone is different.........
On the positive side of things, we ARE planning ahead! He has realized that he CAN take an extended vacation! Although this one is being forced upon him, he knows now that we'll be able to leave the landscape company "on its own" in the future and take those trips we always talk about! We have a reputation for throwing really great parties, but for the past 2 years we've put those off because of new grandchildren. Our next party will be the biggest one ever.....!! I don't doubt we'll spend $3K on fireworks alone when this is all done!
Eric, I had noticed that your original treatment did not include chemo.....Tom's surgeon, after doing the biopsies and tonsillectomy when looking for the primary site, had said radiation would be the next step. It was the radiation guy who strongly suggested adding chemo to the mix in hopes of finding any hidden dangers. We are certainly praying that is what is happening here.
The tumor in his neck is DEFINATELY smaller! That has to be good news!
God is good. Thank you all - may your day be filled with blessings.
Nicki

oops - my husband logged in & it sent under his login
so mine is below

Nicki,

With my husband's constipation we were told not to do the fiber until after he was was unstopped, then he could increase the fiber. To get over this round he did an oil based enema to soften & then one to get it out - you can get them over the counter. They worked well - I can't remember the exact names as we are not at home - but do have extras on hand.

That & prayer (from just about everyone we know & those that they know) & digging in deeper to God & pain meds got us thru.

May you draw nearer during this time & you will need lots of patience & stamina!! May God give you what you need.

Pam Lusk

Nicki,
I agree with much of what Eric told you although I am not the prayerful type. Unfortunately the worst time for a lot of us came soon after we finished the radiation treatments. It is a long road and requires patience, but things do get better. I went from around 170 lbs. to around 150 lbs. and did have a PEG tube. Although my treatments ended almost two years ago, I don't swallow as well as I would like, but I do get enough down me that I am now back to my original weight. Once I got back up to around 165, I was enjoying being more slender, but now I am back a little over 170lbs. and the waists in my pants are getting tight again. So, things do get better...it just takes time.

I too started out thinking I was bulletproof, but the results of six weeks of radiation along with chemo brought me lots of humility. I do have once recommendation. I used to take a nice long walk every day, especially when treatment ended and I found myself getting depressed. It really helped.

Best wishes,
Danny G.

Well, this has been the longest week of our lives, I do believe! Seems like ages ago we walked into that infusion center. I am happy to say that Tom seems MUCH better this evening after a rocky day. At one point today, although I knew he was feeling weary, I forced him to get up and DO SOMETHING. I didn't like him just sitting in the chair staring into space. While I do believe private time spent in prayer or meditation is valuable, I thought he'd been idle long enough. Seems my actions were heeded! He moved his (small) butt and got a few things done. He even ate a decent dinner I'm anxious to hear the results of his blood test. Eric, you've already been through so much! Your outlook, and those of others posting here, is the best medicine. I am in awe of all of you who have faced this monster down - and have had to see it again!
I am going to bed tonight feeling lighter than I have in a week thanks to all of you. Danny, I'm so happy to know that you've put on your weight. One thing I can already tell is that Tom is a bit self conscious about being as thin as he is already. He has dropped from 157 to 143 since the tonsillectomy/biopsies on July 17. It seems his appetite is improving a bit (maybe he's adjusting to that Xeloda), so I'll do all I can to pack good things into him in the next 2 weeks before they hit him again.
Good night, all.
God is good.

I liked the part of about the T-shirt, and am glad to hear that he is doing so well early on in the game. While it does get worse, it is doable. I can hardly believe the wealth of good information that you have gotten here as I read through all these posts. A couple of years ago, I was putting most of them up myself, and now finally the torch has passed to a LARGE community of generous survivors who offer their experiences. On the note of T-shirts, take a look in the OCF products store for one that may fit his personality to a T, (no pun intended) and may brighten up one of his down days as a surprise. Keep fighting the good fight...

Hi, Everyone!
MUCH better day at our household! Got home to find Tom up and about, working on the computer...and he had eaten almost all I had asked him to eat during the day. He was down to 140 this morning, and I'm very concerned. He did, unfortunately, throw his back out a bit while being sick the other day, so that is a (real) added pain, but he's working through that.
We are expecting a weekend of rain here in Virginia.....maybe we'll get out the RISK game and get out some tension! Oh, wait, that usually ADDS tension!
I can tell he is feeling better because the feisty streak was evident when the rain hampered the satellite connection! Made me smile!!!

Thanks for your post, Brian. I took Helen.c's advice and began looking at old posts. I came across one you had written which truly moved me and again I was thankful for people like you who change personal adversity into something wonderful for others. In return, I do hope you know how much you are appreciated. I've searched the web, and this is, by far, the best site I've found.
OK - because you don't know my funny family, I'll tell you a little story...
One Christmas, my grown son "won" a gag gift - one of those singing "Billy Bass" things. He tried to leave it at our home, but we snuck it into his suitcase when he left. Since then (5 years!), we've played "Hide Billy" whenever we visit each other. After last Christmas, I found him, wrapped in foil and labeled, in my freezer He's been hidden in the spare tire well of the truck, under pool table covers, in the saddlebags on Tom's Harley....sooooooo, when Tom is being set up with his first chemo infusion, a patient advocate comes into our room and asks, "Are you Tom? I have a special delivery for you." And she produces Billy Bass, all the way from Georgia! Needless to say, everyone had a good laugh - Tom was near tears and laughing all at the same time. Certainly helped me get through that tough day! Laughter is the best medicine, and I'll have to look for another good t-shirt for 'those days.'
We are both looking towards a good two weeks, and then we'll hit this again. I LOVE how the tumor has shrunk - good sign, yes????
Big hug to all of you!
Nicki

Ruh-roh, everybody check your bags before you leave Vegas!

Hmmmm-gives me a good idea of what to do with the salmon I'm bringing down for the raffle!!

Hey Nicki,
God bless you and your husband. We felt the same way last year...never any real health issues until Dan got cancer. It's weird what you don't realize is something to get checked. He had a sore on his tongue for months and months before he got it checked and then it took a few more months to get passed to the right people to get the right diagnosis! Dan lost about 50 lbs, and definitely the PEG was needed. He had about 6 weeks that he couldn't even talk at all. He used the PEG starting the 3rd week of rad/chemo and used it for 5 months. He couldn't swallow anything, not even water for quite a while. He had some major constipation problems due to his narcotics. We got help for that but wished we had gotton help ahead of time. Ask for prescription drugs for constipation...it's the only thing that worked for Dan. I also had to get some help for anxiety and sleeplessness. I took Xanax for anxiety and Ambien to sleep at nite. Both helped me so much. We had a great support system thru our church and Bible study, which was truly from God. My prayers are with you as you begin this journey. I always felt God walking beside me thru it all...it was (and still is) very hard, but you can do it!
Deb