Hello, my friends.
I have been missing everyone - just too drained to spend any time here. I might catch a minute to read a new post or two, but I have had no energy to respond.
Tom took a bad turn last week - extremely weak/constant vomiting/horrid constipation despite ALL efforts. He had trouble walking, meds were messing with his mind and causing him to twitch. All in all, it has been a very bad time. He's in for daily fluid/med infusions along with the radiation - - and we have ONLY 2 DAYS left of the radiation! I can't wait to NOT drive to UVA, despite the lovely display of turning foliage on the way down!
He will more than likely continue to need fluids, but we can do that locally.
During the past 2 days he has begun to 'eat' again. We are up to 4 cans of Jevity a day...sometime he can't keep them down, but at least he has the willingness to try! His weight is down to 128, his color is horrible, and he looks about 15 years older than he did this summer. I have moments of total sadness come over me...........and then I remember how wonderful it will be when he is well again.

We are planning on a week of R&R at my brother's NC beach house.......just the change of venue will be awesome.

Love you all......never a day goes by that I'm not thinking of you and praying for your collective good health...special prayers for those of you in 'immediate' situations!
Nicki

Nicki,

I'm so glad you can finally see this painful process coming to an end. It's great that Tom is still pushing to get food into his system -- this is about the worst time in the whole treatment cycle to try to do that, but it's essential to keep at it, even when it's excruciating.

I wholeheartedly recommend the R&R plan -- about 5 weeks after I finished radiation, my husband and I took a little trip along the Maine coast and into New Hampshire during foliage season, and it was a great way to start purging the memories of the radiation room.

More prayers coming your way.

Cathy

Wow, Nicki, almost the end of treatment!! Yeah!! Tom will probably still pretty rough for a while, but after a few weeks you both will begin to see a light at the end of the treatment tunnel! You guys have been in my prayers and Nicki, I know what you are going thru as a caregiver. Every little ache and pain (especially around the mouth area) sends me into a tailspin and every month right before his checkups/tests, I get a bit nuts!! I am beginning to think this is my life from now on and some days it's hard to swallow. Then I realize all the cutting, pain and treatments Dan has gone thru and realize he handles it all so well.
God bless,
Debbie

Ladies, you have been such a big help through this!
I had hardly finished my post when I could hear Tom having problems. He had gotten sick as soon as he put some water in the feeding tube along with some liquid Colace. Unfortunately, the actions were violent enough to cause the stopper on the PEG to 'blow off.' Poor guy... how miserable he is, but he is being sooo good about it all. My heart does break and every time I hear anything when I'm not in the room with him, I drop everything to see if he needs me. I could never be a nurse!
I was getting really scared when he'd start talking about weird things.....I asked him one morning how he was feeling, and he kind of looked past me and said, "The pages are turning." He also said something about having enough "British pounds to pay for it." Never did find out what 'it' was, and why we needed pounds! I think it was the Roxicet that he was taking for the break-through pain causing the fuzzy brain.

I'm sure I'm not the only one who has totally lost track of time - can't believe October is almost gone! I generally have most all of my Christmas shopping done by now........but this won't be a regular Christmas, will it? I do believe I'll have everyone who wants to give us gifts make a donation to this foundation!

Thanks for your support I think I'll go to bed now - - tomorrow will be here too soon.
Nicki

Nicki,

You bring up a point that I've also been thinking about (asking friends/family to make donations to OCF as a holiday gift). I'll set up a post under that heading to try to get it out there.

Cathy

Hi Nicki,

Congrats on Tom's progress! Sorry to hear about the side effects though. It is very important that you both realize that it will take time to feel better. I made the mistake of thinking that once it was over it was over. Boy was I wrong! I stopped fluid iv's and had my port removed against my doctors advise and it almost killed me.
Dehydration and infection are the two most critical issues you guys face now. keep in mind that he will not start feeling better for a little while yet. New years is my guess. He is my age (40-42) if I am not mistaken. I am not trying to bring you down, I just want you to understand what I didnt. The real frustration for me was the good days and bad days. He will start to have real good days and think he is out of the woods and then bam, he will have two or three bad days. That had to be the worst parts for me. I am a very impatient type "A" person.

Please dont hesitate to call or write Christine or myself if you have any questions.

Take it easy,
Robert,Christine,Alison,Robby,Tommy,Billy,and Scott Hamilton

Dear Nicki
Well you are nearly there...keep the mind on that vacation because you surely deserve it. What a great idea about donations as Xmas gifts.You already have your Christmas gift dont you!
Ditto what Robert is telling you about dehydration and infection..sooo important.
Lots of love and good wishes to you and your family.
Marica

Nicki,

I am so excited to hear Tom is nearing the end of this wild ride! As I read your posts, I vividly remember those days well. I was hospitalized with strange funal infections and other infections. I remember one time they put me on morphine and as always, I start babbling and rambling incoherently and as soon as I said something totally ridiculous, I realized I was on morphine and the nonsensical statement was understood as such by me. Kind of a snap back to reality with a little smile and giggle thrown in. I kept myself entertained for hours when I was alone .

At this point in my treatment, I was up to 3 bags of fluid a day and it went on for about 4 months though my port. Sad to say, I was "happy" when I felt like I had only aged 10 years.

Things will get a little rougher for a few days and then before you know it, the good days will happen more often and the bad days will just drop by unannounced every now and then.

You are a dear! Tom is so fortunate his "nurse" is close by. I hope you are getting plenty of rest.

Ed

Hi Nicki,
Eds post made me think back to my last few days of radiation and the period after it was over. I remember being SO excited and happy that the daily treatments were over. I also remember how dissapointed I was when, a week later, I truly didn't feel ANY better, in fact felt a little worse. Be prepared for this with Tom. It's such an emotional let down when we expect our situation to improve overnight and it does not. Measure improvement by weeks, rather then by days, it will help. It was the BEST advice I got from this board.
Also, be prepared for Tom and possibly yourself to feel some depression now that treatments are over. During treatment we feel as if we are doing something to battle the cancer. After treatment we can feel helpless and as if we are doing nothing. Depression can set in and is tough to deal with.
I hope that you both breeze through the next few months and that by Christmas Tom is feeling like Santa himself.
Love,
Minnie