hey there Nicki,

my recall sometimes is short. to refresh things i used the 'search' feature (which is at the top of the page). key word 'Lynn'. it returned many posting from Lynn, and i read several of them again. she was a very special person and her character comes thru clearly in the email she sent. i think reading her posts can calm many fears.

best wishes,
larryb

Nicki -

It surprised me how little "outsiders" could understand what I was going through. Everyone here always says "welcome to the club no one wants to join", but it certainly is a club and thank God (or whomever) we're here for one another.

I was no exception to the shock and sadness felt from Lynn's passing. The frustration certainly continues to build with each new diagnoses. All I can offer you is my love and support. It is a hard road, and it certainly could be more enjoyable, but you will get to the end of this road. Just think - once you're there, there will be many side roads to take for the rest of your lives.

Wishing you and Tom well,
Sabrina

It has been a beautiful day here in Virginia, and Tom improved much today. We just came in from our evening prayers - and watering the BOOMING pink roses! I like to think that each bloom is a new prayer for all of you here.
Thank you for the 'pep talks!' Danny, thank you for Lynn's photo - it helped a lot because I focus so much better when I can 'see.' Larry, I took your advice and did a search for 'Lynn,' and I can read that she was a strong woman with a lot to give. I am finding my way around this amazing website slowly but surely - - and discovering so much important information along the way. Whoever is responsible for designing this site should win an award!
It is interesting that I seem to make it through my 'normal' day pretty well, and although Tom is never out of my mind, I can focus pretty well on my work until someone asks me "How is he doing?"
I do, honestly, keep very upbeat, and I try very hard to impress on anyone who will listen how important it is to be ever watchful for changes in their mouths, throat, neck.....
I was, I guess, noticeably disturbed the morning after I read about Lynn's passing. A friend asked what was wrong, and I said how devastatingly horrible it was to think that so young a woman would die from this - and that it scared me for all of you - and for Tom. She suggested that I NOT VISIT THIS SITE. I promptly told her that this site has become my lifeline and a pillar of my support system
Couldn't leave you all if I tried! And this after only 'knowing' you all for a month!
BTW - I found an herbal sleep aid that is wonderful! Called Deep Sleep.....what a relief! I've actually been able to sleep for more than 2 hours at a time!!
Love and prayers for all of you.
Nicki

Nicki,

As the "culprit" of conveying the news of Lynn's passing I have to admit it was one of the tougher tasks I can remember in my 48+ years of life. All of us have joined OCF at the time of someone passing. There have been many in the past year for me and I feel like a piece of my heart is ripped out with each one. In the case of Lynn it was very hard partly because I had spoken with her on the phone, emailed/private messaged her often and met all of her family. At her services I fully realized the greatness she humbly achieved in this life and the glory ahead of her as her just reward. When we all met for lunch during the last weeks I saw the sadness in her oldest daughter's eyes and remembered Lynn saying how much time she spent away from her family while she was at MD Anderson and how she would not leave them this time.

You will experience many emotions on this wild ride you have embarked on. Do not waste a single moment worrying if you can. Enjoy every day to the fullest because you will never have that day to live over (unless you are Bill Murray in Groundhog Day).

The absolute greatest thing about this website and especially this forum is that all of us have the strongest bond I have ever experienced. Just as DaniJams and Sabrina expressed, WE HAVE BEEN THERE (and back!). It is so wonderful to be able to ask someone if they, too, are experiencing something so quirky that you are embarassed to ask the doctor. I think of Sabrina's quiver in her liver (or butt, as the case may be) here but you can substitute many things in place of that event. Almost all of us have either had someone like you by our side or been someone like you by a loved one's side.

I hope we can all do something to help you and Tom through this.

And by the way, this site has won an award, thanks to Brian!

Ed

Thanks, Ed. How sorry I am that Tom and I can't be in Las Vegas to meet all of you. He HAD actually planned to take us there for our Sept. 11th anniversary (33 years ), but this stuff got in the way. I've never been - he goes in January for the Builder's Assn. trade show - and he thinks I'd get a kick out of hotel architecture/design.
What date will you all be there? Which hotel?

This has been a better day for Tom, although he has a big question for all of you - - is the radiation treatment going to make him nauseous - or just ruin his throat? His system is not handling the chemo drugs very well and he seems to be in a perpetual state of
'ready to vomit.' He's getting apprehensive about what to expect when the radiation begins next week. He's also not sure he wants to know!

(I KNEW this was a good website! )
Nicki

Hi Nicki,

If you haven't emailed me a photo of Tom & You , could you please? You can attach it to an email and I will include it in the photo album of those who can't make the reunion. The dates are Sept 25th & 26th at the Imperial palace in Las Vages.
If you sent a photo already please forgive me, This chemo is not helping my memory at all.

Your friend has no idea how important this website is to us. The value it offers is immeasurable!! It is that HUGE to us. To be able to relate to people going thru the same thing as you is so different than talking to friends and relatives.
Without knowing it you have become a valauble member of this forum. Your honesty and caring shine through in your postings.
We are lucky to have you as a member.


Best Wishes to you & Tom.

Danny Boy

[email protected]

Hi Nicki, I can relate to being in a state of "ready to vomit." I've been there all week after my chemo treatment on Monday. It's just now subsiding today... It seems like I actually do better when I can get something on my stomach, but then there's the challenge -- getting something down in the first place...

Anyway, the radiation is pretty rough for most if they do it to the mouth, but it's not undoable. A lot of us, including me, have been through it and have lived to tell about it. I was eating pretty normally a couple months after I was done... Fortunately, the effects don't come on you right at first and you have a few weeks (usually) to "belly up to the buffet" and get in good nutrition before it gets too rough...

Make sure to get paid meds lined up ahead of time (before Tom needs them) and as soon as he starts taking any of them, take countermeasures for constipation -- that was actually one of the toughest things for me. I've never whimpered more in my life than a couple of instances in December and January when the system got stopped up... Whew... IT could have been prevented if someone would have told me to stay on top of it...

We're always here if you need it... Best wishes to you both!!

Nickie,

I know everyone is different but I think the consensus is that radiation is very tolerable until the latter part of treatment. In my case, the last two weeks and several months afterwards were the pits. A general rule is one month of recovery for each week of radiation. Chemo seems to hit hard and first and not last long. I don't feel the Cisplatin was as bad as my other (5FU). I'm afraid I can't help on the nausea since I never found the right combination even though I tried about everything known to man. I did not mix the emetics with steroids since I usually have a very bad reaction to dexamethasone. I was told the combination would prevent all of my nausea.

This will be my first trip to Vegas and I am looking forward to it.

Ed

Nicki,

Heather had plenty of nausea, but NOT from the radiation. I don't think Tom has to worry too much about that.

Since AzTarHeel mentioned it, I would like to add a side note on the constipation issue. Heather also had a lot of trouble, probably more than most because being bedridden for so long, she couldn't get even a modicum of exercise to help keep things moving.

Anyway, you have to discard the normal advice about laxatives being potentially harmful if taken for too long. Finally, after months of trouble, a pharmacist told me the key was to take Senekot-S DAILY. In Heather's case, TWICE DAILY. Don't be like me and think that after a few good days, you should give your body a rest and skip a day or two. The constipation comes back with a vengeance!

The Senekot-S or similar remedies MUST be taken EVERY day, WITHOUT FAIL! Of course, with a prescription med, one must follow the instructions. But as long as you are on a heavy duty pain med daily, you must also take an anti-constipation measure DAILY.

Rainbows & hugs,
Rosie

Senakot is really a natural stool softner versus a laxative and I don't believe it would be harmful like some of the more violent stuff like epsom salts that just flushes the entire system out and takes all of the fluids with it.

I took Senakot S 2 pills twice a day after "giving birth" one day. Even the slightest hint of constipation still and I take 2 a day or 2 at once. Anything that hurt as bad as that one memorable day will be avoided the rest of the days of my life...so help me God!

Thanks for reminding me Rosie!

Ed