You deserve the break! How did your neck dissection go way back in the beginning? My dad is getting his November 10-any words to pass to him?

Hi Shawna...

2 tips)

1) Tell him it's not as bad as he thinks...

2) Ask the Dr. if there's anyway you can meet a recent patient to discuss their experience.

Is he having anything removed inside his mouth or throat? (Like I had my tonsil removed).

Hi Michael,
Glad to hear you are doing well. A vacation from the board is allowed, but only if you warn us in advance. You had us (or at least me) all worried.

Actually a real vacation is a very good idea when you are feeling up to it. My husband and I went to St. Kitts 5 months after my treatments and it did me a world of good. Let me know I could still do things I loved, like travel, even if I coulndn't eat everything. It was a great 'pick me up'.

Do you have the Inn open again already? Sounds like your energy level has improved immensely. Hope you get to do some fun things in NYC this time and get them to give a name of a West Coast doctor you can see when there is a problem.

Take care,
Eileen

Michael, thanks so much for checking in, your post sounds like you are in much better spirits, which is awesome news...I will be praying for your appt on 11/10, (I have one that day myself, so we will be nervous together), I don't think the fear of c ever goes completely away....Give my best to Seth...Love, Carol

Hi again Shawna, I got your personal note, and thought I'd reply here to benefit anyone else in the same circumstance.

First of all, if your Dad'd primary was the tonsil, then they likely blasted the heck out of the site with the radiation, so I wouldn't worry too much about second guessing the Drs on that one.

Second, what your Dad has been through already, (I think) is much worse than the surgery.

In fact, the MRND for me was one of the least horrible parts of this journey.

I've emailed you some pictures of before, during, and after, then now. This may help address cosmetic concerns.

It's not as bad as it seems.

I asked Seth to email you tips on coping during these stressful moments...I've told you before what an angel you are, and how lucky your Dad is to have you at his side..Be strong. He'll get through this next step, you'll see.

Hugs to you both -- Michael

Michael,

So happy to hear you are feeling better. I remember posting probably just over a year ago "When will I stop thinking about my moms cancer every few minutes of the day"? I'm happy to say that now I go at least a day or two without even thinking about it. I'm sure she is still reminded all the time but pretty soon it will consume you less and less. My mom was realy funny and didn't want to shop for herself or anything for a period of time after treatment but now she freely buys stuff for herself.
I'm so glad to have my mom back and I'm really excited that you sound so much better!

Hugs,
Dani

That's interesting about shopping...It is (was?) one of my many vices...

The last few months I didn't want to buy anything like shoes or clothes for myself.

But, the last week I've started to make up for lost time

We went to Costco yesterday (3 hours each way!) and I just HAD to get some stuff

Glad your Mom is well...I hope to follow in her footsteps (with my new shoes!)

Thats the kind of shopping I mean. We would always shop together for clothes etc and I would find that when we went out she wouldn't want to buy anything for herself. My mom was convinced she was going to die. Everytime something strange came up in her mouth (which happened a lot) she thought it was another recurrance and would keep thinking that it was all over. Everytime her doctor checked her out and said everything was ok then she would go for a little while longer thinking everything was ok and then something else would happen and we were back to square one. Now its been almost six months with nothing strange going on and shes really starting to relax again. Life is good and we really appreciate everyday.

Costco is one of my favorite stores too...definately worth the 3 hour drive! Things will really start getting better for you everyday just keep up the positive attitude!

Dani

I had the same feeling about shopping for clothes for quite awhile after the end of treatment. I kept thinking that I might not be around long enough to get much use out of them, so what was the point. It took quite a few of those "all clear" followups to get me to change my outlook.

Cathy

Hi everyone!!

I am getting ready to leave for NY on Weds to meet with the Drs at Sloan.

I am very nervous, it's my first "check-up"... Many of you know I have had a 'sore throat' for a few days, and although it's getting better, it worries me that it's a recurrance (or maybe they didn't get it all the first time)???

It seems to be in the same place as the original site (the same feeling type of pain I had starting a couple of days before my MRND/Tonsilectomy, that had me concerned back in June)...

AND, I'm having a pain in my scalp. It seems to cause a headache once in a while too. I think it is related to the surgery and most likely is some muscle thingy, likely from the radiation, surgery etc. My worry is brain cancer..

And, I still have ear ringing that is occassionally floating between both ears, it seems associated with a "pop" kinda like you get in an airplane. Almost like my ears are stuffed up once in a while. Not horrible, and seems to be slowly and continually getting better.

Next, my original incision lines were basically 99% healed up 6 weeks after surgery when I started radiation...I don't know if this is normal, but a small section along the original scar lines has scabbed over following the radiation and puss a little, and even one of the sites where a drain tube was put in after srugery for a couple of days has scabbed over...I 'accidentally' itch them once in a while, and they don't really bleed, but certainly are not healed over 100% anymore. Has anyone ever heard of anything like this? I remember the RO saying something like..."Oh, your incisions have healed over nicely", on my first visit with her and then something like..."They won't be quite as healed after radiation"...I'm totally paraphrasing, but I remember something along these lines. Sounds crazy?

Finally, I have a sore back once in a while, and of course, I am worried it has moved to my lungs.

OK, but I don't dwell on these things all the time, but they are a concern...

NOW for the good parts:

1) I have returned 95% to my 'normal' eating!!!! I have had several normal (almost) sized portions of meals...The only thing is my taste buds are only about 65% of normal...(I tried some hot sauce today OOPS, not quite there yet!!!

2) I haven't had ANY meds at all (except for an occassional Rolaids:) no pain meds, no anti-emetics nothing...

3) I haven't had to use my PEG tube in about 2 1/2 weeks either. (I still take some Gatoraid once in a while to keep it flushed)

4) I haven't had to spit extra saliva in about 10 days...I used to spit into kleenex dozens of times an hour...I used to have to wake up a few times throughout the night to spit up the saliva. AND, I don't have to sip water to keep my mouth from being dry...In other words, I am almost back to normal, maybe 90%!!

5) My energy level is almost 90% back to normal...I am working nearly my pre-treatment 12 hour day and sleep well at night too.

6) My smile is almost 100% back to pre-srugery normal, and I can open my mouth as much as I could before the radiation now.

Anyway, I wanted to let people know what the latest is, and that there is hope for many of us who go through the hell of radiation and chemo (did I mention the surgery:) ? And that I am not unhappy with the side-effects as of today...

NOW, we just have to keep me cancer free...I am living everyday scared to death of my recurrance!!!

How do you all deal with this?

I keep saying that everyday I wake up is another day I stole from the cancer, and that everyday I survive is another day farther from having it come back...BUT, it's hard to stay hopeful. 5 years seems like an eternity away.

I am scared to death of my first check up...

By the way, I read the following today, from the FALL 2005 issue of "CURE" magazine (pg 47) excerpt below:

"Other treatments are being tested to prevent recurrence and/or second primary cancer. In a recent issue of the Archives of Otolaryngology-Head and Neck Surgery, Dr. Shin and Barbara A. Murphy, MD, associate professor of medicine and director of the H&N Oncology Program at Vanderbilt-Ingram Cancer Center in Nashville, and colleagues published results of a phase II study combining isotretinoin, interferon-alpha and vitamin E as bioadjuvant therapy after definitive local therapy.

"In this study, we report the long-term (49.4 month median) follow-up from our previous chemoprevention trial using these substances," says Dr Shin. "Among the 45 patients with stage 3 & 4 squamous cell carcinoma of the head and neck treated under the protocol, 80 percent experienced progression-free survival for at least five years. These results are significantly better than the historical five-year overall survival of about 40 percent.

We conclude that bioadjuvant combination is highly effective in preventing recurrance or second primary cancer."...."

So, I thought that was interesting and gives hope with an 80% 5 year survival rate!! Anyway, take it for what it's worth...

(Just wanted to add to the Vitamin E debate, hee hee