Hi Brian:

This is actually Kim but somehow I got logged in this way today-hmmm...maybe there are not accidents and it's a team sign. Your most recent reply is stirring and I need to share with with Dave and ponder the thoughts you share. Thanks for being so "out there" with the emotional piece of the puzzle. I have more to say but want to get a chance to let your words sink in first-they feel very healing.

Kim

To Dave and Kim, Brian's message is right on. I also had a modified radical neck dissection and still do not have any feeling in that side of my neck. It will be two years on September 12th and even though I am physically healthy, I'm having a hard time recovering mentally. In fact I just admitted this past June that I was still depressed and suffering. Everyone thought I was doing so well, but I found that I was more and more internalizing my situation. Trying to make the world think that all was okay. Well it isn't. I still can get it through my thick skull that things will never be the same again. My tongue won't grow back and it will continue to hurt daily, my neck will always be numb, the scars won't go away and my tongue will forever be sewn to the bottom of my mouth. This site has in many ways been a very good outlet for me. I have admitted things openly that I would not do otherwise with my family and friends. Good luck with your surgery and you will be on the minds of all that particpate in this site. Take care and keep us posted. Anne.

Dave C, here is a small hope. I had a right side modified neck dissection, with accompanying swelling and numbness, but 4 months later, a lot of feeling is returning. I remember the lead surgeon telling me when I was drugged up, something about transplanting or reattaching a nerve and it would take about six months to start working. Perhaps this is something new that is now being done, because there is definite feeling where there was none at all a couple of months ago. Being able to feel my ear makes pierced earrings so much easier (grin). You might ask your surgeon about this (the nerves, not the earrings).

Joanna

Dave C & Kim,

I too had the radical neck dissection...then on to 8 weeks of radiation. The swelling is still there somewhat; but has lessened and as Brian said, the fluid finds other places to go after I get up in the morning. Feeling is starting to return to the neck, ear, and shoulder. Just started massage a couple of months ago because the PT who is working on the trismus (not the doctor, who said "oh that will go away") has incorporated that into my sessions. The waddle - well I'd like to think it has gone down, and really it has, but probably my vanity will say it's never enough. Don't have to worry about the shaving thing, but I have a closet full of turtle necks that we'll see if I can wear this winter. Take care,
Dinah

Hi Dinah:
Thanks for valuable input, and I know lots of people who have a "waddle" who don't even have surgery to thank for it so at least you have an excuse.

Okay, so Dave and I have both lived in Texas recently (Houston & Galveston) and are still long distance doctoral students at UTMB at Galveston. Where are you? Turtlenecks in Texas? A foreign concept to a New Englander but I always got a chuckle there when 60 degree weather brought out parkas and mittens.

Hope this day finds you feeling well...
Best, Kim

Hey Kim,

From one of the parkas & mittens people: "I represent that." I just thought I got cold easily before radiation ...after well, I carry a sweater with me everywhere. Restaurants show no mercy.
My other excuse is that I'm a traveling salesman and I travel to places that do have a real winter.

You guys take care & keep us posted.
Dinah

Five years ago I had an unknown primary that metastasized into one lymph node in the neck, had neck disecction and 36 treatments of radiation. Last year, they found a tiny tumor on my voice box in the only spot they couldn't get a laser, (can't do radiation, can only do that once), with no metastatis. This one cost me my voice box, gave me a permanent trach and a neck dissection on the other side. For what it worth, I have virtually no scars left from either neck dissection, so it is not always horrible. Anyway here are few things to remember and/or ask doctors about.

Surgery:
1. Make certain that you are in a comfortable position on the operating table. These are long procedures. The first time I wasn't and had back pain for months. The second time they forgot to put the kidney board in the table. If I hadn't complained, I would have had trouble again.
2. After surgery, be certain to support arm on side with neck dissection. Hold with other arm when walking. I supported with a stuffed bear my niece gave to me when I was in bed, riding in car, or sitting. Keeps the drag from the neck. Also prevents pulling in back. Also don't lift anything. I bought a 3/4 lb peach and carried it 5 blocks and paid for it for months. Keep the arm supported for several weeks until you can walk comfortably without feeling like it is going to fall out. Also don't go back to work too soon after surgery. First time I went in 10 days and pulled arm out of wack. Second time I took 8 weeks and had no problem.
3. Get Physical Therapy from a good head and neck man. Helps to prevent scarring and helps head and neck movement. Hopefully they will not have to cut any arm muscle or nerves. Ask them.
4. Don't let them remove any saliva glands unless it is absolutely necesssary. My first doctor did because he said they wouldn't work after radiation so why not. Well the ones I have do work, just not as efficiently as before. Second doctor left saliva gland. Unfortunately I couldn't talk him out of taking half of thyroid and parathyroid. I should have been more adamant about it. Now I'm on thyroid meds because second side didn't kick in because of the radiation. Don't think they have any reason to go after your thyroid but I'd ask. For some thyroid meds are no problem, for others it takes forever to get us back to normal.
5. I used BIAFINE cream on the scars to help healling. This seems to work just fine. I also had mostly stitches, not clamps. I told both doctors that I didn't do scars. The one I had last year, you can't even find the cut.

Radiation:
1. Again BIAFINE. They didn't give it to me until I was so burnt I couldn't turn my head. When reading the instructions, it said to start using before radiation to help prevent burning. Now they tell me. Ask about it, but I would use it on surgery anyway. Much better than the AQUAPHOR they gave me.
2. They may want to remove teeth before radiation. They took 16 from me including some perfectly good ones. Both my periodontist and the cancer specialist who finally made me teeth, say from the xrays they saw, there was no reason to remove those teeth. Get a second opinion if you have any doubts about whether teeth need to be removed. Soemtimes they is trouble with the gums after the radiation so they can;t make you false teeth. I had to wait a year and half. Should have kept my own.
3. Don't know what type of radiation you are having, but you can only have it to an area once. Can they limit the area they are radiating. With my unknown primary they fried me from the tops of my ears to my armpits. Reaosn I now have a trach rather than just having radiation on tiny tumor.
4. Can they avoid radiating your saliva glands or put stents over them?
5. Are they going to give you Salagen or some other drug to help saliva? You should take something.
6. Make sure you get some execise. I froze from 9th treatment on and went to bed for 18 to 20 hours a day until it was over. Lost all the muscle tone in my legs and will never get it back to where it was. Don't do that. It will be fall - go take nice walks.
6. They burnt my tongue so badly I couldn't drink bottled water much less eat anything else but ENSURE. After they burnt it, they decided to give me a stent for my tongue. Don't know if you can get one since part of your problem is in that area.
7. Got thrush so badly that it took 6 months and steroids to clear it. Don't know how to prevent this, but ask.
8. Go to periodontist every two weeks to keep teeth clean during radiation period.

The thing I would stress most is saving the saliva glands because this is what will affect you most for the rest of your life. I would also try to find a pen pal on the internet who went through this recently that you can ask questions.
It makes you feel like your're not allone. The one I found, I'm still friendly with. I'd volunteer but will be Europe for a month while you are going through this (you see they is life after radiation). Also there is an organization called SPOHNC that has a good newsletter and some support groups. They are on the web also.

Best of luck to you and we're all rooting for you.

I just completed the MD Anderson protocol at MD Anderson. The chemo is given in very small doses and the side effects were mild. The real problem is the burned mouth from the twice a day radiation. I grew intolerant of food a couple of weeks ago and got the PEG. I find it quite easy to feed myself with the PEG. I cannot say how long I will have it. My tumor, at the base of the tongue was too large to allow me an option of surgery. The docs seem to think that my nodes are shrunken or non existent and that the tumor itself is quite diminished as well. I will have a CT scan in Oct. to determine if surgery is still needed. Although my mouth is burned, now that I don't use it to eat, I feel very little pain, and, with the PEG, at least am able to get my nutrition.
I hope that this was helpful.

Brian,
This is my first time here and I found your letters interesting and informative. Of course I went from periodontist, to dentist to endodontist, to even a radiologist buddy of mine, but every one thinks that a fit, healthy 54 year old must have allergies or reflux, or something benign. Once I was diagnosed, I certainly went through many of the humbling experiences that you mentioned. Fortunately it has not been disfiguring, although I am skinnier with a lot redder neck than when I started. Lance Armstrong said that cancer was the best thing that ever happened to him. I am not sure if I can go that far at present, but I will say that it has had many positive side effects. I never really knew how many people really cared about me, and showed it by offering to help me, whether in business, or with rides, etc. Furthermore, if this stuff doesn't give you some perspective on what is important in life, then nothing will.
Perhaps I am kidding myself since I just finished treatment this morning, but now I am having to deal with the real possibility that I may be returning to my old life of work, etc, not being a cancer patient or a disabled person after all. I was kind of getting used to the idea of not really returning to work, collecting disability, perhaps trying something completely different, like teaching ( I am a trial lawyer ), and yet, now, I realize that I might be going back, essentially, to my old life. I read an article that said that these are common anxieties. Gosh, I might not get to be a martyr after all! Certainly, life will be different than before no matter what...for one thing my ex wife has become so kind and considerate!!
Anyway, I enjoyed your letters and wanted to throw in my two cents.
Dan G.

To Joanna, Eileen, Dinah (I'll send you mittens-hope I didn't offend),DigTexas(Dan):

You guys are great and Eileen gets the prize for the big bonus of helpful tidbits to ask. I now have a NEW list of questions to tackle before Dave's surgery on 9/16.

I continue to be amazed at the strength of this network of "virtual strangers" who now have become my lifeline of trusted comrades as we all walk through living this experience together. I have printed all of these replies and am gathering them so I can rely on all of you to get me through next week. If only I could bring a laptop to the hospital waiting area!

So, Dave and I had our last meeting with surgeons on this past Friday and the reality of what we are facing next week looms large. I am wondering how any of you dealt with the few days prior to surgery and/or how your loved ones dealt in the first couple of days? Dave is having he flap/graft procedure and a modified radical neck dissection. They have told us that the reconstructive piece is longest and can make the surgery anywhere from 6-20 hours. I thinking at least Dave will be under anesthesia and an option to sedate myself looks good too. I am so worried about feeling frantic as the hours tick by. I plan to ask for updates during the surgery and am mobilizing a personal support team to help me through that day so I can be best able to help dave when the surgery is over.

Every step on this journey feels overwhelming at times but you all remain our collective inspiration. Any thoughts you could share about how to decrease the pre-op fear factor would be greatly appreciated.

Hope this day finds you all well,

Kim