Hello, friends! I've been gone a week and it seems like a year! I've missed talking to all of you.
Tom has his CTscan on the 11th, but the surgeon was unable to get the scope down the nose for the rest of the exam, so we went on to Georgia and got back to the doc on the 18th. The tumor board has recommended a 'modified radical' dissection of the right side and because there are two 2 cm nodes presenting on the left, they are suggesting surgery on that side as well - although it would not be as much.
Deep breath time - and believe me, I'm holding on to all you have said about the surgery being the easy part of all this.
On the good side - Tom has improved, strength-wise, and is talking longer walks and even went into the office for 1/2 day today. The visit with kids and grandkids did him well, although he rested most of the time.
Despite all I've tried to 'gently' tell him, he was truly devastated when the surgeon frankly told him not to expect to return to his 'former self.' After hearing what you have said, I was glad the doctor told him to expect at least a 6-week recovery period for the surgical portion, and at least 6 months to recoup the energy/stamina, etc. from the rest of the treatment. He cautioned Tom to understand that the Tom of old might never return, but to take the blessings that have come from this experience as 'replacement' for whatever was lost.
I've got to go now.....missed you and wanted to keep you informed. I'll hope to get time here tomorrow to catch up on everyone else!
Love
Nicki

Nicki,

I am truly sorry for the news you and Tom have received. I have not been through the surgery but others will be able to help you as you both have to take this next journey.

Tom could very well return to "so close to normal" that you won't really know the difference except for the strangest times. Even though it won't be the same, life will be very full of love, laughter and happiness. Your love for each other will grow in amazing ways and the things that seemed so unimportant in life will take on greater meaning. The things that used to bother you will soon fade away and you will have a new outlook that will be much better in many ways.

Grieve the old life. Go through all of the steps necessary to grieve...denial, anger, acceptance,etc. Then...move on to your new lives. If you need anything, you know how to contact me. I will be praying for Him to hold you both in His tender, loving, healing hands now and forever.

May He continue to bless you in many ways.


In His Love,

Ed

Nicki, will pray for Tom to have as easy a surgery as I did. I only had one side done, so he is one up on me, but I pray they will go well. Surgery is much easier than rad, more difficult than chemo. At least, that was how it was for me. The post surgical issues are the most trying. I have tissue and nerve issues with my shoulder, but nothing that stops me from working in the yard or swimming or doing any of the things I used to do, its just that there is some pain during those types of activities. Not debilitating, just there. I take tylenol when it gets difficult. Just two per day for a day or two after real strenuous activity. No big deal. Hope all else is well with you both.

Hello, Gentlemen.
Thank you so much for the encouragement. It has brightened my day - and I therefore had a good day at work with only a few heavy sighs thrown in when I let my mind wander too much......

It is good to know that you are swimming and "digging in the dirt" and doing 'regular' things - and needing only Tylenol to get through. Tom's karate sensei visited last weekend and he is so gently encouraging - I know Tom is longing to get back into the dojo, and I know he'll be there as soon as he can. While I doubt he'll be up to his top abilities for a long while, I have no doubt he'll regain his skill level with time.

I'm thinking I may have to have him see a psychologist or other 'head' doctor. He's very, very emotional right now, and that is fine, but at times he gets very morose and he says things that 'scare' me......like "if this comes back, I don't think I'd be able to handle chemo again." I remind him of the survival stories here, and I've told him that he WOULD be able to handle whatever comes our way because we have each other and a great life ahead. We do remind ourselves often that God never gives you more than you can handle - and that we need to hand the fears over to Him. Sigh.....sometimes it is easier said than done, however.

Kirk, did you go through physical therapy? If so, how soon after surgery did you begin? Did the surgery have any impact on your speech/swallowing functions?

Love you guys..
Nicki

Hi Nicki,

I would like to say that I would have given my right arm to have had a caregiver such as yourself while I underwent surgery/treatments, etc. Tom is a very lucky person to have such a loving, caring and supportive wife by his side. Give yourself a pat on the back - you deserve so much more.

For what it's worth, during my glossectomy they also did neck dissections on both sides - 54 nodes removed from the right (5 positive) and 34 removed from the left (all negative). I just made it to my one year anniversary post treatment and although I'm waiting now for my CT scan results I can see such a huge difference in my life now than the way it was last Thanksgiving. I still have many "issues" and will continue to have "issues" from now on, but I'm finding ways to either work around them or just learn to live with them. Tom has every right to be scared, emotional, angry, etc. I know that I still deal with these same feelings even today. Unfortunately(?) you are experiencing these with him whereas I dealt with them basically alone and on my own. Hang in there! And tell Tom that we are all praying for him to fly through this surgery. It's no walk in the park, by any means, but doesn't come close in comparison to the chemo and radiation.

Sorry for rambling but wanted to know that I'm thinking of you both.

Many hugs, Nancy

Hi Nicki,
I have had two neck disections 4 years a part. How bad this surgery will be will depend on what sections and muscles they have to cut. Please read the section on the forum for this and then ask the doctors all the questions about what nodes etc. Yes, this can be a walk in the park after what we have gone through, but also can be something very difficult to recover from if they have to cut shoulder muscle. Make certain they try to preserve his saliva glands if possible. Doesn't sound like they will take them but always good to ask.

As to after surgery issues, make certain he his referred to a PT who knows how to handle neck dissection issues as soon as possible after he is released, especially if he plans to get back to martial arts. I was out of hospital both times in 5 days. Stupid me, went back to work at desk job 5 days later and paid for it with major back pain for 9 months. PT was not precribed first time until damage done. Second time, in PT 2 weeks after surgery and no problems. Ready for work after 8 weeks.

I do hope his surgery goes well and he recouperates quickly.

Take care,
Eileen

So many things to think about. I'll get out my notebook for the lymph node questions.....The doc was very good about describing all that would be done on the right side, but then again, he used some words that I didn't know - and I figured I'd go 'look them up.' Of course, I can't recall them all now! I have looked at the forum 'dissection' site which really helps, and I am approaching this convinced the good doctor, who is highly recommended, will preserve everything he possibly can.
I am always amazed at those of you who have conquered this disease - and then had to face it again. God bless you. I believe your courage and commitment to helping others will be rewarded one day.
Nancy, all I can say about 'being there' for Tom is that this is one amazing man I married. He is all good things - mixed with a fair measure of bull-headedness - and a personality that draws people to him like a magnet. Interestingly, he can be abrasive and argumentative (you DON'T want to get into the middle of a controvery with my mom and my hubby!), but he does not hold a grudge. I don't know how I got so lucky to find him (in a grocery store, no less!!), but after 33 years, I'm still crazy about him. I'm glad I'm the one helping him through this. It does throw me off kilter sometimes when the least little thing makes him tear up - or out-right cry - but it also makes me love him all the more.

OK - now I'M rambling. Eileen, I'm going to make sure we address the PT issue with the team during our first post-op appointment. I know there is a survivor volunteering at the hospital to help head&neck patients...he actually had the doctor's signature tattooed along one of his scar lines! Gotta love the outlook!

Thanks so much for caring.
Love
Nicki

Hi Nicki,

Don't assume anything. My first doctor removed a perfectly good saliva gland because he said 'it wouldn't function after radiation anyway'. I had SCC in only one lymph node far away from the gland and no known primary. We have little enough saliva after radiation to lose any functioning saliva glands that do not have SCC.

As to scars, ask for stitches, not clamps. I told my second surgeon that I didn't do scars and he did a marvelous job. Neck dissections are like a form of plastic surgery and all that hem stitching underneath really counts toward the final result. He only used one clamp and the rest was all stitches. While this will look horrible when you first see him after surgery, it does heal. I also used a cream called Biafine to help with the healing and the PT massaged the scar to reduce tightening.

They will probably have him out of bed the day after surgery. They want you to walk. I would suggest he support his arm with his hand so that there is no drag on the shoulder. Your arm is very weak after surgery and I found if I didn't support it, I pulled the shoulder out of whack. This is what got me in trouble when I had the first surgery. I also supported in with a pillow when I was sitting. You don't need to pamper it, just don't let it be dead weight pulling on the shoulder until it gets it strenghth back.

It's too bad he has to wait so long for surgery. Anticipation anxiety is the pits. No wonder he is scared.

Take care,
Eileen

Wow, Eileen - - lots of things for my notepad! I'll definately talk to the good doctor about the scarring and the salivary gland - - and I'd never have thought about the arm!

We did use the Biafine for his neck during radiation.....wonderful stuff - Tom's neck went from bright red to a rosy pink and from rough and scaly to baby soft The smell is not great, but you can't have it all, huh?

I've put a call into his GP to talk about Lexapro or Zolaft or something to help him...neither of us is sleeping worth a darn...both of us are waking with disturbing thoughts...not good.

I'm going to see if I can coax him into eating something by mouth tonight. Wish me luck!
Love
Nicki

Nicki,

I have to second Eileen's point about the plastic surgery aspect of neck dissections. My surgical team did an extremely careful (and artful) job of stitching up the entire area, and I've gotten many comments from other doctors about how well concealed the scar is - even though it's almost 6 inches long.

Cathy

Nancy,
I just read your share and it breaks my heart that you had to go through this alone. I can't even imagine going through treatment without my loving wife helping me. You are truly a very courageous person.

Nicki, I will keep you and Tom in my prayers.

Nicki, I went to physical therapy for 6 weeks as that was all my insurance paid for. I started about two months after surgery, but had been doing the loosening-up exercises they give you after the surgery. No effect on swallowing or anything else. Got off pain meds about 6 weeks after surgery. Was never admitted to the hospital. After surgery, I was in the post op ward and then sent home the next morning. I was only in the hopital for about 20 hours or so. I spend as little time inside as possible. There are sick people in there. Will pray for you both that this is the last of it and it is all uphill from here on out. Am sure Tom will come through with flying colors.

Hi,
It is a dreary day - I left work early (for ME for once!) to get a jump on the Big Feast preparations. I love putsying around the house when it is raining and gray - such a comforting feeling.
And TOM IS AT WORK - so I have the house alone for the first time in what seems like forever! I get lots more done when I'm alone...

Kirk - you are so right about the sick people in the hospital! I recall so vividly our first day at chemo - I felt so strongly that WE DID NOT BELONG THERE! I shudder to think he'll be admitted for as long as they are talking; I suppose they know what they are doing, and perhaps he'll have a private room, which will make it better.

This is going to be a most meaningful Thanksgiving; I want each of you to know how grateful I am that you came into our lives. The past few months were easier because of you. As I bow my head in thanksgiving for all the blessing God has bestowed on us, I will be thinking of you.
I pray each of you has a safe and joyous celebration in your homes with your family and freinds around you. For those abroad who don't celebrate our special day, remember that we'll be thinking of you, too!
Love
Nicki

Thank You Nicki, God Bless You, Tom and your family and enjoy Thanksgiving!!! Love, Carol

Nicki,

I am sorry you and Tom have to wait so long for Tom's surgery. I can't imagine how heavy this must be on the mind and the heart. Much of what Tom is experiencing right now is just part of the grieving process that one experiences after such a tremendous loss. Tom (and you, of course) has lost his old life and especially right now is just starting to experience the worst part of radiation and now is facing surgery. Any one of these things would be tough by itself.

I am praying for comfort and peace for both of you and for His wisdom and guidance for the entire medical team to provide the best possible treatment for Tom. I know through it all, He will be there to carry you and/or Tom when you need it most.

God Bless,

Ed

Nicki,

Like Ed, I am sorry you have to wait. Keep on loving each other as you do. Tom is very fortunate to have You for his support. Tell Tom that he just might find that the "new self" can be better than the "old self" in all the things that are really important. Praying for you both.

Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides