Hi Jacques,

Thanks for the support. Yes Im trying real hard to enjoy what is good and “Manage” what is bad. Im learning to take it day by day and to be patient with the healing process. And in the scheme of things…these are the little challenges that I can handle. The funny thing is I always thought of myself as “Low” maintenance. I was never big into fancy clothes, fancy cars or name brands. I wasnt a picky eater and I always went with the flow. NOW….phew Am I feeling the high maintenance with this stuff. LOL… this is alot of work. hahahaha

Well hope all is well by you. Did you go for your PET. I know you warned me about how difficult it is. Im due end of Feb. Doc ordered it for me now. I just have to follow up.

Good luck my friend…I’ll be in touch

Love,
Elena Cuomo

Hi Jacques,

Thanks and Merry Christmas. Yes I heard you guys had 2 feet of snow. It was beautiful. In NJ we got over a foot. Everyone enjoyed it especially the puppies…Have a great holiday to you and yours….ENJOY

Best Regards,
Elena Cuomo : )

Hi Jacques,
I want to Thank you for responding to me (ONCE AGAIN) yeah Sunday I was in a “FUNK” It lasted a few days but today I went to see my ENT Surgeon for my 1 month check up since the disection. He feels Im healing nicely and reminded me its a SLOW process. So I told him a bout my FUNK and he said WHY???? We conquered the most important thing—-We got the “C” now lets HEAL.. ANd this season I have everything to CELEBRATE for…

NOW those words of wisdom work for me.

I thank you for all your HELP! I wish you a wonderful Holiday Season to you and yours!!

GOD Bless,
Elena Cuomo : )

Hi Elena,
I know it’s difficult but it takes a few weeks for the neck dissection to heal and even longer to regain sensation. As soon my scar was healed enough, i started rubbing my neck, scar area and ear with those loofa type gloves. I still do that everyday in the shower. I think it stimulates the nerve ending and helps regain sensation. From totally numb after surgery i would say i am almost 95% back to normal in the feeling area. The neck scar is always a bit tight. It feels like i have tape stuck down my neck. But again a hot shower and some daily stretching helps work that out, but don’t do that until the scar is healed.

Regarding the saliva the radiation is really what does the damage. It takes a long long while to come back. My last rad was June 4 2008. Today Dec 13, 2009, i still carry a bottle of water with me everywhere. My saliva is thicker than normal. But slowly over the months it has without a doubt improved. My oncologist told me that there can be slow improvement for up to 2 and 1/2 years. The most difficult area for me is the back of my throat where there is the least saliva. That got zapped the hardest.
Again the best medicine is having water or syrupy juice like peach juice to coat your throat.

Your voice will come back and it will take a few months to come back. From unable to speak, it came back gravelly, then would be difficult to speak if i was tired etc….

My voice was poor until about Oct 2008. Then in November 2008 i was able to resume doing voice overs. Today my voice is still a bit deeper than it was but it still dries out easily and quickly.

Bottom line is stay calm. Your doc should probably have you on some anti-anxiety meds like xanax. It really helps take the edge off the frustration and unnecessary worry.

It was great to hear from you. Please keep in touch and let me know how you are making out.

Love and God bless,

Jacques

Hi Jacques,
Thanks for the emails. They were great and very helpful to me. Im doing OK….every day is different. Did you push yourself to talk?? How long did it take until U got ur voice back?? How long after the disection was it til youwere able to swallow. Its 3 weeks now and I still cant talk, swallow. What the heck?? I cant stand it anymore. Although, I must say the other day I forced myself to talk and I was. But my thraot started to get scratchy and it went away. Today I have COld Sweats. I have energy but I cant figure out if Im catching a COLD. How would we know ??LOL I feel sick with my throat everyday…OH Im sooo confused..HELP!!
Best Regards,
Elena

Hi Jacques,
My name is Elena and I have followed your blog. You have been aN INSPIRATION TO ME. Your courage and dealing with this discustinug disease has helped me. However, Im having a huge setback. I cant think the positive anymore Ive been in so much pain and I just cant begin to heal.

How do you do it? Do you have any words of encouragement? Ii just had my neck disecction and I feel like the Bride of frankenstein. My begininning fight I had trouble with the Feeding tube and that came out. Now last week I was onto my 11th week of healing—-I developed Pnemonia and was fading away of malnutrion. tube is back in but now Im so angry that I lost so much healing time…HELP Im sick of being sick
Besst regards,
Elena Cuomo

Hey Jacques,

So now I’m getting to your posts. I am spending time each day trying to catch up on what is happening with others in this blog. I am so grateful to Jill for starting this blog and for others like you who are posting their experiences, along with thoughts and feelings, and helping to pave the way for me and others who are not yet as far along on this journey as you. It’s like a roadmap helping to show where some of the mountains, valleys, expressways and suggested detours are. It makes the road easier to travel. It’s also like looking at some snapshots of the future. There are certain blogs, like yours, that help to prepare me for what I might expect since we share a similar diagnosis.

You closed the first part of your biography with these words: “For now I feel very much at peace with myself and hope that in some way this has been a true blessing from God bringing me closer to have a better ability to savor the moment and not worry about the trivial.”

This reminded me of a study note that can be found in the Life Application Study Bible – New International Version, Book of Job, Chapter 14: “To know what to believe is not all that is required to please God. Truth untested by life’s experiences may become static and stagnant. Suffering can bring a dynamic quality to life. Just as drought drives the roots of a tree deeper to find water, so suffering can drive us beyond superficial acceptance of truth to dependence on God for hope and life.”

I am looking forward to reading all of your past and future posts. There is no doubt in my mind that I will find jewels of information there that will apply to my life, for I have already found jewels in what you have written in support of me and others in this blog. Thank you for being a part of this wonderfully therapeutic network of supporters.

Hi there Jacques. I was getting a CT scan every 6 months but now they say only a chest xray once a year. I still see the doc every 3 months. Red wine, which I used to love, still doesn’t taste right to me. I can drink some sweet whites but that’s it. And some things are still a bit to tart or acidic for me – lemony things or vinegar based salad dressing for example.

Yes my saliva is still thick. I wake up and spit or rinse my mouth at least once during the night. I can eat almost anything depending on how much work I want to put into it! But my swallowing is still not normal, result of the surgery I’m sure. But I can deal with it. Mentally I’m doing great. I can’t believe how many tonsil cancer cases I hear about now. You and I are so lucky to have come through it so well.

Stay strong and let’s keep in touch every few months or so.

Heidi

~~~~Sleep well dear Angel. Although feel drugged up you made perfect sense,
You have touched more lives than you will ever possibly know.
From what you have told us all these months you have been blessed with the best husband, family and support anyone could ever hope for.
My prayers and thought are always with you.
All my love,
Jacques~~~

~~~reply~~~~
Jacques you are such a sweetie. Everything you have said to me I can easily toss right back at you times 10. Yes I have been blessed with the most wonderful support, unbelievable really, and you have been a big part of that. I’m so so glad your scan came out clean and clear. Do you feel like you can breath easier? I sure hope so.
Always keeping you in my thoughts and wishing only the best for you.
Love and big hugs, Cheryl~~~

hi there I just wanted to say hi & see how your feeling. I hope all is well with you & your feeling better.

That’s weird about the tick bite. When I was starting to feel like something was wrong before my diagnosis I also thought I had Lyme disease. I had what I thought was a bulls eye on my foot. I felt tired all the time & my joints ached. I had the Lyme test but that came back negative. I hope you doing well. I know how much it sucks worrying about whether or not it’s gone for good. Try to hang in there. I won’t say stay positive I’m sure you heard that about 1000 times I know I have. But I guess it can’t hurt to try. Good luck with everything & be well.

HI JIM,
The speaking got pretty tough by the 4th week. Mostly due to the swelling and the pain. About three to 4th weeks after the end of the radiation my voice started coming back.
Hang in there. Just try and deal and control the problem you’re experience at the moment and stay as calm as possible or you make matters only worse.
You’ll get through this!
God bless you!

Hi Jacques, I am going into my four week of treatment.
What week did you your voice?
The left side of my face is feeling all swollen?
I try post later all the meds, that I am taking. Let me know what of thinks of them if you get a chance. Thanks, Jim