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Update

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hello my fellow Warriors and Warriorettes,

It's been a while since I posted on the boards. I've popped in now and again to read a few posts and see how you all are doing but my time on the boards has been limited. This was self imposed as I needed to do so for my mental health. While my attitude is positive I found seeing some of my fellow H&N friends hurting, so many new members and recurrances was getting me down. Please know that you all have been and remain in my thoughts and prayers.

It's hard to believe but tomorrow is the one year anniversary of my diagnosis. An entire year of my life dedicated to beating Jack. I'm 7 months post treatment and all in all, I'm doing well. I have some nagging side effects including neuropathy in my feet along with RLS, nerve issues persisting from the neck dissection and a bit of lyphedema as well. I've been put on Neurontin again to help with the nerve issues and pain which is annoying as hell to be honest. I get lots of muscle twitches too. Hopefully the Neurontin will help. The general aches and pains are handled with OTC remedies and I have Tramadol for the days it gets bad. Swallowing is still challenging but there is some improvement. It's still chew, chew sip swallow but my swallow study was very encouraging. Fatigue is still an issue and it looks like my thyroid has probably been affected. As of now they're keeping an eye on things but I fully expect to be on Synthroid within a year. I've started to practice my music again and working on my voice. My voice sounds a bit different as my oral cavity has changed and stamina is an issue. As my SLP said, think of it like a marathon runner that hasn't run a race in a year. She encouraged me to practice daily at this point. I won't know for a while longer the full effect treatment but I'm encouraged so far. My goal is to be ready to perform again my the end of March next year when the lodges in the Shenandoah National Park open. Those are my "bread and butter" gigs and management is ready when I am :)

Yesterday was my second 3 month check up. I was at Johns Hopkins from morning till late afternoon. I was scoped, poked, prodded and stuck and I'm still officially NED! My team was pleased with where I'm at. I've gained 15 pounds since treatment ended (officially 182lbs up from 167). They said that's perfect and not to gain any more ;) That means the days of ice cream and BLTs are limited from now on ;) I never did lose my taste and I'm at 100% although spicy is still out. Saliva is at about 80% albeit thicker than before. I still have about 6 months before I'll hit what will be considered my "new normal. They said that some experience improvement up to two years but to pretty much gauge it at 1 year. 

Overall, things are Ok. I've been back to work full time for a while now and while I'm pretty beat at the end of the day, I'm managing well. Marcia and I are stronger together than ever and are looking forward to the future together. Socrates celebrated his 3 year birthday on Monday and he's as loving, funny and goofy as ever. He's laying in my lap as I type, purring away :) 

I hope you all are doing well and it's nice to see so many of you still on the boards. I extend my heartfelt thanks to everyone. I don't know how I would have navigated the waters of head and neck cancer without your help and encouragement. I'll continue to pop in and check on you. Who knows, maybe even throw out a few posts and words of wisdom ;)

Positive thoughts and prayers to everyone. Continue to fight the good fight and kick Jack's ass!

"T"

 

 

KTeacher
Posts: 938
Joined: Jan 2011

Thank you for sharing, and I understand the need to cut back.  You have been a tremendous support to your fellow warrior's and I know that that will continue.  Glad to hear about such good checkups, clean and clear.  Good luck with the music, I couldn't sing before treatment and was much worse after treatment, thank heaven for the CD player!  I can't whistle or spit either :)

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

I been noticing the absence and totally get the mental downer. This month is a year for me too and nearly that long here.  I've not found it any easier to read the reports of recurrence  and other struggles. I  can say I have developed more empathy that makes me like I can understand and help others more than before. Glad you continue to improve. Live well, sing strong! Don

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

tho I know what you're saying.....it is hard to see others coming in, knowing that they've got a rough road ahead.....and recurrances take their toll, as well....Sometimes we just got to think of something other than cancer.  I'm so glad you're NED, and doing well in your new normal.  When you talk about your neuropathy, I feel so grateful that mine is of the numb type.....it's a PITA sometimes (like today I was trying to hold something with one hand, and just reach down to pick up one screw and one bolt.....there was a 50/50 chance I'd come up with two bolts or two screws if I tried to pick them up without looking......LOL.  But at least it's not pain!!!)

Give yourself some time with the fatigue.....I know this one well....it took every bit of a year to have the stamina I had before.  I'm still hanging on to hope that by next year, I'll be able to taste icecream (I'm still testing it everyday, tho :) ).

Do check in now and again, and let us know how things are going.....you were a dynamic force on this board for quite a while....and we do miss your humor and common sense.

p

PS....Happy Birthday Socrates!! 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Glad to hear from you and know you are making your way..., it will continue to get better with time..

John

CivilMatt's picture
CivilMatt
Posts: 2965
Joined: May 2012

Hi T, (I still like that)

You sound a little down with some hints of up.  Just don’t flash your pictures of Jack, I have a weak stomach.

While I can go more than one bite per swallow, I still need lots of liquids at every meal.  The days of munching a bag of chips (without water) are behind me for now.

Having a NED in your repertoire should help pave the way for more tomorrows.  Given the green light for practice makes March something to strive for, you will make it.  Just carry a water bottle.

I am glad Marcia and Socrates are both doing well, it has been a tough year.

Hang in there; I have a world of confidence in you.

Matt

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

glad to hear T,

will continue to keep you in my prayers

ron is now ned too.

god bless,

janet

Sunshine60
Posts: 74
Joined: Apr 2013

Was happy to see the update T- it's funny how we get used to seeing certain people on the board then worry when we don't see them for a while.   You started treatment  before my husband so we were following behind just by a few weeks . Your posts always made us hopeful and I am grateful for that.  It is hard to see so many new people here, but at least they found the site.    Keep moving forward and when you want to check in and say hello we will be happy!

God Bless, 

debbiejeanne's picture
debbiejeanne
Posts: 2441
Joined: Jan 2010

T, good to hear from you.  we miss your comments and humor but understand why you stay away.  it is hard to read somedays.  glad Marcia and the cat are doing well and keeping you in line...lol.  wonderful news on NED!  keep on healing and stay well.  i pray the side effects will eventually go away.  Good luck in march.  keep practicing and stop by now and then to let us know how the voice is doing.  take care and hope to hear from you again soon.

God bless you,

dj

katenorwood
Posts: 1829
Joined: May 2012

Wonderful post !  Thanks for popping in and letting us know how things are going !  We do miss you, but totally understand that LIFE happens after cancer.  Hugs sent to both you and Marcia !  Katie

dunedintech's picture
dunedintech
Posts: 68
Joined: Apr 2013

T - great to hear all tracking well. As we were very close with our respective treatments I found your postings / comments a massive help to me, especially once treatment stopped and the heading began. I too am interested to see where I am at in April 2014 which will be one year out. I hope the singing works out and I wish you all the best.

C

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Great to hear from you, and awesome news on NED! Good luck with getting the vocal cords nice and strong again for March...it's always good to have a goal to work toward!!

Jamie

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

Great to see your post! Miss you but certainly understand your need to move forward. I was scheduled to go back to Mayo for results of my last tx on Dec 4th but it has now been pushed back to Dec 18th.  That way, I could do PET and meet w/ONC and Radiologist all in one day, not having to spend the night. Flying private so weather can always be a factor, especially MN. in December.  Feeling good! Plans are Thanksgiving at the lake, back Thursday night then off to Paradise Island in the Bahamas with family on Friday morning. Cold & wet here in STL so vacation will be a nice change.  Good to hear that you & Marcia are doing ok and looking at your future and good things to come. The beast has a way of strengthening our relationships beyond what we ever thought they could be. 

Be well & God Bless,

 

Candi

 

 

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

T,

Thanks for the update. Understand completely how you feel. Kreg is 1 yr out from treatment as of the 28th of this month. Has been NED as well. It's been a rough journey, but we're picking up the pieces and working on putting things back together again. He's struggling with some buldging discs in the upper back and it's causing a lot of pain. He's currently going through some physical therapy that should help. Saliva is good, but keeps that bottle of water handy at all times. Taste is back for most things, but some things just don't taste the same. He has not been able to gain more than 5 pounds back since treatment. He was close to 190 when treatment started, lost about 45 lbs, but doesn't seem to get any put back on. His appetite comes and goes. He still has a carnation breakfast mixed with a bottle of Ensure each morning. Dr's don't seem to be too concerned about his weight. In fact, his cardiolgoist thinks he's at a good weight.

All I can say is everything takes time. Everyone has a different healing process. Life will get better. We see it everyday.

God Bless, and keep us updated.

C

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

Hi T. I'm checking in on the boards today and saw your post. Thanks for the 'positive' update. Sounds like you're about where Ruben is. He's steadily improving as well. He's starting to eat more, thanks to Megace and attitude. Saliva is at about 25% and improving. Weight is still down, but stable.

Stay well. God's Blessings. We too are forever grateful for the support while encountering the pot holes and effects of the treatment; all good news is a welcome relief.

Hugs.  Jude

 

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

Happy to hear from you and with your positive thoughts, you definitely will get even stronger and better. Sending positive prayers to you and your family. God Bless. 

Nelson

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Thank you all for your kind responses. May you continue to kick Jack's a$$!

Positive thoughts and prayers

"T"

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

So nice to once again see your smiling face & to know that you, Marcia, & Soccrates are doing well. You are such a positive influence to others on the journey.

I read the board, but post infrequently as I rarely have helpful information to those here. However, I still rely on all our wonderful friends for support which they readily give.

Widowhood is very lonely and for me, time does not heal, but perhaps allows it to be tolerable.

Best of luck with your singing. May it just get better & better.

Luv,

Wolfen

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I know what you mean. My wife has seen how bad news on this thread has affected me and has told me to take a break now and then. Our diagnosis anniversary is one day apart. Congrats on the NED. Whenever I see NED it brings a special joy knowing someone is winning the battle.

That ice cream and BLT thing.............chow down. Of coarse you can split them up a bit. Have the BLT for lunch and do the ice cream after dinner, it spreads the joy out a bit.

I have confidence that daily practice will result in the return of your singing voice in time for March.

 

Head up.............March on...............Heal on my friend

      Jeff

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