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New and my story so far

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Hi! I've been to this message board many times in the last 5 months. Thank you for posting your experiences and advice to let us know we're not alone.

Over a year ago I started losing my voice and was being treated for allergies and GERD. Finally in June 2013 I had a day where I couldn't breath. Long story short, a biopsy revealed I had cancerous tumors on my larynx. Big enough to obstruct my airway the ENT did a trache. I barely had a voice before but since June I've had NO voice at all. Only recently I can make a scratchy voice but mostly whisper.

Two tumors were idenitified right on my larynx. One a little tricky because it curved around it. I did the 35 radiation treatments and 3 chemo. They zapped the lymphnodes too just in case although the pet scan didn't show anything.  I did ok through the treatments. Plenty of tired days, felt weak, very sore throat but managed to go without a peg tube, Lost 30 lbs though. The worse was the coughing and mucus that never seem to end. 

I finished the treatment the last day of august 2013. So it's been 2 1/2 months. That first month was when fatigue really hit me, could barely walk! Now I feel stronger even doing some yard work but the trache is driving me crazy!!!! The mucus isn't bad anymore but the ENT says there is still too much swelling around my larynx. He can visibly see one of the  tumors is gone and says the other looks like a little scab. I go next week for another petscan to see if the tumors are gone.

Anyway back to the trache. I HATE IT. Now I have a hard bullfrog looking swelling under my chin and it hurts. I am trying to massage it and read up about lymphnode massage techniques. Under the trache itches like crazy. I have a dry cough that makes it hard to sleep. Just this past week I am getting blood streaks through the inner cannula so I bought a humidifier hoping it will help. Good news is I can eat just about anything now (Just in time for Thanksgiving) but my throat is still a little sore.

Still no voice. Pretty miserable since I am a music teacher and performer. I haven't called my family for a year, but some have visited. I feel like once the trache is removed I finally will start to heal. Very depressing for me.

I am also an artist and made an altered collage book using actual vintage images about my cancer. It is on pinterest. It is a kinda commical and was therapeutic for me. It's not done yet :)

<http://www.pinterest.com/cathorner/my-cancer-book/>

KTeacher
Posts: 884
Joined: Jan 2011

Welcome to our little group.  You have certainly been through the ringer.  I am glad that you found us during treatment, I didn't find out about CSN until I finished my first go around.  No trach but others will chime in that have.  Hoping your scans come out clean, I should have and MRI in December to see if they got the bugger on the nerve in my cheek (#4 since 2010).

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Sorry you had to go through this, but welcome to our club...

There are some massage techniques on the SuperThread, not sure how effective in your situation...

The swelling under your chin could be first signs of what we call Turkey Neck..., swollen lymphatic glands damaged from rads..., eventually they will find new drainage paths and the swelling will reduce significantly..., usually 6 - 12 months.

Thoughts and prayers for a good upcoming scan...

BTW, I too am an artist, though not my career, but perhaps down the road...

Best,

John

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hi Cathy,

Welcome! So sorry to hear all the struggles with your voice and dealing with side effects we all know so well. Your artistic talent is amazing and the collage really strikes me to the core as you have so adeptly captured how one can visualize how you feel the pain and discomfort of it all. You are truly gifted. I hope you a speedy recovery and get your voice back and all. I hope you don't mind if I post a couple pages here to share with others.  Don

 

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Thanks everyone! I feel like I know some of you since I've read your posts since I got sick. 

Glad to share my art, thanks for posting it here! There were weeks I was too sick to even work on it but the book is almost full now. I'll be decorating the cover and adding some textiles and things to it. With the petscan next week, right now I hope it has a happy ending.

CivilMatt's picture
CivilMatt
Posts: 2838
Joined: May 2012

 

 Cathy,

Welcome to the H&N forum, where speaking is something we talk about.

So sorry to hear of your plight, such a tough way (cancer) to generate material for your art.  The pieces presented by Don, touch a chord with me.

I hope you continue to improve and find joy again in conversation with family and friends.

Best,

Matt

 

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

Cathy, i also had can of the larynx.  was dx in Aug. 09.  During Sept. and Oct. 09 I had 35 rad tx.  Was cancer free until Feb. 2012.  Then I had to have a complete laryngectomy.  It's like having a track only permanent.  Like you, I HATE IT!  February 28, 2014 will be a full 2 years I've had it and I hate it as much today as I did when I got it.  The only good thing about it is at least I'm cancer free and have been since the surgery.  I no longer breathe thru my nose and mouth, i breathe thru a hole in my neck (stoma).  I also have the bullfrog looking swelling under my chin.  It is b/c the lympnodes were removed.  I was told the swelling would go down but it's been almost 2 years and it hasn't gone down at all so far.  I hope you have better luck with yours.  I don't know what the  inner cannula is but I've had blood come up my lary tube sometimes.  it tured out to be nothing.  I pray yours is nothing also.  I pray you can get rid of your trake very soon.  I am very glad for you that yours is only temporary.  Once that comes out you can begin to feel somewhat normal again.  i was without voice for 1.5 years.  u r right, it's very depressing.  give it time.  i'm sure you will get it back.  others have lost their voices but got them back.  maybe not the same  voice they had b4 tx but at least a voice.  your art work it great.  so wonderful that you have something to enjoy and help you thru this rough time.  keep up the good work and keep on healing.  be patient about the trake, it will be gone soon.  it's awesome that one tumor is gone and the other only a scab.  Will be praying that all is and stays clear.   Hang in there and continue with your art work.  It's beautiful.

God bless you,

dj

CathyHorner's picture
CathyHorner
Posts: 29
Joined: Nov 2013

Thanks DebbieJ. That sucks! So sorry you have to live with the trache but glad you are healthy. I hate turtle neck sweaters so this trache just always feels like it's strangling me. The reason for the snake around the woman's neck in the collage Tongue Out

My art is always whimsical but usually not so dark. I usually do pretty fairies and stuff.

I have a big farm house with a music room. I've played guitar for 40 yrs and taught lessons for 20. Was a performer too with a CD that got international radio play and in guitar player magazine. I had to cancel all my students and left with zero income. People on FB donated money (which was amazing)  to get me through the last 5 months and today found out I am getting disability. I do art exhibits too.  This has been my dream, to have an old farm house where I do music and art. I WANT MY LIFE BACK SO BAD!

It's definitely baby steps to recovery.  Keep telling myself it's only been 2.5 months since treatments and need to be patient, no choice really! 

hwt's picture
hwt
Posts: 1835
Joined: Jun 2012

I too, enjoyed seeing your art. We have several musicians on the forum but I don't recall an artist. Had a trache myself, following surgery 01/2012. Fortunately, they were able to pull mine out before I left the hospital but I still recall it as one of my most hated memories. I can understand your concern and frustration.  Prayers coming your way as you continue to recover.

Candi

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

Welcome to the family :)  Your artwork is absolutely AMAZING!!!!  I live in a family of musicians...not so much one myself though.  I can keep a simple beat going on the drums, but no big runs or solos.  We have a music room, too, and there is always noise at my house.  I love it!  I'm sorry for all that you've been through and hope you continue to heal! 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Welcome !

it is wonderful that you are already through treatments and that they are working.  YIPPEEEEEE

as others have mentioned....it does get better -- just give it more time.  You will learn to live with the "new" you.   It takes a while to come to terms with it all that's for sure.

your talent is amazing !!  and something that you can continue to do. 

definitely take a look at the SuperThread.  Filled with lots of good advice.

Also, I sent you a private message.  You should get a notification that you have a message.  Just click on the link.  It is set-up similar to email.

Ingrid

 

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

Welcome to our club. Sounds as though you certainly went and still are going through the initiation. I am really glad to se your using a great talent to help you get through your ordeal. I only had a trach for a shorter time and it certainly didn't make my top ten list of things enjoyed in life. I also lost my voice but gained it back but not the same bassy (Barry White) voice I once had. I even did some speaking engagements (one at a high school) to help gain back my self confidence. I would say you have a good grasp on life and you have yourself pointed in the right direction. One step at a time.

Heal On

      Jeff

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