Hi all, thank you so much for the well wishes, and thanks to Sean for providing updates. I returned home yesterday (5/31/05) around 3:00 p.m. I'm up now for reasons I don't have to explain to the rest of you! So, I thought I'd let you know how it went.

I went into surgery the morning of 5/23/05 at the OU Medical Center in Oklahoma City, OK. My husband and my aunt along with a couple we know went with me to kick this all off! Surgery went well, took about 8 hours, and they provided updates to my family every 1-2 hours. They removed 1/3 of the tongue, replacing with a live graft (vessels included) from the inside of my left arm. Skin to cover that area was removed from the front of my left thigh. They also performed the jaw split, and neck dissection removing 20+ lymph nodes (haven't gotten an exact count yet). I was surprised to find they didn't remove any teeth, and am keeping my fingers crossed none were compromised and I get to keep them all.

Woke in the ICU. Remember vaguely something about there being a lack of rooms, but I got in. Glad I wasn't in a hall somewhere. :-) I stayed the rest of Monday through early evening Thursday in ICU. They did a good job of keeping the pain under control, and I have to say...care in the ICU there was exceptional. Had an AWFUL couple of episodes with the tracheostomy where the "cuff" got clogged with mucous and I couldn't breathe. The second time was Thursday afternoon. I couldn't breathe, and they ran my husband out of the room. He said he knew things were "escalating" when the ICU nurse didn't leave the room and just stood and yelled for another nurse to help. By the end of the episode, I had 4 ICU nurses in my room. I don't think the whole thing lasted longer than 5 minutes, but seemed like hours to me. I ended up shooting a blood clump about 15 ft. and hitting the far wall. I probably would have been grossed out by that, but I was too happy to be breathing again. :-)

Anyway, after moving to a regular room, I just tried to work on getting off all those tubes. I'd set my sights on another tube, and once it was gone I'd work on the next. Not sure how many "Star Trek" fans are out there, but I felt like a member of the Borg. I never saw so many tubes. They removed my feeding tube on Saturday which pushed me into having to eat again. The worst part was having to take all those medications orally that had been going in the tube. Was tough to find something for pain that didn't burn my tongue and didn't make me want to gag!

So, I'm home now, and should probably go rest before any of my family finds me up.

Thank you again for all your advice, well wishes, and relating previous experiences. They all have helped so much. I'll get on more in the next few days and will gratefully add my name to the list of survivors.

Glad to be back!
Jennifer

Jennifer

Glad to have you back, you have been thru alot but you sound great. Go back and get some sleep, and as often as possible. Give yourself lots of time to heal. May God Bless and keep you well

Jennifer
Knew you would do good lady!!!
You will feel tired for a few weeks don't push yourself to hard, bet it's good to be back in your own bed!!!!!!
Sunshine... love and hugs
Helen

Jennifer,

Welcome home. You are a trooper. Sounds like you have a great attitude and that is so important. Take it easy and don't be too proud to ask for help. Get as much rest as possible and before you know it, you'll be feeling GREAT.

Great having you back.

Jerry

Welcome home Jennifer

You have done well and have a fantastic attitude as well as a sense of humour which helps. Sound like you have the support you deserve at home and of course you have it here also.

Love and light from Helen

I'm glad to hear you're home, it's such a relief to leave the hospital. I can relate to the trach story, I HATED having that thing. Keep in mind that if you hold your finger over the bandage on the trach hole while you talk, the area will heal faster. Take care when changing the dressing as it can be rough on the skin of your neck.
Hoping the next few weeks see you feeling more like yourself.
Minnie

Hello Jennifer,

Reading your post brought back some ugly memories of my post-op. Time seemed to crawl by before I was able to eat and sleep normally again. Glad this part is over for you. Remember to measure your progress in weeks not days. Hoping you heal fast and have great follow up's.

Danny Boy

Jennifer, I was in the mood to whine tonite- that is until I read your post. What GUTS you have Lady! You Go Girl! Amy

Oh, heavens Amy. Whining is always allowed. :-) Thank you for the kind words! I'm off to read up on how your husband is doing and will post over there too. I know you were looking at a long commute for treatment...hope everything is working out okay.

Things here are going fine. My family gritches at me to get more rest, but it's so nice to be home...and being involved around the house makes me feel "normal" again. :-) I can tell the trache hole is healing up...less air going in and out when I forget to hold it when I speak (thanks for the reminder!!). Also, got a home care service in to change the dressing on my arm so I don't have to worry about that for a while.

Took my first shower yesterday. ahhhhhhhh..what a relief...probably to my family too. :-D So nice to have a truly clean body again and not just a sponge bath. The graft site on my leg tolerated the shower well, and I "double-baggied" my arm to keep it dry. I also got to eat a half-way decent dinner. Cream of Brocolli soup, small amount of mashed potatos, and some Boost...Butter Pecan. I know all of that will get old fast, but sure tasted good now.

Daniel, thank you for the reminder to measure in terms of weeks instead of days. My biggest weakness is I am really impatient.

SO NICE TO BE HOME.

Jennifer

Jen,

Great job.

Danny, great words of wisdom as usual.

How does it feel to have part of a new tounge anyway? Just curious.

Stay on track. God bless. Attitude is everything.

Robert

Jen,

I'll never forget my brother-in-law, who is a head and neck surgeon (but did not treat me), reminding me to be patient about getting used to my "new anatomy" after my partial glossectomy. Keep up the good work and take it easy. If you do too much it takes a long time to bounce back.

Barb

Robert, the new tongue is strange. It still feels too big for my mouth and I have a hard time closing my teeth together. I have a question for those of you who have had this tongue flap thing.... it looks strange. All white... will part of that sluff off (I'm guessing yes)? It just looks and feels so weird right now.

I've had a little harder time this weekend. My doctor's office didn't get my pain meds called back into the pharmacy, so I went from Tylenol w/ codeine to just plain Extra Strength Tylenol. It just barely takes the edge off the pain. I'm torn, because I like being off the prescription stuff, but the regular stuff just barely cuts it. Is not conducive to eating, walking, talking, etc...

Jennifer

Jennifer,

I recently had lunch with a survivor who had a tongue graft very similar to yours. She said that hers was white at the beginning and eventually turned to a normal color. I'm not sure how long it took. If you would like to contact her, pleae email me privately and I will help you get in touch with her.

Jerry

Thanks Jerry! I just don't know what to expect. The front part is all loose and strange looking. I called the doctor and they're going to check it out tomorrow. I'm hoping they look at it and say it looks fine.

I would love to speak to your frend. I've just sent you an email.

Thanks again!
Jennifer

Jeniffer,

I started answering you before and the power went out. Big storm here in the east.

Anyway, I sent you an email and an auto reply came back. You must have used your business email. I sent you another one from the link here.

I had given Eva a heads up about you and got an auto reply from her, too. I forgot that she was going away and I'm not sure when she returns.

As soon as I hear from her, I'll give her your phone number, if you email it to me.

Good luck tomorrow.

Jerry

Thanks Jerry! Just sent you my phone number. I really appreciate the contact. It will be nice to speak to someone else who has had the tongue graft. The swelling is starting to go down, and it's finally starting to feel like I don't have half my arm in my mouth. I can close my teeth together a little easier.

I had to go back to the Tylenol with codeine to sleep last night. I kind of felt like it was a step backwards, but keep reminding myself it's more important to manage the pain right now.

Take care and I hope you are still doing well.

Jennifer

Jennifer,

I hope this post finds you home from the doctor with good news. I, too, have been reading Tonya's posts and am having a hard time with them too. Who said grown men don't cry?

Take the codiene as long as you need to. No need to suffer. I probably stopped too soon.

A laptop is a nice convenience. Wish I had had one. I had my surgery on 4/6 and was back to work (on a modified schedule) on 5/3. Needed a nap every night that week. The next week I had a full schedule. But don't forget, I did not have a tongue graft. Take as much time as you need. Fatigue sets in very rapidly.

I will email Eva again with your phone number, now that I have it. She may be away for a week, but who knows, she may check her email while away. Here is a link to her web site where she discusses her cancer and an organization that she founded: http://www.evagrayzel.com/red_balloon.shtml

If you can, check out the whole site. She is quite a remarkable woman.

I'll be praying for good news today.

Jerry

Hi Jennifer, So happy to read that you are home. The trach scared me a lot. As far as the tongue graft, I had about 2/3 of my tongue removed and replaced with a flap from my left arm muscle and then a skin graft from upper thigh. The flap always felt tooo large for my mouth, especially in the beginning, it rubbed against my teeth. I just had it sewn down again in the middle where it had lifted a bit (I had initial surgery 3 years ago). It is much better now. It still is kind of white but better color than in the beginning....Lots of positive thoughts and prayers for you, Jennifer, you are doing well. Take Care, Carol email me if you want

Hi Jennifer, So happy to read that you are home. The trach scared me a lot. As far as the tongue graft, I had about 2/3 of my tongue removed and replaced with a flap from my left arm muscle and then a skin graft from upper thigh. The flap always felt tooo large for my mouth, especially in the beginning, it rubbed against my teeth. I just had it sewn down again in the middle where it had lifted a bit (I had initial surgery 3 years ago). It is much better now. It still is kind of white but better color than in the beginning....Lots of positive thoughts and prayers for you, Jennifer, you are doing well. Take Care, Carol email me if you want

sorry for the double post!

Thanks Carol! I just sent you an email. Jerry, I will go check out Eva's website.

My doctor's appt. went great! The surgeon trimmed the loose part in the front off and said the rest of the graft looks great. He also took out a couple of the stitches that he said looked like they would "bother" me. All the while he kept saying "I'm not hurting you am I?". He is such a sweet man. I just haven't had the pleasure of being around many doctors with his bedside manner.

He also looked at my arm, leg and neck/chin stitches, and trache. He said everything is healing great. Sure was good for my morale. :-) I still have a ways to go, but things are looking up!

Jennifer

Hi Jennifer, I am so happy to hear you had a great doc's appt. My doctors are kind and very caring, it makes things so much nicer.
I checked out Eva's site. She seems like an amazing woman. Keep looking up! Carol

Hi Jennifer
I'm so pleased to hear that you are healing well, don't try to do to much with your arm until the scars have had time to heal, I tried to be clever and part of the wound split open and of course the scar is bigger than it needed to be. 8 months on and everything healed super. So take care of yourself lady...
Sunshine...love and hugs
Helen