Marieka,
I'm confused. I thought you already were being treated at HUP. Why isn't the one doctor at HUP calling the other and getting you the appt. What dept is your doctor in and who is doing your surgery, dental or otorhinolaryngology? Since you do not have cancer, they might not give you an appt as quickly as some other patient, but I have always been given an appointment in another dept within a few days. I don't think any of the secretaries in otorhino ever answer their phone unless it's another physician calling.

I've been at patient at HUP since 1997 and have met your cousin although he was not my surgeon. I also spent a lot of time in the dental dept in 1997. I'm curious as to who your doctors are. Since we are not supposed to post doctors names on the board, email me the names of who you are seeing - [email protected].

Tkae care,
Eileen

Malka, you are soso right about both help for the husband, and allowing Marieka's mother to help.

My personal experience was this: I am older than both of you most likely, and all of my children are grown. My husband is a physician, and he is a loving, helpful person. But he had to go back to work at some point after my surgery. My sister came to stay with me. It was the perfect solution. I got dressed every day, and she knew just how hard to push me to eat and move. She also knew when to be quiet and let me doze, and when to suggest an outing, and when to try to think of something that I might enjoy eating or drinking. She brought her knitting (making me a prayer shawl, weaving her prayers for me into it while I slept!) She took me to the local doctors when I was scared, and we had a little outing every day. She greeted guests when they came. She came a couple of days after I came home from the hospital (I only stayed in the hosp. a couple of days...maybe not quite long enough.) and she stayed for 10 days. I cried when she left, though I was ready to take care of myself by then. I don't think I would have wanted to try to take care of myself during that time, nor would I have been able to care for children at all. And for your husband to try to do it all would really be stressful for him. You would find yourself trying to protect him by being an extra good girl and not being any trouble. I think you should ask your mother to come and share the duties. You can either set yourself up in the middle of the action, or put yourself in your bedroom away from things. I always liked to be in the middle of things. You can get a baby monitor to call, or a bell...or a cell phone. Give your mother the gift of allowing her to help, and give your husband some support by not allowing him to have all of the responsibility. You will perhaps need to go back to the dr. during this time....or you might think you do...and what will he do with the children?? (How old are your boys?)

Yes, let your mother come, by all means! If everybody talks frankly in the beginning and gets some things understood, it should go fine. This is a time when you have to let go and trust other people. They love you , and they'll do fine.

thank you!!! i am saying a lot of that lately and to so many! no matter the words, they are not efficient enough to express just how grateful i am to have found such caring people out there. to know i am not alone and to be able to get such wonderful advice and information is just amazing...

malka - thanks for posting and for your advice : )
hope this finds you doing well?
the whole mom thing has somehow seemed stressful to me but feel i should use my energy elsewhere. starting to think i may need her a lot more than i thought! plus, it never occured to me til the other day (in my new-found haze), that my hubby might really need her too. i did actually ask him (after i was crying how i would want to be alone - new found haze and depression mixed in) and instead of replying the way i thought he would, he said he wasn't sure? never expected that and i think for the first time since this started i realized, i am not the only one who needs some support (like you said). he may not be able to be strong enough for just everything and everybody (like the rest of us!) god knows he will be stressed and worried as well. so anyhow, even though my gut still is saying NO MOM, i think the big picture may have her in there after all. our little guys are hard enough already : ) please come back and talk again soon!!!

colleen - your list is AWESOME! keep it coming!
i think although we have never met - we have a lot in common in terms of our "thinking". i am very open myself and so far have not had a problem talking about it, of course, well, hasn't actually happened yet. i suppose, time will tell the aftermath. my husband so far has been wonderful and at every appointment. he will have a lot to handle for a bit but has always been thankfully great with the kids and the kitchen, so at least he won't be too shell-shocked. the only thing i guess freaking me out on the list is the aftermouth of my mouth. i can't help but think about it and even though i have seen photos on-line of course it is not the same. i am still mortified and dare i say disgusted. even though it will become a new part of my life and daily routine, i still cannot grasp it. i never even thought about him checking it for me, were there worries in the beginning? i did see here and there concerns about cleaning it right, infections and whatnot, was it hard for you? i am sure it had to take a lot to get used to. since you are farther down the line than i, how overwhelming was it and is it today? keep hoping it will be like all things unknown - you have to do it, so you do and get used to it. most of the time it isn't as awful as you imagine it, here is to hoping! i really loved your list, it was so wise, realistic and compassionate. thanks is NOT enough : ) don't worry about swarming me with info, i need all i can get to prepare and lucky you are out there to prepare me!!! marieka

COLLEEN, lol - you were writing while i was writing!!!!
i like the bell idea, finally a time i can actually get away with it : ) i know she is dying to help, perhaps i don't even have a choice but suppose i will give it a go. my boys are 4 and 7. they do know mommy has a boo-boo being taken out and was soooo upset when my older boy, ben, asked if i was going to die! i have been working hard since then to reinforce that this was not something for him to worry about. i am sure he picked up things, not to mention the feeling of our house in general and that makes me beyond sad. i was even thinking for now on in (besides quieter more private conversations) to perhaps not let him know when the actual surgery is until i am done in the hospital to alleve his worrying and let him enjoy himself at camp. the thought of his fear is far worse than my own. i am worried how this will effect us all and maybe my mom would be a good distraction (at the very least the house will be clean!) anyhow, will need someone to hand over the good drugs!!! my next appointment is the 11th with the surgeon and will get my surgery date then. feel like i am kinda living in short term. want to cram in as much summer as possible beforehand - not to mention eating everything i love... talk soon, hugs, marieka

MALKA! JUST SAW THE COMMENT ABOUT MY MOM CALLING HIS MOM - ACTUALLY IF I DON'T HEAR BY WEEKS END GOT ONE BETTER. GOING TO HAVE MY GRANDMA CALL HIS MOM, BETCHA THE PHONE WILL BE RINGING THEN : )

Marieka--I'm so glad we are helping you to face this surgery. It's a big deal, for sure, and the more info. you get, the better prepared you will be to cope. I can tell that you are spunky, and you will do fine. I wish you didn't have to go through it, but maybe this can be your biggest life-challenge, and in that case, take it!!

OK...Starting at the beginning...As I said, I had little preparation, and no prosthodontist consultation, so I went in "bare." We arrived into Shreveport for a 4:00 appointment. 5 min. later, he knew what he needed to do (I'm a pretty classic case, I suppose) and at 7:30 the next morning I was in surgery.

(There were some sagas connected to the hospital stay too, but that's another story....such as their not being able to tell my doctor sons where I was after the surgery. They had trained at this hospital and they ranted and raved until somebody found me in the burn ICU...)

You will not have a neck dissection, so I don't need to talk about that. You will be swollen, and bruised....not a pretty sight for sure. You will have the surgical obturator installed....probably wired or stitched in in some way. You will have gauze packing in your sinus cavity, and I suppose that your nose will not be open because of it.

I could talk. I was afraid to drink or eat. I didn't know what had been done in my mouth and what the current situation was. I was afraid of choking. I had an iv, of course, so it wasn't vital that I eat and drink, but nobody came and taught me that it was ok. The make-shift obturator was so painful, jammed into my jaw joint, that I had difficulty moving my jaw to talk and , later, to eat. You won't have that same problem.

My surgery was on a Wed. morning, and I was released on Friday morning......a little too soon, probably, but all of my family are doctors...my husband and three of my four sons...so I guess they felt that I would be ok. I was ok, but nobody made certain that I could swallow....and I couldn't because I was afraid.

Do not be afraid to swallow, though you have to do it carefully at this point because of your nose being packed. It's tricky. TAke little sips.

Here's a suggestion that I still use: Get a small mister bottle.like for plants or laundry and fill it with clear water....Keep it handy for spraying into your mouth and throat. It gives you a bit of a drink without your having to actually swallow, and it moistens all your tissues and feels good.

Another suggestion: Get some Biotene mouth wash. It is made for dry mouth. Breathing through your mouth will make it dry and bothersome. I put some Biotene in another small bottle....like one you might carry hair spray in your purse in, and use it often..I still do....and distribute it around my mouth. It helps with the dryness.

Another suggestion: put some vaseline (or, my favorite is Mary Kay extra-emollient night cream...like fragrant pink vaseline) on your lips before surgery. Your lips will take a bit of a beating. Keep it handy at your bedside for after surgery.

(I still keep these three things by my bedside, and I carry another small bottle of Biotene in my purse.)

Another suggestion: Tell the anaesthesiologist that you want some anti-nausea medicine in your anaesthesia. I tend to get nauseated after general anaesth., and sometimes they automatically add the anti-naus., and sometimes you have to ask for it. It is expensive, I'm told. Just say you need it. You don't want to get nauseated.

An observation: As long as I was on the narcotic pain meds, my lips felt oddly numb/chapped. I couldn't make them comfortable. I've noticed this before. As soon as I changed from the strong stuff to non-narcotic pain meds, my lips felt better.

So...I could talk..and I had to remind myself that my body was fine. I could walk fine, though I kept forgetting it! The first day you will be groggy and hooked up to the iv.

The pain is not the same as belly surgery pain, but there is pain, of course. This is not small stuff! So do NOT hesitate to ask for pain medication and to sleep. It is not your job to entertain visitors!

When I began to try to swallow, I had someone stand near me in case I choked. I took very small sips, and I found that using a straw was easier than trying to transport liquid from the front to the back of my mouth. It was several days before I had the courage to try, and then I was still a chicken.

The truth is, it is a little easier to swallow at this point than later. Your mouth will be totally covered, and no food or liquid can "get lost" anywhere. I worried about that.

One thing to be aware of: Your jaw will likely be in a state of stress and will not want to open very wide. Ask your surgeon when you should begin to work on getting it open more. You don't have to worry about it at the very beginning, but after several weeks, you need to exercise your jaw to be certain that the tendons don't scar down and prevent opening later. At first I had to use a flat baby spoon to place food in my mouth, but I worked hard, and it got better and now is just fine. I still stretch my jaw opening a number of times a day.

At home, I was still sleepy, but I could talk and enjoy being around others. I didn't want my grandchildren around, however. I didn't have the energy for them.

I could talk on the phone, though my bad obturator made my mouth hurt after talking a while. People were amazed. Me too!

I came home on a Friday, and my sister arrived on Monday morning. I dressed every day, and we went on short outings every day. I was talking just fine...went to show her my church, and visited an elderly friend...to the drug store.

The next Tuesday, nearly two weeks after my surgery (a little too long) I returned to the surgeon for the next stage of the saga....the removal of the surgical obturator and the packing. I'll start there next time.

The rest of you wonderful forum readers, if you have read to the end of this, you deserve a prize! I am writing things to Marieka that I should email, but on the chance that it might help someone else, now or later, I am just going to post my personal stuff here. Please feel free to ignore it if you wish!

XO--Colleen

thank you. tearing up a little over the reality, but need to know. funny how the littlest details in life can suddenly seem so important. the helpful hints are terrific will be stocking up for sure (and totally sure no way i would know on my own!) will absolutely stay tuned and so appreciate the continuation....
off to bed (11:45 here) work tomorrow and payroll to do (at least i pay myself : ) nighty-night, marieka

Marieka, I had worried that too much information might create problems. I think I'll give you a break. You have asked some very good questions, and I will answer any that you really want to know about, but I don't want to give you things to worry about. I want to comfort you. I can't, however, do what I really want to do, which is to make it go away and take away the reality of it. I just want to assure you that you WILL make it through, and that there ARE ways to cope with the details.

You've asked some good questions about the future which you don't really need to know about now, but if you really want to know, I'll be glad to answer. I presume that, since you are wondering, you want answers.

Let me know what you most want to hear about.....what you need now to feel better prepared. Too much information might just be upsetting and overwhelming. I don't want to do that to you!!

Let me add one nice note: Before my surgery, I was a singer..not professional, but a good, trained amateur. I sang at church, doing some solo work and helping with the children's choir. I had just established a city-wide audition-only chorale and we had had our first concert when I had my surgery. A nerve was damaged in my neck that damaged my voice, and I thought I would never sing again. I was bereft! I DO sing now, not quite at the same level, but I do well, and I cantor at church, alone, and I sing some solos, and I am loving my music again. One of my jr. singers looked up the other day and said, "Miss Colleen, you have the most beautiful voice I have ever heard." I know that she isn't a true judge of musical talent, but it meant the world to me to hear that!! I just wanted you to know that life goes on, though changed in some ways,and solutions are found, some easier than others.

Later.XO--Colleen

Have a great day! We'll "talk" later.

XOXO--Colleen

thanks for your words, as always! kinda crappy today, long day, no sleep, blah blah blah. cannot wait til baseball season is over and overwhelmed that school is about to let out and gonna have to find a way to change schedules all over again! apparantly, there is a 2 week gap between school and camp, in usual circumstances, would have this all taken care of way before now! in addition, this sunday is the adoption picnic. it is once a year and all of sam's (my little guy) birth-family comes (like 30 of them!) they are awesome (and the whole experience is amazing every year) again, have not even planned how to feed them all - another thing i usually would have done before now! house is a mess, making it worse just a general feeling of outta control, grrrr. i know, give myself a break, unfortunately, the rest of the universe just keeps on going! tg tomorrow's friday! read your last post and appreciate your concern. i am ok, and i truly feel the info gets at least that issue somewhat in my grasp. it certainly makes me sad, but at the same time it's a whole lot better than having it all be one big surprise! listening to you, further down the line, with your upbeat attitude, proves to me that life will go on (differently, but still the same : ) don't feel like you have to use "kid gloves" i can take it and you are only helping me (even if it feels like you are giving me gloomy info at times!) just wanted you to know this, cause i don't want you to be concerned. i can tell you are a wonderful and caring person, who would never want to hurt anyone, the fact that you take so much time to help others is something you should be proud of : ) as i am sure it helps you, it sooo helps others! how great that you sing, not one of my talents (actually i am an artist, or at least trained to be) it is always so awesome to find a niche in the world that you are not only good at, but feel good doing (if you can spread the passion to others, even better!) thank goodness you can still enjoy it and share it with the world!!! off to bed, sleep tonight, maybe... talk soon!
marieka

Colleen,
Your posts are wonderful and insightful. I think many will benefit from reading them as they are! Mom's DX and TX while totally different, we used a lot of the same suggestions.
You rock!
Marieka,
Don't make yourself crazy in regards to the party, it will all come together, and from what you've told me you have plenty of help right near by--ask them to help you--it will get their minds busy on something else besides you! Have fun Laugh a lot--it makes you feel better. I think everyone here will tell you that. There is a thread on here somewhere about laughter being the best medicine--can't recall where and my computer is acting up, someone will probably tell you where. Some of it is a little warped--which makes it even funnier down the road!
Love,
Donna