AN Newbie

[nancyann]

Hi Sheree & Don:  So glad to hear from you.   Yes, the fatigue is horrible.  I was the same way.   9 months out & I am so wiped out after work still.
                          Let Don know this is the norm.  How are the headaches ?   Mine were also constant for weeks.  I remember while at the appt. to
                         get out the sutures, having to take my extra strength Tylenol, I took them round the clock every 6 hours,  wish I could have taken it
                         more often.   Hang in there guys, this is the bumpiest part of the road.
Take care, Nancy

[Omaschwannoma]

Sheree,

Glad to hear (?) all is moving forward with Don.  So, your help leaves soon....remember you are never given more than you can handle.  You have been there for Don since the beginning and from the sound (?) of it you have handled "everyone" with your best efforts.  You do need encouragement and know through this forum you receive all our support as we know it is our loved ones, friends that have gotten "us" through the worst by just being there.  Remember Don's recovery will be progressive, but probably he will tire of it not moving fast enough (silence can be golden when you are at a loss for words to "fix" it).  Your shoulders are broad enough to carry the weight of a new beginning into Don's retired life from the military, by the way, thank you Don for all you have done by serving our country.  My son-in-law is Army SF deployed as of this moment, and very proud of his accomplishments.  Be sure you take time for yourself Sheree as you are very important to Don and his recovery.  Take a day off during the three-hour naps to do whatever!  Weeeeee!

[palms0@hotmail.com]

Sheree, Glad to see your Don is feeling better. We really need to talk, what is it with all these DONS having an's and side effects??? See our story under an community section those attending in july topic. We are living a paralell universe. It seems your Don has had even more side effects than mine. Me being positive with him even tho I don't feel very positive has really helped him. I never let him see me get down, but Karen is right when you can rest, do because it is very hard on the caregiver also. We will keep you in our prayers.
Mary Ellen and Don

[ppearl214]

Sheree...sending you and Don continued wellness wishes and huggles. I know that being the "caregiver" can be so difficult and exhausting and yes, overwhelming, but know we truly are here for you..... please hang in there. You're doing a fantastic job and Don is so truly lucky to have you.. and as for Don... please send him my best wishes and healing huggles.  It's the initial hurdle and hoping things will calm down and really start pushing forward now.

Both of you are doing great! Hang tough!

Phyl

[pearchica]

Sheree and Don: hope this finds you somewhat on the road to recovery- I am keeping you in my thoughts and prayers.  Hang in there!  xxxooo Annie

[Rob7]

AGAIN I am just overwhelmed on the support you all have for us...it is just mind boggling...I hear from you and feel the support way better than some family members...I guess because you ALL understand this all too well.
well the appt went well yesterday..the stitches and staples came out just fine..the shunt is set at a good number.  we got physical therapy slips for speech and for walking, which we will do in our home town. we had an xray done on his arm (where the last iv was located) it feels like a catheter was left in there...they say no it is just dried blood to put a hot compress on it.  I requested another throat test be done..because of the choking..it is much worse. they said all is the same as from before and that he needs to just SLOW down on eating and not necessarily eat all the same foods..eat proteins and quality food and allow the throat to heal.  he is just not a patient patient...as you all know. he would love to blink his eye and be healed..slow is just not settling well with him, even though his body is screaming at him to slow down.  i am just the warden as he calls me.  the kids are pretty stressed out from all the change and well I could go on and on you all know.  Anyway he is on CON leave for 6 weeks and then we come back here to Birmingham may 15 for a scan to see what the rest of the tumor is doing and check the shunt and the usual follow up stuff after sugery.  So we head back to the house..three hour drive.  After our second attempt to get my mother in law to the airport..the weather in tx prevented her to be able to fly out and connect all the way home.  take care and thank you again for all your kind encouraging words and prayers...I APPRECIATE IT!!
sheree

[nancyann]

Hi Sheree:  Well, let me tell you, from an 'impatient'  ex-New Yorker,  he WILL LEARN PATIENCE whether he likes it or not !!!!
                Since a young kid I was always very impatient, but since this happened to me, granted it took several months to
                work its magic, I have become more patient than I knew was possible !!!!!    And it's a feeling I've come to LOVE !!!
                I don't rush when I'm driving anymore, using the motto 'when I get there I get there'....  It's great to take the time
               to enjoy people, nature, etc.     Right now Don's probably so confused & angry over this whole episode (at first I was grateful
               to be alive,  then the anger set in...  all the steps you go through in dealing with loss...  then acceptance...), he doesn't want
               to know patience,  but he will, believe me.
               Funny the medical people mentioned for him to eat slower,  I was a MARATHON eater myself, everyone always said to me'slow down, what's the rush?'  lol

Send him all our good wishes & also to you my friend;   Keep a peaceful heart,   Nancy
               

[Jeanlea]

Hi Don and Sherrie,

I've been reading your story as it unfolds.  Happy to hear that you are heading home again.  I agree with NancyAnn.  Don will learn patience.  There is no other way.  I used to always be in a hurry for everything.  After several months I have finally learned to stop doing that.  Please remember that both of you need to rest.  Even caregivers can get tired out.  My family was big enough that they spreadout the caregiving time. 

Continued good wishes coming your way.

Jean

[Stevey]

Sheree,

I called my wife the safety monitor.  LOL,  I like warden better, It was rough on our little one when I got home, strict no toys left on the floor, my dogs were driving me nuts and I was stressful for My wife Susie, but she hung in there and she is out at Ann Taylor hopefully doing small damage to my credit card right now, I tell her to go decompress now that I am ok being on my own at home 8 wks post she stayed home with me for one week and I have been driving three now, watch out on the roads!!.  Don will be back to normal eventually.  Nancy ann is right the patience is kinda forced on you.  We implemented a movie night on Susnday nights to give the kids something to look forward to, tomorrow night:  Happy feet.  watchin those penguins will be like a flashback to my first steps after surgery slow wobbly steps and then sliding on my belly.  Yikes!!


God Bless and take time for yourself if you can,

Steve

[Rob7]

good morning
he sure has had a rough road with this coughing thing... he got to coughing/choking last night and finally had to just go to sleep to get away from it..with out dinner or anything more down his throat.  It frustrates him SO MUCH.  We are a very active family and are always on the move.. poor don just had a hard time yesterday keeping up..he slept through the movie that we took the kids to.  and finally agreed to drive one of those carts at target so he didnt do so much walking.  It is hard for us to slow down to let him keep up also.  We really should have just gone home at some point and let him lay down, but before you know it the day is gone.  His facial nerve is finally looking like it is healing, some movement is coming back a bit at a time.  thank you for the ensure idea.. he did lose some weight but he wanted to so we are ok with it still coming off as long as it is slow and not because of malnourishment.  hopefully we will get the ball rolling with speech therapy and physical therapy today. take care ~ sheree

[nancyann]

Hi Sheree:   WOW!!!   I coulnd't even THINK about going to a movie, let alone do ANY shopping, etc. the first 3 weeks !!!!
                 I remember having difficulty with choking (mainly it ws on my own saliva or when trying to drink fluids), this also
                 will get better with time.
Hang in there guys !!   You're in my thoughts,   Nancy

[Rob7]

we have physical therapy and speech therapy tomorrow wahoooo... I need him to understand his throat better so he does not continue to choke on everything (even air)..
the doc just called me to talk about this choking/throwing up thing we are going through.  I guess it must be a combination of the vocal cords regenerating and coming back and him coughing TOO HARD therefore he is causing it to be a fit and then throwing up THEN causing his head to KILL>>>  he is napping right now..a good thing!!  I would like to convince him to nap a couple of times a day but he wont hear of it..uugh!!  "the warden" comes in and says then sit down...  I am sorry to sound like a meany especially when i say it is hard for him to keep up with us...we should really slow down for him..the kids (4 of them) have a hard time just sitting around and waiting for daddy to nap..thank God for the pool!! but like i stated before we are a very active family and he is the ring leader and it is very hard for HIM to slow down and listen to his body to know that enough is enough and he should just sleep.  he teases about a hammock but hey not a bad idea then the kids will feel like they are with him and he is resting..ok I have rattled on long enough again thank you for your support and we are alive and doing better so things are good!!
sheree

[nancyann]

Rattle on sister - glad to hear from you !!
                        Good luck tomorrow during the therapies.
                        Sounds like Don is one DARN fighter !!!!! It's a good thing to, he needed it to get thru all he did & is still going thru.
 
Keep the faith !!!!     Nancy

[Obita]

Hi Sheree and Don:

I remember hearing this from my surgeons like it was yesterday:  "resting and naps heal.  Do it often and not just 5 min. cat naps.  As you get further out from surgery, the naps can be shorter and not as often.  Listen to your body!!"

The first day home from the hospital, I did not listen.  I had survivor euphoria and cleaned out drawers, cooked a big dinner, went outside for a walk etc...big mistake.  I was fine but down after that for a week from my "so glad to be alive and home day".

Good luck tomorrow and give Don a big hug from all of us.  Kathy

[Rob7]

hello all..
therapy went well I guess...they just evaluated him yesterday and just plain wore him out.. He was feeling so ill all day today trying to regain his strength.  They didnt even do therapy just testing to see what level he was going to start at.  He is pretty out of balance and his throat is off too (like we didnt know that) but nice to have experts begin to help him out.  they are thinking twice a week is going to be a good start, don is not too excited about doing it because it is in a town 30 min away and it just wore him out today.  They suggested all sorts of ideas on how to eat better without choking...he is not too excited about eating anymore  He is either choking and worried about making a scene in public or picking that wrong food to not be able to get down smoothly.  they want him to slow down and he doesnt know how to do that,  I am hoping time will make this easier.  he seems so mentally, physically, emotionally, all those things lacking.. I feel for him and wish there was something I could do for him.  He is so pushing me to begin selling real estate ( i was able to pass my state test while he was in the hospital) but I am so afraid to leave him to just rest and not do too much...  I dont have 4 kids I tease saying I have EIGHT..he is worth more than one.  I have been reading some other threads and think don is feeling alot of the same things as the others.  He does have a problem with noises too...I see it more when we are in the car and all the kids are talking and the movie is playing and I am trying to talk to him..he just gets OVERWHELMED and I have to stop everything for him to regain himself..  I think the popping and sounds in his head is driving him crazy too.  he is having horrible head aches...that goes away too right?  he told me that he wanted me to check on this site info regarding headaches and what to expect...They have him on 4 pills of dilantin a day I suppose for fear of seizures...now he has to worry about gum disease..   when people ask me how he is doing I tell a short story of how he is and then just say HE IS A LIVE and we are truly blessed.  he is still overwhelmed with the amount of people that are still helping us.. we had a guy come by the house today to see about the tree damaged in the tornado that needs to come down..and we are being quoted over a grand to do it...well this guy turns out not able to do it either...too close to the house and hanging over the house. BUT just the fact that there is a volunteer group here in enterprise cutting down trees for free is just awesome.  I could go on and on with the help out pouring our way...but of course I still feel like I am drowning I am hoping it levels out soon.  well thank you for listening and reading an update on DON...  i do hope he does get back on the computer but he is not interested in it at all anymore.. he is even giving me his lap top (where I have one already) for the office where I am going to hang my hat!  i see a personality change in him, I guess that happens also. 
Take care,
sheree