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Update on Don - Terry, William, Paul, Cora, Bob, Niki, Sam, Donna, Janet, angie Sajanson, CatpDave, Ginny, and Monica

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Everyone!

Trying to catch up on the news on our board and wanted to say THANK YOU to each one of you for all of your encouragement and advice. Jude sent me some great ideas for meals for Don and I'm adding avocado to the grocery list I am making.

Monica - here is the link for the wedge (CaptDave sent this to us and I ordered it as soon as I got home Thursday - and it is on the way!) www.opentip.com/Health-Beauty/Alex-Orthopedic-body-wedge-p-1803323.html
The shipping cost as much as the wedge itself which is probably becuase we live at the farmost point from FOB point.

William - I will check out the sites you posted - Don has lost 4-5 lbs since he's been home and I need to get that in check stat!

Congratulations Janet! Good news is always soooo welcome here - as you know already - we all share in the good, the bad and the ugly here - but what a great group of new family and friends we have found in all of you.

Bob - Don is dreaming of that new Harley and the trip to Sturgis (so am I) I saw a new trike that BC HD had in their shop and tried my best to get him to buy that one - so much room to pack things on that bike - and who wouldn't like a reverse on their bike? Don is not going to buy a trike - he likes the leans too much - I do too - but man all that room for things...

Sajanson - Don had his surgery on 3/22 and came home 3/29. The enormity (sp?) of this surgery is nerve racking to say the least - but at least he could have the surgery and a lot of our pioneers have had it and are doing very well. We just have to find out what his new normal will be - this morning wasn't so great - but the afternoon was better. Our surgeon insisted that Don walk at least 3 miles each day beginning with the day of diagnosis and then he gave him a spirometer to practice with 30xday for three weeks prior to surgery. The stronger they are going into the surgery, the better recovery will be. Please ask any of our pioneers for advice - they are so much more informative than the doctors and there is nothing like good old fashioned experience.

Angie - I'm so glad to hear things are going better for you guys and the picture of the babies makes me smile everything I see them - their little fists in the air - that picture should be famous one of these days!

Ginny - I love playing games like Words with Friends and Scramble with you and Freida - great way to pass time and just 'drool' a little.

Sam - you are absolutely a legend! Your spirit is amazing and I think to myself everyday -how does he do it and stay so positive - you are the all-in-one - survivor, patient, caregiver, advice taker and giver - you amaze me and thank you for cheering on us newbies.

Donna and Paul - we love you two so much - your help and encouragement has been so comforting to us - this stupid cancer is so much easier to face when we have teammates like you guys.

Niki - thank you so much for your support - I have read all (each and every one) of your posts - you are wonderful to help and support us.

Our beloved Eric (Chemosmoker) passed away the day before we left to go to surgery and though we never met in person - he and Michelle became part of our family and friends also. I know that Eric and Lee are together in Heaven (Chantal says they used to talk about haunting her and Michelle!) - I can just imagine the mayhem those two are causing and they are lucky that Ginny's mom is there now to get the boys back in line before they get into too much trouble up there!

I think I mentioned that there were four people on the floor in the hospital (including Don) who all had the same surgery - I am 1,000% convinced this cancer is not all that rare anymore, unfortunately.

Don also is still having a horrible cough - occassionally productive, but he sounds like a barking seal and he says it does hurt his throat. His incisions look great. I am a bit concerned with dehydration - you aren't supposed to drink with meals - which are very small and not as often as I would like - but he isn't hungry and that probably makes eating more difficult also?

I've been sleeping on the sofa in the livingroom so I can at least sleep in the same room that he does - that recliner does not appeal to me at all but he seems to be okay - I'll be glad when the wedge gets here and I wish I would have ordered it sooner. Dave, if you happen to see this - would you send us the link for the inflatable wedge you found for traveling? I can look them up too - but you've already done the footwork so I'll wait until I talk with you again.

I MIGHT call for the pathology report Monday - but, quite frankly, I don't even know if I want to know. Hoping with all my might that the news will be good news. I'm sure each of you understand the feeling on 'to know, or not to know'. Don has been through so much already - I don't know how he/we would take any news that he would need additional chemo. Some of you have had to do that - but I sure hope he doesn't. I tend to worry about things I have no control over - but this is the first time in my life - I truly don't want to know unless it's good news.

Well, off the computer - time to flush the tube - we use bottled water here because our well water is so hard - and our room temp is a bit too cool for Don's liking so I have to nuke it a bit before flushing it through the tube - it must have felt like a cold internal shower the other night - so I won't do that again without warming first!

Oh - the things we never wanted to know - ughhh

Love and hugs to all,
Judy & Don

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

My heart is with you both wishing you the very best recovery.
Ann

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Judy,

All excellent news! Great reports are a wonderful thing :) Keep it up, Don! Slow and steady....

You're right - there is a wealth of info here. We have each found something here that keeps us coming back. I think you're right. It goes beyond the medical/caregiver advice. It's the friendship - the similarity of our paths.

With much love and many, many hugs!

Terry

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Judy:

So good to hear that Don is doing relatively well. The first few weeks are rough, because he’s dealing with physical issues in his body from major thoracic surgery, as well as nutritional and hydration issues as he and his new digestive tract get to know one another. But keep in mind what almost everyone says: you and he will figure out the food things and it DOES get easier and better. Patience is the key, and you just have to be comfortable with the “2 steps forward, 1 step back” thing, because it’s a reality and you can’t let yourselves get down if the healing and recovery take longer than you’d like.

I had kind of forgotten about the coughing – it sounds like his may be worse than mine was, but I remember keeping a pillow close so I would have it to hug when I started to cough. Ouch!

As for the path report, try not to think about it too much until they tell you. I remember well the anxiety of waiting for it, and when I had my 3 week follow-up with the surgeon and he told me the margins and all 28 nodes had come back clean, I broke down and cried from the relief. It's scary, but like so many things, worrying about it won't help anything. Try to remember to focus on things you can control, and leave the rest to God.

I got the inflatable wedge that I take with me when I travel from Sitincomfort.com (http://sitincomfort.com/wedgepillow.html). If you order one, don’t forget to order the hand pump at the same time (http://sitincomfort.com/fiairpuduaca.html) – I did, and had to make a 2nd order (and pay shipping twice). They also sell a foam wedge (http://sitincomfort.com/bedwedge.html), although I got mine at Bed, Bath & Beyond. So there are obviously several choices out there.

As for the trike: are you kidding me? I know the trunk and reverse are tempting, but a trike? Don’s right about the leaning – it’s better than a cage, but it isn’t a bike. There will come a time when the weight of the bike and pushing backward out of parking spaces are too much, but that time is in the future and then the trike will be the only way for us to continue to ride. But for young studs like us, “A trike? We don’t need no stinkin’ trikes!” lol

Hang in there, Don. Listen to your doctors, your caregiver and your other advisors and you’ll do fine. I remember my Carol reached out to the folks who provided the Joey pump and liquid food for help with food ideas, and it turned out they have a nutritionist who was great and gave her all kinds of advice, recipes, etc. And of course this board was enormously helpful to both of us. My surgeon is a great guy as well as a great surgeon, but he was a bit dismissive about the board (“Oh – anecdotal information?”). Yes, the advice we give is anecdotal, not medical, but that’s not a bad thing. We’re all dealing with things that the doctors do not deal with, so the technical and emotional advice we share here comes from experiences that we have had and they have not.

I’m sure you know that there are lots of folks here who are rooting for you, so just relax, be patient and let Judy take care of you. That’s the quickest way for you to get back into riding shape!

Take care,
Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

sangora
Posts: 218
Joined: Mar 2011

Am so thankful that Don is doing well and will continue to pray for continued recovery. I know that recovery is hard at times, but the worst is surely behind you. Sam Stage IV

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Judy, Bob, is who i got the inflatable wedge info from and I see that he has shared that info with you already.

That cough I remember it well. It was dry and it hurt but it seemed to get worse for a week or so then slowly faded away. My cough seemed worse when I'd go to bed so I continued on my pain meds at home only at night right before bed for a week or so after being discharged. It seemed to help me settle in for the night so to speak.

I wouldn't be to worried about Don;s weight loos at this point. I came home weighing almost as much as when i went in for surgery and all of my weight loss came after getting home. I am nicely positioned right now at about 180 to 185 which is a good weight for me and most importantly i am maintaining that weight fairly easily even with working out on a regular basis. As for dehydration two things that I couldn't get enough of were chicken stock and Gatorade. both help replace fluids and essential electrolytes etc.. as well as the chicken stock has some nutritional value as well.

One last thing that I might suggest is using distilled water to rinse Don's tube with. I also have well water and never use it to rinse my sinus or anything else internally. I just don't trust it to be as pure as I'd like it to be.

Keep up the great work and keep him moving and motivated.

Dave

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