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Don is home!

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

Don's swallow test was just fine and we came home this afternoon! Home Sweet Home!!! But wouldn't you know - had him in a wheelchair and all of his things in another wheelchair - had to wait at the hospital pharmacy for 45 minutes for prescriptions - but they had some musicians performing in the lobby area which was very enjoyable. I took the wheelchair load of belongings to the car, came back and got him and the scripts - it was quite chilly especially in the parking ramp. Got all settled in the car and it wouldn't start - dead battery - Geez oh Pete! Went back into hospital - got the security people to come jump the battery and they sent a rookie who had apparently never used jumper cables - we thought for a few minutes that Don was gonna have to get out of the car and show the dude how to hook em up. Finally - got that resolved and we were on our way home! It's always something isn't it?

We do not have the pathology report - I'm almost thinking about waiting to see if they call here - no news is good news right? A couple of days of some good home healing would be fine with me. We were so happy to hear that Bill and Freida will be going home too - how exciting!

There were four people on the floor with Don who had the same surgery - isn't that something? Everyone of them has basically the same experiences as all of the rest of us - never heard of esophageal cancer and then BAM -

Don coughs a lot and of course it hurts - but he is tolerating his soft food diet quite well so far. Hoping there will be minimal dumping - he hasn't had that yet or the vomiting. We have not needed to use the tube yet - just flush it twice a day. His pain level is also very good - doesn't need too much pain med so he's healing fast and for that I truly thank God and all of you who have prayed for Don.

CaptDave gave us a link to purchase a wedge for the bed and I ordered that just as soon as we got home. He is going to sleep in his recliner until that arrives. He could probably pile up pillows - but I think he's happy to be in comfy chair.

If anyone has any recipes to share for the soft food diet - I sure would appreciate those too - variety is so important and I am the least creative food person ever. I don't really cook (sure wish we lived closer to Loretta!) - I love doritos and coke - and that isn't on the list of ok foods for Don LOL.

I'm sure as we enter this new phase of the journey - we'll need your help and you know me - I'll be sure to ask - thank you all so much. We also appreciate unsolicited advice - so if you think of anything - please feel free to pass that along also.

Love and hugs to all of you and I will try to respond to the private messages (pm) within the next couple of days.

Again, thank you all!
Judy & Don

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

I am SO GLAD for you two! This is wonderful news :)

Home is a GREAT place to be after 7 days in hospital. I know Don's healing will progress quickly now that he's home.

We've just found the Ninja blenders. Wish I would have found them earlier. The Ninja comes with a 40 oz blender as well as 2 cups you can blend directly in for just under $70. Smoothies are made in less than a minute and so convenient in its own cup. We are adding vanilla protein powder for that *extra* boost. Couldn't hurt, right? :) The Ninja supposedly makes decent salsa too, so something in it for you too, Judy! Depending on the need of the day, Nick might even add a prune or two or three. Easy way to get the needed fiber and hide the prune :)

Nick's "staple" food since surgery has been single serving oatmeals. Even now, he goes back to the oatmeal if things aren't quite right with the new stomach. Thank goodness for the flavor variety or he would have been so burned out on them. Just FYI - a regular coffee cup was a normal meal for Nick for quite a while following surgery. It just "fit" the new plumbing :)

Again, I am SO happy for this news. C'mon NED!

Hugs and more {HUGS} to you both!

Terry

and thanks for the news that Frieda and Bill have gone home as well. I hadn't seen that.

paul61's picture
paul61
Posts: 1122
Joined: Apr 2010

Judy,

I am sure Don is happy to be back home again. Looks like William has already given you some good suggestions for food. Now Don just has to take it easy for a while and let the healing progress.
The important thing is to take things one day at a time.

Glad things are going well.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Judy:

What fantastic news that Don is home!!

I got mentally comfortable in the hospital with the fabulous care the nurses took of me, and I was at the same time anxious about leaving and sooo looking forward to getting home. But once I got there it was such a relief! So I think I know how happy Don is to be home with you, where it’s quiet, no one is waking you up every few hours, and he can get on with his recovery in peace and love.

Now Don has to remember (with your help) to eat slowly and not eat too much at a sitting. He’ll most likely forget one or the other or both of those things from time to time in the next couple of months and, as Bill said, he’ll have to remember to not stray too far from the bathroom for when that happens. But with your loving help and a gradual improvement in his diet (“gradual” is the operative word), his trusty wedge pillow, and increasing but not too strenuous exercise, he’ll be back in form in no time.

For me, the mantras have been “easy does it”, referring to everything in my life – especially for the first couple of months - and “2 steps forward, and 1 step back.” Because there will be minor setbacks from time to time, due either to diet, “digestive” issues as his new plumbing figures out how it’s going to work, or just medical issues that may crop up. But then, one day a couple of months from now he’ll realize that he’s eating close-to-normal size servings of almost everything he used to eat (but no seconds), the pain meds are a distant memory, and lots of other things in your lives are back to normal. Many things will be a “new normal,” but his cancer and the surgery won’t be as constantly on your minds as they are now, which in itself is a nice realization. I’m still trying to wrap my mind around the words “I have cancer,” but at least I don’t think about it all the time like I did at first.

So Congratulations, Don, on graduating from the hospital to Judy’s tender care! Let her spoil you, do everything the doctors say to do, and you’ll be literally back in the saddle before you know it. Just don’t let it get you down if sometimes things don’t progress as quickly as you might want, of if you have setbacks now & again. Remember, they really tore up your insides and it takes some healing before things adjust as much as they’re going to. I had the MIE, and at my first post-op appointment with my local GI doc I was complaining about a pain in my side and he said, “Look, it may have been minimally invasive on the outside, but it sure as hell wasn’t on the inside!” That really helped, and I use it to remind myself from time to time that there’s a lot of healing and adjusting for my poor old body to do (62 – well, not THAT old! lol).

We’re all pulling for you and looking forward to Judy keeping us updated on your progress. Keep your eye on the prize, and you’ll be in Sturgis on your new bike before you know it!!

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Hi Judy,

So glad to hear that surgery went off without a hitch, and I am praying for a clean pathology report too! I know first hand that the first few weeks after surgery can be difficult. Do you have a home nurse coming in to check on Don? Jeff had his surgery in Baltimore and we live in Philadelphia, our surgeon suggested that we have a nurse come in and check on Jeff twice a week just to make sure we were ok. Jeff had the Ivor Lewis, so he had some major wounds to care for, she would come in and make sure that those were healing well. And in general would make sure he was doing ok with meds and drinking fluids (watch Don closely on that, fluids are tricky to figure out for the new system, our guys can become dehydrated quickly). So here are my suggestions for food.

First, if he turns his nose up at something that is ok, just try something else!

-chicken salad - FINELY chopped - I would use my food processor to get the chicken chopped very well. And keep it bland just chicken and mayo. At first I was giving him a 1/4 cup They can't eat much volume at first - but that changes over time.
-tuna salad
-watermelon seemed to calm his stomach and was a good source of liquid too
-sugar free puddings
-scrambled eggs
-mashed potatoes
-yogurt - this worked for awhile but then sugars were out for him
-carnation instant breakfast WITH LACTOSE FREE MILK - Don might be ok with dairy -Jeff is not
-benecalorie mixed in a sugarfree fruit cup
-soy ice cream

At first don't worry so much about fruits and veggies, that will come back with time. You really need to figure out what triggers issues for Don, he may have none and that would be great! If he does have an aversion to milk and sugar let me know, since I have been helping Jeff with that for 6 months now.

Best of luck!

Niki

sangora
Posts: 218
Joined: Mar 2011

I am so glad to hear that Don is doing well. Prayers that he continues on a solid road to recovery. Sam Stage IV

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Judy,
So glad to hear that Don is safe at home. Hope he continues to do as good as he is doing and that the path reports come back clear. I slept in my recliner for awhile when I got home but I was doing the tube feedings because of weight loss, so the wedge should work, I put 2 pillows on mine. Hope all keeps going well, you have been thru a lot both of you, now it is time to prop those feet up and be so glad to be together. many hugs,
Donna70

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Judy, so great to hear that Don is home. Home is where you heal. I'll write you a PM and tell you how we progressed with diet.

Keith did not have a feeding tube so it was incumbent that we get nourishment in him from day one.

Peace, Healing, Humor and REST!

Cora

Janet Runge
Posts: 37
Joined: Aug 2011

Judy,
great news My advise is take it easy and believe me he will slowly gain strenght and do great! I tried to push Charlie and this just does't work.

Today he had his 3rd pet/us scan --- COMPLETELY clear! He is 10 months post op.

Janet

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Great news Janet!!!

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Judy, I'm so glad everything is going so well for Don. What a team you are! Keep up the good work!
Angie

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

So happy for your good news, Janet!

Terry

sajanson hotmail.com
Posts: 4
Joined: Mar 2012

Hi Judy, my husband Mike, is having survery on Wednesday, you are months post op, can i ask specifics about what you went through?

sajanson hotmail.com
Posts: 4
Joined: Mar 2012

Hi Judy, my husband Mike, is having survery on Wednesday, you are months post op, can i ask specifics about what you went through?

sajanson hotmail.com
Posts: 4
Joined: Mar 2012

Hi Judy, my husband Mike, is having survery on Wednesday, you are months post op, can i ask specifics about what you went through?

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

Judy, It's great to hear that Don is home and doing well!! I'll try to give him a call in a few days. I coughed a lot when I first got home too. Didn't go anywhere without a pillow to hug.... One soft food that I really liked and is fattening was avocado. In fact i still eat several a week. As my surgeon told my wife and daughter "don't wait on him make him take care of himself as much as he can he needs to move and exercise". The guy is a college jock and never met anything that exercise and a can do attitude couldn't fix or at least help fix but, I cant argue with the results. Take care and all our love to you and Don.

Dave

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

So good to be home! Mom loved to sit in our recliner, the puppy stayed at her feet. Well, he was a puppy when she got here, we still call him the puppy.

Mom loved tapioca pudding and sometimes applesauce.

Take good care. Sending you positive vibes!! (Thanks for the scrabble games - they really help me to have a few minutes away from my grief.)

Ginny

monica_sss
Posts: 57
Joined: Dec 2011

Hi Judy,

I'm so glad that Don is home. Keep us posted on his recovery. Could you provide the link for the wedge? My Mom's surgery is this Wed. and I want to buy one. Thanks.

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

For what it's worth, I got mine at Bed, Bath & Beyond for about $30.

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

We would mix baby food with boulion in a blender for dad. And as William (I think) said, what works one day, may not be good the next. It is definitely a whole process. I am not creative either, but when I had to be for him to eat, it is amazing what you can com up with!

I got dad a foam wedge from CVS or Walgreens that seems to be working okay for him.

God Bless and keep your strong during this journey,
Beth
Daughter of Roy
T3N1M0
dx 6/2011
Ivor Lewis robotically 10/7/11
NED

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