Very exciting day

[Newlywed]

WOW.. what a big difference today was in comparison to John's last surgery 2 weeks ago. For one he did not have dilaudin so no craziness like trying to pull things out.

His ng tube was removed so now he is using the g tube only for his stomach bile. That is much more comfortable for him. Also, while he was so afraid of the pain he actually got up with coaxing to sit in a chair and let me sponge bath him. His mind is back with a positive attitude.

I have not looked at the tubes and ileostomy bag as of yet. One reason is because he has a girdle around him still. So this is good because I need to build my mind to it. And so does he. We'll get there together and that day is tomorrow with the wound/ileostomy nurse coming in to show us a video and train us on the bags.

Now, I know don't jump to the next hurdle before this one is done. But that is impossible for me. I am a planner and I have to know all the steps to beat this stupid disease.

While I know there is a chance that we won't .. in my heart of hearts I truly believe that we can beat it together. No I am not being naive..

Tomorrow I get to talk to the nurse navigator for Baylor Dallas. She'll be setting appointments for us with a new oncologist with Baylor. I am excited because they work miracles. We have been adviced to go with the Mary Crowley research and they'll infuse the tumors with virus' to see what is going to work.

On the first report 2 weeks ago the surgeon wrote this was a palliative surgery because prognosis is poor. But he also told us he looked around and was surprised that the cancer was not as wide spread as he thought it was. He is not a surgical oncologist. Because his information is not in line with our oncologist that said he is still hopefull and optimisitc. But I figure it is time to get aggressive.

[karin]

NW,
you are doing all the right things and yes, it probably is time to get aggressive. I think Baylor is the place John needs to be, like you said, they are miracle workers!!

I am so glad this day has turned things around some for y'all!!
Luv to you,
Karin

[janklo]

See, now the worst is behind you. It's all gotta be uphill from here! John will get stronger, get out of the hospital and get on with treatment. Yes!

[Kathleen808]

NW,
It sounds like things are moving along positively. You're doing a good job of one step at a time and keeping up on things. I pray things at Baylor work out. You're a great wife.


Aloha,
Kathleen

[salysue]

One day at a time....it's all any of us can do.

[SoCalSaz]

You're doing great. I admire your strength and persistence and love!!

[jmarie]

Well it is so good to see you guys had a good day. I can't imagine how exhausted you two must be after the last few weeks. Hopefully this means he can start making his way home and continue to heal from the comfort of his own bed.

[SkiFletch]

Sometimes a little bionic man stuff is needed . Glad to hear things are going well with the stomas. Hoping they continue to get better and that you guys find what you're looking for at Baylor

[GreenLakeGirl]

I can't remember if someone else already mentioned this, but when you first see his ostomy bag, remember that the hospital-supplied version is often see-through and crinkly. The see-through part is great when you're in the hospital so the staff can see what a patient's output looks like, but at home, most people get an opaque version that leaves a little more to the imagination and doesn't make so much noise. His bag will probably have a straight, simple clip; there are other clips that curve to your leg to be more comfortable, and bags without clips (either disposable ones without a drain or a drainable version with a Velcro folding closure).

A video to get trained on the bag?? You two will do great!

[Nanette]

NW,

So happy things are looking up and John is feeling better. Take it one day at a time.

-Nanette

[clarabelle64]

It's all good Newlywed!! Lovely to hear that John is improving daily....
Clarabelle

[helen098]

glad to hear he's doing well
one day at a time ...keep fighting

[Terry]

NG tube is out, THAT's a big step to feeling better. I've put them in, removed them, never had one and don't want one. I'm sure he's much more comfortable.

Take it day by day, hour by hour and minute by minute.

Your in my prayers.