Still fighting

15 years 6 months ago #20927 by Leigh
Replied by Leigh on topic Still fighting
Dear Julie,

I read with great admiration for your inspiring dedication to Dick's healthcare in your role as loving wife and caregiver.

Wow you both really have had an action packed time with your granddaughters with wonderful memories to cherish.

I think about you both often and wish you and Dick well and long may those quality moments you share continue.

Leigh....

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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15 years 6 months ago #20923 by Clara
Replied by Clara on topic Still fighting
Julie
Sounds like you and Dick had a fun week and made lots of memories for those granddaughters. Please do share pictures when you get them.

Glad to hear about the chair and keep Dick as active as you can.

It is so hard staying at home every day. I am still working at getting Bob out just to ride some.

He slept almost all day yesterday and has today too but I can understand that since he had the chemo on Thurs.

Good Luck with your Dr. and I know you are on top of everything.

Prayers and Love
Clara

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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15 years 6 months ago #20914 by Stephany
Replied by Stephany on topic Still fighting
Thank you so much, Julie. You are a light for me to follow down this tunnel. I'm going to print off your email with the suggestions for food.

I just talked to him, and he said that he ordered a stir fry last night that was horrible, but he did eat the rice, and he's already ordered breakfast. Let's hope it's better.

Simple is soooo right. If only we didn't have to do the complicated sutff to simplify! We have tile floors in most places (because of the dogs), but may need to put some in the bedroom.

We got our new bed, but it's so complicated that I was up until 1:00 last night trying to figure out all the buttons.

Then the dogs needed to go out at 2:30, then Doran called at 4:00 and said "what would you do if I took a shower?"

hmmmm....strangle him, maybe? For calling me to ask? Deep breath....

Told him to call for some pain meds, and I tried to get back to sleep on that new expensive bed.

Anyway, this morning seems better. My shoulders feel like I've been hunching them for 24 hours. I'm going to climb on the treadmill and try to work out some kinks.

Let me know how Dick likes his scooter. My folks have two. And their mini-van is fitted to lift them in pretty easily. Just takes time.

And thanks for the suggestions on the disability. We have an interview set up early in September. and I'll tell Doran what you said.

Stephany in Iowa

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15 years 6 months ago #20909 by Julie
Replied by Julie on topic Still fighting
Stephany, Thanks for letting me know that Doran was on up to 60 mg of Lexapro. I believe it is a medication that he has to start low and work up to higher doses. They wanted to know how long he had been on 10 mg and it will be 4 weeks on Monday. Since he did have a good response it has been increased to 20 mg.
Dick is getting Zofran by pill as a generic. It was prescribed because Dick had no appetite and complained of a feeling of fullness and nausea. He had two different bouts with vomiting. This led the oncologists to tell us that this is caused by the cancer.

When Dick was in the hospital the dining department worked with him on things he could/would eat. They recommended a Carnation Instant Breakfast drink that was like juice with some protein. He liked it and could drink it when he couldn't eat some meals. This is supplied to hospitals and can be ordered online. I still have a few left from his hospitalization in June. I also got some samples of protein additives and coupons for Boost which is a food supplement that he will drink.

Dick says he got some pictures of the girls but hasn't downloaded them yet. i got one or two of the girls with their grandfather. When I download them I will attempt to put one up here.

We are already on Social Security so Medicare is primary and we have a supplement that is excellent. The new power chair will not cost us anything out of pocket according to the vendor.

When applying for Social Security Disability the Doctor's statement is key. They need to state that a person cannot work for at least 12 months are longer. Also it helps when interviewed to stress problems with activities of daily living. Don't minimize any problems. People do get disability on the first application but the documentation needs to back up the claim.

it feels like I am constantly trying to simplify our lives. Having the pain Doctor closer to home will be a big help as it is a 15 minute drive instead of 45 minutes. I have a list of things I would like around the house to make life a bit easier such as a walk in shower and hardwood floors instead of carpet.

I hope your Doran is released soon and back where you can keep an eye on him. Julie

Volunteer Coordinator
ABLSC

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15 years 6 months ago #20906 by mrscarpediem
Replied by mrscarpediem on topic Still fighting
I can't tell if I'm crying right now for the changes and huge projects you are having to coordinate...or if I'm crying at the thought of a 9 year old having the maturity and courage in her heart to face a topic even I was too scared to face...reach out a hand and just offer help.

On the ramp...consider mentioning it to your church group or other groups. We have built them for members before at my tiny church in NC and I just know there has to be help out there for you.

The day trip you had with the picnic sounds like a fairy tale montage of fantastic memories.


I'm still just so touched at picturing your granddaughters helping out and asking questions -- still learning and still caring.



Hold the memories close...those are days to treasure.

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15 years 6 months ago #20902 by Stephany
Replied by Stephany on topic Still fighting
Julie, what a wonderful outing! How brave you two have been. You are a beacon for me to follow.

I'm so glad the Lexapro is working. I wanted you to know that at times Doran was up to 60 mg, before his second surgery, so if they suggest a higher level, it might help. And the longer he takes it, the better it will get.

I am going to have to ask Doran's doctor about Zofran. Is Dick getting pills or injection? Is it for nausea and vomitting, or just for appetite? Doran's appetite is still pretty much non-existant. He ate just a few bites today.

I called him tonight, and he said he had ordered a stir-fry, but I don't know how much he ate. I wish I were there, but I'm here, and doing laundry, and making a "nest" for him to come home to. The nurses are doing their best, and he sounded pretty good when I talked to him. I left him his cell phone, so he can call me.

Your grandkids sound wonderful. What a joy they must be to Dick. Does he take pictures of them? Maybe he could post some on this site, with his own picture.

Keep doing those things he likes, and good luck with getting the wheelchair and ramp. We've gotten a new bed, and I put together a new patio set for him to use when he comes home. Our son came home today for a few hours to start the basement remodel for the new hot tub. I just hope he stays healthy enough to use these for a while. Just to see him home and sitting on the deck would be wonderful.

Tell Dick he is a great example for my husband.

Have you filed any disability claims with SS? Or is he on SS already? If this is too intrusive a question, feel free to ignore. I just filed on line for disability yesterday, and have an interview set in September.

I'm glad you found a doctor closer to home, too. That should make things easier.

Hang in there, and thanks for posting!

Stephany in Iowa

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