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second opinion in Southern Oregon needed

9 years 1 month ago #34540 by clueless
I was going to report here yesterday but was too tired.

First we went for the scan - to find out that 3 Rivers had failed to give us drinks George was supposed to drink to color the images. We had to reschedule for tomorrow morning, early, which has me driving in the dark again - I have glare sensitive eyes and driving in the dark is not a good thing. But I will of course.

All this time now since George got home from the hospital there have been food issues - first severe constipation (very painful) and then nausea at the sight or smell of food. All I managed to get into him is chickenbroth with rice...and not much of that either.

So, off to the doc we go. George's condition is fine except that he tires very easily - a couple minutes of rest (sitting down) restores energy. Reminds me of the way I felt when I was severely anemic years ago...but he is not anemic I am told.

We tell the doc about the nausea and he says to discontinue the antibiotics. Then explains that George doesn't need them unless there is an infection. But - now he prescribes Cipro. George leaves a urine sample.

We go get the cipro, pick up dinner at a salad bar and a one person pizza (he likes Pizza) and head home. The DR. office calls and says there is no sign of infection in the urine and no further tests were made. They say to take the cipro anyways.

It doesn't makes sense to us to take a powerful antibiotic such as cipro when there is no infection in the bladder and no catheters are used. George hasn't started the course yet. But we have the salad for dinner and George finally eats.

At 3am he gets up hungry and eats the pizza and goes back to sleep.

So I assume that all the hell he has been through in the last couple days was due to the antibiotic's side effects.

Anyway, I picked up the pathology report and we have papillary urothelial carcinoma, high grade, focal and superficial, prostatic involvement present, musclaris propria present, no associated epitheleial lesions, lymphovascular invasion absent.

So while at the doc's I suggest sending to Hopkins for a second report. He doesn't like the idea, after talking admits he does understand why I would want this, and says we need to go to the pathology dept at 3 rivers to do so. Which we will do when we are there again tomorrow.

After that conversation I didn't bring up the second opinion, but I will on Monday when we see him again. At that time I will try to get an appt. in Portland, not sure how yet but I am sure it will fall into place.

So that's the story so far. It helps me to write it all down here - somehow gives me a better perspective.

Thanks for reading.
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9 years 1 month ago #34524 by clueless
It's 4 am. George is sleeping nicely and he had a good day yesterday. I'm getting in a few hours of work before we take off for the hospital at 8 am.
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9 years 1 month ago #34521 by mmc
Glad to hear it (walks, no burning, ...)!

Also, you have the absolute right attitude about your plan and the docs potential reaction! George comes first. You sound like a great advocate!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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9 years 1 month ago #34516 by clueless
We told the doc about burning yesterday - and as of a couple of hours ago it is gone George says, and his urine is clear now also. :) We go in for the scan tomorrow, and see the doc after that for checkup and also Monday for results. I'll pick up the pathology tomorrow while George gets scanned, and the rest of everything on Monday when we are in town for doc. I will see about sending things to Hopkins on Monday also.

I think I will also tell the doc tomorrow what I am going to do - and hopefully he will be supportive. If not, I can't help that. George matters here, not someone's ego.

George is getting very chipper now that the burning stopped. :) We just went for a walk - great weather, and we have a beautyful garden and a couple ponds - a little piece of paradise here. He loves it and so do I and we enjoy the walks a lot.

Seeing him so lively and happy again is just wonderful...and gives lots of hope and strength to the both of us.
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9 years 1 month ago - 9 years 1 month ago #34510 by Patricia
First of all call his doctor and tell him about the burning issues when he pees...he may have a UTI. Don't hesitate with this.
Secondly there is a lot of assistance out there..financial and otherwise. There is Angel Flights which takes cancer patients to appts for free.....check out this page for other assistance if you qualify.
http://www.ontopofcancer.org/cancer_financial_insurance_legal_drug.php
pat
P.S. also on this site
http://www.bladdercancersupport.org/index.php?option=com_weblinks&view=category&id=31%3Afinancial-&Itemid=103
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9 years 1 month ago #34508 by clueless
There is no doubt that he will go either to Portland or San Francisco for at least a second opinion once all the test results are in coming monday. That was always the plan.

But no way is he driving 4 hours by himself, (longer from where we are, we live way out in the boonies, some 40 minutes drive out from Rogue River, which is the next town) and I can't fit 10 hours of driving, 8 hours of work and a hospital appointment into one day, even with a flexible schedule. So we will have to fly there in the morning one day, go to the Hospital and fly back in the eve, and I put in my 8 hours of work at night. That I can do, 1 1/2 hrs to the airport, 1 1/2 hours flight each way, so that's 6 hrs of travel instead of 10 and gives me 4 more hours to work. George has a very small pension and my income is needed.

I am not sure if the insurance will accept treatment in a center away from here. I will have to check. Either way, we can get a second opinion. If the insurance can pay (I think they will), I may be able to find a person to take care of all the animals here (another expense) and go stay in a hotel in Portland (another expense) and work from there if necessary. I can work from anyplace with internet access and quiet, but work I must, especially with all the expenses I can see looming in the near future.

The good thing is that I can work from home or anyplace and the hours are flexible. So he gets constant home care, and I am always aware of everything he does, and I can always hear him, unless I am deep asleep of course.

A heck of a lot of obstacles in this thing...
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