kris00j

Pam:
By the time I pay my mortgage and COBRA, my disability is gone. Are you supposed to pay hospital and doctor bills??? OOPS!!!!! Guess I missed that. The trouble is when I have prescriptions, electric, food, gas, travel, TV, internet, phone… yep. My savings are pretty much gone. Thank GOD I had some! And my COBRA goes up this month because the company I worked for has to renegotiate so we might be changing insurance companies. That ought to be fun. I was almost at my yearly cap and wasn’t gonna have to pay copays anymore. And then in Oct. I guess it will go up again? I”m already paying over $400. June should be around $500 or so per month.
Good luck! I’m going to look into all this next week I guess. So I know what to expect.
And thank God my parents have some money. I’ve made it a year, but I think I’m gonna have to start asking. At least until my life can get on an even keel long enough that I can get a job. I don’t know about where you live, but I can make $999/month and not affect my disability. And I can say “Welcome to Walmart” as well as the next person!
Check with local organizations, too. There are foundations all over the place that help cancer patients and their families. I have arranged for one here to mow my lawn, since I can’t. Not allowed to use the mower. They also give a donation to the cancer patients and/or families to offset bills, food, or whatever it is needed for. I’m sure you have some near you. I have to find the info for another one: they give gift cards for Walmart so you can buy things. And I think maybe gas cards. I’ve got to get on the ball and find these places. And I’m going to check out food stamps. Hey, that’s what they are there for, right?
I know with Lauren living with you some of this won’t pertain to you, but for anyone else reading this it’s worth checking out.

Pam:
Is she on disability? It’s probably easier to get one if she is. I don’t really know how to go about getting one, but I’m thinking about it for myself. Sometimes my feet burn a little too much to want to walk. It would really be helpful.
I think you have to contact the disability office to get one. Probably need the doctor to fill out part of the form. Maybe you can download it online?
I think since she’s a cancer patient you won’t have any trouble getting a hanging placard.

TS:
The tumor was discovered in Feb. 2011. Diagnosed in March 2011. I was going to a surgeon in Philadelphia. I didn’t like his odds the last time I saw him. So I called Dr. Fong at Memorial Sloan-Kettering in NYC. I got copies of all my discs and went to see him April 4, 2011. Went for surgery April 19 to implant a liver infusion pump and clean out lymph nodes, etc. Tumor was inoperable because it was wrapped almost completely around my vena cava. It has taken 2 of 3 arteries leading from heart to liver.
It responded well to Gem/Ox but my body couldn’t handle the oxalliplatin. I received a few doses of FUDR using the pump, but in reality the pump hasn’t been used much at all. I was scheduled for surgery April 4, 2012. But I got a lung infection and we had to postpone it. The tumor started growing again so I am now on Gemzar/Xeloda to try to shrink it a little more. Then hopefully surgery in June.
That’s the short version. I am not a candidate for any cyber knife or radiation because the tumor is right below my heart in the very top of the liver. But I looked into it!
I posted in another thread about anyone living in the area. There are a few of us. One near Easton on the Jersey side. One in Hamilton Twp. NJ. One in Baltimore, MD. And there’s another in this area that goes to Philadelphia. SallyPA is her screen name I think. Or close to that. I’m not sure where she’s from but it’s around here somewhere. If possible, I would love for some of us to find a centralish spot where we could meet and commiserate. An informal support group. I would like to get a support group started around here, but I don’t know that there’s enough people.
When I go to NYC I leave a few cc.org brochures on the tables for people to see. I’m on the gastro floor so I figure one of these days I’ll find someone who has this disease too.

So glad to hear your great news! I would say both of you have great news. One gets surgery. And although it is scary and there’s a chance of complications, it is worth it to get this horrible disease out of him!
And Liz, your husband’s tumors are no longer visible? That’s wonderful news! I just wish I could get my tumor that small! It sounds like he’s one of the lucky ones that react well to chemo.
These posts are what give all of us hope. Thanks for sharing.

My tumor started around 5x8cm and after 4 rounds of Gem/Ox it was somewhere around 3.5x6cm. So yes, hopefully your sister’s tumor is shrinking. It worked very well for me. I just wish I could have tolerated it better. We had to stop the oxaliplatin after 4 rounds. But it worked better than I had hoped.
I pray that is the case for your sister. Keep positive thoughts because positive thinking works.