Wife resisting follow up care

Last spring my wife was diagnosed with synovial sarcoma. In April she had a wide resection followed by six weeks of radiation. Her oncologist told her that she would need to receive an MRI every three months for two years, but her radiologist said every six months. So far it has been five. Three weeks ago she developed pain near her lymph nodes on the leg where the tumor had been. This week she began walking with a limp. I keep telling her to get an MRI. I've been in contact with her primary care pysician, her oncologist, her parents. my parents, her sisters and friends, yet she won't go back for her next round of scans. I am at my wit's end. So long as it doesn't spread and so long as we remove any additional tumors while still small, she's got a chance. If she ignores the symptoms she'll likely pass... and sooner rather than later. I know she wants to live, but is very concerned about our mounting debt. The housing crash wiped out our savings and put us into debt. Over the past four months, Blue Cross Blue Shield has denied over $30,000.00 in medical costs. Our parents will cover any cost that we may yet incur, but she has always been so independent. If only I could get her to the hospital, she has a chance of survival, but she keeps putting it off as if it's just one more thing on her "to do" list. Help!

No brilliant ideas, just another heart out there who understands how hard this is for you. You might have to do an 'intervention' where a circle of the people she loves best kind of corner her in the living room, and talk at her about how much they love her and will be with her through this and won't take no for an answer.  She might be just plain terrified and this is the coping.

Keep on keeping on. Keep on trying to see inside her.

Best,
Sarah

mom of Andy 27, dx gbm/pnet 1/09

(and yes, he sometimes makes what I think are not the best decisions... cigarettes, lots of coffee, no sleep. I try to encourage moderation but hey. You know? Quality of life issues. When it comes to chemo and MRI's though, there's no resistance. thank god.)

Thank you, Sarah. My name is Tad. I've been married for 9 years and have a wonderful 8-year old boy, who has no idea his mom has been sick. I've also got a stepson who happens to be one of my very best friends. He knows, as does every one else in our family, but he seldom talks about it. I thinks he's got fairly high hopes. His grandma has had three different kinds of cancer and has been battling them for over a decade. I've been reading about synovial sarcoma almost every weekday (I take a break on the weekend) and know that sarcomas aren't your "every day" cancer. I don't mean to be flip; I know all cnacers are bad. I'm not sure what I'm trying to say, other than it's with tears in my eyes that I read the posts of all the loving, suportive people out there who know what I'm going through and provide their care and understanding every day. I'm so glad I found this site. Thanks again, Sarah.

Tad

Hello Radish,

I am sorry to hear about your wife and everything you are going through. I think it's terrible that Blue Cross has denied bills, but I'm not surprised. I have worked in the medical field for years dealing with these kinds of issues. There should be an explanation of benefits with the denial reason and that will determine your next step. Sometimes it's as simple as a wrong code being entered by the hospital, which they can correct and rebill. Depending on the denial you can appeal and get letters of necessity from the doctors. If the denial is related to maximum benefits reached than you can apply for Medicaid and/or charity assistance through the hospital, it sounds like you would qualify.

I agree with Sarah that it may be your wife's way of coping. I'm sure she's scared about her illness and worried about the bills. I shielded Jay from the finances because he was worrying about medical bills being covered, other bills, etc. I told him I was applying for assistance and not to worry. I would suggest telling her what I mentioned above and not to worry about the bills, they must treat her and the assistance can go retro active. Please follow up on this as soon as you can. I think that may help.

I wish you the best, please let me know if I can help any further.

Take care,

Lori

Yes. It's what Julie (don't mention her name publically) has going through her mind that makes me saddest of all. She knows her odds, despite all her resolve. This morning as I drove our little guy out of the driveway towards school, Julie stood in the doorway with the most profoundly sad expression I think I've ever seen.

But it isn't time to give up. I've got to get her in for her tests and if we find anything, she has to get further treatment. Even if she's taken from us in the end, with aggressive treatment, she could be here for another five years... perhaps longer.

My stepson is 17.5. He's such a good guy. I love him too.

Tad

I'm so sorry, Tad. Sounds like an impossible situation for all of you. I, too, have no sound suggestions, except perhaps to assure her that medical debt has no bearing on homeownership or many other assets. And they can't bleed a rock. I lost an infant child many years ago, incurring $40k of debt along the way. I paid about $50 a month, which was all I could afford at the time, and after a short period of time they just stopped billing me. I don't know if that will ease her mind about money or make her more stubborn--that's your call. But to leave an 8 yr old motherless over moeny and independence? Seems maybe it's time to swallow both of thos fears and get that mri. You must feel so helpless. My heart goes out to you.