Re: Bad cancer news a few days ago. UPDATE 6/15

[Precision]

First thing first. Those who know me and know the wife on facebook, PLEASE don't mention it there.

Problems with her ex-husband and for some other reasons we are not publicly out with this information yet. Her kids know, our parents know and a few other people -- but I need a place to vent.

SO.

A year and a half ago the wife was given a 6-18 month death sentence. She was told the cancer in her brain was going to kill her soon and tough shit. We didn't agree and found a doctor who KNOWS how to use a gamma knife machine. Short version, no cancer in the brain since. AWESOME.

However, the cancer in the lungs, they were uninterested in and despite us fighting the good fight, the insurance company would not pay for the similar surgery using Varian Edge to remove the tumors from the lungs. She was put on an estrogen blocker pill that made the tumors decrease by 50% and was working great. In an insurance snafu, she was forced to go without the pill for 8 crucial days at roughly the 11 month mark and the doctors "forgot" to tell us the drug usually stops working after 12 months. We just got her checked out because of symptoms -- a cough that would not go away. Long story short, the tumors in the lungs have been growing quite well for about 4 months and have sent seeds to her bones, her chest lymph notes and worst of all her liver.

Needless to say, I am pissed. If we had gotten the lungs treated properly, the odds of being here would be MUCH lower. If we had known the drug's efficacy window we would have done a CT scan at 10, 12 and 14 months and wouldn't be so far behind the curve.

In just under a week we will get a new drug that most likely (75%) will work for her. It will roll back the cancer a bit. Decrease tumor sizes and pause them for about another year. May or may not stop them from further seeding. Once that stops working, there is another drug that will do effectively the same thing. Barring a miracle, it looks like I have 2-3 years with my wife.

I am investigating doing a Go Fund Me to pay cash for the Varian Edge. I am sick that I didn't think of that the first time.

The Varian edge will eliminate / greatly knock down the stuff in the lungs, the small amount in her bones and the lymph nodes. I can't get any good information on the liver. Very little in side effects and even if it can't fix the liver it will give her much better quality of life. Difficulty breathing now, coughing like crazy and can't lay flat due to external water build up outside the lungs making her diaphram do flips. Down side is over $100K.

When she agrees to go public, I want to do the Go Fund Me and have the procedure before waiting the 3-5 months for an insurance approval / denial. But that brings up an ethics question.

My plan is to say we have been denied before and assume will be denied again. What if we are approved and get the money back? Attempt to refund a few thousand people $20-50. Write a disclaimer that if we do get reimbursed, we will post it and offer refunds to any one who wants them? State that if that happens money will be used for other medical and daily life issues of a stage 4 cancer patient?

I am not thinking completely clearly and the wife and I do NOT want to be perceived as working an angle / grifting. We are not. Just two people in love who are working hard to keep her on this earth for as long and as healthy as possible, for that time.

Any prayers, suggestions, criticism, whatever are greatly appreciated. Like I said I am not level headed with this, too fresh, too new and too ANGRY.

Again please no mention of this off the forum. I will let you know when we go public and when / if we need bandwith for the message.

Thank you for letting me vent. It helps a little.

[Rumpshot]

Wow. Thoughts and prayers for you and Dawn.

I knew things were not all going well, from the sparse fb posts, but did not know it was going this far south so fast.

Keep us up to date on progress.

[Precision]

It is a shit sandwich wrapped in leprosy skin for sure.

You will be kept posted and thank you for caring.

[BDK]

A) My uncle had good results from using a particular brand of shark cartilage on an aggressive lung cancer. It sounds a bit goofy, but it worked for him. Sharkilege was the brand

B) no idea on the ethics stuff. My gut says donate it to a good cancer research charity.

[blackeagle603]

Prayers up for wisdom, resources, great counsel and caregivers, hope, and healing.

I know everyone has their own chicken noodle soup recommendations so I apologize up front but recent reading has me wondering..
You being a foodie, have you considered a ketogenic diet to stress glycogen loving cancer cells? <I'll move along now>

[Weetabix]

First off, I'm sorry to hear about all of this. Prayers sent.

When she agrees to go public, I want to do the Go Fund Me and have the procedure before waiting the 3-5 months for an insurance approval / denial. But that brings up an ethics question.

My plan is to say we have been denied before and assume will be denied again. What if we are approved and get the money back? Attempt to refund a few thousand people $20-50. Write a disclaimer that if we do get reimbursed, we will post it and offer refunds to any one who wants them? State that if that happens money will be used for other medical and daily life issues of a stage 4 cancer patient?

My suggestion is: state the facts, then combine the options. Something on the order of:

- all funds will be used for medical expenses/patient life issues,
- if we're reimbursed by insurance, we'll post that and honor refund requests in the order received until the amount we raised equals the amount we were not reimbursed, or until XX (60?) days after the posting about the reimbursement (have to set a time limit to keep refunds workable)
- if after the XX days are past we've raised more than the amount not reimbursed, we'll use the money raised for other medical and daily life issues of a stage 4 cancer patient

That way, it's clear and people know what they're getting into. If you're reimbursed, they can get refunds if it's important enough to them. People who don't need a refund know they're helping you with some part of the whole thing.

Post a link as soon as you get it set up.

Thank you for letting me vent. It helps a little.

Dude. We've all vented about smaller issues than this. Supporting each other is part of what we're here for. I sincerely hope it gets better.

[Netpackrat]

Crap. Really sorry to hear this news.

[Darrell]

Thoughts and prayers for you and yours.

[Cybrludite]

First off, I'm sorry to hear the news, and y'all have my best wishes and though I'm not the praying type, I'll say some "to whom it may concerns" just in case.

I agree with what Weet said about what to do with the money in the event of a reimbursement.

[Precision]

Prayers up for wisdom, resources, great counsel and caregivers, hope, and healing.

I know everyone has their own chicken noodle soup recommendations so I apologize up front but recent reading has me wondering..
You being a foodie, have you considered a ketogenic diet to stress glycogen loving cancer cells? <I'll move along now>

the wife has tried that. She has trouble staying in the zone. Something to do with her metabolism / thyroid and it didn't seem to do much. She is doing diet based things, though I am not sure what they are exactly. I support her efforts, as all might help and nothing she is doing is crazy enough to harm her.