Can Choosing the Wrong Shoes Reduce Your Life Expectancy?

I just had dinner with a newly-diagnosed lymphoma patient who had suggested a clinical trial to his doctor. His Doc strongly advised against it.  Good job.

What is the sound of one hand waving?

Clinical trials are best used for people like me, who have already pretty much run the gamut of standard treatment, and whose cancers are resisting all "normal" treatments. My chances of surviving cancer as a guinea pig outweigh the alternative, which is Surviving Just By Maintaining a Happy, Bouncy Attitude 
(aka "Static Wave of Vertical Springing Movements In Emoji-like Manner").  
I think Queen Elizabeth, God bless her, brought 'static waves' to an art form. She was Emoji-happy years before internet.

Newbies are wise to have clinical trials on their radar, but trials are really more of a last resort, not a primary treatment option. . .the stuff that your doctor orders is worth a try, and might have a 90% response rate. Trials don't know the response rate until after you've taken the trial, yeah? Could be 2%.

I finally figured out HOW to choose a clinical trial.
(If you're really interested in how-to details you can link to my pdf about Searching for Clinical Trials).  But suffice it to say that I chose the trial drugs I wanted, then found the closest hospital that offered those drugs.

There are a few steps to be taken before you get into a clinical trial. I think the first part is they check your sanity and ability to communicate. Then you sign the papers, get the blood tests, have a CT scan or a biopsy or whatever to prove that you have a nice cancer going. . .THEN you get to start the trial.

Hmm. . .looks promising!

So. . . I drove 5 hours from northern Virginia to North Carolina, and paid money for the clinical trial doctor visit, and the blood draw, and signed all the papers. The 'Financial Care Counselor' told me that if my insurance doesn't cover it, no problem, they'll put me on a payment plan that I can afford even if the bills get well into the thousands.  Happy Happy Happy.

Then came the stalling. . . The clinical trials team is facing a possible glitch in insurance, and say I'm the first self-pay patient they've seen. They say that the sponsor of the trial (Bristol Myers) demands insurance coverage. Then a couple of days later, no, it's actually not Bristol Myers, but rather their own hospital, that is having issues with my "self-pay."

But aren't I only responsible for paying for standard-care cancer treatment, and the drug company will pay for any extra expenses for their clinical trial drugs and extra tests?  I asked.

Yes,  they said.

So I cannot receive standard-care cancer treatment if I pay for it personally, because I'm also involved in a clinical trial? I asked.

Hmm. . . I think it would be hard for this hospital to justify that one. And they're evading answering that question.

Standard-care treatment for a broken arm is to take an x-ray and put a cast on it.
Standard-care treatment for the flu is to take your temperature and send you home with fluids and tylenol.
Standard care for cancer is a bit more complex, but it's all still according to the book.
Standard-care treatment is something that I did as a "self-pay" when I went in for my initial evaluation and doctor exam.  I am officially a self-pay patient in good standing now.
It seems that this hospital has lots of those.
 

Just trying to get treatment here. . .

So should I now be eliminated from a clinical trail because I'm a self-pay patient?  Does the National Insititute of Health support that? I don't know, but I doubt it.

It's enough to make your head spin

Head's up. . . if you have medical treatment in the USA, and do not have insurance but pay cash, they usually drop the bill down 25 to 50%.   Insurance, at a few hundred dollars/month, also demands you pay a fee for every visit.  So. . . If you see a specialist for $500, and your insurance charges you $300/month and a $200 deductible (fee) for that visit, you've just paid $500 cash to see your specialist that was "covered by private insurance". Get it?. 
But if you were uninsured and get the cash discount, you may only have to pay $250 total.

I have bigger problems. . .

Now that we have Obamacare in the USA we get fined for not buying insurance ("How can that be legal?" we ask. "Do we also have to purchase tea from Boston again?")  But if you're actually going to doctors regularly, the Obama fine + deductible + insurance bill is usually still more expensive than just paying cash with the cash discount (and affordable payment plans. . .us poorer folk have no hope of holding money "out" for a 12% return anyway). 

The clinical trial underlings were ready to denied me entrance to the clinical trial due to payment methods. So I took it up a notch. Then they weren't sure, then no. Er, yes. No. Dunno?
The woman who manages incoming patient finances called me.  She was lovely, clever, and kind. But she let it slip. . ."you could pay in advance for the CT scans. . ."
Is it your hospital policy to have patients pay in advance for standard-care treatment?  Blank. Switch subject quickly.


This North Carolina hospital has no record of my income, assets, taxes, finances, credit score, or resources.

I think that I was initially denied entry into this clinical trial because the trials intake staff are guessing that I'm a little financially shabby, and they're not allowed to ask if I am or not.
The answer would be "not," but they don't know that because they're not allowed to ask, yeah?
Now their Supervisor is looking-into-it-without-calling-me-back-as-promised. 
We've all met those ladies, right?  

I asked her about the self-pay policies, and whether self-pay precluded me from participating in a clinical trial there. We were all at that polite-but-taking-notes stage.
"We can't tell you ANY of our hospital policies," she said. 
Any? I thought. Really? Even the Slippery Floor policy?  I thought. Or the Fire Alarm policy?
"I'm going to e-mail someone to ask about our policies," she said
"Who are you going to contact?" I asked.
"I don't know." she said
"You're going to email them but you don't know who they are?"
"I won't tell you who I'm e-mailing for advice because I don't want you to contact them."   
Scary!
And THAT was the supervisor of the clinical trials team.  Not quite the Hope-Giver.

My life expectancy expiration date is July 2017, but my husband accidentally leaked out today that it's sooner than that.
One month of bureaucracy is 8% of my entire life (before hubby comment).  
In this month, my CA-125 cancer blood count has jumped from 95 to 185. 
In the time it took them to Not Act, my cancer load doubled.

I don't need to like this chosen North Carolina hospital. But they have the clinical trial drugs that I want, and I feel strongly in favor of my choice in clinical trials drugs. 
My Virginia hospital is lovely, but they are running out of FDA approved options for me, (we're on to the lesser-prescribed chemo that gains a couple of months, or hormone therapy which does not hold my vote of confidence at this stage, at this time.)
And my hospital doesn't have any immunotherapy clinical trials to offer. Darn it.

It just happened that I came as an anomaly to a private hospital that seems to be flexible, as are their fluctuating financial and terminal-cancer-caregiving policies.
But perhaps not so flexible if they guess you're potentially shabby.

Perhaps if I had spent a little less time working with my family and a little more time ordering shoes on Zappos I could have seen this thing through with more credible authority? I would have had the RIGHT strappy sandals instead of just color-coordinated flip-flops, reeking of poverty.

Unfortunately, my advice to cancer girls is WEAR THE RIGHT SHOES.   It might matter. 




Since I wrote the above, my lovely patient advocate got the ball rolling. 
Then the RIGHT person in the financial office called me a few days ago.
"This should only have taken a few days!" she said. "They should have given it to me!"

I got the call today. I'm in.  
A chance to be Not Dead Yet for a little while longer! (OK, only a 10% chance that  I'll respond, but it sure beats Zero!)

I should start my clinical trial Next Week!
And it's so hot outside that I'm going to wear flop-flops anyway.

Whatever it takes to keep cool, I say!

They cured AIDS? I Didn't Get the Memo

Somewhere along the line I have almost forgotten my goal, which is to be treated for cancer.

When you're first diagnosed for cancer, everyone around you, family, friends, medical people, all react very strongly. They're on it. 
You name it, they're there for you. Ask and it shall be granted.
And strangers jump in. They're there to help. Prayer teams just ask your name and they'll give you their all. 
Having terminal cancer isn't even a factor. I could have an easily-removable mini-lump and I think people would be just as supportive.  I LOVE all you cancer-supportive people. You give us faith in the entire human race, and your strength and positive outlook is so readily absorbed by those of us who need it. Keep it up, you're helping in so many ways that you'll never be aware of. Take it on Faith. . . and keep going.

As the cancer patient here, all of this confuses me mentally in so many ways. I feel like a superstar, but it's only because I've shown my mortality so blatantly.  That's OK. . . I love the help, I love the prayers, in whatever form they may take. They all work.

Yesterday I talked to an old close friend from my days in San Francisco. He has been HIV positive since the 1980's. Back then, I was reading "And The Band Played On," which is all about the beginning of AIDS (totally great non-fiction classic!). Which boasted Doris Ober as an editor.  Who is a heritage-breed goat associate of mine, and who kindly just mailed me a copy of her new book, "The Alzheimer's Years."  She's so on it.  And she writes brilliantly. . .
Doris is such an insightful writer of cutting-edge issues and writes so fluidly and engagingly. Get the Book!

Old San Francisco friends remember when AIDS was big, but ARC (Aids Related Complex) was considered to be somehow different and lesser. Then they decided that ARC was a bit silly, because it was really AIDS after all. Then, the byword was "HIV positive." And I lost it from there--I moved away to the boonies and became a wife with kids and different concerns.

So yesterday, with my newfound confidence, I was hoping to maybe tell my HIV-positive friend how to navigate clinical trials. I started by talking about T-cells with cancer.
It turns out that since the 1990's my friend was treated for HIV in a way that now he tests negative for HIV (and continues to do so).   T-cell stuff is old news.

Wow. They cured AIDS without my knowing? I don't follow the news, but you think that it would have passed along somehow? THEY CURED AIDS? Really? But then another friend implies  maybe not. . and he's a public health specialist in San Francisco. I can't wait until he comes to visit (late June!) to explain all of that.

So I still have stage 4 low grade ovarian cancer. Could they cure that also without my knowing?  YES.  Yes, they could. Some people just lose sight, lose the fight, or maybe just don't know how to keep looking. When you "sign up" for cancer, nobody sends a note in the mail saying "BTW we cured that". 

A decade ago I spent 2 hours per day with the ear-shattering screaming of a colicky baby, but a few months after these penetrating, hearing-damaging cries lightened, I met a parent in the local pharmacy with a similar child. Picking up their colic meds. Oh, they have stuff for that now?

I didn't get the memo.

I am resuming my attempts to find ways to combat my cancer.
Thank you, Julie, for such  a strong message of "Don't Give Up!"