Flying Into a Cancer Countdown

Sometimes in life you get to fly.

You stand on a surfboard and balance on the wave. Your skis sketch the powdered surface of a mountain, barely touching the snow. You sit at the bottom of a pool in a warm, watery silence like a jellyfish in a soft, safe blur. You lie on your back in a meadow and feel your soul moving with the clouds to the sweet smell of grass. Or you just hear the music of your child's voice who, for the moment, is entirely, 100%, happy.   

Oh hold on. Terminal Cancer! What? Really? Me? Oh. Actually, maybe not. Or maybe so?

There is a time here in Virginia, USA, where the earth stands still. 
It only happens once in a summer, (not every summer), after a rain, the clouds are so thick, the sun is so bright. But the sun is only in the RIGHT spot for this event for One Day. 
As the sun sets, the entire landscape turns a bright neon yellow.  The plants, after the rain, are happy and breathing and growing before dusk. But you can SEE them grow and breathe. 
Like an old English legend where animals can talk on Christmas Eve--on this day, you can hear and understand the plants. But the entire sky and EVERYTHING is bathed in a completely impossible shade of neon yellow.

My husband had forgotten the years before. He watches too much news, so the intense neon glow made him worry.

Me, I stepped out away from the house. I could feel and hear the plants and trees growing, just as I have done before, just as our people in Kansas can actually hear the corn growing. Been there, done that, very cool!  


With two steps off into the grass and with an eye on the sky, I was flying, growing with the plants around me in the thick cloud neon bright grow light wonderland that happened for a moment that I could step into.

You would think, as a terminal cancer person, that every minute counts. It DOES, but sometimes it doesn't count for much. With a hubby and kids you just ride the wave a little. Some minutes are spent cleaning out the dryer filter. Some minutes are spent trying to unclog the drain. Eleven months to live. . . I still need to vacuum the house.  Kid flips attitude for a day. . . that's one whole day in my countdown, not many of those left.

I know that I need to focus on my family
But I can fly so easily. . . just one step into the grass at the right light and I'm there.

Hospital-ity vs Hospital-y: Did the USA's Deep South Escape the 1980's?

"Southern Hospitality" is very different from "Southern Hospital-y." 

In my last blog on June 10, I happily exclaimed that I would start the coveted clinical trial the next week.  Wrong again!  Delayed again!

I have been working since May 13 to get onto a clinical trial at an out-of-state hospital in North Carolina. The trial is for Nivolumab and Ipilimumab, which are pretty effective (and FDA approved) for other cancers, but have unknown effects for ovarian cancer, so us "ovies" can only get these drugs by guinea-pigging for a clinical trial.

The closest trial site for me is out-of-state in North Carolina.  On May 13  I met with the NC doctor, submitted my blood for tests, and signed all the papers to join the clinical trial.  

When I did the same for clinical trials at the University of Virginia, I could start the trial usually within the week. At UVA, they can take and interpret blood and radiology results in 3 hours or less, and the doctors and nurses are OK with that, so anything you need to do, you can do it ALL in one day.  

Not so in North Carolina.

Until tonight, I looked at the early 1980's as a socially embarrassing time. 
In the 80's I lived in San Francisco, cell-phones were rare, but people in suits would walk down the sidewalks of the financial district talking on their pre-flip-phone phones as a bragging status symbol. The projected idea was that their business deals were so important that they could not wait for a 2-minute walk between the lunch spot and the office.  But us locals were unwilling audiences to the phone conversations on our sidewalks, and quickly surmised that the expensive phones were used mostly for image, zero content.

Yuppy women! Admirable suits. Great hair, trimmed fanatically, was part of it all. 
Guys were perfumed and decked out and had the clothes going. Gyms were still on the distant horizon, though.
Stay-at-home moms were labeled as too-stupid-to-be-professionals, and kids went into daycare with abandon. Oooh! Generation X!

My family included a corporate raider, one of the guys that bought companies whose shares were undervalued, only to sell off the assets, essentially destroying any company whose shareholders couldn't do the math on their annual reports. But Raiding was admirable and intelligent and exciting back in the 80's.  

Cafe window, me in Paris 1989.

At that time, deep in the financial district of San Francisco, I was at grad school for an MBA. (Way back when MBA's were cool and impressive.)  Classrooms full of corporate raider wanna-be's.
But we also talked about cross-level, integrated-group teamwork, but in the 80's these theories seemed like a dream in the San Francisco corporate world that was so deep into hierarchical (and distinctly separate) levels of management.
Much like the 60's generation that pushed organics, us 80's people saw ourselves as the coolest! With progressive ideas that would be really difficult to actually implement. Cross-level teamwork management. Visionary but seemingly impossible. At the time.



The Cancer Center at the University of Virginia seems to have a successful integrated management approach  There is no sign of elitism from medical knowledge or abilities--the nurses are just as important as the doctors. But still, their focus is not about patting themselves on the back for how well they work together, but rather it's all about how well their patient feels and does, no matter who has to do what to make it all happen. They can cross-manage. Whoever can show or help a patient's need gets to do so in full force, and can rightly expect appropriate support on the patient's behalf from all members of the team.

They're all good. Different pay scales and education levels and experience and shoe sizes but they all respect each other, no fear, no power plays, no CYA, just sharing information that synergizes their abilities to protect and benefit the patient.  The patient isn't "kept in the loop," the patient IS the loop.      Us loopy patients respect that all the more.

Virginia 2015. What parts inside have changed the most?

North Carolina has been a whole different experience.  

What is that scary fence all about?

Half of the staff I met were excellent and accomplished and loving and cheerful. The other half did not smile, were bossy, condescending, and totally CYA.  
Enter a Cancer Center, knowing that you're terminal, with a positive, bouncy attitude (ME! The walking emoji! ) and meet a staff member that does not smile. Or laugh. Even if you throw them a positive remark that can only really be matched with happy agreement (Lovely Warm Day, isn't it?), many of them still have no smile or positive counter. 
Should I slip them a number for suicide prevention? Half of them seemed to show dissatisfaction with their jobs and life around them, exhibit continuous flat affect, and seemed to have disassociated feelings (if any) for their terminal patients. Under encouragement they would not commit to future meetings or tasks. Hmmm. . . Not quite the Southern Hospitality I expected from North Carolina.

My week in June at North Carolina when I thought I would start the trial (but didn't) was stuff made of nightmares.  I was proactive. . . but a little too much for them. 
Just being my own advocate.  Yay! Guacamole again!  Love it! It should have all been fine, just me getting into my treatment, involved and informed. Good Stuff, great involved patient.

In North Carolina, the pinnacle of poor treatment was when I managed to show up to an surprise (for me) appointment that was unscheduled (and not communicated), that included a narrow and terse woman who threatened that if I couldn't follow instruction, I could be eliminated from the trial. Oh, hold on, she appeared in my last blog as the "I don't know who I'm e-mailing" lady.
So now she's dangling it. . . She KNOWS, because I've told her, that for me, being on this trial is a life-or-death scenario.  My fault is asking questions from different front desks (blood labs and radiology).  
The threat from the head nurse of clinical trials was that I would be suspended for not minding protocol if I asked too many questions. . . by being my own advocate I was going against the norm.  The fill-in doctor tried to back her by starting to say that the hospital was so big it couldn't respond very quickly to anything, but he stopped short in his sentence (oops!) . . but not before he already slipped up and said it.  A Ludicrous Duo. With my life in their hands.

Maybe she should have asked Pickles!

 There were some funny parts. . . in one visit. I went in with a fantastic friend (who is really fun) but who also happens to be a super-top USA attorney and maybe I was wrong but I think that Nurse Crabby suddenly clued into that "uh-oh she got some skills in here" vibe. 
It was helpful for me that day.
And my friend, just lightly and conversationally (are Virgos ever really just in it for conversation only?), asked which side my liver was on. I have a huge ovarian cancer tumor perched on my liver. 
Nurse Crabby couldn't answer. Left? Right? Left? We all had a good giggle about it.  Hahaha.  Afterwards my friend asked, "She wasn't really a nurse, was she?"   
Yes ma'am, that's my top nurse in North Carolina.


     

But that hospital has a star employee, "Anna."  She wisely said, "Put that all behind you."
And now, having written it out in my blog, I can. 

Home is where the heart is.

On July 1st, SEVEN WEEKS after I initially signed up for the clinical trial with an estimated 13 months to live, I got my first treatment. 

For proper cancer care, I trust UVA. For clinical trial drugs, I go to North Carolina, and that's ALL I would go there for. But that's OK now. Go in, get drugs, leave.

Now it's time to get back to daily life. Liver is inflamed, probably just due to immunotherapy kicking in, and nothing to do with the huge tumor that's casually using it for a rocking chair.  But it's straightforward and I can deal with it. Must be that pragmatic 1980s training kicking in. 

Virginia July 2016. Nobody's going to undervalue MY big asset!

If you like balancing acts you might like this piece of my Canadian heritage. . .

https://www.youtube.com/watch?v=upsZZ2s3xv8

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!