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

Turkey and Grave-y

Picking out your own grave site when you have incurable cancer isn't expected or necessary, but I highly recommend it.
One spring or summer we drove to North Carolina, and a beautiful mountainside swept into view a cemetery that graced a breathtaking foothill. And I decided that that was where I wanted to be buried. But when I had to look at death as a more immediate event, a grave site closer to family and friends seemed kinder to all. Still, I kept a romantic notion of how a cemetery should closely fit a personal perception of beauty. 
I am trying to 'get all my ducks in a row,' so to speak, to make my death as easy as possible on my family and friends. It'll be hard enough for them without their having to tend to details of organization. Or am I just enjoying my last fun times of managing a project?    ( cough "Control Freak" cough cough )
Whose "personal perception of beauty" is best for a grave site? Mine or my survivors'? And does it really matter? I mean, REALLY?

Surprisingly, it didn't take long to find a closer spot to be interred. My neighbor-friend Susie took me out to her husband's recent grave. They have a husband-and-wife tombstone that carries both of their names, but Susie's date of death isn't carved into the stone yet. "We could always be neighbors!"  She made the morning lovely and fun. A wise woman with me at the graves.

I liked that place.  I LOVE my town, and this local graveyard is very much like my town. In microcosm. Except for all the dead people. (in the cemetery, that is, the people in the town are lively enough).  
In the graveyard, the names of my neighboring families surrounded me. This graveyard reflect my town's resistance to architectural committees or to tacky commercialism, or to any obligations of uniformity (Yay! Individualism Reigns!). And planting (even trees in certain spots) is allowed.
The surrounding Bull Run mountains aren't large, they would only qualify as hills to people from Rocky Mountain regions. But they catch the morning sun and radiate powerful calm as all mountains should.  I love them.  
 

"But. . . it's Episcopalian," I whined to my priest. No problem. He'd consecrate the ground as Catholic while they buried me. Do religious schisms delve within and last beyond the grave? 

I dragged my husband to the cemetery. He had been there with Susie last year to see her husband's new grave when I was too sick to join them. My hubby had, in his mind, already chosen this graveyard as a possibility for me before I showed it to him. I had no idea he had thought so far toward the technical details of my death. He had never brought my burial. Would anyone? Maybe best left to a wise, widowed friend. . . 

Then I had lunch with a few of my farm-girlfriends. "I just bought 5 plots."   "How much is your plot? Yes, that's a reasonable price."  "Oh I know where that is, It's pretty. But sometimes the road along there is a make-out spot." 
All of a sudden I saw that this whole grave-choosing process is actually as easy as making perfect cheese, but as such, it's only simple for some. 

This week, Thursday is Thanksgiving Day--a HUGE family-and-turkey-dinner-with-mashed-potatoes-and-gravy holiday in the USA (bigger than Christmas). My mom is here from really far away, not for the holiday, nor for her imminent birthday, but for me. She's here to help.

I had my mom follow me in her car (with her hubby), without either of them knowing their destination. We pulled up into the cemetery, and she parked after me. 
"We've been looking into a little real estate lately" I told her. 
She knows me, she feels me, she already knew.
She liked the place. But she also liked my 1970's teenage make-up and outfits as we did "ask-mom" checks before parties.    
What is the result of giving the answer you're asked for?    
Another wise woman beside me at the graveyard. We looked around, I showed her a few possible spots. . .

I sunk inside wondering how this unscheduled stop must hurt my mom, but I hoped it brought her a little peace, too. She smiled, I smiled, too. Not goofy smiles due to a lack of ability to acknowledge or express our thoughts, but quiet, strong smiles in patient acknowledgement of the tides of life.
 

I'm trying to ease the stress of my death, by planning for it, by doing a little of the footwork for it, which is comfortable for me but a little trickier for others. But there's a part of me that wonders if there is a small hovering thought emanating from my family and friends--or maybe even from myself--is she trying to control things from the grave before she's even dead? She's doing all of this stuff and she's not even technically dying yet.  

Yes, I'm not dead YET. . .