"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!
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.
North Carolina has been a whole different experience.
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.
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.
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.
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!
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.
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! |
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. |
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. . .
|
