Cancer Care in Miami

Feeling like Shattered Glass from David Arsham 

So, here's the thing. You're 77, you have cancer and you have Medicare. So what does the wonderful American Healthcare system offer you?

Early 2010 

Your daughter announces her alarm that you have lost 22 lbs.

October 2010 

You get a chest x-ray to have surgery that you end up not having on your hand, and the x-ray suggests problems in your right lung, hey, maybe emphysema or COPD. Because of course, emphysema is unilateral, as is COPD.

December 2011 

You take too much thyroid hormone by mistake and while in the ER, just for the sake of billing, your attending physician orders an x-ray that shows NODULES in your right long. Oooooh, bad. Your geriatrician could not possibly care less. Like really, weight loss, stuff in your lungs, who cares?!

February 2012 

You start with a brand new geriatrician in ta new system of care (UM), Dr. Roos, but oops, he's going to retire and btw, he thinks you should get out more and poo-poohs the difficulties of social interaction with celiac disease that requires a strict Gluten Free diet, and oh, by the way, so many social gatherings revolve around food and contamination is this whole big issue if you have celiac disease.

November 2012

Dr. Roos retires and  Dr. Xxxxxx takes over. He's not worried about those nodules because who knows what they are?!

Interim period of total exhaustion, more weight loss.

April 2015 

You have a big GI bleed not once but twice after not following your hematologist's advice and taking salicylates, in the form of Pepto Bismol, Bismuth Salicylate. Your hematocrit falls below 30. 

May 2015 

You see a GI doc who orders a CT virtual colonoscopy, but hey, you don't really complete the instructions and you have too much stool in the colon to get a clear picture. But, whoops, what the hell are those nodules in your lungs?

July 30 2015

After prodding the geriatrician, Dr. Xxxxxx, you get a PET scan which shows WOW do you have uptake in your lungs and colon. Only look at that, now you have uptake in both lungs and gee, what the hell is that primary in your colon. Oh, by the way, what's that sitting on top of your kidney and adrenal gland. Hmmm.

August 2015 

You elect no treatment, just state you want pain management.

October 2015 

Recheck, hey everything is PEACHY KEEN. You so healthy!

_______________________________________________

First Week of  December 2015 

You: "Oh MY GOD, the pain in my chest is driving me insane. I am so scared this is cancer pain, the one thing I was afraid of," 

Geriatrician Xxxxxx: "Why would you think you have CANCER?" 

Me: "Because of the fucking PET scan that showed she had metastatic cancer?!" Nice version: "Remember the PET scan that showed she probably had colon cancer with mets in her lungs? Remember that one?"

Geriatrician Xxxxxx: "What PET scan? Oh, that PET scan. Hmmmm. What's your dose of Tylenol?

Second Week of December 

Consultation with the Concierge Geriatrician. We sign on. It's only $6000/year. Referral to high-powered Oncologist!!!

Third Week of December 

Referral to the utterly wonderful oncologist. Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Dr. Xxxxxxx at The Miami Cancer Institute! Motto: Fight, fight, fight! Bill,  bill, bill! "We need to figure out if this is even cancer! You look healthy to me! What do you mean fatigue and loss of 20% body weight? So healthy!

December 27 2015 

MRI shows apple core lesion in the sigmoid colon and "suggests"* primary colon cancer with perinodal involvement. Just an FYI, that's a constriction of the colon that looks like this:

Kind of distinctive, no? Like, not too easy to fit things through there.

January 4 2016 

PET scan shows nothing in the colon but WHOA those lungs, OMG the thing growing into the pleura and all that hot fluid, ouchy, ouchy!

January 14, 2016

Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Super Wonderful Oncologist Dr. Xxxxx wants to talk to you about your PRIMARY LUNG CANCER.

Me: "Um, I'm sorry but what about that MRI that showed the Colon Cancer primary and perinodal involvement?"

SWO Dr.: "Whaaaa? I didn't see that? Was that from UM?"

Me: "No, that was the one you ordered that was done on  December 27th?"

SWO Dr.: "WTF? (paraphrase)"

Decides to get two biopsies, lung and colon, and oh, btw, hypochondriac mama says she has clotting problems, so Dr. Wonderful Oncologist says she has to get platelet studies before biopsies.

Wait. Wait. Wait. Call. Wait. Told Off By Scheduler.

Beginning of Third  Week of January 

"All you need to do is go to Outpatient Registration. No appointment is necessary."

January 28, 2016

Me: Drag very fragile Mom (You) to Outpatient Registration at South Miami Hospital. They recognize she is so week they tell her to remain seated and bring all documents to her.

Transportation to Lab.

Wait. Wait. Wait. Apologetic Phlebotomist appears to ask who scheduled this appointment and then tells you that the blood for these tests can only, ONLY be drawn between 7 am and 11 am M-F.

Everyone apologizes profusely, OMG how did this happen, poor, poor sick Mom.

January 29. 2016

Return following morning at 9 am. Pre-registered due to staff's incredible sympathy for how awful patient looked day before. Sits at main desk to sign, wheeled to lab.

Phlebotomist takes you right away. Sits you in draw seat. Turns to co-worker:

"Before I stick this lovely lady, I just want to be sure about the procedure to send all those platelet studies to UM."

"I don't know. Let's call Xxxxx, our Supervisoer, who is on lunch break at 9:20 am.

Speaker Phone: "Oh, you have to schedule those in advance with University of Miami Hematology, to make sure there is someone there to receive the specimens and do the testing right away.'

Off Speaker Phone: "FUCK ME WE CANNOT ASK THIS POOR LADY TO COME BACK A THIRD TIME!"

Me.: Like REALLY.

You: groan and slump further in chair, in utter exhaustion.

"We are going to work this out. Could you sit right here with your Mom?"

Me: Looks at watch that says 9:45 am.

Door closes. FRENZY behind closed door.

10:05 AM: "Our supervisor got UM to agree to take the sample if it's there by Noon."

Interlude

Complaint to sister of friend who just happens to be VP of Miami Cancer Institute. Cue many phone calls, apologies, "Oh, things like this should never happen and will never happen again!"

Blood drawn, and you know after all this saga and all the complaining done about various parties that the tests are totally NORMAL.

Last Week of January:

GI Specialist says at pre-op appointment he will have to do sigmoidoscopy to get biopsy because lesion described by MRI is too tight for a colonoscope. Wheee! Easier prep!

February 4 2016

Sigmoidoscopy. Wait. Wait. Wait.

We Interrupt this procedure for announcement that friend of 28 years has committed suicide and left you in charge of finding home for her three cats and btw, she also had fish, which are now also yours.

Wait. Wait. Start to freak out.

GI Doc comes out to tell you that he was up and down that sigmoid colon and found no apple core lesion, no lesion period and not even bleeding or polyps and has the 97 photographs to prove it. Went all the way to the splenic juncture but NOTHING.

"That lesion?  It isn't there. I couldn't find it. If she has mets, it isn't from her sigmoid colon!"

Once again, it's not like you'd miss this because hello, hard to get past it without noticing:

Aside: My. Friend. Committed. Suicide. Second friend who was in Menninger Clinic in Topeka as a teen in the 1970's who has committed suicide.

February 11 2016 

Fill out boat-load of online medical history and medication issues that is promptly ignored later. Appointment with Dr. Xxxxxx, the Miracle Oncologist. "Dr. Xxxxxxxxxxx is great. He will stick needles in your chest!!!! We will figure this out!!!

Dad and Stepmom visit, Dad goes to talk to Mom. "It's a bird! It's a plane! It must be lymphoma! Most common cancer in Celiac Patients!!!! Let's tell her, because that's so awesome easy to treat!"

February 18 2016

Thoracentesis. "Ooops, didn't we tell you about all the fluid in your thoracic cavity?" Only 700 mL. No biggie." CT-guided lung biopsy.

Dr. Xxxxxxxxxx says "I really can't say it's lymphoma. We need cytology and pathology. She's probably going to need to be drained again. BTW, about that pneumothorax, she might need to be admitted overnight until it resolves.

Gluten free meal delivered for patient who hasn't eaten in 16 hours. Oopsie WHAT IS ALL THIS GLUTEN?

"What gluten?"

"The whole wheat roll and mashed potatoes with gravy?"

"OOPSIE. You meant gluten free without gluten?"

Dr. Xxxxxxxxxx: "Okay, she can go home if she goes home with you and you keep an eye on her, even if she's asleep, to make sure she doesn't have her lung totally collapse."

Me to You: YOU ARE STAYING IN MY HOUSE. I CANNOT STAY IN THE 80+ F HOARDER HOUSE WITH FLEAS OVERNIGHT WITH YOU.

You: Ugh! I can't stay in the hospital overnight, so okay.

February 22 2016

Dr. Xxxxxx, Miracle Oncologist: "It's a bird, it's a plane! It's metastatic cancer in your lungs and it probably comes from your colon! (Runaway, runaway!) We need to do exploratory endoscopy to proceed! We will call you!"

February 26 2016

Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Dr. Xxxxxx: "Did they call you? We were wrong! We don't know what is! It's a bird, it's a plane, it's probably just lung cancer, unless it's not and then I don't know!"

Me: "WHAT DO YOU MEAN?"

Dr. Xxxxxx: "Well, immunohistologenetics shows that they don't know FUCK about this cancer! (accurate paraphrase) So here's my plan: 1) Chemo and radiation, except you said you don't want that; 2) Radiation, except you don't want that and we don't know where the fuck to put it! (another accurate paraphrase); 3) do nothing and just have pain management.

You: "I might want to start some pain management. This really hurts!!!! Tylenol doesn't cut it!"

Dr. Xxxxxxxx: "Here, try this pain Rx for a patch that has this opioid. BTW,  we could do this blood test to see if your EGFRs are susceptible to treatment with this specific drug that might work for your cancer if what I think you have is what you have except I don't know what you have but maybe you have this rare thing because you look WONDERFULLY HEALTHY. Maybe I should have thought of this earlier."

Wait 45 minutes for blood stick and Rx script.

Take Rx script to Marco Drugs with badass clinical pharmacists who pay attention and have software that actually works.

"We cannot fill this! She's allergic to another opiate in this exact same drug class! It could make her have anaphylaxis! You need to call her doc back ASAP! It says RIGHT ON THIS PRESCRIPTION that she is allergic to Demerol! WTF! (paraphrase)"

Consult by text message and phone call with Clinical Pharmacist Daughter Who Graduated from Second Best Pharmacy Program in USA, and who is currently in Residency for Critical Care:

C: "I wouldn't give it to her. WTF is wrong with their software that it even let them generate that script!?!?!?!" Seriously? It really says she's allergic to Demerol right on the script? Like, I can't believe that. REALLY? OMG!!! WTF!!!!!!??????" (Paraphrase, but literally)

PA from Dr. Wonderful Oncologist's Office: "So since she can't take the Fentanyl patch and doesn't like oral pain meds, we thought Naproxen Sodium was a great plan."

Me: "Aleve? Really?"

PA: "Well, no, we want her taking the 250 mg pill instead of the 220 mg pill! Her insurance might cover it!"

Me: "So you want her taking an anti-inflammatory for her cancer pain?"

PA: "Yes! It should work if she takes it every 12 hours and doesn't care about her stomach, small intestine or kidneys anymore!!!! (paraphrase)"



Saturday, February 27 2016 

You: "I don't know what kind of cancer I have and whether I should try to treat it or if it's a waste of time and effort and feeling sick versus feeling totally horrible from treatment. By the way, this Aleve+ they prescribed isn't working. I don't know what to do anymore. Every week they tell me something different- colon cancer, lung cancer, colon cancer, lung cancer..."

Me: "I have nothing. LIKE, NOTHING AT ALL. I don't know what to tell you, Mom. I support whatever you want to do, because the only thing I can say is that it expresses cytokeratin 7 and isn't Non-Hodgkin's Lymphoma."

You: "And this is what happens when you can pay for healthcare?"

Me: "Yep. Best healthcare in the world, Mom!"

________________________________________________________

* "Suggests" is a great way to avoid legal liability for being wrong or being right but about the wrong place or the wrong presentation or whatever the f*** is not right there.


© Bright Nepenthe, 2016

I Love You Judy, But Goodbye...

When I was a child, my parents regularly took me to concerts, the ballet, the theater and even the opera. Often I was the only child in the concert hall. It didn't feel odd to me, though. I was used to being the only kid around a bunch of adults. I was an only child, and a very, very nerdy child. I was already hot for Tudor history at age 8, after seeing Anne of a Thousand Days with my parents, spending allowance money on biographies of Katherine Parr or Jane Grey. (Don't even get me started on my lifelong Tudor love affair and how I loathe, hate and despise Showtime's The Tudors, and Shekhar Kapur for having turned my beloved Elizabeth into a foolish, romance-driven, ineffectual woman and belittling her rightful position as the only truly great Tudor...) I still remember when someone asked me in third grade who my favorite band was and I replied, without hesitation, the London Symphony Orchestra. It was 1969 and the anticipated answer was The Beatles. 

Well into my late teens and early twenties, concert-going meant seeing Pinky Zuckerman and Itzhak Perlman (playing together and telling jokes), Vladimir Horowitz or just going to hear chamber music and falling in love with Bach (J. S. not the other ones), Vivaldi and Scarlatti. My grandfather, before his big stints designing stuff for companies like IBM or working for NASA, or even just repairing everybody's TV in his free time for kicks, worked in the recording industry for a while back when Miami Beach was synonymous with the Rat Pack. I was schooled in all the great classical musicians of the 40's, 50's 60's and 70's, RCA Victor, Deustche Grammophon and why live recordings of Glenn Gould were better than studio ones (he hummed!). I could debate about whether the Bolshoi was better than the Kirov and why both made the American Ballet Theater look like a bunch of hacks in toe shoes. My first truly serious boyfriend/fiancé/man, were we wrong for each other but man, did we both love all kinds of music, was an opera lighting designer and he loved the fact that I didn't think opera was a drag and actually liked German and French operas, not just Italian operas but thought opera sung in English was just... well... awkward. (Exception: Carlisle Floyd's Of Mice and Men) 

Anyway, my husband, who truly loves me, survived many a season subscription to opera, to concerts, etc. I may love Kate Bush and Florence + Machine and the Beatles, but he knows I love my classical music. I was raised on it and a very large portion of it has been provided by impresario Judy Drucker, whose Concert Association of Miami is presently reinventing itself with great performers as Judy Drucker Presents... (much history here of her ousting and the subsequent failure, without her, of the Concert Association- she hobnobs with the best classical performers in the world and really they had no interest in coming if Judy wasn't there anymore). I was so happy to think she'd taken back the reins and was bringing top-flight classical concerts back to Miami. When I first heard it mentioned on Classical South Florida, the excitement, my excitement, was palpable.

I really, really wanted to believe that I could go back to being a season ticket holder for something related to classical music in Miami and that it would be better than buying cold and sterile CDs/iTunes albums, and that I could recapture the thrill of more than a decade past, when going to concerts was something to dress up for and look forward to. 

I like supporting the arts. I love and believe in the arts. 

But I no longer believe in the unbelievable hassle of going to performances here in Miami-Dade County. From flamenco (that recent Paco de Lucia concert at the Fillmore still leaves a bitter taste in my mouth) to Evgeny Kissin, attending concerts has become so unpleasant, so downright impossible, that I do not even begin to see the point of spending money on a ticket.

I am writing this while I had anticipated attending a Evgeny Kissin concert on Sunday afternoon at the New World Center on South Beach.

My husband and I dressed up.

We left with plenty of time.

We got to the venue parking lot, after fording our way through a dense stream of traffic, only to find it was full (with a rude parking attendant, no less), while the Miami Beach Convention Center parking lot, across the street and behind the ill-fated Fillmore Theater, was locked and empty. We drove around. We drove around some more. You should note that about 90% of all street parking in this area of Miami Beach is for residents only, by permit. 

At 2:55 pm, five minutes before the Evgeny Kissin concert was to start, we gave up. $96 of matineé tickets down the drain.

I'm done with preformances in Miami. 

I'm back to thinking about seeing theater, ballet and classical, on occasion in NYC, where I can visit with beloved friends. Where I can do so retaining my SANITY.

I was already jarred last fall by the production of The House of Bernarda Alba (Frederico Lorca) in which the old lady sat next to her friend translating the entire dialog throughout the performance, even after vocal complaints. And then there have been all the other concerts with the hassle of getting to the Arsht Center (guess what, have a whole bunch of events there at once, and you know, there might be some traffic and parking problems...) or the inability to tolerate the atmosphere, like with Paco de Lucia concert and all the milling around, the latecomers (an hour?), the beverage deliveries.

So Judy, I'm very sorry. I really wanted to support your comeback as the rightful queen of South Florida classical music. But Miami is no longer a place where anyone who truly enjoys the arts can attend the arts. Going to a concert shouldn't have to be so hard. But it is! Either you can't hear it, or your view is obstructed by beverage delivery, or you simply can't even park to get in on time, before the concert starts. 

It's pointless. It's a waste of money. It makes potential patrons of the Arts angry.

Attending concerts can be truly uplifting.

All too often in Miami, all you're left with is feeling robbed.

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© Bright Nepenthe, 2012