Revisiting “10,000 Views”

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TO-DATE STATS: Big deal at the moment

I remember the arrival of the 10,000th view of my blog. It got me so excited that I updated the blog with a post about the 10,000th read.  Now that I have published a total of 88 posts as of today,  I realize I was blissfully amateurish then, especially after someone recently asked me if the blog was getting 1000 views a day!  But I had a great time being an honest newbie blogger.

There’s beauty in honesty.  I remember when our high school newspaper adviser selected me, a mere columnist/reporter,  to be an alternate delegate in the event one of our school’s seven editors could not join the delegation that would sail to a national secondary schools press conference in the southern Philippines.  The prospect of being on a boat bigger than a canoe for three days on the Philippine Sea –  something I had never experienced – excited me endlessly.

As instructed I packed for the trip.  It was pretty cruel, really, to order me to pack to go nowhere unless one editor became ill.  I wanted to go so bad I could taste it but I did not want anybody to get sick.  Why did my 16-year-old life have to be so complicated?  So on the delegation’s departure day, there I sat in the house, waiting for word on my fate as a future awesome journalist.

Oh dear.  As fate would have it, the flu bug sickened the society editor.  Consequently I was notified of my life’s purpose that week! My parents rushed me in a public jeepney to the port to board the boat at the last minute.  My school’s healthy editors’ dim view of my sudden appearance on the scene was palpable.

I was like a Beverly Hillbilly on the boat.  After all, I had never been on one, never been in any other island on the map, never been a delegate – a total hick from the sticks.  My mouth was probably agape all the time in silent wonderment.  Everything amazed me – the aging boat, the measly food, the cots for us to sleep on, the help, the diversity of passengers, the balmy sea breeze, and myself.  I was in total disbelief of my presence there!

At the conference, competitions were held among us budding writers from high schools all over the Philippines.  Our adviser entered me in a feature writing event.  I wrote with unabashed honesty about my awe of the three-day boat journey.  Perhaps the judges found unsophistication, naivete, and honesty so refreshing that they awarded me a bronze medal.  Hey, that was third prize – after gold and silver!  Correct spelling and grammar probably did not hurt either.

Okay, where was I on the blog stats?  I honestly got sidetracked.

According to the blog site statistics that readers don’t see, five (5) posts stand out as the most viewed out of 88 posts over 40 months.  Who knows who the readers are, but it would be safe to say they are mostly cancer patients and caregivers looking for answers.  The rest are lurkers and cancer drug investors.  The response exceeded my expectation. I had only decided to blog to inform family and friends about my ongoing fight against the malignant tumor at the bottom of my left lung and the unknown tiny spots too many to count scattered throughout both lungs.  By so doing, I could avoid repeating my answer to the persistent question: How are you doing?

The statistics tell a story.  I have my own take, too, on why the 5 blog posts attract the most all time viewers.  Like all the other posts that did not make the top 5, they are written in humor. They can be found in the archives.

Following are the top 5 and why:

No. 5 About Celpeggy

Readers want to know who is this blogger? What does she know? What makes her tick?  How can she write in such a style?  What’s her problem?

No. 4  Cancer Diagnosis is not a Death Sentence

Don’t we all look for hope and reassurance that we are facing a situation that is not insurmountable!

No. 3  My CO-1686 Stoke that Appetite!

Loss of appetite is universal.  Based on experience, this medical marijuana account is very honest and extreme honesty can bring about hilarity.  A caregiver, a Hollywood comedy writer, told me after reading it, You are a very funny girl.   You’d think she saw me in a string bikini.

No. 2  Tarceva Resistance – When It’s Time to Move On

Sooner or later, cancer cells outsmart the drug that’s targeting them.  Newly diagnosed patients and their caregivers want to keep one step ahead.  We’ll revisit this topic.  It could have been done better.

No. 1  CO-1686 First Scan CO-1686 Vs Diva’s Lung Cancer

This is a one off.  June 4, 2014.  One investor in the CO-1686 drug was following my blog.  When my first CTscan after six weeks of Poksceva (my tongue-in-cheek brand for Rociletinib) showed great promise as the drug for the T790M mutation of EGFR, he twitted and his tweet went viral in the investment community, sending my stats completely out of the chart.  Unfortunately, the CO-1686 trial was eventually discontinued.  I don’t know if the investors lost money, but that’s not my problem.

Thank you for your support and patronage.  We are meant for each other.  Which topic would you like to revisit?

 

 

 

 

 

 

 

 

 

 

 

An Appointment With the Gastroenterologist

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The Digestive System – One of the Great Equalizers in the Human Race
Between my Oncologist (Onc) and my Primary Care Physician (PCP), I have had more appointments with specialist doctors than I can remember. It’s probably a good thing because I’ve learned a lot.  Now I can decide which branch of medicine I’d major in when I grow up.  At the same time, going to and from these doctors and writing about them give me something to do, write about, and share with those who give a hoot.

The latest medical specialist who examined me was a gastroenterologist (GE), a doctor specialized in the human digestive system, which includes the esophagus, liver, stomach, gallbladder, pancreas, large intestines, small intestines, appendix, rectum, and anus. It makes me wonder, After dealing with those body parts steadily, does the good doctor eat soul food such as chitlins or the Filipino dish called “dinuguan?”

I am not a hypochondriac preoccupied with my and only my own health issues.  My Onc had sent me to GE after the liver MRI specialist already declared there’s nothing wrong with my liver, in agreement with the CTscan radiologist.  But no!  My Onc had a need to  know why a portion of my common bile duct is distended, even after I told him I’ve had that since the CO-1686 clinical trial three years ago and Dr Brevity never got excited about it.  But Onc insisted, so off to GE I shuffled for my appointment.

What can we do for you today? asked the 20-something intake aide.  I thought you’re going to tell me, I replied with a smile.  She flipped through my record.  It’s hard to find something if one does not know what one’s looking for.  I asked her, Are you the Physician’s Assistant (PA)? The PA, like the Nursing Practitioner, is the closest thing to being a doctor.  Oh no, she said.  With nothing else to do, the intake aide asked me my weight and height, told me the PA will see me in a few minutes and then took off.

The wait for PA was more like 45 minutes.  I suspected she was studying my medical records.  PA, a 35ish Chinese beauty, came in seemingly happy.  She had figured out the purpose of my appointment!  It’s your common bile duct, she said. How long have you had that condition? Three years, I answered. She asked, And you’ve had no symptoms? Like, your urine is not cola colored? Your stool is not pale? To all her questions, I answered “no.”  She instructed me to lie down face up on the examination bed. She poked hard at various points on my tummy to elicit a scream or screams.  No screams occurred because nothing hurt me other than her painted fingernails.  Finally exasperated, she said, I think an invasive procedure to find out what’s wrong with your common bile duct should not be done.  It will do more harm than good.  But I’ll ask GE. He has the final say on this matter.  I’ll phone you as soon as I find out his decision.  Great! I exclaimed. I resisted the urge to do a somersault to celebrate.

Do you drink alcohol? She asked as a parting shot.  I answered, Yes, once a week at a dance in the retirement resort.   It sounded like an innocent confession.  Of course I minimized the fact that the dance event features a live band and BYOE or Bring Your Own Everything, which is wide open to interpretation, as in bring your own everything from the cellar.  Thank goodness the dance is only from 6:00pm to 9:00pm.  With the resort’s bus limo service, I make it to my manor upright every time.

The next day, PA phoned and told me GE said there’s no need to do anything with me.  I said, Yes! and pumped my fist in the air.

Let me know what you think about GE or the weekly BYOE dance.

 

 

 

HealthWell Foundation Ran Out of Funds (conclusion)

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Okay, so the Onc’s RN said all I needed to do was drop by their office and sign the document and she’d FAX it right back to Astra Zeneca (AZ), manufacturer of Tagrisso. It sounded so easy. But as it turned out, my “drop by” would be fraught with difficulties, most of them my own doing.  Difficulties are good. They sure make my accomplishment seem more epic.

True to my minimalist lifestyle, I have been without vehicle now for 10 months. I’ve mastered the retirement resort community’s bus system. I took my maiden solo 15-minute trip to Laguna Beach using the Orange County Transportation Authority (OCTA) bus and it worked. I found the way back to my manor on the same day! Buoyed by my initial success, I decided to use OCTA to drop by the Onc’s office, which is in another city. The other option was by taxi. The big difference in the cost of the round trip drop-by: $50 by cab vs $1.50 by 24-hour OCTA bus pass.  I could definitely use the savings to buy me a new string bikini swimsuit.  Priorities, priorities.

I planned the trip.  Actually the OCTA website did the planning complete with maps and instructions.  I packed cut-up apples, cashews, and cheese cubes for snack in case my blood glucose ran low while I was in the middle of nowhere. And of course water. All set with my roommate the backpack carrying the goodies, off we went to the expedition.

It seemed like I was hopelessly lost. I did a lot – and I mean A LOT – of walking to correct my navigation errors.  Finally I made it to the Onc’s office, signed the paper, and headed for the bus to go home. Got lost some more. If I straightened out the path that I had walked, I probably would have reached Canada. But it was so worth the experience and the mission accomplished.  Always in awe of the bright side – that’s me.

The following day, AZ phoned and let me know the application FAXed from my Onc’s office was incomplete. Oh no! Over the phone she and I completed it. The next day, she phoned me again this time for the good news: I am officially in the co-pay assistance program: no need to wait for the IRS document, no need to file my application, no need to call for my refills which AZ – not the specialty pharmacy – will ship directly.  How awesome is that! As I wrote this post, I had exactly 5 Tagrisso pills left. The shipment was supposed to arrive any day.

Saved by the bell!

Please feel free to share your drug co-pay story, if you have any.

 

 

 

 

 

Ever Wondered How it Feels to Wear a String Bikini?

WARNING: A photograph that may be offensive to some people appears at the end of the story.

After years of blogging about cancer, the latest update being My Fifth Cancerversary, I suddenly felt extra-energized. I decided to post weekly again, except this time I’ll include topics  on “LIVING LIFE”, true to my mantra, which is a line from my favorite song.  It goes, “…Before my number’s up, I’m gonna fill my cup, I’m gonna live, live, live until I die…” Yes! I’m talking about a life without hang-ups and apologies, the go-for-it kind of life.

You know you’re alive when long-held thoughts still occupy your head. In my case it is about the string bikini. I decided to transform the thought into action and go for it!

Here’s the back story.

As soon as the original song Itsy Bitsy Teenie Winnie Yellow Polka Dot Bikini came out in 1960, I rushed to a seamstress and ordered a bikini swimsuit custom-made for me based on my own design. I was a sophomore civil engineering student then – a young starry-eyed chick pioneering in the male-dominated profession, hell-bent to break with the status quo.

My first bikini swimsuit was more like a two-piece bathing suit, the bottom piece similar to today’s hipster.  It was very tame, but at that time it belonged in the bold category.  I remember wearing it, strutting my 34″-22″-34″ figure, and sashaying to the YMCA swimming pool when the guard shouted at me, Miss, we only allow one-piece bathing suits here!  My swift response surprised even me. I asked, Which piece do you want me to leave on?  Laughter exploded.

I bought a succession of many swimsuits over the years, most of them bikinis. The top seam of the bottom piece kept going father down from the bellybutton but never got as low as that of the string bikini. I kept wondering how I would feel in a string bikini.  It’s strange what sense of security one-inch wide fabric had given me.

Fast forward to the present.

One day, a youngish Anglo man who goes to the same resort swimming pool that I wade in frequently, happily told me: I bought a couple of bikini swimsuits for you to take home and try on.

What? Who is this dude? I knew he had been eyeballing me.  In greater Los Angeles area, because of Hollywood, talent scouts abound, some of them up to no good.  But this man was not the talent scout who, in my fantasy, would propel me to stardom.  In addition to his professional achievements that make his resume glow, he is a loving dad who can buy at wholesale cost several bikini swimsuits at a time for his 18-year-old daughter.  By his estimate, she and I wear the same size.

The man’s generous offer, which I took as a compliment, sent me.  My loss for words made me confess to him:  I don’t know what to say!  He suggested a solution to my problem:  Say THANK YOU.  Oh yeah!  What was I thinking?  THANK YOU, I said and followed it with a flattening blast of a laugh.

I tried the two black string bikinis at home, one at a time.  It works better that way.  One style was labeled “cheeky,” which is self-explanatory.  I settled for the non-cheeky style.  Thus my first string bikini swimsuit and I connected.  Thanks to an opportunity that fell on my lap.

Conclusion!

During that dry-run moment,  I so  belonged in the black string bikini. I felt awesome, comfortable and liberated.  I was even motivated to vacuum the carpet while prancing on tiptoes.

How I’d feel in a string bikini is no longer a mystery.  It is so here and now.

Let me know what you think.

 

 

One-Man-Band Onc

Is this real? Pinch me, please!

I was hoping that would be the dramatic opening salvo of this post.  But noooo! The CTscan and blood tests have not yet happened at this point.

The confusion on the day of the Onc appointment started when I received a phone call from my insurance company.  Since my smartphone is always on “mute” I never heard the call.  I had to listen to a recorded  message.  A woman’s voice said she is from my insurance company and is happy to share a news about the approval of the authorization of a requested procedure.  I was perturbed.  I was unaware of any request for a procedure, a word that sends me shaking in my toe socks.  I have always associated the word procedure with surgery, chemo, or radiation.  I returned the call.  After a few minutes of saying yes or no to a computer voice, I gave up.

So to the one-man-band Onc’s office I shuffled for my appointment.  I thought the good doctor was going to direct me to a laboratory for blood draw then to a radiologist for CT scan.  But nooooo!  A young male technician checked my blood pressure, weight, temperature, and oxygen.  Everything was good, including oxygen which was 99!  He then directed me to sit at a certain chair and wait for the Onc, who joined me shortly.

The Onc, a middle-aged Anglo male, had been born with a smile permanently plastered on his face.  His closed mouth forms a line of thin lips like the “smile” emoticon.  When he asked me, How are you doing? I caught myself smiling at the smiling face.  Then he asked if there was any change in my health.  I answered, Nothing has changed.  I still have lung cancer. And of course, the questions Any shortness of breath, coughs, fatigue, and other symptoms followed. I said the only changes I notice are my bushier eyebrows and slightly longer eyelashes. Those are good ones for you, he said. I smiled and froze my face in smile mode to  match his for the duration. He added, It seems like Tagrisso is working for you.  I would hope so, I responded.  He countered, the CT scan will tell us the whole story.  I said, I thought that’s what we’re going to do today.  What happened?  He said, I’m going to write the request for blood tests and CTscan today.  The consultation ended with the stethoscope motions to listen to my heart and lungs, sounds of which, he said, were good.  He dug his fingers on the area around my throat, obviously looking for swollen lymph nodes, which he did not find.  I must mention Dr Smiley’s warm hands that brought back memories of my favorite gynecologists of yesteryears.  Dr Smiley pressed hard on my belly, perhaps expecting me to scream if there was pain. There was none.

What was that consultation about? It sure seemed unnecessary to me.  I wondered, What if I had gone in there with a hacking cough, complaining about pain, shortness of breath, etc.  Would he have not ordered blood tests and CTscan anymore? Would he have simply recommended hospice? Or maybe it was important for him to see me in person to make sure I was still breathing.  After all, it had been three months since our last consultation.  But couldn’t a phone call have taken care of it?

The following day, I visited the Patient’s Portal and read Dr Smiley’s entry about the consultation, as follows:

Female, NEVER SMOKER, lung cancer, Stage IV, EGFR 19 mutation, T790M mutation. She was originally diagnosed in 2012 with her only biopsy.  The report shows adenocarcinoma with the EGFR exon mutation and T790M mutation also. She received Tarceva daily at various doses between 2012 and October 2014 with change over to clinical trial “Clovis Study” with eventual progression of disease in January 2017. She started on Tagrisso 80mg daily on 1/18/2017. She is doing well and asymptomatic without any physical exam findings of concern.  I will check labs at this juncture and repeat CTscan imaging with an attempt for comparison to January 2017 CT scans.  If stable, I will see her back in 3 to 4 months.

The paragraph left much to be desired.  The Onc’s description of the female could have been more picturesque.   The words “gorgeous” and “bubbly” could have helped him to humanize the cancer patient.

As I was writing this post, a radiology office left a message in my smartphone.  A male voice said that Dr Smiley had ordered a CT scan and the radiology office would like to schedule the appointment.  It became clear: It was the approved authorized procedure about which the insurance company had called me earlier!

The blood tests and CT scan have now been clearly scheduled.  Anticipating the results starts all over again.

 

 

 

First Three Months on Tagrisso

Happening soon! I am talking about the upcoming CT Scan and blood tests this month after my first 90 days of taking 80 mg of Tagrisso once daily.  I had been popping the pills religiously at 6:00 every night except for one evening when I completely forgot all about it.  What happened was, three Foodies picked me up at 4:30p.m. for a 5:00p.m. seafood dinner at Bonefish Grill. Six o’clock simply got lost in the hoopla.  It happens when a mug filled with an awesome designer draft beer and a heaping plate of bang-bang shrimp are strategically placed in front of my eyeballs.  It was not until midnight that the missed Tagrisso dawned on me.  I decided then and there that the occasion had risen to switch Tagrisso-taking time to the crack of dawn, as in 6:00a.m. and get it out of the way for the day.  It does work much better.

Tagrisso continues to give me zero nasty side effects:  no upset stomach, no shortness of breath, no fatigue, no diarrhea, no constipation, no rashes, no dry skin, no pain, no swelling of anything. Nothing.  I get additional bronzing and Vitamin D directly from the California morning sun without adversarial effect.  I keep a vigil on my eyebrows to catch any signs of bushiness. I scrutinize my eyelashes daily for indications of becoming mutants. As a matter of fact, I have noticed changes.  My eyebrows have developed a new growth pattern.  The outer ends curve upwards like handlebars.  And the hairs are coming out long and white or gray.  I have become the female Mr Clean! I’ve trimmed them and plucked the wayward hairs once already.  I don’t blame Tagrisso for the graying.  After all I am waaay past the age of innocence.  My lashes that Tarceva left stubby have been growing back darker and longer, making the eyes more soulful and fraught with the come-hither look.  This development is getting me all stoked!

I’m truly curious what the upcoming CT scans will reveal.  Is the adrenal occupier still on its perch? Then there’s the Flying Saucer at the bottom of my left lung – the portion of the tumor that Tarceva did not wipe out but Rociletinib kept at bay for nearly three years.  Did it grow bigger, get smaller, or stay the same? What happened to the Milky Way in both lungs? Are the mysterious tiny nodules still too many to count? What are they, anyway? This is exciting!

This upcoming CT Scan would be my first outside the university environment. Since my cancer diagnosis in 2012, all my cancer treatments, tests, and scans had been in a succession of four teaching hospitals: University of New Mexico, University of Colorado, University of California in Santa Monica, and University of California in Irvine.  Now I am with a one-man-band Onc in Southern Orange County.  Ta ta to stardom or diva-hood in a one-man-band atmosphere.

Since dropping Rociletinib, the CO-1686 drug, and starting Tagrisso, I have not set set foot in ol’ Club Med (UCI Orange).   Life is more enjoyable when it is not designed around three-week blocks of time.  Life is so much simpler without drug-induced diabetes and without Metformin. Life is a beach indeed.

My son, his wife, and their ten-year-old son – an only child – the one who they thought would get past statutory age still unclear on the concept of rhyming, visited me for five days in my manor in the retirement resort living at its best.  I delighted in the opportunity to host them.  However, having given up the vehicle to be true to my new minimalist lifestyle, I became the tourist!  In their rented car, they hauled me around town.  We hiked a steep trail that took an hour and a half round trip.  We gloated over our accomplishment of making it to the top where we could see the grandeur and beauty of the Pacific Ocean.  My chest swelled with pride in going to toe to toe – albeit a tad slower – with the young ones during the ascent. But the descent was another story.  My son had to hold my hands.  Otherwise, my bod rolling down uncontrollably to the bottom of the canyon like a  fallen log was a distinct possibility.

I miss Dr Brevity and his staff.  Obviously the feeling is mutual.  Out of the blue his RN took time from her extremely busy schedule, phoned me and asked how things are going. The trial coordinator sent me a social media message saying “I am missing you that’s all.” I like to think those sweet thoughts could pulsate vibes to the CT scan machine to take wonderful images during my scan.  Wishful thinking is good.

Swollen Feet and Ankles

Nowadays, each time I notice any little unwelcome change in my body, my finger is ready to point to cancer and anything related to it as the culprit.  One day last January, I noticed my feet and ankles were swollen, a mysterious condition that I had never experienced before. Having survived many mysterious ailments decades after surviving statutory age, I put swollen feet and ankles in the blame game department. Right off the bat,  I wanted to declare the swelling as a side effect of the Tagrisso pills but I couldn’t.  They hadn’t been shipped to me yet at that time!

As usual, I did my sleuthing. How did that happen? How could I suddenly have swollen feet and ankles? I thought only pregnant women got them. Or women from third-world countries that still have the disease called beriberi. Even when I was pregnant I never had swollen feet and ankles, but my breasts became swollen with milk for the infant right after childbirth. Those I liked because they made me look voluptuous overnight.

I consulted my RN friend in Albuquerque.  Over the phone she gave me a mini-course on swollen feet and ankles based on her education and experience. After the session, you’d think I would have been satisfied and put the issue to rest.  Oh no, not me. I’m an engineer.  I have the need to know.  Why do feet and ankles swell?  To find out, I returned to Google University (GU) and audited the course Swollen Ankles 101.

I searched GU only for what applied to my case. After all it’s all about me, which takes me back to the mother of all disclosures: I am not giving medical advice here. Remember I am a retired civil engineer who at the peak of relevance was only concerned about sewage flowing downhill. And it usually did, and still does, unless someone pumped it out of a place where it is not moving and hauled it somewhere where it can do its thing – flow downhill.

  1. Consumption of too much sodium causes feet and ankles to swell. After reading that statement, the light bulb over my head went like the flashing light on a police car. It made sense! My episode of swollen feet and ankles had immediately followed my bacterial lung infection event. During the coughing disturbance, I needed lots of liquids – water, tea, beer, soups – to help get rid of the mucus from my body.  I toyed with the notion of concocting from scratch the hearty chicken soup that everybody and his brother swear as sure cure for cough and cold but I couldn’t. There was not one dead chicken in the freezer.  The bed also beckoned me to loll. I resorted to canned soups, which had never been part of my eating regimen. For some reason, the canned soups tasted yummy those days, especially Trader Joe’s clam chowder. Its label on the can said, three (3) servings per can. No way, I argued with the label, One serving per can! And I ate the soup to my heart’s content over and over. During the sleuthing process, I re-read the label on the can.  It says one serving contains 800 milligrams (mg) of sodium.  Did the math: 3 servings in one sitting equal 2400 mg of salt. According to the Dietary Guidelines, persons 55 and older should not consume over 1500 mg of sodium per day. Conclusion: I ate waaaaay too much salt over a period of 21 days. No wonder my feet morphed into fat burritos.
  2. To treat swollen feet and ankles, elevation is the key.  Site after site in GU assured me that swollen ankles and feet are common and usually not cause for concern, unless accompanied by pain in other parts of the body or other symptoms that could signal a serious health issue.  No other malady symptoms accompanied my swollen feet and ankles.  After reading the encouraging paragraph, I wanted to do cartwheels to celebrate but I couldn’t.  My feet and ankles weighed like lead.  The theory behind the swelling of feet and ankles is simple and makes sense. Sodium is an element that plays a key role in regulating water in the cells of the human body, among other functions. Excess sodium makes the body hold extra fluids in the cells. Like the sewage in the sewer pipe, the water in the cells flows downhill. Gravity takes the excess water to the feet and ankles. There I had it!  To get rid of the swelling, I needed the help of gravity to return the water back to circulation. But how much more downhill can it be if downhill starts from the head then down to toes?  Solution: elevation!  I got a pillow and put it on top of the dining table. I sat on my favorite chair and propped my feet on the ingenious engineering contraption. My feet were higher than my waist.  I elevated my feet and ankles for 20 minutes every hour that day.  Okay. I must confess. My consultant and GU did plant the elevation idea in my head but I worked out the specs and details of the contraption. Bottom line: Elimination of sodium and elevation of the feet resolved the swelling issue after a few days.

Although I’ve been careful with my sodium intake and generally staying in my good behavior, my ankles still swell occasionally. Minor swelling. It’s a good thing I’m not into ankle bracelets. What I do when the swelling happens is I review the day’s immediate past activities and try to figure out what triggered it. I find that too much walking or prolonged sitting or standing causes it. Who knows! But surely, one thing happens when I elevate those feet up a few times for 20 minutes each time: The fluids mosey on back to circulation and allow the ankles to look sexy again…to a certain segment of the population. So I read.