Insurance Company Denies Payment

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Not a Pretty Picture!

 

My life is filled with conflict.  Fortunately, I dig conflict.  Being a self-proclaimed Drama Queen, I thrive on conflict.  Conflict becomes me.  Okay, you get the drift.

When it became almost clear that rociletinib, the CO-1686 trial drug aka poksceva, had started to differ with me as to its purpose in my well-being, my awesome Onc, Dr Brevity, decided to requisition the services of Guardant.  Guardant is the noted high-tech company that analyzes human blood to determine the types of mutated cells that are coursing through the veins of a cancer patient.  Dr Brevity said he wanted to know what happened to the cancer cell that was once identified as T795, a mutation developed out of my EGFR in exon 19 deletion to resist Tarceva.  Cancer cells do learn to outsmart cancer drugs!

I asked for the results of Guardant’s lab analysis as soon as it became available.  Like the Good Doctor, I wanted to know what new nasties were parading in my system.

I read the report with great interest.  The only problem was, I did not understand a thing about analysis of DNA, genes, and molecular pathology.  Well, what do I know about molecular pathology? I’m a civil engineer; I’m into sewers.  But I got the hang of what the report was saying: Those analysts did not know what to make of the results either because there was not enough material in my blood, consequently, they did not know what treatment to recommend.  So, now, a whole slew of us including Dr Brevity, the analysts, the CO-1686 trial sponsor, its employees and associates, and me, know more than what we did before Guardant came into my existence.  Zip, zero, nada.  And my insurance company put me and only me on notice that they will not pay for the lab’s analytical services.  In other words, you, Ms Senior String-Bikini Babe, shall pay.  The scenario reeks with conflict of interest!  The insurance company’s interest in my funds conflicts with my interest in not paying for anything whenever possible.

Well, I happen to be a veteran of conflicts.  In public events, when the emcee asks veterans in the audience to stand up and be recognized for their patriotic service to the country, I attempt to join those who rise, but a companion always pulls me down and puts me in my place.

I read the letter of the insurance company word for word and found I have 60 days to file an appeal.  I can name a relative, friend, attorney, doctor, or someone else to act as my representative.  The most logical representative is Dr Brevity because he was the reason for the payment denial, which, by the way, was given:  Medical records requested were not received.  In order to determine financial liability or medical necessity medical records are required to assist in a clinical determination. As these records have not been received, this claim is not payable by the insurance company.

It was my turn to put somebody else on notice.  And I did.  Voila!

(to be continued) 

I’d be glad to hear your experience if you have any on insurance payment denial of Guardant’s services.

 

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.

A Postcard From the Pits

The news about Feisty Heifer – that would be me – was grossly exaggerated: that she was last seen blog post in hand, riding a broom that was careening to the Pearly Gates. Truth of the matter was, the last of my mystery ailments 2016 series just had to get in on the action. Some unknown nasty bacteria decided to occupy my lungs on my way back from NM to CA after Christmas. It sure stopped cold my first foray as a cougar. This cub and I had planned on crashing a full-regalia New Year’s Eve Party in our retirement resort. It happens when a couple thinks the whole world waits for them to buy tickets the day before the event. What was he thinking!

My poor lungs! The Milky Way has occupied them for nearly five years now. In December 2015, after the Tokyo/Shanghai trip a bacterial infection battered the lungs some more. This past December, a new host of inflammatory characters pummeled them yet again.  And that in spite of  pneumonia and flu shots in November.

For another first time in my life, I faced sickness alone, which had never occurred to me as a distinct possibility.  There had always been somebody hovering around me, asking how do you feel? Can I get you something? Or ordering me around to Go to Urgent Care, Go to ER, Take Ibuprofen!

I faced seven days of antibiotics, which generally makes me feel crappy.  I got to thinking, Who will help me? Who will nag me? The answer was unequivocal: me, moi, and no other. My present lifestyle is a choice of mine and the consequence is that I have a monopoly on the caregiving action.

When this last bacterial infection made me feel really, really bad on the second day, a burst of creativity in the caregiving department washed over me. I thought I’ve got a serious ailment here – inflamed lungs filled with crud that caused hissy-fit coughing,  sounding like a bongo drum. I considered having my cabbie cohort  to drive me to the ER and get me some tender loving care from the young handsome ER doctors of Southern Orange County. But coughing alone, no matter how bad, is not ER material. It has to be accompanied by other life-threatening symptoms like nausea, excruciating pain, shortness of breath, chest tightening, high fever.  I had none of those.  In fact, my appetite seemed to have perked up. What’s the matter with me! So out with creativity. The only thing I could do was wait out the antibiotic to do its job.

But I have to hand it to my poor lungs. You’d think that considering myriads of obstacles thrown on them by the Milky Way, plus bacteria-caused inflammations that block the airways two years in a row, there would be shortness of breath qualifying me for a trip to the ER.  Maybe my lungs have more extra airways than the poor ordinary mortals who are deprived of the cancer experience.

Meanwhile, a new experience awaits. Today it’s official. The progression under CO-1686 is for real, in accordance with the RECIST standards for solid tumors.  I was on the ill-fated Magic Pill just three months short of three years.  Goodbye Poksceva. Goodbye diabetes. Goodbye Metformin.  Goodbye suspense. Goodbye My CO-1686 blog.  HELLO TAGRISSO!

The mucus machine has whirred down. I think I’ll crawl out from under the biggest rock in the pits.  I’ll blow the dust off me and do a little happy dance.

 

 

 

 

 

 

 

 

 

 

 

My CO-1686: Something Old, Something New

Once with cancer, always with cancer.  When a scan report says Stable, all it means is No evidence of progression was found during that imaging session.  If the report says NED,  it’s No Evidence of Disease.  In both cases the nasties are there, surreptitiously floating around.  Those statements or some words to that effect were drilled into my head at the very beginning of my cancer journey.  The message: Be clear on that concept.  I got it.

Last month’s events would have freaked out worry-warts but not the self-proclaimed veteran of several medical battles.  However, the events gave me pause but only to allow my mind to explore positive steps to take if or when ugly news about the menacing tumor at the bottom of my left lung confronted me. After that, I moved on to matters over which I have control like trip planning, fine dining, and toenail clipping.

But first, my new primary care physician  (PCP), a gerontologist, a doctor specialized in medical issues of people waaaay past puberty, just had to double down the harrowing events.  He ordered me to get a mammogram! I protested tremendously.  I had already given up the mammogram thing three decades ago after the first one, plus in the CO-1686 clinical trial, I have been having thoracic and abdomen CTscans every nine weeks.  From my studies of the human anatomy at Google University (GU), I know the thoracic area definitely includes the breasts.

Dr PCP wouldn’t take no for an answer, adamant that a different imaging technology is used for the breasts.  I also did not want to push my luck and get thrown out of his patients list. At our initial doctor/patient fact-finding interview, after I had given him all the information about my ailments and those of my blood relatives dead and alive, my past and present medications and surgeries, he asked, Is there anything else about you that I should know?  I asked back, my inscrutable beady eyes a-glint with mischief, You really want to know? Yes, he responded with conviction. Okay, I said, if you really must know: I question doctors. His face cracked an enigmatic smile.

So off to my second mammogram screening in three decades I shuffled. At the breast clinic, I noticed that the mammogram motions had not changed in 30 years. As the female technician pulled the first breast and shoved it under the automatic-garage-door-like contraption, I wondered if in these days of unisex permissiveness, male mammogram technicians abound.  I did not ask the bubbly millennial who seemed to thoroughly enjoy her work. Soon the pulling and shoving were over.

One week later, the breast clinic summoned me with urgency to return for a mammogram diagnostic because the radiologist had seen psomething unusual about my right breast. I thought, That’s it. The lung cancer has not only risen from the dead, it has metastasized to the breast. I’ve become a two-cancer senior babe. When it rains it pours!

So, back to the clinic I surrendered the C-cups one more time. Ms Bubbles focused entirely on the right one. She said hopefully she would not have to do an ultrasound.  She pulled and shoved, took x-ray images and eyeballed them. Uh-oh, we do need an ultrasound, she declared, and led me to the ultrasound room.

I have always associated ultrasound with the determination of the gender of a fetus in mama’s womb. Are you looking for a baby? I asked, as she slid the mouse over every square centimeter of the breast.  She answered, If I find a baby up here, we’re in big trouble. And we laughed. In a minute, the job was done. I’ll show the result to the radiologist, she said and rushed out the door. In a moment, she returned, the female radiologist ahead of her.

You’re good! the radiologist beamed. See you next year. And the two left me unceremoniously.  Just as well because I found myself suddenly speechless.

Learn something new everyday is my mantra. Here’s what I learned from the mammogram experience. Women’s breasts are not only calipered, as in 34A or 44D, they are also density defined: normal, heterogeniously dense, and extremely dense. In some states, including CA, the law requires doctors to notify women with dense breasts. The intent is to make them more vigilant, which makes sense because a dense breast is like a rainforest. Cancer is difficult to see and requires extra technological maneuverings.

Two days later, I had the CTscan that would determine the fate  of the flying saucer at the bottom of my left lung. Five days later, I did the blood tests and Dr Brevity and I met to discuss the outcomes.

Dr Brevity is a straight shooter.  He said the flying saucer measurements increased a very tiny bit and still not considered progression by RECIST (Response Evaluation Criteria in Solid Tumors) rules. But there is something new in the CTscan report. It talks about a 2.5 cm tumor sitting on top of the right adrenal. Where is the adrenal? I asked. It’s a gland on top of the kidney. His turn to ask: Do you have any pains? How are you feeling in general?  I feel awesome. No pain, no fatigue, no shortness of breath. I have boundless energy, voracious appetite, and many more upbeat stuff I wanted to say but didn’t. I did not think overselling would knock the adrenal occupier off its perch. My turn to ask: What are we going to do about the tumor? His answer: Nothing, because you have no pain. What?! What a weird thing to hear – doing nothing to a nodule in someone with cancer because she suffers no pain.

Since progression has not been established, I continue to stay under the trial umbrella. Dr Brevity gave me a fresh supply of Poksceva for my 47th cycle on CO-1686. To determine what the mysterious adrenal occupier is and if there are other parts in my body that might light up like the night sky of July 4th, he ordered a PETscan and an MRI. He also ordered a liquid biopsy to get ahead of the treatment game if certain mutations are found lurking in the blood.  He also told me to ask Dr PCP to get my insurance company’s authorization for my continued participation at Club Med.  How can I not love back Dr Brev!

Meanwhile, I needed to get answers to my questions about tumors that suddenly pop up atop the adrenal. The GU scholar went to work, in hot pursuit of power through knowledge. If not me, who? If not now, when? I love that argument!

This I learned: Any one of two types of tumor can suddenly grow on top of anybody’s adrenal: (a) cancerous, called cortical carcinoma.  Or (b) benign, called benign (duh!) adenoma.  According to the American Cancer Society, a 5 cm to 6 cm tumor, about 2 to 2.5 inches, is considered cancer. That’s the length of an average jalapeno.  Imagine that object banging against the other organs near the kidney.  It would definitely inflict pain.  That’s why nothing is done to a measly 2.5cm tumor or anything under 4 cm.  It just sits there like a blob. Sometimes it resolves.  My body welcomes a blob as long as it stays measly. However, the possibility exists that the blob can grow as massive as a brick, bear down on my poor right kidney and bully the other organs around, sending me writhing in pain. That’s the time doctors will consider surgery to save the Drama Queen.  Okay. GU never expressed the tumor’s morphing in those terms.  Such description happens only when the blogger, an Investigation Discovery junkie, gets distracted by an occasional sci-fi movie.

Otherwise, everything else in the CTscan and blood reports is copacetic. But the Feisty Heifer’s hackles have sure been raised a bit!

My CO-1686: A Reset and a What?!

I take my responsibility to share information as seriously as I take my responsibility to provide sound whenever silence exists. This post is a shout-out for my durable comrades in the CO-1686 non-trial and a special howdy for my friends and the lurkers who warm my heart.

Beginning in May of this year, my fasting glucose rose gradually again from the normal of below 100. By August, it was 167.  There was even a 193 reading, a disconcerting number to diabetes managers, but  Dr In-and-Out did not seem concerned.  He kept reassuring me, Labs are good, despite written report warnings High! Pre-diabetic!  I wondered what readings would excite the Good Doctor.

Being a Google University (GU) scholar, I tried to lower the blood sugar numbers on my own.  As an engineer, that’s what I do – solve problems.

I took Metformin religiously, even doubled the dosage. Nothing happened.  I eliminated sugar from my diet. No effect. I examined my stress level. Zero. I’m not the stress kind of gal. In short, I failed to yank the numbers down. Then one day, the light bulb over my head flashed. The perfect solution to my blood sugar problem descended upon me! I stopped drawing blood from my pinkie and gave up reading my fasting glucose numbers altogether. What I didn’t know didn’t bother me any more.  What a concept!

At the same time that my glucose numbers were rising, Charley Horse returned to my life. It seemed like every time I moved, a cramp threatened to happen. My toes would lock in awkward positions. Fortunately, I sensed the menace’s arrival.  I stood up, paced the room wherever I was and the would-be cramp went away. When a cramp threatened me in the swimming pool, I quickly dogpaddled to the deck.  I followed religiously my Hydrate, Hydrate, Hydrate mantra but the cramp scares kept on coming. All the hydration motions did was award me more frantic trips to the potty.  The heck with it.  I chalked it up to human aging.

Then came my CO-1686 43rd cycle Onc appointment, which I had not considered when I took a grief break. The appointment date left me without the Pills for five days. In other words, I inadvertently took a drug holiday, which consequently brought dumb luck. I became cramp-threat free and my fasting glucose reading mysteriously returned to normal. Jubilation! My body had done a reset.  Feisty Heifer did a happy dance.

Two days later I had my umpteenth CTscan.  For the first time in my nearly five-year cancer journey, its result was posted on my Patient’s Portal. I had been so used to seeing the same Stable, Stable, Stable that I read the report with great relish.  And then it hit me: The discussion was about mild progression!  What?! Has the beast risen from the scarred tissues? I read and re-read until the report convinced me it was indeed different from all the others of the past. On the bright side, there was no pleural (lung) nor pericardial (heart) effusion and all else – bone, liver, kidney, guts, lymphatic path –  were awesome.

I was expecting that afternoon a call from my twenty-something trial coordinator because she had promised to phone me and we’d make plans to case my new digs for a possible future party leading to a Pacific Ocean beach. Sure enough she phoned but only to tell me Dr Brevity wanted to see me the following week.

I had issues with the CTscan report coming to me directly when I never asked for it. In my five years as cancer patient and having gone through four university hospitals, the radiology report had always gone to the referring oncologist, who in turn reviewed the result with me as we analyzed the  images together. To deal with this upsetting report, I prepared  talking points for a serious presentation aimed at discarding that report.  I’d insist on a favorable report.  Yeppers.  Count me in as the type of candidate who’d receive only eight votes out of thousands and demand a recount.

At the consult, the Trial Coordinator and the RN stood at attention as Dr Brevity assured me the increase in size of my main nodule, the dormant flying saucer at the bottom of my left lung, is very tiny and does not meet the Response Evaluation Criteria in Solid Tumors (RECIST) for progression. He admitted he only wanted to hear my thoughts about what to do with it. Are you done talking? I asked. He said he was done talking.

I stepped up on my soapbox: I have issues with that report.  It must have gone to my Patient’s Portal by mistake.  It was probably intended for a reviewer. And I ranted on and on about how the report left much to be desired.  Everybody was so quiet, you could hear a pin drop.  As it turned out, what had gotten inadvertently into my Patient’s Portal was part of a very incomplete report. All my ardent speech rehearsal in skinny girl jeans and stilleto heels in front of a full-length mirror was for naught!

Dr Brevity stated that if in fact the beast had risen from the dead, he’d want to know the mechanism of the progression, as in, Did it mutate and if it did, what is the cancer mutation now? A biopsy would answer that question.  He followed up with another suggestion.  How about surgically removing that questionable mass of the lung?

Then came my turn to toss my two cents in.  I said, We went through this before. A radiologist, the one who I thought suspected me of having too much fun, had declared my main tumor “progressed.” We disagreed, challenged him, and took our case to the Supreme Court of Radiologists.  The radiologist who ends all radiologists consequently took our side, which obviously was right.  We have been stable since. Why don’t we ask the Grand Poobah again?

The trial coordinator answered swiftly:  You are no longer in a clinical trial.  Aaaah. Decisions had been made without my input.  It happens when awesomeness is all that one’s got.

So everybody momentarily backtracked from the not-so-sure problem.  It was resolved that I’d continue taking Poksceva.  At the next scheduled CTscan, we’ll eyeball dimensional changes, if any, of the one nodule that the Supreme Court of Radiologists had once proclaimed, It went stable a long time ago!

Meanwhile, I’ll mosey on down to my new kicks: the Laughter Yoga Club.  It’s good workout for the lungs of non-laughers and laughers like me who live alone and don’t get their quota. Yes, such an assembly exists and no one tells jokes there either.  Check it out.  Here’s one link: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=11&cad=rja&uact=8&ved=0ahUKEwjSmfePtuLPAhUG5WMKHYaZAbQQFghUMAo&url=http%3A%2F%2Flyinstitute.org%2F&usg=AFQjCNFa_Lx2wN1jz5n5ct03kCDk60ry9A&bvm=bv.135974163,d.cGc

Moving on After the Storm

My Octo’s sudden demise was like another wayward wind in my life.  It blew in and blew out, and once again, I’m in the corner of Healthy and Happy, amazingly standing upright, with not a tress of silver hair out of place. It happens when the serial widow believes she can walk on water from the eye of the storm across to dry land. It’s all in the head!

I’ve had 2 blood tests in the CO-1686 non-trial without Octo.  By the way, both times, Dr Brevity assured me, Labs are good. In Octo’s place as caregiver was my baby sister who is 7 years younger than me, size petite small, colors her shiny page-boy hair squid-ink black, wears junior style fashion, and dances like Emmitt Smith should be tossing her up in the air in Dancing with the Stars.  But I have an edge: I am a retired successful professional engineer. Big deal. She is a retired successful attorney! Ah, I remember, Youth’s inexperience is no match to the cunning of old age.

In the 60’s and 70’s I was a young chick pioneering in the engineering world which was then controlled by men.  As such, I encountered one spirit-crushing setback after another after another. It was in those years that I learned to vacate an adversarial situation quickly, let the past run through cleanly, conserve energy for the next battle, and eventually win the war.  Becoming a widow again 12 years after the first widowhood would require the same modus operandi if I choose to enjoy the stroll on the last mile of my life.  And that’s what I choose.  Sulking is so not me. Thus, the motivation behind this post:  I’ve accumulated so many nuggets of wisdom over a huge slice of a century that it would be a crying shame if I did not share them with those who give a damn. I am also kind of running out of justifications for my narcissism!

A few days after Octo’s death, my sister and three of my best girl friends flew or drove in from Dallas, Las Vegas, and Albuquerque to distract me from the isolation of grieving.  Upon their arrival, I noticed their furtive glances the first time I blasted a flattening laugh.  Is this a grieving widow in need of distraction? They must have wondered.

The ladies discovered that I have reinvented myself as Interior Designer Extraordinaire.  For a complete change of atmosphere, I bought a tiny house.  For the first time in my life, here is a house that is clearly mine, not my husband’s and mine or ours. It’s all mine to play with and in.  It reflects only my taste, which we do have to redefine taste.

In the Great Room, my bffs and I did my yoga poses together and delighted in the sounds of bones creaking.  Let’s go dancing, They offered after scouring the social activities in the newspaper of the over-55 gated community where I reside in Southern Orange County, California.  They did not have to drag me kicking and screaming.

To the dance we went. Thank goodness we have reached the age where the  male-female partnering rule has been bagged.  Amidst traditional dancing couples, we swung and swayed, boogied and chachaed until sweat beads formed on our foreheads. In between numbers we sipped water and ate cookies and raisins.  Yes, raisins in tiny corrugated paper cups. What were the refreshment committee members thinking? Soon, the dance event ended. It was 9:00 pm!  It happens when too many old people populate a retirement place and they need to be in the  snoring mode long before midnight.

The next item on the agenda was to establish a new routine, to find a group of fun people, those who share each other’s interest. The village boasts 200+ clubs and organizations that cater to all possible interests of humans and animals.  Dancers, knitters, bible thumpers, cat lovers, Republicans, horseback riders, photographers, health buffs, grievers, bridge players, ham radio operators.  Name it, the village has it.

The Foodies Club got my attention.  In its welcome material, the club defines a Foodie in a  long, drawn-out manner, which translates to a person who is extremely interested in food.  I attended a meeting to scope the club out. For an hour, while eating gourmet ice cream topped with a concoction chosen from an array, I listened to reports on existing restaurants closing, new restaurants opening, food service businesses for the home-bound, curious, or lazy, or all three, and an announcement about an upcoming Moroccan dinner.  The Foodies seemed a happy lot but they are no match to Cannabis Club members in the giddy department.

Whichever groups I decide to entertain myself with will have to wait.  Before I settle down to a new routine, I’m spending time with family and friends who have been very supportive. I’ll also re-establish old connections that had been disrupted. Then back to Southern Orange County for retirement resort living at its best. So the commercial says.

Bottom line: It’s all in the head. I can be as isolated or as involved as I choose. All I do is get a mindset, then say, Let’s do this!

 

 

 

 

 

 

 

 

 

 

 

 

A Ring-Side View of Hospice

The earliest I heard of the word hospice occurred when my first husband was hospitalized in 2004. He had been diagnosed with end-stage renal failure ten years back. We had known then that one day the kidney disease would rear its ugly head and we’d have to deal with the inevitable – the end of his life. That fateful day came. His condition worsened and his body system started to shut down. The head nurse reluctantly suggested hospice to me.  Equating hospice with death, the very word shocked me to the core.  Well, hospice did not have a chance after all. His deterioration hastened to a point where all the involved specialist physicians voted to give my family the dire option of removing my husband’s life support. Being the wife, I had the unenviable task of releasing his end-of-life directive: Do Not Resuscitate (DNR). The hospital bed literally became his death bed.

That was 12 years ago. Last month I watched my second husband, 82-year-old Octo, leave his body on his death bed after only 7 days in hospice. After 8 years of marriage, I became a serial widow.

Diagnosed with acute myeloid leukemia, Octo’s health spiralled downward rapidly to death in 3 months following 3 treatments that included a clinical trial. He had been needing blood transfusions at least twice a week. Finally, his primary care physician mercifully recommended hospice.

Octo had always refused any talk of mortality stuff like last wills and testament, power of attorney, and end-of-life directive.  After the leukemia diagnosis, I told him, You and I are now in a race for the grave.  He did not appreciate graveyard humor, but his primary care physician forced him to come eyeball to eyeball with death.  You have three months my friend, stated Doctor Diplomacy.  For consolation, the good doctor added, You are not alone.  We all have a beginning, a middle, and an ending.  Octo eventually warmed up to the morbid sense of humor.

Henceforth, Octo and I discussed hospice as if we were talking about the movie for our next background acting project. We both thought hospice was a place, a building. Only at signing time did I realize that our manor would be the venue for the hospice action and I would be the hospice majordomo. Before Octo’s signature ink had dried, it suddenly hit me that the man who had been playing a major role in my life for the last 8 years would in fact be gone for good. Of course there was no guarantee that I would not exit this earth first, but the hospice reality was so there and then. I  choked up all day.

Hospice Day One started with the visit of the hospice nurse, an RN. She took Octo’s baseline of weight, blood pressure, pulse rate, arm circumference, etc. Still mobile, Octo slept a lot in the master bedroom or in the guest room. He had the run of the hospice house.

Day Two. Ms RN gave me, away from Octo’s sight, the inevitable patient needs: diapers, hospice journals, and Comfort Kit consisting of morphine, measuring syringe, Lorezapam drops for anxiety. She taught me when and how to dispense them.  In Octo’s face, she suggested a hospital bed. Bullshit! Declared Octo adamantly.

Day Three was uneventful.  He had a bite of a banana, the only food he wanted, and with water, his only intake for the day.  I did not force him to eat.  First, Octo was a hard-headed old mule.  Second, the purpose of hospice is neither to impede nor speed death but to let nature take its course.  A couple of times we laid in bed, he in a reflective mode and I a listener. I made many mistakes in my life, he said ruefully. I said, You sure did, and I laughed. He cracked a smile, no belly laugher, he.

Day Four. He did not want food, only water. He did not ask any more for his daily pre-hospice medicatons. A couple of times we laid in bed again, he reflecting some more. Long reminiscences.  My thoughts jumped between them and my strategizing of the next sushi dinner.  It happens when one is in the twilight zone, straddling one’s life and another’s imminent death. One needs protein.  He stayed in bed most of the time except when I caught him naked as a jaybird and trying to climb into the bathtub.  His body trembled, visibly too weak. You are going to fall! I screamed, and like football safety Junior Seau, I tackled Octo around the waist from behind. Big mistake! I did not have the required strength. He wiggled his body and sent us both on our butts on the tiled floor.  He tried to stand up.  Hold on to the wall! I screamed.  His trembling hands groped and grabbed the shower curtain and  the curtain rod came down on our heads.  Frustrated, I stood up. He sprawled out. After resting, he very laboriously, a few inches at a time, crawled toward the hall.

I decided it was the perfect opportunity to find out if the hospice’s touted 24-hour phone service really worked. It did, but Octo heard me talking. He yelled, Don’t call anybody! I don’t want those emergency people here! I replied, I called the hospice, our 911. You need help to get back on your bed. You need a hospital bed. Bullshit, he said. I’ll crawl to the bed. I answered, But you are facing the wrong direction! I gave him a pillow and he slept on the floor under the door jamb, half his body on the living room and the other half on the guest room.  I phoned a retired RN friend. She suggested I tell the hospice everything, or I could be blamed. That sure sent me shaking on my bare feet.  A pair of the hospice’s emergency personnel came and collected Octo from the floor and relocated him to the bed. The RN did his vitals and made Octo promise to not escape from the bed.

Day Five. Hospice delivered a hospital bed and a side table. Two burly men came and transferred Octo from the guest bed to the hospital bed.  To my surprise, Octo thanked them, then went to sleep. After the hospice people were gone, he opened his eyes, and insisted, Get me out of this hospital bed! I replied, Help yourself.  I knew he couldn’t.  A hospice health aide gave him a sponge bath and a clean shirt, changed his wet diapers, and cleaned his mouth using toothettes. To the aide’s amusement and mine, Octo motioned to receive a repeat of the mouth washing. He returned to deep sleep afterward.

Day Six. Having no food for four days, no water for two days, and no blood transfusion for a week, Octo was nearly comatose. He breathed laboriously through an open mouth. He fidgeted and grimaced. The hospice RN told me as she changed his diapers, Those are signs of anxiety or pain and time has come for anxiety drops, then eventually, morphine.

Day Seven. The hospice RN gave Octo a sponge bath, changed his shirt and diaper. He slept throughout the process.  That night, his breathing was so heavy and loud it could be heard from the other room.  Then suddenly, around 2:00 a.m., an eerie silence blanketed the house.  I called hospice. The RN came, declared Octo dead, and made one phone call after another.  The mortuary people arrived, followed by huge uniformed law enforcement men, presumably to ensure no foul play was involved. Presumptions like that happen when the hospice majordomo is an Investigation Discovery True Crime junkie. Finally the RN showed me how to properly dispose of all the leftover drugs.

Soon, hospice people were gone.  My first husband’s brother and his wife both of whom had uncannily arrived five hours earlier to give me loving moral support marched to their bedroom. In my bedroom, after laying myself down to sleep, I let out a huge sigh of relief that might have reverberated up to the next zip code. The sigh released my body’s tension, relaxing every fiber of my being.  It was Liberation Day for Octo and me! He gained freedom from the agony of pain. I became free to flee from the twilight zone, armed with new knowledge and an appreciation for life as well as for death.

I’m back focused on life. I still have some living to do.  Like my favorite song says, “I’m gonna live, live, live until I die. …..Before my number’s up, I’m gonna fill my cup..”…Then I’ll have another hospice experience, but that’s for another storyteller, another day.