Then HealthWell Foundation Ran Out of Funds for my Tagrisso Co-Pay

I never thought cancer drug crisis would be knocking on my door. In my five-year journey, everything had been rosy. I received charitable foundation funding for Tarceva straight away, got admitted in a clinical trial on first attempt, and was offered another foundation funding for Tagrisso without any effort on my part. Awesome things just kept falling on my lap.

Then crisis struck. I had just completed my fourth month on Tagrisso and called the pharmacy for the fifth month refill when the boom fell. We have a problem, said the specialty pharmacy employee (SP) over the phone. She continued, The HealthWell Foundation ran out of money to help you with your co-pay.

What? I recently recently donated to the HealthWell fund-raising campaign. Obviously the campaign did not raise enough money.  My pittance of a donation did not  not make a difference.

I asked SP, Will you ship my Tagrisso pills without receiving payment first?  I promise to pay as soon as I decide which bank provides the most conducive robbery escape route.  Of course not, she said.  You need to pay $101.85 in advance to cover your co-pay for the month supply.  The amount shocked me.  I could have used that to pay my smartphone bill.  I got to thinking, How much would it have been if HealthWell totally did not contribute? I asked SP.  She replied, $653.24 for a month’s supply.  My shock increased sixfold! I immediately paid the lower amount just in case the worse has yet to come.  UPS delivered Tagrisso pills to my home two days later.

To give me hope for the immediate future, SP told me she got financial assistance request forms from Astra Zeneca (AZ), the manufacturer of Tagrisso.  She gave the forms directly to my Onc.  He had to fill out a part and I had to do the rest.  To complete my portion, I had to request documents from the IRS to prove that I did not have to file income tax returns for 2016, the year my husband Octo died.  I qualified for filing exemption as a newly-widowed taxpayer.  According to the IRS website, most requests take 10 days processing time.

With exactly 13 pills left (of the 30 pills for which I had sprung $101.85) and a ten-day wait for the IRS response,  the co-pay subsidy situation seemed bleak.  Where would I get $7,800 a year for my co-pay?  I twiddled my thumbs then glanced at the mirror to see how my hair, which I’m letting grow longer, looked.

I kept wishing the IRS would reply faster so I could put its document in the envelop along with my financial assistance application and mail it to AZ before my Tagrisso supply dwindled to zero.

Then suddenly, out of the blue, my Onc Dr Smiley’s RN phoned and told me Dr Smiley received authorization to prescribe Tagrisso for me.  AZ will fill it for free! She added, All you need to do is drop by and sign a document.  I will fax it back to AZ immediately.

What?!!  Is another awesome thing fixing to fall on my lap?

I will keep you posted of the developments.  I have a very few Tagrisso pills left.

Do you have a similar situation? Let’s talk about it.

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The Author,  Celia Ruiz Tomlinson, just figured out how to do a caption. Hah!

 

 

 

 

 

 

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.

 

 

 

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!

 

 

 

 

 

 

 

 

 

 

 

 

My Fourth Cancerversary and the Phantom of CO-1686

What a difference four years can make! Think of it. In four years, a 14-year-old can become a high school senior, collect his diploma, get buzzed at a graduation party, and wake up to complain about feeling disenfranchised. The change is even bigger for younger children. My son told me that his son, my only grandchild, then five years old, couldn’t grasp the concept of rhymes. My son would ask his son, What rhymes with cat, and he’d proudly answer Dog! I was floored. I thought, This is not the genius I had envisioned. Clearly my DNA is not coursing through the kid’s veins. Four years later, he emailed me his desk-published book about the ramifications of sunsets complete with illustrations and a poem – a remarkable piece of creative work by a nine-year-old boy.  I did a “Yes!” and secretly apologized to the future Artiste Extraordinaire and thanked heavens I had witnessed my grandson’s metamorphosis. I can hardly wait for the budding intellectual to get his driver’s license and take his “Abi” Miss Daisy for a spin and bonding time.

Four years ago – 2012 – an oncologist diagnosed me with Non-Small Cell Lung Cancer, Stage 4.  In the span of four years, I experienced treatment with Tarceva for 20 months followed by rociletinib of CO-1686.

I reviewed my blog archives and saw no post in June 2013 about my first cancerversary. For one thing, the blog was not even a glint in my eyes that year. For another, my first Onc had given me a dire prognosis – only eight months to live without treatment, a year at the most with treatment.  The weight of the death sentence jarred my head and exiled all writing thoughts to another universe. Thus, on my first cancerversary it’s safe to guess that I was probably eating deep-fried oysters, pouring cold beer down my throat, sitting in a lotus position and waiting to keel over dead any moment. Mr Reality Check barged in, shook my head, and said, Tarceva whacked your lung cancer to remission seven months ago. What is your problem? Stunned, I must have stood up abruptly, spilled my beer, and staggered on with my life toward my second cancerversary.

I could not find any account of my second cancerversary either. I reviewed the blog archives and read all of  my June 2014  posts.  The posts glowed with CO-1686 initial promises and the awesome positivity with which my body was responding to it. The posts chronicled gung ho blow-by-blow accounts of my early days in the trial, about getting the stock market excited over my CO-1686,  about cancer diagnosis not a death sentence, yada, yada………My exhuberance was palpable!  What was I thinking? While I was at it, I could also have gushed about my second cancerversary. But no, not me. I was so intensely focused.  What cancerversary? It happens when multi-tasking talent eludes the blogger. For the same reason, my Physical Education teacher had tactfully excused me from a folk dancing group in grade school. I could not dance and listen to music at the same time.

In 2015, my third cancerversary blog post covered catharsis and ramblings about my shock upon receiving the cancer diagnosis.  It also made up for the missing accounts of the first two cancerversaries amidst a maze of convoluted wordy distractions.

Now June 2016, my fourth cancerversary, I look back in amazement at the advances made in the treatment of my type of lung cancer. When my cancer cart started rolling in 2012, outside of chemotherapy, the one-a-day pill Tarceva (erlotinib) was the only drug in US oncologists’ medicine cabinets.  Now Gilotrif (afatinib), and Tagrisso (osimertinib) keep Tarceva company. Poksceva (rociletinib) would have gladly joined them but since the trial sponsor decided to discontinue its pursuit of FDA approval, the brand name Poksceva now resides only in my head.

Love that brand name Poksceva! It has an exotic ring to it, a sense that one trial participant had an epiphany about it while trying to commune with her pole dancing inner goddess. Okay, I confess: a nosy reader came up with the moniker and the name-the-drug contest judge – that would be “moi” – adopted it.

The sponsor is phasing out the CO-1686 trial by attrition.  The result of my most recent CTscan showed STABLE. Hah! There’s no folding the trial for now.  I credit my durability to the notion that I once belonged to the family of Phantom, the comic strip hero, but I was banished from the jungle because thunder thighs didn’t look menacing in the family’s purple tights uniform.  As I spoke in Maryland last April imploring ODAC to recommend approval of rociletinib, I secretly wished for cousin THE Phantom to appear out of nowhere and save CO-1686, but it was not to be.

Meh! Things happen, but as long as the sponsor does not demand the return of the key to the silo holding the pills that keep on kicking my T790M, Dr Brevity, Poksceva, and I will soldier on.

I join in spirit anyone out there who is doing the happy dance to celebrate anything!

 

 

 

 

 

 

My CO-1686: Second Anniversary!

Oh dear! Has it been two years already? Time does fly when one is having fun.

This blog and my participation in the CO-1686 clinical trials started simultaneously in March 2014 when all I had under my belt was zero experience in blogging and clinical trials. As a matter of fact,  I have deleted the maiden post dated March 14, 2014 from the blog archive because I suddenly realized it made no sense.  It contained only the title “In Two Weeks I’ll Know More About the Biopsy,” followed by space as big as the great outdoors.  It happens when a future awesome blogger only knows how to tweet.

While creating the blog in 2014, I discovered that WordPress requires a title, so without hesitation, I named it “Cancer Laughter.”  Looking back now, I realize it was so presumptuous of me.  Cancer Laughter! What was I thinking? What if the trial drug wielded debilitating side effects that would obliterate the laugh lines off my face? What if the trial honchos yanked me out because of progression after the first CTscan?  Well, honestly, those thoughts just never occurred to me.  My mantra being  Learn something new everyday, I’m like a horse with blinders on. All I could think of at the time was that I’ll have fun learning something new in the clinical trials; fun researching new knowledge; and more fun learning blogging and sharing it with anybody who cares. Fun, fun, fun!  Sure enough, since the blog christening moment, for the most part, it has been fun.  I have found entertaining things to learn and write about –  first six months in the University of Colorado in Aurora; second six months in UCLA in Santa Monica, and twelve months in UC in Irvine.  Situation comedy abounds at reception desks, in examination rooms, emergency rooms, urgent care, and in the car playing Miss Daisy doing lottery puzzles with her loving Octo at the wheel.

Now, as I celebrate my CO-1686 second anniversary, I wonder if Motivator Extraordinaire Napoleon Hill, author of the book Think and Grow Rich,  might have been on to something when he wrote, “What your mind can conceive and believe, it can achieve.” Oooommmmm. Or maybe I’ve just been fortunate so far.

I  have never read Napoleon Hill’s famous book but when I was a 25-year-old engineer babe in the Philippines, I dated a successful businessman who talked about the book incessantly I might as well have read it myself.  Obviously, it had impacted him so profoundly and positively that he felt a need to brighten my youthful existence with its highlights. Being a hot chick in seduction mode full throttle at that time, I listened raptly to the well-intentioned Casanova, gazing at his eyes the way Nancy Reagan did to her Ronnie, and all the while I was thinking: Napoleon Hill – that’s the dude I should be dating. Moments ago, I googled Napoleon Hill’s birth date and found out that he was alive and in his mid-80’s those days. Right Octo, wrong time!

Of course, it was not all laughter the past two years. Unwholesome events that precluded smiles came and went. There were no cancer issues, but holy “tamale,” did I encounter other maladies from which senior babes with lung cancer should already  be exempt: urinary tract infection, eight months of hyperglycemia and Metformin-induced loss of appetite, overactive bladder, bacterial infection, and shingles. But I enjoyed writing about them too soon after I had staggered out from the ashes. Each experience brought me and the blog followers – or maybe just me – precious knowledge.

I consider lost appetite (LA) the worst part of the journey of the last two years. Yes, loss of connection with food, not shingles, not infections.  Food strategies, cooking, the motions of eating, and cleaning after remnants of midieval feasts consume a huge chunk of my day. Without them, during the LA episode, I might as well had been dangling by my toes inside a stacked pantry, cheerless and unfulfilled. Indeed, Mr LA single-handedly gave the self-proclaimed Guru of Positivity a nice little run for her money. And yet, after surviving the ordeal, I appreciate the benefits: (1) a junior babe figure 25 pounds lighter and (2) a diploma from the medical marijuana school of “higher” learning.

To the question What has been the best part of the journey as of the second anniversary? The answer is unequivocal: Qualifying to keep riding the trial pony after each CTscan. Insn’t that what this whole exercise is about?

And now, the CO-1686 Report Card as of post time…….drum roll……. Cancer: stable. Bloods: normal.  Side effects: zilch.  Performance Rating: 0-1.  Skinny Girl jeans size: unchanged. Other: Eight faint chicken pox dots scattered around the right eye – fading souvenirs from the Battle of the Shingles. Win some, lose some.

So onward and forward, but first: celebrate!  Chug-a-lug the brew! Beat the heck out of the pinata! Indulge the inner hedonist!  It’s Exclamation Point Day!

Happy dance, Feisty Heifer!

 

 

 

 

 

 

 

 

 

My CO-1686: How About ’em Shingles?

The year was 2013. I, freshly annointed Queen Diva Poksa, was happily ramrodding the Inspire blog Tarceva Divas and Dudes (TD&D), when one day a mysterious rash appeared on my tummy. The inch-wide belt of tiny purplish red blisters wrapped across my belly button from one hip to the other hip, ruining my pole-dancing plans. I described the rash on the TD&D thread, hoping someone who had experienced the same Tarceva side effect would share his or her coping secret. Instead of advices, I received a scare. One diva said my descriptions fit meningitis rash. I told Octo about it and true to our characters, he dragged me to the car, put the pedal on the metal all the way to the emergency room (ER). The ER doctor declared the rash “acute dermatitis” and shooed me off to my Onc, who immediately exclaimed,”Shingles!”

It’s now 2016 and safe to say that my Onc knew zip about shingles. He was dead wrong. I did not have shingles in 2013. I’m absolutely sure because I’ve just recuperated from shingles. Shingles is like orgasm; you’d know when you’ve had one. But the comparison ends there. You’d never want shingles anytime soon or ever again.

I learned from my alma mater Google University (GU) that it’s extremely important to take antiviral medications within 72 hours of the onset of shingles. How did I know facial shingles was knocking at the door? I didn’t because I had never had one. All I know is that the top of my head suddenly became ultra-sensitive to touch. It drove me nuts thinking, Could this be Stroke? Metastases to the brain? My inner genius solving the global warming problem? I took a couple of Ibuprofens and hit the sack. In the middle of the night, a painful sting on the end of my eyebrow above my nose yanked me from snoring. I audited additional courses at GU then shocked Octo with an announcement early that morning. “Let’s go see Dr GL at Urgent Care. I believe I’m getting shingles.”

My self-diagnosis was spot on!  I wanted to high five Dr GL but decided not to. He might feel threatened by the competition. He started me on Valacyclovir  – perfect timing – within 24 hours of the onset of shingles. The drug does not kill the virus; it stops the virus from replicating, thus decreasing the individual’s suffering. The shingles virus just runs its course; there is no cure for it. Why are incurable maladies chasing me as my age careens toward a hundred?

I also found out from GU that shingles occurs when the virus that causes chickenpox starts up again in the body. After a bout of chickenpox, the virus “sleeps” or stays dormant in the nerve roots. In some people, it stays dormant forever. In others, the virus “wakes up” when disease, stress, or aging weakens the immune system.

I learned further that shingles occurs in different parts of the human body, affecting one side only, along a nerve line. NFL great Terry Bradshow shows one example in the TV ad that peddles vaccine for shingles. In my case, the shingles virus temporarily homesteaded on my face, installing red relief maps on my  forehead similar those of Mikhail Gorbacev’s birthmarks.

Shingles inflicts the worst pain I’ve ever known and I’ve experienced a lot. I had had a full-mouth gum operation, hysterectomy, goiter and cataract surgery. I had delivered a baby the natural way. This revelation should surprise no one because this senior babe is waaaay past the age of acne.

One conversation during my late pregnancy in 1974 is forever etched in my memory. Hours before my labor pains began, a friend asked me, “Do you want your husband to be in the delivery room with you?” What was she thinking? “No!” I deadpanned.  “I don’t want my husband there, I don’t want the doctor there, I don’t want me there!” But I couldn’t do childbirth in absentia. I had to be there. Women who have experienced natural childbirth will know the facial shingles pain as I’ll describe it. The headache was extremely excruciating it was like delivering a baby through the ear canal. If I were a horse, I would have been shot dead already.

The shingles virus finally ran its course.  My face looks nearly normal again. People do a double take on it now because it reminds them of the mean mama-san in a Jackie Chan movie.

The shingles event capped my 2015 fourth quarter from hell that started at the end of  the Shanghai/Tokyo CTscan celebration trip, which gave me a bacterial infection, which was disposed of in two days by my immune system helped by the antibiotic Azithromycin. Then I paid the price for Azithromycin’s help: two weeks of malaise from its knock-down side effects.  Then while my heroic immune system was resting, the chickenpox virus rose from the dead and harassed my face. All these things happened just because I had celebrated my CO-1686’s latest stable CTscans! Fortunately, being the self-proclaimed guru of positivity, I dwell on the awesomeness of the first three quarters and the knowledge acquired in the fourth quarter of 2015.

I’ve just finished dusting myself up and am now ready to face the new year 2016.

The moral of the story? What doesn’t kill you makes you strong. Happy dance, Feisty Heifer!

Happy New Year!