One Tagrisso Story

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So HealthWell Foundation (HWF) had no issues with the Specialty Pharmacy’s application on my behalf for the $3K+ monthly co-payment of Tagrisso.  Within two days of hearing its name, I received HWF’s letter that screamed APPROVED on the heading! It told me to contact the Specialty Pharmacy to get the delivery of the pills started.  How can anyone not be impressed with such speedy service?

However at the same precise moment I also received a letter from the Specialty Pharmacy alarming me that the information in my file was incomplete and they could not finish the application process on my behalf and to call them as soon as possible to avoid delay! Fortunately, the recipient of the wildly conflicting messages is an awesome genius who completely understands the shortcomings of mere mortals. I picked up my smart phone and with a little tremble in my voice, feigned confusion, but in the end, simply asked, Okay, when are you shipping the Tagrisso? And the rep answered, Tomorrow. Be sure to be at home to sign for it otherwise the delivery guy will turn around and take the package back with him. I could not imagine the bureaucracy that would ensue if such an event happened. She gave me the tracking number, which I handily found in the UPS’ hi-tech tracking system.  It showed time delivery window: Between 6:30 a.m. and closing time, which was 7:00p.m.  I thought, Wow! That pins it down close enough. I spoke to a UPS representative and played a scenario for her when she couldn’t make the delivery window smaller:  What if I wait all day and it’s already 7:00p.m. and the package has not yet arrived?  She replied, That means there are too many deliveries and he’ll keep delivering packages until you get yours.  That knocked me for a loop.  I had bought my tiny manor in the retirement-resort-living-at-its-best to sunbathe near the hot whirlpool or rub elbows with fun people at events during the day, then sleep in the manor at night. Pacing the manor carpet for 12 straight hours had never occurred to me.

Living alone, I had no choice but to hang around the manor to wait. It happens when the Diva’s days of delegating tasks are long gone. So wait for the UPS dude, I did. I was sure about the dude thing because I have never received a UPS delivery from a dudette. Finally, at around 5:00 p.m., my hero came bearing the package. He gave it to me in exchange for my signature on his hand-held computer tracker.

I tore into the corrugated carton box like mad and found (1) a plastic bottle containing 30 Tagrisso pills inside a see-through plastic bag marked Chemotherapy and (2) Product literature – everything one ever wants to know about Tagrisso: side effects, conflicts with other drugs,  the sun, people, etc. I had a major concern: What about wine or beer? It said, Limit alcohol consumption. Aha! There’s a margin for tolerance. I liked that.  I had another question: When is the best time to take Tagrisso? It said, Take it once a day at the same time everyday so you don’t forget it. Take it with or without food.

It was almost 6:00p.m. and a hot deliberation was raging in my head.  Should I take the first pill now? Why not? What good does it do to wait for tomorrow? I remember reading that tomorrow waits for no one. The literature said one of the reported side effects is shortness of breath. What if I have shortness of breath while I’m snoring? I could wake up dead in the morning! Maybe that’s the reason to wait for crack of dawn, take the first pill, then have all day to monitor side effects like dizziness, nausea, diarrhea, shortness of breath, yada, yada. Nah. Why did the Tagrisso docs not express themselves exactly against taking the very first pill at night?  All the pill container said on the label was, This drug may impair your ability to drive or operate machinery. No prob. I had no immediate plans to operate a backhoe that night. It also said USE CARE until you become familiar with its effects. Define CARE.  I concocted a couple of lame definitions that lead me to the eureka moment: Today is the day. Tonight I take my very first pill and henceforth every 6:00p.m. every day.  I bravely swallowed one 0.5cm x 1.5cm 80mg oval pinkish pill, chug-a-lugged a glass of water, and plastered a smile of satisfaction across my face.

Just before I hit the sack, I remembered something –  to allow for some drama should shortness of breath occur in the middle of the night. When I laid me down to sleep, I positioned my arms like an X on top of my chest a la Cleopatra minus the crooks.

Around 3:00 a.m. my  stomach growled and woke me up.  I was starved.  It happens when my blood glucose is around 75 or 80. My body talks to me, I listen and obey.  But wait! As I was walking to the kitchen to fix me something to silence my stomach, I remembered the very first Tagrisso coursing through every cell of my body.  Was I having side effects? Obviously I did not have a shortness of breath but a shortness of chow! Maybe something else had happened. I rushed to the bathroom and inspected my body for signs of side effects that I had read from posts at Inspire.  Rashes on the face or body? None. Headache? Dizzy? Pain? Nope.  Grandma Honey had written about her eyelashes growing long, like they did on Tarceva.  I inspected mine, ready to bat them shamelessly if they had grown a millimeter during the past 9 hours. Nothing there. Finding nothing untoward, I devoured my midnight snack and crawled back to bed.

I’ve been on Tagrisso for half a month now and have seen zero side effects.  Nothing. No nausea, headaches, diarrhea, rashes, shortness of breath, dry skin, cracking nails, mouth sores. Nothing. I wonder if Tagrisso is doing something or just sitting there. That’s the same thing I said during the first four months of zero side effects on my CO-1686.

That’s my Tagrisso story. I’d love to hear yours, if you have any.

The Dawn of a New Day

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During my recent lung infection event, in consideration of others, I went on a self-imposed quarantine, remembering the disgusting sound of a hacking, loaded, incessant cough in a fine dining restaurant. I took plenty of rest and did only the minimum work required of me, like taking to the trash bin bags of yucky germy tissue papers. Waking up cough-free the other morning, I proudly declared: Today is the day. No more Ms Nice Guy in isolation.  Society, here I come to whoop it up again. It starts today!

At 7:00a.m., spring restored in my steps, I sashayed from the bedroom to the Great Room and sat down on my favorite dining chair, the one near the chair of my roommate, my backpack. I tested my blood glucose. Perfect. The numbers have been perfect since I stopped taking Poksceva one week earlier. What a relief it was to have no Metformin and hyperglycemia kicking me around any more.

Sipping hot peppermint tea between nibbles of soft-bite mini almond biscotti, I decided to ratchet up the celebration of the brand new day with a healthy, hearty breakfast: six fresh grape tomatoes for my dose of lycopene, three points of New Zealand rack of lamb for protein, fresh blueberries, sweet cherries, and apple slices for vitamins and potassium. For carbs, instead of a baked potato, I had a bag of baked crunchy Cheetos. Hey, gotta have a little junk food. Life is the pits without occasional junk food.

While savoring the gourmet meal in solitude, all sorts of thoughts cascaded into my mind. It happens when one blog ends and a new one begins.  One cancer treatment ends and a new one begins. So much is unknown in the new ones, although one constant remains. In life, cancer or no cancer, conking out sooner or later is an absolute certainty.

I have been without cancer treatment since I stopped taking Poksceva and not starting on Tagrisso.  A representative of the specialty pharmacy that sells Tagrisso had informed me that my co-pay would be $3,274.38 for one month supply. I told her, I’ll pass. And choose to literally pass. My personal wealth can be best used in the perpetuation of my DNA, as in sending my grandson to the Ivy League college of his choice, should there be a bidding war over him. She had scrambled to try to get the manufacturer to take care of my co-pay.  Consequently Dr Brevity received forms to fill out and I had to produce proof of income. Who knows how long before the good doctor gets to my paperwork and if my proof of income qualifies for assistance.  There are no guarantees. My newly reactivated tumor is a ticking time bomb.

A telephone call interrupted the swirl of thoughts in my head.  It was the specialty pharmacy’s representative. She said a foundation – Healthwell Foundation – wants to assist me. She asked a few personal questions, then for my permission to allow her to fill out the application form on my behalf. After it is approved, she said, usually within 48 hours, she’ll ship my supply of Tagrisso pills. How did I get such an incredible deal?

Drum roll please…..A new day has dawned!

A Postcard From the Pits

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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

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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?!

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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

My Right Eye Wouldn’t Open!

It would be awesome to reach the ripe old age of 145 except there is one main drawback: The body rots. When I read about living supercentenarians, I can’t help but analyze their photographs. I see leathery skin with more wrinkles than a sharpei puppy, tired eyes half closed in the middle of what looks like bags of potatoes, and sunken mouths. Okay, in fairness, exceptions do exist, but they are still ancient frail packages of  bones wrapped with parched skin, ravaged by time but still breathing.

In all the interviews, supercentenarians answer the question, What’s the secret of your longevity? I don’t remember reading them answering the question, How many medical maladies have you survived? Should I ever become a supercentenarian, I’d insist that the interviewer ask me the question because I have plenty to brag about. Of course I’m assuming when that time comes,  I’m not frantically shuffling around asking everybody, Who am I? Who’s my Daddy? with panic in my eyes.

Which takes me back to my most recent mysterious medical experience that occurred in the small hours of one morning last August. Something happened to my right eye that woke me up. I cupped my hand over it and it felt like a mound of pebbles. I thought, What could that be? I moved my fingers to my left eye. It felt normal. I tried to blink my right eye but it wouldn’t open. I pried it open with my fingers and I could see the lights amidst the darkness of the bedroom. I alternated opening each eye and confirmed that both eyes did have vision. Finally, I tried to resume my disrupted sleep, but couldn’t. I had this crying need to look at the mirror to see what happened to my right eye.

In front of the bathroom mirror, I pried open my right eye and what I saw shocked me. My right eyeball was 100% textured pitch black. Amazingly I had this calm feeling, a sense that everything was going to be all right. I returned to snoring.

That morning, while my little sister and I were sipping our hot coffee, she asked about my right eye. In response I deadpanned, We can’t keep much longer our family secret….that I am half-Filipino, half Roswell alien.

My insurance eye care center took me in as an emergency patient later that morning. A parade of eye care technicians went through the motions to check my vision, eye pressure, and blood pressure. They ordered me around.  Put your chin here, your forehead here. Read this, look at my ear. Don’t blink.   They asked if I was taking blood thinners. I answered no every time.  Soon the Big Kahuna – the real doctor of Ophthalmology, the one specialized in diseases of the eyes – sashayed into the examination room.   A comely young Caucasian with fascinatingly arched eyebrows that seemed to announce, C’est moi!, she asked me if I experienced pain then or before the event. I said no.  She gave her verdict: This thing happens for no reason. No worries. Nothing needs to be done but I want you to moisturize your eyes several times a day.

Come on!  Some doctors are just so stingy with their knowledge as if their brains would shrink if they shared a little.

You’d think that since I had dodged the bullet, I’d just be happy with the good doctor’s pronouncement.  Oh no, not me.  I’m an engineer; I needed to know why I was suddenly outed as part Roswell alien.  I needed to unlock the mysterious secret that Dr C’est Moi was keeping from me.

At this point I invoke the mother of all disclaimers. I am not giving medical advice here because I am not a physician.  The only claim to fame I have related to the medical profession is that I happen to personally know a man who is doing time in prison for impersonating a doctor in Saudi Arabia.

I rushed to Google University (GU) and audited the course Eyeballs 101.

On one site, a man had the same story as mine but a major headache preceded his episode. A real doctor decided the root of his problem was brain-related. It made sense for him but not for me. No aches anywhere preceded mine.

Discussions in one legitimate medical website after another cover bleeding of the eye capillaries. They all agree the hemorrhage is not serious, contagious, chronic, acute,   hereditary, terminal, all the words I wanted to read. Straining  can cause it, which made sense to me.  Immediately before my eye hemorrhage event, I had battled constipation, given it my best shot and won.

So I bought Dr C’est Moi’s verdict, but when I asked her how long before my right eye would return to normal, she answered, Very long time, which sounded to me at my age, like, Be prepared to take it to the grave.  I refused to buy that. Besides, I only intend to take to the grave the few remaining teeth in my head.  I went back to GU to find the answer to my question.

Professional boxers’ faces get pummeled by their superior opponents and their eyes become swollen black and blue and the eyeballs bloodied inside like my capillary hemorrhage.  I have seen fighters during and after bouts, then weeks later, they are on TV being interviewed, looking normal, as if nothing ever happened.  So in my search, I asked the question, How long does it take for boxers’ shiners to return to normal? One professional trainer said, If your eyes don’t seem to get well in three weeks, see your doctor. I liked that.  I noticed on the fourth day of my episode, the normally white part of my eyeball had turned from tar black to purple, which meant my body had been absorbing the blood.  Amazing. As of posting time, my right eye is back to normal. I’m batting my lashes again at anyone who makes eye contact.

Life after retirement has indeed thrown me a domino of problems. My aging body is drying up,  which causes constipation, which causes straining, which causes eye hemorrhage.  Hydrate, hydrate, hydrate is my battle cry!

Which takes me back to the supercentenarians.  They probably don’t go for the jugular when they battle constipation, proving that sometimes, Win some lose some is a healthy proposition.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Moving on After the Storm

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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

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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.

 

 

 

 

 

 

 

 

 

 

 

My CO-1686 Cramps in Hands, Legs, and Feet

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I get a kick out of warning anyone who is younger than me to never ever get old because getting old is not for amateurs.  Of course all I get is the same look that I used to give a 25-year-old girl friend of mine when I was 18 years old and at the peak of self-perceived youthful pulchritude: the puppy-dog eyes that said, You wretched old maid!

For one week last month, I experienced something that I had never experienced in my youth: Leg cramps or Charley Horses.  They woke me up in the middle of every night. Those twisters hurt!  Fortunately, getting out of bed and pacing took care of the cramps.  Night after night, one leg or the other cramped. Then one morning as I was chopping onions for a breakfast omelet, my fingers locked in position.

Something is wrong with me! I announced to my husband Octo.  His eyes peeked above the LA Times front page and said with an inflection, Well? He probably wanted to add, So what else is new?

One day the cramping reached a crescendo.  Entered the mother of all Charley Horses. Both my legs cramped simultaneously, sending me writhing in pain in a spread-eagle position on top of the bed! I screamed and cried real tears.  The live drama affected Octo profoundly.  He had been used to the roar of laughter, not cries of anguish. Let us try massage, he offered. He got a jar of what smelled like Ben-Gay and applied the stuff on my calves and feet with his limp fingers. Give it more pressure, I groaned. He continued with the limp strokes then asked, Does that feel better?   Poor Octo! He meant so well that I did not have the heart to scream, THAT IS NOT MASSAGING; THAT IS FONDLING! Seeing no relief on my face, he quit and gave me two Ibuprofens, which I took enthusiastically.  I would have swallowed anything to alleviate the pain. I would have opened my mouth as wide as a sinkhole and let him pour my leftover MMJ (medical marijuana) appetite drops down my throat. In about 30 minutes, my ten toes pointed in the proper direction and my whole body relaxed.

As soon as I could stand, I rushed to Google University (GU) and did some serious research on this Charley Horse thing.

To gain wide-range knowledge, I went general: “Cramps.” Bam! Out came all sorts of information on cramps during menstrual periods.  It cracked me up. I gave up periods several decades ago.

I fine-tuned the search: “Cramps without periods.” Wham! Things got worse.  Titles on cramps during pregnancy scrolled down one after another.

I was batting zip!  GU and I were in Miscommunication City big time. However, the results gave me a rude awakening that shocked me totally.  I could not believe other women also suffer from cramps. How could that be possible? It happens when the blogger thinks the sun only rises for her.

I went straight to the point: “Cramps in legs, hands, and feet.”  Bingo!  The site listed causes of and treatments for the malady.

According to GU, exercising, lack of potassium and magnesium, dehydration, can cause  cramps in the legs, feet, and hands especially of older people because they lose muscles  and the remaining muscles get overstressed easily.

Right off the bat  I eliminated rociletinib as the cause. After almost 2-1/2 years on the CO-1686 now-non-clinical trial with no such side effect, why now?  Of course, anything is possible. Next, I eliminated lack of magnesium and potassium because Dr Brevity always assures me, The labs are good.  Exercising did not factor in because I was quietly minding my own business snoring when each one-leg cramp happened. I was sitting on the edge of the bed planning on painting my toenails acid green when the spread-eagle Charley Horse occurred.

Dehydration emerged as the clear perp.  Facts supported it.  The morning before the Mother of all Charley Horses attacked, I had taken an hour leisurely walk along the leafy creek. To protect me from the sun, I used the Royal Umbrella, the one Octo had bought as a souvenir at the Buckingham Palace during our 2009 trip. Never a souvenir enthusiast, I remember musing at that time, Oh for stiff-upper-lip’s sakes, an umbrella souvenir from England!  I’d buy a souvenir reminiscent of the British Empire history like a miniature replica of the guillotine that chopped off Anne Boleyn’s head.

I recall that after returning home from the walk, I perspired profusely.  I probably just drank enough water to quench my thirst when I should have chug-a-lugged a quart more to replace the fluids lost from my remaining muscles.  Plus, during the week of the nightly one-leg cramp, my body had already been talking to me about needing hydration. The root of the Charley Horse problem: I had stopped practicing what I preach, Hydrate, Hydrate, Hydrate! It happens when the senior babe reverts to denial mode that she’s been turning into a prune for quite some time.

It’s been a month since I resumed conscious hydration.  Neither Mrs Charley Horse nor any of her nasty kids has come to visit.

GU came through again! And incidentally the latest scans and labs are Stable and Unremarkable respectively. The CO-1686 non-trial keeps on truckin’.

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A footnote on Octo:

In the time span between the draft and the publication of this post, Octo signed on to hospice.  He had been diagnosed with Acute Myeloid Leukemia in March. My once-super-healthy 82-year-old caregiver and I have traded places unwittingly. He had been in the front-row seat of my cancer journey and now I have a ring-side view of his hospice care. Devotions take turns as the world turns.

 

 

 

 

My CO-1686: Elevated Liver Enzymes

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The liver enzyme elevation was just another episode in Feisty Heifer’s continuing saga in the CO-1686 clinical trial boat as it sails toward the sunset.  I want to share the story because (a) it has useful information for anyone who cares to know, and (b) I get my jollies out of fantasizing that some people actually read my blog.

Two weeks before the ODAC speech trip in April, I had my regularly scheduled blood analysis and consultation with the Good Doctor. The drill has become second-nature to the registration clerk who asks me every time if anything has changed in my insurance, to the phlebotomist who draws my blood with a smile and a small personal story that I draw from her, to the trial coordinator who collects my now-inconsequential dosing diary, and to Dr Brevity who zooms in and out of my life in a fraction of an hour. Usually he tells me, The labs are good, and proceeds to the stethoscope motions that signal the end of me in his busy schedule. But that day was fateful.  Your liver enzymes are elevated, he muttered.  How elevated ? I asked, perturbed, but with the unmistakeable air of authority of a blogger who trawls Google University (GU), I added, Are you talking about ALT and AST?  Yes, he answered, and gave me the numbers: ALT 125 (normal range 7-52) and  AST 88 (normal range 13-39) then asked, What have you been eating? Seafood?

OMG! My liver enzymes were more than twice the normal upper range.  Suddenly visions of my liver oozing toxic crud into my bloodstream flashed in my head. I thought for a moment, then light dawned.  I remembered lately I had been eating a lot of deep-fried oysters and loading up on sushi for no celebratory reason. I am simply an environmental eater kinda old chick.  Place a heaping platter of jalapeno-topped nachos in front of me while we chat and next thing we know they’ve evaporated. That’s assuming the bar maid is plying us with ice-cold cerveza.  For my conversation with Dr Brevity, I limited the verbiage to oysters. You have to be careful with those things, he warned. I disagreed and tried to dazzle him with scientific data:  I fry the oysters in 375-degree Fahrenheit hot oil for 6 minutes, enough to kill the pathogens. Unimpressed, he strode out of the examination room and moved on with his life.

As soon as I got home, I rushed to GU and audited some courses. At this point, I must recite the mother of all disclosures. I am not a physician. My academic attainment closest to a medical degree is that the Big Kahuna of Lung Cansah Research refers to me as “the diva.” I’m not dispensing medical advice; I just have this crying need to showcase the diva’s Inner Healer.

First, GU gives definitions of ALT and AST. Translated simply, they are stuff that may indicate liver damage. According to GU, 2 to 3 times the normal value of ALT and AST is considered mild. The mild elevations might be caused by food, alcohol, or certain drugs. Maybe the numbers are something to worry about, maybe not.  I zeroed in on the worry angle. Worrying in moderation is good. It starts the brain to focus on a problem and find solutions.

I eliminated CO-1686 as the cause of my liver enzyme elevation because why now after having been on the trial for nearly 2-1/2 years? Of course, anything is possible.  I assumed for one second that oysters were the culprit, then thought, Nah! I had been eating those things raw since time immemorial with no consequences except serious allergic reaction early on, which I fought and beat resulting in immunity to oysters. Of course, my self-styled immunotherapy at age 8 could have killed me. I’d even dare say those oysters were contaminated because growing up in the Manila slum where hunger trumped hygiene, contaminants were a staple in the diet. It was a place where sanitary food, when ingested, induced withdrawal symptoms. So I searched for other causes of elevated liver enzymes that might match my circumstances.

I read that overexercising can aggravate muscles and cause them to release ALT and AST that adversely affect liver enzyme tests.  Now, we’re cookin’! In the week preceeding the blood test, my husband Octo had fallen ill and was confined in a hospital just outside our gated community.  Being the perfect wife that I fancy myself as, I visited him daily.  I also figured it was a great opportunity to get my exercise out of the way.  Talk about exercise! My daily visit involved an hour round trip uphill, downhill brisk walk.  Call that my cardio.  My arms got their workout as I waved them vigorously at the gate guards.  The big smile that I flashed to anybody who made eye contact exercised my facial muscles. The spring in my steps massaged my calves.  It happens when one wears Z-Coil shoes.

I remember at the end of that week, I felt like I had been trampled by stampeding bulls.  Every muscle of my body ached.  It admonished me that all I need at my age is a leisurely 20-minute walk along a leafy creek – not the Bataan Death March kind of trek.

I listened to my body like I have always done.  I chilled in the physical exercise department in the three weeks leading to the next blood test.

The day of reckoning came.

Labs are good, muttered Dr Brevity. How about the elevated liver enzymes? I asked. What liver enzymes? he countered. He had already forgotten about them and nothing about them in the report grabbed his face. The one-off problem had resolved.

Fresh oysters tossed in my homemade gumbo sounds pretty yummy right now.