My Trouble Finder

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The Author Did Manage to Get up From This Yoga Pose Unassisted
My day’s highlight came early. The secretary of my Primary Care Physician (PCP) phoned me to remind me of my upcoming appointment with him.  Immediately I cringed. Uh-oh, it’s time again for the good doctor to look for unpleasant issues with my body.  It’s his job, his livelihood.

So at the appointed hour, I showed up at the PCP’s office, braced to hear everything that’s the matter with me.  The handsome Southern Orange County doctor scooted into the examination room where I sat after my current weight and vitals had been established. He scoots because a water skiing accident in his youth smashed his tailbone, so I heard.

He started the session by reporting to me the results of the pre-visit blood tests.  Most results are good, he declared with a smile.  But your kidney function test numbers aren’t so good.  We call those numbers Chronic Kidney Disease (CKD) Stage 3.  Stage 3? I asked with feigned shock.  That sounds awfully close to Stage 4.  My lung cancer is stage 4. Does this mean my body is in various stages of decay? He replied, I won’t say that. The previous test results were the same, which means the CKD is stable.  Aha, I said. That would be me: Ms Stable.  Besides, he continued, with CKD your blood pressure should be out of control, but it’s great, and you don’t have other symptoms. We’ll take another blood test in a month and monitor the CKD.

He looked at my weight on the chart.  Let us see if you have lost any weight, he said.  Not me, I disagreed right away.  It’s just perfect right now for a string bikini.  He responded: You’re the hippest senior I see.  No other senior comes in here for a check up carrying a loaded backpack and wearing Z-Coil shoes.

He kneaded my neck, searching for swollen lymph nodes.  Nothing there, he announced. Then he ordered me to sit on the examination table: Get up here, Slim.  He raised the back of my aquamarine blouse to do some stethoscope motions on bare skin.  A strawberry-ice-cream-colored bra greeted his eyeballs.  Sexy bra, he said, and laughed. I’m not big on color coordinated underwear, I confessed, and we laughed.  Having found nothing wrong with me yet, he proceeded to drill a small flashlight into my nostrils.  You should have allergies, he insisted. But I don’t, I said. He saw nothing and gave up.

Tell me before we say goodbye if there’s anything wrong with you, PCP enjoined with a sense of urgency.  Under pressure I felt I had to say something: Bunion. Ten years ago I spent a lot time pondering what to do with the bunion on the outside of the big toe of my right foot.  Then came the lung cancer Stage 4 diagnosis and eight months to live prognosis.  Suddenly the bunion issue became the least of my concerns. Now it’s front and center again.  He was quick: Good!  I’ll refer you to Dr Paa (fictitious name; “paa” is Filipino word for feet).  He will advise you to either change your shoes or your foot. I exclaimed, I like it! He took advantage of my enthusiasm, I still want you to get a colonoscopy.  He was so totally pushing.  The last gastroenterologist I saw said nothing needed to be done.  Okay, I grudgingly agreed.  I’m retired.  I’ve nothing else to do.

In conclusion, PCP’s nurse gave me a pneumonia shot and a flu shot.  Then PCP gave her instructions: (a) Get approvals for a new gastroenterologist for the colonoscopy, a podiatrist for the bunion, and the opthalmologist for the annual eye exam.  (b) Prepare a requisition for kidney and liver function blood tests to be performed in mid-November.   Finally, he turned to me and said, Next time bring all the medicines you’re taking. I just feel better when I see them. My turn to think.  I suspect he remembered that instead of the calcium pills prescribed by him, I had bought calcium gummies.  I had complained that the calcium pills were too big and like horse pills.  Get the petites, he had ordered. He probably wanted to be sure next time that I am in compliance.

PCP was determined to keep the retired senior babe shuffling.

Is your PCP like my PCP?

 

 

 

 

 

 

 

 

 

 

Probiotics 101


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A Cousin of the Author’s Kimchi

Ok, let’s cut to the chase. This post is about kimchi, the famous Korean hot and spicy fermented napa cabbage delicacy.

What does kimchi have to do with cancer?  Well, while surfing the internet, I read kimchi contains probiotics and probiotics are all the rage these days and have been for a while now.  I decided I’d get in on the action. Gotta be where the action is, especially when it comes to strengthening the immune system, which is usually compromised in  cancer sufferers.

Health enthusiasts mention kefir, yogurt, and fermented vegetables such as sauerkraut as excellent sources of natural – meaning not store-bought in pill form – probiotics.  One cancer-free best friend of mine once told me that urinary tract infections (UTI) used to harass her several times a year but not any more after she started taking probiotic pills. Of course she has this tendency to try to topple me from my perch as the drama queen.

To satisfy my curiosity and get answers to my questions about probiotics, I revisited my alma mater Google University (GU).  Sure enough, entry after entry discusses probiotic properties found in fermented cabbage such as sauerkraut and kimchi.

I’ll focus on kimchi.

GU defines a probiotic substance as a microorganism introduced into the body for its beneficial qualities. It translates to my simple English as good bacteria. We know the bad kind, the ones that bring bad news such as pain, nausea, shortness of breath, the runs, etc.  Here we’re talking about the good guys, the kind that by sheer number can overpower the bad dudes and allow for a healthy body to flourish.

Some scientists actually investigated the types of good bacteria that populate kimchi. They found several types that have the capability to annihilate the bad bacteria in the intestines.  That fact drove me to rekindle my interest in making kimchi regularly like I used to.

Many years ago, I had a dear Korean friend named Jeannie.  Being both Asian immigrants married to Caucasians, we bonded easily. She owned a Mexican restaurant located in a roadside motel in Cuba, a small town in New Mexico some 70 miles northwest from Albuquerque. My engineering company had a construction staking project in Cuba and my surveyors stayed there for the duration of the project.  Jeannie and I found a common real estate to do a show-and-tell on making kimchi from scratch. She demonstrated how she and her mother had done it all their lives.  Then in a small bowl, she gave me  a good serving of her recently fermented homemade kimchi.  I remember how awesome it tasted.

Upon my return to Albuquerque, I embarked on kimchi construction based on my newly acquired knowledge.  I assembled the requirements: (a) a large jar. My late first husband got it from a bar after the last maraschino cherry was removed from the glass jar to adorn a pina colada drink; (b) locally available fresh ingredients – a couple of heads of fresh napa cabbage, garlic, and ginger; “bagoong” (fermented shrimp Filipino style), sugar, and New Mexico powdered hot chilis.

It was amazing how the concoction developed a life of its own from assembly through fermentation, which took seven days.  I made kimchi regularly for years.  I liked to claim it was a talent and often told anyone who cared to listen that I had very few talents but the few I had were outstanding.  Then I stopped. Hanging out at the bar drinking beer was far more exciting than filling a large jar with vegetables for the purpose of making them saucy and sour.  Those were the days when the word cancer was just a word.

Fast forward to modern times when cancer is a disease that hit home, blogging is a pastime and probiotics are the in thing.  I made kimchi again based on my memory of the days of Jeannie, Cuba, and the survey project,  wondering if my new kimchi would turn out as good as my old ones. By golly, it did!  Thus began again the predictable presence of kimchi in the refrigerator.

I’ve been back to eating kimchi regularly because it’s there and I’m an environmental eater.  I notice the UTI has not returned in a while.  My bff might just have a point.

Do you like kimchi?

 

 

 

 

 

 

 

Insurance Company Agreed With Me!

Make way for a Victory Lap! Yup, that would be for me! It’s Exclamation Point Day!

Here’s the latest happening on the fight for Freedom from Debt.

The insurance company (IC) has, after careful review, agreed with me.  They’ve decided to reprocess my claim.

Let’s review the case a little.  Twice the IC denied my request for payment of the laboratory services meant to determine the new mutation of my lung cancer tumor. The reason for the first denial was that Dr Brevity did not furnish the requested paperwork. After Dr Brevity furnished the paperwork, came the second denial with a new reason: My Primary Care Physician from the IC network was not the requestor of the services.

The IC changed the decision because the diagnosis is lung cancer for which molecular pathology testing (Guardant) was requested.  The Medicare Program Integrity Manual Chapter 13, Section 13.5.1 indicates that in order to be covered under Medicare, a service shall be reasonable and necessary including service being furnished in a setting appropriate to the patient’s medical needs and condition and one that meets but does not exceed the patient’s medical needs.

Based on this decision, my claim has been reprocessed.  According to Medicare regulations, this claim must be reprocessed within 60 calendar days of the date they received my appeal.

In view of the latest event, I am tempted to crow that I’m an indomitable senior babe who refuses to bend to anyone who gets in my way.  But I can’t do that.  Tons of help came my way.  Guardant represented me in my last appeal.  Seasoned Medicare case appellants, they definitely know they’d get paid when I get paid.  In addition, the IC wrote me the letter of reconsideration. All I did was read the letter and expressed everything in first person.   Less than 30% of the language in the preceding paragraphs is mine.  In other words, I’m no authority here;  just an honest crafty blogger who tries to get away with sounding impressive.  That’s all.

Now success-in-progress has gotten me intoxicated.  I’m staggering on, figuring out how to totally eliminate any co-pay.  Push a little farther while the momentum exists!

Isn’t that an awesome turn of events?

 

 

Nearly 8 Months on Tagrisso

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On the evening of January 18th, 2017 I took my very first Tagrisso pill.  It had been 14 days after the CO-1686 boat unceremoniously abandoned me at sea. Captain Poksceva aka rociletinib refused to play with me any more.  It was okay with me.  It’s the attitude I take when bawling and squalling are not an option.  I square my shoulders, primp my growing platinum blond hair, and sashay forward.

Now it’s August and I realize getting on the roaring Tagrisso train after progression on Poksceva was a good third act after Tarceva and Poksceva.  My last CTscan which was done in April this year, showed Tagrisso had devoured 80% of the tumor.  The shrinkage calculation used simple mathematical proportions. The cancer medical professionals probably have a more sophisticated discombobulating method of computing the shrinkage of the nasty main tumor at the bottom of the lower lobe of my left lung, but who cares?  Shrinkage is shrinkage in any language.

Let’s look back at the distant past a little.

I have been around the shrinkage bend a couple of times.  The first time was five years ago after 100 days (3 months 10 days) on Tarceva.  It was the same thing.  Tarceva gobbled 80% of the tumor right off the bat, leaving 20% to hang around my lung.  For the next 17 months the CTscan image every three months showed the same 20%.  The good Onc, one exchange Irish doctor, and myself hoped it was only scar tissue.  There was really no CTscan image afterwards that showed the 20 percenter increased in size, but the world-class Onc got a wild-haired notion to make fine-toothed-comb analysis of my lung images. After careful and thorough eyeballing of old and new images,  he noticed three tiny nodules that weren’t there before.  It was an Aha! moment for him.  I forgot what kind of moment it was for me but it would be safe to say it was a hacked-off moment. Henceforth he referred to the three tiny discoveries as little fellas that confirmed his suspicion of a progression.

Nearly 3 years of CTscan images under the CO-1686 trial showed the same 20 percenter. Nothing grew nothing new.  Not a word on the little fellas. I imagine they are still there among the tiny nodules too many to count in both of my lungs. They may be cancerous, maybe not.  No one knows what they are.  What matters is that they are not giving me anything –  no pains, no shortness of breath, no coughs, no loss of appetite.  Maybe they are like freckles on a redhead kid’s face. They are just there.

Back to the present…

Then the 20 percenter showed progression in spite of the CO-1686 drug.  The clinical trial folks, with whom I developed a good relationship, had to transfer my care to a one-man-band onc whom I named Dr Smiley.

Dr Smiley examined me the other day 4 months after the last scan.  He jammed his bare hand in my armpits to feel swollen lymph nodes.  He found none. He felt dampness instead.  Walking in the hot sun even under an umbrella drenched me. He kneaded my neck to feel swollen lymph nodes.  He discovered none.  He noticed instead hidden on a fold on my neck the faint seam of my long-ago parathyroid surgery. He looked for swollen feet and ankles. Nothing there.  He was dictating his findings to a young techie girl.  He listened to my lungs and said, There is a velcro sound from the left lung.  I said, Whoa! What is the velcro doing in my left lung?  He answered, That’s probably where your cancer was. I liked the past tense.

Dr Smiley concluded the visit by announcing that he will not order a CTscan this time because the images and report from the last one are fantastic, my present vitals are great, and I have no unexplained weight loss, pain, shortness of breath, coughs, and other symptoms.  He set the next appointment: November 28th, bloods and CTscan.  That would put me on the every-six-months schedule.

I am not complaining.  He seems to know what he’s doing.

 

 

 

 

 

 

 

 

An Interview With a Recent Clinical Trial Participant

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After retirement, the once-hot-shot author reverted to the old means of communication

Please allow me to be clear right off the bat.  I did not interview anyone.  Someone interviewed me. So I’m the subject here.  It’s always all about me.

What happened was, one day I was quietly minding my own business deleting junk emails when an email came in from a research group.  It said I had been identified as a recent cancer drug clinical trial participant.  Would I be interested in being interviewed? They would like to have my input on how cancer drug clinical trials can be improved and they assured me that my participation would help mankind in so many ways.

Naturally, my ever loving heart which is always in the right place when it comes to helping the human race convinced me….well.. in a heartbeat to participate in the project. The $100 compensation for the one-hour engagement also kind of helped to seal my conviction.

At first the research group wanted to do a webcam interview.  I loved the idea because it would enable the interviewer and me to size up each other.  I also like to eyeball anyone to whom I’m talking.  I have watched enough Investigation Discovery True Crime programs to know it’s good to commit to memory the perpetrator’s face.  Plus the video would give me an opportunity for some dramatic posing, provocative fashion, and over-acting.  But, alas, the notion was mercifully short-lived. My computer turned out not having the capability to talk to the requesting group’s computer. And there were so many motions involved in acquiring that capability.  So back to the old-fashioned telephone interview we settled. Oh but it was not just your every day telephone interview.  The research group gave me intriguing  interview pass code numbers that made me sound important.

On the eve of the Big Interview Day, the research group coordinator gave the high tech webcam idea one last push but to no avail. She couldn’t squeeze an ounce of compatibility from my laptop.  Exasperated, she settled for the telephone interview once and for all.

I dialed the toll-free number ten minutes before the appointed time.  Even with the old phone interview system the research group wanted to ensure there would be no surprise technical issues.  It was also the moment when the interview coordinator asked me to what address should she send the appreciation gift for my participation? I liked that.

I found out I was one of several recent cancer drug clinical trial participants across the U.S. selected for an interview.  The topics covered issues before the trial, during the trial, and after the trial ended.  Since my situation was vastly different from the others in the CO-1686 trial, such as no side effects for four months and generally pleasant outcomes except for the Merformin-induced appetite loss, I could only give glowing remarks about the trial.  I even recalled with gusto that I was flown to Maryland and treated like a diva to speak to the Food and Drug Administration (FDA) committee meeting to root for the approval of Rociletinib, but to no avail.  The interviewer hinted she also wanted to hear adverse comments. I said, Don’t worry.  I won’t hold back if there’s really something I could share.

In the end, she asked what could be done better in a clinical trial?  I answered, It must be clarified to the participant who is paying for what items in the trial. Also, I remembered filling out many forms before and during the course of the trial, but I don’t remember filling out a form before exiting the trial.  I remembered the beginning of the trial but the ending was a blur.  It was not clearly defined.  Would I recommend participation in a clinical trial? Yes, absolutely.  I said knowing what I know now, the moment I’m diagnosed with cancer, I’d ask, Is there a clinical trial for which I might qualify?

And so I made a small contribution hopefully towards the improvement of clinical trials. Would that be a reason for a happy dance?  Let’s do it!

 

 

 

 

 

 

 

 

research

 

A Research Expedition

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Research, Research, Research
Google University has always come through for me over these years that I have been in the blogging universe. I have researched everything intriguing to me, from anemia to Zoster virus. Of course the computer intelligentsia always beats me to it. It pains me to admit that but I am sure of it because every time I type on the search space a phrase, a list of a hundred other ways of expressing my idea pops up. What gets me is their approach is much better than mine.

Well, I got tired of being beaten to the draw by my colleagues so I decided to change my path.  By golly, I’ll be researching lung cancer’s new mutations after T790M from EGFR, I better go where the real research action is: University of California in Irvine or UCI! After all, part of the now defunct clinical trial CO-1686 where in I thrived as a participant for nearly 3 years happened in UCI. There is a library there called, drum roll: UCI LIBRARIES GATEWAY STUDY CENTER (Library).

Okay let me come clean here. The brilliant new idea did not suddenly jump out from the inner folds of my brain. My friend, the string bikini supplier, rammed the concept into my head. I liked it.  Give credit where credit is due.  By the way, where did he get the idea? you ask.  The answer: He is a UCI alumnus.

To get started, he offered the use of his laptop, but my inner sleuth insisted on having her own toy. I asked our genius cohort at the resort pool to order me a laptop from Amazon because as a Prime member, he can buy goods at discounted price and free speedy shipping. It’s nice to have friends in high places.

The bus trip to the Library would be an hour and 45 minutes. We packed snacks and left at 8:00am to beat the heat.  We need to be out of there by noon, my companion declared. I said, What? I had all day in mind. Oh no, he insisted.   You don’t want to be there when 40,000 mostly Asian students are scurrying to go home.  They are ruthless. You’ll get trampled.  Immediately my late mother’s oft-repeated story of our family running away from the Japanese occupiers in the Philippines revisited my head.  So it went that except for one uncle, all my male relatives refused to carry me during the mad dash because I was a fat blob of a baby who refused to stiffen her back and make it easy on the carrier. The first time I heard the story, I kept imagining being trampled by the occupiers had my uncle abandoned me in the name of self-preservation.

The UCI campus during pre-registration day was awesome.  Students in their late teens, mostly dark-haired, bustled around.  A handful should have blond hair based on their appearance but I suspected they had dyed their hair to blend in.  A few mothers accompanied their freshmen babies to help them find their way in the adult world of higher education.  The restaurants boasted inexpensive menus tailored to the student budget.  The clothing stores grabbed my attention!  The beachwear wraps looked hip yet cost much less than those in the malls.  I lost mission research temporarily.

My guide bought two Simpler Times beer at Trader Joes and a bag of Cheetos.  Researcher extraordinaire wanted Cheetos.  We settled on a table at the food court.  We drank from the napkin-camouflaged beer and ate street tacos, my home-made contribution to the expedition.  We watched people as we imbibed and chewed, my companion occasionally addressing a group of freshmen with gusto: Welcome to UCI!   The blissfully optimistic teenagers gladly thanked the self-proclaimed greeter.

With eating and people watching done, we ventured into the library.  After a few minutes of browsing medical literature on the computer,  I saw my guide asking the librarian a question.  When he returned, he gave me a 3″ x 5″ card with a link to a medical research database scrawled on it.

At 3:00pm we were on the bus for our ride back to our homes.  I exclaimed, That was so much fun!  I raved on and on about the exciting observations on the campus.  And then, light dawned.  We had traveled to UCI to do internet research.  I could have done that in the peace and quiet of my minimalist manor and saved me the hassle of fixing street tacos, carrying my roommate the backpack, walking to and from bus stops.  But I had to admit enjoying the disguised beer and Cheetos.  Getting away with something verboten excites the young at heart.   What were you thinking? I asked the ringleader. He answered, Wasn’t it rejuvenating being around starry-eyed hopeful young people for a change?

So true.  The experience seems to have peeled 50 years off my body.  I feel like dancing the Boogaloo.

Now on to the business of going to the link passed on by the UCI librarian.  Feel free to tell me if there is something you’d be interested in knowing while I’m hot on the research tracks.

 

 

 

Revisiting “10,000 Views”

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TO-DATE STATS: Big deal at the moment

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

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

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

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

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

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

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

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

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

Following are the top 5 and why:

No. 5 About Celpeggy

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

No. 4  Cancer Diagnosis is not a Death Sentence

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

No. 3  My CO-1686 Stoke that Appetite!

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

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

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

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

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

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