The Colonoscopy

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The Colon: Everybody Has One

In a span of six months I saw two gastroenterologists (GE).  Nothing was wrong with me.  I had no symptoms.  It was just that my doctors kept referring me to other doctors and I did not argue because I’m retired.  I need to supplement my recreational activities with educational ones.

My oncologist (Onc) referred me to the first GE, whom I never met.  His registered nurse interviewed me and concluded that nothing should be done to me but her boss the GE always made the final decision on the matter.  Sure enough he said nothing should be done to me.  Onc was happy but my Primary Care Physician (PCP) was not. He referred me to the second GE and told me for the nth time me I should get a colonoscopy because of my cancer history.  I finally caved in and agreed.

So off to GE#2 I shuffled.  My insurance company gladly notified me of their approval of PCP’s request: a 30-minute face-to-face interview between GE#2 and me.

GE#2 is another one of those young, suntanned and handsome Southern Orange County physicians to whom I’ve grown accustomed.  He definitely descended from one of the failed Hollywood star wannabes of Bugsy’s era.

He had 30 minutes so he went straight to business and asked me what symptoms I had that brought me to him. I told the truth: no symptoms. He gave me two options. Option number 1 screening, which is usually given to people with no symptoms. It would require checking of the stool by PCP through lab test results. Option number 2 diagnostic colonoscopy entails him sending a camera through the rear-end orifice and analyzing every nook and cranny of my large intestine, also called the colon. A camera? I asked, with feigned terror in my eyes. How big is this camera you’re talking about? He chuckled and clarified: It’s tiny and you’ll be under anesthesia.  You will not know what’s happening and it will take only about 45 minutes. I’ll look for polyps or cancer signs. If I see polyps, I’ll remove them there and then. I said, I have no symptoms, I’ll take Option 1. What happens next? His response: Your PCP will just keep telling you to have Colonoscopy.

I decided to cut out the PCP agony and go for the colonoscopy experience or Option 2.

GE#2’s battery of assistants went to work.  The tech scheduled a date for my colonoscopy procedure to be performed as an outpatient in a facility where mostly elderly men and women allow the gastroenterologist surgeon  to insert this tiny camera in the rear end for a scenic tour of the large intestine.  It would be like a small train entering a dark tunnel that has 4 bends, each one almost 90 degrees, forming an open square. The camera takes photographs at points chosen by GE. But first, the patient’s large intestine must go through a thorough cleansing to get rid of any caca that might block the camera and a clear view of whatever adorns the innards.

The nurse gave me a page long of must-do things: buy 32-oz bottle of gatorade and a bottle of a laxative; mix the two fluids; take three laxative tablets two different times; drink the gatorade mixture along with a liquid diet at certain times all day before the day of the procedure and hours just before the actual colonoscopy.

All told, I dedicated 3 days of my leisurely life for the project.  Day 1 for shopping, Day 2 for cleansing, Day 3 for the colonoscopy.  Retirement is awesome.  It allows time for this kind of experience.  I was not even thinking of results, bad or good.

Day 2 was the toughest, definitely not a time to visit Disneyland. I had to stay home, prepared to plant myself on the commode at all times.  Laxative overload owned me!

Day 3 proved to be anti-climactic.  I was told to lie down sideways on the gurney and relax.  A nurse installed an Intra-Vein line in front of my elbow and inserted an oxygen thingy in my nose.  Next thing I knew I was waking up.  Okay!  Chop, chop.  I joyfully exclaimed.  Are we ever going to start the colonoscopy?  The head nurse responded, All done.  You’ve been asleep for 2-1/2 hours.  I was stunned.  I had no pain anywhere, no bleeding, no discomfort, nothing.  Whoa! I could have dropped dead and entered the pearly gates without any knowledge of colonoscopy.  I missed out on the event totally.

Everything went well, the handsome devil Dr GE#2 assured me and handed me a sheet of photographs of certain scenic spots inside my large intestine.  I studied each ghastly image with mixed disgust and curiosity.  They looked kind of gross, really, but the pictures of the inside of my colon brought good news: no polyps, no cancer signs.

The clinic’s post-colonoscopy written instructions were pretty serious: No walking home, no bus, no taxi.  Someone must drive the patient home and the driver must be physically presented during the check in otherwise the procedure will be cancelled.  Good for them but I had my own agenda.  I convinced a male friend to accompany me and pretend to be my driver.  I wanted to go home by myself.

After an hour of my coming to, the staff noticed that no one with car keys had arrived  for me.  They became suspicious.  They wheeled me to a corner of the recovery room and held me hostage.  No car, no release.   While buying time for the anesthesia to wear off,  I stared at the door and the exit sign.  They beckoned me.  But the nurses could read the glitter of excitement of escape in my eyes.  They took turns talking to me, still hoping someone would show up with car keys.  Finally, they gave up.  The head nurse instructed a young man to drive me home and walk me to the door of my manor.

Don’t we just love happy endings?  Happy dance, senior string-bikini babe!

 

 

 

 

 

 

 

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The Podiatrist

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The Podiatrist’s Domain: Feet and Ankles

I was scheduled to meet with Dr Paa, the podiatrist to whom my Primary Care Physician (PCP) referred me concerning my bunion problem, therefore I thought I should know more about a podiatrist.  The notion reminded me of an old friend of mine who had contracted polio when she was a little girl.  All her life she walked with a limp and saw a podiatrist a lot.  She told me the foot reigned supreme at her podiatrist’s office. The door mat design featured a pair of feet. Footstep silhouettes led her to the consultation room where pictures of feet and diagrams of  the foot skeleton hung on the walls. Thus the relationship between feet and podiatrist stick in my head.  But for this post, I wanted an accurate definition of podiatrist, so off to my alma mater Google University I shuffled.

According to my colleague Dr Google, a podiatrist is also known as podiatric physician. He or she is a medical professional devoted to the study and medical treatment of disorders of the foot, ankle, and lower extremity. Lower extremity as in toes?  What about the knee, I asked.  Is that too high for the good doctor? Dr G replied, Knee pain can be examined by PCP. If it requires surgery, he could refer the patient to an Orthopedic Surgeon.  For knee pain due to arthritis, gout, inflammation, a Rheumatologist is the doctor. OMG! My head spun with information overload.  All I wanted was a yes or a no.

According to unfounded rumors and my undoubtedly unreliable sources, 60% of podiatrists are foot fetishists. Foot fetishism is foot worship or podophilia and is more prevalent in men than in women. Just in case there is a scintilla of truth in the statistics, I scrubbed my toes immaculately before the trip to the podiatrist’s office.

Travelling by bus to Dr Paa’s office for the first time presented obstacles – like getting in the wrong bus and estimating wrong travel time – that caused me to miss the first appointment. Fortunately, I made the re-scheduled appointment in plenty of time and avoided being banned for life in that podiatrist’s office.

From the foot of a small hill, I could see above Dr Paa’s big office sign “Podiatry.” So near yet so far. The problem was the site layout had been designed for vehicle traffic.  The busy uphill driveway had no sidewalk.  I went to the block’s intersecting driveway and still saw no sidewalk.  What were those engineers, planners, and architects thinking? Did they not consider that I might move to California one day for bunion consultation?  I didn’t feel like walking to the other side of the commercial block to find a sidewalk so I did what any red-blooded fearless warrior would do: I slogged across the sloped landscaped embankment straight to Dr Paa’s Podiatry office.  Fortunately no pyracanthas or other thorny bushes got in the way of my trek.  No problemo.

It was a morning appointment. A wheelchair and an assortment of walkers and canes and as many number of people of various ages and sizes already filled the reception room when I arrived. No one cracked a smile for me.  I kept my peace.

At the appointed moment, a 20-something sparkle-dust podiatry technician, the only happy face in the place so far, tried to lead me to the examination room.  I liked her. She was game. Follow me, she instructed me smiling. I did not follow her.  Instead I walked in front of her and said, Follow me, walk this way and I did my hippy-hippy shake sashay. She unloaded a bombastic contagious laugh. The fun began.

Sparkledust took my weight and asked me my height.  I gave her feet and inches an inch taller than me.  How would she know? If it really mattered, she would have measured my height herself.  She walked out and Dr Paa strode in.

Dr Paa’s fictitious name means feet in the Philippine national language.  A Caucasian of eastern European descent, his real surname contains so many letters and is hard to spell. Tall and bulky with a slight beer belly – my kind of guy – he went straight to the point: How long have you had this bunion problem?  His fingers caressed my bunion gently. I wondered if my foot fetish fact source might be reliable this time. I replied, Thirteen years. He asked, And you were in pain all these years?  I answered:  No, I only had pain when I tried on tight shoes, which I eventually did not wear.

The rest of the exchange went like this:

He: What brought you here then?

Me: My PCP pressured me to complain about what could be wrong with me during my annual physical and my bunion came to mind. The bunion gives me no pain but it is not pretty.  He gladly referred me to you.  I thought maybe you know some new technology that deals with bunions.

He:  Unfortunately there is no magic. But I can do something for you.

The foot fetish rumor launched my mind on overdrive.

From a drawer he took out what looked like an electric eraser and used it to file my bunion-induced callouses.

Me:  I bought a pumice stone and did the same thing you’re doing.

He:  Pumice works but you should not scrape too much. These callouses will return.  The wider the bunion gets, the more the callouses build up.

In less than half a minute Dr Paa was done.

He:  Here’s what I can do for you.  Next time the callouses grow back, don’t remove them yourself.  I’ll do it for you.

Me: Really!

The foot fetish rumor tickled my imagination again.  My beady eyes widened.

He:  And you don’t have to come here.  Every Wednesday and Friday I hold office in your PCP’s office.

Me:  Ah..You guys are in cahoots!

Dr Paa apparently appreciated irreverence. He chortled.

He:  And you don’t have to worry about anything.  Medicare pays for it.

Me:  I like it!  No bus travel and the price is right.

We laughed.

Dr Paa left and Sparkledust entered the room with the oxygen-measuring gadget.  She clipped it around my left big toe, then the right big toe, then the left index finger, and finally the right index finger.

She:  Circulation is good.

Me:  Awesome.

With that, the podiatry session ended.  The secretary gave me a future morning appointment and sent me on my way.

I schlepped my bunion down the landscaped embankment, silly smile plastered across my face.  Contrary to PCP’s belief, there’d be no need to change my shoes or my foot.  And that’s good.

Do you have a podiatry story? Let’s hear it.

 

 

The Opthalmologist

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The Eyes Have It Today

This post brought back memories of my early days in America, soon after falling off the boat as a bright-eyed and bushy-tailed  young legal immigrant.

Tom, a Caucasian man who would become my husband and much later make me a widow the first time, drove himself and me to Visalia, CA and introduced me to my future sister-law, Trish.  A beautiful woman inside and out, mid-to-late 20’s like me, she was married and had two adorable toddlers. The two-year-old girl had blond curls and inquisitive exquisite big blue eyes that kept staring at me.  Noticing cutie pie’s behavior, mother admonished daughter. Tamara, it’s not polite to stare at people. Then Trish turned to me and apologized, Tammy has never seen an Asian person before.  But the toddler disobeyed the order.  She followed me around the house,  her eyes intensely focused on mine, irritating the heck out of me. Don’t get me wrong. I like kids. In their own room.

Evening came and everybody hit the sack.  At crack of dawn, tiny blondie made a mad dash to our bedroom.  Again she drilled her blue eyes on my face.  Finally she exclaimed with disappointment, Your eyes still look tired! Tom and I laughed. A good night’s sleep couldn’t fix my hooded eyes!

Now to the ophthalmologist to whom my primary care physician referred me.  But first, I consulted Dr Google.  He confirmed that an opthalmologist is a doctor in the branch of medicine concerned with the study and treatment of disorders and diseases of the eye.  Actually the appointment was for my annual check up.

I arrived at the clinic at 2:30pm filled with trepidation because for nearly three years, the ill-fated CO-1686 clinical trial had handed me drug-induced diabetes while fighting my lung cancer.  During my research, I read that diabetes can wreak havoc in every cell of the body, which definitely includes the eyes. Of course immediately after bailing from the trial, the diabetes disappeared.  Poof! just like that. In the two weeks prior to my opthalmologist appointment, my eyes had been feeling weird, a perfect reason to blame. cancer and diabetes.

A 40ish bubbly woman eye-care tech ushered me to a seat in front of a machine.  I heard clicking sounds as if she was taking pictures of my eyes.  Then she led me to the reading examination room.  Put your chin here, your forehead here.  I obeyed. She asked me to read the row of smallest letters that I could read. I read the bottom row flawlessly. Hmm..20/20, she muttered.  I responded, The cataract surgery results at work. After squirting pressure drops in my eyeballs, she suggested I walk to the reception room and wait for the ophthalmologist’s call.

After half an hour, a male voice called my name.  It was the good doctor.  A Caucasian man in his 50’s with a long last name that ended in “ggold” he had this air of being extremely busy.  No smile, no friendly banter, guard up, his eyes focused on my charts. This was one eye doctor who avoided eye contact.  I kept trying to intercept his line of sight but to no avail. The experience reminded me of an advice given to me on how to prevent a friendly dog from jumping on my lap: no eye contact.  Dr Personality (Dr P) must have feared I’d strike a long drawn-out conversation with him, push back the next patient and delay his going home. He certainly did not appear to be the beer-and-nachos kind of dude.

Then Dr P brandished what looked like a magnifying glass/flashlight and directed it to my eyes. He instructed me to rotate my eyeballs 360 degrees: to the left straight, to the left high, to the ceiling, to the right straight, etc. Sometimes my eyes got confused which way was right or left so he repeated the instruction a tad irritated. He asked me when I first noticed the stye-like bump on my lower right eyelid. I answered, Before grade school and my mother convinced me it was a beauty mark. As I grew bigger and older, it also grew bigger and older and every eye doctor suggested removing it. So much for beauty mark.  My tale of woe failed to get a rise out of Dr P.  He quickly followed up with a question, Do you feel like blinking  eyes often because  they felt weird?  And I thought, Oh no, here’s the disease caused by the drug-induced diabetes! I answered Yes, I’ve been doing that lately.  Dry eyes, he declared with authority. Take fish oil. It’s good for the eyes. I argued: I eat a lot of fish.  I was hoping he’d give me some static. But no. He quickly agreed that lots of fish in the diet would suffice.  He declared there was nothing wrong with my eyes.   His subsequent demeanor indicated in no uncertain terms it was time for me to skedaddle.

In light of the foregoing, I resolve that next time I’ll only take morning appointment when the doctor is still enjoying his work.  I’m not complaining.  Good news is good.

Would you agree that morning doctor appointments are better?

Revisiting Tarceva Divas & Dudes

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Looking Back

What a difference 3.5 years make for Tarceva users! I was cataloguing my blog posts, carefully reading each of them, and searching for timeless information beneficial to new Tarceva users when one particular post stood out.  It’s in the Tarceva Divas and Dudes blog.  The update post title was Tarceva Divas and Dudes 03/28/2014 (The Update).

The Update stood out because:

(a) It reflected the evolution of Tarceva users. I noticed that in 3.5 years, many users have moved on to other treatments, some have abandoned Tarceva in favor of clinical trials or approved clinical trial drugs, and a few moved on for good.  Moving on for good is  something all of us – with or without cancer – will do sooner or later, preferably later, because that’s what we finite beings do.

(b) It generated 125 comments, making the thread 7 pages long. A few comments even took on lives of their own.

(c) It was chock full of relevant information, including a first-hand blow-by-blow account of a biopsy and answers to often-asked questions like Why go on a clinical trial, What time do you take your Tarceva?

(d) It reflected the history of the Tarceva Divas and Dudes blog.

(e) It shows how the author evolved into an awesome amazing woman.  Ooops, sorry!  I just had this crying need to throw that in the mix.

And now to the If’s:

  1. If you want to walk down memory lane, or learn something new, or just want to have a chuckle for whatever reason, here is the link:https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/tarceva-divas-and-dudes-03-28-2014/
  2. If the link doesn’t work, and you are really into it, please cut and paste the link on your browser.  Or if you are a member of Inspire.com, search Tarceva Divas and Dudes 03-28-2014 on the site.
  3. If you make it to the site and you recognize yourself, please tell us where you and/or your loved one are in your cancer journey.  Only if you want!

Okidoke? Thank you.

 

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!

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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!

 

 

 

 

 

 

 

 

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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.