Dusting Myself Again

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The Author Won’t be Competing in a Speed-Typing Event Anytime Soon

If you’ve been wondering why I hadn’t updated this blog sooner, here is a clue: I’m dusting myself all over again.

What happened was, on the evening of the day after Christmas 2017, I was involved in a traffic accident in a busy Southern Orange County road.  It was a car-versus-pedestrian kind of collision. Yup. I was the pedestrian in that conflict.

I was cautiously crossing the major road, the green light in my favor, when suddenly a formidable object, which turned out to be a Grand Marquis, swiped my back left shoulder and tossed me like a rag doll.  Hey, I’m only a svelte 112-pound senior babe.  I thought, OMG I have been hit!  Next thing I knew I was in a cobra yoga position, raising my bloody face from the hard asphalt pavement, determined to get the culprit’s license plate number in case the accident was a hit-and-run situation.  It happens when the blogger has seen too many True Crime TV stories.  And then it dawned on me:  This is absolutely amazing, quite incredible, and super fortunate.  I have my wits! I live to tell the tale!  I was shocked.

An ambulance ride ensued.  Later the sheriff interviewed the driver, who did not hit and run, a witness, and me.  It became abundantly clear that the accident was a liability issue against the driver.  According to my research later, the insured driver is a US doctor of Middle East origin.  Why can’t I stay away from doctors?

I’d like to tell the story in excruciating detail but it is best to keep my mouth shut while lawyers from both sides are hashing things out.

Thank you for your interest.  I’ll keep you posted.

 

 

Insurance Company Denies Payment

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Not a Pretty Picture!

 

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

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

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

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

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

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

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

(to be continued) 

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

 

HealthWell Foundation Ran Out of Funds (conclusion)

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Okay, so the Onc’s RN said all I needed to do was drop by their office and sign the document and she’d FAX it right back to Astra Zeneca (AZ), manufacturer of Tagrisso. It sounded so easy. But as it turned out, my “drop by” would be fraught with difficulties, most of them my own doing.  Difficulties are good. They sure make my accomplishment seem more epic.

True to my minimalist lifestyle, I have been without vehicle now for 10 months. I’ve mastered the retirement resort community’s bus system. I took my maiden solo 15-minute trip to Laguna Beach using the Orange County Transportation Authority (OCTA) bus and it worked. I found the way back to my manor on the same day! Buoyed by my initial success, I decided to use OCTA to drop by the Onc’s office, which is in another city. The other option was by taxi. The big difference in the cost of the round trip drop-by: $50 by cab vs $1.50 by 24-hour OCTA bus pass.  I could definitely use the savings to buy me a new string bikini swimsuit.  Priorities, priorities.

I planned the trip.  Actually the OCTA website did the planning complete with maps and instructions.  I packed cut-up apples, cashews, and cheese cubes for snack in case my blood glucose ran low while I was in the middle of nowhere. And of course water. All set with my roommate the backpack carrying the goodies, off we went to the expedition.

It seemed like I was hopelessly lost. I did a lot – and I mean A LOT – of walking to correct my navigation errors.  Finally I made it to the Onc’s office, signed the paper, and headed for the bus to go home. Got lost some more. If I straightened out the path that I had walked, I probably would have reached Canada. But it was so worth the experience and the mission accomplished.  Always in awe of the bright side – that’s me.

The following day, AZ phoned and let me know the application FAXed from my Onc’s office was incomplete. Oh no! Over the phone she and I completed it. The next day, she phoned me again this time for the good news: I am officially in the co-pay assistance program: no need to wait for the IRS document, no need to file my application, no need to call for my refills which AZ – not the specialty pharmacy – will ship directly.  How awesome is that! As I wrote this post, I had exactly 5 Tagrisso pills left. The shipment was supposed to arrive any day.

Saved by the bell!

Please feel free to share your drug co-pay story, if you have any.

 

 

 

 

 

My CO-1686: Something Old, Something New

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

10,000 Views

Congratulations to this blog! In this post the 10,000th view will occur, according to the statistics! Imagine that. And congratulations to its followers. Your views belong in that historic number.

I discovered the statistics or “stats” page of this blog one day when I became curious about the freebies that WordPress gives its bloggers. One of them is the stats page, which only the blogger and WordPress can access. The stats page shows the number of views in a 24-hour period broken down by country, the posts being viewed, and how the viewers found it. Interesting! Don’t ask me how the data got there. All I know is that I am a freebie kind of blogger!

The statistics “10,000 views” is peanuts for long-time bloggers and for new ones who have been extremely successful in a short time. Getting the 10,000th view is a milestone for a blog whether it happens in one month or at the end of the millenium.

Ten thousand is ten thousand in any language. It’s an awesome number. To get a sense of its magnitude, imagine 10,000 dollars; 10,000 bee stings; 10,000 virgins; 10,000 nodules. Dig? Okay, dug. Now we agree the 10,000th view of a blog is a milestone to reckon.

My blog site is austere, if you haven’t noticed it. It has no colorful photos, not even of me and my new CO-1686/Metformin svelte figure! The site only contains catchy titles and words of wisdom straight from the heart, shot from the hip. Working it is my kind of fun and hopefully I’m sharing useful information and sparkle dust along the way.

As I mentioned in a previous post https://celpeggy.wordpress.com/2014/06/06/the-fluky-co-1686-hawker/ I started blogging just to update close family members and friends on how I’m doing in the CO-1686 clinical trials. When any of them asked me “How are you doing on the trials?” I’d tell them “Read my blog.” In other words, my originally intended audience was under duress to read each and every one of my posts! Success through intimidation.

Surprisingly, I received supportive comments from folks outside of the intimidated inner circle. The encouragements came from cancer patients and caregivers who had followed my routine when I was volunteer Head Diva at TARCEVA DIVAS AND DUDES. They said, to the effect “Keep blogging. We’re enjoying it.” In particular, someone emailed me, “Love, love that biopsy story!” https://celpeggy.wordpress.com/2014/08/05/my-co-1686-trials-a-flashback-then-fast-forward/
My kind of reader…we have a match!

As it turned out many people from around the world share a common interest in this blog as evidenced by the stats. The majority, about 70%, of the viewers are from the United States, followed by Australia, United Kingdom, Canada, and India. The other sprinkling of viewers come from over 60, yes six-oh, other countries.

I think viewers go to this blog because (a) There are Tarcevans and CO-1686 clinical trials inside and outside the United States. Viewers want first-hand information; (b) Cancer is an equal opportunity disease regardless of geographical location. Viewers look for support; and (c) Humor and laughter are universal. Viewers want or need a little distraction.

I must confess, being an engineer to the bone, I became a “stats junkie” in the beginning. I was constantly checking on the stats, very curious who are these viewers, when and whence they come. I’d post and my eyes would glisten with delight at the immediate spike of views on the chart afterwards. I’d try to figure out how many people are interested in CO-1686, how many for the other topics, how many are for cancer, how many are for a chuckle, how many are just plain nosy. After each post, I’d see, for example, “Botswana 1” or “Trinidad and Tobago 1” and I’d wonder, could it be the same person every time, or a new one each time? When I was awakened at the wee hour of the morning, I’d look at who’s looking at the blog. It was like peeking through a telescope and finding a stranger with a telescope peeking at me! Then one midnight, as I was reaching for my smartphone to check on the stats, I said, meh! Who cares? I got over it.

With the 10,000th view, I feel like celebrating big time. I thought of buying a tutu skirt at a thrift shop, investing on a “10,000 VIEWS” poster, standing tutu-clad at the corner of Healthy and Happy, and waving frantically at anybody who makes eye contact. I decided against it. I thought I’d just take this opportunity to thank the readers of this blog. It’s the decent thing to do and the price is right.

So here I go: Thank you, dear friends, relatives, readers, and followers, whoever and wherever you are, for making me feel that I’m doing something positive and productive. I give special thanks to those who have taken time to comment on some of the posts.

Say something. I’d really appreciate it. But I understand. Some people prefer to remain closet blog followers. 🙂 I respect that.

Next post: My CO-1686 From the West Coast!