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.
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.
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.
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.
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.
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?
The SECOND payment denial by the Insurance Company (IC) hovered like a dark cloud over my head. The new 60-day appeal filing period had just begun and the sense of urgency had not yet grabbed my attention. If the dark cloud meant rain, I felt like I could do a hippy hippy shake speed walk and still have time to find me an awning that would save me from being drenched. Of course I did not know how much money I was supposed to spring if I eventually lost the appeal. Maybe if I knew, I’d be flying! But paying for something that I shouldn’t is not an option. Failure to prevail is not an option.
Two weeks passed and I decided I had lived dangerously long enough. It was time to rattle Dr Brevity’s RN. I went on a messaging spree with the RN through the Patient’s Portal. Okay, that’s grossly exaggerated. I fired exactly 2 messages in a row over a span of 2 days. Exaggeration happens when the Patient/Blogger suddenly forgets her coolness and magnifies everything.
My first message read: I received IC’s Notice of SECOND denial of payment based on the information provided by you. I agree with you that your submittal was responsive to IC’s requirement to reverse the denial. Now the new and improved reason for denial was “When you enrolled in a Medicare Advantage Plan, you selected a Primary Care Physician to coordinate/authorize your medical care. The services received were not authorized and not payable by Monarch.” Please continue to represent me to Monarch.
I did not receive a response. I sent another message.
My second message read: Please let me know what action you intend to take. IC gave me another 60 days to appeal the SECOND denial. I don’t want to lose that opportunity.
I still did not receive a response. The following day, I gave up being Ms Nice Guy. I reached for the phone. After all sorts of mysterious phone connection motions at Club Med, RN and I finally found our voices.
RN: Celia what do you need?
Me: Did you get my messages at the Patient’s Portal?
RN: No I did not.
Me: The long and short is, I got a Notice of SECOND denial of payment. All I want to know is if your office intends to continue to represent me.
RN: We already gave IC what they needed.
Me: In other words, your office is through helping me.
RN: There’s nothing more we can do, but I can call Guardant and ask for Patient Claim Assistance.
While we were talking, she found my messages. She did not see them because she had not turned on her computer since her return from vacation.
Anyway, I thanked her for everything she had done to help me and proceeded to call the number that Guardant gave me if I needed help in filing the claim. The phone rang.
Voice on the other end: How can I help you?
Me: Please connect me to Client Services.
Voice: This is Client Services.
Me: Oh, you are Client Services. My contagious laughter roared.
Voice: (Laughing, from contamination). Yes I am.
Me: I need help to file a claim.
She asked for identification, date of birth, yada yada.
Voice: OK I found your case file. We received the same Notice that you received. I’m glad you called. But first I want you to know that win or lose the appeal, there is a fixed fee you must pay.
I felt my hackles kind of lift from the back of my neck.
Me: How much?
Voice: 60 dollars
Me: Come again please. I want to be sure you did not say 6K dollars.
Voice: 60 dollars
I laughed. And she laughed.
The appeal is supposed to be a lengthy process. I hope everybody lives long enough to see the end of it.
(to be continued)
Is there any experience out there like this? I’d appreciate input.