My Fifth Cancerversary

I never dreamt of writing a post about my Fifth Cancerversary. Never dreamt of writing about anything – period – five years after my 2012 Stage 4 lung cancer diagnosis in which an oncologist gave me 8 months to live without treatment, 11 months to a year with treatment.  So on the first minute of the first day of this June, my cancerversary month, I fantasized about backhanding that onc across the jaw if he were still alive. He absolutely had no business telling me or anyone with cancer about expiration date. Fortunately, wholesome productive thoughts stopped my fantasy of vindictivess dead on its tracks.

Most people reckon their cancerversary dates from the date of diagnosis.  Not me.  I am  non-conformist extraordinaire.  I had established my cancerversary month – notice month not day – based on the month my cancer journey began.  It was June 2012.  I remember it very vividly.  I had a cough that did not seem to quit.  I blamed LA’s smog, the airborne dust caused by landscape men constantly turning the soil in the retirement resort, the red grease floating in the bowl of Mexican menudo.  As fate would have it, in late May of 2012, a judge in Albuquerque summoned me to show up for jury duty, or else.  I had no choice but to tuck my tail and comply with the judge’s order.  Something about the “Or Else” stuff from a judge that sends me on flight mode every time.

First thing this June 1st, ideas whirred in my head.  What does Fifth Cancerversary  mean to me?  It means beating the odds and the thunderous call for celebration! Being a self-proclaimed hedonist (“Hedonista”), I immediately considered throwing a bacchanalian party to celebrate life. I’d rent a place, invite family, friends, fans and followers and we’d all gorge ourselves on oysters on the half shell, crab legs, prime rib, rack of lamb, potatoes, pastas and salads of all sorts.  And of course desserts.  I’d hire a DJ to play music, rock the place, and work off the gluttons’ calories.

But my Inner Altruist (“Altruista”) intervened.  A heated discussion transpired between Altruista and Hedonista.  Haven’t you heard of “a cause greater than yourself?” asked Altruista, contempt dripping from her voice.  Hedonista raised her eyebrows and broke into laughter. Greater than me?  There’s no such thing!

Altruista persevered.  She changed her demeanor from contemptuous to sympathetic.  She knew she was dealing with a drama queen.  Altruista explained to Hedonista that second chances go to people who pay forward and help others.  Hedonista interjected, I thought I was already doing that with my blog! One famous blogger told me that my blog is my purpose.  Altruista went farther to penetrate Hedonista’s dense head.  Finally Hedonista saw the light.  Her eyes widened.  Got it! she exclaimed: You want me to pursue a life of “blogging plus.”  Altruista clapped her hands and did a happy dance. I’d been transformed!

That transformation made me feel good, so good that I felt like bursting into a karaoke.  I even thought of paying my income tax early.  Then it dawned on me: I need  specifics.  I asked Altruista, What would consist “blogging plus?”   She answered, First, yank yourself out of retirement and go back to employment. The word “employment” threw me a mental block so hard that my train of do-good thoughts came to a screeching halt.

I moseyed on back to my last blog post, the one covering the CT Scan Report, the one to which many followers can relate.  I re-read their comments on the post on Inspire.com and the social media.  One faithful reader, also a cancer survivor, even sent me a private email and her message stood out.  She wrote, “…….I was so discouraged Friday evening and then I started reading your blog posts and the cloud went away.  You are an absolute delight and a tonic to all of us in this cancer journey. I can’t tell you how much I appreciated your bright outlook and good humor….” 

Whoa! Had I remembered that someone would reassure me in writing that I am already doing an awesome job of serving my purpose, I would have not involved two of my multiple personalities in figuring out the contents for my Fifth Cancerversary in my blog update.

In conclusion, on this my Fifth Cancerversary,  I thank every cancer patient, survivor, caregiver, their relatives and friends who read my blog and validate my service in words or in thought.

 

     

 

  

The CT Scan Report

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Is this for real? Please, somebody, pinch me!

Hah! I get to use that opening after all.

May 5, 2017 CT Scan Day 11:30 a.m.

Being with the One-Man-Band Onc also known as Team Smiley, I did not know exactly what to expect.  But with all my CT Scan experience at 4 university hospitals, I figured, there would be the 4-hour fast before the CT Scan procedure, which normally takes 5 to 8 minutes.  I had been told to report at the hospital at 9:30 a.m. for processing.  I surmised if the CT Scan started at 11:30 a.m. I should be out of the hospital by 11:45 a.m.

Surprise!  Right after completing the insurance paperwork at 10:45 a.m., a twentysomething female nurse assistant escorted me to the Radiology department.  A male technician, 30’s, in hospital blues, led me to a tiny room separated from the rest of the world by a colorful curtain and handed me two bottles of barium berry-flavored drink. He said, Start drinking the first bottle at 11:00 a.m. Drink it over a 30-minute period, which means ending the drinking at 11:30.  Take a 30-minute break, then start the second bottle. Drink it slowly for 30 minutes, or until 12:00 noon.

I did everything according to the instructions.  After drinking all the berry-flavored yuck, I went outside the curtain to turn over the empty bottles and hopefully get started with the CT Scan. There was not one soul in the room.  I had been abandoned!  With the two empty bottles in my hands, I paced the floor frantically, like a wino needing her fix badly. Finally, a tall Anglo man, wearing a hospital mask, entered the room.  He asked, Can I help you?  I answered, What do I do with these empty bottles? I’m done and ready for the CT Scan.  He said, Put them in the trash can.  I asked how about the scan? He replied, Someone will get you.  Sure enough at 12:30 p.m., the technician in hospital blues reappeared.  He led me to the CT scan room and worked the CT Scan machine.

CT Scan is CT Scan in any hospital.  I have already memorized the instructions: Take a normal breath, hold……….Carry on with your breathing.  I am always happy to hear that I have the permission to breathe again.

May 8, 2017  Result Day 

Dr Smiley’s Registered Nurse left a message on my smartphone, giving the result of the CT Scan, and telling me to call her if I had any questions.  I returned her call. At first, she could not remember who I was because she had made many calls to various patients.  I asked her questions to which her answers were, I don’t know.  Finally I asked her, Is the information in the Patient’s Portal? Her answer: I don’t know.

The information is in fact in the Patient’s Portal. Here it goes:

The latest CT Scan images were compared to those of  January 2017, done at UCI.

Lungs: Overall improved relative to the January 2017 images. The main pulmonary nodule, the “flying saucer” at the lower left lobe, was 4 mm x 9 mm, reduced from 7 mm x 25 mm.  No new or enlarging nodules.

Tagrisso came through for the Tagrisso Tiger! That’s the new title given to me by a fan.

Innards:  Mild intrahepatic biliary dilation with prominent common bile duct dilation Stable. No evidence of metastatic lesions.  Liver function tests are slightly elevated. Normal bilirubin.

I remember having that intrahepatic biliary dilation when I was in the CO-1686 trial. It resolved. Here it is  https://celpeggy.wordpress.com/2015/02/02/my-co-1686-ctscan-report-says-nothing-grew-something-new/  If the link does not work, it’s in the February 2015 post in the archive.

Dr Smiley wrote that he will request the insurance company to get an MRI of the liver anyway, regardless of the radiologist’s statement of No evidence of metastatic lesions.  Isn’t he sweet!

There was no mention of the occupier of the adrenal.  It must have resolved.

That’s it.  No After-CT-Scan consultation with Dr Smiley.  It’s kind of different from what I’m used to.

Go Tagrisso!

 

 

 

 

 

 

 

 

 

 

One-Man-Band Onc

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Is this real? Pinch me, please!

I was hoping that would be the dramatic opening salvo of this post.  But noooo! The CTscan and blood tests have not yet happened at this point.

The confusion on the day of the Onc appointment started when I received a phone call from my insurance company.  Since my smartphone is always on “mute” I never heard the call.  I had to listen to a recorded  message.  A woman’s voice said she is from my insurance company and is happy to share a news about the approval of the authorization of a requested procedure.  I was perturbed.  I was unaware of any request for a procedure, a word that sends me shaking in my toe socks.  I have always associated the word procedure with surgery, chemo, or radiation.  I returned the call.  After a few minutes of saying yes or no to a computer voice, I gave up.

So to the one-man-band Onc’s office I shuffled for my appointment.  I thought the good doctor was going to direct me to a laboratory for blood draw then to a radiologist for CT scan.  But nooooo!  A young male technician checked my blood pressure, weight, temperature, and oxygen.  Everything was good, including oxygen which was 99!  He then directed me to sit at a certain chair and wait for the Onc, who joined me shortly.

The Onc, a middle-aged Anglo male, had been born with a smile permanently plastered on his face.  His closed mouth forms a line of thin lips like the “smile” emoticon.  When he asked me, How are you doing? I caught myself smiling at the smiling face.  Then he asked if there was any change in my health.  I answered, Nothing has changed.  I still have lung cancer. And of course, the questions Any shortness of breath, coughs, fatigue, and other symptoms followed. I said the only changes I notice are my bushier eyebrows and slightly longer eyelashes. Those are good ones for you, he said. I smiled and froze my face in smile mode to  match his for the duration. He added, It seems like Tagrisso is working for you.  I would hope so, I responded.  He countered, the CT scan will tell us the whole story.  I said, I thought that’s what we’re going to do today.  What happened?  He said, I’m going to write the request for blood tests and CTscan today.  The consultation ended with the stethoscope motions to listen to my heart and lungs, sounds of which, he said, were good.  He dug his fingers on the area around my throat, obviously looking for swollen lymph nodes, which he did not find.  I must mention Dr Smiley’s warm hands that brought back memories of my favorite gynecologists of yesteryears.  Dr Smiley pressed hard on my belly, perhaps expecting me to scream if there was pain. There was none.

What was that consultation about? It sure seemed unnecessary to me.  I wondered, What if I had gone in there with a hacking cough, complaining about pain, shortness of breath, etc.  Would he have not ordered blood tests and CTscan anymore? Would he have simply recommended hospice? Or maybe it was important for him to see me in person to make sure I was still breathing.  After all, it had been three months since our last consultation.  But couldn’t a phone call have taken care of it?

The following day, I visited the Patient’s Portal and read Dr Smiley’s entry about the consultation, as follows:

Female, NEVER SMOKER, lung cancer, Stage IV, EGFR 19 mutation, T790M mutation. She was originally diagnosed in 2012 with her only biopsy.  The report shows adenocarcinoma with the EGFR exon mutation and T790M mutation also. She received Tarceva daily at various doses between 2012 and October 2014 with change over to clinical trial “Clovis Study” with eventual progression of disease in January 2017. She started on Tagrisso 80mg daily on 1/18/2017. She is doing well and asymptomatic without any physical exam findings of concern.  I will check labs at this juncture and repeat CTscan imaging with an attempt for comparison to January 2017 CT scans.  If stable, I will see her back in 3 to 4 months.

The paragraph left much to be desired.  The Onc’s description of the female could have been more picturesque.   The words “gorgeous” and “bubbly” could have helped him to humanize the cancer patient.

As I was writing this post, a radiology office left a message in my smartphone.  A male voice said that Dr Smiley had ordered a CT scan and the radiology office would like to schedule the appointment.  It became clear: It was the approved authorized procedure about which the insurance company had called me earlier!

The blood tests and CT scan have now been clearly scheduled.  Anticipating the results starts all over again.

 

 

 

First Three Months on Tagrisso

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Happening soon! I am talking about the upcoming CT Scan and blood tests this month after my first 90 days of taking 80 mg of Tagrisso once daily.  I had been popping the pills religiously at 6:00 every night except for one evening when I completely forgot all about it.  What happened was, three Foodies picked me up at 4:30p.m. for a 5:00p.m. seafood dinner at Bonefish Grill. Six o’clock simply got lost in the hoopla.  It happens when a mug filled with an awesome designer draft beer and a heaping plate of bang-bang shrimp are strategically placed in front of my eyeballs.  It was not until midnight that the missed Tagrisso dawned on me.  I decided then and there that the occasion had risen to switch Tagrisso-taking time to the crack of dawn, as in 6:00a.m. and get it out of the way for the day.  It does work much better.

Tagrisso continues to give me zero nasty side effects:  no upset stomach, no shortness of breath, no fatigue, no diarrhea, no constipation, no rashes, no dry skin, no pain, no swelling of anything. Nothing.  I get additional bronzing and Vitamin D directly from the California morning sun without adversarial effect.  I keep a vigil on my eyebrows to catch any signs of bushiness. I scrutinize my eyelashes daily for indications of becoming mutants. As a matter of fact, I have noticed changes.  My eyebrows have developed a new growth pattern.  The outer ends curve upwards like handlebars.  And the hairs are coming out long and white or gray.  I have become the female Mr Clean! I’ve trimmed them and plucked the wayward hairs once already.  I don’t blame Tagrisso for the graying.  After all I am waaay past the age of innocence.  My lashes that Tarceva left stubby have been growing back darker and longer, making the eyes more soulful and fraught with the come-hither look.  This development is getting me all stoked!

I’m truly curious what the upcoming CT scans will reveal.  Is the adrenal occupier still on its perch? Then there’s the Flying Saucer at the bottom of my left lung – the portion of the tumor that Tarceva did not wipe out but Rociletinib kept at bay for nearly three years.  Did it grow bigger, get smaller, or stay the same? What happened to the Milky Way in both lungs? Are the mysterious tiny nodules still too many to count? What are they, anyway? This is exciting!

This upcoming CT Scan would be my first outside the university environment. Since my cancer diagnosis in 2012, all my cancer treatments, tests, and scans had been in a succession of four teaching hospitals: University of New Mexico, University of Colorado, University of California in Santa Monica, and University of California in Irvine.  Now I am with a one-man-band Onc in Southern Orange County.  Ta ta to stardom or diva-hood in a one-man-band atmosphere.

Since dropping Rociletinib, the CO-1686 drug, and starting Tagrisso, I have not set set foot in ol’ Club Med (UCI Orange).   Life is more enjoyable when it is not designed around three-week blocks of time.  Life is so much simpler without drug-induced diabetes and without Metformin. Life is a beach indeed.

My son, his wife, and their ten-year-old son – an only child – the one who they thought would get past statutory age still unclear on the concept of rhyming, visited me for five days in my manor in the retirement resort living at its best.  I delighted in the opportunity to host them.  However, having given up the vehicle to be true to my new minimalist lifestyle, I became the tourist!  In their rented car, they hauled me around town.  We hiked a steep trail that took an hour and a half round trip.  We gloated over our accomplishment of making it to the top where we could see the grandeur and beauty of the Pacific Ocean.  My chest swelled with pride in going to toe to toe – albeit a tad slower – with the young ones during the ascent. But the descent was another story.  My son had to hold my hands.  Otherwise, my bod rolling down uncontrollably to the bottom of the canyon like a  fallen log was a distinct possibility.

I miss Dr Brevity and his staff.  Obviously the feeling is mutual.  Out of the blue his RN took time from her extremely busy schedule, phoned me and asked how things are going. The trial coordinator sent me a social media message saying “I am missing you that’s all.” I like to think those sweet thoughts could pulsate vibes to the CT scan machine to take wonderful images during my scan.  Wishful thinking is good.

Swollen Feet and Ankles

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Nowadays, each time I notice any little unwelcome change in my body, my finger is ready to point to cancer and anything related to it as the culprit.  One day last January, I noticed my feet and ankles were swollen, a mysterious condition that I had never experienced before. Having survived many mysterious ailments decades after surviving statutory age, I put swollen feet and ankles in the blame game department. Right off the bat,  I wanted to declare the swelling as a side effect of the Tagrisso pills but I couldn’t.  They hadn’t been shipped to me yet at that time!

As usual, I did my sleuthing. How did that happen? How could I suddenly have swollen feet and ankles? I thought only pregnant women got them. Or women from third-world countries that still have the disease called beriberi. Even when I was pregnant I never had swollen feet and ankles, but my breasts became swollen with milk for the infant right after childbirth. Those I liked because they made me look voluptuous overnight.

I consulted my RN friend in Albuquerque.  Over the phone she gave me a mini-course on swollen feet and ankles based on her education and experience. After the session, you’d think I would have been satisfied and put the issue to rest.  Oh no, not me. I’m an engineer.  I have the need to know.  Why do feet and ankles swell?  To find out, I returned to Google University (GU) and audited the course Swollen Ankles 101.

I searched GU only for what applied to my case. After all it’s all about me, which takes me back to the mother of all disclosures: I am not giving medical advice here. Remember I am a retired civil engineer who at the peak of relevance was only concerned about sewage flowing downhill. And it usually did, and still does, unless someone pumped it out of a place where it is not moving and hauled it somewhere where it can do its thing – flow downhill.

  1. Consumption of too much sodium causes feet and ankles to swell. After reading that statement, the light bulb over my head went like the flashing light on a police car. It made sense! My episode of swollen feet and ankles had immediately followed my bacterial lung infection event. During the coughing disturbance, I needed lots of liquids – water, tea, beer, soups – to help get rid of the mucus from my body.  I toyed with the notion of concocting from scratch the hearty chicken soup that everybody and his brother swear as sure cure for cough and cold but I couldn’t. There was not one dead chicken in the freezer.  The bed also beckoned me to loll. I resorted to canned soups, which had never been part of my eating regimen. For some reason, the canned soups tasted yummy those days, especially Trader Joe’s clam chowder. Its label on the can said, three (3) servings per can. No way, I argued with the label, One serving per can! And I ate the soup to my heart’s content over and over. During the sleuthing process, I re-read the label on the can.  It says one serving contains 800 milligrams (mg) of sodium.  Did the math: 3 servings in one sitting equal 2400 mg of salt. According to the Dietary Guidelines, persons 55 and older should not consume over 1500 mg of sodium per day. Conclusion: I ate waaaaay too much salt over a period of 21 days. No wonder my feet morphed into fat burritos.
  2. To treat swollen feet and ankles, elevation is the key.  Site after site in GU assured me that swollen ankles and feet are common and usually not cause for concern, unless accompanied by pain in other parts of the body or other symptoms that could signal a serious health issue.  No other malady symptoms accompanied my swollen feet and ankles.  After reading the encouraging paragraph, I wanted to do cartwheels to celebrate but I couldn’t.  My feet and ankles weighed like lead.  The theory behind the swelling of feet and ankles is simple and makes sense. Sodium is an element that plays a key role in regulating water in the cells of the human body, among other functions. Excess sodium makes the body hold extra fluids in the cells. Like the sewage in the sewer pipe, the water in the cells flows downhill. Gravity takes the excess water to the feet and ankles. There I had it!  To get rid of the swelling, I needed the help of gravity to return the water back to circulation. But how much more downhill can it be if downhill starts from the head then down to toes?  Solution: elevation!  I got a pillow and put it on top of the dining table. I sat on my favorite chair and propped my feet on the ingenious engineering contraption. My feet were higher than my waist.  I elevated my feet and ankles for 20 minutes every hour that day.  Okay. I must confess. My consultant and GU did plant the elevation idea in my head but I worked out the specs and details of the contraption. Bottom line: Elimination of sodium and elevation of the feet resolved the swelling issue after a few days.

Although I’ve been careful with my sodium intake and generally staying in my good behavior, my ankles still swell occasionally. Minor swelling. It’s a good thing I’m not into ankle bracelets. What I do when the swelling happens is I review the day’s immediate past activities and try to figure out what triggered it. I find that too much walking or prolonged sitting or standing causes it. Who knows! But surely, one thing happens when I elevate those feet up a few times for 20 minutes each time: The fluids mosey on back to circulation and allow the ankles to look sexy again…to a certain segment of the population. So I read.

One Tagrisso Story

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

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

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

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

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

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

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

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

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

The Dawn of a New Day

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

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

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

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

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

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

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

A Postcard From the Pits

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The news about Feisty Heifer – that would be me – was grossly exaggerated: that she was last seen blog post in hand, riding a broom that was careening to the Pearly Gates. Truth of the matter was, the last of my mystery ailments 2016 series just had to get in on the action. Some unknown nasty bacteria decided to occupy my lungs on my way back from NM to CA after Christmas. It sure stopped cold my first foray as a cougar. This cub and I had planned on crashing a full-regalia New Year’s Eve Party in our retirement resort. It happens when a couple thinks the whole world waits for them to buy tickets the day before the event. What was he thinking!

My poor lungs! The Milky Way has occupied them for nearly five years now. In December 2015, after the Tokyo/Shanghai trip a bacterial infection battered the lungs some more. This past December, a new host of inflammatory characters pummeled them yet again.  And that in spite of  pneumonia and flu shots in November.

For another first time in my life, I faced sickness alone, which had never occurred to me as a distinct possibility.  There had always been somebody hovering around me, asking how do you feel? Can I get you something? Or ordering me around to Go to Urgent Care, Go to ER, Take Ibuprofen!

I faced seven days of antibiotics, which generally makes me feel crappy.  I got to thinking, Who will help me? Who will nag me? The answer was unequivocal: me, moi, and no other. My present lifestyle is a choice of mine and the consequence is that I have a monopoly on the caregiving action.

When this last bacterial infection made me feel really, really bad on the second day, a burst of creativity in the caregiving department washed over me. I thought I’ve got a serious ailment here – inflamed lungs filled with crud that caused hissy-fit coughing,  sounding like a bongo drum. I considered having my cabbie cohort  to drive me to the ER and get me some tender loving care from the young handsome ER doctors of Southern Orange County. But coughing alone, no matter how bad, is not ER material. It has to be accompanied by other life-threatening symptoms like nausea, excruciating pain, shortness of breath, chest tightening, high fever.  I had none of those.  In fact, my appetite seemed to have perked up. What’s the matter with me! So out with creativity. The only thing I could do was wait out the antibiotic to do its job.

But I have to hand it to my poor lungs. You’d think that considering myriads of obstacles thrown on them by the Milky Way, plus bacteria-caused inflammations that block the airways two years in a row, there would be shortness of breath qualifying me for a trip to the ER.  Maybe my lungs have more extra airways than the poor ordinary mortals who are deprived of the cancer experience.

Meanwhile, a new experience awaits. Today it’s official. The progression under CO-1686 is for real, in accordance with the RECIST standards for solid tumors.  I was on the ill-fated Magic Pill just three months short of three years.  Goodbye Poksceva. Goodbye diabetes. Goodbye Metformin.  Goodbye suspense. Goodbye My CO-1686 blog.  HELLO TAGRISSO!

The mucus machine has whirred down. I think I’ll crawl out from under the biggest rock in the pits.  I’ll blow the dust off me and do a little happy dance.

 

 

 

 

 

 

 

 

 

 

 

My CO-1686: Something Old, Something New

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My CO-1686: A Reset and a What?!

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I take my responsibility to share information as seriously as I take my responsibility to provide sound whenever silence exists. This post is a shout-out for my durable comrades in the CO-1686 non-trial and a special howdy for my friends and the lurkers who warm my heart.

Beginning in May of this year, my fasting glucose rose gradually again from the normal of below 100. By August, it was 167.  There was even a 193 reading, a disconcerting number to diabetes managers, but  Dr In-and-Out did not seem concerned.  He kept reassuring me, Labs are good, despite written report warnings High! Pre-diabetic!  I wondered what readings would excite the Good Doctor.

Being a Google University (GU) scholar, I tried to lower the blood sugar numbers on my own.  As an engineer, that’s what I do – solve problems.

I took Metformin religiously, even doubled the dosage. Nothing happened.  I eliminated sugar from my diet. No effect. I examined my stress level. Zero. I’m not the stress kind of gal. In short, I failed to yank the numbers down. Then one day, the light bulb over my head flashed. The perfect solution to my blood sugar problem descended upon me! I stopped drawing blood from my pinkie and gave up reading my fasting glucose numbers altogether. What I didn’t know didn’t bother me any more.  What a concept!

At the same time that my glucose numbers were rising, Charley Horse returned to my life. It seemed like every time I moved, a cramp threatened to happen. My toes would lock in awkward positions. Fortunately, I sensed the menace’s arrival.  I stood up, paced the room wherever I was and the would-be cramp went away. When a cramp threatened me in the swimming pool, I quickly dogpaddled to the deck.  I followed religiously my Hydrate, Hydrate, Hydrate mantra but the cramp scares kept on coming. All the hydration motions did was award me more frantic trips to the potty.  The heck with it.  I chalked it up to human aging.

Then came my CO-1686 43rd cycle Onc appointment, which I had not considered when I took a grief break. The appointment date left me without the Pills for five days. In other words, I inadvertently took a drug holiday, which consequently brought dumb luck. I became cramp-threat free and my fasting glucose reading mysteriously returned to normal. Jubilation! My body had done a reset.  Feisty Heifer did a happy dance.

Two days later I had my umpteenth CTscan.  For the first time in my nearly five-year cancer journey, its result was posted on my Patient’s Portal. I had been so used to seeing the same Stable, Stable, Stable that I read the report with great relish.  And then it hit me: The discussion was about mild progression!  What?! Has the beast risen from the scarred tissues? I read and re-read until the report convinced me it was indeed different from all the others of the past. On the bright side, there was no pleural (lung) nor pericardial (heart) effusion and all else – bone, liver, kidney, guts, lymphatic path –  were awesome.

I was expecting that afternoon a call from my twenty-something trial coordinator because she had promised to phone me and we’d make plans to case my new digs for a possible future party leading to a Pacific Ocean beach. Sure enough she phoned but only to tell me Dr Brevity wanted to see me the following week.

I had issues with the CTscan report coming to me directly when I never asked for it. In my five years as cancer patient and having gone through four university hospitals, the radiology report had always gone to the referring oncologist, who in turn reviewed the result with me as we analyzed the  images together. To deal with this upsetting report, I prepared  talking points for a serious presentation aimed at discarding that report.  I’d insist on a favorable report.  Yeppers.  Count me in as the type of candidate who’d receive only eight votes out of thousands and demand a recount.

At the consult, the Trial Coordinator and the RN stood at attention as Dr Brevity assured me the increase in size of my main nodule, the dormant flying saucer at the bottom of my left lung, is very tiny and does not meet the Response Evaluation Criteria in Solid Tumors (RECIST) for progression. He admitted he only wanted to hear my thoughts about what to do with it. Are you done talking? I asked. He said he was done talking.

I stepped up on my soapbox: I have issues with that report.  It must have gone to my Patient’s Portal by mistake.  It was probably intended for a reviewer. And I ranted on and on about how the report left much to be desired.  Everybody was so quiet, you could hear a pin drop.  As it turned out, what had gotten inadvertently into my Patient’s Portal was part of a very incomplete report. All my ardent speech rehearsal in skinny girl jeans and stilleto heels in front of a full-length mirror was for naught!

Dr Brevity stated that if in fact the beast had risen from the dead, he’d want to know the mechanism of the progression, as in, Did it mutate and if it did, what is the cancer mutation now? A biopsy would answer that question.  He followed up with another suggestion.  How about surgically removing that questionable mass of the lung?

Then came my turn to toss my two cents in.  I said, We went through this before. A radiologist, the one who I thought suspected me of having too much fun, had declared my main tumor “progressed.” We disagreed, challenged him, and took our case to the Supreme Court of Radiologists.  The radiologist who ends all radiologists consequently took our side, which obviously was right.  We have been stable since. Why don’t we ask the Grand Poobah again?

The trial coordinator answered swiftly:  You are no longer in a clinical trial.  Aaaah. Decisions had been made without my input.  It happens when awesomeness is all that one’s got.

So everybody momentarily backtracked from the not-so-sure problem.  It was resolved that I’d continue taking Poksceva.  At the next scheduled CTscan, we’ll eyeball dimensional changes, if any, of the one nodule that the Supreme Court of Radiologists had once proclaimed, It went stable a long time ago!

Meanwhile, I’ll mosey on down to my new kicks: the Laughter Yoga Club.  It’s good workout for the lungs of non-laughers and laughers like me who live alone and don’t get their quota. Yes, such an assembly exists and no one tells jokes there either.  Check it out.  Here’s one link: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=11&cad=rja&uact=8&ved=0ahUKEwjSmfePtuLPAhUG5WMKHYaZAbQQFghUMAo&url=http%3A%2F%2Flyinstitute.org%2F&usg=AFQjCNFa_Lx2wN1jz5n5ct03kCDk60ry9A&bvm=bv.135974163,d.cGc