My CO-1686: Stable, Stable, Stable, and Moving On

Let’s discuss CTscans.

Relevant parts of my latest CTscan reports (10/29/2014) state: “There is a STABLE spiculated nodule in the posteromedial left lower lobe most likely a (treated) primary lung malignancy. There is a curvilinear zone of suspected scarring in the posterolateral left lower lobe, STABLE. There are at least ten STABLE scattered hazy sub-centimeter poorly defined nodular densities and amorphous lesions superimposed upon moderate severity emphysematous change with varying degrees of air trapping in both lungs.”

I got this. My inner linguist can translate the radiologist’s highfalutin technical terminologies to the vernacular. Based on my Google University Oncology training, here’s my interpretation of the report as written in street language: “The main tumor at the bottom of the left lung is STABLE. Part of it may just be scarring and it’s STABLE. Who knows! At least ten of the ‘too many to count’ tiny nodules in both lungs may be cancerous but they are also STABLE. The rest may just be bird caca infection.”

The report practically echoes all the other reports I have received since December 2012. The first after-treatment CTscan would be the one done 100 days after Tarceva mauled the 3cm x 3cm cancerous mass and reduced it to a mere sliver of a nodule at the bottom of my left lung. Other vital aspects are repeated in report after report: no metastases outside the lungs, no involvement of lymph nodes, no hilar or mediastinal mass, nothing suspicious in the brain, bones, kidneys, liver, pancreas, gallbladder, bowels. No wonder I have always felt feisty enough to consider entering the mud-wrestling contest. But all the reports keep reminding me that my uterus is already absent. That gives me pause.

Since treatment facilities don’t recognize a cancer patient with a Certificate of Stability award, I’ll go ahead and issue me one. I have this calligraphy pen set that had been used in producing self-award certificates in my days of visualization: Miss Universe, Engineer Extraordinaire. Outstanding Businesswoman. Mother of the Year. This time, I’ll proclaim myself a “Cancerist,” a sufferer of a chronic disease. Don’t ask me about the terms for the non-chronic or other chronic cancers. I can only invent a word for the kind of cancer that I have. Everybody’s cancer is different.

So far, the fight between this Tarceva Diva and the cancer can be summarized this way: In 20 months, Tarceva reduced the cancerdude to a pulp and knocked it down. At the count of 10, the CO-1686 drug sat on the prostrate perp’s face. It’s been eight months since and counting. In addition, the CO-1686 drug lowered my historically high cholesterol and made me lose unwanted weight. I’m loving this drug!

It’s time to move on now as far as describing anything in the CO-1686 trials. Since the very beginning, I have reported the routine bloodletting, Electrocardiogram (ECG) tests, and CTscans in layman’s language and picturesque descriptions. The archives await those who care to read the blow-by-blow accounts. My next post on My CO-1686 will be if or when I’m kicked out of the trials. No news will be good news, in other words.

I’ll continue to do my share in advancing science by taking my CO-1686 medications, allowing the bloodletting trade to flourish, sharing with the scanners the intimate details of my innards, and giving the Onc, radiologist, and their gang the opportunity to do their thing to justify their pay. Meanwhile I continue my search for relevance as discussed in this link:

A number of my blog followers have egged me on to do something. They told me that I now have the experience to fill an informative humor book that can help to enlighten and entertain the very scared people: those newly diagnosed with cancer and the folks who love them.

I think I’ve got the beginning, middle, and ending figured out. If I keep the book lighter than “War and Peace,” I might live long enough to finish writing it.

Revisiting Tarcevaland

Once upon a time, there was a quirky queen named Queen Diva Poksa who loved to tell tales to her fiefdom, Tarceva Divas and Dudes. She told this story on February 7th 2014:

“Around the first anniversary of taking Tarceva, Big D entered my life, forging an awkward triangle with my husband and me. Those first days of the unplanned relationship will be forever etched in my mind.

It was 8:00 a.m.; a new Tarceva day beckoned. My husband and I were ready to eat breakfast. I gently folded the napkin on my lap, poked the over-easy egg with my fork and watched in fascination as the yellow yolk oozed under and around my homemade sausage. I scooped a spoonful of garlic fried rice but before it could reach my mouth, a sharp cramp rumbled inside my tummy. I had learned to recognize the sensation. Big D demands urgent attention.

“Oh no!” I gasped. “Not now. I hate it when it happens.” Before my husband could utter a word, I grabbed my smart phone and rushed to the Queen’s Haven (QH), on the double. Prior to the electronic age, I used to read a book or a magazine while sitting on the throne. Now my eyes are glued on the smart phone: browsing the internet; reading emails, Drudge Report, and Inspire; or googling something. On this particular occasion, I didn’t realize I had overstayed my reign until I tried to stand. My legs had gone to sleep!

“Are you okay, Honey?” My husband’s voice outside the QH door startled me. “You have been there too long. Do you need help?”

“I’ll be out in a sec.” I needed to hurry out of there or he might try to John Wayne the door and save his damsel in distress. The sensations in my legs returned and I quickly exited the QH.

I picked up my spoon and fork to finish my now cold meal. “I swear Tarceva has reconfigured my elimination system.”

“Do we have to talk about that this time?”

“Oh, okay. We’ll talk about it at lunch.”

After breakfast, we got in the car to run our errand for the day – the liquor store. We were running low on cerveza. As my husband steered the car to the first intersection, I cried, “Turn around! Turn around!”

“You have to go again?” He asked worriedly.

“No. I forgot to take Big D pills. I’m supposed to take two immediately after the first number is done. I also need to carry some around just in case.”

He obliged and we went our merry way for the day.

That episode led to our acceptance of living with my new normal, as follows:

1. Big D, a cantankerous overbearing curmudgeon, is absolutely part of our day’s planning.
2. Wherever the three of us go, I survey the coordinates of QH locations to strategize the shortest path in case of a mad dash. When I feel like I’ll pass something that rhymes with “pass”, I accept that it might not just be a pass. I go for the mad dash just in case.
3. In the unpleasant event that the QH does not have the desperately needed stuff near the throne, I always carry an ample supply of the soft and fluffy tree byproducts.
4. Big D pills are ever-present contents of my purse.

Old bad Big D just visits occasionally these days, but surprise visits do not worry me anymore. I am well adjusted now, confident that anything can be handled any time at any speed! “

Two months later, Queen Diva Poksa gave up her crown made of empty Tarceva bottles and moved on to the CO-1686 clinical trials. Old Big D had nothing to do with the relocation.

The Secret at the Reunion

My elementary school classmates and I love reunions. We are among the few people on earth who first met in grade school and reunite every year for decades. Our group’s name, “Bundok Society” translates to Society Up the Hill not because our families belonged to the proverbial “shining city on the hill.” It’s more simply like, our school was built on higher ground. The English word “boondocks” came from the Filipino word “bundok,” which the American GI’s picked up while fighting side by side in the Philippine mountains with the Filipinos during the war. Okay, so much for the earth-shattering history lesson from the “swami” today.

In 2013, we held our reunion just outside Los Angeles in a classmate’s home. The motif was Hawaiian. All the gals, except one, came in colorful ankle-length muumuus and the guys in boring black or navy blue island prints. Men generally don’t get too excited about wearing reds and and pinks. The only woman who shunned the floor-length muumuu was the beauty queen (BQ) of our younger days. She looked ravishing in a loosely fitted above-the-knee shift dress with dainty flower designs in pastel blues, greens and lilacs – exposing slim shapely legs. The guy near me at the buffet line whispered to me, “Do you notice all the women except BQ are covering up their fat knees?” I tried to kill him with the how-dare-you look. And we laughed.

I took the “don’t ask, don’t tell” approach about my lung cancer. While I admit to being a glutton for attention, a reunion is simply not a venue for cancer talk. Yes! Amazingly, my shameless self-promotion has limits.

The reunion, which centered around picture taking; wolfing down whole steamed lobsters, barbecued pork ribs, mangoes, and rice cakes; and re-hashing decades-old stories ended in talking about the 2014 reunion!

Months after the gathering, I accepted the guest-blogging gig at the University of Colorado Hospital (UCH) Cancerblogs. I agreed to write under my real by-line, which necessitated coming out of the closet of my aliases “poksa” and “celpeggy.” When my first UCH guest blog came out, I included the reunion gang’s de-facto fearless leader in the e-mail distribution list. She forwarded my guest blog to the rest of the reunion aficionados. After reading my cancer survival story, all, except one, got excited. The “reunionistas” started making concrete plans for the next reunion!

The one exception in the excitement department emailed me. To respect the confidentiality request, I’ll call this person FD. That would be “Filipin Doe.” This person is a cousin of Jane and John, the notorious members of the secretive Doe family. FD wrote that two years ago nodules showed up in FD’s lung x-ray. A pulmonologist has been monitoring FD’s CTscans and the nodules have grown and increased. FD was supposed to have another scan soon and confessed that since the first x-ray, FD has been a wreck.

FD and I connected because we are of kindred spirit in lung disease. The difference is, everybody knows mine is lung cancer. Nobody knows FD’s disease. As an Oncology degree holder from Google University, I’d say that all FD has is bird caca infection. A nodule is not cancerous until a biopsy says it is. Of course, my guess is as worthless as any out there.

After a couple of weeks, I emailed FD to check on the diagnosis and to offer reassurance that if cancer is the word, I’d be ready for conversation. No response from FD. I followed up my emails with two phone calls. Both times FD ignored me. So I quit! A Good Samaritan can only do so much. No more Miss Nice Senior Babe. No more Google University’s Compassionate Alumna of the Year. I could only hope that if FD has cancer, FD would read my post Maybe I can help save a lung.

Our group held the 2014 reunion recently in Las Vegas at a classmate’s home. As usual, we shrieked at the sight of one another and launched into the hug-hug, kiss-kiss mode, like people do when they have not seen each other in a week. “Glittery” was the wear motif. There was not much we could do with the theme. We all looked our boring best in dull shimmering tops.

FD was there. We hugged a little longer and a tad tighter, but discreetly. Nobody noticed. When the embrace loosened up, I whispered to my comrade, “Does anyone here know?” The answer was no. “Mum is the word then,” I assured the secretive one.

After feasting on tender beef chunks swimming in coconut milk sauce, oxtail and vegetables smothered with peanut sauce, baked salmon topped with some kind of sauce, and a ham the size of my thigh before Metformin tweaked my figure, the reunionistas repeated stories that no one gets tired telling or hearing. Cancer talk was practically nil. Before the event ended, the society established the coordinates of the possible reunion sites for the next two years.

My husband and I left the party minutes ahead of time. But first, I gave each reunionista and each forbearing spouse a big hug and a word or two to which each responded with a word or two. FD and I promised to keep in touch.