#LCSM, attrition, camidge, cancer, cancer diagnosis, CANCER HUMOR LAUGHTER TARCEVA DIVAS DUDES, cancer laughter, cancerversary, celia ruiz tomlinson, clinical trials, Clovis Oncology, CO-1686, divas and dudes, Dr Ou, Iressa, Lung cancer, ODAC, Phantom, poksa, poksangbabong, tagrisso, tarceva
What a difference four years can make! Think of it. In four years, a 14-year-old can become a high school senior, collect his diploma, get buzzed at a graduation party, and wake up to complain about feeling disenfranchised. The change is even bigger for younger children. My son told me that his son, my only grandchild, then five years old, couldn’t grasp the concept of rhymes. My son would ask his son, What rhymes with cat, and he’d proudly answer Dog! I was floored. I thought, This is not the genius I had envisioned. Clearly my DNA is not coursing through the kid’s veins. Four years later, he emailed me his desk-published book about the ramifications of sunsets complete with illustrations and a poem – a remarkable piece of creative work by a nine-year-old boy. I did a “Yes!” and secretly apologized to the future Artiste Extraordinaire and thanked heavens I had witnessed my grandson’s metamorphosis. I can hardly wait for the budding intellectual to get his driver’s license and take his “Abi” Miss Daisy for a spin and bonding time.
Four years ago – 2012 – an oncologist diagnosed me with Non-Small Cell Lung Cancer, Stage 4. In the span of four years, I experienced treatment with Tarceva for 20 months followed by rociletinib of CO-1686.
I reviewed my blog archives and saw no post in June 2013 about my first cancerversary. For one thing, the blog was not even a glint in my eyes that year. For another, my first Onc had given me a dire prognosis – only eight months to live without treatment, a year at the most with treatment. The weight of the death sentence jarred my head and exiled all writing thoughts to another universe. Thus, on my first cancerversary it’s safe to guess that I was probably eating deep-fried oysters, pouring cold beer down my throat, sitting in a lotus position and waiting to keel over dead any moment. Mr Reality Check barged in, shook my head, and said, Tarceva whacked your lung cancer to remission seven months ago. What is your problem? Stunned, I must have stood up abruptly, spilled my beer, and staggered on with my life toward my second cancerversary.
I could not find any account of my second cancerversary either. I reviewed the blog archives and read all of my June 2014 posts. The posts glowed with CO-1686 initial promises and the awesome positivity with which my body was responding to it. The posts chronicled gung ho blow-by-blow accounts of my early days in the trial, about getting the stock market excited over my CO-1686, about cancer diagnosis not a death sentence, yada, yada………My exhuberance was palpable! What was I thinking? While I was at it, I could also have gushed about my second cancerversary. But no, not me. I was so intensely focused. What cancerversary? It happens when multi-tasking talent eludes the blogger. For the same reason, my Physical Education teacher had tactfully excused me from a folk dancing group in grade school. I could not dance and listen to music at the same time.
In 2015, my third cancerversary blog post covered catharsis and ramblings about my shock upon receiving the cancer diagnosis. It also made up for the missing accounts of the first two cancerversaries amidst a maze of convoluted wordy distractions.
Now June 2016, my fourth cancerversary, I look back in amazement at the advances made in the treatment of my type of lung cancer. When my cancer cart started rolling in 2012, outside of chemotherapy, the one-a-day pill Tarceva (erlotinib) was the only drug in US oncologists’ medicine cabinets. Now Gilotrif (afatinib), and Tagrisso (osimertinib) keep Tarceva company. Poksceva (rociletinib) would have gladly joined them but since the trial sponsor decided to discontinue its pursuit of FDA approval, the brand name Poksceva now resides only in my head.
Love that brand name Poksceva! It has an exotic ring to it, a sense that one trial participant had an epiphany about it while trying to commune with her pole dancing inner goddess. Okay, I confess: a nosy reader came up with the moniker and the name-the-drug contest judge – that would be “moi” – adopted it.
The sponsor is phasing out the CO-1686 trial by attrition. The result of my most recent CTscan showed STABLE. Hah! There’s no folding the trial for now. I credit my durability to the notion that I once belonged to the family of Phantom, the comic strip hero, but I was banished from the jungle because thunder thighs didn’t look menacing in the family’s purple tights uniform. As I spoke in Maryland last April imploring ODAC to recommend approval of rociletinib, I secretly wished for cousin THE Phantom to appear out of nowhere and save CO-1686, but it was not to be.
Meh! Things happen, but as long as the sponsor does not demand the return of the key to the silo holding the pills that keep on kicking my T790M, Dr Brevity, Poksceva, and I will soldier on.
I join in spirit anyone out there who is doing the happy dance to celebrate anything!
#LCSM, camidge, cancer, cancer anniversary, cancer diagnosis, cancer humor, CANCER HUMOR LAUGHTER TARCEVA DIVAS DUDES, cancer survival, cancerversary, catharsis, celia ruiz tomlinson, clinical trials, CO-1686, Dr Ou, NED, tarceva, UCH cancer center, UCI, UCLA
I’ve always shimmied to my drummer’s unusual beat; we are a parade within a parade. Unlike most people with cancer, I reckon my cancer anniversary from the day my cancer journey began, which is pretty hard to pin down.
My cancer cart started rolling in June of 2012. I had returned to Albuquerque from my temporary residence in California to serve on jury duty or face contempt charges according to the judge. Instead of rattling around in my empty house, I cozied up with my son, his wife, and their six-year-old boy and enjoyed quality bonding time with them in their own home. Their house is also walking distance to the courthouse.
One evening, the court clerk notified me that I’d be useless the following morning. I took advantage of the freedom and went for my two-years-overdue physical check-up. I also had had a recent cough for which I blamed the smog wafting from LA to Southern Orange County, the leaf blowers stirring dust daily, and the red grease floating on the Mexican “menudo.”
My Physician’s Assistant, a statuesque Hispanic woman, mid 30’s, did the works. At the end of the visit, she divulged something ominous. “I don’t like the looks of your lung x-ray.”
She might as well had poured ice-water on me. Now I know how the triumphant NFL coach feels after the dousing at the end of the Super Bowl game, except the chill that washed over me was not celebratory. Rather, it was foreboding. Lung cancer loomed large on the horizon. The distinct possibility shook me to the core.
The angst drove me to the internet where I found Inspire.com, a patient-oriented board. I lurked. And lurked. I noticed survivors trying to calm down apprehensive newbies with the “It’s not cancer until the biopsy says it’s cancer” spiel. I wondered, Is a newbie supposed to suck her thumb until the words “You have cancer” bite her in the face? Not me, man. Gotta have catharsis!
Catharsis. I love brandishing highfalutin words. It happens when the blogger is a legend in her own mind, but I must confess: I have help. Catharsis, according to my buddy Mr Wiki, “is the process of releasing, and thereby providing relief from, strong or repressed emotions.” To many facing cancer, crying, praying, or blaming may provide catharsis. For me, learning proved to be cathartic.
After the image of a one-inch-diameter Flying Saucer at the bottom of the left lung and the Milky Way in both lungs hit my eyeballs, thoughts of the enemy consumed me. What are those things in my lungs? What are nodules, masses, tumors, infections, inflammations? For anything that could show up in the lungs, their causes, symptoms, and treatments, I surfed the internet in the week between X-ray and CTscan. My high-octane enthusiasm for knowledge ratcheted up to the nuances of radiation – proton, photon, gamma knife, etc. – in the days between CTscan and PETscan. My intense research earned me a Google University Oncology Degree, which so empowered me that by July 2012 as I laid face down on the biopsy table, I had already dug in for the fight of my life. But first, I asked the medical technicians why the biopsy table did not have a hole for the face like the massage tables at the spa.
A week later after the Pulmonologist phoned me the cancerous biopsy news, my husband and I ended our condo lease to return to Albuquerque. It was now August 2012. As JJ (Jalopy Jaguar) rolled across the Mojave desert, my inner Mehitabel rose from a nap. Positive thoughts flooded my brain. I was proud of being a Senior Babe. I was glad this cancer thing happened now and not when I was growing my engineering business. I was relieved that my mother, who had always treated me as a little girl, was already resting in peace. Otherwise, the news of her baby’s cancer would kill her. Other thoughts: been there done that, no bucket list to write.
The Pulmonologist picked a Thoracic Surgeon to separate me from my left lung’s lower lobe, which contained the cancerous tumor. Knife day came. The Surgeon slit my back but ended the procedure abruptly after feeling something that ruled out surgery. He sewed me up and referred me to an Oncologist (Onc).
The Pulmonologist and Thoracic Surgeon had committed a mistake that nearly cost me my left lung. Most doctors don’t know anything about targeted therapy for cancer. Hopeful to save other people’s lungs from this DOCTOR-COMMITTED MISTAKE, I wrote this post: https://celpeggy.wordpress.com/2014/09/14/looking-for-the-fearless-leader/
The two men in my life – my husband, then 77, and my son, then 38 – accompanied me to the Onc.
“It’s Non-small Cell Lung Cancer, Adenocarcinoma, Stage Four,” the Onc declared.
“Stage Four!” my teary-eyed son gasped. “How much time are we talking about?”
“Eight months without treatment,” the Onc answered unflinchingly. “Fortunately there’s a treatment for her type of cancer.”
“And with treatment?”
“Maybe eleven months, a year.”
A deafening silence flattened the room. Time stood still. When the Onc tried to strike a discussion on treatment, I told him we’d get a second opinion. With that, the entourage marched out quietly.
Looking back now, the moment of silence after the Onc’s pronouncement of my death sentence could have been a group-hug moment. I guess my dispassionate demeanor was not conducive to a group hug. Had I been emotional, my uncontrollable sobs would have drawn the men simultaneously to the damsel in distress. Thus, a heart-rending group hug. Okay, enough of the Drama Queen’s fantasy. It reminds me of a friend who is on sabbatical from the frequent-bride program. She mentored me in 2007 when after four years of widowhood, I had sashayed into the senior dating scene, taking baby steps in the seduction dance of septuagenarian Casanovas. She whispered to me then, “Remember, men like their women vulnerable.” I suppose invulnerability, at least at face value, happens after one has overdosed on catharsis!
The second-opinion Onc put me on Tarceva. Within one-hundred days it whacked the once golf-ball sized Flying Saucer to a shred. Then I entered the CO-1686 clinical trials. The drug has kept the shred stable so far. I’m not NED (No Evidence of Disease). I’ll never be NED per se because of my designer lungs: the Milky Way. I’m okay with that, after all, there are many other things in life I’ll never be – an operatic diva, for example. Tarceva Diva has hit the glass ceiling in the diva department. I also insist that the Milky Way tiny fellas are not cancer but bird caca infection or scars. They’ve been there for at least three – possibly five – years. They don’t cause me cough, fatigue, shortness of breath, weight loss, nothing. Of course I’m aware they may be like volcanoes that will erupt after centuries of dormancy. Or tomorrow.
Between now and eruption day, I’ll stay relevant. I’ll keep on reaching out to scared newbies and those who love them, many of whom have written to me through this blog and the social media. Most of them said, “Your blog gives hope and laughter.” Some wrote, “Thank you for sharing your knowledge and experiences.” One Southern gentlemen caregiver put it simply: “You crack me up. You is a mess!”
I’ll kick off Year Four by sharing the fun card that my son sent me for Mother’s Day. Does this dude know his mother or what! Here’s the link: http://marketing.jibjab.com/t/ccbbaKB1dQAT1v2ZeBKHQDF8aJWKvaaaaa?t=2@226872&d=ddmhbsplmhorpm_sndjfsnZjk.dnn&k=C2u&w=&s=gusq://vxv.khciba.dnn/ujdx/TyN-436UJeA9UHIbuLBg?tul@tnvqdd=TssnofNZjk&vsn@lfcjtn=dnZjk@tgbqf&tul@udsl=flbhm&tul@dnosfmu=Rbs, 18 NZz 1106 08:42:24 9161z&vsn@bblqZjfo=sy@ik@dnZjk@fbbqer@edgZvku@qfbjojdos@onuhghdZuhpm@3