Gloat-plaining: My New Pass Time.

August 30, 2016

Joyce's Fat ClothesAnother summer has slid past. Much of it was spent in bed, recovering from my ongoing treatments with Gemzar. I switched to Gemzar February 4, when Vinorelbine proved ineffective in stopping tumor growth. The Gemzar seems to be slowing and/or arresting tumor growth, but I’ll need to be treated with it 3 times a month, forever. Or until it stops working. Another not-so-happy development has been the worsening of the pleural effusion outside my right lung. In a nut-shell, malignant pleural effusion is when fluid containing tiny cancer tumors begins filling the pleural cavity surrounding a lung. This fluid pushes into the lung, reducing its capacity. Kind of feels like drowning: most unpleasant! I underwent a surgical procedure called Pleurodesis, designed to omit the pleural space and get rid of the pleural effusion. So far, seems like it worked. I’m definitely breathing easier, and I’ve weaned myself off the 24/7 oxygen.

Amid all the above mentioned trials and tribulations, something happened today that made me chuckle. While getting ready to go out to lunch with a friend, I spent at least an hour trying on outfit after outfit. Having had a weight problem for most of my life, this isn’t a new scenario. Except usually the process involves nixing outfits because A. They’re too tight or B. They make me look fatter. Today I was nixing outfits because I was A. Swimming in them or B. They made me look dorky because…they’re way big. Since December 3rd, when I re-started appetite-killing traditional chemo, I’ve lost 35lbs.

I am far from thin. Technically, I’m overweight, just not obese anymore. Size 14 jeans I squeezed into last summer now unattractively sag in the rear, and I’ve never been a fan of the ‘jeans crotch at mid-thigh’ look. Usually, I’d just pull out my skinny jeans, except that the last time I was a size 12 was around 1992; THOSE skinny jeans were given away in 1999, along with my size 12 power suits (think shoulder pads that made women look like Defensive Linemen as we strove to dress for success).

The way your birthday suit snaps back into shape when you’re 20 isn’t how it behaves when you’re 62. So, I won’t be prancing around in a bikini anytime soon. And I won’t be standing around admiring myself in the all-together in my full length mirror. Think Shar-Pei. Albeit a rather triumphant Shar-Pei.

Instead, I’ll engage in a bit of positive complaining. I call this ‘gloat-plaining.’ Can’t truly gloat, since the weight loss had nothing to do with any will power on my part. Complaining would hardly be honest. Count me as gloat-plaining and looking forward to a bit of retail therapy.

That BOHICA State of Mind

December 17, 2015

Langer's Pastrami Sandwich20 years ago, a work colleague I was very fond of taught me an acronym he picked up during his stint in the military: BOHICA. This stood for, “Bend Over: Here It Comes Again!” My long suffering friend used it to describe life as usual at the newspaper we were employed by. Probably to my dour friend, Dick, life was chock-full of BOHICA moments. While I wasn’t always Ms. Positivity back in those days, I never was convinced he was right. I believe most clouds have silver linings, but that not all silver comes shrouded in clouds.

Now I’m 5 years into my fight with non-small cell lung cancer, AKA “The Beast.” In all this time, I’ve never dreaded receiving any treatment, be it chemo or radiation. To me, the treatments always brought hope, not fear. I’d nearly forgotten the term, BOHICA.

For 20 months, I was part of a clinical study of an immunotherapy drug called Atezolizumab. The drug did have some side effects: terrible headaches, mild (for me) rashes and some fatigue. More importantly, it kept my lung cancer stable for 18 of those months, even decreasing the size of some of the tumors. The drug finally stopped working. The Beast is growing again. Time to switch weapons.

My doctor prescribed Vinorelbine, which is not immunotherapy. It is a ‘kill-all-the-cells’ type chemotherapy. She proposed a schedule of a treatment 2 weeks in a row, then a week off, then repeat until the end of February. Despite some of the nasty-sounding side effects I read about, I was hardly in a BOHICA state of mind. Usually, chemo hasn’t grounded me for more than a few days. I figured all side effects could be banished with a few anti-nausea and migraine pills, and a day or two of bed rest. I figured I’d be able to participate in all the usual holiday parties, no problem.

December 3rd I received the first “push” of my new drug. It took 10 minutes. Wham! Down for the count. Some of the side effects responded to meds, others never did. The next week was spent in bed. I was so weak, my wife had to drive me to Kaiser for pre-chemo blood tests a week later. My oncologist called to tell me that we’d be skipping chemo the next day due to low white blood cell counts. “With those white cell counts, we wouldn’t touch you with a ten foot pole.” So, back home to nearly another week in bed.

Finally, I’m feeling like myself again. At my request, today Joan and I visited Langer’s Deli to indulge my sudden craving for pastrami. If the blood test Gods concur, this Friday should bring another dose of Vinorelbine. I am determined to get through this treatment. The challenge is avoiding that BOHICA state of mind. Instead I’m going to be thankful for the pounds that are slipping off, and keep my eye on the prize: KILL The Beast.

Let’s hope The Beast gets the message: for him, everything’s coming up BOHICA in 2016.

Still Here; How I Came Down with Cancer and Began Living

November 11, 2015

Monarch ButterflyFive years ago I was in the middle of living my chaotic, work-centric life. I was blessed with a happy personal life; which revolved around marriage to a wonderful woman; 3 dogs, a parrot and a large, mature group of friends. My professional life was tougher, sometimes rewarding, but increasingly worrisome due to reorganizations.

Unfortunately, I was more focused on the problems at work than the bliss at home.

For nearly 2 years I’d had a very painful, chronic cough, which produced a small amount of blood. My then doctor thought the cough was due to allergies and treated it with Flonase. Finally, I saw another doctor. She saved my life by sending me to a pulmonologist, who sent me for a CT scan, then for a bronchoscopy. Having never been a smoker, I wasn’t worried. On November 26, 2010 I woke up from the bronchoscopy to be told I had lung cancer. I couldn’t believe it. How could a never-smoker have lung cancer? My wife took me home and tried to comfort me as I lay curled up in a mournful ball for the remainder of the day. To me, lung cancer was an absolute death sentence. November 27th I woke up, went to my computer and started looking up statistics. A Google search found that, for the type and stage of cancer I had, the life expectancy was 12–18 months from diagnosis.

The cancer was deemed inoperable so I managed to hang onto both lungs, something I’m grateful for. Over the next few years I went through radiation therapy and several types of traditional chemotherapy. The cough disappeared, as did the tumor blocking the bronchus to the middle lobe of my right lung. A pattern developed: the tumors would shrink some, then time would pass, then they’d grow again and pop up in new places. Next, my oncologist would prescribe another type of chemotherapy. She got me well past the predicted ‘expiration date’ of 12-18 months. Then it was time to seek another solution.

Before I knew I had cancer, I thought my biggest challenge in life was dealing with the stress of my job. My job seemed to consist of attempting to maintain an even keel with a possibly bipolar boss, placate clients both great and small minded, all while trying to motivate underpaid staff to produce their best work for the mere joy of producing their best work. At times it was fun. Often, not. But I let it get to me. I lost countless nights of sleep worrying. After being diagnosed, I retired from my night teaching job of 21 years; having lung cancer is not conducive to giving long lectures. But it never dawned on me to take a break from my day job. Equipped with an iPad and phone, I proudly worked Fridays from the infusion room through my chemotherapies. Perhaps my fixation on work kept me from worrying about my cancer. It’s doubtful it was helping me recover from the cancer.

Despite some of the looks I got at work, it never occurred to me how weird it was to be working with stage 4 lung cancer. Then my oncologist asked me if I wanted to apply for a yearlong study of a drug initially christened, “MPDL 3280A.” It became clear that I’d been handed a new chance. One that might extend my life. Suddenly, I realized the most important thing in my life wasn’t work; it was living life.

I took a disability retirement last year. All that largely self-imposed workday drama has vanished. Life with cancer is hardly stress free, but it’s easier to understand what I can control and what I cannot. I don’t know if I could have helped getting cancer. I can help what I’m getting from cancer. Cancer knocked simplicity into my life and my priorities into order. It’s taught me tolerance for the most out-there advice from well meaning friends, along with an understanding that most people just want you to be ok. I’ve learned to pronounce medical terms I’d never heard of and gotten to know patients and medical staff encountered only because of cancer. And cancer can wake you up, as it did me. It seems to say, “Hey! You’re alive now. Don’t waste it. What’s worth fighting for, if not your own life? And while you’re at it, enjoy yourself!”

November 26th will mark my fifth year since diagnosis of metastatic non-small cell lung cancer. Statistics tell us that only 5% of patients at stage 4 are alive at the five-year mark. It’s looking promising that my wife, Joan, and I will be celebrating another Thanksgiving: our 23rd together.

Who knew that even cancer can come with blessings?

48 months and counting…

November 26, 2014

sunset_panguitch_lake48 months ago today I was diagnosed with stage 3B non-small cell lung cancer and given, with treatment, a life expectancy of 12 – 18 months.

When the young surgeon gave me the news after I awoke from the bronchoscopy, I was not only upset, but incredulous. As someone who never smoked, how could I have lung cancer? After a day spent mourning, I hopped on the computer to research this new monster in my life. I found the grim statistics, and accepted the information. And decided to fight it like hell. Over the past four years, I had radiation, then four rounds of chemo. The treatments shrank the tumors—but only for a while. Happily, each time the cancer resumes growing, my oncologist comes with another chemo drug to try. Hopefully, after the current clinical study ends, there’ll be a new drug available.

The most surprising thing about having cancer: I started relishing life. Not that I never enjoyed life before. But I tended to get stuck in what was wrong in my life and blaming people and circumstances for making my life crazy. After cancer, my focus switched to The Big G: Gratitude. In the beginning, my list was short: I thanked the Goddess every day for my wonderful wife, our funny, affectionate pets, a job that had its perks along with its frustrations, health care I didn’t have to fight insurance companies to get, as so many cancer patients must, and supportive friends and family who lent their prayers and good wishes.

In four years, the list of pluses has grown as most of the resentments fizzle away. While I still send up a prayer of gratitude every night before I drop off to sleep; increasingly, there are bursts of thankfulness popping up each day. Yesterday, after chemo, I found myself blissed out by the feel of sun on my skin while waiting for a ride. Before cancer, the feeling would have been precluded by my overwhelming list of tasks to be accomplished. It finally became clear to me that the “urgency” of these tasks was largely self-invented. I finally figured out what is obvious to happier folks: we’re largely responsible for our own happiness. Only we can allow ourselves to feel joy. The decision to be made was simple: how would I like to spend my remaining years? Bitter and miserable, or mighty happy to be here?

The next stop on the cancer stats trail comes November 26, 2015. Only 5% of patients with this stage of nsclc are still alive at the 5-year mark; another gloomy statistic we hope to beat. In the interim, there are friends and family to enjoy, a turkey dinner to cook and the promise of fair weather to enjoy along with the storms.

Until then, every day will be Thanksgiving.

Life in fits and starts

July 30, 2014

Milky_Way_LJCrokerThe last CT scan results were promising: after a showing a tumor growth rate of 48% between February 23 and May 23, the majority were stable, with a slight reduction in the primary. I agreed to remain in the clinical study, receiving the 8th cycle out of 17 last Thursday.
Because the study drug, MPDL 3280A, works via immunotherapy rather than by destroying any and all cells, the side effects are milder. The nausea, headaches and fatigue are less pronounced, but they still occur, rather unpredictably. The outcome of this has impacted my ability to proceed at what I’ve accepted a normal pace for nearly 60 years: full speed ahead.
My father was a driven, self-motivated, workaholic. Not only did he work hard at his day job, he always had personal projects going that he executed quickly and flawlessly. When my parents bought a new home, Dad didn’t just put in a lawn. He came up with a design for the landscape. He built a perfect,scaled-down replica of our new home and yard in balsa wood, planning every inch in detail. This was while he was fit enough to not only design the yard, but put it in himself. He moved and leveled earth, did all the hardscaping, and planted until we had one of the prettiest yards on the block. With a disdain of anything he deemed, “half-assed,” he constantly showed us that if something was worth doing, it was worth doing to perfection.
Back to the side effects of the drug I hope is saving my life. As much as I hate it, I no longer can complete massive projects around the house—or even small ones—in one fell swoop. Something as simple as replacing the weeds around our backyard fountain with Irish Moss takes days and days. I simply run out of energy. Sometimes, within an hour or two. And that’s on the good days, when I have enough energy to get out of bed. So, I’m learning to do things by fits and starts, as energy allows. No one on earth has a problem with this except me. Apparently, much of my self-worth is based on being someone who can conceive of, plan and complete tasks quickly. I know if my father were still alive, he’d be delighted that I was still above ground nearly 4 years after being diagnosed with lung cancer. Nor does my wife expect me to leap tall buildings at a single bound in my current state, if she EVER did. The battle is within myself.
New task just moved to the head of my To-Do List: focus on the big picture. Which will be completed eventually. In fits and starts.

Something to cry about…not!

May 22, 2014

Red RoseYesterday I underwent the second CT Scan since beginning my new cancer treatments, part of a Phase II study of a new Roche drug. The previous scan, on April 9th, was a disappointment, showing growth in my two existing tumors. I was assured that the new drug, being immunotherapy, sometimes took a few months to begin working. My first treatment was Feb 28, so perhaps the drug hadn’t had enough time to work.
We were hopeful about yesterday’s scan. While I had noticed some new symptoms, I hoped 4 cycles of the drug would help my body begin fighting tumors. Instead, the scan showed moderate growth along with 3 brand new tumors.
My doctor told me that I had a choice whether or not to remain in the study. Despite the less than happy scan results, since I feel relatively well, I could opt to continue. She promised they’d stay on top of the cancer by scanning me more frequently than the study mandates. At any time, I could say, ‘enough!’ and leave the study. Then they’d try another traditional drug on me. The kind that kills all cells, not just cancer cells.
Of course I agreed to continue in the study, and received today’s infusion without further incident, except for an unexpected bout of tears. It’s very rare for me to cry about my cancer. So far, I’ve cried only once: the entire day I was diagnosed, 3 1/2 years ago. The next day the tears were gone, and I was busily Googling “stage 3 non-small cell cancer.” Research generally cheers me up. Even if the news isn’t in my favor.
Today, the tears were short and angry. I have this great life right now. I’ve had time to grow closer to my wife, friends and sister. While I’m hardly prepared to run a triathlon, I wake up more excited about each day than I’ve been for years. So, now that I’m having such a good time being alive…I’m DYING?
Once my wife and Nurse Joyce got me calmed down, I noticed a young woman in tears by the nurses station. She was quickly surrounded by nurses, including Nurse Joyce. It seems the young woman had just found out her father’s cancer, which had been treated by numerous chemo drugs over the past year, wasn’t responding. They’re out of treatments to offer him. All that remains is just keep him comfortable and administer drugs to control the pain until he dies.
Here I was crying over scan results that weren’t to my liking, although I’m far from out of options. The young woman was crying over something real and finite: knowing that she would soon lose her much loved father. Between the two sad scenarios; I’ll take mine.
Yes, I wish 4 cycles of MPDL 3280A had already eradicated my cancer. Maybe the 5th will be the charm; maybe it won’t. Life is still sweet and without too much pain. And I’m not done yet.

Remembering Candy

April 30, 2014

A month ago today, the world lost another feisty woman who just happened to have cancer. Meeting Candy McGowan 3 1/3 years ago in the radiation treatment waiting room was one of the silver lining moments of having cancer. We each had been diagnosed with stage 3B non-small cell lung cancer in late 2010, and prescribed six weeks of concurrent radiation/chemo. We saw each other every day during that time, and our friendship grew. Fearing her health would prevent her availability to her students, she’d given up teaching college. But she didn’t give up. As her cancer escalated to stage 4, it disrupted her life further, forcing her to rely on friends and relations more than she probably would have liked, but she kept up the fight. This year, she agreed to be on the control arm of a clinical study. She figured that even if she didn’t make it; others would benefit from what was learned.
I admired much about Candy: her tallness, her dry wit, her pride and work ethic. She was an interesting mix of activist, intellectual and SoCal beach girl. She had such an naturally dignified demeanor that I always wanted to call her “Candace,” which she probably would have snorted at, had she known. Our relationship was based on trust that we’d tell it to each other straight: no matter how bad the news, we’d never sugarcoat.
Candy outlived the 3 month life expectancy she was initially given by 3 years; long enough to get to know Brixton, the grandson she worried she’d never live to see born. Long enough for even new friends like me to rely on her like an old friend. And, although I never bullshitted Candy about her condition, I seem to have hidden how ill she was from myself. Her death came as a shock, and I don’t expect her family and friends will ever stop missing her.
The one thing I hope she was mistaken about is heaven, which, like many intellectuals of a leftish persuasion, she didn’t believe in. Candy, I hope you woke up there, surprised but delighted—at last—to be wrong.

Made it!

March 17, 2014

Joyce 60th
When I began writing this blog a little over 3 years ago, I really didn’t expect to actually make it to 60. But I did intend to make all the steps towards that age mean something, however far I made it.

Yet, here I am today, celebrating my 60th birthday.

In hindsight, the journey seems easy. It really wasn’t, but the love and support of my wife, friends and relatives has kept me buoyed up and on track. You really do learn who your friends are when you have cancer, and I’m very grateful to have so many devoted ones.

And, having arrived at this goal, my path has changed. I’ve been accepted into a phase 2, year long clinical study for a new immunotherapy drug called MPDL 3280A. Since the study lasts a year, I went out on medical leave March 1. Now my energy must be focused on getting better and allowing the treatments to work without the stress of managing 6 people. As fond as I am of my staff, this was a necessary change.

I’ll continue to fight this latest spurt of cancer by slowing my pace and giving the drug a chance to work. Just as a journey isn’t only the destination but all the steps that get one there, the battle isn’t just about beating the foe; but how one lives every day one is granted to keep fighting. And I’m still in there swinging.

Sorting through the clutter

September 6, 2013

©2013 L Joyce CrokerSummer 2013 turned out to be a roller coaster ride; from cold, windy weather to oppressive humidity and heat. There was plenty of good: relaxing on beaches with my Mature Ladies group, a short road trip through Utah and Arizona with my wife and my sister, and an excellent Labor Day weekend fishing trip 100 miles out to sea. But the bad moments were pretty awful. A tougher than usual six cycles of chemo, followed by the death of my mother and beginning the long slog through probate; topped by an upcoming reorg at work. All these events probably contributed to how I woke up this morning: down in the dumps.
Depression isn’t my cup of tea. When I’m upset about things beyond my control, I try to tackle something I can control. Today I’m working on my out-of-control home office, AKA, “The Computer Room.” There really are computers in there. And a couch, desktops and shelves. Unfortunately, everything is buried under six months of clutter.
As I excavated my way through said clutter this morning, I found the bag with my original ‘chemo kit.’ In addition to the ball of yard, knitting needles and half-knitted scarf, I found the paperwork given to me at my first chemo session in January of 2011. The documents warn of what to expect: hair loss, fatigue and nausea (check, check, check). What isn’t mentioned is the 12 – 18 months “with treatment” life expectancy I was given when diagnosed on November 26, 2010.
Reminded of this 33 months later, I’m suddenly not so sad. In all this mess of emotions, I’ve managed to un-bury gratitude. Gratitude for the success of the summer’s chemo, for amazing support given by friends and loved ones, for feeling well and excited about life most of the time. And gratitude trumps depression anytime.

Summer fun: are we there yet?

June 2, 2013

©2013 L Joyce CrokerSummer is playing footsie with us in SoCal. We have days of cool, overcast weather, then sudden bursts of 90° heat.

Along with the weather, my energy level has been sporadic. The first three cycles of chemo only robbed me of a couple of days of feeling fine. Three days of headaches, nausea and fatigue; doable and, judging by my latest scans, SO worth it.

Then cycles four and five came along. The fourth had me down and out for over a week; the fifth knocked me out for 18 days. Both stints included trips to the ER to rehydrate, the latter kept me in the hospital overnight. In between the excruciating headaches, sick stomach and energy level of a deceased slug, I found myself getting depressed. I began to lose perspective and imagine that weak, listless, chronically ill Joyce was somehow here to stay. This was unacceptable to me; I’ve always preferred the zippy, can-do version of myself.

Never one to suffer in silence, I complained to my oncologist before last Friday’s cycle six. She added preventative measures to my chemo regimen: zofran beginning day one of chemo to combat nausea, muscle relaxants for the violent, throbbing headaches and an extra B12 shot. The fatigue will probably return in a day or so. Now to concentrate on what these six cycles of chemo have accomplished. The new cancer at the base of my neck is gone; the primary tumor in my lower right lung greatly diminished, and seems to be dead or dormant. April 30th’s PET scan showed a possible new small tumor in my left lung, but the jury is still out and other doctors are being consulted.

Oh, and the sixth cycle is the last of this round of treatment. May 26th I celebrated my 30th month since diagnosis; not too shabby compared with the life expectancy of 12-18 months given when I was diagnosed November 26, 2010. Despite my whining about being stuck in bed for most of May, I never lose sight of my incredible luck to still be hanging out with my wonderful friends and family who have been so supportive throughout this journey.

There’s a saying I learned when I lived in less predictably temperate climes, “If you don’t like the weather, just wait a minute.”

And so I shall.

Third time’s a charm?

March 29, 2013

©2013 L Joyce Croker I celebrated my 28th month of survival since diagnosis on March 26, but I was feeling a bit less celebratory than usual. A recent chest x-ray, ordered to determine the cause of increasingly severe coughing fits, came back with less than happy results. It seems my original, primary tumor, the one we hoped was dead, has resumed growing. We’re back in the business of fighting two tumors again. And fight, we shall!

I’ll undergo my third cycle of the new chemo drugs tomorrow, then another PET and CT scan after April 5th to see if the new drugs are working. In an attempt to diminish the coughing, I’m back on a high dose of prednisone. Not only have the painful fits that were preventing me from sleeping calmed, I have more energy than I’ve had…since the last time I was on a regimen of 60mg of prednisone per day. I still have cancer, but I’m merrily completing projects normally too tedious to contemplate. Example: all last Sunday was spent de-winterizing Maeve’s plumbing system (who knew she was even winterized), draining and sterilizing water tanks, etc. I actually kind of understand the sewage system (yucky, but necessary), and just what all those crazy water valves are for. Prednisone lends not only energy, but clarity in deciphering the most impenetrable of RV manuals.

My wonderful friend Tony will take me to chemo tomorrow, which I hope to follow with a late lunch at my favorite red-sauce Italian spot, Palermo’s. Then, Joan and I get to enjoy another Easter weekend in LA and hope that tomorrow’s chemo; the third cycle of the third line of chemo I’ve undergone since diagnosis; is a charm.

maeve_DV_joanie 001

Last year of the sprint

March 10, 2013

©2013 L Joyce CrokerAnother cycle of chemo down, one to go until they scan me to see if new drugs are diminishing the new tumor in my remaining, right supraclavicular node. The day of and day after chemo aren’t a problem except for insomnia from steroids. Usually by Sunday the frenetic energy starts dispersing and I can once again spend the night sleeping.

On this beautiful spring day in SoCal, the drugs and their side effects seem well worth it. Having passed 27 months since diagnosis, I am tickled to still be here. We’ll celebrate my 59th birthday next weekend during another road trip in our RV, Maeve. Joan, the dogs and I venture to Death Valley for sightseeing, photography and togetherness in a stark, bright landscape already up in the 90s.

Here’s hoping for starry nights and peaceful mornings on the kick-off weekend of my last year of Sprinting Towards 60.

Another bend in the road

February 9, 2013

©2013 L Joyce CrokerJoan and I traveled to Maui for our biennial 2-week vacation there. Awaiting us were leaping whales, rain forests, umbrella festooned drinks and ocean warm enough to bask in (even in January). This time we were relaxed into puddles of coconut butter by the 3rd day; a record! Then, on the day we were to drive that long, tropical twist that is the road to Hana, I checked my email to discover one I’d missed from my boss, Miss Z. She had just accepted a more lucrative job and her last day would be a day after my return to the office. Half way to Hana, as Joan and I slurped shave ice at a roadside stand, Miss Z called on my cell to fill me in. I was left saddened, but certainly understanding her decision. Oh well, Joan and I had another 10 days left in Maui. We vowed to focus on the present, not life after return to reality.

I returned to work on Tuesday, 2/5 after an early morning PET scan and a scant 3 hours of sleep the night before. The piles of work awaiting me didn’t surprise me at all. What did surprise me: how bereft I felt visiting Miss Z’s empty office and realizing the brilliant little fireball occupying it would soon be gone. It’s the complex relationships that sneak up on you; my 5 1/4 year working relationship with Miss Z went through many highs and lows (often in the same day). It wasn’t always a sunny relationship, but I’m grateful for what I learned throughout its duration. I’m also grateful that Miss Z and I avoided killing each other in a whirl of red hair, sparks and thunder.

I thought Wednesday would be better. It wasn’t. I started out rested and calm, intent on plowing through accumulated work, attending back to back meetings and calming down my somewhat alarmed staff. Then the email from my oncologist, Dr. B, arrived with not-so-happy news. She asked me to come asap to discuss a new treatment plan. Darn! More chemo…and just when I was digging having hair again.

Dr. B set me up today with a new plan, and part of it is exciting. There’s a new drug called MetMAb, now in Phase III clinical trials. Dr. B will bring up my case with the lung tumor board next week. If they concur, she’ll help me apply for the trial. Since qualifying will take time, I’m to start 2 new chemo drugs next week, Alimta and Avastin, since my last chemo session on the old regimen resulted in an emergency 3 day hospital stay. Her comment on giving me more carboplatin/taxol, “the next time would be death.” We’re happy my oncologist would prefer not to kill me. Yet.

So, I’m feeling like a survivor. So far, in the last 2 weeks we survived: the road to Hana, the loss of someone I was very fond of and a few vials of blood (not on the same day), AND the prospect of yet more chemo. But, there’s hope too. And hope, along with a modicum of curiosity, is what keeps pulling us down this winding, aggravatingly beautiful road.

Still waiting and happy to do it!

December 31, 2012

Caspar Beach before the stormMy MRI results arrived just before we left for a road trip to Northern California. The good news: no sign of metastatic disease (AKA cancer). The iffier news: abnormalities in both cerebral hemispheres that I can’t pronounce. (Foci sounds like some kind of pasta. Make mine al dente!) I’ll return to Kaiser twice in the next 2 months: a consultation with a neurologist on the 1/11; a PET scan on the 2/5. More stuff to get through, nothing to keep us from our Christmas road trip.
After a visit with my mother and sister, then a pleasant visit with friends near the Anderson Valley, we drove to Caspar Beach and stopped to wait out a rainstorm in our RV, Maeve II, for a couple nights. We were cozy sleeping and lounging in Maeve, but I prefer a stronger spray than her shower provides. So, it was off to the campground showers for me.
The prospect of removing my clothes to wait in the freezing shower room for—hopefully—at least warm water produced far more anxiety than last week’s wait for MRI results. Of course, for the shower, I was naked and shivering at the time…and standing barefoot on a cold, gritty cement floor. Feeding 4 quarters into the coin-fed shower produced a long, blissful HOT shower; well worth the goosebumps. Sometimes waiting brings happy results, sometimes not. Either way, it seems the best way to get through the unpleasantness is to just get through it.
©2012 L Joyce Croker
After the storm, we saw quite a few rainbows. Some of them were in unexpected places we passed; in sea spray off crashing waves; in mist rising off fern dells. We were able to take the highway all the way down to San Luis Obispo, which a landslide near Big Sur had prevented on the drive up. As many times as we’ve been up and down Highway 1, it never bores us. We stopped to watch elephant seals in San Simeon; something that’s become an annual ritual. Once again, it was worth the wait. Most importantly; we’re still here. Waiting for the next thing down this road we’re traveling.
©2012 L Joyce Croker

Knockity, knockity, bang-BANG Zzzzz!

December 14, 2012

MRI ScannerMy oncologist ordered an MRI this week to determine what might be fluttering around in my little brain…and to ensure the week-long headache I suffered recently was merely due to the flu.

This afternoon I spent about 55 minutes in the MRI scanner. It’s kind of narrow inside, but I fit splendidly. My little mantra of “Calm-m-m (breathe in), Rela-a-x (breathe out)” seemed to keep claustrophobia at bay, and the cacophony wasn’t as bad as forewarned. My MRI soundtrack seemed to involve everything from Japanese monks playing wooden instruments; to midgets with jack hammers; to the worlds largest vibrator. (Unfortunately, the vibrations were limited to the back of my head.) I kept my eyes closed and enjoyed the hour off from reality.

Another adventure in the world of medical technology, and price of admission didn’t even require a co-payment!

Staying on the ride

November 27, 2012

Joyce and Joan on the Bus2 years ago today I woke up from a medical procedure to some very bad news: advanced lung cancer. I was 56 at the time, and really didn’t think I’d change much at that age. Wrong! Cancer changed me, and most of the changes are quite welcome.

As the initial shock and grief faded, the positive changes began. I realized that even if I outlived the 12-18 month life expectancy I was given, life is very short indeed. Far too short to not enjoy every minute I have left to the max; far too short not to make sure everyone I care for is made well aware of it. Also far too short to hang on to anger, bitterness and disappointment long beyond the date of inception.

2 years later, I’m feeling fine; much better than I did when I got the awful news. I can breathe deeply and laugh hard without falling into a fit of painful coughing. The soreness endured through radiation treatments is less than a memory, and I got through nearly all my chemo sessions without discomfort or drama. My hair has defiantly grown back, twice as curly and a little bit darker.

Will the cancer that still lurks in my right lung get worse? Will I undergo more chemotherapy? All that remains to be seen. I’ll have regular scans every few months, hope for the best and enjoy this E-ticket ride just as long as they let me stay on.

The right place

November 20, 2012

Sunset at Doheny State BeacjJoan and I drove our new RV down to Doheny State Beach for a quick getaway weekend. We took along the dogs, provisions and books to lounge with. The high points: watching dolphins playing just off shore as the sun slipped into the sea; Falling asleep to rain on the roof, waking to sound of waves and a gorgeous sunrise. Low point: Joan’s attempt to release rainwater from our awning resulting in an unwelcome cold bath. (I woke to sounds of a giant splash outside the door and howls.)

All in all, the perfect weekend spent in the right place with the right woman. Life is sweet!

Autumn Leaves

October 6, 2012

Fall woods. ©2012 L Joyce CrokerAfter a wonderful, chemo-free summer, I’ve learned I’ll be undergoing scans of some sort (PET or CT) about every three months. The results are in from my 9/25 PET scan. The good news: no new areas of avidity (glowing from intake of radioactive glucose injected before scan; one sign of cancer). The news I took as “uh oh!”: the area around the primary tumor is glowing a bit more; a ‘minimal’ SUV (Standardized Uptake Value) of 2.9 in March has increased to a ‘moderate’ 3.7. Mostly, the results are good; the evidence is that the cancer hasn’t spread. But perhaps the tumor I’d hoped was dead is merely dormant. Should I worry about this? Probably not. If worrying cured cancer, it would have been eradicated millennia ago.

Other than the “Should I be worried about this?” note I have in to my pulmonologist, my intention is to focus on enjoying my favorite season. Joan and I will be joined by friends at Santa Anita today where we’ll bet on long shots and enjoy gorgeous views and cooler Fall sunshine. Tomorrow we’ll put up the Halloween decorations and Monday will be the start of another challenging work week.

In other words, I’ll put one foot in front of the other and enjoy my metaphorical walk through these ever-changing woods.

Summer Song

September 15, 2012

Summer was never my favorite season. When I was a child, I hated the hot, tense summers spent at home, longing to return to the less volatile school environment. This year the unexpected upturn in my health changed all that. This year, I loved, loved, loved all things summer.

Since day job deadlines didn’t allow me to take a real summer vacation, weekends have been filled to the max: barbecues with friends, beach trips with my ladies; capped off by the grand finale of a 2 1/2 day deep sea fishing trip over Labor Day weekend. The time with friends gave a safe place to enjoy ourselves being just ourselves, the fishing trip ended up being nourishing in all ways. Landing a 50lb blue fin tuna after a 40 minute fight was not only emotionally rewarding; it offered pounds of protein to share among my friends. And the gift kept on giving: when offered fresh yellowtail and tuna, our Nisei friend Ellen brought over nori and sushi rice, leaving us with platefuls of nigiri and maki. This too, to be shared with friends.

The whole summer felt like a huge, unexpected gift. Precious weekends were never wasted on worrying about things beyond our control. We were having too good of a time laughing with our friends, eating grilled goodies and lounging in the heat. What else is summer for?

That winning feeling

July 22, 2012

Ever since I received the happy results of “no malignancy found” from my June 8 bronchoscopy, I’ve been walking around feeling like I’ve won the lottery. Rather than winning piles of cash, I’ve won time I didn’t know I was going to have. Just as lottery jackpots come in finite amounts, it seems to me that the time I have left feeling healthy and energetic is also limited. Unlike winning cash, one can’t gauge how much time one has left by checking an online bank statement. The balance listed on my imaginary “healthy time” statement may be followed by weeks, months or even years. Whatever that figure might be, I don’t want to just blow through it and be left with nothing to show.

In the spirit of this, I’ve made a list. Rather than a traditional “bucket” list, I call this my “what it takes to make me happy” list:

  1. Making a point of hanging with friends who emotionally reciprocate; with whom it’s safe to share and who choose to to share their feelings and experiences.
  2. Being kind, honest and helpful.
  3. Walking away emotionally from angry, negative people rather than trying to fix them.
  4. Learning about other cultures, both contemporary and historic.
  5. Being a fair, tactful but frank mentor to my staff.
  6. Documenting beauty; through writing, photography and art.
  7. Refusing to run away from uncomfortable feelings or memories, yet also refusing to become stuck in them.
  8. Learning to accept people as they are, not as I want them to be.
  9. Refraining from self-righteousness and judgmental thinking; focusing on how I can be better not how others should be better.
  10. Really listening.
  11. Slowing down enough to enjoy the details of every day living.
  12. Taking delight in my wife and family.
  13. Giving back to the universe.