Hope is stronger than fear, or stop me if you’ve heard this one before

I’ve blown it by not posting the past three days but I feel adjudicated by reading The Cuckoo’s Calling by Robert Galbraith (JK Rowling’s alias). I’m not finished but it’s an enjoyable read.  Lots of explanatory stuff, very little action. I’ve not felt great, which I’m trying to get over by Thanksgiving. Good and bad days are unpredictable, in spite of the painkillers, heated blankets, sunny days. Acupuncture helps a bit, but the current set-up makes it difficult to receive the amount of treatment needed to establish pain control.  With me it’s an evolving and complicated game of whack-a-mole for which consistency is critical. Alas, I’ll deal with what I have and hope for better days soon. I’ve got 5 acupuncture seeds in each ear and 3 on my right hand fingers to help with my breathing and skin toxicity. I need about 20 more for bone pain…

The biopsy results are in… my tumor tissue (from the collapsed left lung, no less) is PDL1 positive! Whether this is a result of chemo or Merck’s different assay (as opposed to Genentech’s), I hope it’s predictive for my response. A few more screening tests and with any luck at all I can start the trial.

The biopsy was a feat of efficiency, done at Ronald Reagan UCLA Hospital in Westwood (LA). From the valet to the cafeteria, I was impressed by the precision of the hospital’s well-oiled machinery. My nurse from Yorkshire (Leeds, specifically), England chatted cheerfully about her travels, set me up on the CT scanner bed, and injected a cocktail of morphine and Versed (midalozam) into my IV. I don’t know if the amount was insufficient or the lidocaine applied topically to my chest hadn’t taken effect, but I definitely felt the stab through my lung when it came. Yep, I surely did.  The resident who performed the procedure (a handsome young guy named Dr. McGraw) told me to take a breath, hold it, then plunged the giant needle in my chest (through the front, Pulp Fiction style). Once the thing was in he left it there, intermittently dropping tubes for samples. (Hubs says it’s much like drilling for core samples, though with more primitive implements) He clipped away as if he were pruning roses. I wanted him to start whistling but he didn’t. Then it was over. I was alert and ravenous, eating ancient flight pretzels from the bottom of my backpack, orange slice candy, whatever I could get my hands on. The doc came in to check on me, shoved a heated blanket roll under my back to keep me on my side and said an x-ray wouldn’t be done since, well, the lung was already collapsed. We chatted a bit about the difference between PD1 and PDL-1 inhibitors, what was edible at the cafeteria, then he wished me luck and for all I know went back to his office for Playstation.

Now that I’ve cleared that hurdle I’m faced with a bit of dilemma. A slot in the (Clovis) CO-1686 trial – the one I’ve been waiting over a year for – may open up in the next two weeks. It’s still in Phase 1 dose escalation, but it’s so close that I’d rather risk getting on now rather than continue waiting till it reaches Phase II.  As I’ve mentioned before, I believe my chances of response to that drug are much greater than to the Merck Anti-PD1 agent – which is the clinical trial I’m about to embark upon. I’m in a quandary, because starting the Merck trial would prevent me from the Clovis trial for now, and possibility of response is only 24%. BUT, response could be durable, lasting over a year. There are also scary side effects, whereas the Clovis drug has mild to none. The duration of response to CO-1686 is in the range of 6-10 months but it’s a blissful, if short period, I hear. I’m torn.

Hubs has a business trip to Nashville and I may join him. If I don’t make it to the end of the year at least I can say I went on one trip in 2013. For now I’ll focus on giving thanks for a good run, and remember my Dad, who passed away exactly 6 months ago on the 28th. I’ll light a candle for the fallen, say a prayer for the lost, and rally the universe for grace to blanket each one of us.  May we transcend the darkness, each in our own way.

Love to all.


Believe it if you need it

The garden chimes announced the wind after which the clouds burst open and let fall their payload. I look forward to my hill being clad in its green winter garment, studded with boulders, bejeweled by stars and the full moon. Fresh air is so rare here – this is the season to breathe. Of course it’s also the time for hot chocolate, movies, a good book, kitties to warm one’s toes.

The house is silent save the patter of raindrops.  I had a strange dream last night – Anthony Bourdain was in it (perhaps symbolizing the search for good food or anticipation of Thanksgiving)!  I skateboarded a ramp briefly and made a deep connection to a kind, talented, loving potter (ceramic artist). It was strangely wonderful and as I bask in its afterglow, I realize the joy of the dream allowed me to transcend my body’s physical pain.  The power of compassion and happiness in the dream force me to reconsider meditation as a way to overcome physical barriers.  I saw how crucial the exhilaration of physical sport and the peace imparted by artistic creativity is to my well-being and continued survival.  It is astonishing how inner joy affects us. The dream had mundane and nonsensical components as well, which I recall, but no matter – the lingering power of loving kindness lifts my heart.

In a dream, I was given a box of rain.

Wild Geese

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting-
over and over announcing your place
in the family of things.

Mary Oliver, Dream Work, Grove Atlantic Inc., 1986 & New and Selected Poems, Beacon Press, 1992.

Yesterday’s biopsy went well, which I’ll discuss later.

My uncle – my mom’s oldest brother – passed away last night, he was 86. Another one of those strange cases, where he’d been in the hospital for a brain hemorrhage, was successfully operated on, successfully engaged in physical and occupational therapy, and was ready to go home. My aunt and cousin’s wife had just left the hospital for a bite and were due to return when they received the call that my uncle’s heart gave out. He died during the period when no family was present, which seems to happen more often than not.

Thing is, he was a rambunctious guy who was still ambling about. He visited when my father was dying, and though he had a portable oxygen tank, he carried it around like his wallet, just another inconvenience but whatever. He played golf until recently, and was still cooking away – one of the things he did best. When I saw him in the hospital, without his Elvis glasses and gelled hair, I noticed how large his head was. He seemed so benign, but beneath that exterior was a highly disciplined, opinionated man with a good sense of humor and a severe intolerance for nonsense. I think, at the last moment, he decided he was old and tired, and he was Leaving Las Vegas, so to speak. My cousin is now officially an orphan, having lost both his sisters and parents in the past two years. At least he has a wife, daughter, and mother-in-law to whom he is close, and a slew of scattered cousins who share a mutual nuttiness and would bend over backwards to support him.

Hubs called my mom to see how she was doing and it was business as usual on her end. Filed under “successful coping mechanisms.”

There’s just no getting ready for death

A Meeting in A Part

In a dream I meet
my dead friend. He has,
I know, gone long and far,
and yet he is the same
for the dead are changeless.
They grow no older.
It is I who have changed,
grown strange to what I was.
Yet I, the changed one,
ask: “How you been?”
He grins and looks at me.
“I been eating peaches
off some mighty fine trees.”

Wendell Berry


…so I’m getting ready to continue living. In fact, as they slide me in and out of the CT scan machine, while I’m awake with a large needle going through my back to my collapsed lung to gather tissue, I’m going to concentrate on transcending the pain to that place of peach trees and quiet waters. I’m going to visualize my new life stand-up paddle boarding. I’m going to reach through the fog of twilight and believe whatever comes next will be meant to be and healing.

I hope there’s a decent place to get a milk shake afterwards, because I’ll have fasted for 13 hours by the time I recover. Universe, cross your fingers for me.

Remembering Carolyn

Tragic, untimely, unfair… yet elegant and full of love and grace. That’s my perception of Carolyn Top‘s passing, two years ago on November 18 in Groningen, The Netherlands. For someone I’ve never met, I felt such a closeness and attachment to her.

Carolyn Top

She found me through Vox, a now defunct blogging platform (from which I sadly didn’t transfer our PM’s), and we became quick friends. We both had Stage IV lung cancer, and followed similar treatment paths for awhile. We had much in common, but more than that, Carolyn’s lust for life was boundless and infectious. She was diagnosed at 29 and burned the candle of life at both ends for 3 years. She was married shortly after diagnosis, and was blessed with a husband who had the rare capacity to truly understand how short her life might be, how fraught with the trials of treatment and anguish, how every day was a bucket list day. The pace of activity and travel she maintained was astounding, and her husband had the wisdom to film many glorious times.  She was an active advocate in the lung cancer community in The Netherlands, and posted succinct and precise accounts of her daily life.  There is such sweetness and lightness in her voice…

I continue to feel  robbed, an unfortunate experience that repeats itself, and from which I don’t shy away. The sorrow of making what would be a life-long friendship and losing that person so soon is worth the beauty of the time we have. I don’t believe epistolary relationships are less valuable than ones with personal engagement. There’s a different intensity to friendships played out in correspondence, as many authors’ letters would suggest. Friendships borne out of hardship exhibit very little invention – it’s all longing and hope, dreams, sorrow, shared anguish and joy at small triumphs. As time passes, the hurt and sadness never really dull, the desire for more time lingers.

Love to you, sweet Carolyn.

One step closer

I’ve spent the entire day getting all my ducks in a row for Monday’s biopsy at UCLA. A zillion phone calls, a hundred pieces of the puzzle to fit together and even if every person I spoke to between Wednesday and today confirmed, “Done, and done”, I bet come Monday something will be missing. I hope it all works out in the end, even if that happens. Another baby step towards buying time and prolonging life.

Am I really prolonging life, or am I postponing death? It’s a permanent sticky thought in my brain’s bulletin board – Is death near? Should I be preparing for that instead of planning a trip to IKEA, a huge Thanksgiving dinner, a trip to Nashville, pre-Christmas craft weekends, trips for the New Year… ? Why plan death when you can plan life? Cough, cough, wheeze, ouch… Let’s go to Hawaii while I can still get out of bed…

Knowing I’m a bit closer to getting on therapy that will improve my quality of life does wonders for my morale. It makes me Happy, it makes me Hopeful, it makes me Grateful, it reminds me what the word Blessed means. It heightens the grief and longing I feel for those I’ve lost to lung cancer, but I fight in their honor. Every extra day, every joy, every breath I take I share with them in spirit.

My desk is piled high with bills, admin paperwork… in the end all that matters is what it is of ourselves we leave behind. I can’t leave a pile of money so I hope, like those I’ve lost, I can leave a vestige of compassion, knowledge, and a passion to find a cure for lung cancer and all the other underdog, orphaned, invisible diseases that plague humanity. It’s amazing that we went to the moon over 40 years ago, yet we haven’t achieved world peace, solved world hunger, found cures for the most common diseases, or found a way to stop destroying our planet and wasting its resources.

In my youth I wanted to change the world somehow but like most people, I didn’t stop to consider exactly what that would take and make it a life goal. Having cancer and being terminally ill has put me on the path of joining clinical trials – as much to prolong life as to contribute to medical knowledge. Yes, I’m willing to be experimented on – what have I got to lose? And I’ve mostly been rewarded. I urge everyone to keep an open mind toward clinical trials should they ever have a complex medical condition – whether it be arthritis, an ulcer, migraines, high blood pressure, diabetes, psychological issues, stress, sleep disorders… there are thousands of trials and the majority of them are good trials, aimed at moving us closer to cures and understanding.  While it’s true pharmaceutical companies are in the market to make money, most scientists who work for Big Pharma do what they do out of a desire to move science forward and help humanity (and maybe get a big house and nice car, but that’s par for anybody who works for a living).

So on Monday they’ll harvest cancerous tissue from my collapsed lung (I wish they’d just take the bastard out) and experiment on it. It’ll probably bite back, it’s so ornery, but the less of it is in my body, the better. Apparently I won’t even be knocked out for it, darn it! This weekend I’ll look over my Advance Directive, make sure my final wishes are known, and get my mind set for Monday’s procedure. I hope on Tuesday I’ll just have a sore spot and it’ll be business as usual. Think of me and wish me luck.