Lingering Loving Embrace of life…
Quietly harboring feelings of endless suffering and isolation within the confines of what’s left of his functioning brain, he weeps. I keep telling Darryl that he is not alone. He looks right through me with disbelief, politely nodding his head in agreement. In reality, he is. We come into this world alone and we leave alone. We are both in uncharted waters.
Time has marched on longer than Darryl had anticipated even though the initial prognosis was 9 months from diagnosis with treatment as a best-case scenario, which is where we sit squarely today.
At this point, Darryl is in the void of, ‘living longer than anyone around us had expected’. He said recently in a sort of morbid jest ‘people are probably wondering “Isn’t he dead yet?” No one wants to see someone they love to linger in suffering. It’s hard; it’s very hard to bear witness.
I’ve been feeling a call for weeks now to share an update from my perspective, being Darryl’s ‘other half’ on his journey with end-stage lung cancer. This urge now has a tone of urgency to it.
[March 1, 2018, 7:00AM while Darryl’s sister Kaylene was visiting, I spotted this auspicious rainbow that appeared to be resting on the mountain, across from the house.]
Darryl has been brutally honest in his own sharing from the very beginning but sadly he’s now lost most of his ability to share coherently except for brief luminous moments of lucidity. His last post was January 01, 2018.
So here’s my stammering attempt at continuing to share Darryl’s story on his behalf. With a glass of whiskey and Darryl tucked comfortably into his palliative bed with his nightly meds, I summon the courage to ground our present and most difficult reality into sobering words.
The tests and trials of this journey have consistently become more challenging from supporting my husband through the reality of his initial diagnosis, his palliative treatment and the aftermath to finding strength through humility by putting myself in his shoes. I ask myself how would I want to be treated if I were in his state? I feel a great sense of wanting to protect the dignity of this once vibrant, gracious, wise, witty, articulate, compassionate and highly intelligent man, now gravely ill, weak and vulnerable.
[February 25, 2018, starting to struggle to navigate his phone]
This is especially poignant at this time where he lingers in malaise, pain, confusion, frustration, sadness, and fear. He is also having moments of terror as he confronts leaving this corporeal world. Personally, I’d prefer to be hit by a truck while crossing the street than bear his burden.
Although Darryl confidently shared previously that he felt unafraid of dying, it’s now at this time, as his own death bangs loudest on the door that he’s not especially comforted by what he believed he believed about this great journey of crossing over to the other side of the veil. It’s incredulously immense courage he seeks now, to believe what he believes and to walk the talk.
“I can’t do this any longer.” “Why am I not dead yet?”
This restless in betwixt time metaphorically reminds me of my very first Fire Walk. You might imagine the anxiety that builds up before taking your first step onto flaming coals. I recall being mesmerized and in a trance-like state as I sat by this great bonfire whilst it burned slowly over several hours. All the while myself and the other participants were receiving a ‘teaching’ from the Fire Walk instructor about confronting the element of fire but equally ego, anger and fear.
The burning coals were eventually spread out into a large circle, emitting temperatures in excess of 1000 degrees. As I stood at the edge of the bed of embers with everyone else, the heat started to sizzle my exposed shins. For what felt like an eternity, I was paralyzed by of my fears. I watched as the experienced Fire Walker’s went first, gracefully floating across the bed of coals like it was a dream, sparks from each step rising to the dark sky.
You would think the questions racing through my head would be instinctual, flight or fight core brain stuff or even practical. Was this going to hurt or would I burn my feet? It was nothing like that. It was a type of full-body paralysis, time stood still, like a deer standing motionless in your headlights, as if my willpower and brain function were turned off.
Suddenly something self-governing kicked in, the action commenced and at that point, there was no turning back. It’s an autonomous commitment. I looked down and in disbelief saw my feet walking on the flaming coals. I felt a euphoria I’ve never experienced before and have never encountered since. The hot coals felt like crushed warm velvet beneath my feet. I was unaware of any heat sensations. The torment and fear I’d felt seconds before had vanished. I had transcended fear, for that moment. I wonder if crossing the threshold of life to death is something like that?
In the past two weeks or so, Darryl’s brain metastases have grown exponentially, making his life more difficult, filling his days and nights with confusion and paranoia. He has somewhat lucid moments but they are quickly effaced by cancer’s ambivalence and indifference. It’s a kind of cruel trickery where I am seduced into believing he’s back, he’s Darryl again only to lose him again and again as he retreats into a scramble of words, disconnected thoughts, and emotional upheaval that leave me on the edge of calling for help.
About a week before Darryl’s brain metastases began to grow, I finally completed a long goodbye love letter I have been trying to write since he wrote one to me months ago. Sharing it with him was very emotional for both of us. Not realizing at the time until this very moment that if I’d waited any longer, my letter would have been too late. He’s since tucked it away but can’t recall where or its contents.
[Feb 18, 2018, Reading my goodbye love note]
He has always had a simple request, with me by his side, to die peacefully at home. Don’t we all want that when we actually take the time to consider such things and perhaps we should before our backs are up against the wall?
Even though neither one of us are religious per say, we do have a strong faith in a higher power. In the past few months, we have started a comforting bedtime ritual of gentle affections and random but authentic declarations of love and affirmations of letting go and letting god, followed by reciting the old classic children’s bedtime prayer, “Now I lay me down to sleep, I pray the Lord my soul to keep…”
Several nights ago Darryl was unable to recite this simple comforting prayer with me, even when slowly repeated, trying to coax him on. He just made some moaning sounds in agreement, squeezed my hand and no sooner his nightly sedation stole away the last of his day's wakeful consciousness. Our nightly ritual left incomplete, I realized it has been as much for my comfort as his so I continued, whispering the prayer in his ear.
This great gift we are given at birth, the asset called time to live our lives can’t be valued without adding the important element of our life experiences, positive but also negative. Hopefully, in the span of our lifetime, we invest in personal work, resolutions, and forgiveness of those who trespassed against us but also and even more importantly healed our own intolerance, judgment and ventured into self-forgiveness. Otherwise, the negative stories can stockpile and sour our nature and all our relations.
When all our experiences are harmonized and accepted as simply our unique life, we can come into a balanced perspective, peace even. It’s a type of wisdom I propose. A great quality of life is not just a life of positive experiences; it’s about honing the rough edges to reveal and intimately get to know the diamond hidden within our authentic nature. “And remember, no matter where you go, there you are.” - Confucius.
It’s funny how a new year can often inspire us to make resolutions, plan to go at it with a renewed commitment to do and be better than before. But when faced with terminal illness, from what I have witnessed with Darryl, a most elegant teacher, you take this to the next level, trying to compensate for all the time that was wasted not realizing we have but one life to live.
When Darryl opted for palliative treatment, we both sincerely wanted to believe that we’d be somewhat satisfied as we faced what had been fated, Darryl’s untimely death by cancer, cleverly delayed for a time by chemotherapy. Another Confucius quote comes to mind: “We all have two lives. The second one starts when we realize that we only have one.”
[February 20, 2018 Wally, on watch]
When your husband begs you to put a gun to his head nearly every night, the delay or the more time he bargained for has now outworn it’s welcome and has become an agent of suffering. It’s entirely matched by sincere medical attempts to switch off as much discomfort as possible. Mitigating the connection to his physical body, his emotions and his mind involve forms of sedation, pain relief and a host of other alchemy for the garden of symptoms that arose from the treatment and those that continue to rear up from cancer that’s efficiently spreading everywhere.
This kind of biological storm is not for the faint of heart. This man has Danish heritage and I am certain a life as a Viking warrior at one time. This strong ancestral blood surges through his veins and it’s evident now more than ever. He has yet to reveal his soft underbelly and his complete vulnerability. Despite his desire to be liberated from life, his body continues to refuse to falter from this life. Yet, I hear his soul cries for Valhalla.
We both quietly feel a type of betrayal we’ve not got the energy to deeply inquire about at this time except that we do know that we can’t point our finger at anyone except ourselves for simply saying yes to slow cancer’s pace and slow his dying process. “Be careful what you wish for, it just might come true” - Archer. This strategy is more like playing Russian roulette with God. “An activity that is potentially very dangerous”.
Skip down the bumpy road from July to November 2017 where Darryl soldiered up to 6 cycles of chemotherapy (defiantly, because he said he would). Each treatment left Darryl feeling weaker, sicker and begging for a ‘normal day’, of which he’s yet to receive. Before his second cycle of chemotherapy, his lack of immunity left the door open to a scary visitor called Influenza A. That was almost the end but it was not yet his time.
[March 2, 2018, with Wally acting as an all-important arm rest]
The good doctor (the oncologist) always delivered the tests results with a strange positivity that left us both confused. The truth was the various test results were crystal clear if not irrelevant in the face of terminal disease. The only thing they can’t or won’t tell us is the quality of time remaining. They will offer a prognosis. It’s all about odds and averages. In reality, the results were simply more cancer and perhaps more time (the great quality quotient absent) for this dying business.
We were forewarned that this was terminal cancer from diagnoses and treatment options were simply to delay death without ever mentioning the cost involved, the cost of quality of life. Did we believe it was terminal? Yes and no. We both knew it deep in our bones before diagnosis but in our hearts, ever optimistic, we long for a different outcome.
Darryl and I had a bit of a funny conversation the other night when he was having one of his now rare lucid moments. We talked about comparing waiting to die to be like waiting for a baby to be born. Life and death happen but the ‘when’ is part of the great mystery of life unless we interfere, intervene, slow down or speed up the clock because we can.
Sometimes the results can be an intense labor and delivery resulting in a traumatic birth or conversely a lingering wasting journey to death. Either way, it’s like someone pushing or holding me back from that fiery bed of hot embers. I’d prefer the euphoria that comes from letting go and letting god but then again I am not sure I would walk the talk if I were the one facing my dying time with a terminal illness.
Darryl is a rare breed, an honorable gentleman. Ask anyone who truly knows him. He’s embraced his dying time with dignity for himself and unconditional love for his most cherished family and a host of close friends.
At this point, we have well and truly entered the realm of palliative home care. Our local Broadsound Coastal Care nurses are now regular and much-welcomed visitors, bringing a wide gamut of services, good cheer, solid wisdom and just about anything we could possibly need, even flowers, a package of ginger lollies and a lovely bloke to mow the lawns.
About 10 days ago a brand new hospital bed miraculously appeared within hours of our inquiry, when Darryl could no longer find supine comfort in a regular bed. Our lounge has been morphed into a reasonably comfortable bedroom framed by couches and poodles. To be honest, it’s a sobering view every morning. I realize it’s a deathbed, it’s potentially Darryl’s deathbed.
I’ve gone to great lengths to make it as cozy as possible. It’s as far from a sterile hospital room as I can make it, complete with our familiar bedding, our favorite radio stations while he’s awake and meditative and healing soothing music when resting because even the quiet can become a painful distraction.
At our little home alter I offer prayers and set aflame incense and candles. The room is scented with aromatherapy oils and glows with a deep orange from Himalayan salt lamps. The tropical heat and humidity ignore the calendar so I keep a small cyclone going with the aid of ceiling fans.
[Carmila, March 6, 2018, a bit lost and distant, with a new slight angle to how he holds his head.]
I may be crossing a line with sharing these details and if I offend anyone please know my sharing comes from a place of sincerity to an audience I believe deeply cares or at the very least has a vested interest for the sake of their own journey.
At this point, Darryl’s once inactive tiny brain metastases are now clearly growing like a parasite weed that can choke a tree to death. Darryl is now mostly sleeping. He eats and drinks very little but still enjoys Bec’s Rum on ginger ale and the ode cream bun, of course. At times, he’s unable to communicate beyond his basic needs.
In the last two weeks, he’s completely lost the ability to read, write or text. He can’t operate his computer, phone, iPad, or the remote for the TV. His words can suddenly be all switched up, sentences then don’t make sense and it’s most frustrating for all concerned. Belligerence soon shows up. To answer his pleas I’ve taken to clumsy attempts at intuitively reading his body language and what’s left of his functioning mind. At times, it’s exhausting, stressful and crazy-making.
There is a disturbing far off expression in his eyes. He does have rare moments of being mostly his old self. At this point, literally before my eyes every day he deteriorates a little more. I lose a slice of him every day. I collapse into grief unexpectedly as I go about mundane chores.
[Mate Rob, March 7, 2018]
Every now and then I need a kick up the bum to self-correct. Yesterday afternoon, spirit delivered. If any of you have been to our little house here in Carmila you will know that the laundry room doubles as our library. We have two huge floor-to-ceiling bookcases crammed with books and an embarrassingly large collection of oracles.
I heard a noise that came from the laundry room. I felt an alarm go off at a body-mind level and dashed to see what the noise was. My favorite oracle (the Aleister Crowley Tarot) lay on the laundry room floor neatly as if placed there by hand. Beside it a small ornament, one of the three wise monkeys Mizaru, covering his eyes. I got the hint, sat down with the little monkey and my cards and did a reading.
My message was clear. All the tears and quiet prayers from myself and his loved ones simply can’t lure Darryl back. I was indeed not at peace and sitting in a state of indolence, to be brief. Time for shifting and releasing some energy.
[Carmila, March 12, 6:00PM a strange bent pale rainbow appeared in the sky after the sun had gone done behind the range. ]
I keep finding myself revisiting a memory from when this journey got real. It’s from our second trip to Brisbane after Darryl was diagnosed. It was his first chemotherapy session. Despite being offered all the comforts of a big easy chair, Darryl took his palliative medicine standing up, straight and strong like the soldier he is and always will be at heart.
Pleading with him to sit and relax was pointless. Even the nurses tried. So, I sat for him, my beloved husband. I cried for him and I even ate his crackers and cheese for him. My expanded waistline is proof. He would give me his warm and reassuring smile and declare that everything was going to be OK. My brain would race from one corner of the universe to the other. What does that mean, “Everything was going to be OK”?
I’ve always considered myself to be a spiritual woman and my mind is a pretty open vessel but Darryl’s soothing statement defied the basic truth standing in front of me. Darryl, my immortal beloved, my everything, was dying of cancer from even before diagnoses when I would fret listening to his horrible gut wrenching cough.
At some point, that persistent cough and that chest infection that would never go away morphed into a sinister game of chance. Which cigarette was the one that tipped the scale? Which story of loss and grief, long suppressed tripped the alarm?
Only God knows the ‘why’. Us mortals can’t possibly weigh in on such things. Even as we attempt to solve the mystery we can’t help but judge or even cleverly discern, neither of which can make a difference.
Still, death by cancer is not what anyone would consciously choose. Death by cancer is also clearly not on Darryl’s conscious terms. Cancer has dashed out Darryl’s plans to complete his veteran years as a paramedic with QAS and so many desires and goals, especially sharing time with loved ones into old age and delving into his passion of fishing, shooting, and writing. Sadly cancer was also not part of our (rustic log cabin in the woods by a quiet lake) Canadian retirement plan.
I want to scream; “It’s not fair” not that it will help in any fashion.
[Francine & Wally are never far from his side.]
In the brutally honest truth of it, death by cancer is Darryl’s personal business and it’s between him and his maker. He even declared from the beginning that he can fight his own cells. Darryl’s journey has nothing to do with family, his friends, colleagues or me. Your business and mine are to be a neutral witness, maybe gain some wisdom, learn to give more love, the unconditional kind and accept every step and every decision Darryl has ever made and ever will make until he takes his last breath. Easily written, not so easily carried through.
He’s almost past the point of obsessing over whether he’s been enough in this world, especially to those he loves and adores. I can’t help but wonder if anyone of us will ever get to that awareness of being enough. Most of his remaining months of life have been dedicated to his reaching down deep inside his being and giving all he has left from the heart to those he loves. He still questions if he’s done, said or written enough, profoundly aware of his last chances.
It’s a scary but great and honorable privilege to witness someone’s dying time even if it’s a frightening reminder of everyone’s worst nightmare from either side of the fence. As Darryl would say “It’s poetry”.
We’ve entered a quiet phase where visitors are few, often brief and sometimes very emotional, deeply humble and appreciative. Without pretense, we are waiting for that moment when like stepping onto the burning embers, he steps out of this world and into the mystery. I whisper into his ear an old Newfoundlander saying that comes from my ancestry, “Darling, you are safe as if you are in God’s pocket”.
[Mate Rob, 6AM, March 7, 2018]
[Mate Ross, March 11, 2018]
The BCC nurses have the head Palliative nurse, the pharmacist, the GP and the oncologist all on speed dial. Magically they can get these busy professionals on the phone to efficiently tweak and recalculate Darryl’s constantly changing needs and medication on the fly. Although well intentioned, we can’t help but sometimes feel like his symptoms are being treated in an experimental fashion. It is the nature of palliative care so I am learning, resistance, on one hand, surrender on the other.
Well, there you have it. A bit of a long-winded update but mostly a sad reply to the many messages I receive asking ‘how is Darryl’ from those of you who are following along this path with us. Please know that your good prayers, your thoughtful gestures and your love is always deeply felt and appreciated. We are most sincerely grateful.
[Carmila sunrise, Feb 24, 2018]
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