2021 - Cancer; New Smyrna return

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They got the news all at once, hardly any prelude or perceived premonitory symptoms: Stage 4, mets as big as golf balls, a 5% chance of making it even 6 months.

They all wept, except Linda: she would have none of it. She would hear nothing of “the stats”, nothing that did not start and proceed with how she was gonna’ lick this thing. She took it on, on all levels, with all modalities – integrated, alternative, conventional, and spiritual.

She expressed guilt as well as outrage at the unfairness of the diagnosis, the unfairness of such an occurrence falling upon this organic earth mother hippie non-smoker non-drinker. But damn if she accepted it. Having manifested so much joy and positivity in her life, she was convinced that with this, too, she could manifest a cure, health, a long continuing life.

She would not allow use of “the C word”, any discussion of contingency plans, “final wishes” and arrangements. Instead, she meditated and visualized 3 hours a day, enunciating affirmation after affirmation, did detox diets and “HOCAT” treatments (a combination of electric field applications, magnetic treatment, ozone and heat). Paul gave her IV high-dose Vitamin C and nutritional boosters. She accepted injected mistletoe as well as FDA-just approved immunotherapy and conventional chemo… she tried anything and everything.

Initially, Linda’s approach, her vibe, and one or the other of her treatments clearly worked. Near miraculously, the intruder tissue shrank, and she maintained connection and activities she loved. But as one modality and then the others became less effective and then ineffective, her energy waned, her positivity dissipated. Although she never became pessimistic per se: she just began to let go, to just “be”.

She began watching 20 hours of “garbage TV” that Alia described as her “drug of escape”, which confounded Paul, a programming tape of trite trivialities pounding into her consciousness even while she was asleep. But when he heard her belly laugh with Alia, saw her innocent smile as she watched Ru Paul drag queens, he knew it was good. Or at least OK. It was her choice, and that’s what mattered.

As the entire mishmash of the disease and secondary complications took their toll, they headed back to New Smyrna Beach as a family one more time.

Expectedly, one supposes, these kinds of events become a screen upon which we project our thoughts, life hopes, and our fears.

There was one person who suggested family trauma, even abuse caused Linda’s illness or her “inability” to heal. Paul could identify with that from his own family and past, but no perceptible evidence hinted at that in Linda’s life. Linda once let out how she felt it might be pain from her relationship with Paul she could never completely let go, although she affirmed later and frequently, she didn’t mean it. Another time, perhaps sensing her family’s fervent passionate hope she would never not ever suffer, she expressed how it seemed to her they were trying to scoot her along.

As the illness went on, some of her circle of people let it be known they felt the chemo and conventional treatment “wore her down” and brought her to the end; or worse, that their toxicity and side effects were literally killing her.

Lots of beliefs, and most of them deep and passionately, often blindly held…

Friends’ and Linda’s own previously discovered testimonies of spontaneous cures, radical remissions, or miracle alternate treatments proved less encouraging to her with each passing week. With each dip in energy and functionality, with each side effect or symptom, she knew down deep and ever more consciously the likely reality. And for a while, she sought reassurance on every possible level.

When at Linda’s request Paul delved into several of the out-there treatments some of Linda’s intimates fervently advocated, the testimonials were mildly encouraging. Great. Anything was worth trying, and they had their own raft of positive hope and unfounded optimism. Then a few times he literally checked the names of the persons in the adverts saying how they’d been cured by this, that, or another of the alternative treatments. And when he crosschecked the names against state vial statistics data, death certificates, each of the unbelievable remissions wound up like all things in life, with the testifying person passing away anyway, and not too much later.

No one lives forever.

He did not tell Linda, but on her own she less and less found the commercialized meditation techniques helpful, or restful. Well-meaning people continued to send accounts to her with such frequency and occasional stridency that Linda had to stop reading their emails or texts. They bummed her out: why WASN’T she healing, why did she feel so crappy? The well-meaning urgings evoked guilt, failure to her own set of quasi-magical make-believe beliefs and failure to her community. After all, Linda was the one who always inspired, uplifted… Now look at her, she thought to herself and said…

She didn’t want reassurance, though, or even discussion of her barely and rarely let out worry and dismay. She just wanted to be held, held more than heard, a sense that Paul not just gave his all that she’d recover, but that he believed it, believed with all his “Paul-ness” she would recover. He went with it, seeking, letting the current of Linda and her panoply of loving friends and relatives buoy him, and carry them both along, allowing, praying for anything possible.

But it all wore her down: the treatments, alternative and conventional; contacts and good wishes from friends, keeping up a positive demeanor, whistling in the dark near the boneyard. Turned out the suggested the alternative treatments with the HOCAT exposed Linda to a resistant bacterium almost never seen in humans but found in water, causing septic shock and a kidney abscess that only IV antibiotics could touch. The self-injected mistletoe just caused sores.

Then, late in the year and despite those rejecting it was real, yes, Linda got Covid. Among those of her peers insisting vaccinations hurt and didn’t help, one person intimated the vaccine probably caused her cancer by eroding her immune system. Whatever.

One thing could not be denied or talked away: after her immunizations it was only a mild case, not even as bad as a flu. Otherwise, like the millions of others who got Covid at her age and with her immunosuppression, she would have been dead. They both knew people who’d become statistics.

Whatever.

The take-home is that she tried and did almost everything. By that and the length of time she lived, Linda defied the odds, exceeded the stats, lived longer and with less misery than almost anyone with her diagnosis. In that sense, she HAD a miraculous response.

She accepted the conventional and alternative treatments, everything reasonable, really, and beat it back for 10 months, by far and for quite a long time beating the odds: but at increasing physical and psychic cost. She fought for more time even as she sensed that maybe just maybe she couldn’t win this one.

Paul was no stranger to alternative or integrated medicine, a core of his career-long practice and learning. Still, whatever his pre-formed if to him well founded conclusions about the limitations of many alternatives (as well as western medicine), Linda’s illness drove him to reconsider everything, anything.

With a dear friend’s help, he first investigated specialty clinics and practices who championed at the highest prices imaginable various usually multiple alternative treatments, all, every one of them touting their great success. Most located outside US or other regulatory reach, for reasons that became ever more obvious. Then there were the alternative healing gurus, touting one approach, paradigm, remedy or another, with a similar lexicon and bevy of astounding success stories.

Perhaps unsurprising, when searched about online, patients who desperately sought out and paid for miracle healings recounted horror stories. Accepting whatever the outlandish and never-validated proprietary treatments, patient families recounted how the centers lied to their faces about the good results, patients literally dying within days of the false “good news” while the center billed ahead for the next cycle of their treatments. Centers then by these accounts still selectively utilized earlier intake patient interviews and statements to convey in their advertising that that patient experienced truly miraculous effects. Non-disclosure contracts signed before a patient could start treatment precluded much legal or public response, and the clinics carried on.

Paul did not let any of that deter him from trying for Linda almost all the ballyhoo treatments anyway, all that weren’t high-risk or potentially toxic, or that weren’t so ungodly expensive that, according to many patients online, they bankrupted themselves and often their family to pay in advance for the alleged treatments proclaimed to cure them. Thankfully, with help he found or could himself administer locally most of the individual treatments the centers and gurus advised. And he did, with Linda’s encouragement at first, then her tacit consent, and finally with resignation.

IV Vitamin C and antioxidant, nutritional infusions
Detox diet and herbs
Acupuncture
HOCAT
Hyperthermia
Injected mistletoe
Medicinal Mushrooms, two varieties
Meditation and headgear-facilitated visualizations
Healing message/affirmation audio tapes
Juicing
Yogic chants, New Age music

Said again for emphasis, by the length of time she lived, Linda defied the odds, exceeded the stats, lived longer and with less misery than almost anyone with her diagnosis. In that sense, she HAD a miraculous response.

For that reason, I would conditionally recommend these alternative or supplemental treatments to anyone with cancer. My take home was if someone is going to fight it, a cancer, do it all. Like Linda, do everything affordable and not clearly dangerous. Then maybe, like Linda, there can be more time, less misery, and who knows for some, a cure.

It happens.

But nobody lives forever, and at some point, it is preparing for the departure that becomes by far the most important, and the most uplifting.

After Thanksgiving, letting in the indicators of her disease course and outcome, the distressing if expected and less-than-feared side effects from treatment, Linda wanted a break.

As much as Linda and New Smyrna were forever melded from their devolving disintegrating marriage there 20 years earlier, she had her let go of all that, but with little remaining affinity for that place. On one return, it engendered pain, or at least discomfort. But at this point in her disease, she wanted away, not anywhere, she wanted an away but known and rooted place.

Paul’s urging, yes, but she chose to go back to New Smyrna, to the same beachfront condo they lived in for four months before getting their own little house in 1996. Linda returned with Alia, Jared, and Paul. Her brother and her SIL, Noah from Dubai: over three weeks they also returned.

Ice Cream without restraint, exorbitant (but not really) meals out, climbing the Archaeological Turtle Mound, Eldora on Mosquito Lagoon, both a mile from their former home when living there but that they’d never done. Cape Kennedy, oh yes, Cape Kennedy – not one, not two, but four night launches illuminated the dark sky and their balcony with eye-smarting brilliance. Payloads, aspirations, so many dreams ascending into the heavens, Linda squealed in delight with each liftoff, cell phone camera on record, embracing the audacity of ascents into the skies.

Paul felt then and afterward the cosmic symbolism and symmetry: she was readying and even delighting in launches into the freedom of the skies and limitless space… readying it turned out for her own liftoff.

Noah’s urging for contingency planning, his executive white-board style outlining of realities on their condo picture window, Linda bemused but psychically understanding, beginning acceptance – they regrouped, coalesced, loved, and prepared.