Oh, For the Relief of Pain!: Everyday Magic, Day 977

When the anesthesiologist and nurse started me on Fentanyl last Wednesday, I told them I loved them both, and I meant it. By the end of the five days of hosting the gold heart of radioactive seeds in my right, the pain around in my eye and temple was so intense I was up most of the night before surgery. But once I got to the surgery prep room, told the good people around me of my nausea and pain, all manner of relief ensued: the nurse gave me a small cotton ball with peppermint oil for my nausea, then inserted some additional meds into my IV. The anesthesiologist gave me a Tylenol, then okayed the heavier narcotic which proved to miraculously fast-acting. In the body space where big pain resided, peace and joy rose over the land of my life within minutes.

All of this has me thinking a lot about the lengths I could go to to outrun pain, which are considerable. I can’t imagine slapping a kitten or stealing a car, but my mind along with the rest of me would toddle up desert mountains without water for pain relief. When I consider the times in my life when physical pain has ruled the roost — those three natural childbirths, a horrendous bout with an upper G.I. bleed once, and a history of dancing with migraines since I was a teenager — I know that when I’m in the grip of something painfully gripping, I would easily beg at the altar of pharmaceuticals for anything to take that pain away, and if that’s not possible, put me to sleep until it’s over. I have no doubt that had I given birth in a conventional hospital rather than a marvelous free-standing birthing center, I would have happily called out, “yes, please!” if an epidural was offered, forgetting my commitment for as healthy a birth as possible for the baby.

Then I consider the kind of chronic pain so many people I know live with — constant back agony, heart-numbing depression, myriad sharp pain throughout the body without rhyme or reason, and so many other physical and mental states equivalent to the ROUS (Rodents of Unusual Size) in The Princess Bride. There’s also the pain of the social body born of prejudices and biases: constant attacks on the self for not being white or straight or thin or whatever else enough. Lately, there’s the immense and needless pain of what is being done to thousands of migrant children, locked in cages without food or bedding, alone or crowded without enough ventilation or tenderness to survive on without incurring damage. We may not be experiencing such pain directly, but that’s the thing about pain: knowing it in enough intimacy often helps us tilt open the door of our own heart so that we can better see and respond to the pain of others.

My 12 days of surgery and migraine tussles suck of course, but perspective tells me it’s just a drop in the fuck-it bucket of what so many others are going through right now, whether it’s a six-year-old Guatemalan boy trying to keep a toddler fed on a concrete floor in Texas, a neighbor down the street carrying the shattered pieces of her grieving heart to the empty bed tonight, or someone who cuts me off in traffic because he was up most of the night with shoulder pain.

“Oh, for the relief of pain!” is a human chorus, coming back around at every turn if we look widely and listen deeply enough. What those of us harboring pain would do to relieve it is just as vast and complicated, and although this is surely what I always warned my students against — vague generalizations — I’m vaguely generalizing that a lot of pain in this world is fed by what we do or try to do to relieve the root of suffering. The opiate crisis, a rash of suicides, our collective issues with over-consumption that severely and negatively impact our climate and even our own survival — they all create ripples of pain, often without resolving the original pain or with replacing it with something even more vexing.

But that’s the thing: not all pain can be relieved. Some of the Turning Point writers I work with live with acute and constant pain from years of harsh chemotherapy or progressive neurological diseases. Some of my friends, surviving without beloved partners or parents or siblings, carry that vivid emptiness with them daily. Some of the people who brush past me in the food co-op or bank are hurting in an alphabet of pain most people can’t imagine.

All we can do is say it: I’m hurting. All we can do is ask: please help, or please just sit here with me cursing this embodied moment of sharp edges. All we can tell ourselves is, “Yup, it’s bad now, but I have hope it will be better tomorrow,” even if we’re repeating this refrain tomorrow. And all we can say is “I love you” to the world, even if temporarily disguised as a smiling nurse and anesthesiologist on the small island on what hurts surrounded by the bigger beauty of life.

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“God’s Got You, Baby”: Everyday Magic, Day 976

The lovely view from the porch where I’m spending most of my waking time.

That’s what Cynthia said as she led me back to the surgery prep room when I told her I was scared. “And don’t you worry because God made women stronger so we can get through anything.” Cynthia works for St. Luke’s hospital in Kansas City, and although I don’t know her official capacity, she wears a bright blue and white button that says “success coach.” Her words were cool water to me in the desert, pretty literally because I was parched from the no-water-before-surgery rule, and I was crazy scared.

Over the next few hours when I was prepped on Friday, she popped in the room every so often, teasing me about going to the restroom so often, an effective avoidant strategy for me and inconvenience for the medical personnel when I’m hooked up to IVs and monitors. But her words about how God’s got me helped me breathe just a bit more deeply.

Now I know all of us don’t resonate with the word “God,” and to some it’s more than off-putting, but I believe that something/someone/somehow has got us. Call it the higher self. Call it the life force. Call it the Great Spirit. Call it Jesus or Buddha or pure love or real life. For me, God works just fine, shorthand for “the force that through the flower drives the green fuse” (to quote Dylan Thomas) as well as for the unconditional, abiding love we’re capable of giving and receiving.

Since surgery, I’ve come to the oasis of Cynthia’s words to refresh myself even and especially when I’m in pain. When post-surgery head pain and nausea dissolve into hours of exhaustion and restlessness. When an excruciating migraine wakes me up at 3 p.m. and I need to wait until daybreak to take my meds for it because they have caffeine. When surprise nausea hits for a few minutes, and more often, I’m rushing to the bathroom for bouts of digestive hell. When the itchiness and drainage of this right eye drive me crazy. When the fatigue and confusion of my left eye, surely mourning the loss of her partner for these five days, disorients me. When, which means most of the time, my right eye burns. When there’s little I can do but color and listen to birdsong.

But then there is birdsong, color, and all the ways God’s got me. When my close friends and mother’s voice on the voices tell me I’m still me in this good life. When Judy and Ken carefully rescue a green caterpillar caught against the screen porch screen so it can go on to transform into whatever butterfly it is next. When I listen to Brandi Carlile’s “The Joke” or anything by Mary Chapin Carpenter on itunes. When Kelley shows up with soup that’s just what I need. When Ken and I laugh together at a scene in Northern Exposure for the hour each day I can watch something (I get too eye-tired after that). When I blessedly fall asleep on the porch to the tune of hummingbird buzz and the unseen birds on the left chatting up the unseen birds on the right. Whenever I look at the gorgeous bouquet of flowers my sister-in-law Karen and my nieces sent. There’s also texts full of heart emojis, our daughter’s voice on the phone, our son coming here each evening to patiently take our dog, a little freaked out that he can’t be near me, to my in-law’s home for the night, and mostly, there’s Ken, sick with some crazy virus himself but making me tea, sitting outside with me to take in the walls of green life, and talking with me when I otherwise would be talking myself up and down walls.

I can only hope others going through challenges, particularly those of you who are chronically ill in ways that keep unfolding in unpredictable or same-old-same-old ways, have such support holding you. At the least and the most, I wish that someone’s got you too (as in “gets” who you are and holds you), which makes me think of the ending of this Rainer Maria-Rilke poem (translated by Stephen Mitchell), “Autumn”:

We’re all falling. This hand here is falling.

And look at the other one. It’s in them all.

 

And yet there is Someone, whose hands

infinitely calm, holding up all this falling.

Wednesday, there’s both relief and another big passage ahead: the same surgery, but this time to remove the gold heart (as I’m thinking of it) full of radioactive seeds. I don’t know if I’ll see Cynthia, but I’ll wrap her words around me like a woven shawl of blues, greens, prayers, and wishes. As with everything, I don’t know what the aftermath of that surgery will be like, but I’m grateful to know God’s got me.

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Preparing to Be Unprepared and Other Quirks of Cancer: Everyday Magic, Day 975

Over udon soup and sushi at my favorite Japanese restaurant, Nomi said health challenges taught her this: “Prepare to be unprepared.” This pithy phrase speaks to just about everything I know about cancer treatment, which often feels like a too-fast or too-slow medical excursion in an unknown desert with a big bottle of water and no map.

As I get ready for surgery at high noon on Friday to implant a teeny-tiny gold bowl bearing radiation under my right eye, I realize how little I know what I’m preparing for.  I understand that the implant will be removed June 19th, then the tumor will dissolve over the coming months, but there’s so much I don’t know. I haven’t met anyone who has had this procedure or rare cancer (1 in 100,000), which gives me a dazed and daunting sense of reality. Will it feel wildly-uncomfortable or painful? Will I still be me while harboring a radioactive time machine for five days? Having a good imagination and a talent for anxiety easily sends me to the races, up the wall, and across the living room with questions.

At the same time, I know such questions are based on a false premise: that there are relevant answers to be had for the cost of obsession and insomnia. Having had a very popular cancer, breast cancer, 17 years ago, I should know better. Back then, I assured myself that I would simply do what my mother and aunt did: a lumpectomy with a side of radiation, then I would be home-free. Other people’s breast cancer stories gave me more varieties of what to expect. All of this worked like fake scaffolding: it seemed to lift me up to high windows to peer into the future, giving my trembling feet a false sense of solid ground. But what happened, like what happens for most of us (even when the treatment turns out to be what we expected), was totally different.

There’s nothing like embodied experience to show us the power of the real. My breast cancer was more advanced than I thought. Chemo, which I previously believed was something I would never ever do, turned out to be relatively okay, punctuated by bouts of annoying ailments and culminating into a lot of exhaustion at the end of six months of treatment. Surgeries were moment-by-moment adventures of surrender and recovery, fear and triumph, thirst and replenishment, sometimes with nausea, a bit of pain, or a rash (guess who turned out to be allergic to morphine?), but overall better than I expected. Over and over, I was dazzled by the body’s ability to heal, but even more so, by the many ways our friends and community fed and held our family (including the kids, all  young at the time) in the 14 months between the initial diagnosis and final surgery.

My previous experience doesn’t mean much when it comes to any predictability, except for this: I know even more than ever how much the way ahead is made of mystery and love, prayer and the magic of deep healing. I happily take in all the prayers coming my way, whether from Christians invoking Jesus, Jews singing the Mi Sheberach, or Buddhists chanting. I’m learning to avoid what will inflame worry (especially 2 a.m. research missions on the internet) and keep me from being present enough to be with all that comes.

I sit outside as much as possible and listen to music, including the continual birdsong and wind-in-trees rhythms of the here and now in this beautiful time. I write my intentions for this surgery. I’m vow to continue giving myself willingly and completely to the best abilities of my doctors and medical team. I stand on the back desk late at night with Ken’s hands on my shoulders as we thank the ancestors and land for all the guidance we find here. I laugh so hard while cleaning out my refrigerator with Anne because now it’s so beautiful. I do long-distance guided imagery with my energy healer. I pet the dog and look into his eyes. I visit my therapist a lot. I talk with my kids and best beloveds, ending most conversations with “I love you.”

And I let myself feel the fear when it swims or storms through, reminding myself of what my integrative physician, Neela Sandal, said to me yesterday, “Breathing is prayer.” Maybe that’s the best way I can prepare to be unprepared.

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Back at the Cancer Rodeo: Everyday Magic, Day 972

Self-Portrait With Rainbow & New Cancer Diagnosis

When I had breast cancer 17 years ago, I learned some things about resilience, the ability to bounce back. There’s nothing like being thrown off a bucking bronco to discover that yes, you can hit the ground, hard, and yes, you can hobble back to your feet and strength. There’s also nothing like community and all the love that made me upright again, then fed me homemade soup at regular intervals.

In 2002, I discovered I had breast cancer, lymph node involvement, and also the BRCA 1 genetic mutation — which increases the risk of breast cancer, ovarian cancer, and other cancers (even melanomas, like what I now have). There were three big surgeries, akin to holding onto a mechanical bull in the middle of a tornado,  surrendering to the anesthesia, and waking up to nausea and clear skies. There were also months of chemo, mounting one unbroken pony  after another with the certainty that I would be thrown off and I would throw up, and my white cells and mojo would plummet. I’d be overtaken by a numbing white sleeve of sleep at any moment interspersed with steroid-induced  closet re-organization at 3 a.m.  Ken, my family, friends, and big community love got me through, filled our refrigerator with blintzes and chocolate pudding for the six months of chemo, drove kids to and from piano lessons and hospital visits, brought me a TV and VCR (we had neither beforehand) so I could zone out on Steve Martin movies, and talked me through fear storms.

In the years since, I’ve understood that the cancer rodeo grabs hold of many of us as patients and just about all of us as people who love people with cancer. Having facilitated writing workshops for people with cancer and other serious illnesses at Turning Point in Kansas City for the last 17 years, I’ve also seen miraculous displays of grace: people who find the strength to open their hearts to life and make new meaning. From all of this, I’ve learned a few rodeo tricks and tips from the pros:

  • Generally, the hardest part is the excruciating limbo between “you have what sure seems like cancer” to a precise diagnosis and treatment plan.
  • New and mind-blowingly innovative medical treatments are coming to fruition all the time.
  • Energy healing and other forms of healing (whatever works for you) — acupuncture, massage, yoga, nutrition, walking with friends, laughing our asses off together — at best can spark startling revelations, and at worse, can dissolve incapacitating fear.
  • Denial is not a dirty word: it’s a necessary coping mechanism along with dimming the harsh lights of what’s likely ahead for us. We can’t live fully while carrying a backpack full of big rocks all the time.
  • Statistics are somewhat meaningless in the intimate space of being alive as a singular person connected to other people in the here and now. I’ve seen people with stage 4 cancers kvetching and sharing jokes 15 years out, and I’ve seen the opposite, too.
  • Cancer doesn’t change who we are; nor does treatment. I feared I wouldn’t still be myself on heavy doses of chemo, and yet I was totally still me, maybe even more so. Big dances with mortality reveal to us more of who we innately are, and that is a priceless gift of perspective.
  • There’s incredible good company at the cancer rodeo: people with the best senses of humor and get-up-and-go gumption because of close encounters with the life force. These are the best people you’ll ever meet or even be.
  • No one is immune to mortality.

Which leads me to now: some fuzzy vision in my right eye and a lot of blinking since March led me to an excellent ophthalmologist, Dr. Brown,  who, after two hours of shining lights into my eyes while having me look right or left and taking various images, had to tell me there was definitely cancer there. My stomach plummeted, and I felt the floor fall away. The rest of the day included talking with my wonderful integrative physician, Dr. Sandal, and my fantastic oncologist, Dr. Soule, in between a lot of phone calls, numbness, loss of appetite (a rare thing for me), occasional freak-outs at what wild animals I would have to ride and fear over if I would get to the other side intact. I also petted my cat a lot.

Yesterday, Ken, my soul brother Ravi, and I went on an inner space mission to Dr. Desai, a superb ocular oncologist at St. Luke’s Hospital. Did you know they can do an ultrasound of your eyeball? I know that along with how contrast dye of the eye produces clear images and that if you subtract the shortest man in the world from the tallest, you get Shaq O’Neal (“Who Wants to Be a Millionaire?” was booming in the waiting room). The extreme possibilities were extremely dire, and while I won’t know for completely sure if the rest of my body is clear until after the PET scan and brain MRI, when Dr. Desai said it was a treatable melanoma, I burst out crying in relief.

What’s next is a tiny gold button full of radioactive pellets planted behind my eye before being removed five days later. Then, aside from potential and probable long-term side-effects and vigilant monitoring for the spread of micro-melanomas, I’m done with this rodeo, and maybe with the cancer rodeo circuit for good…..or not, which is a big reason all this can be so scary.

The view from here

Now it’s time to ready myself for the rodeo and other metaphoric renderings of what’s ahead, knowing I will find a way through thanks to dedicated medical professionals, gifted healers, and especially my best-beloveds, particularly Ken, who gets to go with me yet again through a mess of tests and challenges. While I don’t own a pair of red cowgirl boots, I can barely ride a horse, and I can’t yodel to save my life, I can be brave enough to let all these people and procedures save my life. Then, probably sometime this summer, l’ll be on the other side with a more resilient spirit,  more grateful heart, and maybe a cowboy hat too.

Thank you for reading this and being with me at the start of all this.

 

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