You try to enjoy each day while dealing with the side effects of treatment.
You search the net for cures to the disease and the side effects of the treatment.
You connect with your Facebook drug group for answers your docs don’t have… and you find them.
You somehow deal with the unknown duration of temporarily successful treatment and that eventual unscheduled train wreck that you know is coming down the tracks when the drugs stop working.
You can’t stop thinking about the one (ONE) woman in the world who has been “cured” for five years now with a new treatment.
You hope you live long enough to benefit from a cure if they discover one.
You just smile when people say, “You can beat this.”
You grow your hair while you still can.
Be vigilant? Ignore it? Embrace it? Accept it? Share it? Keep it to yourself?
You’re grateful for the opportunities you’ve been given in the past and you’re proud that, in your life, you’ve reached for the ring.
It’s time to turn inward. The phase of crazy physical activity is over. It’s time to process what has been, enjoy the now, and create memories with your kids and grandkids that they will carry with them throughout their lives.
You hope you’ve made a difference. You want to still.
You hope you won’t be forgotten. You hope what people remember won’t be your craziness.
On this planet, spring follows winter. But for us humans, we get one spring. In terminal cancer, there’s enduring the treatment and keeping the disease at bay but there’s no healing from it or looking forward to returning to your old life. Even with all my willpower, I can’t train myself to hike Burma Road on Mt. Diablo with its 2700 feet of gain over four miles. I used to do it weekly with a twenty-pound pack. There are plans and goals that will never be fulfilled or attained, grandchildren you will not see graduate high school, let alone be married. You will be a great-grandmother to children you will never meet.
There are trails that won’t see your footprints again. And those you’ve hungered to trod that never will. I always hiked and experienced where I was, as if I may never be there again. Thank God.
I find I can’t plant for spring. Only nurture what I have. And dispose of the confining detritus of too much-accumulated stuff.
Clean house less. Toss more. Drive less. Amazon more. Shower less. Nap more. Hike less. Write more. More phone calls and visits with friends. Laugh more. Fewer thoughts about money. Clearing clutter. Making way for manifesting new creations.
Buy expensive jewelry, flowers, pet the dog, travel.
Embrace the splendid mystery that somehow we can manifest the “strings” of energy making up our physical bodies that see, hear, feel, hug, cry, taste, touch, and process our experience here on this tiny speck of a planet spinning in a sea of dark, empty death.
Aren’t we lucky?
PS. Even though I have an incurable, fatal illness my doc, who does have patients dying, impatiently says, “You’re not dying.” Refusing to fall into my despair, my friend, Val, bluntly reminds me when I’m feeling down that, “You’re not dying today.” It’s true that, while none of us has an expiration date, nobody gets off this bus alive. Humans don’t do well with uncertainty. Buddhists spend most of their time trying to accept impermanence. I deal with it by being open about it.
So, I promised I’d write about my out-patient experience at John Muir Behavioral Health (the out-patient program for folks at their wit’s end).
Having only been incarcerated 48 hours, I was released from my seventy-two hour hold in the looney bin at noon on Thanksgiving Day (paroled for good behavior, I guess). Pre-insanity, I had planned a nice afternoon Thanksgiving repast properly Covid distanced with our neighbors on the back deck. Rick had the turkey already roasting. I was grateful for my freedom and the decreased despair provided by the quickly prescribed anti-depressant, which was the whole reason I went willingly. But, I still felt fragile. In the passenger seat of the car, I felt like I’d just gotten off of a backpack trip: cars and people were moving too fast, colors were too bright, noises were too loud. In forty-eight hours I’d lost my desensitization to the jarring pace of the modern world. I’d been floating on a cloud wrapped in eiderdown for forty-eight hours and I came to like it. I came to make it a baseline, a default. I came to call it home. Now, stepping through my front door, I looked around: shelves full of stuff I could live without, a mess of magazines on the coffee table, Abby the Dog jumping on me. In the kitchen, veggies were chopped for stuffing, potatoes peeled for mashed potatoes, and my office – I couldn’t even open the door to that chaos. Dinner was to be at two, so I did what I’d always done – I jumped into gear, but very mindful of the serenity I was leaving behind.
As it turned out, our neighbor was having her own emergency in the ER. Having also been released at noon, she, too, jumped into gear and assembled her part of the dinner. At four o’clock the four of us plopped into our respective chairs on the back deck like ball players siding into home base and took a deep breath and a moment of thanks. “Yep, it’s a 2020 Thanksgiving,” said Brian.
On Friday I waited, expecting a call to set up my entry into the out-patient program. Too late, I noticed I missed the call. They were closed for the weekend and I found myself teary and anxious. I’d have to sign up on Monday when I thought I’d be starting on Monday. I found myself hungering for a program that I didn’t even know anything about. Later, I discovered that it wasn’t necessarily the program I hungered for, but the human connection I’d found at the in-patient program. The isolation of Covid made everything worse.
On Saturday we had our young friends, Banning and Regina, over for a socially distanced lunch on the back deck. At the mention of my 5150, Banning lowered his head and looked over his glasses at me. Unlike Banning’s experience as a fifteen year old, unlawfully locked up for eleven months in the largest insurance fraud case in the United States, my stay was nurturing and helpful. I missed the spare contained environment where all I could see of the outside world were the green crowns of trees through the top windows, the lower windows, frosted, emitting a soft glow. All the surfaces were smooth, no door knobs, nothing to hang yourself by, where all our needs were met and we could just focus on us.
I yearned to arrive at some steady state that I could live with or at least know what to expect. Or maybe I needed to learn to ride the waves, to accept that the waves ARE my new steady state. With nothing to do that weekend and the misery still going on with my feet and eyes, I wrote to God in my journal:
God, Godforce, Great Mystery: What am I to do? I’m lost without my feet and eyes. And I’m tired and teary.
My pen answered: This is a time for that.
Me: OK. I guess I have no choice but to accept it.
MY pen: Yes.
Me: Why? What good is this?
My pen: It just is.
Me: My ego likes reasons and answers and timelines and schedules and certainty.
My pen: This is not that place.
Me: So, I’m in this alternate plane while the rest of the world spins productively?
My Pen: Yes.
Me: I feel a rift between me and my friends that can hike and do and see. I feel separate and more than a little bit less than.
My pen: It’s OK. It’s just your ego. Your ego thinks it’s running the show. It is not.
Me: The world tells me otherwise. The world honors doing and accomplishing.
My pen: Let that go. It’s an illusion.
Me: It feels like a convincing illusion.
My pen: It is just an illusion.
Me: So how do I navigate this realm?
My pen: Write.
Me: OK. You said so. I am left with little choice, anyway. Do you mind if I share this conversation?
My pen: No. I don’t mind. More people need to know this. This is your job.
So, getting orders from The Great Somewhere, here I am.
On Tuesday I got up, showered, and got dressed, all within an hour. This was a first during Covid. I shimmied into a top I hadn’t worn in the nine months of Covid and wrapped a pretty scarf around my neck. It was cold outside so I grabbed my coral colored down jacket, as opposed to the black backpacking puffy. I had somewhere to go – somewhere to BE, at 8:30. It felt great.
At the door of the big box-shaped building next to the green lawns of a golf course, I got a new mask, gelled up, and had my temp scanned. Upstairs there were papers to fill out, cards to show, and signatures to make. Then I was off downstairs to the big meeting room where things were already in motion. The sign on the door read, “Cafeteria.” Opening the door, I quickly scanned the room. It was full of chairs all six feet apart lined up like little soldiers on parade. Later, I would count forty of them. They were all filled except for one chair, front and center. Years ago I would have wilted at the conspicuousness of interrupting a big room full of people and then having to sit in front of everyone. More than wilted. The room would have spun like a Maytag washing machine on spin cycle and, seeing a blur, I would only want to disappear. On this day I welcomed the human energy in the room and was excited to join them, even if at one time they all wanted to off themselves.
Written on a white board in cerulean felt pen was the schedule for the day. Basically, forty-five minutes to one-and-a-quarter-hour sessions with therapists, a chaplain, and an art therapist. In these sessions I learned about Cognitive Behavioral Therapy, Dialectical Behavioral Therapy, Cognitive Distortions, Metacognition, Acceptance and Commitment Therapy, neuroscience of addiction, coping vs fixing – a lot of fancy words asking you to look at your life differently. At 11:15 all forty of us would break off into smaller groups in separate rooms and meet with a therapist to talk about what was going on with each of us on a more personal level. There was also time for a fifteen minute one-on-one session with an assigned therapist.
Having had a ton of therapy, I was already aware of a lot of these suggestions and devices to massage my brain in the direction I wanted it to go. But the hands raised and answers given in response to group brainstorming were validating, helpful, and made it feel like we were all soldiers in an army fighting a common battle, even though we could not be more diverse.
And even though we spent five hours a day together, it was hard to really get to know anyone. There was the gambler, the fighter, the anorexic, the wife who, angry at her husband, slashed her own arm, addicts of all sorts, and the eighteen year old with his hair in his face and a sewing machine leg. Due to Covid we were instructed to stay six feet apart. Break-apart sessions in the big room, were loud and noisy with our six-foot distanced shareings. I mentioned to my therapist in a one-on-one session that I had a blog that was pretty honest and raw. She responded that “we don’t want that here. It might trigger someone.” I was astounded. How does one heal without learning new ways to respond to triggers? How can we comfort that scared child within if we’re unaware of their distress? How do we connect without showing our wounds, our vulnerability?
Being depressed, no one was excited to talk. We introduced ourselves daily (new people came, others graduated) with an answer to a question posed by one of the therapists, like “what’s your favorite pizza topping,” and your name. Two weeks into the program the art therapist suggested we make some kind of a sound followed with our name. She modeled it by making a funny squeaking noise to which no one laughed. Then, in unison, everyone was to mimic the sound. Wrong approach. A room full of forty depressed, suicidal people mostly responded with “eh” as their sound. I decided to liven it up and, when my turn came, I held up both my arms, swayed them left to right overhead, and sang over the crowd, “Aaaaaaaa Ooooo,” like Freddie Mercury at a Queen concert. Yep. I had my own stadium following along. The therapist looked at me with wide eyed wonder. I grinned back like Jack Nicholson.
After a week of this, from 8:30 until 1:30, with no lunch but fifteen minute breaks between sessions where the smokers were the only ones who chatted together in the cold, windy parking lot, I sensed that this program was simply providing techniques to keep you out of crisis – to keep you alive. I was not seeing a lot of progress in my fellow inmates. I mentioned to my therapist that there was no deep work being done. She said, “No, this isn’t that. Everyone is supposed to have their own private therapist, as well.” This program was all designed to manage thoughts and behavior, not the why that makes you respond to life the way you do. After a week of listening in our small group to an obviously very smart and accomplished middle-aged woman struggle, overwhelmed, and paralyzed by stacks of ever accumulating papers on her kitchen counter and hearing the therapist suggest for the umpteenth time that she file just five pieces a day, I’d had it. I raised my hand. “I don’t know, but I think this has nothing to do with the papers.” I was afraid I had upset the apple cart, overstepped my bounds, and maybe even violated a HIPPA statute. Sitting six feet to my left, she swiveled her bowed head, looked directly into my eyes, and said, “I think you’re right.” Hallelujah! We were making progress.
I learned that in addition to the help I found by being in the presence of others, their contributions, and the daily classes, I gained meaning, purpose, and a lightness of being by bringing my true wild and natural self to the party. I disregarded the therapists warning to not trigger anyone. I spoke of my past, my childhood, how I had conquered old destructive thoughts and behaviors. The therapist in our small group leaned forward and implored, “How did you get this way?”
“I took a leap. I prepared myself to die, because that‘s how doing the new behaviors felt, and I found that I didn’t. In fact, I felt better.” People started coming up to me during the breaks saying how everything I said helped them. Women would talk about their over-bearing mothers, their verbally abusive husbands. Men would talk about child abuse from their abusive drug addicted or alcoholic parents. I had the same unsolicited response; “Drop kick them.” Pretty soon all I had to do was kick my foot out and they knew my answer. One gal crumpled up a letter she’d written to her narcissistic ex and literally drop kicked it across the room.
On my last day, after ignoring, “You’ll have time to do that in your small group,” I addressed the whole class with a heartfelt thank you for being part of my journey and a good bye. I read a letter to my small group:
The situation that brought me here was in response to a medical condition magnified in my mind by the powerlessness, hopelessness, and despair I felt as a child.
While each of our journeys is unique and special, I think they all require immense courage. You’ve shown your courage just by being here. This work requires feeling feelings you think you might die from. I encourage each of you to gather more courage, either from an armful of stars gathered from a clear night sky or form it from the mud of the riverbank. However you do it, open that door to that dark room. Bring the light of your heart. Shine it on the remnant memories of your past. Clean it out, even if you need a pick and a shovel, or even a blow torch. Shine your light into the dark corners and find in each corner, a child of a different age who’s been cowering behind the trauma. Kneel down. Open your arms and gather each of them to your heart and promise that you will be their advocate… always. They will inspire your strength. They won’t believe you at first until you show them with your actions. Gradually, with their building trust, the cloak of depression you’ve felt safe in will lift and they will show you the lightness of joy and ways to find connection and fulfillment. With your heart for a compass and your soul for a pair of wings, hold their hands and follow their dancing footsteps down a new sparkling path paved with diamonds. It’s time. You were born for this.
The biggest lesson learned: We need each other. We need to be open to hearing each other’s stories and courageous enough to tell our own. More people need to know this.
PS. Yesterday’s PET Scan showed “no clear evidence of cancer.” It may still be lurking and it may very well return but for now, this is good news. I don’t know what this means as far as drug regimens which are still kicking my ass but right now I’m happy to share the good news.
In the 1800’s, from the floor of Yosemite Valley on a windy day, John Muir witnessed a rare natural phenomenon happening to 2,435-foot Yosemite Falls:
“while I watched the Upper Fall from the shelter of a big pine tree, it was suddenly arrested in its descent at a point about half-way down, and was neither blown upward nor driven aside, but simply held stationary in mid-air… while I counted one hundred and ninety. All this time the ordinary amount of water was coming over the cliff and accumulating in the air…, the whole standing still, resting on the invisible arm of the North Wind.” – John Muir.
A dark-haired woman in light blue scrubs led me by the arm into the mental hospital. I’d just heard the clank of the metal gate locking shut. We passed through a courtyard garden. Resigned and sad, I looked down at the part in her hair. We came to a room where I passed the Covid check-in questions, got my temperature scanned, and received a new mask. I was used to being strong. Just being in this place confirmed my fragility – like a delicate vase, possibly broken beyond repair.
Into the elevator we went up to the second floor to an office-like room where she asked me all kinds of questions like part nurse, part therapist. When asked how I thought of killing myself, I easily repeated the car-off-a-cliff scenario that I’d told my oncologist. For extra measure, I added, “Maybe I’d just go sleep in the snow and die.” I’d snow camped before with proper gear and know that without proper gear, snow camping can be incompatible with life. “My eyes are blurry and sting. I can hardly even see.” Removing my shoes to show my feet, “My feet are red and burn. I’m a photographer and hiker and I can hardly see and I can hardly walk.” While I sat there in the small office relating my life story, between sobbing and finishing one of the Big Macs my husband had dropped off along with clean underwear, another woman in scrubs came in and gently pulled my long scarf off my neck. “I’m not going to hang myself with my scarf,” I growled between bites. “Shoe laces, too, please.” Kripes, I thought. I’ve entered the cuckoo’s nest.
My net bag full of my backpacking essentials was taken. I was told that I couldn’t keep my cancer pills, that they’d dispense them from their pharmacy. “NO!!! You can’t get them just anywhere. They’re only available at four specialty pharmacies in the country and they’re keeping me alive!” After checking them out, they agreed to dispense them as directed.
Escorted passed the nurse’s station and down the short hallway to my room, I noticed the large beautiful canvas photographs of redwood trees against the pale blue walls. I would learn that they were canvas to prevent broken glass from smashed pictures. And there were no door knobs, just indentations in the door to open them. “She doesn’t want to be with Chantal. She’s pretty talkative right now,” I overheard one of the staff say. “That would drive me crazy,” I replied. On retrospect, that was an interesting comment from someone committed to the looney bin. I already am, I thought. Later I learned that Chantal, a large, sweet, early twenties, black girl, was there to have her bipolar medication adjusted under supervision.
My room was spare, clean, and calm: thin beige cotton blankets on a simple bed, a nightstand, a chair, high windows, and the same bare, pale blue walls. I put my paper bag of clean underwear and foot cream on the chair. Finally, a bag lady, I thought. I was ushered into the day room, another clean, spare, light blue space with windows I could only peer out of on my tip toes. It had the feel of a cafeteria – linoleum, small tables and chairs, and a big screen TV in one corner with about six others gathered around engrossed in a cooking show. They were masked and wearing sweats or night clothes. It was only 6:30 pm. They talked and laughed amongst themselves. No one said hi. I was last to get dinner from the portable steam table – meatloaf, mashed potatoes, some soft overcooked veggies. I took my tray to a table and attempted to pull out a chair. I had to set my tray down on the table in order to move it with all my might. Hmm, I thought. They can’t be thrown.
Having eaten the Big Mac and fries, I wasn’t really hungry. It was clear from their talk and laughter that the other inmates had been there awhile and were familiar with each other. Sitting in the middle of the room, I felt invisible. I’d been told there was a group meeting at seven in the day room. I was looking forward to meeting my new tribe and seeing what this program had to offer.
As a small child I would suddenly drop to the floor and sob in the days following my brother’s beatings by my father. My mother’s response to the beatings was to shut the windows “so the neighbors don’t hear.” My mother’s only response to my upset was a threat, “If you don’t straighten up we’re going to have to take you to a head shrinker.” I was about three years old. A head shrinker! I thought. They’re going to shrink my head?!. I stopped crying. I realized then and there that my reaction was a problem. There would be no change in the family dynamics, no comfort. This was my normal and I’d have to deal with it. Now, in the looney bin, I welcomed whatever help they had to give.
At seven a male therapist entered the room and also got engrossed in the cooking show. “We can stop it,” someone said. “No. It looks like you’re really into it. I’ll just check in with everyone individually.” Because of the blaring TV, I couldn’t overhear the personal conversations with the therapist. I didn’t know how they could even hear each other. He came to me last, introduced himself and my trapped three-year-old said I was fine. I could see the meeting agenda on the paper flip board on an easel and waited in the blaring room for it to begin. After a while, I asked the man if we were going to have a program. He said he was just checking in with everyone. Irritated, I left and returned to lay on my bed in my room and continue sobbing.
A small trim woman in street clothes came in, introduced herself as one of the therapists, and sat on the floor, her back against the wall, her legs outstretched, and asked how I was doing. “I can’t stop crying.” I didn’t know how being warehoused in this isolated pale blue bubble was going to help me. They’d promised me a visit with a psychiatrist the following day to get my coveted antidepressant. That was all I really cared about.
Again, I told my story. I started to hear from myself how remarkable my life had been. I was a college graduate in bacteriology. I’d worked for years as a licensed Clinical Laboratory Scientist. I was a published author. I created, ran, and guided for my backpacking company, Sierra Spirit, that REI had contracted with to run their Yosemite Program. I’d hiked the John Muir Trail, the Sierra High Route, a lot of the High Sierra from the Emigrant Wilderness in the north to the Golden Trout Wilderness in the south, Paria Canyon in the southwest, 200 miles of Spain’s Camino de Santiago, the Wind River Range in Wyoming, plus a bit in Norway. I’d overcome an eating disorder and other destructive coping mechanisms developed from growing up in a dysfunctional family. I was still married to my college sweetheart, had good relationships with my two adult children, and had a treasure trove of friends. I was beginning to sound like a rock star. The therapist was fascinated. But, here I was in The Looney Bin. I complained that I was looking forward to the group meeting that never happened. She said, “Yeah. I saw that. That wasn’t right. I’ll talk to him.” She asked if I wanted a sedative to sleep. I usually sleep well but, this being a different place and all, I thought, what the heck.
I woke when it was still dark as seen through the high windows in my room. The shower in my room wouldn’t warm up so I gave up. I was uncertain how to operate it. No knobs to hang yourself from.. None of the other patients were up. Breakfast wasn’t until eight. Tears were again gathering in my eyes. They were changing shift at the nurses’ stationI asked for a piece of paper to write on. Might as well journal and document this experience, I thought. There was a plastic jar of pens on the counter. They were like clear Bic pens only they were flexible. Nope, couldn’t stab anyone with one of these. I asked for a cup of tea (you had to ask for everything) and sat at a small white built-in shelf of a desk and drew a picture and sobbed.
Breakfast at eight was from the portable steam table again – scrambled eggs, bacon, French Toast with syrup, fruit, etc. Our group meeting was at nine. I was called in and out of the group numerous times to meet with a social worker, nurse, therapist, psychiatrist practitioner, bunch of people. I told my story to anyone who would listen. I found it helped. AND I got my antidepressant.
We had art therapy in the afternoon. People had started to talk to me by now and share their stories. While coloring with Crayons, I asked Mike, a thin, boyish thirty-one year old construction worker, “Why did you drink three, fifths of vodka a day?” His answer, “Work. I worked three jobs and then came home and drank.” I left it at that. No, I thought, that’s not why. People work long hours and don’t do that. Hell, I had at that age. I didn’t pursue it further and no one else did either. He also recounted how they had to give him a blood replacement of a couple units to dilute out the alcohol in his blood stream in order to save his life. Later I learned of his horrific childhood and I understood why.
There were other stories, as well. It was another gal’s second time drying out after a painful divorce. She wore a long flannel night gown all day and held her hair up in a wrap. She spoke of times when she attended gala events in full make-up with her wealthy husband. One older gentleman, probably my age, showed up in the afternoon. I sat across from him during art. I asked his story. He replied that his beautiful thirty-five year old son had died in a surfing accident and he couldn’t stop drinking even when his wife gave him an ultimatum. I reached across the table and took his hand. I asked another gal what brought her here. She just replied, “Life,” and got up and walked away.
I told how I ended up there. Incredulous, they all queried, “So you didn’t plan to come here? And the police weren’t involved?” “No!” I explained, “I went to a doctor’s appointment and she wouldn’t let me go home.”
During the classes/meetings therapists gave presentations on not drinking, managing stress, controlling what you can. There was no deep therapy. No healing of the primal wound of abandonment and abuse, pain and loss. Upon my intake, I told of my blog and how it is real and raw. “Well, you won’t want to bring that up here. We don’t want to trigger anyone.” No wonder people relapse, I thought. No cleaning out the carbuncle of catastrophe so that one can make positive life choices. Addressing our triggers is how we grow, I thought. If we live without challenges, we stagnate in our dysfunction. I spoke of ACA, Adult Children of Alcoholics. The therapist knew nothing of it. I later learned that this was merely a drying out place, a detox station, where folks would later move on to thirty-day in-patient treatment programs. Hopefully, they would deal with their deep issues there.
Sometime before lunch I stopped crying. Interacting with my fellow inmates and the staff, even though all masked, was the best medicine in this near-year of Covid isolation.
Wednesday evening I was at the pharmacy window (just like in the movies) getting my evening dose of Xeloda, the cancer drug. I felt renewed, talkative, like life was worth living again. I shared my blog site with the pharmacy tech and then the nurse’s station staff wanted to see, too. They were all pulling up my blog site on their screens. “If anything, read, I am Made From,” I instructed.
I am Made From
I am from swimming, competitive swimming Alone but on a team. Chlorine in my veins. From swimming because my mother couldn’t. Breaking ice on the deck in winter for an hour before school And for two hours after, after homework, Because I was also an A student Because my parents weren’t.
I am from the salt of the ocean Where I swam free With waves up my nose And crunchy salty hair when it dried And sand everywhere else.
I am from a single white sunbeam That pierced the hard cold glass of the big front picture window in the living room Where I lay enveloped in warm radiant love Lying on the waxed hard wood floor Behind the big old overstuffed chair.
I am from Leave it to Beaver, Father Knows Best, Mousketeers, Moose and Squirrel, the Twilight Zone. The Flintstones, John Wayne, the Addams Family, All in the Family. Laugh-In. The Ed Sullivan Show, the Beatles, the Stones, Bob Dylan, A Land Called Hanalei, The smell of napalm in the morning, and “One giant leap for mankind.”
I am from sudden loud voices. Freezing like a rabbit. From sudden movements and belts not used for pants and “I’m ashamed of you.”
I am from the mud of the riverbank Where I created myself anew from what was left And grew tall and strong like the Sierra Nevada still growing, Held in the bony arms of my adopted parents, Mother Maclure and Father Lyell, mountains in the Yosemite High Country And became acquainted with my relatives up and down the 400 mile range.
I am from the tiny flame that first ignites the tinder, The roar of the wind as it penetrates the forest only to caress me And surprise me with its gentleness as I sway in my hammock. I am from lightening and hail and the wildflowers they oversee.
I need to remind myself that I am from the blood red on the sides of Golden Trout As they swim up the crisp clear stream and Flounder in the sharp gravel beside gentle grassy banks Laying their eggs And moving on through the land As if they knew how to live their life so perfectly.
See my pictures. See me! I’ve made a remarkable life. I felt like a child at show and tell. Nothing was handed to me. I apprehended my life out of the aether and formed it from the mud of the riverbank, slapping it and shaping it around Spirit. It’s glowed gently and steadily in the darkness, even lighting the way for others. But lately, I’ve made a pass over the waterfall and darkness is all around. My inner glow is not enough. Now I need to be held up by others as I endure this journey, like the North Wind held Yosemite Falls in mid-air for over three minutes. I need to call friends. I need to visit. I need Covid OVER.
The next morning was Thanksgiving. I was ready to go home. Being on a seventy-two hour hold, there was some question as to whether they’d release me. Tears welled as I started feeling trapped again. I was to host a casual Thanksgiving dinner with our neighbors on the back deck that afternoon. Having called Rick on one of the unit’s phones, I knew that the turkey was already roasting.
I was released at noon but not before one of the nurses asked me if I’d like to volunteer at an eating disorder clinic. “I would love to,” I replied. “It would bring meaning to my life.”
The experience was a reset. My falling waters had been supported and held by all the caregivers in this place, like the North Wind held Yosemite Falls, and were gently placed back in the manageable river below.
Next, I would attend three weeks of outpatient classes and group therapy. Next blog.
In my last blog I alluded to my visit to a psyche ward just before Thanksgiving. I’ve been meaning to write about it but even with cancer, life is busy. So here I am.
I always know when my doc is approaching. I hear the rapid no nonsense click, click, click of her heels. Holding my chart against her forehead, she burst through the door mouthing a humungous “FUUUUCK!” I learned in previous appointments that her sons have asked her to clean up her language. I love my doc. She’s tall, slim, bright, beautiful, and passionate. As for me, she can yell FUCK about my cancer progression anytime.
On the smoky Sunday morning of September 20, I logged into the John Muir Health Portal and read the results of my September 16th PET scan. It had been smoky since 12,000 lightning strikes lit 650 wildfires a month before on August 16th and ended up burning four percent of the state of California. Some 11 am mornings looked like 5 pm on the Winter Solstice. Sometimes the sky was so orange, I felt like I was on another planet. I’d been aching more since around that time and fearful of my own internal natural disaster. On the PET scan report I saw the word “progression” and my cancer marker was elevated, too. Damn. I knew that meant that the IBrance drug had stopped working and the tumors were growing like wildfire again.
She immediately rolled into gear. “Well, we got six months out of the IBrance.” My head sank. So, we’re now counting my longevity in six month increments instead of decades, I thought. But she quickly moved on with a new plan, “We’re going to put you on Xeloda. But, unlike IBrance, it’s a chemo.” IBrance is a targeted drug – only kills cells with a CDK 4-6 receptor on its membrane. Don’t ask. You’d need a recent degree in biochemistry to understand. Just know that it only targets certain cells, not every cell, like chemo.
Chemo drugs work to inhibit DNA replication. Cancer cells have run-away replication but they’re also fragile. In the presence of Xeloda, every time they try to divide, they die. But a lot of other cells replicate, too. Think fingernails, GI track lining, skin. The package insert reads that those dispensing it should only touch the pills double-gloved. Four of these would go into my mouth twice a day. “I’ll lose my hair?” No.” Well, at least that.
You can’t just buy these cancer drugs at CVS. They come from one of four specialty pharmacies in the country. Because these drugs are so lifesaving, you’d think they’d be right on it and ship them ASAP. No. You gotta be a squeaky wheel. On the phone, “What is keeping my medication from being shipped (from Ohio!)?” Well, it’s marked urgent here on someone’s desk,” – marked urgent only due to me nagging them on a previous call. “Whose desk is it on? Where are they? Can you bring this to their attention and ship it out? My life depends on these.” I’ve learned to advocate for myself.
The pills arrived in my mailbox October first and a new set of side effects began: GI disturbances, aches, tiredness, burning eyes and blurry vision. While losing my fingerprints, I was trying mightily to maintain possession of my core identity. On October ninth, the soles of my feet burned when they hit the floor upon arising from bed. My doc had warned me of possible “hand and foot syndrome” where the soles of your feet and the palms of your hands can burn with redness, peel, crack, and bleed. I thought it odd that a drug could target such specific body parts. It turns out that the pressure of standing and walking on your feet and gripping things with your hands produces a lot of pressure on weakened capillaries and the chemo poison leaks out into the tissues causing injury and inflammation. Also, on chemo, you don’t heal well. Small boo-boos from gardening can take three weeks to close over. I’m a hiker. I guess that was a good thing because I had developed hard, thick, hiker calluses to slough off during the peeling rather than soft, pink, city skin. But, meanwhile, walking at all grew to feel like stepping on hot razor blades.
The other most bothersome side effect was burning eyes and blurry vision, to the point I could barely see. Apparently, a lot of chemo drugs create dry eyes and this can create a film over the eyes so that the world looks like it is being viewed through wax paper.
My Xeloda Facebook group has been invaluable for camaraderie and support and for solutions to problems that my doc merely shrugs at. With them, I’ve discovered 40% Urea Cream to moisturize my hands and feet and freezer gel socks to ease the burning and inflammation.
I remember being in an in-person support group meeting twenty years ago. Mostly I expressed my annoyance at this cosmic “mistake,” complaining that I had things to do and places to go and that this “bump in the road” was a pain in the ass. “I want what she’s having,” one responded. Then suddenly a scarf-swaddled head poked in through the door asking if this was the stage four support group. The room went instantly silent, heads dropped, hearts stopped, and eyes widened. This unsuspecting lady was the embodiment of what we all feared the most. The hospital group moderator motioned her down the hall and we all breathed a deep sigh of relief, except for the lingering fear that we might someday be her.
My home became littered with all the different brands of eye drops that the Facebook group suggested. And it sounded like at least one of them solved everyone’s problem, except for mine. So, toward the end of my two weeks on (one week off) Xeloda regimen, I was probably legally blind, only minimally able to walk, aching all over, believing this would be my life until the drug finally failed, and I’d die. Between that and the prospect of not seeing my kids for Thanksgiving due to Covid, I’d been crying for days. I was falling over the waterfall again.
On the Monday before Thanksgiving, a nurse called from the specialty pharmacy in Ohio where I’d been getting the Xeloda. Unaccustomed to getting a nurse’s call from a pharmacy, I was intrigued. She asked about side effects. I rattled them off. She had no solutions. “Do you want to speak with a pharmacist?” “No. Been there done that.” The pharmacist had told me in a previous call that cancer treatment was a balance: A balance between killing the cancer and killing me. Kinda like the counterbalance in my backyard of feeding the birds without feeding the rats, I thought. Then, she asked about my mood and I fell apart. “I can’t stop crying.” “Are you thinking of hurting yourself?” I knew I was dangling on the lip of the waterfall, if not already flailing among the thundering mists. “Well, I’ve thought of driving my car off a cliff. I’m not going to do it but it would solve a lot of my problems.” I knew what I was saying, I knew she’d have to act on it. I knew I wanted an anti-depressant and my Xeloda dose lowered, as my doc had previously suggested to my protests, “I don’t want to croak!” Later, I’d checked with my Facebook group and seen that a lot of gals had their doses lowered to make the side effects tolerable and it was still effective against the cancer. I had a doctor’s appointment for a bone growth shot the next day. I thought I’d address these things then. The nurse asked, “Is it ok if I tell your doctor how you feel?’ Resigned, I replied, “Yes.”
The next day was the Tuesday before Thanksgiving. My appointment was for 10:30. I arrived on time at the cancer center parking lot, sat in the driver’s seat, and sobbed: sobbed for the pain and frustration of the side effects I had to trade for longevity, sobbed for missing Thanksgiving with family, sobbed for my shortened life, and my new unchosen life. Now, late for my appointment, my phone rang. It was my doc’s office. I figured they were wondering where I was. “Hello?” “Karen, we had a call from a nurse, and we’re concerned.” “I’m in the parking lot here for my Xgeva shot and I can’t stop crying.” “Well, come on in.”
With my nose running behind my Covid mask and tears wetting my face, I dragged myself through the thick double glass doors. Twenty years ago I hated this place. I hated that we had to have a whole center devoted to cancer. “What were we doing to ourselves and the planet that we needed a place like this?” But, I loved the people inside and still do. Nurse Nancy, who always set me in the infusion room with the big Half Dome picture, is still there twenty years later.
Bypassing the waiting area, they ushered my sorry ass into an exam room. I sat in the plastic chair, put my head against the wall and wailed. Through the sobs, I took my shoes and socks off to show the peeling, cherry-red soles of my feet. I thought, This is going to be my life until I die. Keeping my eyes closed eased the burning a bit. The click, click, click of my doctor’s heels signaled her arrival. Plopping on the rolling stool and leaning in, “Karen, what’s wrong!?” she implored. “I can’t see and I can’t walk. I’m a photographer, sewer, hiker, and writer and I can’t see and I can’t walk!” More wails. “I just want to reduce my dose and get an antidepressant.” “The nurse said you were thinking of hurting yourself.” Actually, my idea was to stop the hurt. “Have you thought how you’d do it?” Without skipping a beat, “I was thinking of driving my car off a cliff.” She bolted up straight, eyes wide. “I’m not going to do it but it crossed my mind.”
By now, leaning in again, masked but ungloved, she was softly stroking my exposed ankle and lower leg crossed over the other knee. We’d known each other eleven years, where I’d come bouncing in for my biannual check up with news and pictures of my latest adventures. I was a success story. I wanted her to go home feeling good that at least one of her patients was leading a robust post-cancer life. I was proud of having endured my one year of treatment twenty years ago – what I’d undergone to survive and even thrive. I’d shown my ponytail to bald cancer patients at the hospital where I worked as a Clinical Lab Scientist to show that there was hair and hope after treatment. “With all the new discoveries, if you’re going to get cancer, this is a good time to get it.”
What an idiot I was. I wasn’t feeling it at all that Tuesday. Through the sobs and believing I knew the solution, I kept saying, “I just need a dose reduction and an antidepressant.” Her reply, “We’re not even going there until you get stable.” I thought my requests were the path to stability. Irritated and defeated at being denied, I bowed my head and studied my options. I couldn’t find any. More sobs. Then I heard, “The fastest way to get you an antidepressant is to go to the ER.” I weighed that versus waiting for weeks over the holidays for a shrink appointment. “Besides, I can’t let you go home with suicidal ideation.” ”I’m not going to do it. I was just thinking about it.” “Normal people don’t have those thoughts.” It was clear that I was not going to win this battle and if I could get an antidepressant sooner by going to the ER, well then, ok. The young buff, black, sweet and gentle-as-can-be RN, who usually gives me my shots and takes my blood pressure, escorted me to the ER on the opposite side of the hospital. Covid and all, I took his arm. My face still wet, we laughed along the way, “I’m really not crazy. I’m just having a rough time.” “I know, Miss Karen.”
Onto a gurney I flopped and began sobbing again. Then I noticed they placed a uniformed guard at my door. Uh oh. I’m captive. I was raised in captivity and maybe that’s why I’m most comfortable without a roof, or even a tent, or trail. With nothing to do and knowing that unless you have a heart condition, Emergency Rooms treat you like anything but an emergency, I pulled up my RN friend, Mindy’s, contact info on my phone and poked the mobile number. “You’re not going to believe this…” “Karen, they’re going to put you on a seventy-two-hour hold.” “NO!!” “Yes, they can do that and probably will.” Oh, no. Rick thinks I just went for my shot. I was angry at him because I was unable to talk about the depth of my despair with him. No, it doesn’t make sense but there you have it. So I asked Mindy to call him and let him know where I was and that I was fine.
They changed guards a few times. One older woman guard told me to trust in Jesus. Two male guards spoke together just outside my room talking about some “fucked up” situation somewhere. The doc came and went and came in again five hours after my admission, all the time I’m waiting for an antidepressant. She said, “I spoke with your doc and I’m placing you on a 72 hour hold and sending you by ambulance to John Muir Behavioral Health. It’s a nice place.” Motioning to the guard, “Would they tackle me if I bolted?” “We’d probably call the police.”
Well, fuck. I just came for a shot and now I need a change of clothes and toiletries. I hadn’t eaten since a meager breakfast. I texted Rick and my pre-loaded net bag for backpacking showed up complete with a headlamp, lighter, and a bunch of other stuff I’d never see as an in-patient in a mental hospital, along with two Big Macs, fries, a soda, and my cancer meds.
Now dark, the ambulance finally arrived for the half-mile ($4,000) drive to the psyche hospital. Two kids, a girl and a guy who looked to be high school age, wheeled me out to the ambulance and got me onto their gurney where, with straps and a metal click, they LOCKED ME IN. The restriction set in and I was momentarily terrified. I’m used to rambling through mountains off-trail wherever I want to go, not restrained and locked to a gurney. My guide and good friend, Banning, had been wrongly committed to a mental institution for eleven months at age fifteen for insurance fraud. The horror of his stories ran wild through my mind.
Again, resigned to my fate, curious about the possibility of an interesting experience (who else gets locked up in a psyche ward?), and still holding onto the promise of an antidepressant, I relaxed and told the kids that I really wasn’t crazy. I pulled up a picture on my phone of me from summer before last where I’m backpacking up Lucy’s Foot Pass in Kings Canyon. “Do you know anything about the John Muir Trail?” “Sure! What do you want to know? Here’s a picture of my sister and me on Glen Pass.” He spoke of his magical visit to Evolution Basin and of his dream to hike the whole 220 mile trail. From my immobilized position in the back of an ambulance, I said, “Do it.” I gave him my email and by then it was time to unload me behind bars. I heard the clank of the metal gate. My waters were about to change.
It turned out to be a good thing. I needed a time out. Stay tuned for next blog post.
It was a few years ago that I acquired a renewed fascination with waterfalls. Sure, they are beautiful and powerful and gravid with the promise of spring and hope, born of the pure white snows on the sides of mountains high above. But, this was different. It was as if they had a message, a story, a warning, an insight to tell. I’d stare at them that spring: Bridalveil, Yosemite Falls, Vernal, and Nevada. What were they trying to tell me? I was amazed that contented roiling creeks and rivers swollen to the top of their banks with smooth waves over boulders with just a hint of froth, could find themselves unsuspectedly flung over a cliff, blown to bits of mist with no recognition of their previous selves and, only by some miracle, be recollected into the creek below to ramble on as before, only more aerated. The 318 foot vertical column of mist between the lip of Vernal Falls and the pool below where it gathers itself together, has no resemblance to the river above from whence it came. The mist, taunting like a benevolent ghost with an eerie message, rose and swirled and swayed with the breeze and baptized us on the granite path below with its own body. Standing drenched in the misty downpour, I’d stare up at the column of white and wonder: What are you trying to tell me?
Then I heard it. I was guiding a group of New Jersey high school kids with their teacher, my fellow guide, Diego and another guide Banning. We’d met in Yosemite Valley a few days before, bussed up to Glacier Point, and started our trek along Illilouette Creek to camp upstream. We needed to cross the creek the next morning. It was early June and the creek was running high. I never ever wanted to lose a client, especially a kid, in a stream crossing and have suffered numb feet and legs as I escorted many a client on an icy stream wade. We managed to get everyone safely across on some big downed logs bridging the two sides of the creek and headed to Little Yosemite Valley. The kids were enthralled with nature and their teacher posed thought-provoking philosophical questions to be answered and explored around the flickering light of the evening campfire. I found myself in wonder, wishing I’d had a teacher like this. The kids were sharp and insightful, way beyond my maturity at their age.
The next day we packed up and strode to the entrance of Little Yosemite Valley where the Merced River tumbles through a chute under a wooden bridge and spews itself over the ledge. We dropped our packs and went to the fenced in viewing area where we could look down and watch the mist fall 594 feet to the creek below. Again I asked, what are you trying to tell me?
At the lip of Vernal Falls, sitting in the sun, we have lunch. I note the height of the creek in relation to the metal fence discouraging people from straying unprotected into the swift current. The water has crept beyond the fence. The water is intruding into the demarked safe zone. I’ve been known to sit on a rock upstream from the fall and soak my feet there.
In the fall when the river is low, I’ve seen people hop the fence and walk the slick granite lip barefoot, stepping over the channels of water flowing over the edge. Knowing the risk, I turn my head or take pictures to document the possible catastrophe. Every now and then people will wade upstream from the falls and get swept over to their death. The last time I know of this happening, a woman and two young men, all in their twenties, were posing on a boulder in the creek for a picture. One slipped in. The other two tried to save her and all three were swept over the fall. To the horror of powerless onlookers, the last two were seen going over the lip holding onto each other. Such a tragedy to be swallowed whole by such terrible beauty.
After lunch we are happily rejuvenated and with great pride and satisfaction of nearing the completion of a successful foray into the Yosemite backcountry, we saunter down the steps and trough the drenching mist, delighted with vivid rainbows at our feet. Past the mist we gather, all smiles. I look back up at the waterfall and I clearly hear her message. Why couldn’t I hear it before? I look at these bright and sometimes awkward teens, some abandoned by their wealthy parents to a well-appointed private boarding school. I know the incidence of teen suicide. I know I have to convey the message. With the roar of the fall in the background, I yell to my drenched students, “Look at this waterfall. It rambles along as a contented, unsuspecting river above. It laughs and burbles. It’s going somewhere safe within its banks. And suddenly, it is flung over a cliff, broken to bits, turned upside down and every which way. It doesn’t even recognize itself. By some absolute miracle it is gathered back together to continues its journey. So when you have difficult times in your lives, and you will, remember the lesson of the waterfall and how even when torn apart on a molecular level, it somehow returns peacefully to its original form, a river on its journey home to the sea.” By now some kids have flung their wet bodies onto me in deep hugs and some are crying. Somehow, I’ve unwittingly become the messenger of the waterfall and spoken with words her message where it needed to be heard.
At the end of that backpack season REI did not renew their contract with my guiding company and, devastated that my soul’s work was pulled out from under me, I knew that the message was meant for me, as well. I gathered my own broken bits back into its river and embraced long-distance backpacking, something I could never do while running a company with sixteen guides who ran twenty-eight trips a summer. Hiking locally with good friends in the winter and exploring new areas off-trail deep in the Sierra during the summer became my new rambling river safe within its banks.
Then my cancer diagnosis last January threw me over the cliff again and tore my sense of normalcy to bits. With the journey’s rapids, cascades, and wide smooth stretches, I’ve been doing nothing but trying to find a safe eddy I can count on – even if it’s being able to anticipate the good days and bad days so as not to be flung over the cliff daily.
The Tuesday before Thanksgiving, I was tossed over a cliff again by my own mind. I ended up 5150’d and spent two nights in a mental hospital. The quiet and wonderful care I received set me gently back in a calm spot in my river and with more help, I am floating softly downstream to my source. More about that in the next post.
It’ll be twenty one years ago this Thursday that I heard the words: “It’s what we feared the most.” Sitting on the exam table, the air was knocked out of me like someone slammed me in the back. That day I’d had a lumpectomy on my new surgeon’s lunch hour. He squeezed me in. “The margins are not clear so we’ll have to do more but tomorrow I’m leaving for India for six weeks. You’ll need a surgeon, a reconstructive surgeon, a radiologist and an oncologist.” “But I’m a backpacker!” as if that gave me some kind of immunity. “And next year you’ll be backpacking as a breast cancer survivor.” Ok, I thought. I can do this. But, there I was, diagnosed with breast cancer and left to figure it all out on my own. Though the pathology report called it a slow-grower, I was anxious to get this alien life form out of me, especially before it spread. I chose a mastectomy over a lumpectomy to greater ensure that I was done with this disease and started looking for a surgeon who was not headed for India.
I’d first felt the lump two and a half years earlier and had it scanned and ultrasounded and they deduced that it was a fluid filled cyst. I watched it for two and a half years until I leaned on it in my hammock on a backpack trip to get grounded three days after my daughter came out as gay, and it hurt. The skin was dimpled where the lump was. My nurse practitioner gasped when she saw it. She’d never hugged me good-by before. An in-office biopsy was quickly scheduled for after hours at a surgeon’s office. Having all afternoon to fret, I prepped with two slices of pizza and two glasses of Cabernet. The biopsy resulted in a bad vaso-vagel reaction with lots of red pizza in the trash can but no biopsy sample. A lumpectomy scheduled for a week later would get a sample for a diagnosis.
I learned that there was a new technique called a Sentinel Node Biopsy which would prevent me from having lymphedema at altitude, a common problem when they remove all the lymph nodes in your armpit during the mastectomy. I called around to get a doc that would perform a Sentinel Node Biopsy along with a mastectomy. It was a common procedure in the LA area but I found only one doc with experience in the SF Bay Area. I would call a hospital to see if it was a procedure in their repertoire and, from John Muir in Walnut Creek, the sweet speaking lady on the other end of the line said, “Yes, we do it, then we remove all of them.” I said, “Well, what’s the point of that?” “Don’t you want to be part of the group that the docs practice on so women in the future can have it done?” I reflexively yelled, “NO!” and slammed down the phone.
I interviewed four plastic surgeons in their very snazzy offices. You can tell by their office how lucrative their practice is. One reached into a cabinet behind his mahogany desk and tossed a quivering blob of gel onto the desk top. “That’s what we use,” he said of implants. I starred at it, touched it, and lifted it up in the palm of my hand. That’s about ¾ of a pound,” I said. “Yep.” “My hammock weighs about that much!” I was a AA and they all wanted me to go up in size. (Insurance is obligated to even up both sides.) While discussing it with a nurse, she unexpectedly moved in close, unbuttoned her blouse and showed me hers, clearly a perk of her employment, “You could have THESE,” she said. I recoiled only wanting to stay alive.
They all had photo books of their patients pre and post-surgery. They were all very proud of their work. They promoted fancy tram-flaps, and procedures where they wrap your back muscle around and fashion a boob out of it. “But I use my muscles,” I said. That didn’t seem to matter to them as long as it looked good in their portfolio. Me? I just wanted to stay alive and use my body if it was still here. In my vulnerable state I chose the plastic surgeon who said the magic words, “I’ll take care of you.”
The surgery was Dec. 9, my father’s birthday, but I had distanced myself from my family for about 8 years. Nervous but anxious to get the alien life form out of me and on to chemo and radiation and the rest of my life, I arrived having already had a drunken going away party for my breast with girlfriends at a local bar the night before. The next thing I remember was a hot iron on my chest, like the kind steam comes out of when you iron shirts. I could see the oncology surgeon and the plastic surgeon with their blue gowns and head nets on. My eyes were open but I could not move. The pain was searing. Then a mask moved over my face and I disappeared again. From then on I always tell the anesthesiologist not to take a nap on the job.
After a month of Jackson-Pratt Drains hanging out of my side, they were yanked, my skin having grown into them, and an attempt was made to fill the tissue expander for my new boob. But it had been installed upside down and instead of the needle hitting the port, it went through my skin and hit a metal plate… five times. Now in chemo, where they drip drugs into you that make you not heal, my oncologist gave me permission to have a new tissue expander correctly installed but made me promise that I would not get it infected.
Oh, Karen… I later told Rick to chain me down and let me howl the next time I want to get into the hot tub at the YMCA with an open wound: Another surgery to remove the tissue expander and clean out the sewer in there. Coulda died.
So then, six months of two types of poison dripped in to kill whatever was left and five weeks of radiation later, I was back backpacking, literally. I didn’t belong on the eight-day trip off-trail around Mts. Banner and Ritter with my bald head and armpit peeling like the skin off of pudding due to the radiation burns, but I needed to be there, in my wilderness home with my tribe. Besides, I had to be there to reduce my husband’s dislocated shoulder when he slipped on a steep slope, instinctively grabbed his poles, and jerked his arm out of the socket.
A few more dislocated shoulders, surgical repair, a lost gal bladder, and a hip replacement for me and we’ve been happily backpacking ever since. I’d go in for my check-ups every six months, mostly to share my latest adventures with my doc. I’d stroll in all tan and strong and healthy past the bald, gray-skinned people all hunched over barely alive. What was I doing there?
I got twenty great years. That was forty great check-ups. I’m even on my third oncologist, having outlived the careers of two of them.
“It’s a gut punch,” my doc said today, “these late recurrences. You go through all that and after a while you just forget about it.” Exactly, I thought.
Sun slicing through the windows and splashing onto the bathroom tile and sifting through the ficus leaves to dapple the wall. Silence. Rick is at the cabin doing some winterizing. Abby is sleeping by my side.
Me? I have a newly rising CA 15-3 cancer marker and growing pains behind my lower ribs, especially on the right side. My glucose was 133 before my PET scan last Wed. Mine’s usually 90. My pancreas? Crap. I know too much medical shit. And yes, I can feel the tumor in my throat when I swallow. I REALLY don’t want to get that radiated again: pure HELL. I’m awaiting my PET scan results. I’m afraid I’m slowly dying. Dramatic? I can’t tell. I could be hit by a bus tomorrow.
Abby is over 12 years old. She’s having difficulty getting her rear end up on the couch or on the bed or into the car. I only walk her our one-mile walk in the neighborhood now – no eight-mile hikes in Briones like last year. Heck I’ve only maxed out at seven myself this year, not counting the eight mile Burma Burn I did with friends on Diablo in early January before I knew. I watch Abby slow down and wonder which of us will witness the loss of the other. I don’t want either. Her nose is at my thigh and her big furry paw on my knee as she sleeps with my left hand on her head. How I love this dog.
I’m wondering at the importance of activities I’m doing in my daily life. Not knowing when any of us will pass, I’ve always questioned how I spend my time. I’m cleaning out, sorting, and repositioning stuff in my sewing room/office. It feels like I’m getting ready to start a project, or leave it all in good order – good order that probably no one else cares about. It feels important and useless at the same time, like in the movie Love Story when she’s dying and can’t remember the music she used to know. He doesn’t care. She does. Does anything really matter? Except if it helps others, feels rewarding, or is fun? I planted new plants yesterday for Fall/Winter/Spring wondering if I’ll be here to enjoy them or if they’ll only be a temporary reminder that I was here.
I’ve always really loved being alive – witnessing the changing light and soaking in the darkness, the stillness, the little things, the twit of birds and bugs, the glint of light on hard surfaces, the smell of pork chops frying and banana bread baking, Josh Groban singing, the way my body feels making its way across the land legs and lungs pumping, black dog noses, salty ocean water, sun on my skin, laughter. And now Covid limits my movements and meetings. Will I live long enough to see the days post-Covid? When we can eat and drink at a restaurant with friends, hike with friends, travel at will, float in the Costa Sur lagoon, feel the hot Puerto Vallarta sun on my skin, hug my grandchildren, hug my friends?
Abby runs in her sleep. I awoke with a dream: I was doing something and got distracted by the cry of a baby – a tiny baby, so small it fit in the closed compartment of “Sunday” in a weekly pill container. I lifted the lid and remembered that I had a baby. How long has it been in there? What’s it doing in there? Can I be so irresponsible that I’ve forgotten that I have a baby? It’s impossibly small – a half inch in diameter. I see never-opened eyes and tiny blue veins. It fits like a small walnut in the palm of my hand looking like a just-hatched bird. Do I take it to the hospital and thereby incriminate myself with neglect? Will it survive? How did I let this happen? Suddenly its mouth opens and it starts rooting for a breast. It grows into the size of a newborn and I tuck it under my shirt to feed. Do I even have any milk? How did I let this happen and screw this up? This that is so important? I awake feeling terrible guilt.
I was reeling a bit from an acquaintance’s response to my cancer diagnosis: As long as my treatment wasn’t too bad and I was alive, I should be ok with it. He could not accept that my life style change was a huge loss for me: “Well, we’re all going to slow down, eventually.” “I’m not ready,” I said. Rick piped up, “She doesn’t have to like it.” “And I don’t,” I said. He looked away and shook his body as if to say that what I liked and didn’t like wasn’t important if I was still breathing. I know that basically, he can’t handle the whole idea. I’m living the idea. It’s sad, humbling, grievous beyond words. I can’t believe I’m in this position. People on Facebook ask questions about backpacking the John Muir Trail and I know all the answers. I just can’t DO them. And how can I live these precious days to my best advantage while being so sad? I think I’m getting beyond shock and anger and moving into acceptance and sadness. After many phone calls, I had to accept on Friday that I wasn’t getting my PET scan results before the weekend. I have no patience, never have – perhaps born of early neglect? Sometimes I feel like a hungry baby clawing the cold metal rails for a teat, to be held, to be seen, to have my wide eyes looked into by someone who wants to see who’s behind them.
Footnote: After the May PET scan results showed 75% decrease in the cancer and I backpacked four short trips this summer, I got the results of the PET scan done last Wednesday. It shows “progression,” a fancy way of saying that it’s growing again, even with the treatment. Insert expletive here. But a new drug is in my future. The journey continues.
When asked if he’d ever been lost Daniel Boone replied, “I’ve never been lost, but I was mighty turned around for three days once.” I’ve been turned around myself – might have even called it lost:
Ended up in the parking lot after hiking six miles in a hail storm. Had a map. Needed a compass.
Went up the wrong chute on Lucy’s Foot Pass last summer and couldn’t get over to the other side. Had to bail and hike back down.
Hiked around Red Devil Lake instead of directly to it inciting panic in my husband when he found me missing.
Followed a creek eastward for about a mile alone on an after dinner saunter only to look up and face the western setting sun. My first thought: God moved the sun, not that the creek curved.
Other times to prevent getting lost I’ve gotten hints of intel from others, like the time a ranger atop Kearsarge Pass told us which side of the creek was easier to bushwhack through in Gardiner Basin. I’ve used Secor’s book, High Sierra Peaks, Passes, and Trails to plot many a cross-country Sierra adventure. Other times I’ve wandered lost in a dense mountain forest following others I’ve trusted. (Thanks Rolland for introducing me to cross-country hiking.)
I’ve even taught map and compass lessons to my clients. My most valuable lessons: Stay found. Know where you are. Know where the trail goes. Know where the water is (it’s in the low places just like in the bottom of your water glass). Keep an eye on what to expect and note it as you pass. Know which general direction your car is (baseline), so you can get back to it. Know your drainages (handrails). Like Muir said, “The creeks and rivers are the streets of the Sierra.”
But I’ve never stepped onto a tail or path or into the wild with neither a map OR compass, an idea of where I would be going, what to expect, or without friends for support and to argue our way toward the correct route.
This path through cancer is new territory and I have no map OR compass. Even though this is a recurrence of the original invasion from twenty years ago, which was also uncharted territory, metastatic cancer (I hate to even be associated with the words) is a whole different animal. You can’t just cut out the tumor, radiate the lymph nodes, and fry the rest of your body with chemo and hope you got it all. (Been there. Done that.) It’s all over. It has to be managed like a smelly tent-mate you can’t get rid of and you hope he doesn’t stab you through the heart in the middle of the night.
Afraid of the information I’ll find, I try to stay away from the internet. I’ve even told my doc that I’m too scared to know some of the statistics. I don’t want to know how steep and rocky the passes will be, how terrifying the stream crossings, how harsh the dry spells, or how this trip will end. What I do have are the creeks and rivers of my heart that I follow with confidence and friends and family to support me as I bumble my way along. (Thank you all for the cards, emails, texts, phone calls, food shopping, and surprise watermelons!)
Where does one learn how to navigate the landscape of their life? I don’t know. I suppose there are those who are taught by loving parents. In my late thirties I found myself as a blob of mud on the riverbank – formless, rootless, and more than a might turned around. Over time I fashioned myself with hands of love and compassion into the shape I was meant to be. I found myself most comfortable without a roof. I discovered that more than anything, I wanted to wander the Sierra. I found that being myself was my greatest gift (who knew!?), that friends were gold, that being gentle with myself was my path, and that my heart was my northern star.
I did not learn this from my mother.
My mother, always the martyr, would tell me things like, “Yah, I was in the hospital six months ago with a heart problem.” I’d respond in shock, “Why didn’t you tell me!?” her answer, “Well, there was nothing you could do.” In her eighties at the time, I knew my mother. I knew she muscled through her heart adventure alone and afraid, no map, no support, and saved up the telling for just the right moment, when she was guaranteed the biggest reaction. I was aware that this was a dance. I was tired of it AND I was hurt that my presence and support would mean nothing, that my shocked response was more important, was the attention she craved. The more shocked I was, the more she felt she mattered.
I have since wondered what neglect my mother suffered as a child that made her come to believe that shocking people with news of past drama was the closest she could feel to connection. Of course, in me it only created a momentary reaction that quickly turned into hurt, anger, and despair at my impotence over past and future events – probably everything she felt as a neglected child growing up as the “surprise gift” to older immigrant parents, over-worked and overwhelmed managers of a nineteen twenties speak easy in the Midwest. And no map provided except for what the nuns taught her: fear, shame, and suffering. If she survived by manipulating people into making her feel that she mattered, well, one does what one needs to in this big scary world to feel found.
Facebook can be cruel, unintentionally cruel, but cruel none the less. It seems like every morning Facebook presents a “memory,” usually a picture from some previous year of me out hiking with friends. I look at the picture. I see where I am, who I’m with, what flowers are blooming – and I say to myself, “That’s when I was healthy.” I haven’t seriously hiked since I went up Mt. Diablo to Juniper Campground on Burma Road January 14. The downhill painfully jolted my spine and I figured it was from my ice skating fall the previous week. I didn’t find out it was due to the possibility of something else until January 19. I say possibility because I didn’t believe the cancer marker test result I’d just seen in the John Muir Portal while sitting at my desk, alone for the weekend; or the repeat test. It wasn’t until I saw the bone scan on my doc’s computer screen – a skeleton lit up like the Milky Way with fast growing invaders, that the truth of the matter broke through my denial. I still asked my doc, “This isn’t from an injury is it?” She said, “No,” and I collapsed.
I’ve been trying to compare and contrast my new life and old life along with reconciling and accepting the change, even as my situation is fluid and changeable daily. This time last year I’d wake up around 6 am on Tuesdays, get dressed, have breakfast, and head off to meet hiking friends at Peets Coffee in Walnut Creek before our 8 mile round trip, 2800 foot ascent and descent of Mt. Diablo on the steepest trail in the Bay Area, Burma Road. On Thursdays I’d do the same preparation and at 8 am meet friends at the Old Briones Road Trailhead here in Martinez for a ten-mile loop in Briones Regional Park. Friday would find me joining the Friday Hikers at some East Bay Regional Park that Larry Fong would pick and lunching with them afterwards. Occasionally, I’d join hikes on Mt. Tamalpais across the bay. Even during the Covid-19 quarantine, many of my hiking friends are still doing solo hikes or hikes with the correct social distancing.
On the other hand, at present I wake up at some undetermined time, depending on how well I’ve slept, stroll over to the kitchen, eat some Cheerios (now that I can eat) to keep the “morning sickness” at bay from the anti-estrogen shot I get once a month, and go back to bed and stare at my phone. I make sure my stomach is settled so that I will keep down my main anti-cancer pill and then wash it down with a few more Cheerios. After lazing around my eyes will get heavy and I’ll take a nap for an hour and a half. By now its noon or later. I’ll get up, wander around, and work on my next big job of the day: bathing. Often I’m too weak to stand for a shower so I’ll take a bath. Afterwards, I’m so exhausted that I head dripping wet to the towel I’ve laid on my bed. After a while I’m up and dressed, having lunch and looking out the window to the back yard, contemplating a walk among my blooming poppies and lavender. Sometimes I just sit on the edge of the deck and take in the colors and feel the warm sunshine on my skin. Other times I walk around the back and sit down watching the bees. Today was a big day. In the evening I held onto Rick’s arm as we strolled to the end of the court and back. This is my day. I completed 20 bouts of radiation a week and a half ago and they tell me I’ll get better.
So it was in the spirit of comparing and contrasting my two lives that I found myself thinking about my nights and how I now tend to wake up nightly in a puddle of my own sweat. I like to think that these night sweats are due to intracellular toxins released by dying cancer cells, not hormone shifts from the Faslodex injection I get once a month. Having been dropped into menopause by chemo for my first bout of cancer twenty years ago, I never experienced hot flashes and night sweats. I’d rarely had them with the flu or when a fever broke but never every night, and not to the point of needing to sleep with a towel.
The whole idea of waking up soaking wet stirred a memory from the summer of 2016 when I woke up drenched in my sleeping bag in the backcountry, usually a very bad thing. It was a special trip with friends – special for the first reason because it was a mistake. I requested the permit from Inyo National Forest six months in advance but mistakenly put July as the entry date instead of August. But a wilderness permit for ten out of South Lake on the east side of the Sierra should never be wasted so I sent out an email to a bunch of friends: “I am in possession of a wilderness permit out of South Lake and into Dusy Basin for July 19. Who’s with me?” The emails immediately started pouring in: “Count me in!” “Hell, ya!” In no time the permit was full and the trip was on.
Now, July in the eastern Sierra is a magical time and place. There’s still snow in the peaks, the sapphire lakes are “warm” enough to swim in, the wildflowers are at their peak, and the mosquitoes should be abating. Most of this group had roamed this cross country area before and in the whole 400 mile long range, it’s one of our favorites. This was to be an easy trip, a stroll. I’d just completed a twenty-two day trek of the whole John Muir Trail with my sister the week before and, while I was still acclimated, I could use some rest. So for me, rest on this trip included carrying my pack over 12,000 foot Bishop Pass and a cross-country wander among granite boulders and wide open fell fields around flower-dotted crystal clear lakes with my tribe of hiker trash. There were no big mileage days, no exploratory loops into points unknown, just strolling and swimming and sunning on big granite slabs like lizards and catching up with each other.
The previous April I’d been sitting in a lawn chair around our group’s campfire in Yosemite Valley when I blurted out to my two young friends: “So when are you guys getting married?” The future mother-of-the-bride sitting next to me playfully swatted me with her hand and then conceded, “You can say that but, I can’t.” I knew that. I took full advantage of my unique position and put it right out there. Regina responded with a frustrated: “I’m waiting to be asked!” while Banning slunk in his chair, lowered his chin and quietly redeemed himself with, “I have a plan.”
Well, the night before we left for the Dusy Basin trip, Banning phoned my husband and warned him that he would be proposing on the upcoming backpack trip. We didn’t know when or where but it was going to be on the trip and it would be a surprise.
Our second backcountry lake was a high nameless one at 11,400 feet, that I call Big Beautiful. With a swimmer-friendly granite entry surrounded by some of the Sierra’s highest peaks, we had all swum and sunned; our pink, naked, hairless, bodies all splayed out in contrast on the sharp granite. Dinner was cozy in a granite amphitheater overlooking the lake. There had been circulating the notion that the question was to be popped after dinner when we would all go for a walk, with our cameras, toward a peninsula that jutted out into the lake, ostensibly to capture the sunset. We all kept our distance and set up our tripods for “the sunset” as the couple wandered toward the peninsula. Then suddenly, with gasps from all of us, the knee hit the granite, shutters clicked away, and the globe rocked a bit on its axis. That’s the second reason that this trip was special.
We were way above treeline so I slept on my pads in my husband’s tent and not in my hammock, like usual, (no trees to hang it from). But, not before we stayed up to watch the full moon crest the peaks to the east and spread spangles across the lake. The next day, I suggested we drop down a few hundred feet into the trees so that I could sleep in my hammock.
By now, you’re probably wondering what this story has to do with night sweats. Well. it’s a long winded walk down memory lane to when I experienced the one and only time that I thought I’d, unbeknownst to me, peed in my sleeping bag overnight – another kind of waking up in a puddle. Even in summer, high altitudes in the Sierra can get cold at night – really cold, frost-on-your-bag, and ice-in-the-puddles cold. Especially because I’m swaying in a hammock, surrounded by air, hanging in the Universe under a spray of stars, I can be colder than the others even if they’re cowboy camping on the ground. To mitigate that I’ll often boil water in a pot on my stove and fill a plastic one-liter Platypus water bag with the hot water and place it in my sleeping bag like a hot water bottle. This is what I did that night. For twenty years this method had kept me toasty without one leak. Well, I awoke warm and cozy in the morning sunshine, but damp. Had I peed myself? A quick look at the Platy revealed an empty vessel. There was relief of a sort that I didn’t need the Depends that I thought I might, but also a deep worry because if this had been a very cold rainy day coming up, I might not be able to dry my sleeping bag out. As it turned out it was another hot, sunny day with more swimming, sunning, and drying out of the sleeping bag.
So, the lesson in comparing and contrasting my present and past life is that, no, they aren’t so different, after all. Maybe if I can just pretend that my night sweats are as annoying as a leaky Platypus in the backcountry with a sunny day ahead to dry out, I’ll feel better about the whole thing. Just thinking about this memory makes me happy. I have a LOT of those kinds of memories in the bank and instead of seeing them as a cruel reminder of a happy past, I’m committing to treasuring every one and counting myself blessed to have lived them.
I haven’t posted in awhile because I’ve been waiting to feel better before I simply whine all over the page. It’s been a hellish two weeks suffering what I call the torment of the damned. My throat and esophagus were so burnt from the radiation to my spine that I could barely dribble down some water and no food. Rick dutifully collected all my little spoons and bowls of odd soft foods that I’d attempt to eat and then abandon all over the house. Jell-O hurt. Milkshakes hurt. Applesauce hurt. Water hurt. Burps hurt. I told them that radiating someone’s esophagus should be outlawed. I ended up receiving IV hydration at the hospital Monday through Friday last week. The pain was like a hot pipe inserted down my throat all the way to my stomach. It felt like the little chartreuse green radioactive brick that Homer Simpson tossed out his car window on the way home from work at the nuclear power plant ended up in my throat. If my esophagus looks anything like the radiation burns down the center of my back, it would explain why it hurts so bad. The pain keeps me up but before it wakes me I have two favorite moments every night. The first is that delicious fleeting moment upon rising out of sound sleep when I’m barely conscious but there is no pain. The second moment is the one that immediately follows: just before I remember that my body is riddled with cancer.
I’ve been quarantined except for hospital visits for two weeks now. I cannot afford to get Covid-19. Rick has bleached all washable surfaces – counters, door knobs, handles, my car’s steering wheel. IBrance knocks down white blood cells and red cells leaving my immune system weakened. This mountain woman has rarely thought of herself as fragile. Alas, I am only human and this mortal flesh is getting heavily bombarded in the name of extending my life. I’m currently on my second ten-day stretch of radiation, this time where the tip of my hip screw is screwed into a cancerous chunk of bone in my pelvis and an especially painful lower right couple of ribs. They’ve assured me that the beam through the hip is not hitting any painful internal organs and the zapping of the ribs is a tangential glancing blow across the bow. I keep trying to remember that I’m investing in my future – a future where I can play with my grand babies, watch them grow and become their own unique people, and witness my children’s pride; a future where I sit by a mountain lake sharing a meal with friends; or sit in the sand by our cove in Mexico sipping a Margarita with Julie and Marty.
The radiation has left me exhausted. I can walk about 20 steps. I walk to the kitchen and put my head on the counter. I walk to the living room and toss myself onto the couch. I nap three times a day. Where is that woman pushing her way up Lucy’s Foot Pass in Kings Canyon last August? The danger in being a Clinical Lab Scientist (married to a PhD in Biochemistry) is that I know a lot of things that can go wrong and I pester my doctor about all my hunches to explain things. Thinking the exhaustion is due to frying my thyroid while zapping my spine, I had a TSH done. No, it’s fine. Thinking my red cells got too low, I had a CBC done. No, my hemoglobin’s an 11, fine. Crap. I guess I just have to weather this.
So, bottom line: I’m now able to eat some and drink, although it’s still an effort and a fight against pain. I nap my day away and wonder if this is my new normal. On a stormy ever changing sea, I’m trying to see what this journey ahead will be like and I get worried that this is it. With the preciousness of life never more evident, I feel like I’m wasting it.
But, one thing’s for certain, the cards and texts, flowers, calls, emails, and even homemade cookies! have sustained me and put a smile on my face. Thank you all. Banning and Regina, and others, are shopping for us. People are supporting Rick in ways that I don’t even know. And Rick has been there from badgering me to drink to holding the bucket when I lose it. I could not have done this alone. And even as the stock market crashes, what’s really important has never been more evident.