Sunday, Stardate Sept. 20, 2020 – 9 am sitting up in bed with Abby thewonderdog:

                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 15-1 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.

Navigation Lessons: 5-6-2020

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.

Now and Then, April 15, 2020

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 it’s 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, 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 with me waking 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 a 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 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.

Big Beautiful Lake
Amphitheater Kitchen
The Knee
The Ring
The Alpenglow at Sunset
Moonlight on the Lake

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.

Lemons Paintbrush along the way
My hammock below the Palisades

You may now be wondering what this story has to do with night sweats. Well it’s a long winded walk down memory lane to when I had 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.

3-11-20: New Journey. Big Mountain. No Summit.

The Short of It:

Diagnosed in late January with metastatic breast cancer: spine, ribs, pelvis, shoulder blades, spleen, liver. It can be managed but, at this point, not cured. I will have good days and bad days. This is a big mountain I’m climbing with no summit.

Rules of Engagement:

Do not ask me, “How’s YOUR cancer?” (I’m not taking possession of these wayward cells. I’m trying to get RID of them.) DO say, “How’re you doing?” “What are they doing for you?” I’ll give you as much detail as you’d like or no detail at all.

Do not ask me how long I have to live. (I don’t know. IBrance is only 6 years old. )

DON’T say: It’s God’s will. God doesn’t give us more than we can handle.

DO send cards, texts, emails, phone calls.

DO tell me about your trips and adventures.

Be prepared for hearing how shitty I feel and don’t try to fix it. (They keep telling me I’ll feel better.)

DO let me cry if I need to cry. Hugs are welcome.

DO ask if there’s anything you can do. Mostly staying in touch is the best medicine.

I thought I kicked breast cancer 20 years ago with a mastectomy, chemo, and radiation. Apparently, at least one cell survived and has decided to party. I’ve lead a very healthy active life since my initial “cure” and this diagnosis has filled me with shock, sadness, and a bit of anger.

Scans, tests, and a liver biopsy later, I’m on an Estrogen blocker and IBrance, a cell cycle disrupter for E+, Her2 – disseminated breast cancer. I recently had my spine radiated for 2 weeks to remove the ice pick of pain out of my back. Unfortunately, my throat was in the way and now I can hardly eat or drink. Imagine Chernobyl in you esophagus. I’m getting an IV of fluids here as I type.

My doc is wonderful. She remains “optimistic” and says I have years. I want at least 30.

My husband, Rick, says that our failed attempt at Lucy’s Footpass in Kings Canyon last August cannot be my last backpack trip, although there’s a spot in my pelvis where a screw tip for my titanium hip will have to be radiated and grow new bone first. The Grand Canyon rafting trip is off. Doc doesn’t want me breaking vertebrae in the bottom of the canyon. Darn.

While calls, cards, emails, and texts are my lifeline of connectivity, this will be a good place for current updates and insights on my journey – medically, emotionally, and spiritually. I told God during the initial bout that I was willing to learn ALL the lessons I needed to because I was NOT going to do this again. Well, apparently there is more to learn. Follow along. It’s gonna take a village.

Everyone’s Gotta be Somewhere.

So I run around like a mad woman, packing, paying bills, tying up loose ends, sending off some last-minute Christmas cards, getting the three dog/house sitters coordinated, and finally hit the hay around mid-night. The alarm sounds off at 5:25 and I’m up to do an abbreviated morning routine before our neighbor drives us to the Lafayette BART station for our one hour ride to the San Francisco Airport. I stare into the mirror hoping I look better when I touch down in New Hampshire to visit with my sister, her family, and my NY transplant son.

All goes well. We’re flying a southern route with a stop in Dallas-Fort Worth and are pleased that we’re avoiding Chicago which has pretty much closed down due to a blizzard the size of my fist on the NOAA website.  The BART train rumbles in just as we reach the platform.  I’m feeling lucky today. Even at the dark hour of 6:20 am the BART car is full of newly groomed but sleepy commuters. Lugging our luggage, my husband and I find separate seats. No problem. I’ll be spending all day on the plane nudging his elbow over onto his side of the armrest.

Was I even through the Caldecott Tunnel when I got the phone call on my cell with a recording telling me my flight was cancelled? I look up to where Rick is sitting and see his body twisted back toward me, his phone to his ear, and his gaping mouth filling the aisle.

In Oakland most folks exit the train and I move up to sit next to Rick to plan our next move. I’m thinking we should just get off, turn around, and go home. Coffee and breakfast at our kitchen table sounds good about now. Rick thinks we should pursue this at SFO. So we screech and rumble on through the tunnel under the bay, which has always given me the creeps, and down the peninsula to SFO. It’s the shortest day of the year, the day the Mayan calendar stops, and there is a hot pink haze burning the sky above Mt. Hamilton to the south. No, the world isn’t ending.  It’s just another day beginning.

Arriving at the American Airlines area, I find an official looking woman in uniform and ask what we should do.  She points to a long line and gives me a card with a phone number on it and says I should call. Now, yesterday I looked at my flight information and noticed I gave my last name twice when I bought my ticket. I called to straighten it out before homeland security straightened me out. I was on hold for an hour and a half. Thank you speaker phone.

We get in line. This is a line of put-off, irate travelers. Maybe they want to concentrate us all in one spot so we don’t contaminate the airport with our angst and frustration bordering on rage. The guy in front of us is there for the second day trying to get to Paris. The guy in front of him is on our flight traveling only to Dallas-Fort Worth. The next flight is Sunday. He doesn’t want to cut two days off his trip and they won’t refund his money. He’s demanding a paid limo home. The guy behind us actually gets through on that number the uniformed lady gave me. So I leave the line to go sit in some comfy chairs and dial the number, myself.

It took awhile to get through and then I was thanked for my patience and put on hold. I was sitting next to an older gentleman who was also on his phone in a conversation peppered liberally with the words “fucking incompetents.” It turns out he was on his second day of travel to some “little town in Northern California” that he couldn’t pronounce, visiting adult children and grand kids, no doubt. I’ve driven to the Oregon border in five and a half hours. I suggested he rent a car… or walk. It would be faster.

While sitting there, I watched a little boy in line just behind my husband, maybe seven years old, put a phone to the side of his head and break down sobbing. The disappointment in the delay to meet someone wrenched his body.  Tears flooded his red, contorted face, he fell to his knees, and his mother dropped to comfort him. They sat there on the floor in line in the airport for at least 10 minutes. The line moved, they both found their feet, but his sobbing continued.

Having finally spoken to someone on the phone and booked on a new flight tomorrow, I joined my husband in line to inform him. But, mainly, I got back in line to comfort this young boy. I wanted him to hear that I was in the same position, that I was disappointed, too, but that we just have to wait, and that it will be OK. It will be OK. Perhaps he was traveling to see a dad he rarely sees. I don’t know. I would have loved to hear this reassurance, that it will be OK, many times when I was a child. But my words were birds that few away. I was no one he knew and my words meant nothing. He remained inconsolable. His disappointment and frustration was painful to watch. It hurts even now as I write this in the comfort of my bear’s nest (my office).  And I find my disappointment nothing compared to his.

Rick and I found our way back onto a BART train bound for home with our neighbor willing to pick us up. We’ll try this again tomorrow.

Copyright by Karen Najarian 12-21-12