I [Heart] My Life

My Secret Time Travel Life

In these months following my dad, George's death, I've begun to write a book. It is a memoir, a self-reflection, on my journey from cancer to caregiver, from loosing my dad in my 20s to finding him again in my 30s, only to loose him again for good before 40. 

At first it was hard to write because poking around at memories felt like an insult. Not an insult to him and his memory (he urged me to write almost more than anyone). No, an insult to me and my open, broken heart.  But ever since I was young, I've always managed to heal myself through writing and so I made mysef sit down and write something -- anything! -- each day, even if it was just 10 minutes worth and I wanted to throw my noebook across the room afterward. (Which was frequently true.)

Still, I wrote.

And gradually, as the notebook filled, the pain began to lessen its grip. A bit. At first I didn't have a clear destination with my writing, but I often found myself writing about my dad's so-called cancer journey -- that metastatic pancreatic cancer Autobaun -- more often than I wrote about anything else, and as the frequency picked up, so, too, did my desire to write about him. I wrote about his diagnosis and treatment, hospice and dying, but also about the little moments in between that constitute a life, even if life is happening at Stage IV.

In the beginning, mostly I wrote at night, my notebook open on my lap and a fast pen in my hand. 

A deep breath, and as I looked at the blank white page, words would start to bounce around in my mind, images would appear behind my eyes, my heart would ache inside my ribs, and my pen would begin to move. 

So often it was George who flowed through the blue ink. He'd emerge on my page just as he looked every day of my life -- Levis, worn work boots, t-shirt under a heavy, quilt-lined flannel button shirt. Tan, hairy arms, a thick head of hair gone more salt than pepper, a mustache to match. Creases in the corners of his eyes -- laugh and smile lines. Worry lines etched across his forehead because a life lived is often some ratio of joy to sorrow.

Another deep breath and I can smell him: it's the leather of his gloves, boots and wallet, it's cut wood, it's damp soil, it's warm sunshine on a redwood shingles, it's grease and diesel fuel, it's deoderant and aftershave and a lifetime of Head and Shoulders shampoo, it's Tide in the washing mashine, and Dial/Dove/Ivory in the sink. 

Another breath and I can feel the warm, soft flannel of his shirt against my cheek, his arms around me in a bear hug.

And in this way, my pen has become my time machine. Ink to paper, my eyes sort of glaze over and I'm looking at something behind my lids... but not just looking back, no it is also smelling, tasting, touching, hearing. Feeling. And yes, looking, too. We, my dad and I, are side by side in his little silver electric car, soaring down the mountain road, the light flashing through the maple and bay leaves, fir and pine needles. I'm driving, and he's beside me in the passenger seat, our twin water bottles between us in the cup holders. Each of us is hidden behind dark sunglasses. 

If this is a true memory, the car is bearing us down the hill to Silicon Valley, to an oncology appointment. We are silent with worry, or maybe discomfort. But, I've discovered time travel is a free spirit, not a slave to memory. And so I feel the leather of the steering wheel against my palms and I guide the car north instead, along the crest of the mountain. We follow Skyline Boulevard  through Douglas Fir and Madrone, Oaks and Bay trees lining the road. The sun is on my left, way out over the Pacific, hidden by the lower elevation hills and the trees, but I know it is descending toward the horizon out beyond Pescadero and will soon splash red and orange onto the clouds here above us. As we cruise along, we pass through stands of magestic, stead-fast Coastal Redwoods, the sun even more muted here by their giant trunks and skyscraper heights. 

Now a fog is rolling in. The little silver car slices through patches of it resting in white cotton-like masses on the highway. As we emerge from the damp white we are suddenly sorrounded by the rolling golden hills that give California her nick name. The Bay Area stretches below out my dad's window, and on my side the hills roll down toward the open sea. We wind along the road, a tiny dot moving along the very edge of the continent. 

I slow the car and pause for the stop sign at Highway 84, and then switch on my left turn signal. I ease the car into a parking spot in front of Alice's Restaurant. Tonight the motorcycle hangout is a buzz with mountain locals home from Bay Area jobs and schools. We cross the wide wooden deck and enter by the bar. The atmosphere is casual, relaxed. We take an open booth among the regulars: the single guys at the bar, the families at the tables, one or two dogs lying underneith. It is loud -- conversations mix with a couple flat screen televisions broadcasting baseball games. The Giants on one, the A's on the other. 

George takes out his glasses to read the menu, though he almost always orders a variation on a theme: fries, cup of soup, lasagna. Tonight is no different: he gets the pasta, the chicken tortilla soup, the sweet potato fries, and a regular coffee. Meanwhile I mill over the menu, finally choosing the tuna melt, house salad with bleu cheese, and a Chardonnay. 

The waitress takes the order and moves away from the table. George puts his glasses back in the hard, black case, and puts it in his breast pocket. He looks acrosss the table at me and smiles. 

"So? What's new with April?" I sniff at his use of my name and smile back.

I feel tears pricking my eyes -- but these are tears of the present moment. My time travel machine is weakening, pulling me back to the present. Stay with it!

"I'm ok, Dad. Doing a lot of writing lately." 

I bite my lip and a tear betrays me and splashes on the notebook page, and I'm back in my dim living room, alone. But the memory of that car ride and our dinner together feels real enough and I'm grateful for the time spent together tonight. 

In this way I get to see -- and smell, and feel, and hear -- my dad often. At first it was every night. Now it is less frequent, maybe once or twice a week, as my need changes. It is always real: the feel of the leather booth seats under my butt, the clink of ice in the plastic water cup in my hand, the greasy smell of burgers frying and ketchup floating in the air. 

I'm ok, Dad. I'm writing a book finally.

Well, good for you, April! His smile is full, genuine, creasing the corners of his eyes.

And then the waitress arrives with his soup and my salad, fries for both of us, breaking our eye contact. I sip my wine and we drift in and out of conversation as we eat, laughing now and then, sometimes comfortably silent -- like every other father-daughter pair eating dinner together tonight across the planet.

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Yellow as September

Greetings! I've been a bit MIA from my blog recently. But trust I'm well, and I'm writing! Here is a piece I wrote yesterday on World Cancer Day...

Yellow as September

It started with yellow,

Ended with yellow,

And yellow lived at the core.

Yellow, goldenrod, canary, No. 5.

Yellow: the soft, tattered T-shirt you wore the last time you left home.

Yellow T-shirt held to my nose, inhaling your scent, months later.

Yellow was the "cheerful" hospital gown and the backs of your hands as you struggled with death.

Yellow are the new floor boards in the room we prepared for you, reflecting the sun, panoramic views of firey sunrises and smoldering sunsets over purple mountains.

Yellow as a mango, I said when I saw how jaundiced you were last March.

Yellow bathroom, yellow lighting, you shrugged to explain why you hadn't noticed: yellow skin, yellow eyes.

Iodine smeared on your Mediport,

Chemotherapy prepared by a nurse in a yellow bio-hazard smock.

Hard yellow candy when the port is flushed to mask the sudden saline taste in your mouth.

Yellow double line down the highway, I drive you home, nauseous.

Jars and jars of yellow chicken broth, all in a row, waiting.

A splash of lemon juice in your water is all you want.

Then yellow scrambled eggs -- a little cheddar cheese, a lot of butter. We sit across the table from one another.

On good days.

On bad days, I sit alone.

From spring Buttercups, to dry, yellow grass, to juicy Golden Delicious apples: the orchard out the kitchen window marks the passing time.

Your golden hour; the final seasons of your life.

I start the old yellow dryer, wedging the broom handle just so to keep the door shut.

Behind me, rows of golden honey sparkle dully in the gloom of the laundry room slash pantry.

Mementos of another time.

Yellow: your peanut M&M wrappers. Once a guilty pleasure, now forgotten.

Yellow: the plastic water cup by your bedside.

Yellow: the maple leaves that litter the driveway you once kept so clean.

Yellow: the color of the hair of the nice nurse.

Yellow: the notebook I clench in my teeth as I climb to the roof the day you died.

Yellow: the daffodils that bloomed this week, not knowing you are gone.

 

 

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The Time I Took My Mother & a Shotgun to My Father's Funeral

The afternoon before my father's memorial service I still hadn't written my speech.

I'd been thinking about it off and on all week, but I'd been busy with other things: lining up the other speakers, writing the programs, coordinating with the mortuary staff re flowers, food, audio / visual, room capacity -- in a lot of ways it felt similar to my conference producing work prior to my dad's diagnosis. And that was comforting. I slid the role on like a glove.

But by the afternoon of the day before the memorial service I knew I needed to find a quiet spot and put pen to paper. I have always loved going up on the roof at my parents' house. I loved how stark the roof was: shingles with a few pipes poking up, a brick chimney, and a TV antenna. The view out is breathtaking, and the tree tops are right there!

So I escaped to the roof. A beer in my cleavage, a pen in my teeth, a pad of paper under my arm as I scaled the ladder.

A few deep breaths, and then the words began to flow... The following is the speech I read the next afternoon to those assembled for my father's memorial.

The memories fade in and out now, like radio stations on a cross country road trip. Static gives way to clarity. Bits of song, a smell, a feeling, a memory of a laugh -- sharp, then fading... All of it out of context, and thus each beautiful in their distinctness.

...

It's 1994.

My parents are side-by-side on the couch across the blue shag carpet. I'm facing them, fired up. I'm upset over the death of our second elderly horse. First Missy, then Chewy. Now we have just Rosie: a beautiful white a copper-colored Arabian-Appaloosa mix. A lone horse. A horse without a herd. An old horse.

I'm 17. I'm awash in sorrow for her loss, imagining what it would be like to be the last one standing. I'm passionately suggesting we put this lonely -- though otherwise healthy -- horse out of her misery.

My mom looks from me to my dad beside her and says, "If I go first, watch out for April! She'll be coming for you with a shotgun!"

...

The memory fades to static...

A new memory comes into focus...

...

It's a couple weeks ago. My dad and I are at his kitchen table, eating scrambled eggs. He's thin, weak, tired. I'm telling him the horse story. I'm nervous it won't go over well.

When I get to the "watch out for April!" part, he nearly chokes on his eggs. Bits fly out of his mouth. His laugh is clear and beautiful.

...

The memory fades...

...

Now it is last week: the day I take him to the hospital. We are in his car. He's in the passenger seat, his eyes closed. Every turn, every bump, he moans. I'm desperate to help him. We are fairly flying down Black Road -- the hospital like gold at the end of the rainbow.

I'm thinking: God! Good thing his eyes are closed! He'd never approve of this speed!

Just then, out of the blue, his eyes still clamped shut, he says with a smirk, "I hope you're timing this."

...

The memory fades...

...

My grief is like these memories: in and out like the tide. My sadness comes in waves. Like a punch in the gut, the memories come unbidden. Everything reminds me of him. Grief washes over me. But the memories comfort me, too. I don't want to forget.

I'm so grateful we learned in these last six months to hug often. To say I Love You every single day. To lean on each other.

But there is one thing I never got the chance to tell him:

Fifteen minutes, Dad.

Fifteen minutes from your house to the hospital.

New. World. Record.

 

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A Daughter Pens Her Dad's Obituary: George Herbert Johnson, GHJ Tree Farm

A Daughter Pens Her Dad's Obituary: George Herbert Johnson, GHJ Tree Farm

George Herbert Johnson

November 15, 1952 – September 5, 2014

 George Herbert Johnson, 61, passed away peacefully on Friday, September 5^th, at Good Samaritan Hospital in San Jose, surrounded by his three children, April Johnson Stearns, Dale Johnson, and Kyle Johnson, and his two brothers, Milo Johnson and Craig Johnson.

 

It is a tremendous sadness and honor that I, April, now write his obituary. When my father was diagnosed with Stage IV Pancreatic Cancer this last spring, I was with him in the doctor's office. It was the worst day our family has ever faced, and yet even then my father acted with his customary grace and strength. After we left the doctor's office, we stood in the parking lot. I was stunned, struggling to keep it together. He pulled me to him in a big bear hug, comforting me when I should have been comforting him.

 

There is so much to say about my dad's last months, weeks, minutes, but I don't want his life to be summarized by the cancer. The truth is, his life was absolutely full. Bursting! This was a man who squeezed as many minutes as he could out of each day. When most of us barely roll of out bed with enough time to get to work, he was up doing work around the house before putting on his work clothes. When most of us were turning on the TV and relaxing at the end of the day, he was pulling his jeans on and heading outside to work on his farm until sunset, or even after. It was the land that he loved: being out in it, on it.

 

But I digress.

 

My father, George, was born on November 15^th, 1952 in Binghamton, New York, and was the second of four sons of Milo and Evelyn Johnson, known locally as the couple behind the Peacock Tree Farm. Raised and educated first in New York and then in the Bay Area, George graduated from Los Gatos High School in 1970. It was here that he met his wife, Grete Hafstad. They married on a rainy afternoon, February 1^st, 1976, in Los Gatos, and honeymooned in Lake Tahoe. Soon after they moved to what would become their life-long home on Skyline Blvd – a place they named with their matching initials: GHJ Tree Farm. I was their first child, and I was born in March 1977. In 1980 and 1983, respectively, their sons were born: Dale and Kyle.

 

It may come as a surprise to know he proudly obtained his Private Pilot's License in 1972!

 

George followed in his father's footsteps, working at IBM by day, and in the Christmas Trees on Skyline by evening and weekends. At Christmas, he took some of his trees to the Peacock Tree Farm to sell, and later opened his own choose-and-cut Christmas Tree Farm (GHJ Tree Farm), which he operated as late as last year. He also cultivated an orchard of apple trees, primarily (with some pears, nectarines, peaches, cherries, and persimmons thrown in, too). He was extremely proud of these apples, and sold and shared them generously over the years. Many knew him for his annual apple cider-making parties.

 

Soon after moving to Skyline, George joined the volunteer fire department, which he ultimately captained for 32 years. In 2007 he retired from his long career at IBM (first in the machine shop, then in procurement), and in 2010 he retired from the South Skyline Volunteer Fire Department, Company 21.

 

When I was growing up, if he wasn't at IBM, on a fire call, or in the orchard on a tractor or up a ladder, he was often found cycling with my mother, or doing any of the numerous activities of parenthood. He was the best dad to us kids that we could ever hope for. He was a true friend and mentor to us.

 

George is survived by his daughter April Stearns and her husband Joseph and George's granddaughter Nia of Santa Cruz, CA; his son Dale Johnson and his partner Amy Mecchi and George's granddaughter Ella of Coarsegold, CA; his son Kyle Johnson and his wife Whitney, and George's grandchild on the way of Coos Bay, OR. He is also survived by his brother Milo Johnson and his wife Jill of Palo Cedro, CA; and his brother Craig Johnson and his wife Ramona of Colorado Springs, CO. He is also survived by numerous nieces and nephews, aunts and cousins.

 

George was preceded in death by his wife Grete; his father Milo A. Johnson; his mother Evelyn Herbert Johnson; and his younger brother Jerome Johnson.

 

This Saturday we will gather to honor and remember the life of our father, brother, uncle, friend, mentor, neighbor, and grandfather, George. We'll come together to remember the life and times of this extraordinary man who touched so many with his kind, gentle spirit.

 

September 13, 2014; 12pm

Lima Family Mortuary

466 N. Winchester Blvd. (cross street Newhall)

Santa Clara, CA

 

In lieu of flowers, please consider a donation to the Pancreatic Cancer Action Network (www.pancan.org).

Picture credit: Long-time friend, companion firefighter, and hiking buddy, Arnie Wernick, took the portrait  of George. 

Mid-August Update on My Dad: 5 Months Since Diagnosis

This is a necessary post, and yet it is one I don't want to write. I need to let my dad's community know that his condition is worsening. I keep hoping the bad days are a fluke, an anomaly, but unfortunately, the more he has and the longer they are drawn out, I'm being forced to painfully see the writing on the wall: something is shifting. Without a crystal ball, we can't know for sure if the pain and fatigue and weight loss are from the cancer itself, or the chemo fighting the cancer. In lieu of a crystal ball, he's going in for a CT scan this afternoon. Hopefully that will give some clues as to what is going on.

Simply put, he's spending more days resting. Sometimes on the couch, sometimes in the recliner, sometimes in bed. This man who very rarely took a sick day, who could always be found in the Christmas Trees or the apple orchard or cutting firewood, is now spending a lot of his time lying down. The pain he's experiencing is in his abdomen, and seems to feel a bit better if he is stretched out flat.

Fortunately, a couple weeks ago, after a particularly difficult week, he was able to go visit my youngest brother, Kyle, in Oregon. To see Kyle and Whitney's new stomping grounds since their move from Montana.

The trip was tentative until the very last second. I literally wasn't sure he was going to make it until I actually saw him board the plane (I was able to get a security pass and accompany him to the gate, which was awesome!). I felt as though I was passing the baton to Kyle in that moment.

We've got our fingers crossed he can make a similar trip to Dale's house later this month.

The main message I'm needing to convey is this: Something has changed in his body, and he might be entering what he calls "the next phase" of this illness. Till now it was difficult on the chemo weeks, but by the weekend he was feeling better, and then would go on to have a good non-chemo week. Then, the weekends after chemo started feeling more like the days following chemo. And now he isn't getting that good non-chemo week. If anything, the shift has been toward the non-chemo week before more painful than the crummy chemo week. Good days are becoming the anomaly.

Take away: He appreciates the calls and the visits, still. However, if you call you are likely to get the answering machine, and it may be awhile before he feels up for calling you back. And if you come to visit (to get some of the wonderful Granvensteins that are now ripe!), he'll greet you if he feels up for it, but there is a 50/50 chance he'll be unable to be social.

Please continue to keep him in your thoughts.

Thank you to everyone who's been sporting the purple "pancreatic cancer awareness" bracelets. It's been so fun getting requests, sending them out, and then seeing your pictures. I've mailed out 56 bracelets to date (and still have 5 sitting on my desk -- who wants them?!). Keep the photos coming! Here's a sampling of bracelets out in the world, helping to remind my dad that No One Fights Alone:

And the guy for whom we wear the purple also wears his, every single minute of every single day:

We love you, Dad!!

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"How's He Doing?": An Update on My Dad's Pancreatic Cancer Treatment

A little Q&A on how my dad's doing lately:

Q. How is George feeling these days?

A. Whenever I ask my dad how he is feeling he always says the same thing, no matter what: "So so." Translation: "I've been better... and I've been worse." He's a stoic guy, to say the least. To look at him, he doesn't look that different from before his diagnosis. Yes, he still has hair though it is thinner, and he still looks fit and healthy but, like his hair, he is thinner than before, especially in his arms and legs (chemo does a number on muscle mass). His color is good but some of that is from the chemo glow (one tends to look a little tan during treatment). But in terms of how he is feeling, most of his symptoms are either direct side-effects from the chemo, or side-effects of the the drugs to combat the side-effects of the chemo. Some of these he battles every day, some are more acute in the week following chemo: Nausea, fatigue, mouth sores, hiccups, heartburn, minimal appetite, sleeplessness. The one symptom he battles that seems specific to the cancer is a persistent belly pain. Some days it is worse than other days, but it is a near-constant companion now. This is a change in the last couple of weeks. Before it would come and go, tending to be more painful during the treatment weeks.

He is not bedridden. He's still very active: Watering Christmas and apple trees, cleaning the pool, battling gofers, tending bees, etc. He just does these things a bit more slowly, and with more breaks and some naps sprinkled in.

In June he visited family in Tennessee, and in August he plans to visit Kyle in Coos Bay, Oregon and Dale in Coarsegold, CA

Q. How much chemo has he had?

A. Last week, George had his sixth round of Folfirinox (combo of three chemo drugs). These are the big guns when it comes to chemo for pancreatic cancer. The best they've got right now. It is rough, though, and some people are not strong enough for it. This regiment is 3 days of chemo (1 day in the infusion center, and 2 days at home), and then 11 days off. Every 14 days he's in the chemo lounge. One thing we learned: Monday is crazy busy in the infusion center, so we recently switched to Tuesdays. When I was going through chemo I learned about lidocain cream to help ease the pain of accessing the port, and that when they flush the port you get the taste of the saline in your mouth -- so sucking on a hard candy at the end of treatment is very helpful (especially since that saline squirt can kick off a cycle of nausea coming like that at the end of loading up on chemo). It's been nice sharing these tricks with my dad.

Q. How much chemo will he have?

A. There is no end date set. Because he's stage IV, he'll have continuous chemo until 1) the cancer no longer responds (i.e stops being stable or shrinking), or 2) the cons to George's health/quality of life out-weigh the benefits.

Q. What about surgery or radiation?

A. Some people with pancreatic cancer are candidates for surgery (if the mass is small, not connected to vital tissue, and localized. We thought George was one of these cases, but when the lesions were found in his liver, it was determined the cancer was too late-stage for surgery to be of benefit (an analogy the community uses a lot are dandelions -- the mass in the pancreas being the weed, and cancer spores spreading like dandelion seeds in the wind). Also, the surgery (called a Whipple Procedure) is hard core. In a sense, George was lucky they found the lesions on his liver before the surgery so he didn't have to recover from a procedure that would have altered his digestion forever considering the cancer had already spread. (Note, the Whipple is not considered to be a cure, unfortunately. Pancreatic cancer is so prolific that the surgery tends to simply buy time -- the thought is that it has usually spread beyond the pancreas but it takes a cluster of 1 billion cells before it is visible on a scan.)

As for radiation, it isn't always used in fighting pancreatic cancer because in order for radiation to work, there must be oxygen in the mass(s). Pancreatic cancer is incredibly dense with very little oxygen present. Doctors and patients use it on a case-by-case basis. In George's situation, his doctors have opted against using it.

Q. How often are the masses monitored?

A. Approximately every 3 months George will have a PET scan. He's had two so far. The next one is coming up in September. The last one showed the masses to be responding to the chemo. While they had not shrunk as we'd hoped, they were at least stable -- and no new masses were found.

I asked George if there was anything he'd add to this, anything he wanted people to know. He said simply,  Thank you for all the support! I second that: Cancer fighting can be very lonely, both for patients and caregivers. It helps to know so many people are thinking about him and our family as we go through this.

Me & Nurse Ashley (who, it turns out, HATES selfies!)

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I remember three little vignettes in the Learning to Drive chapter of my teen years, all featuring my dad. I drove a lot with my mom, too, but I prefered having my dad as a teacher. He was always calm.

Fashion: Dad said, "Always wear sensible shoes and your sunglasses." Up to this point sunglasses had been singularly a fashion accessory, not a precaution against blindness, and I deliberately did not own "sensible" shoes (unless we were talking about combat boots).

Embarrassment: The time I stopped at a stop sign on the slightest of hills and promptly panicked when the car behind me appeared to pull up to nearly kissing my bumper. Fearing I'd roll back into this car when I simultaneously operated all three foot pedals, I made/begged my dad go out and explain to the driver that they had to go around me. Mercifully they did. I busied myself with something on the passenger seat to avoid eye-contact with them. My dad and I sightly vow to never speak of this again.

Late Nights: Driving home after dark after night classes at the Jr. College. Earlier in the day I would have been dropped off for classes and then later, after working all day at IBM, and going home for dinner, my dad would come all the way back down the mountain to retrieve me. I'd then slide behind the wheel and drive the 15 miles back up the winding, dark highway so I could get some driving practice in. Often he'd doze off as we drove. I'm sure we talked but mostly I remember him being tired after a day that had begun before dawn. As he slept, I'd practice shifting gears so smoothly it was almost imperceptible -- just as he'd challenged me to do. More than once he'd suddenly jerk awake and lunge for the steering wheel, thinking he'd fallen asleep while driving. I've got it, Dad, it's ok. I've got it.

Now, some 20 years later, here we are again: me in the driver seat (sunglassed, and sensibly-shod, of course), him in the passenger seat. The car's an automatic transmission now, but still I try to drive smoothly. Now it is the protests of his stomach that I'm avoiding. Up and down the same winding mountain roads of my youth. Thirty minutes to town. Dappled sunlight, the smell of the fir trees... Thirty minutes back again. The high-pitched wail of a motorcycle coming up fast behind us...

I've got it, Dad, it's ok. I've got it.

 

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Before Dinner, a Tonic-Clonic

Last November, while out doing some errands before Thanksgiving, my dad suffered from an out-of-the-blue grand mal seizure (now called a tonic-clonic). He collapsed in an automotive store, was taken by ambulance to the hospital, and then was unconscious for a week in the neuro ICU. Eventually he was diagnosed with epilepsy and prescribed anti-seizure medication. I wrote about that time in our lives here. For six months he had no seizures. Until yesterday.

....

Last night, just before dinner, I thought I lost my dad.

One minute we were driving back from the airport, having picked up my younger brother Kyle for the weekend, and the next moment... 

I've never been so terrified in all my life.

He stopped breathing and turned absolutely grey. All color drained from his face, even his eyes, staring right at me, dulled. His lips turned blue, slackened, the yell he'd delivered a second before still ringing in my ears. And although he was squeezing my hand and I knew his heart was still beating, I thought, Is this it?!

But it wasn't it. In fact, just four hours later I would sit down across from him, next to Kyle, to eat dinner together. What happened was a tonic-clonic seizure (grand mal). For fifteen minutes an electrical storm waged across my dad's brain and it was the scariest thing I've ever experienced.

This is how it transpired:

At 4:15p Friday afternoon, George and I were parked in the Wait & Call area of the Oakland airport, awaiting Kyle. At 4:25p we got his call and headed over to Arrivals. From there we made our way to George's: 880 to 92, pay our $5 and cross the San Mateo Bridge, past 101 and 280 and eventually the Crystal Springs Reservoir, wind our way up to the top of the hill, and then left on 35, we sailed all along the ridge line of Skyline Blvd, past King's Mountain and Woodside, through the redwoods and then climbed higher. Approximately an hour and a half.

And the whole way we were talking. Mostly Kyle and George, actually. I drove and enjoyed hearing them together. As we finally neared George's driveway, Kyle asked a question. Silence. I glanced over at George and he was sort of smiling, just looking out the windshield. Thinking he must have been lost in thought, I answered for him, and pulled into the driveway. At this point, George attempted to get out of the car to open the gate, but seemed to have forgotten how to open the door. He tried the window, and the locks, and finally I pointed at the handle. He got out and opened the gate.

Is he doing ok? Kyle asks. I thought so, but this is a little weird, I say.

After I park the car, George meets me at my door and clearly wants me to get something out of the car for him, but he can't find the word for what he wants. At this point I notice that his right hand is twitching. His eyes are teary. I ask him if he's ok and he says, no, not really.

OK. Let's go inside and sit down, and then we can talk about what you want. He has trouble with the keys, so I take them and unlock the front door. We all go to the living room and sit down.

At this point I'm thinking he's feeling nauseous. He just had chemo a couple of days ago. I recall that it's been a long time since he's eaten anything. I cooked us lunch at noon, but now it is close to 6p. Too long.

I ask him how he's doing. Again, he tries to talk about what he wanted me to retrieve from the car, but again he can't find the words he's looking for. I acknowledge this and notice again that his right arm is really starting to shake.

This doesn't seem right, Kyle says. I agree. Pop, you want us to get you some help? he asks.

No. Ba, ba, ba, ba, ba, ba, battle! Battle, battle, battle, battle, battle, battle, battle, battle!

He's looking right at me, a small smile on his lips, which I take for baffled frustration. The limb shaking is increasing, and then suddenly he's rubbing his right temple very hard.

Battle, battle, battle, battle, battle, battle!

Kyle is dialing 911. My dad is having a seizure. 

I lunge toward George. I'm on my knees next to him, my hands on him: You're ok. We're getting you some help. You're going to be ok, dad. You're having a seizure. It's ok. Keep breathing. Don't worry. This will pass. You'll find the words.

Battle, battle, battle, battle, battle, battle!

Then he's scratching his stomach hard, all his limbs are twitching. I feel the muscles in his arms so rigid. Now he's not speaking just shaking. Then he relaxes in the chair, but he's not present. He's not unconscious, but he's not responding to me or Kyle at all. Wherever he is in his mind he has something in his hand that he really wants to put on the coffee table. He's pinching the air tightly between his thumb and fingers, reaching out with it. Kyle tries to take it from him, we tell him we've got it, but he's not aware of us at all. It takes all my strength to keep him from falling face first into the coffee table. Finally he relaxes back. 

And then another wave of shaking rolls through his body and he arches his back. He head is back and he's looking up at the ceiling above me. His eyes widen and his mouth opens in an O. Then, his eyes wide, he yells and starts full-body convulsing. His teeth clench and the veins in his neck are popping out. Hard breathing is replaced with sudden silence, no breathing. The color drains from his face and eyes.

One minute.

Two minutes passes.

And then he's sucking air in and out of his nose. His teeth are still clenched. Foam collects at the corners of his mouth. His eyes are rolled back. His legs are straight, rigid. But the shaking has stopped. His hand grips mine.

Kyle is reporting the inhalations to the dispatcher: Now... Now... Now... Now...

Finally his body relaxes. And then the fire department arrives: First the volunteers -- one a friend -- and then the Cal Fire crew. Kyle and I move back: Help is here!

It's my dad! He's right in here!

We pass the baton. Vitals are taken, questions asked (Do you know where you are? Who's the president? and Has this happened before? What medication is he taking?). And 28 minutes after Kyle's initial call, the ambulance arrives. By this time, George is back. He's fuzzy, but following commands, answering the questions as best he can. And then he's going down the hill in the ambulance.

We'll meet you there! We're right behind you!

 Holy shit.. what just happened? Kyle and I look at each other. Wow... In a daze we run around the house collecting a change of clothes (for him), quick snacks (for us), meds (his), a dog treat (Ashley's -- thank you for not tasting any of the firefighters!). And then we're off -- following the ambulance down to the hospital, through the automatic door under the big red EMERGENCY.

And when we arrive he's fully back. Totally himself. It's incredible! Such a relief!

In Emergency, a baby is crying behind one curtain, an old woman behind another, and there is so much activity. Nurses and staff everywhere. Lots of noise. But in the midst of it all, there is George is Bed #7, smiling, talking to a nurse. He sees me across the nurse's station: April! Come over here a sec! What's this thing in my chest called again? Hi, it's a Mediport.

After an EEG, a head CT, blood work, a chest x-ray, and a conversation between the ER doctor and the oncologist, lots of waiting, a nap (George), lots of texting and phone calling (Kyle and I to family and concerned neighbors), the ER doctor calls the seizure a "red herring; nothing to worry about; a break-through seizure."

And then, incredibly, exhausted, starving, dazed we are heading home again. We are walking out of Emergency, through the automatic doors, under the big red sign. No one stops us. No one insists on a wheel chair, even.

And so we go home, and have dinner. Four hours late.

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It goes without saying, I'm not the only one heartbroken over my dad's cancer diagnosis. He has a whole community grieving now, but more than that, I have two younger brothers. We've been through a heck of a lot together, and I cannot imagine facing any of this without them. Today I'm posting, with his permission, a letter my youngest brother, Kyle, wrote to our family recently. ~April

____________________________________________________________

Life is not fair.

 

Growing up I heard these four words often. When my soccer team lost. When my brother got to do what he wanted and I was left behind. When I had to dress nicely for holidays when I would have much rather run a-muck in the woods. Whenever disappointment came knocking and things didn’t go my way. “But, why?” I would ask. “Repeat after me,” Dad would say, “Life is not fair.”

 

Even now I hear the words every day. Still in my Dad’s calm, soft spoken way, only now they are generally in my head. Thoughts, echoes from years gone by, the words are just as true today as they ever were. There are many things beyond my control that conjure up these words, but more often than not the reason I am thinking them is cancer. Dad’s cancer.

 

Dad’s Cancer. The very words are hard to write, harder still to speak. My Dad has cancer. How can it be? This man that almost never took a sick day. This man that lead his volunteer fire department for 30 plus years. This man that has been an everyday hero to so many in our community, a symbol of strength and leadership. This man that embodies hard work and self-discipline who worked long weeks for a major worldwide corporation for years and still found the energy to run a successful small business and farm on the side. Who provided for our family despite ups and downs at work and at home. Who taught me that if you work hard enough anything is possible, as well as the importance of taking time to enjoy yourself every now and again. This man who battled back from a bleed in his brain, and the resulting brain surgery. Who fought to talk clearly again, function normally when the doctors were not sure if he ever would. This man who survived a grand-mal seizure less than a year ago and was unresponsive in the hospital for nearly a week. Who refused to lie idly in the hospital and got scolded by the nurses for wandering the halls. This man that has never been known to drink more than one beer in a sitting, who has hiked nearly every day of his life, who has done everything they say to do to live a long and healthy life, this man has cancer? How can it be?

 

Yet I know how. I know the answer before I even ask the question. Life is not fair. The words play and replay in my head, haunting me with their simple truth.

 

Even now in the face of all this, Dad is working hard, showing us what strength is. Never touting his accomplishments, just quietly teaching us what to do when life gets hard. He is undergoing Chemotherapy, poisoning himself in an attempt to slow the growth and spread of the cancer. He is buying time for us. Time to spend together, time to tie up loose ends and make things right. Time to see to unfinished business. And time for us to make our peace with it. How much time do we get, nobody knows. We are hoping if Dad continues his track record of being an outstanding, resilient, tough SOB, we’ll get a year or more.

 

And yet more time, that’s all we want. More time for family, for love and friendship and togetherness.

 

My Dad has cancer and life is not fair.

_____________________________________________________________

Kyle Johnson and his wife Whitney are incredibly talented, which includes both being
professional foresters. They recently left a big garden, 20 chickens, 3 honeybee hives, and a handful of fruit trees in landlocked Montana to move closer to both Kyle and Whitney's families. Like fish out of water (moose out of the forest?), they are now getting their bearings in the coastal rainforest of Coos Bay, Oregon. You can read about their Big Sky adventures on their blog: The Birds and the Bees. From hunting and butchering venison, to canning and preserving garden vegetables, to beekeeping and chicken farming, with a little responsible forestry thrown in on occasion, it's a great read.  Take a moment and check it out! (Also, Kyle was a guest blogger here a year ago where he wrote about beekeeping in an urban environment.)

 

Also, check out Whitney's hand made jewelry and all natural lip balms at her website Montana Wild Designs.

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Early on in the diagnosis days of my cancer journey, Joe and I met Doctor #2. The surgeon of the team. Eventually there would be three: a chemo oncologist, a radiation oncologist, and a surgical oncologist.

 

His office was messy, with papers and books all over, like you'd want to see if you were assembling your Cancer Dream Team. But he seemed to have a life, too. I noted the painting of a wintery Central Park, the iPod docking station, and the terrific view of the hospital out the window.

 

Looking at the second floor windows over there, I knew from experience that babies were being born in the dimly lit, warm, cocoon-like rooms as we spoke.

 

I longed to be there instead of in this white-walled, fluorescent-lit, medical journal-strewn office.

 

Let's see, he said. Joe, the doctor, and I crowded around his computer monitor to see the black and white moonscapes on the screen. The landscape of my defective breast. The tumor was there, a giant black crater. Like a black hole. Looking at it was to sink into it, all the oxygen slowly leaving the room.

 

The doctor, having done it a million times before, described lumpectomies versus mastectomies – radical versus modified. Reconstructive surgery versus not. He handed us brochures that were as hard to connect to reality as it is to read the safety guidelines on a plane and actually believe you may need to utilize that information.

 

Then he started to ask me rapid-fire questions and punch numbers into the keypad.

 

Family history of breast cancer? Yes.

How old are you? 35

Type? Ductal

HER2 positive? Yes.

Stage? 3

Grade? 3

Tumor size? 7 cm

 

Then he hit 'print' and there in black and white, my stone-cold prognosis. Two sheets. One had a graph for likelihood of recurrence. One had a graph for the likelihood I'd be here to celebrate the fabled 5-year mark.

 

Graphs that illustrated a glass half-full / half-empty approach to how much time I now could expect to have with my child, my husband, my friends, my family. Future children. Or lack there of, I suddenly realized.

 

For a long time, those two pages haunted me.

 

I cried and raged about them. They snuck into my thoughts when I thought everything was ok. I lay awake at night long after Joe and Nia were snoring, thinking about them, watching the wind sway the giant Oak tree in our backyard. Finally one night when I was crying too hard to sleep, Joe told me to go get them. Get the f-ing papers! So I went and pulled them out of my file box. (You know, where you keep the really important documents.) I brought them to Joe and he looked at them briefly and then told me to throw them away.

 

I was afraid to. But I also had been waiting for this – permission to destroy this death sentence. 

 

I did. And then I put the stats out of my mind. I wasn't even statistically supposed to get breast cancer in the first place (not only had I breast-fed my child, but I'd nursed her the very morning I was diagnosed!) – why should I expect to fit into a statistical graph now?

 

And so a year went by. I had treatment, surgery, radiation.

 

Another year went by and my hair grew back, I resumed working, parenting, the regular ups and downs of normal life. My follow-up appointments became further and further apart. The office staff changed at my oncologist's office and it no longer felt like a Cheers! episode when I walked in (for better or for worse). I learned to live with aches and pains and not to fear cancer at every sneeze.

 

And then, just when I'm starting my third lap around the sun after diagnosis, my dad up and get's cancer.

 

And a stranger told him his prognosis. And suddenly the graphs, the timelines, the stats all seemed VERY important. And I'd what?! Thrown mine away?! I suddenly felt like I was driving the wrong way down a one-way street at night with no headlights (but trying not to let anyone else in the car know what was happening -- yeah, I'm fine. Everything is fine. Why do you ask?).

 

Then, after  a few weeks I couldn't bare it anymore. I went online to LifeMath.net. (Seriously. “Cancer web-calculations for medical professionals.”)

 

 I typed in my data this time, and out came a prognosis. Stone-cold, black and white. Life math.

 

I shut my laptop and walked shakily out of the office.

 

…

 

Three months ago, Joe and I signed up for a parenting class. When my dad's diagnosis came, I considered canceling it, but then thought we might need some extra tools in our back pockets for helping Nia through this time in our lives. And so we went through with the class: 2 hours, every Thursday, for 6 weeks.

 

As expected, I took away a lot of helpful hints for handling the stresses of parenting.

 

But one thing I hadn't expected was to learn a few tricks to help me function – not only in parenting, but in general. One such trick was aptly called Listening Partnerships – basically talking without interruption to someone willing to listen and provide warm (largely silent) support. The goal is to release tension, blow off steam, without someone trying to offer suggestions or make it better, so that we can go back to the business at hand without any emotional hang-up baggage/triggers getting in the way (this works for kids too).

 

So that morning that I calculated my own life expectancy, I phoned a friend. I just did something really, really stupid, I confessed. Got a second?

 

I told her what I did. About throwing away the original numbers, and then about the website. And then, tentatively, I asked if I could tell her my prognosis. I had to. I could not be the only one knowing this number, as selfish as that is.

 

I heard her catch her breath. The tears silently streamed down my face while I waited.

 

And then she said, “Yeah. Ok. But since when do you play by other people's rules?! I mean, geez, did you even tell it your dad has cancer and your mom is already dead? Hell, statistically speaking, you probably should never drive a car again!”

 

Through the snot and the tears, a huge laugh burst out of my lungs.

 

And suddenly the black and white shifted back to color with shades and depths and nuance. And I put one foot in front of the other and resumed the business of living.

 

 

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