A Touch of Anaphylaxis

Thanksgiving 2009:
Just say no to anaphylaxis.

On Tuesday, my second round of chemo started out on the bright side:  my blood counts were good enough to proceed, my medical oncologist sort of offered me a job, the UCSF Infusion Center was running ahead of schedule, and my nurse got my IV started with one stick.  I was settling into an episode of Parks of Recreation when all of a sudden my face felt aflame, my chest felt compressed by a buffalo, and I started wheezing.  Then came intense abdominal pain. 

"Oh shit," I thought, "anaphylaxis."  


Everything felt oddly calm.  Many Nurses ran in, there was a lot of commotion, but everything was molasses slow from where I sat.  I remember having a few fleeting thoughts such as, "Where is the epinephrine?  Is the airway cart (with intubation supplies) within reach?"  But I don't remember being able to speak.  And then I don't remember really caring about the answer to those questions.  I was awake but I didn't feel there.  Then came a bunch of IV medications and then I fell into a fluttery twilight.

  

I was stubborn here too.  This was the summer I only
 wore my swimsuit backward.  Andrea seemed to like it.

Fast forward about three hours, after a re-challenge at my request (yes I am stubborn), and a second, milder allergic reaction, and that was the end of Taxotere for me.  My Mom handled everything with grace.  Including carting me out of the Cancer Center in a wheelchair because I was too wobbly to walk. 

The ride home was like being five years old again coming home from the county fair, way past bedtime, clutching a stuffed animal won at the ring toss.  You know the stop lights, turns, and traffic pauses signal your approach home, but you can't open your eyes to confirm it.  Then suddenly I was home, so happy to see David and the dogs and crawl into bed with my jeans and shoes on. 

So now, two days later, I am at UCSF again with my Mom and Dad for a second attempt at my second round of chemo but this time with a new agent called Abraxane (paclitaxel) to be followed with the same old Cytoxan (cyclophosphamide). 

In medical training, and only amongst residents, sometimes we would try to lighten dark medical situations by saying "Ms. M has a whiff of tuberculosis and AIDS."  Or "Mr. W has a touch of multi-system organ failure."  Obviously you can't have a whiff or a touch of any of these conditions, but in the middle of the night with just you and one other resident in the hospital running the inpatient medicine service, it felt softer, almost safer, to throw in "a touch of."

So, I had a touch of anaphylaxis.  And my Mom carried me home.
 


Except on Tuesday I was sans blankie. 
And we were not on the Texas Farm.

 

The Half Taco

 

Six months ago yesterday, David and I went out on our first date to our neighborhood CarnicerIa.   We got two plates of tacos to go.   So yesterday we celebrated our Half Taco.  Between my chemo and David's two jobs, including being the new Head Coach of the SRJC Cross Country Team, we did little planning.  My parents took Luna and Olive, we packed up the car with camping gear, and hit the road toward Point Reyes National Seashore.  All of the SF Bay Area beat us to the first-come, first-served camp sites in Marin County so we stepped into plan two: rambling around doing whatever the heck we wanted the rest of the day with the goal of using a whole tank of gas and seeing as many new things as possible.  First destination:  Mount Tamalpais. 

 

I was not up for a long hike but I was determined to get a view.  We scrambled up to a shaded knoll along Mt Tam's crest. The day was so clear that you could see the top of the Golden Gate Bridge peaking above the Marin Headlands, San Francisco, Alcatraz, Sausalito, and all of Oakland and Berkeley across the bay. To the west you could see 100 miles into the Pacific and every sailboat, freighter, and fishing vessel dotting the sea in between us and the horizon.

Next we found our way to Bolinas. This hidden, unincorporated surfing town was built on a spit of land going into the Pacific.  I had read years ago that reclusive locals took down all road signage so as to make it more difficult for outsiders to find their town.  I can see why. The main street street has an eclectic combination of a historic saloon, oyster joint, cafe, community library, grocery and mercantile.  There were lots of friendly, unaccompanied dogs roaming about that clearly new every inch of town and every resident.  We walked to the end of the peninsula were the quiet Bolinas Lagoon meets the roiling Pacific demarcated by a fleet of seasoned surfers of all ages.  The Inn above the Saloon was booked so we headed north on Highway 1. 

In Olema, a few miles from Point Reyes Station, we stumbled upon the most delicious and messiest grilled fish tacos I've ever eaten and sealed our Half Taco anniversary celebration. 

We continued north on Highway 1 and skirted the northeast shore of Tomales Bay.  The sun set producing a spectacular color show, the likes I have never seen since leaving New Mexico.  We stood on Bodega Head as the wind whipped and night fell over the Pacific. 

 

We took Bodega Highway back to Santa Rosa and ate each component of S'Mores one at a time while listening to David's mix CD he made for our adventure.  Now the sixth time played that day, we knew all the words to all of the songs.  And we sang. 

In residency, every day was full.  And although each day was hard, when you got to go to sleep, you went to bed knowing you had really lived that day, even if things went terribly wrong or were frustrating.  I relaize now there was a certain satisfaction in that. And maybe that is what keeps residents going even though as a resident, I remember longing for just one unfull day.  Now I realize that what I really needed was an unplanned day.

David and I went home and pitched the tent in our back yard.  We left the rain fly off so we could see the stars through the meshed ceiling.  Traffic on the 101 whirred in the distance.  We heard someone playing the bongo drums then later a steel guitar somewhere downtown.  A jet flew silently overhead.  A mess of stars glinted above it all.  I remember no day more full of unplanned beauty and laughter.  I can't wait for the Full Taco.

You have more than you think

When you read this blog post title I imagine that many of you thought this entry might be about inner strength, community support, or spiritual wellness.  Although the title applies to those important arenas as well, I am referring to hair.  My hair. 

I have always thought of myself as having fine hair.  And compared to women with curly, voluminous hairdos that I envy, I didn't think I had that much of it.  So, when that first clump of hair fell out about a week ago, I felt a moment of panic and then, as medical training prepares you to do, I immediately turned my brief panic into practical stoicism. "Ok, here we go, I am going to be bald by sundown.  I must locate my bandana." 


Exhibit A. Penny for scale.
A few hours worth of hair loss.

Then the next day came.  I woke up with hair in my mouth.  My scalp ached (this is normal and now I understand what my patients mean when they say their hair hurts).  More hair fell out onto the floor and into the bathroom sink as I brushed my teeth. But when I looked in the bathroom mirror, I still had a good head of hair.  The day went on and hair fell into my clothes as I dressed and into my eyes while driving.  I thought, "surely, by nightfall today I will be bald."  But nope. 

This shedding has been going on for nearly a week.  I have out competed Luna and Olive.  Yet still I hair remains.  Sure, I am developing a bit of a friar look because the crown of my head went first, but THERE IS STILL HAIR ATTACHED TO MY HEAD.  Once again the human body amazes me.

Hair, I have more than I thought. 



The Anti-Fallout

Mark, myself and my ponytail.

My hair is going to fall out within the next few days so I decided to beat chemo to the punch. Both of my chemo agents cause hair loss but Taxotere often causes sudden hair loss.  Meaning you wake up one morning with most of your hair in your bed or you take a shower and clumps let loose in the tub.  One of my own patients had hers fall out in the supermarket.  That process seems rather horrifying if you hair is 12 inches long like mine. So take that chemo, I foiled your plans!

Lynne arranged for my hair extravaganza at an Oakland salon called La Nana nestled in the back of a flower shop.  Mark, quite possibly the best maker of hair experiences on earth, introduced himself with a hug outside the salon as Lynne and I were looking at mini-pots of succulents for sale.  Oakland could not be hipper.

First step, I donated my hair to Locks of Love http://www.locksoflove.org.  Mark tied my hair into a pony tail and then lopped it off.  He did this unceremoniously.  Mark put my ponytail on the counter, looked me in the eye and said "ok then! Let's go to the sinks."  He gave me a scalp and neck massage while washing my hair during which I might have drooled a bit I felt so relaxed.
Second, he gave me a pixie cut so when my hair falls out, there will be just a little to fall out.  During the course of the hair cut he gave me three band recommendations, told me people pay him a lot of money to get my natural hair color, adjusted the Pandora station to a mutual favorite band, and told me I was going to look hotter than Sigourney Weaver in Alien after my hair falls out because I have way better bone structure.  Mark had to pause my haircut twice because we were laughing so hard it was unsafe to continue with the scissors so close to my head. 

David, thanks for the pep talks the night before when I felt nervous and sad.  Lynne, thanks for turning what I thought would be the worst haircut of my life, into the best. 
Mark of La Nana Salon, I wish I could get my hair cut again tomorrow.

Addendum:  I must fess up.  Jerry, David's Dad, was the first to beat my chemo to the punch.  Nice work Jerry!

Flight

Ten years ago yesterday I moved to London with my monolingual Spanish-speaking boyfriend, Sergio, and about $400 between us.  We each carried two duffle bags filled with clothes, a handful of family photos and mementos, my 35mm Canon camera, and his acrylic and oil paints. 

We decided to fly on the first anniversary of 9/11 because the flights were $300 cheaper than the day before or after, and it was about the right time anyway.  My classes at the London School of Hygiene and Tropical Medicine would start in ten days.  The school recommended seven days to find a furnished flat and we added an extra three to open a British bank account and cash my Rotary scholarship check in order to pay my tuition before orientation.  Ten days seemed tight to accomplish these tasks in a city neither of us had ever stepped foot in, but we couldn't arrive earlier because each day in London was costly. 

Flying on 9/11 did not put Sergio or I on edge, but it did everyone at the airport.  Passengers fumbled with their luggage, airline employees made keystroke errors when attempting seat assignments, and the security line was the longest I had ever seen. 

While waiting to check in, a local news crew worked down the nervous line interviewing people about their destinations and decision to fly on 9/11.  Soon they made their way to me.  Sergio, my parents and I quickly became the center of news attention.  They had found a story.  Not too many people move to London departing from our small Dane County airport.  And not too many parents 'allow' their twenty-three year old daughter to do so on 9/11 with a brown skinned man who does not speak English. 

At each security check point, the authorities padded down Sergio and thoroughly searched his carry on bag.  When they learned he did not speak English and we were traveling together, they questioned me about our backgrounds and travel intentions.  Sergio and I arrived in London exhausted and embarrassed for my country. 


Unable to handle our luggage on the hour long tube ride requiring three train changes, we spent £60 on a cab to Battersea Park where our weeklong room sublet awaited.  The cab dropped us off on the High Street, traffic horns blazing as we blocked traffic. We quickly hulked our luggage into a pile on the sidewalk and rung the doorbell of the flat.  No one answered.  I doubled checked the piece of paper with the address, we looked expectantly at the locked door and rung the bell again.  No one answered.  We sat on our luggage for a an hour, staring into space hoping the guy we had made arrangements with would show up at his flat and let us in.  No one came. By now it was noon, London time.  Sergio and I hadn't slept in over thirty hours.  We had about $300 (£180) left. 

We located a Travelodge three block away.  We took turns carrying the suitcases down the road, resting along the way because now our arms and backs ached and we were delirious.  Then five £20 notes just floated from my hands to those of the Travelodge clerk. 

Sergio closed the motel room window shades and ten hours later we awoke atop the covers, shoes still on, and limbs numb from lack of movement.  I drew open the shades and saw a different London.  High Street was aglow.  A pair of women in heels clicked along the sidewalk below.  One woman threw back her head and laughed.  An oncoming car's headlights illuminated her face for a moment. I looked back at Sergio and smiled.


That is how the best year of my life began.  The best year of my life until now.  

David and I finding eachother is just the beginning.  Have I got serious plans.

One chemo down

My Mom sat next to me at the UCSF chemo infusion center on Tuesday for for my first go around.  I knew why my chemo nurse was gowning up, putting on rubber gloves and a face mask before she hooked up first my bag of taxotere.  I also knew the steps that had occurred prior to the drugs being delivered to my chemo chair, as they call it.  I recalled from medical school that the hospital pharmacists, also gowned, gloved and masked, carefully prepared then loaded the chemotherapy medications into their plastic bags under a laboratory hood that vacuums away harmful fumes. Pharmacists and nurses take these measures because they are handling toxic poisons. 


Doesn't chemo look so simple here?

My Mom did not know this, why would anyone outside the medical world know this, so she asked my nurse about her gown, gloves and masks.  I went 'la la la' in my head during their conversation because in about 4 minutes that toxic taxotere was going to flood my veins.


My chemo nurse, Heather, could not have been better.  She exuded wit, light, compassion and appropriate obsessive-compulsive behaviors that are necessary for an oncology nurse to care for her patients safely.  She tripled checked every step and medication, then watched me like a hawk for any adverse reactions.  She knew when to tell a funny anecdote and when to leave me alone to watch "Blades of Glory" on David's iPad.  But best of all, she did not dole out platitudes or condolences.  Instead when various depressing things came up throughout our 4 hours together, she looked me in the eye and said, "Well, life is just absurd isn't it."  To this, I could whole-heartly agree.





see you at the martini mixer in 60 years

At the end of my chemo session she added, "My best friend and I tell each other that after this life, whatever happens next, we will sit together with a cigarette in one hand and a martini in the other and exclaim to one another, 'well what the heck was that all about!'", gesturing wildly with her hands.  She added, "Neither of us smoke or drink but you need the cigarette and martini to get the full affect, don't you think?" as she disconnected my last chemo bag and disposed of it in the large biohazard bin.   

 

Three additional thoughts on unexpected chemo side effects:

 

1. When you get a touch of poison oak on your ankle the weekend before starting chemo, it turns out the high potency steroid you have to pre-medicate with prior to your chemo to help prevent anaphylaxis is a nice two-fer.  No more itchy ankle!

 

2. When your car is side swiped while parked in front of your home the night before your first chemo, you don't care when you find your rear view mirror on your front porch.  Especially because your Dad is going to take care of the police report, insurance claim, and taking it in for repairs.  And what do you say to Geico when they tell you about the $500 deductible?  Ha!  That is nothing compared to what you paid to get your eggs extracted and frozen at UCSF three weeks ago.  Take it Geico!

 

3. When you wake up from another 4 hour afternoon slumber in the days following chemo you find you have unexpectedly re-written David Bowie's Space Oddity song that starts "Ground Control to Major Tom" to "Poison Control to Dr. Les" and all the lyrics thereafter, while in your sleep. Unfortunately your saline filled breast expander slows you down just enough to not reach your bedside pen and paper to jot down the new, fleeting lyrics as you awaken.  Trust me they were good.

 

Final thought:

Dad, thanks for agreeing this print was unacceptable chemo waiting area artwork. 



iPhlop

A week and a half ago, I was climbing into bed and dropped my old flip phone to the ground when reaching for it to set an alarm.  Had it been the first, or even tenth time I had dropped this four year old phone, it might have weathered the plummet.  However it was the third time I had dropped it that day, and perhaps its five hundredth fifty first drop in its life time, so it split in two.   

In residency, I never just sat and talked on the phone, time was too precious.  I talked and did the dishes, talked and walked Luna along the creek path, talked and made my bed, and talked and sauteed damn kale and Swiss chard for dinner trying my best to keep cancer away. 

Two days later I was in a sour mood.  A few hours before I had a follow-up plastic surgery appointment at UCSF. I had another 100mL of saline injected into my breast expander, a part of the reconstruction process.  The breast expander is a thick plastic bag with a quarter sized rubber port on the front and a quarter sized magnetic disc opposite the port against my chest wall.  My plastic surgeon uses a magnetic pendulum to locate the port beneath my skin so he can stick the needle for saline injections into the port rather than accidentally bust a whole into the plastic bag-like expander. 

From a scientific perspective, the whole contraption is quite clever.  From a patient's perspective, it feels like a water balloon is blowing up my chest wall.  It is not painful, but it is a lot of pressure and stretching that becomes more acute once I am standing and using my right arm.  The expander is wedged between layers of my pectoralis muscle so when I use that muscle, which we use for most upper body movements, I feel it in my new pseudo water balloon breast.  That expansion plus car sickness in the traffic jam on the ride back to Santa Rosa from San Francisco led to my less than pleased mood on my arrival home.

David said, "You know when you go to the dentist as a kid you get a sticker or lollipop as a reward.  I think that when you are an adult with cancer and you get 100cc of saline injected into your chest wall you get an iPhone."

One hour later, David and I walked out of AT&T with an iPhone in a durable rubber casing typically purchased by construction workers because it can protect the phone from a three story fall. Perhaps the phone can survive living with me. 

I walked to the car thinking, there are some pretty great perks to being an adult.  I also thought, there are also some perks to the urgency created by not having a functional phone in our phone-ccentric world and also having your best friends gently coax you toward smartphone ownership for the last 18 months.  Lynne and Katie carefully collected dry kindling, my phone breaking in half provided the match, and the 100mL of saline was the lighter fluid that together lit the fire under my bum required for me to step into the 21st century. 

Look forward to future posts with action shots and video.