Whatever Gets You Through the Night

I really didn’t want to come back to the hospital this time.  I felt the fever coming on, but I ignored it the first 24 hours, hoping my temperature would stay low and go away.  The second day, I started to feel guilty and sicker as my temperature climbed a little higher to 101°F, definitely passing the critical threshold of 100.4°F.  Finally, when the kids were in bed on  Monday night, I felt obligated to telephone the on-call hematologist.  I entertained the fantasy she would tell me to wait a day and see if the fever would come down on its own, but her reply was unequivocal.  “Come to the Stanford ER immediately.  You can also to go to any of the ER’s along the way if you start to feel worse. Usually I say 30 minutes maximum, but I’ll let you drive to Stanford if you leave now.”

The forbidden garden is changing. Lots of plants have been removed.
The forbidden garden is changing. Lots of plants have been removed.

After a little texting exchange with the neighbors, the kids were covered, and Mike and I left for Stanford with my overnight bags packed.  On the way I felt low.  As my collection of less favorable hospital experiences was growing, I was finding it harder to stay positive about more hospital time.  I couldn’t help but visualize the sleepless nights, the desperate roommates.  I had survived, even learned, from these experiences, but I wasn’t eager to repeat them.  Somehow I had really convinced myself if I truly expected the neutropenia wouldn’t cause a fever this time, I could stay home.  But despite my best attempts at acting like I would remain at home, the fever came anyway.  The half-moon gleamed in the night and we arrived sooner than I was ready at the ER valet (even with the added 10 minutes around the construction site to the back of the hospital).

Mike kindly walked me in and waited through the check-in process.     But when we sat down again to wait, I told him to go.  This is all there  will be, lots of waiting.  You should go home and sleep so you can wake up and take care of the kids.  And so reluctantly he did.

Strangely as I spent more time in the ER waiting room, my gloomy mood began to lift.  For one thing, I felt my fever coming down, which took the headache away.  I knew my fever would come down as soon as we arrived at the hospital, but even that fact was not making me regretful.  The waiting room was not nearly as crowded as last time.  I had packed a little less stuff, and I no longer felt self-conscious about bringing my bags.  I knew where I was headed.

The ER staff offered to let me sit behind a screen away from the general public, a kind of VIP waiting room, where they would get blood work started even before my ER room was ready.  Luckily, I was engaged in a really great novel and was happy for the chance to keep reading.  Soon a stylish phlebotomist arrived and together with a really young energetic nurse they did the double draw together as efficiently and silently as a dance.  The only words they said to one another were discreet compliments, and I wondered if they were dating.  I even got to do a urine test before my room was ready.

When it was time to move to a room, my kindly nurse carried my backpack.  As we passed several gurneys in the hall with people trying to sleep or holding their pained faces, I walked comfortably to a private room.  Being neutropenic has its advantages, I thought guiltily.

To my surprise, the medical staff led me back to the same pediatric room I occupied when I was treated for my blood clot during my first Stanford ER experience.  However instead of kindling bad memories of confusion, pain and endless waiting, the old room, with its white, white walls and always-on TV was comfortingly familiar.  The nurse told me about the gown on the table, but this time I didn’t even ask if I needed to put it on.  She pulled the curtain closed, but not the door.  I peaked my masked face out into the hallway.  Can I take off my mask in the room, I asked her, and she said “Yes of course!” and I was quite sure she didn’t understand fully what I was asking.

I did take off my HEPA-mask, but only after I closed the door myself and sanitized my hands and the door handles very well.  Next I changed into my own cozy hospital clothes, not even considering the hospital gown.  Then I sauntered confidently to the TV and found the manual power button and stopped the silent visual racket.  Ah, how I have grown, I thought proudly.  The problems that plagued me on my first visit – freezing in my gown wrapped while waiting endlessly for nothing to happen, staring at the muted day-time courtroom drama all day whether I wanted to or not, wishing the nurses would shut the door and dim the lights, watching my phone (my only connection to the outside world) slowly lose its power and being afraid to ask about using the electrical outlets in the room to charge it – now seemed so silly.  These problems were so fixable once I had the confidence to take control of my environment.  Of course there is a delicate balance of knowing how to take control without looking like you are taking control.  From what I have gathered, the trick is to always smile and use kindness with your nurses and doctors.  Engage them in casual conversation, be cooperative for routine things that can’t be changed liking taking vitals, don’t fight them if they have a personal hang-up with minor inconveniences like hospital socks or bed rails up (you can always change these things when they leave the room), gently educate them if there is medical information they need to know (my blood pressure can only be taken on my legs, I need platelet transfusions at 40 not 10), and if there are any medical disagreements just kindly but firmly ask to consult your doctor first.

Before I even had a chance to sit down, the very young ER resident entered the room.  Is he even twenty-one, I wondered?  He asked me what brought me here.  I say directly, I have a fever and I am neutropenic.  He turned white and said, “I’ll be right back.”  A few minutes later, a portable HEPA-filter air machine was being pushed into my room.  If you haven’t seen these machines, they are about the size of a large gorilla and make a pleasant sleep inducing ambient noise.  I like to think of the big white box as a giant sound machine tuning out the chaos of the hospital.  Following the HEPA-machine and its masked attendants was the young resident, this time wearing a mask himself.  “I just want to protect your safety,” he explained.  I was pleased.  After the routine questions and health checks (my symptoms, my fevers at home, listening to my heart and lungs) he told me what I already knew:  the team would do a neutropenic work-up with blood tests, urine tests, chest x-ray, virus nose-swab, and most likely start me on antibiotics and admit me to the hospital.  This time it didn’t even occur to me to ask when things would happen.  I knew he had no idea.

How things proceeded after his initial visit have become a blur, probably because of the late hour and the exciting events that followed.  I know there were a handful of additional visitors – an admitting staff, a personal belongings check, some nurses, maybe some more doctors.  I remember someone telling me it was really a good idea I came in and praising me for my decision which made me feel good.  In the end the doctors decided to start me on two antibiotics intravenously through my PICC line.  A nurse came in.  Apparently my regular nurse (what regular nurse?) was on break and this one was covering.  Perhaps it was my mistake to ask if the two antibiotics would be administered at the same time.  I wasn’t trying to tell her what to do, I was just curious how it worked.  She looked at me with interest and said, “Maybe I will run them at the same time.  Do you have two lines?”

In no time, two antibiotics were running and she left the room with only a brief reminder to call if anything felt unusual.  I thought nothing of it, she turned out the lights and I tried to tuck in for a little bit of rest, if not sleep.

I must have fallen asleep at least for a few minutes but I awoke with a start convinced there was something dripping on my neck.  I started to itch my neck.  As I awoke into partial consciousness, I realized my head was burning and every hair follicle needing to be itched at once.  I was positive I was allergic to the pillow.  I sat up abruptly.  I needed to see myself in the mirror, but as I awoke fully I realized my situation.  The IV pole was attached to my bed with relatively short fluid lines going to my arm and both bed rails were up.  I definitely could not reach the light switch near the door even with creative acrobatics.  In a panic, I crawled over the head of the bed towards the sink and mirror, looking for a light.  No switch near the sink either.  But my mild physical activity set off the sensor for my continuously monitored pulse.  I  looked at the value – 190! 140! WHAT IN THE WORLD!! My pulse is almost in the 60s, 70s, maybe 90s if I am moving around moderately.  No wonder the monitor was beeping.  I quickly tried to navigate the wires and fluid lines, making my way back into the bed over the head so I wouldn’t get in trouble.  At the very moment I got back in bed, a (different) nurse came in.  “Just checking to see how you are feeling,” she said casually, apparently unaware of the beeping pulse sensor and my dangerous escape attempt.

I am really itchy, I said frenetically itching my stubby hair, knowing I was probably making it worse by itching.  I need to stop itching, I thought.  I look crazy.  But I couldn’t stop.  The moment I stopped itching, the intense burning started again and I could think of nothing but itching.  I didn’t even have big enough hands to itch my whole head and neck at once; I had to keep rotating around.  People told me my buzz cut might get itchy, was this what they meant?  It couldn’t be.  Maybe it is psychological, I thought, the more I itch the itchier I get.  I tried to stop but stopping was impossible.  The nurse kept asking me questions but I could barely focus.    She turned on the lights, “Are you always this red?”  I am generally a red person but I am not always itchy, is all I managed to say.  “I am getting you some benadryl and a doctor.”  In a very short time she returned with a syringe.  Conveniently, one of the antibiotics had finished its drip.  I was starting to feel very warm with a sort of pressure (or lack of pressure?) in my neck and head.  It made me feel agitated and a little confused.  She disconnected the line and started pushing liquid benadryl into the free line.  Will this help the itching pretty quickly?  I asked desperately, trying to momentarily suspend my ridiculous itching while she worked on my PICC line.  “It should kick in pretty quickly, give it 10-15 minutes.  You may feel flushed from the Benadryl.”  I was confused.  I already felt quite flushed.  More like beet red.  The “doctor” walked in, another new face.  He sat casually on the trashcan.  He asked how I was feeling.  I told him, Very itchy.  Weird.  The itching is really bothering me.  He told me the benadryl should help and left.  I asked the nurse for a wet wash cloth.  She came back with one and I rubbed it all over my head.  “Does that help?” she asked.  Yes, I lied, and she left.

I tried to imagine the itching is getting better.  I definitely felt the flushing getting worse.  I lied down but nothing helped.  I felt extremely agitated.  A few minutes later, the nurse came back to check on me.  “Are you feeling better?” she asked, clearly expecting me to say yes.  I don’t know, I said.  My mind was not working very well.  “Are you afraid of the medication?”  she asked gently.  No!  I mean think of all the chemo.  I don’t know how to say it.  My head feels weird.  It is hot, it feels blocked.  I might, I might, I might….and then it dawned on me.  I might throw-up!  No sooner were the words out then I started gagging.  She dove for the plastic basin.  Luckily I hadn’t eaten much in the last few hours so the damage was minimal.  I have to go to the bathroom, I said with sudden urgency.  “No, stay here.  I am going to get the doctor.”

The
The “pain scale” doesn’t really apply to anaphylactic shock.

This time she returned quickly with two doctors, the ER doctor and the hematologist fellow on-call.  The three stared at me like an animal in the zoo.  “Do you have a lump in your throat?”  Yes!  I said.  Like I swallowed a vitamin and it got stuck.  And I am itchy.  And I feel stressed and I can’t think.  And nauseated and my stomach is cramping.  “Do you need some water?” the doctor asked, concerned.  I didn’t actually swallow anything.  There was some confusion while the nurse clarified that she had given the benadryl intravenously.  “Are you having trouble breathing?”  No, not that I can tell, I started to say but all of a sudden I started choking on I don’t know what.  The ER doctor sprung into action.  “Get another benadryl injection, get an epi, and STOP the antibiotic,” she firmly commanded glaring at the nurse.  She placed her plump arms on my legs gently and looked me in the eye, “You are having an allergic reaction.  We will give you benadryl and an epinephrine shot and steroids.”  I started to shake uncontrollably.  If BMT chemo is like this, I thought, I am going to have to be really strong.  I fought the urge to vomit on her.

But literally about 90 seconds after the nurse stopped the antibiotic pump, before the benadryl, before the “epi,” before the steroids, I started to feel a little better.  My mind cleared a bit.  I am feeling a little better, I exclaimed.  The nausea was suddenly gone.  I no longer had to pee.  Wow, I am feeling a lot better than about 1 minute ago.  I am still itchy, but I am feeling a lot better.  The nurse returned with the second benadryl dose and pumped it into my arm.  The doctors kept questioning me about the lump in my throat, and all I could say was I really want to lay down.  And so I did lay down and I felt another notch better.

In seven minutes they returned and asked about the lump in my throat again.  Yes it is still there. And then they noticed the red spots.  On my inside elbows, torso, face, neck and chest a rash was developing.  “Yes, definitely an allergic reaction,” they nodded with satisfaction.  Since the “lump” was still there according to my report, they decided to give me the “epi” shot, warning me several times the shot would make me feel horrible.  It was hard to imagine feeling worse.  Whatever is best, I agreed (I was not sure what to say).  But the “epi” shot, literally a shot of adrenaline,  was not that bad.  It was a shot in the arm and it made my arm a little sore and made me shiver like crazy, but I felt my neck cooling rapidly and suddenly it felt great to take big deep breaths.  Strangely as I lie on the bed chattering away, I felt a huge relief.   The “stress” and “confusion” evaporated.  I think I was having trouble breathing and I didn’t realize it. I just felt stressed!  I exclaimed.  The nurse arrived one more time with the steroids.  Then I drifted into a deep sleep despite my burning scalp.

What proceeded after *the allergic reaction* is another blur of blended memories, either from my exhaustion or the drugs or both.  At some point I had to get in a wheel chair and get a chest x-ray.  At some point we switched to a different ER room.  There were visits from doctors and nurses and I even ordered food, but I don’t really remember the details.  I know I didn’t see the sun or care.  Around noon on Tuesday, I kind of snapped out of it and started reading my book and paying attention, but I was completely happy to be in my quiet negative pressure ER room, safe in bed, reading my book and NOT in anaphylactic shock.  The itching was finally gone.  It was only then I completely convinced myself the itching had been real and not my own psychosis.  Wow!  That drug really worked me over.

Later that day they tried again with only one of the antibiotics.  I was nervous, but what could I say.  This time a much more experienced hematology nurse sat with me the whole time.  Apparently I had become a “one-on-one” patient.  To my relief, the doctors were right, I was okay.  The offending drug was Vancomycin, the one that was new to my system.  Vancomycin.  Vampire medicine.  Halloween.  I get it.

Dancing for the joy of it in my third story room.
Dancing for the joy of it in my third story room.

I am writing from the hospital 3rd floor.  A few days have passed and my fever never came back.  But I am not sorry to be here.  My unseen friend on the other side of the very thin door that separates our rooms is very quiet and well-behaved.  The view is fine and there internet wireless signal is decent.  Hospital life, no big deal.  But more importantly I am alive and I am feeling pretty good.

Even though the allergic reaction was independent of my leukemia and could happen to anyone, the experience cemented in my mind how quickly medical events can happen.  The on-call doctor was not joking when she said if you feel worse stop at an ER along the way.  Neutropenic leukemia patients can go from zero to 70 in minutes when a serious infection gets rolling.  As stated by no-nonsense Rico Suave himself, “You have Leukemia.  Leukemia is a very risky disease.  Everything is a risk.”  But I don’t think I internalized these words until now, after having this intense allergic experience.  I am glad I came into the hospital with my fever.  Who  knows – it could have been the start of something bad.  And there is no place better to be than the hospital when something bad starts to go down.

Whatever gets you through the night, its all right.  Right John Lennon?

Days Between

Yesterday, of all days, I decided it was time for my nine-year-old son to start doing chores.  For real.  Not I’ll-do-it-tomorrow or make-it-up-on-Sunday chores, but real helpful chores when help is needed.  Not that my husband and I hadn’t tried to enforce chores before.  We tried chore charts and task wheels and star incentives.  We tried choose-it-yourself chores and creative chores.  But as I watched my husband slave away yet again at the massive breakfast mess while my son whined about the $200 Halloween costume on-line we would not let him buy, something inside me tipped.  No more, I thought.  I love this boy to death, but he has to start helping for real.  Today.

Reef and Summer in front of their Halloween
Reef and Summer in front of their Halloween “work”

Right then and there I got out a green marker and made a very simple chore schedule.  “What about Cali?” he complained.  My heart ached.  Siblings innately know how to twist their parents into guilt traps of equalizing their children.  But my low hemoglobin made me strong.  Cali is six-years-old, I lectured.  Cali doesn’t read.  Cali is working on different things.  Today I am just talking about you.  This is only about you.  Or was it?

Well my son is smart and very capable and can be extremely helpful, but if there is one thing he hates its “work” when its not his idea.  He stormed into his room shouting “I am not doing dishes today!” and slammed the door.  In my superficially calm voice I said, Your choice.  If you don’t do your chores, than you can’t go do things with your friends today.  (Let’s face it, how can I really feel calm when my own child, born of my own body, screams at me.)  And that was that I hoped.  But I knew in my heart it was only the beginning of a very long day.

Summer and Faith
Summer and Faith “being friends”

For a while all was quiet.  I guiltily watched my husband scrub pots while I sat pathetically on the couch, wishing I could help but knowing I wasn’t up for the physical work.  I read to the babies, trying to distract Summer from tormenting her twin sister.  Summer kept waving Faith’s favorite stuffed monkey flauntingly in her face.  “I want my monkey!”  Faith cried as Summer pranced around the rug with the coveted primate.  “I’m going to my friend’s house!” Cali called, flying out the front door.  No you are not, I cried weakly but off she ran.  I chased after her.  It is too early!  Wasn’t it too early?  It felt way too early for all this chaos.

“I am going surfing this afternoon,”  Reef announced, finally emerging from his room when the dishes were safely finished.  You are not, my husband and I agreed.  “How can I earn it back? I am going surfing today.  I have to go surfing today.  I am ready now.  How can I help?”

His father was tempted, but I was a mean cold machine yesterday.  There was no “earning it back.”  I was sick of my son helping only when it was convenient.  He usually gets second and third chances with me, but not yesterday.  Today he is going to learn to help when I ask, I thought.  Maybe because it was time.  Maybe because my red blood was low.  Maybe because my white blood was low.  Maybe because my vision was particularly blurry yesterday.  Or maybe because I needed him to help yesterday.  Was this unfair?  Am I unfair?

His crying was unbearable, “I must go surfing or I will die!”  We had to get out of the house before everyone exploded so we went to West Cliff Drive to enjoy a community celebration.  What fun, the street was closed!  But I was not really having fun.  My head was pounding.  The sun was too hot.  I just wanted a place to sit down and everyone kept taking the next bench before I got there. How did we not bring food?  The babies were hungry.  “Snack! Snack!” they asked.  Me too, I told them.  My husband ran around trying to corral everyone.  Bicycles and skaters ripped around the open street with no particular organization.  Temporarily forgetting his morning misery, my son found a skateboard to borrow.  I watched one of his classmates pull him behind a bicycle with a tow rope as he waved cheerfully whizzing by.  My shoulders dropped and I let out a sigh.  I was so relieved to see my son happy.  He is still a kid, I thought; he can forget about me.

But back at home the dark clouds returned.  The babies, in tune with the amplified energies of all parties, didn’t nap and added their overtired urgency to the afternoon.  I told my husband to go take a break and get some exercise;  his eyes were flat, he was worried about me, but we both knew he needed a break.

No sooner was he gone than I found myself sitting on the couch with all four children shouting at me.  “You are the stupidest Mom ever, you don’t do anything for me!  I wish you would go back to the hospital!” condemned my eldest.  “I want my Monkey!”  “I want a cookie!” piped the babies. “I feel sick!” complained Cali.  I cowered in the corner, overwhemed.  Creative compassionate energies that usually bailed me out of this extreme kind of barrage were hard to summon.  My eyes were scratchy and watering and I was trying to remember when I had the last anti-nausea medicine.  Why did I think I didn’t need help today?  Why did I think I would be okay?

The girls!
The girls! (Faith, Cali, Summer)

I am finding there can be a great canyon between what I think I can do and the reality of what I actually can do.   The hardest times are proving to be the days between.   Not only is it hard for my family to judge what I will be capable of from day to day, it is even hard for me to judge.  What starts as an energetic morning can quickly crumble into a dizzying afternoon.  White blood cells can spring into existence after a week siesta, making my unbearable sore throat suddenly non-existant or a totally debilitating tooth ache a distant memory.  A sense of well-being is no longer a reliable feeling but a transient thought, subject to instant change. With my own uncertainties about how I physically feel, it is no wonder my family is frustrated and bewildered.  On there own levels they each have had moments of wishing I would just “go away,” which is understandable.  They need certainty.  They need solid ground. Even I have had moments of wanting  to run away from myself.

So today when I went for my blood check, I was both melancholy and relieved to find my white blood cells predictably had sunk below the critical threshold of 500.  I am neutropenic again and the rules are in place: no going outside without a HEPA-mask, only fully cooked foods, no handshaking, no hugs, no germs what-so-ever, no crowds, no schools, no other kids in the house.  I have come into the hibernation period where boundaries are more clear.  I must release my expectations of myself.  I may feel icky but there are less judgment calls.

After 10 hours of my son crying and shouting and hitting and fighting yesterday, I gave in just before dinner and drove him and his siblings down to the water to look at the waves with his sisters.  (At least the drive with everyone confined in seat belts was a temporary relief until my husband got home.)  Tension melted as I succumbed (a little) to my son’s needs.  Later, I asked my son to do his evening chore with me.  We’ll work together, I said.  He hopped to his feet and he worked right along side me.  He chatted about how we should reorganize the refridgerator and prided himself on how full he got the dishwasher.  He did not stop until every surface was wiped.  We talked about where he would have surfed if he was allowed.  “It wasn’t that good,” he pronounced.  “I’m kind of glad I didn’t go out.”  Maybe it was okay to stick to my principals yesterday.  Maybe he did need to help.  Maybe I wasn’t the only one who was unpredictable.

Halloween test-run
Halloween test-run

Although I can quit my work, stop making dinners, and stop doing laundry, the parenting goes on.  I wouldn’t want it any other way.  Imagine if my children did not view me as a parent any longer?  That would be true punishment.  Their love and anger are both proof I still exist where in other realms I am becoming increasingly invisible.  I may be unpredictable in what I can physically do, but when I stop to think about it aren’t we all?  Helping with the dishes was so hard for my son to do in the morning but became easy in the evening.  My twin two-year olds are able to share their dolls easily after breakfast, but sharing before is almost impossible.  As adults we try to smooth over our unpredictable nature, burying our discomforts and anger in our bodies, causing stress and other problems, but illness brings our true human variability to the forefront.

Nevertheless, I question my parenting choices more than ever.  I am doing what I can with my children, but is what I can do enough?  How can I separate what in my children’s behavior is a reaction to my illness, and what is just part of being a kid?  And how do I know what feels hard because I am sick and what is just hard because it is hard?  It is more difficult to distinguish than I would have thought.  In the end I suppose the answers to these questions don’t matter.  There is no choice but to move forward through this unexpected journey together.  This is the life our family was meant to live and we will live it completely as we go onwards and through.

Friends forever!
Friends forever!

Days Between

There were days
and there were days
and there were days between
Summer flies and August dies
the world grows dark and mean
Comes the shimmer of the moon
on black infested trees
the singing man is at his song
the holy on their knees
The reckless are out wrecking
The timid plead their pleas
No one knows much more of this
than anyone can see anyone can see
There were days
and there were days
and there were days besides
when phantom ships with phantom sails
set to sea on phantom tides
Comes the lightning of the sun
on bright unfocused eyes
the blue of yet another day
a springtime wet with sighs
a hopeful candle lingers
in the land of lullabies
where headless horsemen vanish
with wild and lonely cries lonely cries
There were days
and there were days
and there were days I know
when all we ever wanted
was to learn and love and grow
Once we grew into our shoes
we told them where to go
Walked halfway around the world
on promise of the glow
Stood upon a mountain top
Walked barefoot in the snow
Gave the best we had to give
How much we’ll never know we’ll never know
There were days
and there were days
and there were days between
polished like a golden bowl
The finest ever seen
Hearts of Summer held in trust
still tender, young and green
left on shelves collecting dust
not knowing what they mean
Valentines of flesh and blood
as soft as velveteen
hoping love would not forsake
the days that lie between lie between

-Jerry Garcia and Robert Hunter

Soul Searching

Climbing the stairs to the ITA
Climbing the stairs to the ITA

It is 7 am, but the Stanford Cancer Center is already bustling on this clear fall Monday morning.  The glossy floors squeak with the shuffle of passing feet.  The air is filtered and cold and I make my customary stop at the bathroom to dawn my extra layer – tights, ski hat, extra sweater.  Next I head to the Children’s Hospital coffee stand across the courtyard to order a Starbuck’s hot chocolate and a couple of bran muffins.  On the way back I survey the progress at “The Great Construction Project” and note the still shining silver half moon while I sip my hot beverage.  Life with high blood counts is good.

At 7:25 am as I climb the grand steps to the ITA to start my first day of out-patient chemo (a truly all day event), it is strangely reminiscent of my  pre-kid office days in San Francisco.  I worked in a classy building at the foot of Market Street adjacent to the newly remodeled ferry-building turned high-end food court, where the address was always spelled with letters instead of numbers, One Market Street, Floor Four.  Every morning around 7:30 am, after a deliciously long muni-train ride during which I usually immersed myself in Marion Zimmer Bradley’s fantastical world of Avalon or some equally absorbing novel, I would enter the revolving doors dressed in my best attempt at city slicking, purchase my hot drink and muffin, and climb four sets of stairs to my hip engineering office with ductwork and structural steel exposed for style.  Once settled in my cubicle, I would wrap my scarf and crank the foot heater to battle the highly effective air-cooling system while I ran computerized structural analyses and virtual collapses of theoretical buildings for hours.  At noon on the button I would dash over to the swim club and dive into the aqua pool for a lunchtime workout and rinse off in the exhilarating outdoor shower with the San Francisco foggy wind blowing the shower curtain wildly.   I returned to my desk by 1:15 pm to continue the work day, and finished with the long muni-ride return trip, delivering me to my outer Sunset flat around 6:30 pm.

Me enjoying the Stanford cactus garden on my chemo lunch break
Me enjoying the Stanford cactus garden on my chemo lunch break

It has been a long time since I arrived at an office early in the morning with the freedom to buy coffee and sit for hours, but here I am again.  Who would of guessed?  My work is to write blogs, catch up on social communications, day dream, philosophize.  And I don’t even have a boss, just a handful of rules.  While there is no pool, I spend my 5-hour lunch break cruising the local mall, discovering art museums, or relaxing in the nearby arboretum.  At 5 pm, I return to the ITA to kick my feet up for my evening dose of chemo, and head home at 9 pm.

Everywhere I look ITA patients have brought their personal resources for getting through the day.  A man in the waiting room dozes with oversized headphones and cozy fur-lined slippers.  Another man brought an entire padded cooler of snacks and lunch supplies.  A woman who looks a lot like me (same hair style) is dressed pleasantly in a purple sweater with matching purple clogs and is eating edamame out of bag while she reads a novel.  I myself have a giant backpack filled mostly with clothes to keep me warm and make me feel good – my favorite hats and scarves, a new jeans jacket, my trusty one-armed fleece shawl – and then my writing and reading utensils: pens, notebooks, a novel, my computer.  We all find our ways to dig deep and courageously move forward;  there is no singularly right way.

But my favorite is Mr. Leukemia-won’t-get-me-down sitting directly across from me in the lounge.  Small and lean but strong, he wears black leather shoes, black socks, black dress pants, and a freshly pressed black T-shirt (tucked in of course), a black multi-function digital watch, and a black ironman hat partially concealing his bald head.  I listen inconspicuously as he tells three consecutive nursing staff how he survived his recent hospital stay.  Each time a new person arrives, he rises to shake their hand or even hug them with a polite greeting.  I wasn’t going to succumb to the pajama bedroom-slipper lifestyle, he recounts.  Everyday I took a shower and dressed in nice clothes, motioning to his outfit.  Then I exercised for an hour, whether I was confined to my room or walking the halls.  The nurses were very accommodating.  I would eat a good diet – eggs, lean meats, and lots and lots of vegetables.  And then I would work (pointing to his computer).  I have to keep working.  If I had a conference call at 7 am with Europe, they would delay my chemo to match my schedule.  No transfusions, no antibiotics.  Truly a type-A ironman, I think.  Charging life is what feeds his soul.

A few days prior, I was listening to the public radio station while driving home from Sunday night’s pre-chemo labs.  Over the airwaves came the voice of a man named Parker Palmer.  A calm older man with a professor-like gift for lecture, he was speaking about the division of human living into compartments, especially in the realms of school and workplace and medicine.   He was advocating what he called the return to an undivided being.  He argued a doctor is a more effective healer if she brings into her power her capacity for intellect, emotion, and soulful presence in addition to the will to fight disease.  A teacher has the best chance at engaging his students’ minds if he uses not only intellectual stimulation but appeals to the emotion and ego of his students.

Then Mr. Parker went on to define different aspects of the human being: the intellect (what academic pursuits traditionally call forth), emotion (what therapy calls forth), the will (how we get things done), our ego (our self-esteem based on our success in all of the above).  However, deep under all these layers, he claimed we have a soul.  The soul, he said, is what is left when all these other layers are stripped away.  The soul, he claims, can be a nebulous thing for Americans to grasp; we don’t traditionally have the language or social customs to address soul.

My four beautiful kids, plus an extra one peeking!
My four beautiful kids, plus an extra one peeking!

His words immediately hit me.  I have had passing moments in the last months when I looked in the mirror at the hospital and thought – who am I?  My work has been taken away, my family and friends removed, control over my body and hair gone, my energy to get things done decreased, physical and sometimes emotional pain reduced by drugs, many decisions taken away.  And yet still, I know I am me.  There is a me that exists very fundamentally, very solid, independent of all these external layers.  This, I think, must be my soul.

Mitchel's cove where I try to walk daily has been bursting with whales, dolphins, otters, and fish because of the warm El Nino waters.
Mitchel’s cove where I try to walk daily has been bursting with whales, dolphins, otters, and fish because of the warm El Nino waters.

In my days of relative wellness between chemo treatments, I have found myself seeking the activities that feed my soul.  Walks along West Cliff taking in the peaceful ocean horizon; enjoying art in my own home that takes me to special places and times in my life; socializing with friends and family; quality time with my children, including lots of hugs and cuddling and eye contact, listening, story-reading, and playing games; yoga and meditation.

As I make time for the activities that feed and expose my soul like looking people in the eye, ditching the fake smiles and giving only real smiles, writing this blog, I find myself a magnet for the soul searching of others.  I can’t tell you how many people – strangers, relatives, and old friends alike -have reached out to me in all kinds of ways to share their own stories and soul searching moments.  As if my own liberation has given them permission to delve into their own lives, and I am fascinated, honored, but also bewildered to be the recipient of their stories.  I am awed and amazed at the domino effect of soul searching.

Scott's creek
Scott’s creek
Mike and I play hooky and hike to our favorite spots on Santa Cruz north coast
Mike and I play hooky and hike to our favorite spots on Santa Cruz north coast

I reflect on my life before Leukemia and wonder how it was so hard to squeeze in soul feeding activities.  Even a short lunch break on West Cliff seemed too extravagant.  Every minute was accounted for.  Any break had to be vigorous exercise to make sure I was staying in shape.  Time with my children was almost always interrupted by a multitude of household tasks I could not let go – laundry, grocery shopping, meal prep, or sweeping the floor – leaving never enough time for play and hugs and focused listening.

Faith can't wait for her first teeth cleaning.
Faith can’t wait for her first teeth cleaning.
Summer takes a little more coaxing to open her mouth.
Summer takes a little more coaxing to open her mouth.

Yet I do know how there can be no extra time.  Four children must be fed, must have (relatively) clean clothes, must be (sometimes) bathed. The house must be functional; things can go downhill really fast.  Children demand you fall into the present.  Is it possible to carry the peace of a solitary oceanside stroll back into a bustling household?  How long can it last before the peace is swept away in the everyday very real needs of the family.  Summer has an “owie.”  Cali can’t find her pajamas.  Reef needs to order the band online tutorial.  Faith just wants Mommy.  Not to mention the trash can is overflowing, nobody flushed the upstairs toilet since this morning, and beads are dangerously spilled all over the floor.  Is it possible to float above the chaos?  To deal with things as they present themselves one by one without becoming overwhelmed?  To love and listen to one another without embodying the stress of others?

I can only answer yes.  Though there may not be a clear path, it is a goal worth pursuing, perhaps literally the key to life.  An intention to which I must return again and again.

Soulshine,
It’s better than sunshine,
It’s better than moonshine,
Damn sure better than rain.
Hey now people don’t mind,
We all get this way sometime,
Got to let your soul shine, shine till the break of day.

– Warren Haynes