Now you know! By CALI

el-camin-art-2
Heart Art in the Hallway

I like to go to the hospital called El Camino.  There is a playroom.  Inside the playroom, there are lots of pens and lots of toys.  My favorite game is Yahtzee because I can roll the dice, and it is almost like math.  There is also an art room.  There are lots of art supplies.  But the food is yucky.  If you ever have to go to the hospital, now you know!

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“Muppets in Russia” Christmas play murals that patients helped make.
art-room
Art Room Art
playroom-1
Playing in the playroom.
el-camino-library
Getting books in the library.
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More art in the hallway.

On Pain and Other Inconveniences

I remember a handful of distinct moments in my life when I wished I could temporarily sever my head from my body.  The first incident happened when I was about twenty-four on an adventure with Mike in Western Samoa.  Blood drainage and swelling from a golf-ball induced cheek-bone injury lead to a raging ear infection.  As the humidity approached 100%, I remember shivering in the back of a third world jalopy with a blanket over my head in feverish delirium, wondering if I could some how detach from my head and rejoin later.

Another time I was flying in an airplane home from Hawaii with an infant in my arms and a toddler by my side, when suddenly lightening shot up my nose and into my forehead.  I couldn’t think; I could barely breath.  It took 48 hours and bunch of steroids for my peculiar sinuses to equilibrate (I was suffering from a serious case of aerosinusitus).  As I tried to sleep sitting up, the only tolerable position for my head, it crossed my mind that I would like to remove my head until the problem cleared.

Most recently, I found myself face down in the Stanford Cancer Center day-hospital bed, as a nurse practitioner (NP) probed the back of my hip bone with a biopsy needle.  This is my seventh bone biopsy, so you would think I would have my coping mechanism for this particular procedure conquered.  Not necessarily.  “You don’t need pre-meds, right?”  asked the medical assistant casually when I first arrived.  I followed her lead, Of course not, I’m fine.

But later, I questioned my decision.  Why do I always say no to extra meds?  Partly it’s the timing.  The nurses always ask right at the beginning of my appointment, right when I walk off the street into the quiet room.  The procedure seems a world away. Its no big deal right?  If the nurses asked me again when I was on my belly, shirt up, skin cleaned, ready to drill, the reality of the situation would be more present.  Would I like to be knocked out and not know they were drilling a whole in my hip?  Sure!  Do I need to be completely aware of all the details of the procedure.  No way.  Some of my refusal of extra pain meds is not wanting to disappoint the nurse.  She is expecting me to not need pain medications, and I have a reputation to uphold.  But some of it is logistics.  I chose to drive myself here, I already committed, and at this point, not being able to drive home would be a major inconvenience for me and my family.  Finally, some of my resistance is fear, a ridiculous fear that the extra sedatives won’t work, a ridiculous fear that there will be no last-resort alternative if the procedure is suddenly unbearable.  Alas, I chose to tough it out.

So there I was, undergoing local anesthesia, a pinch and a burn as the numbing agent filtrated my lower left sacrum.  “Do you feel anything here?” asked the relaxed NP, knocking on my bone with a needle.  A bit, I said, my fists clenched.  I took a deep breath; I tried to relax the muscles along my spine, my neck, my shoulders.  She injected more lidocaine. “What about now?” she asked a few moments later, poking around under my skin. I guess it’s okay, I forced myself to say.

How was it really okay when you knew she was about to drill a hole in your hip bone? How was it okay when you knew at any moment she might hit a wayward nerve would radiate electric shock up my spine and deep into my hip joint?  The shock would be momentary, totally bearable by any measurable scale, but the uncertainty was what made me crazy.  Not knowing when a nerve would be activated was completely unnerving (no pun intended).

The NP turned to assemble her tools, and it dawned on me, I could run.  The door was not closed.  I was not strapped to the table.  While she was turned, I could just leave.  I was sure they would not chase me.  I was sure they would insist on pre-meds if I came back to try again another day.  I dared myself to sprint away.  But somehow I stayed face down, quiet, waiting.

I closed my eyes and tried to imagine detaching my head from my body.  I tried to visualize my head and consciousness floating on the ceiling, watching the procedure from above.  I tried to imagine I could float above any sensations in my body, unaffected, unattached.  But this was actually impossible.  My mind and body are one.  As much as I told myself I was mentally detached, my focus was drawn back to the pressure on my back.

The biopsy was not so smooth.  The NP had to drill two different holes because the first sample was not sufficient.  She hit several nerves, causing my legs to jump off the table like pop-corn each time.  I moaned and whimpered under my breath.  I tried to relax the muscles in my hands, but moments later they were balled fists again.

“Are you okay?”  she asked with genuine concern.  “Is it just a reflex?”  Yes, I lied.  I mean I think I lied.  It was not a pain to which I could give a number, just a pressure and then an electric shock that felt dangerous and, yes, owie.  She asked a bunch more questions-  here?  there? faster? slower? – and finally I said, with questionable conviction, Maybe just get it done.  So she pushed harder and faster.  “Can I go a little more?” she asked.  Yes, I said meaning no.  She pushed more, I said, No!  “Okay, that will do,” she said.  Will it?  I wondered.  Was sample length a grey issue?  See what you can get out of the patient?  Will I be less likely or more likely to see cancer if she gets a longer sample?  I felt like sample length should be a black-and-white kind of thing.

Everyone finally left, and I sat partially reclined in the bed decompressing, nauseated, traumatized.  Ten minutes later, my nurse returned and briefly examined the bandage.  “Looks great!” she exclaimed cheerfully.  “You are free to go.”  Do you mind if I sit here a little longer?  I asked, not ready to face the world quite yet.  “No problem, take your time,” she replied, and she whisked out.

Here’s the thing.  No matter how hard I try, I cannot uncouple my body from my mind.  In the moment of pain, my mind clings to each sensation and amplifies the effect.  In the moment of recovery, my body is already healing, but my mind continues to suffer long after.

A week later I got the (mostly) good news.  I should have been ecstatic; my bone marrow was (for the most part) completely clear of cancerous cells. But that “mostly” was like a splinter in my finger.  I reread the report:

COMMENT: The aspirate smear do not show an increase in blasts, but rare megakaryocytes show some significant dyspoietic changes. The
clinical significance of this. finding is uncertain, but may
represent early residual disease or a response to medications.
Clinical correlation and correlation with concurrent cytogenetics
and minimal residual disease studies is suggested.

While stuck in a clinic room waiting for Cali’s blood results the next day, I managed to squeeze a call in to my doctor, who assured me many of her patients have similar minor abnormalities in their reports with no consequences, and I should not be worried.  But the truth is, we really don’t know for sure.  Even with perfect test results, we never know for sure.  It reminds me of that famous quantum physics principle, “The more we know what it is, the less we know where.  And the more we know where, the less we know what it is.”  Look too closely, and you won’t know what you’re looking at.

Cali’s blood finally came back.  Her counts were too low for chemotherapy, so her doctors told us we would check again on Monday.  What happens if her counts are still too low on Monday? I ventured.  “Then we will check on Thursday for Friday admit.”  Christmas?  I whispered, looking to see if Cali was listening.  Beneath Cali’s big round glasses, I saw tears welling in her eyes.  “The timing is very important,” the attending confirmed firmly.  But what about the mind?  What about the spirit?  I wanted to scream, but I didn’t.

So here we are, less than a week from Christmas, and we know exactly what her blood counts are, but we have no idea where we will be for Christmas.  And I can try and think of refugees in war and families with mental illness and extreme poverty and all the atrocities of life.  I am thankful for my excellent health (even with the splinter) and Cali’s strengthening progress.  But my mind cannot override by bodily need of wanting to know where I will be on Christmas Day.

 

**NEWS FLASH**  As of today, Wednesday, December 21, 2017, Cali’s white blood counts are STILL too low to continue chemotherapy, and the doctors have finally agreed to post-pone chemo until after Christmas.  Hurrah!  Hurrah!  We will all be together through Christmas Day!

 

 

Patience

Well it turns out 3 am on Thursday morning (very EARLY Thursday morning) is a great time to go the ER. Assuming one can get past the waking up at midnight, one, two three and then driving over twisty highway 17 in the rainy dark, there are definite advantages.  For one thing, the traffic is extremely light.  The only car we saw for the first forty-five minutes was an SUV highway patrol who trailed me for about four miles before it must have decided I was just a paranoid Mom with little night vision issue.

Additionally, the late hour really shakes down the waiting room crowd.  The only people remaining at 3 am are either really sick or really crazy.  I guess we must have looked the latter because the security guard at the Emergency entrance gave our backpacks the full-strength search, removing every item and checking every pocket.  I don’t know, maybe it was my tie-died socks.  Luckily, the oncologist on-call had called ahead (how’s that for a phrase), and we were whisked immediately away into our favorite pediatric negative pressure ice locker.  This promptness afforded us only limited exposure to the bearded man in the corner with a felt hat howling like a wolf and the gentleman vomiting copiously into his ball cap.

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Getting’ blood again

3 am must also be right after coffee break, because the medical professionals were in hyper-caffenated super-mode. The attending was in our room and the nurse accessing Cali’s port  before I even had a chance to relieve myself in the ladies room and hang my wet raincoat on a chair.  When they left, Cali and I briefly tried to nap together in the railed hospital bed, but we were quickly awakened for a urine test, chest x-ray, and blood cultures.  Within one short hour of our arrival, we were tested, diagnosed, and being prepped for treatment.  Cali’s red blood level was dangerously low, and a blood transfusion was eminent.  Thankfully we are expected to return home by dinner tonight.  This is an amazing improvement over my pervious 48-hour ER sagas.  I am going to plan my ER visits for 3 am every time.

While I watch Cali sleep here in the ER, I have been assembling a list of desirable skills for people who aspire to my dual  career as a heme-onc patient and heme-onc parent-caregiver.  (Not that I possess even half of these venerable qualities…)

  1.  Ability to awake cheerfully (multiple times) in the middle of night to clean up vomit, change sheets, clothing and diapers, or trouble-shoot beeping pumps.
  2. Ability to selectively sleep through unimportant alarms, hospital door action, bright lights, blinking computer screams, crying or vomiting on the other side of the wall, and flashing TV programs, while easily arousing to your own child’s vomiting sounds, important electronic beeps, and critical phone calls.
  3. An affinity for laundry, especially soiled bedclothes.
  4. A love (or at least tolerance) for driving long hours while listening to kid music.
  5. Strong biceps for loading and unloading wheelchairs.
  6. Detail oriented accounting skills for remembering and recording overlapping medication schedules, appointments, and pharmacy refills. (A background in spreadsheets is extremely helpful.)
  7. Extreme ability to live in the present with no attachment to future plans.  All plans (inducing your working hours and vacation days) are subject to change at any moment without any warning, justification, or input from you.
  8. Ability to work without pay.
  9. Ability to easily abandon any other children or responsibilities at any moment without warning.
  10. Ability to read your child’s mind and assess pain without actually exchanging recognizable communication.
  11. An impeccable memory for facts including all family birthdates, emergency instructions and phone numbers, doctor’s names and spellings, your permanent and temporary addresses, insurance information, chronological medical histories with dates, chemo schedules, drug names with dosages and pertinent side effects, and a multitude of other minutia that will be thrown at you all hours of the day and night.   (Exception: In rare cases memory may be replaced by excellent note-taking skills.)
  12. An appetite for hospital food.
  13. Enjoyment of seeing the same movies over and over and over.
  14. Flexibility to bath and sleep in a variety of accommodation styles (sitting shower, bath, private, shared, chairs, couches, trundles, hospital beds).
  15. An ability to appear amiable and compliant with all encountered personalities, while subtly manipulating those around you to expedite and streamline your services, timeline, and schedules.
  16. PATIENCE.  Lots and lots of patience.

Being a practicing engineer by trade, numbers 6, 8 and 15 have come quite naturally to me.  Numbers 1, 3, 7, 9 and 12 have been particularly challenging.  To combat chemo-brain, I fortunately have been able to apply the exception to number 11.  (I know.  It’s weird when I have to put the social worker on hold while I look in my trusty purse-sized notebook to recite my own daughter’s birthday, but, hey, whatever works, right?  No one asked  if I wanted this job…)  And with practice, I am managing to develop 2, 4, 10, 13, 14, and 16.

In honor of number 16, this one goes out to the class of ’94: