Morphine and Triple Mix

I am not one for drugs, over-the-counter, prescription, legal, illegal or otherwise.  However, after last week’s chemical on-slaught, I figured my track-record was so far gone that when the doctor asked me if I wanted to try something to “take the edge off” during Monday’s bone biopsy, I said why not?

As far as I see it, there are two groups of drugs in the hospital.  There are the Mike and memandatory drugs – chemo, birth control, laxatives or anti-nausea under certain conditions, antibiotics, and other mysterious drugs with important internal functions.  And then there are the optional hospital drugs.  OHD.  Beware of the OHD.  Questionable outcomes with even more questionable side-effects.  Even the doctors cannot quite be sure how they will affect any one person.

My first foray into OHD was a morphine related cocktail designed for eliminating anxiety and pain, recommended by the trustworthy fellow, Dr. X, who has been seeing me every day since I started, and who was going to be performing the bone biopsy procedure.   From the outside it looked fairly innocuous – a small quantity of clear liquid they would inject into my arm port.

Just as the nurse was getting ready to hit go, Dr. X asked, “Have you ever had any kind of morphine before?” No, I said.  “Nothing?” he asked incredulously.  No.  Dr. X raised his eyebrows a little, looked over at the  handsome doctor-in-training from Florida and said, “Well you might feel a bit of a head rush.”  Okay, whatever.  I eased into a reclined position and waited.

Well, let me tell you when morphine is injected strait into your blood stream all at once it hits you pretty fast, like instantly.  I sat up like spark, totally erect.  I would like to have seen a picture of my face.  I think my jaw dropped open and I know I sucked in a huge gasp of air.  It felt like someone was strangling my neck with warm blood and pushing it into my brain.  Pleasant wasn’t the word.  More like scary.  I know there was fear in my face because it was reflected in everyone else’s faces.  Everyone was waiting to see what I would do next.

To their relief I said, “That was a surprising.”  Just as fast as the morphine bomb hit, its warmth began to diffuse throughout my body.  Everyone let out a sigh and said they would be back in a few minutes to start.  I lay on my belly and listened to the relaxing nature soundtrack on the hospital TV, feeling like a hot blob of jello on a sandy beach.

The procedure was explained to the doctor-in-training in extreme detail, so even though they were operating on my back, I knew exactly what was going on.  I suppose the cocktail did “take-the-edge-off” because my hands only went a little rigid when he explained how he was digging-in and grinding-off and drilling-through and what not.   (Not usually one’s favorite verbs when one is talking about one’s own hip bone.)  And I didn’t have too much anxiety when he began to wiggle and press on my back in the same motion you would use with a stubborn screwdriver for several minutes at a time.  In the end they produced a very clean sample they shared with me, a cylinder of bone floating in preservative.  Fascinating.

After the procedure, I had to lay flat on my back for a half hour to prevent bleeding.  Listening to the waves over the TV intercom, I fell promptly into a deep, black sleep.  More than two hours later, I awoke sober and dazed.  How did I sleep until dinner time?

My next experiment was with Triple Mix.  You would think I would have learned with my first cocktail, but my throat was hurting so badly I could barely swallow, and eating dinner was a true chore.  “Some people like the Triple Mix,” the nurses kept telling me when I complained. “They drink it before they eat to ease the pain.”  Like happy-hour, I thought.  It never occurred to me most nurses have never tried Triple Mix.  I now think trying Triple Mix just once should be a prerequisite for all hemo-chemo nurses.

I properly swished and slurped the purplish yogurt-like drink.  Smelling and tasting like the dentist, I immediately knew this was a mistake.  My mouth, tongue and lips were instantly completely, mouth blubberingly numb. Lidocaine.  I knew I heard that word before.  Dentists use it to numb you for drilling cavities.  I waited and waited and waited for the numbness to reach my soar throat.  It never did.

Great.  I just ordered a good dinner – spaghetti with shrimp and alfredo sauce.  I won’t even be able to taste it a bit and I will be drooling out the sides of my mouth, but it will still hurt like nobody’s business to swallow.  What a joke.  A good happy hour drink my foot!  I’d like to talk to the patient who likes Triple Mix before dinner.  And the nurses say it will last four hours.  FOUR HOURS!!  Somebody press the undo button.

For once I was not mad at the kitchen for being late.  Dinner took more than an hour to arrive, and the nurses were wrong.  Triple Mix, thank Ja Almighty, only lasts about 45 minutes.

This afternoon, out of the blue, my nurse came in with Triple Mix right before lunch.  I shook my head with a grim look on my face.  I don’t do Triple Mix.  One look at my face and he took it right back.  He knew I wasn’t messing around.

Now you would think I would have stopped there.  (Please feel free to skip to the end if you are bored already, but I must continue.  It is so satisfying to tell the whole story.)  You must understand this sore throat thing is really bad.  One tonsil in particular is very painful.  It hurts so much to swallow, I often close my eyes to absorb the pain.  Trying to move my tongue to the lower left corner of my mouth almost makes me faint.  Eating is a really a trial.

So when the doctors rounded-up this morning, I asked them isn’t there anything you can do to help me here?  I tried the lozenges, the Triple Mix (I still tremble at the name), salt water rinses, tylenol;  nothing helps.  The kind authoritative attending said “Try the oxycodone.”  It turns out the doctors are the biggest OHD pushers of them all.  “I’ve asked,” I say, “but I don’t think the nurses know it is for my throat.”  Oh, she says with her German firmness, I’ll make sure they know.

When my nurse walks in I bravely ask for for the oxyC.  (I am aware this can be a pretty powerful drug.)  He hesitates a little, and then asks “How much do you take?”  I say I don’t know.  I’ve never had it before.  He laughs.  Okay then, we don’t want to knock you off your feet.  He comes back with a little cup of clear red juice, looking and tasting like cranberry juice.  Its not to long before I have the feeling of falling forward.  Little pains from the biopsy and other pains I didn’t even realize I had fall away.  It feels much more easy to do yoga and move about the room.  But do you think that darn oxyC does anything for my throat?  Not really.  It takes swallowing down from an 8 to about a 7, and it is still really painful to eat.  I give up, but enjoy a floaty few hours.

I am a strong believer in whatever works for you, no judgements.  But I have developed my own list of remedies that work for me:

stomach cramps – warm compresses on the abdoman

anxiety – music and relaxation techniques

intense soar throat – continuously sucking and chewing on crushed ice; eating cold chocolate pudding, premium frozen juice cups, and thick cold yogurt smoothies (all conveniently available at no charge through room service); dining on soups and other liquid foods

cancer – chemo drugs

Yes, chemo drugs.  Because today I found out the results from Monday’s bone biopsy.  The chemo drugs worked for me!  All bone marrow cells are dead, good and bad.  This is very good news.  It is not yet considered complete remission – CR will happen if the cancer cells don’t grow back in two weeks.  But this success is the first step.  These results are cause for real celebration.  Who cares about some old sore throat.  Raise your glasses tonight and have a smoothie on me!

Natural remedies (from left to right) chocolate pudding, ice fruit, ice, ice water
Natural remedies (from left to right) chocolate pudding, ice fruit, ice, ice water

Saturday Night Fever!

The wonderful news is the stomach cramping has subsided, and I am back to my normal appetite and eating patterns, no longer sleeping with hot packs on my belly all night.  (Belly hot packs are quite cozy, however; you may want to try them sometime.)

Me playing my guitar with Bill and Krissy.
Me playing my guitar with Bill and Krissy.

My sister and her boyfriend came to visit bearing guitars, and we passed some beautiful time together playing and singing and analyzing duck behavior.  However, even before they arrived, I was feeling a growing sense of unwellness.  Achiness, fatigue, dizziness, headache.  Sort of like getting the flu, but more like a really bad hangover that just keeps getting worse.

Later I took a shower and when I got out, I was shaking.  I quickly got in my PJ’s and under my blankets.  Not surprisingly, when the nurse took my temperature and I had a low grade fever.  (I take her word for it because I just can’t get used to the Celsius thing.)  “It is not really a question of if you’ll get a fever, but when,”  she said.  To her credit she was the sweetest most apologetic nurse ever, but she would necessarily need to check my temp every couple of hours during the night.  I agreed.

So at 11pm when she came in, and I wasn’t really sleeping because my head was throbbing on the pillow no  matter which way I turned, my fever had spiked.  My throat had pins in it and a gland on my neck was a hard sore ball.  A dry little cough erupted.  “I’m sorry,” she whispered in the dark, “but we will have to do a full work-up.”  Hmm… work-up?  Like work-out?  “Now?” I asked.  “I’m sorry, but yes,” she peeped.

While I appreciated her respectful start, it was soon lost on the brash and loud resident on call who bust into the room 20 minutes later and turned on ALL the lights.  He looked at my throat, felt my neck, and decided there was nothing serious to worry about but we still needed the full work-up (work-out).  Here we go, I thought. SATURDAY NIGHT FEVER!!  If only I had known I would have worn my disco jammies. (paste into your browser)

(See the bandage on John Travolta’s face at the end?  I think he had blood drawn too.)

What a party!  At 1 am in came the giant portable x-ray machine, looking strangely dinosaur-like in the shadows.  In came the phlebotomist.  (Isn’t that a great word – also prehistoric sounding.  It means someone who specializes in drawing your blood.  Otherwise know as a vampire.)  In came the urine specialist.  (Wow!)  And the necessary others who show up for exciting events.

The giant dinasour x-ray machine reached its long neck up over my bed and took an x-ray of my chest without me having to leave my bed.  Talk about bedside service!  Out went the dinosaur, and in came the vampire.  She had to poke me in two different places in addition to taking blood from my PIC line, and let’s just say grace was not her strong point.  I watched with sadness as more blood flowed out of my already depleted veins.  Then the pee-test.  I declined the offer of a bedside commode, happy to make the short journey to avoid any more messes in my bed.  Finally, my nurse, looking more exhausted then any of us, informed me she would have to change the dressing on my PIC line, a somewhat painful 30 minute process.  Right now?  What a silly question.  It’s Saturday night!

Around 3:30 am, the party ended.  The guests left.  Anti-biotic was hung on my IV drip.  My nurse promised to let me sleep until 6:30 am before morning blood draw.  She even blessed me with tylenol to break the fever and the relieve the headache.

But do you think I could sleep?  No-Way Jose!  From 3-6:30 am I was hot, hot, hot.  I kicked all the covers off but was still drenched in sweat. The ticking of the new IV-antibiotic was driving me nuts!!  I tried wrapping the IV-pump in the blanket I no longer needed, but the ticking was at such a frequency it penetrated all attempts at muffling.  I tried ear plugs but that tick busted right through those too.  The tick had a miraculous way of getting louder about every thirty seconds.   Just long enough to let you start to drift into sleep, only to wake you up again moments later.  At 6:30 am, they drew blood again, and only then did I finally fall asleep.

My hangover from our Saturday Night Fever party was the worst I have ever had.  Doctors did their rounds, I ate breakfast, all without getting out of bed.  My head throbbed, my vision spun, I just wanted to hide under the covers.  “All within the realm of what is expected,”  they said.  After more tylenol I emerged out of bed a 1 pm, only to go back for a nap at 2 pm.  It was just that kind of day.

Today has been a fever-free day.  Hopefully the anti-biotics are working.  I am learning to ignore the ticking of the pump.  The IV-pole and I are getting tight again.  This afternoon, I went out for a walk and I took my IV-pole.  I walked around slowly feeling dizzy and weak, leaning on my pole.  When I came back and was washing my hands in the ante-room, I remembered I wasn’t even connected to my pole.  The nurse had left it disconnected so I could walk around a bit.  Silly me.

The Strength of Time

The hospital can be a timeless place.  With food available all day long, nurses in and out of my room 24-7, bright lights at all hours, it can be easy to lose track of the rhythm of the days.

I find myself clinging to things that anchor time.  I love the large clock in my room ticking without stop, hands circling around, an always visible testament to the passage of time.  I enjoy the blood count calendar the nurses hung in my room in clear view of the bed.  Each day the nurses chart the date, the number of days since we started chemo, and my blood count levels.  In a glance I can see the whole hospital stay and understand where we are in the midst of the blood count journey down and back up again.  I also enjoy the wall calendar I have from home, still marked with all the kids’ camps, appointments, and birthday parties.  It is a connection to the world I left so abruptly, and to which I will hopefully return in a few weeks.

Duck on A Mission
Duckling on A Mission

When I go outside there are other indicators of the passage of time.  In the majestic fountain in the front of the hospital where I sometimes venture, their are three ducklings.  When I arrived two weeks ago, they were the size of my hand and now the ducklings are twice as big and feeling their oats.  They swim bravely all the way across the pond and then dart back closer to their mother, testing the boundaries of their freedom.

The Great Steel Project
The Great Steel Project

One of my favorite things to watch outside is the progress of a massive steel construction project.  Clanging and banging, welding and giant cranes, it dominates the immediate skyline outside the hospital.  Bit by bit, the new hospital is being erected, standing proof that big accomplishments sometimes take a long time to realize.  I like to study the bracing configuration and framing layout.  I have so much to learn about steel construction!  For one, I am baffled by the lack of bracing at the bottom floors.  After a little online research I discover the building is base isolated!  How cool!  The massive structure is resting on giant underground rollers, allowing the building to roll around in an earthquake and suffer very limited damage, truly state-of-the-art engineering.

However, the single most important thing keeping me going, especially on days like today when my hemoglobin is only 7.2 and my energy is at a rock-bottom low, is my own daily routine.  After all, I am an engineer, and I like a certain order to things.  Here is the rough order of events:

Wake-up and sit-up – Sometimes this takes a really long time.

Order breakfast on the telephone – It takes 45 minutes for breakfast to arrive so it is good to get a early jump on this one.

Morning yoga – Highly modified, sometimes this simply involves laying on my back and thinking about yoga.  However, as my sister reminded me, the first step of yoga is intention; sometimes I only get to the first step.

Washing – It always feels good to wash my face and change my clothes and rinse my mouth with salt water.  Sometimes I even get to take shower!

Eat Breakfast – I try to eat with some peaceful music.

Round-Up with the Doctors – In the mid-morning, the doctors start making their rounds.  A line of determined looking folk march into my room and surround my bed.  They all stare at me, for I am the object of interest.  I am finally getting the vocabulary down.  The small army is led by the attending, this week a brilliant german woman with kind eyes and a gentle voice.  Next in line is the fellow, a young man who does all the talking, followed by a resident (or two), bearing stethoscopes.  The residents do all the physical examining, which usually involves listening to my heart, lungs, looking in my mouth with a flashlight, squeezing my ankles, checking my “PIC” line and poking at my stomach to see if it hurts.  Well, yes it hurts when you poke it!  Then there are any number of others, usually a slew of 2-5 young women lining the back of the room, who are never introduced and sometimes take notes or look in books.  It is quite an interesting part of my day to see who shows for the round-up.

Walk #1 – I put on my HEPA-filter mask and go for a walk, no matter how short.  If I am lucky the housekeeper comes wither her UV-bathroom-zapper while I am gone, because I really don’t like being in my room when the zapper is going.

Work Time – Yes, it turns out I am a work-a-holic.  Even though I have quit all official work, I have discovered I need a project.  Sometimes my work is writing this blog, other times making cards for my kids, painting a picture, reading, visiting with a friend or laying in bed thinking about possible projects.

Nap Time – Work time almost inevitably flows into nap time.  I rest until I realize I am really hungry and I order lunch.  This still gives me 45 minutes to continue to nap.

Lunch and leisure – Yay!

Serious nap time – Often I buckle down for a good nap in the early afternoon.

Snack and bike – After a little energy snack, I try to get on the bike, if only for five minutes.  I like to choose “Aloha! Hawaii” for my visual pleasure or sometimes “Explore South America”, combined with some upbeat music to enhance my riding experience.  After my bike ride I get to stretch again on my yoga mat.  Sometimes around this time of day the nurse walks in, and I am lying on the floor behind my bed stretching.  It usually gives them a little bit of a start because they think I fell out of bed, a nurse’s worst nightmare.  I feel badly about scaring them, but I don’t know where else to stretch.  I have thought about making a little sign to hang on my door when I am stretching, “Please don’t be surprised – I am hiding behind my bed stretching and all is well.”

Walk #2 – I try to motivate to get out of my room one more time.  Sometimes a visitor comes and I go out and great them!

Dinner and Family time  – This is usually when I get to Skype my beautiful children and husband back home and be a momentary virtual presence in their life.  I bask in their glow of their smiling  faces and laughter and even bickering.  It is the highlight of my day.  Although it is no where near the real thing, I am thankful for modern technology.  I can’t imagine going this long without seeing them at all!!

Although the routine changes day to day with my varying energy levels and visitors and necessary medical events, the basic structure remains the same.  On my lowest days, when my head hurts and my body aches and it feels like hard work just to eat lunch, the routine holds the strength so I  can be weak.

Leukemia 101 and Music Everywhere

Disclaimer:  Scientific descriptions made in this blog are merely my non-medical intepretation of my condition and may contain technical errors.

The evil part about the 7+3 chemo is the whole first 7 days of toxic chemicals dripping into you, you don’t feel that bad.  You are trapped by the IV-pole and can’t cover much distance, but generally you are able to get around and enjoy peaceful diversions like strolling the halls and going to music concerts.

Me outside again!
Me outside again!

But as soon as the chemo stops and they un-hook you, you start feeling yucky.  Any number of side-effects can begin.  For me, the muscles of my abdomen are cramping and aching and it feels like somebody scooped my insides out.  Partly stomach upset, but mostly just pain.  Somewhere between having a miscarriage and food poisoning.  You get the picture.   I am finally allowed to go outside in the sun and roam the entire hospital, but now it is hard to motivate to make the twenty minute walk out to the front fountains.  Nevertheless, there is nothing like sun-on-skin when you have been inside for eight days, so I do it.

Fortunately (or unfortunately), this trajectory is exactly what the doctors expect, and my blood levels are behaving exactly as they should.  Why?  Bear with me while I explain.

Acute myeloid leukemia is a cancer of the bone marrow myeloid cells which are responsible for making blood.  Although blood appears to be a uniform red syrup, when you look under the microscope blood is more like minestrone soup, a clear broth with things floating in it.  The white blood cells, red blood cells, and platelets are of particular importance and all three are made by the myeloid cells in the bone marrow.  The functions of these three blood cell types are as follows:

white blood cells:  responsible for fighting infection (this is your immune system)

red blood cells:  responsible for delivering oxygen all around your body

platelets: responsible for clotting, or stopping bleeding

So far our medical technology has not evolved to the point where we can target just the cancerous myeloid cells with the chemotherapy;  the only way we know to get rid of the cancerous cells is to attack all the myeloid cells, healthy or cancerous.  The good news is my good myeloid cells will grow back.  The bad news is, in the interim, I have no way of making new blood cells.  As the old blood cells die off (because all blood cells have a shelf-life), I will necessarily have a week or two of feeling lousy.

Low red blood cells means lack of oxygen all over my body and understandably  can cause headaches, fatigue, dizziness, muscle cramps. and other sensations.  Low white blood cells make me highly susceptible to infections, especially from bacteria naturally present in my stomach, mouth, mucus, throat, nose, lungs and sinuses, which I can do virtually nothing about.  Finally, low platelets make it hard for me to stop bleeding.

As time wears on, doctors keep a minimum life-sustaining level of red blood and platelets in my plasma using red blood and platelet transfusions.  However white blood cells are not transfusable, thus the positive-pressure room and HEPA-filter mask until my own myeloid cells bounce back and start creating an immune system again.

When I stop and think about it, the resiliency of the body is a true miracle.  The doctors are killing off the very heart and soul of my body – my blood making factory – present in the center of every bone in my body.  But nevertheless, I can still walk around, breath, eat, read, surf the internet, scraping by on just a few extra bags of red blood cells and platelets.

Here is something fascinating!  Red blood cells are really what makes your blood red!  When they give me a blood transfusion, they are giving me just red blood cells in blood plasma with all other things filtered off.  No surprise, the bag is red.  Guess what color platelets are?  My dad and I have been eagerly awaiting this interesting piece of information, and this morning I finally found out.  Platelets in filtered plasma are yellow like scrambled eggs!  Cool.

As I was doing yoga the other morning, I came across a thought helping me visualize the process in its wholeness.  In yoga, teachers talk about the pause at the bottom or top of the breath.  It is a moment when all stands still, a cease in motion.  The essence of peace.  The stop in blood production over the next week is the pause at the bottom of the breath.  A moment of stillness and healing.  A moment that will inevitably end, and move forward into the next big inhale.

So on day 10, in the midst of this great pause, I woke up this morning not feeling my best.  I was still wrapped in my blanket at 9:30 am getting platelets, and trying to think how I was going to get up and actually do something today.

Then something happened I will never forget as long as I live.  A wiry and smiley man with a folding stool and guitar in hand walked through the door.  I have actually met him before.  He comes to people’s rooms from time to time if they are on a special music-lover list, and plays music for them for about a half hour.  He himself is a true music-lover.  Hc can talk jazz or folk or rock-n-roll.  We made friends right away last time, so I am pleased to see him again.  He sits down starts playing some of his favorites.  Just then, my nurse, a large Hawaiian man comes into change my platelet bag.  To my surprise, as the guitarist, merges into the James Taylor classic “You’ve Got a Friend”, the nurse starts crooning along in a perfect tenor while simultaneously changing the bag.  I start singing too, and suddenly we are a three-part harmony spectacular.  We end laughing and agree we sound pretty good, so we try another Nora Jones tune before my nurse has to get back to work.  We decide we will go on tour of Unit F next time.  (Just kidding.)

So you see, all kinds of miracles happen here.

Fish Food

Strange things happen when you are in captivity.  Last night around 11:30 pm I ate nearly an entire bag of gummy worms.  At least 6 serving sizes.  Except they weren’t worms, they were “Swedish Fish.”

Now this behavior was very strange because I don’t like candy.  When I am picking up Thai take-out, I don’t even look twice at the bowl of jolly ranchers on the counter.  Unless its chocolate, I don’t touch my kids’ Halloween candy.  Not even candy toppings on frozen yogurt appeal. Swedish Fish

Let me back up.  The afternoon was going along fine.  Some exciting things happened.  An exercise bike arrived in my room!  We hung the LAST bag of chemo.  I should have been feeling good, but slowly I wasn’t.  My left sinus under my cheek bone was beginning to feel hot and sore, my head was starting to pound, my jaw bones ached, my stomach was unsettled, and I felt like I had a vitamin stuck in my throat.  Doing what I always do when I don’t feel well, I curled into my bed and started a good book.

Later in the evening, after making notes of my symptoms and taking my vitals, my nurse decided to “keep an eye on it and tell the doctor in the morning” (code for “tough petunias, there’s not much I can do to help you”) and I tried to fall asleep.  My pillow felt like a rock.  On second thought, I think it did become a rock last night.  Anything that touched my pillow started hurting.  The back of my neck, my cheek, my ear, even my wrist.  I could not sleep no matter how I tried, and to make matters worse, the vitamin in my throat was getting bigger and BIGGER.  As the clock ticked on, I was SURE the medication I took before bedtime really WAS stuck in my throat.

I tried drinking two cups of water, but the vitamin sensation only got worse.  Finally I turned on the light, searching for anything helpful.  That’s when I spied the unopened gummy fish package a friend had delivered a few days prior.  Hoping the gummy fish would force anything stuck in my throat along its merry way, I quickly gobbled down two fish.  The feeling didn’t change in the least.  I turned the light back off and lay down.  But now I was thinking about those fish.  Wow, those fish were pretty good.  In the dark, I groped around for the bag and took out two more fish.  By the glowing light of my IV-pole, I could see they were red.  Mmmmm, cherry.  I lay down.  Those were good, too.  What if I have a few more.  After all, I am stuck in the hospital, why not live it up?  And so it went on – up, down, up, down – until the whole bag was nearly finished.  At some point common sense kicked in, and I made my way over to the sink to brush my teeth again.  All good moms know if you are going to eat gummy candy in the middle of the night, you should at least brush your teeth.

Miraculously, after all those gummy fish, I fell asleep.  When I woke up in the morning, my aches and pains were mostly gone, but my stomach had knifes in it, and I knew well enough to stay close to the commode.

However, none of the doctors think it was the fish.  This is Day 8. (Here in the oncology unit, instead of counting time from the Birth of Christ, we count from the Start of Chemo.)  Traditional folk lore suggests Day 8 is when a chemo patient starts to get an upset stomach.  Call me superstitious, but I am still tossing the rest of the fish.

Love to All,


P.S.  Just so you don’t worry, I actually feel quite well this evening.  My diet of strictly oatmeal this afternoon has done wonders, and I even rode the exercise bike and read an entire chapter book.

P.S.S. It turns out the “vitamin” feeling is called “mucusitis” (an irritation of the mucus in one’s esophagus) and is common for chemo patients.  There are drugs you can take to make it better, or you can just wait for it to go away.

Me on the exercise bike!
Me on the exercise bike!

P.S.S.S.  Thank you from the bottom of my heart for all the comments, texts, cards, voicemails, well wishes, e-mails, prayers and love.  I have felt and received all the love, and your support is keeping me smiling and strong every day.

P.S.S.S.S.  Funny citing on The Atrium Walk today:  A sign in unit D (the joint replacement unit) announced “Toileting score down 9% today.”  I laughed out loud.  Maybe we need a toileting scoreboard at home for the twins.

P.S.S.S.S.S.  Interesting Fact: Unit D has a entire closet dedicated to plastic hanging skeletons.  Kind of creepy if you ask me.  I am not sure what my kindergartener would think.

To Sleep or Not To Sleep, That is the Question

Every morning around 7 am, when the night nurse comes in to announce shift change and pass the torch, she always asks in her most gentle voice, “How did you sleep last night?”

This is a loaded question.  She’s asking me to evaluate her performance on the spot because, fundamentally, a good night nurse is one you don’t see at all.  If I tell the truth – there was not much good sleep at all – I undermine all the extra efforts she’s made.  Her quiet voice in the night, her careful use of the flashlight, her willingness to postpone morning blood draw until 5 am.  Truly, I do want to show my appreciation for her efforts.  God forbid I should get the temporary nurse back from floor 3 who turns on all the florecent lights at 1 am just to see how much I weigh.

Me trying to catch up on some Z's....
Me trying to catch up on some Z’s….

The timing is also tricky.  The night nurse usually asks the big question when the her replacement is standing right next to her at shift change.  It is my first chance to make a good impression my next guard.  I want her to think I am an easy patient, cheerful and worth going out-of-the-way to help.  Worth giving an extra half-hour in the shower, disconnected from my IV-pole.  Competent enough to stroll the halls without supervision.  It would be sacrificial to exhibit bad behavior at this moment.

But let me tell you, getting a good night sleep is NOT what a hospital is all about.  For example, let’s look at what happened on Friday night:

7 pm     Greeted by not one but TWO night nurses at shift change.  A regular “F” unit nurse and a “nurse-in-training”.  Don’t let anybody fool you: Two nurses at night is not a good thing. Double the night-time attention.

8:30 pm  The nurse-in-training, a spunky cheerful girl from Africa, chats with me loquaciously.  I really like her.  Sharing stories about her youth and teaching me how to say her name properly in Nigerian, we spend 45 minutes just getting my vitals, a process that usually takes about 10 minutes.  I should have seen the writing on the wall.

9:30 pm  I turn out the lights and go to sleep.  Temporarily.

10:30 pm  I get up to go to the bathroom.

11:30 pm  My African friend is back again to give me meds.  Okay, whatever.  She spends endless time typing important things into the computer.  Finally I get to swallow and go back to sleep.

12:00 am  I have to go to the bathroom.  I kick myself for not going when I was up a half-hour ago.

12:30  am  My African friend is back AGAIN.  I think I am dreaming.  She is checking my toilet.  Definitely nurse-in-training.

3:00 am  Guess who is at the door?  My African buddy.  She needs to check my vitals.  Oh no.  After forty-five more minutes, wheeling a large stand-up scale into my room, and lots of typing, we are done.  This time I am smart – I go to the bathroom, too.  As she is leaving, I ask, Aren’t you going to draw blood?  I mean it is almost 4 am.  Now is the time, right?  “You’re right,” she says.  “That would be a good idea.  Let me go get my stuff.”

4:30 am  Apparently getting the “stuff” takes just long enough for me to fall asleep again.  Lights on, more typing.  Now she has to go get the main nurse to help her.  Tonight is just not about sleep.

5:00 am  Blood is drawn, vials are labeled, nurses are gone.  Ahhh.

5:30 am   I can’t believe it.  I have to go to the bathroom again.  It seems impossible, but my bladder is about to explode.  Did they turn up the flow rate on the saline?!!

7:00 am Luckily I get to sleep in until shift change at 7:00 a.m.   How was your sleep last night Ms. Bennett?  It was okay, I lie.

The next night was different, but not too much better.  This time I have a male nurse from Russia, a small muscular man of confidence and extreme precision.  I have to admit, he makes me a little nervous.  However, it all starts off well.  We make a plan to wake me at 11 pm for vitals and meds, and then let me sleep until 6 am when he will draw blood.  This plan sounds good.  Six hours of straight sleep would feel amazing.

At 11 pm on the dot he wakes me up with military precision.  He is done in about 8 minutes flat, no nonsense.  I also use the bathroom.  (I am getting smarter.)  I am back asleep in no time.  Perhaps I underestimated him, I think.  This could be a good arrangement.

Around midnight, my IV pump starts beeping and I am required to page a nurse.  Although I am sure I just rolled over on the tubes in my sleep, my precise nurse feels compelled to fully investigate the engineering.  “Excuse me ma’am, but I must turn on the lights to check the machinery.”  Tracing the tubes, pushing buttons, using a calculator, he comes to the same conclusion as I; a classic asleep-on-the-tubes scenario.  The lights go out.

Around 1:30 am I have to go to the bathroom.  Oh bother.

At 2:30 am someone new walks in.   “Hello, I am Linda.  I am taking over for your nurse while he is on break.  I saw you were due for your vitals.”  Apparently there was a gap in the communication.  The best laid plans….  So my vitals are taken.

To his credit, my Russian nurse does let me sleep all the way until 6 am before drawing blood and I am thankful.

Last night I had another male nurse, but I am learning to be more accepting of whatever comes my way.  Despite his petite stature and seeming youthfulness, he was quiet, efficient gentle and smart. He woke me once at 11 pm and once at 5 am.  The IV pump didn’t beep. He used the bed scale so I didn’t have to get out of bed.  He even pulled the curtain closed, turned off the computer screen and switched off the hall light on his way out.   I slept almost continuously from 9 pm until 7:30 am.  It was glorious!

“F” is for Forbidden

While I am on chemo, my IV-pole and I have limited boundaries.  We can walk the small circle of rooms on unit “F,” peering into doors to see other sick people.  We can go down a very long, blindingly white hall with signs that say “mail room,”  “linens,” and “surgical supplies.”  Or we can walk through a window filled breezeway to a lovely four-floor-tall glass room called The Atrium.

On both sides of the breezeway and one side of The Atrium, perfectly manicured gardens color the windows with pinks, purples, and greens.  Sometimes there are as many as five gardeners carefully pruning roses and trees with utmost care.  The gardens are complete with benches, fountains and curving paths, beckoning the passerby to come outside and bask in the sun of mother nature.  GetAttachment-3.aspx

Once upon a time, “F” unit patients could actually go outside with their IV-poles and sit in the sun, breathing the smell of the fresh flowers and finding strength in the greenery.  No longer.  These gardens are now forbidden.  On each tempting door hangs the forlorn sign “Temporary Closure.”  Due to the construction of a massive hospital addition adjacent to my building, these outside spaces have been deemed unsafe for patients and employees alike.

I ask the nurses, how long is temporary?  Oh the dust, they say.  Oh the noise, they say.  Construction will go until 2018.  But for unit “F” folk, the fun will not stop then.  When construction on the addition is almost complete, the oncology units will move to the new building while they renovate the old units.  Good-bye gardens.  Why are the gardeners working so hard to maintain gardens no one will ever enjoy?

There are other temptations just outside my reach here at unit “F.”  Through the obscuring vegetation outside my room window, I can glimpse people coming and going with their trays in and out of the Children’s Hospital cafeteria, but I cannot go there.  Every time I open the menu for another meal, I long for the fresh fruit or a green salad.  Somehow the cookies and muffins I used to crave are meaningless.  Do we always want what we can’t have?

Later, I walk in The Atrium again (because there really is no where else to walk) and I see the most amazing thing.  Giant larger-than-life colorful acrobats are dancing in the forbidden garden.  No, it is not the chemo drugs.  The late afternoon sun is reflecting off the oversized art on the wall facing the garden to give the illusion of the colorful acrobats dancing over the flowers.

Suddenly it all comes together.  The acrobat art hangs safely inside the building while the spirit of the art is free to roam about the garden.  These beautiful gardens outside the glass, the pictures of my smiling children hanging on my wall, the choppy Skype connections and virtual social interactions, allow my spirit to roam free among the people and things I love until my body is safe to do so.  Until then, the glass windows and double doors and GetAttachment-5.aspxHEPA-filter mask and other restrictions will keep me safe until “F” stands for “Free to go home.”

I turn on the endless sunset channel.  I can watch a “relaxation video” anytime I want, with movies of real beaches or leaves in the rain.  I simply choose between “Relax” or “Calm” (what’s the difference?) and I am transported to Eternity Beach, Oahu, Hawaii 6:20 am or Asilomar Beach, Pacific Grove, California 6:00 pm.  The gentle nature sounds gently roll out of the handheld TV intercom.  Although it is forbidden for me to really go to the beach right now, with a little imagination I am there.


Getting to Know You, Getting to Know All About You

My mom, my new friend, and me enjoying Fridays afternoon atrium show!
My mom, my new friend, and me enjoying Friday afternoon’s atrium show!

There is a new friend in my life, following me wherever I go, watching me day and night, night and day.  This friend is quiet and never talks back.  We are inseparable, tethered you might say.  Sometimes we get in a bit of tangle, but with patience things are always resolved.  You guessed it.  My new friend is my IV-pole!

There has been a bit of a learning curve for getting around with my new friend. I am slowly internalizing the critical dimensions:  I have about 6 feet of IV tube line plus about 8 feet of power chord before I have to unplug and wrap up the power chord and rely on battery.  The 6 feet plus 8 feet takes me about one third of the way across my room.  In other words, not QUITE to the bathroom.

All night long, all day long the IV pumps me full of medication, but also full of saline, keeping me very well hydrated.  I mean VERY well hydrated, like once-an-hour-got-to-go-pee hydrated.  So once an hour, I get up and do my IV-pole bathroom dance, a little like Fred Estaire with his hat rack: (paste into your browser)

First wrap the chord, da da da, then push the pole, da da da, over past the bathroom where the IV-pole fits, da da da, then open the door, da da da, unwind my IV lines, da da da, crack the door but don’t smash the lines, da da da, then over to the sink to wash, da da da, then back to the plug, da da da, then unwind the mess, da da da, and back to bed!

For longer excursions out into the halls and the atrium to browse the same artwork for the twentieth time, the routine is similar, but I get to add in my HEPA-filter mask and a few doors to up the ante.  Sometimes I get lucky and a passerby holds a door, but I can do it by myself.  I am proud.

I can do other things, too.  I can do a modified morning yoga practice.  I can have my customary after-dinner solo dance party.  One time I even did a whole ballet bar routine.  It is amazing the things that arise out of boredom.

Clothing …  I didn’t think of clothing problems the first night.  With my snuggly soft T-shirt and soft bra on, I asked the nurse, do I need to change into a gown or can I stay in these clothes?  “Those clothes are fine,” she replied and that was that.  But later when it was time to snuggle up, I didn’t want my bra on.  A bra is just not something I like to sleep in.  I thought about the 3-D puzzle configuration of my garments + arm tubes and decided there was no way to get out of it.  I was stuck like this for 7-days.  I lay down in the dark and tried to sleep, but I began to panic.

I am going to be in these clothes for 7-days.  I am already starting to smell.  I can’t sleep in these clothes for 7-days.  I can’t even sleep right now.  Toss, turn, toss, turn.  Surely all sleep possibilities are doomed by my ridiculous choice to stay in my own clothes.  Toss, turn, toss, turn.

Then laying there in the dark, from the foggy memories of my girlhood youth, I recalled something all modest girls learn to do: change out of their bathing suit at the local swim club without ever taking their shirts off.  There must be a way!  After about twenty minutes of trial and error, and moments of complete entanglement, this arm over that strap, strap stuck around the sleeve, sleeve around the neck, bra around the neck  (praying a nurse wouldn’t walk in at this exact moment)…slither all the way down the body – I did it!  The bra was overstretched and ruined, but I was free!  I still had my cozy shirt on, my tubes connected, I went right to sleep.

The next day I learned I could change my shirt  and shower (!!!!) with a special balloon over my arm at IV-bag change time.  I did.  It was heavenly.  My IV-pole was happy to let me take a little break.  All good relationships need a little space now and then.

Love to all of you out there and thanks for reading.  Your support is keeping my spirits high.


Toxic Mama

WARNING:  This post contains discussions of urine color and chemo injections. Those who are especially sensitive may want to stop here.

In the last 24 hours more chemicals have been injected, swallowed and dripped GetAttachment.aspxinto my body than ever before.  Here is the list as best I can recall:

  1. contrast – to stain my brain for the MRI
  2. steroids – to ease inflammatory reactions to the chemo
  3. round-the-clock anti-nausea – the nurses really like to emphasize the “round-the-clock” part. I don’t know why.  Maybe to prove the nurses are working “around the clock”?
  4. mega-birth control – to make sure I definitely don’t have my period now and possibly ever again (When the young and beautiful, teary-eyed Resident with her fresh engagement ring timidly broke this news to me, I had to refrain myself from jumping up to high-five her, and instead tell her, in my most gentle voice, four healthy kids is plenty.)
  5. uric acid control – to prevent the chemo from making my urine too acidic (yikes!)
  6. liquid tears eye-drops – beats me
  7. three different kinds of laxative – obvious
  8. IV drip saline solution – hydration

And then the BIG GUNS…(I must now go get my notes because these words are as hard to remember and pronounce as Japanese vocabulary lessons)…

9.  A 24-hour IV drip of CYTARABINE (sye TARE a been) – with side-effects including but not limited to rash, hives, red skin, wheezing, fever, sore throat, sinus pain, painful urine, mouth sores, excessive bleeding, shortness of breath, nausea, diarrhea, bruising, fatigue, weight gain, weight loss, kidney problems, pancreas problems, hair loss…and just about anything else you can think of.

and drum roll …

10.  DAUNORUBICIN (daw noe ROO bi sin)

I could tell this was the bad one right away.  First of all it is red.  Not red like pink, but red like somewhere between blood-red and fuschia.  It comes in a giant preloaded clear syringe, carefully mixed and measured in a Stanford lab and triple-bagged with danger stickers all over the outside.  This chemo chemical is so potent, a second nurse has to be called in to double-check all labels and numbers and quantities, a job only “chemo-certified” nurses can do.

You should see the protection the nurses put on!  Full face masks, thick gloves, and a full body suit.  Clearly the nurses don’t want to have any contact with this red rocket fuel.  Carefully the nurse injects the poison into my arm port ever-so-slowly over the course of 15 minutes.  The tone of the room turns serious.  “If done incorrectly, this chemo can instantly destroy your arteries and cause heart failure,”  she says.  Is this something I really want to know at this moment?  I change the conversation.  “So, do you have children?”

I feel pressure over my heart, I feel my finger tips tingle.  I tell her.  Pain she asks? No.  She goes more slowly.  I still feel a little pressure, a little tingling, but nothing else.  When she is done, the pressure and tingling go away immediately.  Phew!  I survived heart failure this time.  One down, two to go.   I will get three doses total over the course of the next three days, half the lifetime total allowable amount of six doses.

After the injection is done, the mood lightens up, everyone smiles apparently as releaved as I am.  As they are leaving the room, a last minute warning, “Don’t be surprised if your urine is a different color.”

Later I see what they mean.  My commode becomes a technicolor light show!  First   bright magenta, later tangerine orange, ending in a gentle pink before returning to its customary pale yellow.  Nurses and nurse assistants wearGetAttachment-2.aspx GetAttachment.aspx full protective gear when emptying my commode.

I begin to notice the new signs around my room.  “Chemotherapy precautions” says a red sign on the door of my commode.  Red stickers all over my IV tubing exclaim “Chemotherapy!”  And on the bag of fluid dripping into my body, “HIGH ALERT.  Cytotoxic material.”  Its suddenly dawns on me.  I AM TOXIC!

My very good friend tries to soothe me.  Jenny, you could never be toxic.  It’s only temporary. But its kind of exciting!  I am toxic!  It am powerful!  Later she sends me my temporary theme song, courtesy of Britney Spears.  I think she’s right on the mark: (paste into your browser)

After two days of chemo, I am doing pretty well.  The doctor’s main concern is my face is turning red, possibly a minor sign of allergy to one of the chemo drugs, treatable with benedryl.  I laugh.  Of course I am turning red.  I’m toxic!

On another note, I went to see a music show in the atrium of the hospital yesterday.  Guess who was performing?  Experimental jazz drummer Rob Hart and his trio!  Go figure?  I am sending them over to MRI.GetAttachment-1.aspx

A Rude Awakening (aka Drums and Space Hospital Style)

Before I went to bed last night, a nurse came in and asked me whether I would prefer to have an MRI of my brain done in the middle of night or in the morning.  What kind of question is that?  The morning of course!

Festival Antics - Hospital Style
Festival Antics – Hospital Style

So this morning, right after my 4 am blood draw and my 5 am weighing, they promptly aroused me at 6 am to go to MRI.  Now the funny thing is I am allowed to walk anywhere I want all around the hospital all by myself as long as I have my trusty-dusty HEPA mask (and now my IV pole), but if I need to go to a procedure, I have to go in a wheel chair.  Does this make sense?  I suppose so.  They want to make sure you have a good time during the “transport,” to distract you from the torture for which you are headed.  (Did I tell you guys who push wheel chairs are called “transport specialists”?)  Its like the Alice-in-Wonderland ride in Disneyland, zooming around in a little train with doors flying open right before you run into them.

I’m sure a lot of you have been through the MRI thing but until now, I never had.  Yes, I had seen movies where the patient goes into the large round hole  on a tray.  Yes, I knew people complain about feeling trapped in the small space.  Twice I even stood by while my daughter was wheeled away to the MRI, confident it would be a peaceful experience.  This MRI will be no problem for me, I thought; I will meditate through it.

But somehow I missed the memo about the NOISE.  It turns out an MRI is all about the noise.  Short piercing, low vibrating, long noises, high noises, knocking, and drones.  All extremely LOUD.  Loud enough to vibrate your brain, loud enough to vibrate your spine, almost loud enough to rattle you off the table.

With the first knocks I nearly jumped out of my skin.  Woo00-wee, this is going to be an experience, I thought.  After recovering from the initial shock, I closed my mind and tried to absorb the incredible sound chaos;  there was nothing else I could do.  Each grating sound hitting a different fundamental frequency of a distinct part of my body – first my hair line, then my sinuses, then my neck, spine, ear lobes, ear canals…Closing my eyes I floated back to Mickey Hart’s corpse-vibrating drum jam during the San Jose Saturday night Dead show a few weeks ago.  The MRI is like someone took his sound clip, filtered out the musicality, and left only a poor mechanical interpretation of his art.

Suddenly I had a brilliant brainstorm.  Imagine if you got an experimental jam band of very talented musicians to sit-in on the MRI session.  The musicians could play along to the MRI noises, give the sounds a context, some musical texture, an excuse to be so soul-vibrating.  What about a symphonic piece, a piano sonata… It would have to be similar to Beethoven, entirely dramatic.  Nothing else could justify the intensity of the MRI cacophony.  I began to hear the music rolling up and down the piano, feeling the large sound-ful chords in my hands. And then when they finally projected me out of the tube, the piece concluded into a beautiful simple melody, a floating scene in a meadow.  The MRI was done.  I survived.

From what the nurses tell me, this journey on which I have just embarked is not so unlike a Dead show.  It started with a little partying, but now on chemo day 1 (of 7) we are moving into the more contemplative jams.  Inevitably we will transition into and out of a dark, spooky drums – space session, perhaps more than a few times.  But always emerging at the end with a rocking conclusion, perhaps an encore or two.  See you on the dark side of the moon.

Love to all, Jenny

P.S.  I know that’s not a dead song.