Archive | December, 2011

It’s Okay to Laugh

15 Dec

Cancer isn’t all gloom and doom, no matter what people may think.  Or, at least, it shouldn’t be – a little laughter from time to time makes it easier to get through.

I have always been on the lookout for funny little quirks in my environment.  Here are a few amusing sketches and observations:

French vocabulary lesson

At the University of Geneva Hospital, I was required to check in two days before my kidney surgery to undergo all the necessary pre-op procedures.  By then I’d lived and worked in French-speaking countries for four years, so I had a very solid grasp on the language.

There are certain things that you don’t talk about at school or at work, though, such as your private anatomy.  In the hospital, all patients were required to take two Betadyne baths before their surgery, and a list of instructions was supplied along with the Betadyne bottle.  Most of it was pretty standard – wash your face, behind your ears, underneath your fingernails, between your toes, and… your pli interfessaire.  Literally, your “inter-buttock fold”.

I guess that’s how you say “buttcrack” politely in French.

Ouch

When I was prescribed an antibiotic to treat my gallbladder infection, I read the package insert in order to be informed about any possible side effects. In doing so, I discovered that it, in combination with another drug that I was taking, can cause a rupture of the Achilles tendon.

I so did not want to know that.

My Achilles and I took it very easy for the following week!

I love my oncologist

In order to be able to stay in Geneva and take care of me as long as possible, my mom had to apply for a special residence permit with the immigration office.  My oncologist was required to fill out some paperwork for the application.  The papers stated “please fill out electronically”, but the OCP didn’t provide a link to an online form.  So in huge letters on the hard copy, the doctor wrote, “HOW?!”

Just call me Miss Bubble Wrap

I’ve never heard of chemo side effects that were climate-dependent.  That is, until I experienced one first-hand.  Geneva has a fairly mild climate, with temperatures that rarely exceed 85 in the summer.  Texas, on the other hand, is much hotter, with temperatures well over 100 on many days.  The change in temperature made my skin erupt in bubbles full of air, just like Bubble Wrap.  The bubbles were small, ranging from the size of a pinhead to the size of a frozen raindrop.  Size notwithstanding, they were just as fun to pop as real Bubble Wrap bubbles.  There’s a reason they’ve turned Bubble Wrap into a virtual app for phones – popping it is addictive!

I totally made his day

No, I didn’t do anything naughty.   I just took home the no-skid hospital socks the technician gave me to wear during my MRI.  My dog Osker did eat the last pair I had, after all.  The MRI tech couldn’t have been happier.

Anatomically incorrect

When I switched from taking Sutent to Afinitor, I began retaining fluid like crazy.  My feet, in particular, were dreadful – I could barely fit them in my shoes and they developed nasty stretch marks.  When the physician’s assistant saw how bad the problem was, she told me that I needed to either wear compression hose or learn to pee out of my toes.

Given my druthers, I druther have learned to pee out my toes.  It would be much more convenient, especially in the hospital.

Floaties

The last official step in converting to Judaism is a ritual trip to the mikveh, which is sort of similar to a baptistery pool in Christianity.  You have to submerge your (completely naked) self in the mikveh three times while saying the appropriate blessings.  Now, when I was a child, I could not float to save my life.  I was always the worst at floating in my swim class.  You would think that a 100-pound weight gain would make it easier to sink, but the opposite is true – fat is very good at floating.  When it came time for me to dip in the mikveh, I could not, for the life of me, convince my boobs to go underwater.  I had to grab the bar in the pool and haul myself as far down as possible, which technically is a no-no since every skin surface is supposed to touch only water.

My friends never did let me live it down, nicknaming my boobs “the floaties”.

Seriously? You had to ask?

I go to a specialty oncology clinic for all my doctor’s appointments and tests.

It very quickly became apparent to me that the paperwork that they used for various patient procedures was not designed specifically with the clinic in mind.  Instead, it was generic, asking, “Do you have a history of cancer?”

Nope.  I’m healthy as a horse.  (What do you think?!  Of course I have a history of cancer!  Otherwise I wouldn’t be here!)

Here, chemo chemo chemo!

C’mere boy!

It’s always worth it to read the fine print on any paperwork you receive.  Not because you’ll learn anything important from it (although sometimes you will, if you manage to understand it all), but because it is often poorly written and proofread, which can lead to funny wording like this, printed on my box of chemo:

Store at room temperature.  Excursions permitted between 59 and 86 °F.

As though I were going to put it on a leash and walk it around the block.

Danger! Danger!

Is our common sense really so lacking?  Label on the side of my box of Omeprazole:

Drug Warning: Do not take if allergic to Omeprazole.

It’s Unfortunate

My Swiss Social Security Disability benefits go up for review every year, and part of the enormous package that I have to send in is a letter from my oncologist stating to what degree I’m disabled.  My oncologist is Indian, so sometimes her turns of phrase in English are a little quaint.  In her letter, I am characterized as “an unfortunate woman with renal cell carcinoma.”  To be described as such kind of cracked me up.

Insensitive

These are the two options to choose between on the hospital’s patient release paperwork:

Patient released on ______________

-or-

Patient expired on ______________

Wow. I didn’t realize we had expiration dates stamped across our foreheads!

Sometimes reality isn’t quite as it seems

Or is it?  This sign was pasted over a button at the doctor’s office:

You left out an important question

One night I couldn’t fall asleep, which is very unusual for me — my medicine usually makes me very tired.

Anyway, I discovered that paid programming starts at 3am on the History Channel.

Paid Programming: This is a paid advertisement sponsored by [XYZ Corp].

PP: Do you use the bathroom with increased frequency?

Me: Yes.

PP: Do you suffer from urgency and fear having an accident?

Me: Yes!

PP: Do you get up 2 or more times in the middle of the night to urinate?

Me: Yes!

PP: If you answered “yes” to any of these questions, you may be suffering from an enlarged prostate.

Um, no.  Perhaps they should have begun with the question “Are you a man?” Nice try, though.

Oh where, oh where did the little R go?

Oh where, oh where could he be?

Rs seem to like to hide from me.  During my days as a proofreader in Switzerland, I came across a document that was inappropriately titled Panties with built-in cooking appliances. My doctor’s office in the States had a lot of missing Rs, too — their questionnaire wanted to know whether or not I had Inging in the ears.  (It also wanted to know whether or not I had naal discharge.)  By the end of the sheet, I wanted to know if I had vision problems or if they lacked a qualified professional to draw up their paperwork!

There’s no need for alarm

Seen on the alarm that rang in my hospital room:

Alarm.  No action needed.

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Letters to Various People Whom I’ve Encountered on my Cancer Journey

14 Dec

 

Dear hospital architects,

The floors in the neurosurgery ward should be flat.  Flatter than a pancake.  Flat as in no metal seams in doorways.  No grooves or ridges or depressions in doorways.  Rattling operated brains in transport is not such a great thing.

Thanks,

One of the rattled brains in transport.

Dear fellow patients,

A word of warning: do not, I repeat, do not have an endoscopy, an MRI and a CAT scan all in the same day.  It will make you feel like a medical experiment gone wrong.

Sincerely,

A patient who made the mistake of letting the doctors shoot her up with too many chemicals in a 24-hour period.

Dear people in the two-door black Jeep parked next to us at Chili’s,

I’m sorry I threw up all over the pavement right at the driver’s door.  I promise I didn’t have anything alcoholic to drink.  And I didn’t deliberately make the puddle that big, either — the wind kept blowing the vomit sideways out of my mouth.  And I apologize for the brilliant neon orange color — I ate corn soup and drank a Shirley Temple.

And don’t worry — I didn’t eat anything bad.  I just coughed really hard and sucked a bunch of air into my stomach.  No food poisoning.

Sincerely,

The girl in the white Camry whose mom told her to hurry up and finish vomiting so we could get out of the parking lot before you came out of the restaurant.

Dear ladies on chemo,

One of the things about not having hair is that everything about your face stands out more.  This is why you should tone down your makeup.  I wear a subtle eye shadow, eyeliner and lip gloss only.  Everybody loves it.  Nobody realizes I have on that little makeup.

Also, beware of the sun.  As soon as my cheeks got their first taste of sun for the season, I looked like a freckle monster.

Sincerely,

One who’s been there, done that.

Dear Mom,

You’re making me feel a little like a water buffalo getting pecked on by a secretary bird.

Scratching and pecking me to get rid of the radiation-burned skin on top of my head is not at the top of my priority list.

Love,

Your Spice

Dear ladies on chemo (again),

Please allow me to remind all of you out there how important it is to always wear a bra in public, no matter how far you’ve decided to let yourself go.  This may require owning more than one bra, just in case one happens to be in the wash.

Sincerely,

The braless girl who ran into her rabbi in the tram on the way to the health insurance office.

Dear new neighbors,

I promise that I’m not a flea-ridden ape masquerading as a Richard Simmons wannabe. Even though that’s what I look like after Gamma knife, and I know you can see me through the front window.

Dear ER medics,

I don’t know if it’s my magnetic personality or what, but y’all just can’t seem to resist ripping my clothes off!  I really liked that skirt, you know – it was the only one that fit me, and I imported it from Switzerland.  It had an elastic waist — next time can’t you just pull it straight down like you pulled off my underwear?

Sincerely,

One who is rather partial to her clothes.

Phone Tag

13 Dec

 

How many telephone calls does it take to schedule an MRI?

Call 1:

Them: Hi, we’d like to schedule you for an MRI on Friday at 2:45 in Physicians’ Plaza.

Me: kthxbye.

Call 2:

Them: Hi, we’d like to reschedule you for 3:15.

Me: kthxbye.

Call 3:

Them: Hi, we’d like to change the location to Methodist Hospital.

Me: kthxbye.

Call 4:

Them: Hi, we need to verify your insurance information before your appointment.

Me: kthxbye.

The amount of inefficiency in the medical community can be mind-boggling at times!

The Value of Good Friends

12 Dec

 

I never realized until recently how unusual it was for all my friends and family to rally around me and support me as much as they have since my diagnosis.  Apparently, most cancer patients lose touch with at least one person that they were close to pre-cancer because that person simply didn’t know how to deal with the diagnosis and carry on the relationship.  The opposite was true for me – when my longest friend Renée asked me what she could best do for me from halfway around the world, I told her that it would be nice to have mail in my mailbox that wasn’t related to medical bills.  She emailed everyone she could think of and asked them to send me a postcard, and soon my mailbox was overflowing with letters from almost every continent.  I had letters from family, college friends, members of my former church, and even some of my high school and college teachers.  Some were people whom I had not heard from in years, and yet they chose to reach out and re-establish a connection when they heard about my illness.

Of course, if you know Renée, you know that she wouldn’t just stop there.  She planned a little surprise for me, inspired by a present her then-boyfriend (now husband) had given her the first year she worked through the summer and couldn’t go home.  He came up with the idea of sending her a video of encouragement, in the form of a series of pictures of her friends holding homemade signs that formed a message of support.  So as a spin-off of the idea, she had my friends and family and teachers from around the world take a picture of themselves holding encouraging signs and set it to the Lady Antebellum song “Never Alone”.  The signs were in English, French, Spanish, Hebrew, and even Arabic, and just like the postcards, they came from all over the world.  Some of them were brilliantly funny – my friend Karin and her boyfriend Alex were travelling in South America at the time and living in a tent, and they sent a picture of Karin holding a sign in French saying, “It could be worse – you could be living here with this guy!”  Another favorite was from Renée herself – she was posed next to the ogre in Seattle, wearing a cowboy hat and a pair of cowboy boots but holding her (enormous) sign in front of the rest of her body, making it appear as though she were undressed.  It was her way of reminding me of the practical joke I pulled on her in college, showing up in her bed naked, wearing only her black cowgirl hat.

It is incredible what a valuable support good friends can be.

Perspective

11 Dec

 

People who have never had cancer simply lack the perspective to understand the day-to-day realities of living with the disease.  If you haven’t experienced it, it just isn’t possible to fathom what patients go through.  Even people who spend a lot of time around cancer patients, such as caretakers, don’t have a good idea of what it feels like to have the disease.

It can be frustrating to deal with people who lack perspective.  People who think that you should be able to get back with them immediately when they phone or email you, not taking into account that you may be feeling too ill to be social.  People who have preconceived notions about what you should be able to do, never having experienced how chemo and other cancer-related medications devastate the body and mind.  People who think that their personal situation is the most awful thing that could happen to anybody.

Sometimes you just have to sit there and tell yourself, It’s okay.  Someday, in the future, when they become one of the 41% of the American public who develop cancer in their lifetime, they’ll change their tune.

Once I went to the pulmonologist for an asthma test.  The test consists of breathing into a tube normally, then sucking in a deep breath and blowing into the tube the way you blow into a breathalyzer.  (I’ve never blown into a breathalyzer before, but I’ve been in the campus health center when kids came in to be treated for alcohol poisoning.)

I performed the test twice — once before and once after a nebulizer breathing treatment (which is also just breathing normally into a tube — the only difference is that you’re breathing medicated air).  Afterwards, the nurse came up to me and asked if I was all right.  A lot of people say this is the worst test they’ve ever had to do in their life,” she confided.

I kind of looked at her cross-eyed and said, I’m fine… after all, I’ve had brain surgery twice.”

A definite lack of perspective.

Negative Emotions

10 Dec

 

My friends and family have all been surprised by how strong I’ve been emotionally since I was diagnosed with cancer.  It’s true that I’m no Puddleglum, but nobody diagnosed with a terminal illness can stay happy all the time.  It’s perfectly normal to feel down or even depressed – after all, your life is definitely not going the way you want it to, and it never will again.  There have been several occasions on which my happy got bitten in the butt and had to take refuge in its hidey-hole.

The majority of my frustration stemmed from not being able to attend synagogue as regularly as I wanted to after my brain surgery.  The liturgy features several readings on peace and prosperity, and those helped keep me centered and grounded.  The first reading of the Friday evening service from the prayer book used by my synagogue in Geneva (my translation):

O Lord, source of all forgiveness, teach us Your ways.  Fill us with the desire to do good so that we will discover the true meaning of our existence through Your commandments.  Let peace, light and joy live on in this synagogue, in the homes of Your faithful, and throughout the entire world.

Not having Jewish caretakers didn’t help matters much, either.  You can tell the hospital that you don’t eat pork, but there isn’t a grain-free diet available for Passover, and while they don’t schedule procedures on Christian holidays because everyone is off work, they really don’t care about making sure procedures aren’t scheduled on non-Christian patient’s religious holidays.  While I was in the hospital to have my gallbladder out, I missed Purim because I was sick with an infection and the massive antibiotics I was taking were significantly disrupting the normal function of my digestive system.  (I’ll leave the rest to your imagination.)  I also missed Passover, one of the most important festivals for Jews, because I was scheduled for an ERCP endoscopy.  It took a full two or three days for the discomfort associated with the air they blew into me and the tissue they clipped to dissipate.  Thankfully, my Swiss Mom gave me a menorah and candles to be able to celebrate Hanukkah at home.

During the long Swiss winter following my diagnosis, the doctors were of the opinion that I only had a few more months to live.  I remember climbing into bed with my mom, sobbing “I don’t want to die!”  A few weeks later, when my best friend Renée came to visit from the States, she flung herself onto me, crying the same thing.  That was definitely a low point.

Another problem surfaced when I was given an anti-seizure medicine that interacted badly with another of my medications.  I was depressed, irritable, and angry, and even when I was knocked out with sedatives in the hospital, I was still lashing out and grabbing my mom’s hands hard enough to make them hurt.

There are ways to get over the negativity, though.  I had a list of upbeat, happy songs to listen to, including “Love Today” by Mika.  How can you not be happy after dancing around (softly, so as not to annoy the downstairs neighbors) and singing Everybody’s gonna love today, love today, love today!  It also helps to make lists of things that you’re thankful for, no matter how small they may be.  There is a line of thinking in Judaism that challenges us to say 100 blessings a day.  I’ve never come anywhere close to that number, but I have always tried to see joy in the little things in life.

A sample happy list that I compiled one day:

  • hearing my favorite birdy when I woke up
  • bendy straws
  • puppy dog dirt under my fingernails
  • indoor plumbing
  • feeling slightly better

It definitely helps if you have a system in place to cheer you up on the down days.

I used to be the strongest

9 Dec

 

When I was a little girl, I was always the tallest in my class.  I have a picture of my preschool ballet recital in which my classmates and I are wearing white leotards with fluffy white tutus and sparkly silver sequins, and the next tallest dancer only came up to my shoulder.  By the time I was in 1st grade, I was taller than many of my teachers, and by 5th grade I was taller than them all.  This led to frequent requests to retrieve items from high shelves and help move furniture around the classroom.

Once, my 5th grade teacher sent me down to the cafeteria to help put away chairs after an assembly, but the cafeteria lady told me that I couldn’t because I was a girl and I would wind up hurting myself.  I promptly picked up a stack of chairs larger than those the boys were carrying and took them to the janitor’s closet, just to spite her.

I also had a friend, Marjorie, who had surgery to correct scoliosis in the middle of the school year.  Afterwards, she had gained about 3 inches in height and wasn’t allowed to pick up anything heavier than a fork or spoon due to the weakness of her back.  This meant that she couldn’t carry her school supply tub from classroom to classroom, so our teachers picked me to carry hers on top of mine.  The two stacked tubs were heavy, and sometimes when we had to stand in line in the hallway for a long time because our next teacher’s class had run long, I longed to be able to put them down.  But I never gave in.

I never did play sports because I didn’t run very fast, but I did take dance class for an hour every day in high school and I rode horses for fun.  Even then, I didn’t consider myself to be particularly active or strong.

It’s amazing how cancer can sap your strength, though.  Even the simple act of walking around becomes difficult, and once you quit walking around on a regular basis, you lose a lot of muscle tone and the ability to stand easily.

So of course I was out of my mind when I tried to go horseback riding in the middle of the summer.

I managed to get the horse (a pretty little dun-striped horse named Sassafras) groomed and tacked, but by then I had very little energy left.  (The fact that it was over 100 outside didn’t help, either.)  I managed to mount the horse with a decent amount of assistance, but I only stayed on for 5 minutes before turning white and needing to get off.

It was a very humbling experience, and a reminder of how much cancer can take away from you.  But it was worth a shot.