Fear Of The Unknown

 

We all know what it feels like.  That feeling that there’s a secret that’s lurking in our bodies.  That dread that what can’t be seen or felt or known is hiding inside of us.  It’s inescapable.  The fear of the unknown.

I went for my three month checkup with my oncologist last week.  This was the longest separation I had experienced from her since the year and half I was diagnosed.   It was a routine appointment without incident.  I had questions about some side effects of the new medication I would be starting.  But my last question was about recurrence.

“How will I know if it comes back before I’m symptomatic?”  I asked because at my cancer center, they do not do blood tests for cancer markers.

Her answer was, “Well, we won’t know until you show symptoms like a cough without a cold or a persistent headache that won’t go away.  Then we’ll do some tests.”  And that’s it.  That’s all they can do.

I understand and even agree with the reason why they don’t do blood tests for cancer markers at my hospital.  My oncologist said that it hasn’t been the recommendation since 2006 and she and the hospital fully support that recommendation.  She said that this test creates too many false positives.  False positives result in testing which contain radiation.  Why would we want to subject our bodies to more radiation than is necessary?  Then, if there’s a false positive and we don’t see anything, we have to test again to see if anything changes in the next few months.  Then, how are we spending the next few months?  We are spending it filled with anxiety and fear over what might be happening in our bodies.  And that’s no way to live.

“But what if something is growing?  Don’t we want to know about it sooner rather than later,” I asked?

“It doesn’t matter if we catch it when it is small or when it has caused symptoms.  We don’t treat any differently.  You get the same treatment.  And early detection at stage four has not shown to affect or alter the length of survival,” she informed me.

So, what that means is, I could have a small dot in my brain and if we catch it early, we could treat it and I could die in a year. Or not.  But if we catch later, I’d get the same treatment and I could still die in a year.  Or not.

I spoke to my therapist about this recently.  I described it as like having a piano hanging over my head ready to plummet at any time.  It may never drop or it might snap after the slightest breeze.  Anything can happen.  We can never predict or know for sure.

And that’s terrifying.

But this is it.  This is how I live the rest of my life.  This is the gift that cancer has presented me.  A life of uncertainty.  I fear not knowing what is happening in my body.  The fear of not knowing what the next day will bring.  Because I understand that life can change in an instant. So I live afraid.  I live fearing the unknown.

 

Bits of Happiness #23

I survived my first week back at work after my DIEP Flap.  It went pretty well.  All of the students that I was seeing previously were really happy to see me.  They all told me how much they missed me and loved having me back.  For the most part, they were really well behaved, too!  I wonder how long that will last?

The week wasn’t without incident.  I started a new residency.  The students in this class are fantastic!  We had a really great time and I think they will end up creating a fantastic piece of theatre by the time June rolls around.  But the principal of the school…well…I think she might be crazy.  She yelled at me because I was OVER-prepared!!!!!  The group I’m teaching are ELLs (English Language Learners) and I was told that their level was very low.  When I hear this, I prepare a lot of visuals with vocabulary words I will be using.  I got yelled at by the principal that they knew all of this stuff and shouldn’t be doing it.

I let her know that it was my first day and since I never met them, I was just trying to be prepared.  My mistake, obviously.  Next time, I won’t prepare anything and maybe that will be better!!!  (I lie, I’ll keep doing what I’m doing because what I did ending up being fucking awesome so take that stupid, crazy principal!!!)

But the long days and the commuting have really exhausted me.  I feel a little something like this.

At least I’ll sleep well tonight.

What Lies Beneath

“In an art form that deliberately conceals the enormity of effort that goes into its creation, we are not meant to see behind the curtain.  But I think that this does a great disservice to the dancers, and that having a sense of what lies beneath both enhances our experience of the performance and leads to a more profound appreciation of the dancer’s essential being.” -Rick Guest, photographer

The thing I admire most about ballet dancers are their ability to make the super human look effortless.  The leaps, the spins, the balancing on toes from movement to movement…it’s as if their bodies are being carried by the wind.  Or their spines are jelly rather than bone.  Their legs are pulled up straight by a string controlled by an invisible puppeteer.  But what is not often known to, or considered by the audience are the hours upon hours of grueling rehearsal.  We don’t see the bruises or see the winces from the sore muscles.  We never see the sweat wiped from faces and chests backstage between entrances and exits.  We never see the blistered or broken toes that are hidden by the delicate, pale pink pointe shoes.

It is the job of the dancer to dance through and in spite of the pain.  Just like an athlete who must still get a goal, a touchdown, or land solidly, without faltering from the uneven parallel bars despite sprained and broken bones.  The show must always go on and it is the job of the artist to hide the hard work and the pain beneath the costume.

After six weeks of taking a medical leave of absence to recover from my DIEP Flap reconstruction surgery, I will be going back to work.  While I love my job and can’t wait to see my students again, I’m feeling trepidatious about getting back to normal life.  I have recovered well, without much incident, but I feel like I’m still recovering.  I can get around and move normally if I’m careful but I don’t have the same energy or endurance as I did before my surgery.  I get really tired in the middle of the day and find it hard to focus or get my energy back without resting.  Each week I experience dramatic improvements and I have every reason to believe that within the next few weeks my engery and endurance will return.But for now, I feel like I have to hide what I feel.

I am always saying, “fake it ’til you make it.”  I say it to students who tell me that their too tired to get up from their seats to play a game or perform a scene.  I tell them that if they fake having energy, that soon they really will be energized.  It’s mind over matter.  If you put on a smile, eventually, you will feel happier than you did a few minutes ago.

I did this throughout chemo and radiation.  I had to hide my fatigue under the costume of smiles and exuberance.  It ended up working for me.  And now I need to do it again.  I must put on my costume and conceal the awful scars that lie beneath; the scar from hip bone to hip bone, that show all of the hard work and healing I have had to endure these last six weeks.  My students don’t care if I was cut in half on January 8th.  And they shouldn’t care.  I’m there to do a job and the show must always go on.

So, on Monday, the alarm clock will go off.  I’ll groan and complain as I walk to my shower.  But by the time I get off the train and walk into school, I’ll have a smile on my face.  I will teach effortlessly, with grace.  No one will see the work it’s taking for me to keep going.  And maybe I’ll get so lost in the moments, the laughter and stories, that I’ll forget for a little while myself.  No one will see what lies beneath.

Awesome Breastforms

I was at my physical therapist’s office today and as I was getting undressed, I noticed that she had a little knit boobie on her desk.  “What is that,” I asked?  I thought it was one of those little beanies you put on babies when you’re breastfeeding.  But no, that’s not what it was.  It is a breast form, by Awesome Breastforms, for women who find a traditional prosthesis uncomfortable or too heavy.

The great thing about these breast forms are that they are hand knit or crocheted by volunteers.  These volunteers not only custom make a breast form but they pay for the yarn and the shipping!!!  That means that there are many women (and men, maybe) who not only give their time but there money to make a difference in the life of a woman who has gone through breast cancer surgery.

I’ll be adding the link to my Freebies section (see above) but I wanted to share this resource with you now.  If I knew about this before my reconstruction, I would have gotten one for myself.  Wanting a little boobie pillow isn’t a good enough reason for one, unfortunately.

Let me know if you get one!!!!

Bits Of Happiness #22

“You don’t appreciate the present until it is the past.”

-World of Tomorrow – Oscar Nominated Animated Short, 2016

Cover art from “World of Tomorrow,” Oscar nominated animated short film, 2016.

Learn more and watch the trailer here.  It was so cool seeing all of the nominated animated shorts tonight.  This one was my second favorite.  My favorite was a short from Chile called,  Bear Story.

 

When Your Mind Goes “There”

Frida Kahlo’s “Thinking About Death”

One of my earliest memories is when I was about two years old.  I was having an asthma attack.  I was always having asthma attacks.  It must have been pretty bad because I remember being wrapped up in my blanket by my mom and being rushed into the car.  I remember the urgency.  I don’t remember being in pain or discomfort.  I don’t even remember my parents.  But I remember the tension and fear around me.

For much of my early childhood I was sick because my allergies were so bad, it would cause bronchitis.  I was always missing school.  One Halloween, I sat at my doorstep in my Strawberry Shortcake costume as other children rang our doorbell to get candy.  My hay fever was so bad I couldn’t go outside and trick or treat.  I also remember going on a trip to High Rock, a nature preserve near where I lived in the spring.  By the time I got back to school, my eyes were swollen shut and I was wheezing.  This is how I spent my childhood.  I was sensitive.  Delicate.  I believed that even the smallest thing could set off an explosion of discomfort and pain in my body.  I lived cautiously.

Eventually, I outgrew the severity of my allergies, although I still suffer from them today.  You would think, after all the sickness I experienced, I might be a bit of a hypochondriac.  But I’m not.  I’ve never been one of those people who got a headache and thought it was a brain tumor.  While my imagination can get the best of me in other circumstances, when it comes to sickness, I’m pretty logical.  If it walks like a duck and sounds like a duck, it’s probably a duck.

Then I got breast cancer.  And while I won’t say that my experience of sickness has drastically changed, my mind will go to dark places.  Now, when I get a headache, logically I know that it is just a headache and I need to hydrate and take two Tylenol, but a little voice inside my head whispers to me, “It has spread to your brain.”  And I know it hasn’t.  But tell that to the little voice.

In my last post, I talked about how the plague had hit our home and we all came down with a stomach virus.  While stomach viruses are generally awful, this was particularly hideous because I was only weeks post my DIEP Flap and the stress that was put on my abdominal area from vomiting was intense.  That night, I was so uncomfortable that I didn’t sleep.  If I did sleep, it was only for 15 minutes and then I would wake up and not be able to fall asleep again.

There’s something about being sick in the bowels of the dark night that makes your brain do weird things.  You see, I knew that it was a stomach virus.  My son had it just days before.  It couldn’t be anything else.  But I started to convince myself that it was more.  That maybe the cancer had spread to my stomach and I was dying.  I knew it wasn’t true.  But maybe it could be.  I started to convince myself that I was dying.

I’m a little embarrassed to admit this next part.  It’s macabre.  It’s dark.  But I like to think that I’m not the only one who has done this so, I’m looking for camaraderie here.

I started to plan my funeral.

I’ve never really thought about what kind of funeral I would want if I died.  But I was up the whole night and it’s all I thought about.  While I practice Atheism religiously, I grew up reformed Jewish.  Most of the funerals I have attended have been solemn events with tears and silence.  I’ve heard about other traditions and cultures where the recently deceased is celebrated and there’s a party.  Neither of these sounded right.

Well, let me amend that statement a little bit.  If, when I go, you want to cry for my loss, I won’t say no.  I’m a theatre person and I like a little drama.  So a well timed wail would be okay with me.  But that’s not what I envisioned for my funeral.  As a theatre person, one of my favorite things to do with the groups I work with is share stories.  So, this is what I was thinking.

After a speech by a non-denominational person (I don’t know what you’d call him/her), a video will be played.  It will be of me.  “Well, I guess if you are playing this, that means I’m dead.”  I’d go on about how much I loved everyone and wish things could be different.  But then, in true applied theatre form, I’d instruct everyone in the room to turn to someone next to them or find someone they don’t know.  I’d ask them to share a story.  Maybe a story about how we met, about a time I made them laugh, a time I made them angry, a time I surprised them, or any memory that came to mind.  I’d have them share the story.  Then, if someone wanted to share it in front of  the whole group, they could.  And then, when everyone finished what they had to say, I’d play a photo montage of all the people I have met in my short life, thanking them for being my friend, my colleague, my family.  As the pictures passed, I’d choose appropriate music (from musicals, of course, like “For Good” from Wicked) to accompany the photos.  And then, we’d say our goodbyes.

The next day, after my stomach virus had run its course, I knew I was going to live.  I felt a little silly about where my mind had gone the night before.  But it’s not the first time since my cancer diagnosis that I have wondered if my little aches and pains could be something more.  I’ve been to that dark place more than once.  My mind has gone “there.”

 

Have you had more dark thoughts since your cancer diagnosis?

Do you get scared when you have little aches and pains?  Are you more of a hypochondriac now?

 

 

 

Bits Of Happiness #21

Today I had my post-op appointment with my plastic surgeon.  He said that I am doing really well.  While I need to be careful, I can slowly start getting back to normal life.  So what is the first thing I did?

I came home and crawled into my son’s toddler bed and snuggled him for the first time in over four weeks.   We did our bedtime rituals, we kissed each other, we talked about nothing in particular until his breathing got deep and his eyes got heavy.  I stayed longer than I should have.  But these days will be gone soon and I got a taste in these past few weeks of what it’s like for our nighttime snuggles to be gone.

I think the day when my baby becomes too big and doesn’t want me to hold him until he falls asleep will break my heart.  So, until then, I will crawl into that tiny toddler bed and hold him every night.  Because I can.

Mommy Mondays (On Saturday Because the Plague Has Come)

Plague in Rome. Italy, 17th century

Don’t you feel like when you are having difficulties in your life, you should receive a “Get Out Of Jail Free” card from all the other little shit that can go wrong?  Like, if you lost your job, you shouldn’t have to get into that fender bender.  If you get cancer, you shouldn’t have to stand on every subway ride and get harassed by the crazy man.  Well, I have felt that on several occasions.  This surgery, my DIEP Flap, has been no exception.  Healing has been tough with this surgery.  I haven’t had any complications or anything.  It’s just such a big surgery (I’ve been cut in half, for God’s sakes!), I didn’t believe my surgeon when he told me how long it would take to even start feeling better again.  I should have listened to the expert.  It’s been such a long road so far, that when this past week happened to me, I couldn’t believe it!  I didn’t deserve it!  It shouldn’t have happened!

The plague hit our home!!!!!!

It started about a week and a half ago.  My son had some suspicious crusts in his eyes.  His eyes weren’t really red or anything so I just kept a close eye on it.  Maybe too close?  Anyway, what I thought might be turning into pink eye for Oliver, seemed to resolve on it’s own within a day.  Phew!

Not so fast, unlucky one!!!  Within a few days, my left eye started getting goopy.  Really goopy.  Things that shouldn’t be coming out of your eye in colors I have never seen, were coming out of my eye.  I had a bad feeling.  The next morning I woke up and my eye was completely swollen shut.  FUCK!!!!  I went to urgent care and the doctor walked in, took one look at me and said, “Oh, yeah.  I see it.”  She did her due diligence but was basically telling the nurse the prescription I needed, simultaneously.

“This is the price of having a toddler who goes to preschool,” I thought to myself.  I also thought to myself, “It could be much worse.  I could be puking.  Now that would be awful.”

It seems like the universe reads minds or something.  This past weekend, Oliver and I were staying with my parents so that they could help care for him. (To add to the list of things that are happening, Ken has a new job with new hours and new days off.)  Everything was going well.  Oliver was in a great mood.  When it was time for bed, suddenly he started saying that his belly and feet hurt.  “Nice delay tactic, kid,” I thought!  My father was snuggling him in bed and suddenly….vomit was everywhere!  I mean, everywhere!

Oh, shit!  Oh, fucking shit!!!!!!!!!  It was me, my mother and father and we could barely keep up with all of the puke!  Part of me was really distraught because this was Oliver’s first stomach bug and I couldn’t go near him to comfort him.  We were all too nervous about what would happen if I got it, so it was universally decided that I should keep my distance.  Now, no one wants to be covered in this stuff but, I’m his mother.  I’ll be covered in anything if my baby needs me.  My baby needed me.  I couldn’t be there for him.  So I cried and barely slept that night.

The next morning, Oliver was fine.  Tired mostly with little appetite but his mood was good.  The worst seemed to be over and we all felt fine.  It seemed as if we all dodged a bullet.

Can you sense some foreshadowing here?  Well, you’d be right.  On Monday night, Ken was getting ready to go to the airport to pick up my mother-in-law who was coming to stay with us and help us out.  I was feeling a little off that day but it felt like a sour stomach or gas, and I didn’t think much about it.  But, as Ken was getting ready to leave, it suddenly started getting worse.  “Should I go,” he asked?  “Yes, go.  I’ll be fine.  It’s just bad gas,” I said.  He put on his shoes.  He came back to me and told me I was leaving.  I pushed him out of the way and threw up.  I had the bug.  “I guess I’m not going anywhere,” he asked?  I was shaking.

Now, if you have never thrown up after your abdomen has been cut in two…well…all I can say is…it is a memorable experience.  I was shaking from the pain, the sickness, I was cold and feverish and achy.  I was already achy but this on top of it!!!  It was a maddening, awful feeling.  It was the last time I threw up that night but it was enough.  I couldn’t sleep all night. I couldn’t stop shaking.  It was terrible.

Meanwhile, while all of this was going on, Oliver chose this exact moment to start acting like a little asshole. (Yes, 3 year olds can be little assholes.  I love him, even when he is an asshole, and he’s not often an asshole but that night, he was a little asshole.)  He was refusing to go to bed.  He was throwing temper tantrums.  He was in his room calling, “Daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, daddy, I need a tissue, daddy, daddy, daddy, daddy, daddy, daddy, I’m not tired, daddy, daddy, daddy, daddy, daddy, daddy, I have to poop, daddy, daddy, daddy,daddy, daddy, daddy, I have to tell you something, daddy, daddy, daddy, daddy, daddy, daddy, daddy, cover my feet, daddy, daddy, daddy….”  This went on until 10:30 pm.  Meanwhile, I was in our room, “Ken, I need some water.  Ken I’m going to throw up again.  Ken, I’m cold, I need a heating pad.  Ken, I’m shaking please hold me.  Ken, my pants are hurting, I need my soft pants from the laundry bag.”

Poor, Ken.  I heard him in between our two doors, Oliver’s and mine.  I heard him stop for a moment, silence and then, “Oh. My. God.”  He had two whiny babies on his hands.

Oh, because all of this isn’t enough.  Two hours after I threw up, I started to get pink eye in my other eye.  Really.  You can’t make this shit up.

The next morning, Ken had pink eye in both eyes.  That night, he started to come down with the bug.  The following night, my mother-in-law got it.  It just didn’t stop.

This whole ordeal seemed to set me back, as far as recovery goes, about 5 days or so.  I feel like I’ve been hit by a truck.  It was really frustrating because I didn’t deserve it.  No one deserves this.  What has been so hard is that, even though I’ve had this surgery and gotten so sick, I’ve still had this little man to take care of.  And people who where supposed to be caring for me, I’ve had to help take care of them.

It’s made me think and remember that being a mom his hard, even without cancer.  But just because you have cancer, doesn’t make all of those other things go away.  Your child still gets sick and can and will get you and your whole family sick with him.  It’s not fair.  It’s not right.  It just is.  There’s no “Get Out Of Jail Free” card when your a mom with cancer.  I knew that.  I did.  But shit, shouldn’t here be?

 

P.S.  Did I mention that I woke up this morning with laryngitis?