... Because "Surviving Embryonal Rhabdomyosarcoma" has way too many syllables for a website name. :)

A Blog Site to offer perspective and inspiration to those who are faced with this disease.

Life Unravels

One of the most difficult things with being diagnosed with Cancer is the change in relationships that inevitably takes place.   In some instances, it makes them stronger… in others, it breaks them apart.   My diagnosis came at an awkward time when typically the teenager in me was yearning to be free of my parents and off to college… but I couldn’t be THAT teenager.   Like it or not, I had to be cared for.    

Today’s post has a lot to do with where I came from before things became discombobulated and how that loss of control crept into my life.   And more importantly- who would be there for me?

As a teenager, I had a pretty average existence… I wasn’t in the popular cliques at school, My GPA was 3.5.  I didn’t play sports- although I did try out for JV Soccer-once… I backed out of tryouts conceding that the pressure was not for me.

 I found my outlet- in theater.  It wasn’t until the spring of my sophomore year that I actually participated in a show.  I also enjoyed the Sculpture Art class I took- where I got to work with all sorts of materials- from wax to metal solder to bronze.  My biggest accomplishments were some Bronze Seals on a rock that I made for my sister.

My Calculus Class Senior year was lots of fun.   Not because I liked Calculus, but because in the 20 minute period prior to class, the teacher had various “thinking” games out for us to play.   There was a steady group of us who played “Go”- a Japanese game that is both like and not like Othello at the same time.  It’s much more complex.

It was during these games that I met Judy.  I’m not sure how it started- I just know that she wanted to learn the game and we played regularly.   I enjoyed it and she enjoyed it.  I think I enjoyed it because- I didn’t have to talk.  We both were in deep thought and all the better for me, because I couldn’t quite put sentences together well around girls.   We did manage having conversations- I knew that she wanted to go to school to become a pharmacist and that she liked field hockey and played it well.  These conversations weren’t very deep and we’d exchange winning/losing games.   I can say she was the first girl I had been able to just talk to… and not got nervous.  She was different.

I asked her to the prom.

She said no.

So much for my sense of “I think she likes me.”  I didn’t know what to do and nobody likes rejection.  So I withdrew from her.  It hurt and maybe I just didn’t realize that I was not someone who hung out with her outside of that 20 min prior to calculus.

Maybe it was- just a friendship.   With her, it was kind of like my whole approach to relationships in general.  I didn’t know how to do it and well, it wasn’t going to fix itself overnight.    I had made it through 4 years of High School like this- maybe college would be different.

I had applied early admission to college and while I didn’t get into the drama school- I did get accepted into the Arts & Sciences program.  I was ok with that- even though someone else in theater did get accepted to that drama program.   

Amid my busy schedule with plays & such- I had to get the physical done in the Spring Time.  I had noticed in January that my sciatica had moved from my right leg to my left leg & had become much more intense.   When I had attacks- I was laid up for days.   

I had been diagnosed back in 8th grade with a slightly exaggerated curvature of my spine- which doctors attributed to the sciatic nerve issues.   I also made an observation- that at times... well... my poop seemed flat sided.    After pushing around on my tummy, my doctor ordered an x-ray.

Then he ordered a CT scan

And an MRI

 And oh what the hey, let’s throw in a Barium Enema X-ray as well.   I’ll spare you the details but let’s just say the tech was new and things weren’t “placed” correctly.  What a mess.

All of these tests confirmed that I had a large Melon sized mass in my abdomen and pelvis.  It was pushing on my spine (hence the Sciatica changes) and on my lower intestine.  It seems that my pudgy tummy was partly due to a mass pushing all of the organs aside.  I was referred to a Surgeon and Surgery was scheduled.

The loss of control was beginning.

All of these appointments and tests came around the time that we were knee deep in rehearsals for the Spring Finale.   I’d have to miss classes, rehearsals and such.   I didn’t know much of what was going on but I knew that it was getting very hard to juggle things.  

My Co-director and I were polar opposites to begin with.  I was the comedic actor- she was the diehard dramatic actress and low and behold, she was accepted to the Drama School that I had been brushed off by.   This fact alone probably increased the tension.  She’d make changes & decisions without me there and I’d be upset at them when I found out about them.   Our Arguments became more numerous.  The Drama Teacher- who mentored us both- pulled as aside and told us to work it out and cut it out.

Now- not once in all of this- did anyone mention Cancer.   Not a bit.  It was a mass.  That’s all.  I think that in my Teenager state of mind, it was just that and it would be removed.  Done.  Finished.  

I had college to go to.  

I remember telling my teachers one by one that I’d be having surgery and seeing the expression on their faces.  I wasn’t able to show fear at that moment- I just wanted them to know & that I’d miss the last 3 weeks of school before Graduation.

Spring Finale Opened on 6/5/1986- I was 4 days away from my surgery.   I had said a few things to my friends and they were concerned.   All of them said that they’d see me in the hospital.  On the closing night- 6/7 (after doing both a matinee & evening show in one day), I attended the parties but by that time I was on a clear liquid diet. 

I was to be admitted the following day- Sunday afternoon for my Surgery bright and early Monday Morning.   Everyone who I said goodnight to, wished me luck & promised they’d check up and see how I was doing later in the week at the Hospital.

The day before surgery is rather a blur but I do remember everything was new… I had never been hospitalized before.   And wow, these people taking care of me seem nice.   This seems ok.   I’ll get the surgery done and then continue making plans for college in the fall.   At bedtime, the nurse came in and asked if I’d like anything for sleep- I declined.  I wasn’t anxious.

The following morning- I’m awake… and the gurney arrives to wheel me down to the O.R…. My parents are not there.   I am alone.  I got in the gurney but it finally caught up to me at that moment.  I was alone… and I was having surgery… and I wanted my Mom & Dad…. I was crying.  The hospital staff was very good but they were not my parents… No amount of comfort from them was going to come close to getting comfort from my parents.   I did my best to conceal the tears but they were flowing faster.

We got to the elevator and emerging from the regular elevators were Mom & Pop.   My Mom tried to sooth me and let me know that they’d see me when I woke up.  I can’t speak for them but I’m sure it tore them up inside as well.  They were trying to keep the strong face and stability that Parents are supposed to bring to their children.

I could write an entire blog about my observations on Operating Rooms but I think my most succinct comment is “They’re frickin cold.”

After surgery- I woke up in post-op.. Still cold... shivering cold…. And I was introduced to my first warm & heated Blanket.  Sweet Jesus there is nothing better than a nice Warm Blanket when you’re lying there in a gown and the opening in back is open just a tad too much.  And no matter how hard I try I can’t make it feel like it’s closed.    The warm blanket is amazing… I think I asked for 3 or 4 and I got them…

My physical recovery from that surgery was rather uneventful; however there were a few things of note.

I found that my mind could play tricks on me. 

My surgeon’s daily visits (usually at 6am) was when I could hear from him how he felt things went.    What I thought I heard was that the surgery went well and that he was able to remove some of the tumor…  What actually happened was that he was unable to do much of anything- other than examine the tumor and take biopsies. 

I guess I wanted to believe that everything was over & now it was just a simple recovery.  It freaked out my family a bit when I talked about the tumor being removed or partially removed.  But with time, I learned the true story.  

The tumor was pushing organs aside just as the pre-surgery scans had shown but it was wrapped & involved with important blood vessels & nerves- especially to my right leg.   One thing was clear- he didn’t know what it was and samples had to be sent outside so we could get a definitive diagnosis.  The good news was that it didn’t appear to be attaching itself to any major organs.

Another public service announcement I’d like to make is to not call anyone in their hospital room on the day of surgery.   Mostly because by that time, the patient hasn’t figured out how to find the ringer volume switch and because most likely- the phone is right beside his ear tangled amongst his nurse call bell.   I speak from experience.

With all this being said- I did get that very phone call only a few hours after returning from surgery in my hospital room.   Mind you, I was heavily doped up on anesthesia & pain medication.   The phone’s ring scared the crap outta me but I answered it:

A young girl’s voice says                “Yes, hi, I’m trying to find out the condition of a patient at your hospital named Robert Sawyer?”

In my groggy somewhat slurred frog sounding voice I ask “who IS this?”

“Oh, my name is Debbie- I’m a friend of his from High School.  We were wondering if- “

“Debbie… this IS Bob”

“OH MY GOD, I’M Soooooooooooooo Sorry”

“No, no... It’s ok... but I just got outta surgery and I’m kind of tired”

“Oh MY GOD, I’m sorry, I didn’t mean to…”

“It’s ok… but I have to sleep now.”

Now- Debbie did not call my room directly.  As I later found out the hospital operator transferred her to me when she asked to find out the condition of Robert Sawyer.   Who would know better how a patient is doing than the patient himself?

Debbie & the gang from theater did stop by but gradually the attention waned.  People would stop by- a few of them almost daily but I had knack for getting pain shots at the times when people wanted to stop by and chat.   And the Demerol did not make me “Chatty”... it zonked me out.

It was one of these afternoons- after surgery and still in the hospital that I lay in bed dozing from my latest pain med dose.  I detected that someone was in the room- moving things around and such.  I opened my eyes and saw a small “Go” board on the bedside table and Judy was there setting things up.   She smiled and I gushed in a somewhat drugged response “Heyyyyy, how ya doin?” 

The fact that she was even in this room with me REALLY surprised me- especially since I had all but removed myself from talking with her for the past several months.   We enjoyed several rounds of the game and I shared with her how little I knew of what was going on and what would happen next.

This surgery was the big first step in the unraveling of my once planned life.  It showed me who my friends were and it showed me that some people could look past my flaws and still want to slug it out on a Go game board. 

I remember that I decided to send Judy a very special thank you letter for showing up at the hospital and to let her know that I realized I hadn’t been the best of people in the past several months.   I wanted her to know that I truly appreciated that visit and that I would never forget her.   But I knew- as everyone knows at the end of high school- people part ways and go on with their lives.   I knew that she was headed in the direction she wanted and that I had a future which was much cloudier.    I only bumped into her a few more times at the local pharmacy during the summers.   

As I was to figure out over the summer- my nest of friends would diminish.   By the end of summer there were three that I kept in touch with- regularly.  And this continued for the following years.   These are the friends- who just called to find out how I was doing invite me to Chinese Food & a movie.   These are the friends that mattered most because all they did- was treat me like a normal human being.

Note- this was originally posted on 1/29/2011 at http://www.rhabdomyosarcomainfo.com

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