Rhabdobobbo!

... 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.

Fitting in

It had finally arrived… Late August 1987.   It was time for me to go to college. 

I had spent the past year being lost in crowds and requiring little interaction.   College would challenge this pattern.  To people I met, I was quiet and well, bald.  

My college ID, had my big head… smiling.. like every other college student- only it was missing every piece of hair that should normally be there (with the exception of some straggler hairs that hung on on the eye brows and behind the ears.  But they were sparse.  My assumptions were that people would figure out I was sick because- I looked the part.  Sparse hair, pale complexion- a bald 20 year old was just not a normal occurrence in nature.

On Freshmen Check-in Day this “freak of nature” got his picture snapped by a local photographer (yep it showed in the city Newspaper too):

Mein1987crop.jpg

Nowadays, I chuckle at this picture because my expression is one of “what the )#(*%&#( are you taking a picture of me on my trunk for?”  I guess my initial take was that he saw me as an oddity to take a picture of.   But, looking at this photo- I just look like another kid checking in with my small trunk of stuff.  

A few weeks earlier, I had called my new roommate  and introduced myself to David who was from Florida.  I was relieved when I heard that he was a Sophomore and not another freshman.  At least he will be someone who’s gotten through the first year of college & is now focusing on studies.   I also did tell him that I was a cancer patient and that I was still getting chemo.   I assured him it didn’t mean anything more from him but I did ask that when he knew I was recovering from a treatment, it would be nice to keep things kinda quiet.  I didn’t want any loud parties in the room at that point.   As we talked, I found that he was a musician and enjoyed playing in his band.  He seemed pretty relaxed.  Not completely stoned mind you, but someone who sorta went with the flow of life. 

With my Dad’s help, I got my stuff up to my room.  I had secured a nice double room which had a divider with closets in it going down the middle of the room.   It was a pretty nice set up for a college room and allowed each roommate some level of privacy.    My Dad insured everything was ok and I said I was good & ready.  We said goodbye and I was on my own.

The first few days were full of orientation events and “mixers.”   I did my best to fit in but found myself grabbing a hamburger or hotdog and then quietly munching under a tree.   I can’t say I had the best social skills to begin with and I didn’t really want to discuss why I was bald.  To that end, I had my collection of hats- not baseball caps… hats.   The one in the above photo was one of my favorites in the summer.  

Then came the first few trips to the dining hall.  At first there were a few guys I’d go with… then maybe 2 or 3… then I just went and ate quietly by myself.    I also quickly realized that the meal plan which includes weekday breakfast was highly over-rated.   I tried to make it to breakfast but, as the weather got colder… I just got more accustomed to having some cereal & milk in my room.  Lunch was spent by myself usually- reading the student newspaper in the dining hall.. and Dinner… I tried going at different times… but found nobody to eat with so again- by myself.     Now I was thick skinned, but I do think it began to nag on my conscience.  Why wasn’t I interacting?  I wanted a normal life and this is it?  A plate of pork chops, peas & a small garden salad?  

On Friday & Saturday nights- the floor would pretty much empty out with everyone trying to go to parties or get some beer.  I had consciously decided to avoid having any alcohol at all- I had enough drugs running through me already and didn’t need another one.  I and a few others stuck around watching tv some nights but most times, I stayed in my room.   I remember seeing one guy come back to the floor around 10pm or so and the elevator doors would open.  One step- maybe two, before falling flat on his face passed out.   Some people went to pick him up & take him to his bed.  With the common exclamations “put a bowl near his bed” and “make sure he’s sleeping on his side.”

I frequently went to bed early and one night, I had to run to the bathroom but didn't want to get all my clothes back on.  I threw on a pair of shorts and proceeded to walk in sneakers, shorts & shirtless to the bathroom.  A group of guys & girls were coming down the hallway as I shuffled quietly towards them (but around the corner).  They came around the corner and the two women screamed as we almost bumped into each other.   Then after I had passed them and was about to enter the bathroom- they burst into laughter.    I was immediately shaken, angry, sad, & frustrated all at once.   How could they do that?  What do they know?   What do they think I am, a freak?  They are assholes!

However, these angry feelings- they weren’t verbalized.  I kept them to myself which was not a good thing.   I needed someone to talk with and help me sort things through.   So I signed up with a counselor (aka Psych doc) at the Student Health.  I went in with my sadness, anger and frustration at not fitting in and what I got back was “So what?”   Unlike being someone to listen to me vent… I think he wanted me to get a grip and get over it.   After 2 or 3 visits with me getting in a bit of an argument with him on what he was not doing for me… I realized that help wasn’t going to come from him.    Maybe that was his point; that I had to stop blaming others and move on.  He just had a rather confrontational way of presenting it.   I was going to have to work on my social interactions by myself.

The interactions I had- were ones that I had to have.   I had met with each of my professors to explain to them that there may be times that I miss class due to treatment but that I’d appreciate flexibility.    All of them were willing to help me in any way they could.  I also met my Residence Director and assured him that I could take care of things.  I’d let him know if I needed help.   I contacted woman who was the in office for disabled students.  I’m pretty sure it had a more snazzier name than that but in any event, she guided me on the requirements of making accommodations for people with disabilities.

Now the mere thought of calling myself “disabled” was not something that had crossed my mind up to that point.   This was the beginning of my re-education on what “disabled” meant.   The cancer itself was not a disability.  The side-effects created disability or in more flowery terms “an inability or limitation of one or more basic human functions.”   Chemo’s disabling side-effect would be fatigue or loss of appetite- hardly things that I felt limited me.     Does being labeled “disabled” make me any less capable in people’s eyes?

It was one person at the dining hall who helped me change my understaning of how people saw me.  I was perusing the selections of entrees and one of the servers asked “Are you on the swim team?” 

This caught me totally off guard.  I had always assumed that people would see me and my bald head as someone who is sick.

I smiled and said “No… I’m not on the swim team.”

“Oh so you’re pledging a fraternity then?” came her quick follow-up question.  

My response was “It’s a long story” and I left it at that.  

However, her questions boosted my awareness one level.  Maybe people were viewing me as “Just another student.”   Maybe they weren’t making the connections that I already knew.   Maybe I was fitting in more than I thought I was. 

I was fitting in and juggling a medical condition.  The original doctor I had seen back before arriving at school had left the practice.  I began my appointments with the physician who inherited my case at a local hospital nearby.  He understood chemo and the side effects very well and even though his specialty was hematology/internal medicine, he could understand what I had and where I was at.   Weekly blood tests were a must.  And the nice deal was that campus, the hospital and my dorm were all within walking distance of each other. 

For Chemo I actually asked him if there was any way to do it overnight at the hospital.   No.

But I could do it as an outpatient and in my brilliant stroke of thinking- I said- hey I could rest at the beds in the Student Health Center.  And the Student Health Center said Yes!  I just had my doctor pass along the information about keeping me hydrated- I’d get the chemo and rest at the outpatient clinic for a bit and then I’d go over to the Student Health Center to sleep it off.

But these days, Chemo didn’t knock me for a loop like it used to and I recovered quickly.   What was the rest of college life going to be?  It isn’t just about classes.

So to pick myself up, I had my friend Adam who was at a nearby school bugging me to get on a bus & take a trip for a weekend.    While my budget was tight, I decided that I needed to do it.  He was living in a coed fraternity and it had pretty nice accommodations.  Except for the one roommate who always had his shoes out on the roof because everyone thought they smelled really bad.  It was fun to see how another campus was.   He even had a graveyard shift radio show on the university radio station.    I didn’t think I could ever pull an all-nighter but I joined him for a few hours- reading the news and threatening to play Bobby Vinton’s “Blue Velvet” if we didn’t get any callers.

Once I returned back to my campus- life outside of classes included the late night snack bar runs for French fries and/or a burger.   It also meant calling friends from high school & seeing how they’re doing.  I even called Robin (of Splashy Dame’s Fame).  Totally out of the Blue- just to say “hi”…  Through her school’s main phone#, I had found out her phone#.   Her roommate answered the phone & I asked “is Robin there”… There was a muffled pause and then a “who’s calling please?” and I said “Bob Sawyer” to which I heard a very surprised Robin blurt “WHAT?” in the background..  Her roommate chuckled and said “hold on a sec.”     It made me feel good that I could surprise someone like that.   We had a nice discussion on college & how I was doing.   I tried to share what I was doing outside of classes even though it was a small amount of activity.

One of my freshman follies was being part of a University Television TV show called “Life Behind the Eight Ball”- it was supposed to be a talk show/variety show with David Letterman-esque influences.   Ok let’s face it, it was college kids having fun goofing around on TV.    I did mostly behind the scenes stuff- running the Chiron on a Commodore Amiga PC that looked like it had been drop kicked through a frat party.   I’ve never found copies of the videos from that tv show- there is one in particular that I was in where we were arguing about topics for the show & the camera pans right to find me glaring at the bonehead in the middle who keeps contradicting everything everyone says.   I’m pretty sure my shiny head threw off the white-balancing on a few of our cameras.

Amid all this activity- mind you it was only the first 2 months- my appointments and check-ups had continued without problem.

It was a week before Halloween when my Hematologist told me that there was some troubling indicators in my blood work.  I had a full battery of tests- including heart tests, a colonoscopy, & several nuclear kidney tests (where they watch radioactive dye get filtered through my kidneys).

My emerging problems were ureters that were scarring shut and impairing kidney function.  The bleeding in my bladder (which had been referred to as Hemmoragic Cystitis) seemed to be increasing a bit.  Both of these items were termed as late side effects to radiation.

Just when I had made some steps to interact, to be independent, to challenge my own misconceptions on disability- my own health began to falter.   I was only Two Months into college!  This news hit me hard and I spent many nights crying myself to sleep. 

What was I going to do?  Could I continue this endeavor to be at college full time?  How was I going to do that?  How was I going to continue fitting in?

Yep- you guessed it, I’m leaving you with a cliffhanger… Good news is that this original posting was going to be about the entire first semester.   I decided to split it in two.    Stay tuned!

Powered by Squarespace. Background image by Flickr user 5chw4r7z.

All Blog Material Copyright 2013- Bob Sawyer