... 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.


New Years came quietly and 1987 started with me in a happy place.   While I had been forced to postpone college again for one more semester, everyone including my not so tactful oncologist agreed that I should be able to start school in the fall.   

But First- I had to resume Chemo.

I guess I was a bit surprised at how quickly he wanted to resume it.  It was on 3 weeks after surgery.  In addition, I wanted something more concrete than “starting chemo.”   I wanted to know where the end was.  I pressed him on how much more is enough?   He didn’t have an answer.   He said the surgery did confirm that I still had active tumor cells in there & while the radiation pellets did their job- the chemo would supplement the work. 

I had grown into a honeymoon of sorts being off chemo.   I still felt tired but it was so nice to not have to have the regular treatments.   But this January 1987 dose was a tough one too- probably because I had been off chemo since November.  I remember after this dose in particular, as I threw up into a bowl that my mother held, I declared in no uncertain terms that my oncologist was a “fucking asshole”…  I wasn’t one to curse in front of my parents much but my Mom was probably a wee bit surprised hearing her son talk in such a manner.   Despite my throwing up, even my Mom tried to hold back a giggle while saying “yes he is.”

This defined my “doctor-patient” relationship with my oncologist.  I’ve heard of many people who love their doctors and what they do for them.   I can’t say that I loved mine.  It was a marriage of convenience.   I being the sick one needed his expertise as the doctor.  But that’s all I needed.  I didn’t need to hang out and chat- I wasn’t going to spill my life story to him.   I wasn’t looking to him as my emotional rock of support.   I guess it’s hard to develop any sort of functional bond with a person who makes you throw up every 3-4 weeks. 

The emotional support I needed came from two opposing forces.   One, my weekly conversations with my social worker as an “emotional dumping ground.” And Two, my parents- especially my Dad, getting annoyed and insisting that I need to do something with class work.  Yes, My Dad getting annoyed with me was emotional support- it may sound odd but that’s how it was.  Through the fall, I had enjoyed a lot of doing nothing but leave it to my Dad to bluntly tell me to get moving.   He didn’t appreciate me lying around the house all day and watching so much tv.  My argument was “what could I do”- I’d tried finding work- it didn’t work out.  Nobody wanted to hire someone going through chemotherapy.

But my Dad’s focus wasn’t on work.  It was keeping my mind sharp.   Why couldn’t I take some classes? 

It took me a while to come around to accepting that he was right but I found some courses at a local state college campus.

So I signed up for 3 classes.  A French class, a computer class (on BASIC programming), and an acting & improvisation workshop.   None of them were particularly challenging.    I think they were more about having fun and keeping myself busy.  I actually earned 3 credits for the computer class but didn’t really understand or appreciate what that meant. 

However, the acting/improvisation workshop was a nice release.

It was always helpful at the start of the class for us to do a relaxation exercise where for 30 – 45 minutes we would do various visualization & deep breathing exercises.    Then the fun began with various improvisation exercises that always got people laughing.  But I think this class had a subtle confidence building effect on me.

I was interacting with people.  Not talking about cancer.  We were laughing together and it made me feel good.  For the first time since the end of high school, I felt like one that I was part of a crowd and not just in a crowd.  This class became one that I really looked forward to.  No matter how drained I felt- I always wanted to make it to there so that I could feel normal amongst people again. 

The Spring of 1987 had a regular rhythm that I settled into.  No extreme highs.  No unbearably low lows.  I definitely continued growing my confidence on how I was handling treatment.  

In this manner, I developed a bit of a chip on my shoulder.  I had accepted that fact that nobody but me and other cancer patients understood what it felt like.   I mean, really understand what it felt like- covering all the emotions & symptoms that are an anchor to ones motivation during treatment.    In years later, during cancer support discussions with others, I came to label this as “fattitude.” It wasn’t just that I was a Survivor… I was a Survivor, dammit!   Being an upfront advocate of my care… and maybe a little “fucking attitude” to boot. 

So with this gradual growth in confidence & managing my care.   I also had to deal with the minor ripples of the regular exams which were less about finding out what was wrong but more about “is everything still ok?”

I waltzed in and out of my Spring Heart Test with little a thought as to why and more like I was following a routine.  This test was nuclear medicine exam they did which watched my heart pumping under stress.

The Adriamyacin has begun damaging my heart.  The heart did fine at rest but the damage could be seen under stress.  

This damage was something my oncologist had expected.   He had emphasized ad-nauseum that it was a common side effect for the dosage I was getting.   However, I didn’t feel like I had a heart problem.  No dizziness, no feinting, no being out of breath.    And I was reminded that it could always get better.   I would just have to keep up with my exercise.    From this point forward, my dosing for the Adriamycin was lowered- but not eliminated.

The more anxiety ridden tests were the repeat CT Scans, which got increasingly hard to read with the amount of scarring I had.   It led to the remark on one report indicating it was hard to tell where the tumor ended & scarring began.  I had a lump there for sure- but all of the seeds had done their job & contracted close together.   We couldn’t tell which tissue was scarring & which was viable tumor.

I also had little things start happening which were more annoyances but attributed to long term side effects of radiation and/or chemo.   Bleeding.  Both from my bladder & from my lower intestine.  Not a lot at first and it was rather intermittent.    I wasn’t getting too anemic & my blood counts rebounded nicely in time for my next chemo dose. 

Summer arrived.   Things were looking stable.   I still had no answer on when chemo would stop and the minor side effects weren’t limiting me from doing things too much.

That was until- I finally developed the mouth sores.  This was a side effect that happens in some people and it is none to pleasant.  You see, the inside of your mouth... and throat.. continually produce cells to replenish themselves.  The chemo I was having- started to interfere with that so that I would get sore areas on the inside of my cheeks and down my throat.    The sore areas were an indicator of the chemo interferring with the ability of my gums & cheeks to replenish themselves.   So while stopping cell division is great for stopping cancer- it ain't so hot when it hurts so much you can't eat. 

The sores lasted 4-5 days.  I was miserable and my eating took a big hit.   Soft foods- bland liquids... Nothing acidic if possible.  and no sweets.   That really sucked.  Especially for my penchant for all things chocolate.

Even with this rather unpleasant side effect, I tried to keep busy.

I was excited to participate in the Freshman Summer orientation weekend for college.  At the same time,  I also had a chance to revisit my doctor near my college- only to find out that he was leaving the practice & going to work in Boston.   He referred me to his practice partner and felt that he would be able to handle my case just fine.  He was a hematologist/oncologist.    And the troll oncologist that I had been seeing since June of 1986 was ok with this change.  In fact he thought it was very good. 

Then came the fun part.  I got assigned a roommate & residence hall.  I knew that the person I was going to room with was a sophomore and I had his phone# so I called him to introduce myself.  I never said what year I was but I did tell him that I was undergoing treatment for cancer diagnosed in the previous summer.   He explained that he was musician, he played keyboards in a band and kept a pretty busy schedule.   I wanted to understand if he was a “party all the time” person or if he’d understand that at some times, I may not be the most sociable because of how I felt.    He seemed ok with everything.  And I found myself re-reading the “guide to getting a new roommate” in the orientation materials I had.    Why was it so simple in the phone call?  What did I miss?  Was there some other question I was supposed to ask?  A musician?   At what hour?

Even with these questions- I was eager to get to school.  Finally, some true independence away from the family.

Me and my Fattitude were going to splash down in college feet first.   It was actually happening, I was going to go to college!   My rebound which began that foggy hour after that surgery in December, was soaring.   I was not just on treatment… I was living!

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

All Blog Material Copyright 2013- Bob Sawyer