... 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.


So there I was starting Radiation in the summer of 1986.   I had not lost my hair yet from the my first chemo which had taken place only a week earlier.   I was determined to keep myself busy and hadn’t really thought about the hair loss thing.  I hadn’t really thought about my sense of self, who I was and how I thought I looked.  

The summer of 1986 had a huge influence on who I am today.   I became extremely independent- Less likely to ask for help and more likely to do it myself by any means necessary.    How I got to this self-reliant stance unfolded rather quickly over the next couple of summer months.

I’m not sure of the exact point during my first round of radiation treatment when I woke up and looked at my pillow.  There was hair on it… more hair than normal… I quickly looked up at the mirror and saw that I still had hair- no patches yet… but this was a sign things were changing.

So I was faced with the conundrum that every cancer survivor faces… What do I put on my head?   I knew what I did not want… I did not want a baseball cap.   All the cancer patients I had ever seen always had some sorta baseball cap on.  I didn’t want to be one of the herd with an ill-fitting baseball cap on my head.   No- I needed something different.

So for me- I convinced my Mom to get a nice summer hat- white.  Of the style they wore back in the 40’s & 50’s.  It was nice and in my head I felt it made me look “less identifiable” as a cancer patient on treatment.

I also convinced my Mom to get me some t-shirts one of which I still have today .   It has a simple phrase on the front “I’m on a seafood diet, I see food and I eat it.”  This was my own little reminder that my oncologist kept telling me to make sure I keep eating.

Another thing that changed that summer was my growing independence.

 My mom followed me in to Radiation for the first few sessions.  I realized that I felt ok doing this myself and that I could get myself two/from treatment & that Dad would only have to drop me off & pick me up at the train station.  I would use one of the 25 cent 30-second phone call phones from Grand Central to call my parents & tell them what train I was on. 

During my radiation treatments I was referred to a Social Worker who I would meet with regularly and talk about how I was feeling & what was going on.   This was a new thing for me.   Sitting down with a stranger and sharing details about treatment, my fears, my hopes etc… I think in some respects I needed this outlet.  

She always had a knack for bringing me back to reality- to really think about the future, about my family and the emotions they stirred up.    Even at this point- my future was College and it had only been post-poned for 6 months- I would go in January.  But it still irked me when my parents would bicker about it and every three weeks like clockwork (right before chemo) I was depressed about having cancer and bawling my eyes out. 

In my family- warm-fuzzy emotion sharing wasn’t the norm.  It was one extreme or the other.  It’s not to say we didn’t laugh together- we did.   But the sharing & seeking advice from parents on emotional issues, was not something I did.   Sure I’d tell them when someone was picking on me at school- but I never talked to them about my social life or the girls I had crushes on or the ones I had crushes on that despised me. 

So it was in this environment that my social worker became my emotional dumping ground.

But there were other changes going on that were harder for me to understand.   As my hair fell out, I began to recognize that I looked and felt different.  I became aware of people who would do double takes or get caught staring at me from across a diner.   I mean let’s face it… my hair fell out… and my blood counts dropped… That made for one very pale looking young man snarfing down an order of scrambled eggs & toast. 

So while in between treatments during the day I was on my own.  I chose things to do that could get me lost in a crowd and with time I became de-sensitized of the people staring here and there.   My most favorite retreat was a movie.. the 12noon matinee.    In a completely dark room in a room with others who were happy to go see a movie and I could inhale a soda and some popcorn. 

Between movies & exploring around the hospital, My first two weeks of Radiation passed pretty quickly and left me with plummeting blood counts and a sunburn in places I’d rather not have a sunburn. I’ll say again- my radiation covered my pelvis and a good part of my abdomen.  And it was from both sides.   A sunburn on one’s tuckus is no freakin fun.   ‘Nuff said.

I was scheduled to get a CT Scan & an MRI to check what had happened to the tumor.  My oncologist was always stating that this first scans would be the most important.  It would tell us how much the treatment was working. 

The tumor had shrunk about 50%.    This would be fantastic news.  But my oncologist with the communication issues pointed out this was not as much as he was hoping & he was concerned.  He ordered chest x-rays (rhabdo spreads to the lungs normally), they were negative.   He said treatment must press onward.  Not once did he say “Hey it’s really great the tumor shrunk so much” (or anything close to that).

The next chemo treatment took place- around the beginning of August.  Then I was off to re-simulate again.  A new set of tattoos to help re-aim the 2nd round of radiation.

Now- I think my insides became acutely aware of what Radiation was- and this second round of radiation had some more challenges for me.   Especially in the intestinal department.  I still tried to have my 2nd breakfasts but I found myself having to go to the bathroom frequently.   This hindered my ability to sit through movies and such.   The sunburns were also much much worse this time and I had to use several lotions just to keep them cool… Skin peeling was happening anywhere the radiation had hit.

But as challenging as this 2nd round of radiation was- it was a shorter timeframe.. about a week and a half.   My body recovered enough and again- I resumed chemo.  I was supposed to be on a 3 week schedule however at the third week- like clock-work my blood counts would be barely creeping up from rock bottom they hit about a week earlier.    Treatment was routinely postponed one week.

September arrived with my friends off to college and me stuck at home- I did try, reluctantly, to find some part time work.  I had never had a summer job in the town I lived in… The only thing I could point to was 3 seasons of blueberry raking in Maine.  Good Money.  Grueling work.

Here again, I was confronted with reactions I had not dealt with before.

I mean, I felt well enough to be working and I had no problems sharing that I was under  treatment for a cancer.  I wasn’t asking for a full time job.. just a part time one.  Someplace… the cheese shop, the candy store…  I’d fill out applications and nothing would materialize.  I began to notice patterns with their lines of questioning- How often are you at the doctor’s?  Or What type of work have you done before?   Suddenly- getting my first part time job had a “worked before” requirement.   And these were simple jobs- cashiers and such. 

Perhaps in my first time job seeking I shared- too much.  I had grown accustomed to telling people about things that were going on with my health.  After all- since June- that was my life.  Most everyone I saw during the day was a physician, nurse, or technician who was willing to listen.   I had somehow missed that magic gap between healthcare and everywhere else.  

I ended up volunteering at the American Cancer Society a lot.   Stuffing envelopes or doing simple data entry.    They didn’t care that I was missing my hair.  They needed help and were eager to accept it.   I also did some part time work for a neighbor who was an attorney.   Not great money- but it got me outta the house.. and I got to drive a nice car between the two attorney offices.  Nice Perk!

So here I was- changed.  Every Morning  Standing in front of the mirror- very bald.. with a large foot long scar going from my sternum down (which made my belly button kinda funky lookin).  In my room I was with myself & my thoughts.  Out there, I had to grow a slightly thicker skin in dealing with people’s reactions- at least they weren’t pointing and laughing or shrieking in horror. 

My plans- were to get to college but first… I would have to see the surgeon one more time… and I’ll save that one- for my next blog!

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