... 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.

The Tools to move forward

The combination of graduating High School & Being diagnosed with cancer was like a double wammy to my social life.   Not that I had an extensive one but I went from being very busy every day after school to nothing within 10 days of the end of high school.  

So today’s post draws on two essays I’ve written previously.  It tries to address two things:  1) Coping  and 2) Inspiration.    

“Coping is Right in front of you”
For some people, Cancer can be a very lonely experience.  Their peers withdraw and they're not quite sure how to interact with this individual.   But there are things some people do- the smallest gestures that take on great importance.  I mean you can see the person sitting quietly by themselves- bald with a few stubborn hairs along what used to be his normal hair line.  He sits and picks through the food he cannot taste and then suddenly, he smiles.  And there, just for that instant, the man seems normal, like nothing was wrong.   Why’d he smile?  Because, his friend just sat down next to him and cracked a joke. 

I had several friends who brought smiles to my face after the first surgery.  There were the “Really Splashy Dames” (they signed my yearbook that way).  The name of the group was developed from the first letters of their first names- Robin, Stephanie & Debbie.    All three were in Theatre Company with me and yes, Debbie is the same Debbie mentioned in this previous blog entry.  They were inspired by the flowers they brought me in the hospital of which none of them knew the proper name of the flower.  So they called them- “Splashy”.. because that’s what they looked like.  They’re laughter over this was a good release to have in the hospital.

My friends Adam & Bob both sought me out over the summer- again to get me out of the house and doing something.  Sometimes it was to laugh at a movie or talk about looking forward to college.  Other times it was a nice multi-course meal at a local favorite Chinese food place.

Then there was Tony.  Both of us had been in classes together- from French where he sat behind me asking for the translation… to calculus where at one inspired moment, I tried to pull one of my multiple notebooks out from the bottom of a pile of notebooks- and sent the notebook flying nearly decapitating a guy named Todd. 

The irony of that moment being that I was in a musical at the time where one of the lines from a song I sang was “Second thoughts about a creep named Todd.” (and yes, Todd was in the same musical too).  Robin, who was also in the class- thought for a moment that I had a fit of anger.  And Tony?  Well he basically had a hard time composing himself for the rest of the class as he kept giggling.

It became customary during that summer for Tony to check in on me and see how I was doing.  He’d invite me to go do things- be it a movie, a dinner with his family or to drive around with his other friends until we end up at his favorite golf course at 10:30pm at night so he can try to putt a hole in one in the pitch black.  Tony was always willing to take chances.  Me- I was the one saying “oh no, I can’t do that.” 

The end of summer came quickly and while I was approaching my second round of radiation- Tony was getting ready to go off to school.   For his send-off to college gift- I gave him a beer mug.  I knew he’d use it.   And on it, I put the phrase “Stupid, Stupid, Stupid” which was what I always uttered when he was recounting what mayhem he had gotten into over the weekend.    As if to remind him- every time he took a drink- he was getting just that.

Now I’m not saying that jokes are the end all be all solution to getting through cancer.  They help but there’s something more.   That something more is exactly what Tony and other people like him were doing.  Get me out of the house.  Go to a movie... bring me cake… Whatever was normal- still was.   Life continues and even the simplest of activities got me away from thinking or talking about cancer.

I didn’t want to talk about cancer all the time and it was nice that my friends had the ability to just let me be me.    They did learn more as treatment progressed- maybe more than they wanted but I liked the fact that I could share what I wanted, when I felt I was ready.

So these were my friends that I knew and who helped me cope… but who did I draw on to help me develop the “attitude” for survival?   Is there such a thing?

“Inspiration is right beside you”
On my first visit to the oncologist’s office, there was a tall gentleman there talking with his wife.  He introduced himself as “Larry” and quickly explained the doctor was great.  The Doctor had done wonders for Larry when no one else could and he was fit as a fiddle.  He also said- “Keep active, whatever it is, physically, mentally… don’t sit down and wait for things to happen.”  

Larry had a great sense of humor and energy that was addicting.   Over the weeks and Months as my treatment progressed, Larry and his wife Jackie and I would have great conversations about how things were going.   They would encourage me to keep up my jogging (which I began reluctantly) and they also said I needed things to escape with.  For Larry that meant writing plays and such.  Both he and Jackie worked in Theatre and me having just graduated high school and enjoying theatre so much enjoyed talking with them.

My appointments were weekly and I kept them posted on my college plans which they were all for.  I was going to go to college and get my treatment while at school.   I don’t think I would have done this had Larry not been there to say- see look what I’m doing?  I’m running, I’m living a normal life... so can you!  

A year passed and I made all the necessary arrangements and off to college I went- one year late but I was going to school darn-it... Larry who was doing well and Jackie wished me good luck and said they’d see me when I had follow-ups on vacation times.

The Thanksgiving holiday arrived during the fall of my freshman year at college and I had my checkup the day after thanksgiving.  I came in and being a holiday, the office was quite empty.  So I sat and waited.

Now all through the prior year I had seen some pretty sick folks come in and out of that waiting room.  So it never surprised me when I saw one.  A man arrived who had lost a lot of his hair and weight.  He was very jaundiced and basically skin and bones.  I’d seen people like this before and I didn’t think it would be appropriate for me to jump up and down and say “keep moving” like Larry did. 

This man was not doing well.    The man asked how I was doing in a very weak voice.  I said “pretty well, going to school” but I sure as heck wasn’t going to ask him “how are you doing?”  He knew it already.  The man said “he’s a great doctor…” referring to my oncologist and I nodded yes.  At that point I was called in to see the doctor.  

By the time I was finished with my check-up, the man had moved into one of the treatment rooms & I gathered my stuff and left.

As I left I heard a voice- it was familiar.  I couldn’t place it.  But then I stopped in my tracks and realized it was Jackie…. And that man was Larry… I was stunned and didn’t know what to do or say.   Should I say hi?  I couldn’t bring myself to it and I continued walking- probably out of fear and being reminded of this illness’s cruel ways.  It was clear that Larry wasn’t going to make it. 

Some years later I was part of a Support group and met a woman whose husband had been treated by the same doctor and who I had met a few times in the office when I went there.  She said she had developed a nice relationship with Jackie.  I got Jackie’s address and phone# and called her.  We chatted about Larry and what happened. 

As it turned out, Larry died 3 days after I saw him.  He had done amazingly well for someone with pancreatic cancer that had spread to the liver and Jackie did miss him.   The conversation didn’t stop there… I then started something that I’ve done every year since then.   I sent Jackie a Christmas card to let her know how I’m doing & to find out how she’s doing.   She says she loves the cards and is so happy to see I’ve done well.    She’s kept active in theatre and doing some commercials as well.

Keeping in touch with Jackie and remembering how someone like Larry helped me challenge the assumption that you’re supposed to “act sick” while on chemo- is something I’m proud of.   Larry put things in perspective for me and helped me see that life is still going on all around me- I just had to learn to seize it. 

I don’t think any of us can plan how to react when you are confronted like I was with a rapid change in someone’s health.  How do you approach them?  Do you approach them?   I’m not infallible- my defensive wall went up because I didn’t want to acknowledge the possibility of failure.    I’d like to think in some small way I’ve corrected that mistake of walking away and in my own way I’ve given Jackie a simple acknowledgement of how important her and her husband are to my motivation today.

“And with Both you take steps forward”
I started today’s blog outlining that I would cover Coping & Inspiration.   They are two different sides of the same coin.   While someone can cope with an illness, they need inspiration to keep moving forward.   Coping & Inspiration can have very different sources and there is no steadfast rule on what is the right method to cope or the right method to be inspired.

That Summer of 1986 should have been about transitioning into an independent adult by going to college but instead it was more about learning to live.  I needed the friends to help me forget for a bit.  To laugh.  To go out and do things.  I didn’t have to sit around and watch everything happen around me.

Larry didn’t want to sit and watch either and even though my course of treatment and his course of treatment were very different, I still see the value in meeting and learning from someone like him.  Some people may feel that dying of this disease means that all was lost.   I disagree.   A death is not a failure.  People can die of the disease and still inspire others to do great things.  Larry was and still is the one person I can point to & say that he provided me with the impetus to tackle changes in health, self-image & cancer survival. 

By having that inspiration to move forward, I was better able to enjoy my coping skills- especially if they included doing the simple day to day things (like a great Chinese Buffet).  My friends were the conduit to make me see life as life and not anything more complex than that.   Just because I was on treatment didn't mean that I stopped interacting with the world.   I would have to interact and savor all the little things that life brought me.   I would not keep still- I had to keep going.


This Blog entry originally posted 4/6/2011 at http://www.rhabdomyosarcomainfo.com


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