... 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.

I have what?

This blog was very difficult to write- it brought back many strong memories for me and tears.   In the moments described below my life changed from the innocence of youth to the reality of fighting a serious disease.    Today’s entry deals with finding out the diagnosis.

There is that limbo time that everyone has between first surgery and the ramping up of treatments.  I was on a mixed-message high during that limbo time- on the one hand I was recovering well from surgery.  On the other hand it was clear I had something serious and was referred to a specialist with not much other information other than “you need to see him.”    We were given a name and a phone#.  I think it was my Mom that called and made the appointment.

However this specialist-, who ended up turning out to be my primary oncologist, was a different kind of doctor to deal with.   I was used to Primary Care doctors who I saw once a year or a surgeon who would operate on me & be out of my life.    This doctor- well.. he lacked people skills… and tact.  An attribute that I think he later came to realize and he worked hard on trying to change.

At the first appointment-  He was also the one who first uttered the phrase “Embryonal Rhabdomyosarcoma”.   It was a rare form of a cancer and I needed to get treatment.  

I know that I broke down crying- I was upset.  I knew very well what cancer was but when he put it bluntly stating that it’s a tumor that can be hard to treat because it develops resistance, it was harder than usual to take.  He indicated that I would be getting chemotherapy but he couldn’t say for how long.  My parents were curious about its origins; he didn’t have an answer but did say it typically comes out of connective tissue.   

He wanted me to go to a surgeon and a radiation oncologist.  His hope was that this surgeon could do great things.  This surgeon was very skilled & respected.  He had worked on tough tumors & been able to do things that few others in the country could do.    This information alone was something bright for me and my parents to hold on to.

I saw the surgeon first and after waiting 4 hours, he came in & chatted with me & my parents.  He indicated that the tumor was too large to operate on and that it had to be shrunk first with chemotherapy & radiation.   After it was smaller, we could see him again & re-assess if surgery would help.  He asked if I had started treatment yet- I said no.  He seemed puzzled, if not frustrated.  It was approaching three weeks post surgery and I think in his mind- things should be moving much faster.

Our bright light of hope was dimming.

The surgeon’s whole approach seemed almost impersonal.  Not as bad as the oncologist but he was obviously not engaged emotionally to anything going with my health.   This irked me & my parents a tad.  So we called our oncologist and let him know we’d seen the surgeon & wanted to know next steps.   We didn’t get a call back.

So here we were in limbo land together.  Overwhelmed.  Not sure what to do next.   Looking for direction.  And we needed a break.

I already had an appointment the following week with the oncologist so we decided it was time for  mini-vacation.  Off to Maine we went.   Now this summer, unlike prior summers would be different.  Normally I would have spent the entire summer there but my schedule was up in the air.  While we were on vacation- the oncologist called and asked if he could see me tomorrow (it was Monday) and I said- no that I was in Maine.  I couldn’t get down to his office in time.

I remember that next oncology appointment clearly.

 We were called into the doctor’s office and the doctor asked to speak with my father outside.   A few moments later- they returned.  My Dad was visibly angry.  

The oncologist proceeded to explain he didn’t think we were taking my condition very seriously.  To which I erupted in tears.  My Dad Exploded- yelling at the doctor and telling him we had given him all the information he needed & he didn’t call us back.  What were we supposed to do?  Sit and wait?  We have lives to live!   He demanded a plan, a schedule.. something that told us what was going on.   One thing my Dad was very good at was expressing himself when he was angry.

My oncologist explained (and he probably did this at the first appointment as well) but he was saying it for emphasis- I had a stage 3 tumor that was attached to my right hip & now appeared to be invading other tissue nearby. 

He did have a plan- I would get high dose chemotherapy.  Four Drugs. Then about a week after the first treatment I would start high dose radiation for two weeks.   A week after that ended- I’d have another chemo treatment… Then wait a week & a second round of intense radiation.   He said this treatment is aggressive because this tumor is aggressive. 

Adding the days up- I began to realize that college was not an option.  Not this fall.

The family dinner that night- on a warm summer June Evening was quietly emotional.   We talked about what we learned that day.  My Dad ranted again about the doctor.  And my Mom burst in to tears as she realized she would not be able to spend time in Maine this summer.  A place she had grown to love every summer for its peace & removal from the hustle and bustle of where we lived. 

I was lucky to have my friends calling me- though fewer of them now.   They helped me get out and do things and get my mind on other things other than cancer.   They helped me get away from my parents who were polar opposites when dealing with stress- my dad with rage and my mom with tears. 

I’m not sure what made us stick with that Oncologist.   After such a rough start, you would think, we would have tried to find someone else but the fact was that we knew nobody else.   He was the only one that we were referred to.    He was the one that could handle cases like mine.

My chemo was scheduled for early the following week and the blitzkrieg of simulations & testing needed for radiation were also scheduled.   I knew nothing of what treatment meant to me.  I would learn that as I went along.  

I had a diagnosis now- something concrete to refer to.   My prognosis (aka Future) was still murky and a lot rested on how my tumor reacted to the treatments.    Everything else was secondary to killing the tumor.  Cuts, Scratches, sore muscles were inconsequential.     Now, I was 4 weeks post surgery and I had to get used to saying “I’m going to have treatment for Embryonal Rhabdomyosarcoma”. 


And so it went as I introduced myself or said hi to friends.    While it was easy to say “I have cancer”.. I’d always be asked what type… So naturally, I just skipped the cancer part and let the 11 syllables float off my tongue.  And I’ve gotten good at it too… like a new foreign language.    

No matter what language it was in, nothing could prepare me for those first words of diagnosis.   Being diagnosed was devastating and how I adapted as treatment unfolded will be the topic of many future blogs.


This blog originally posted on 3/13/2011 on http://www.rhabdomyosarcomainfo.com

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