... 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.

An Interesting Turn of Events

You’ve seen them before, the sci-fi movie where your hero is flying a rundown spacecraft through horrible conditions- maybe an asteroid field filled with mines.  The musical score is at a frenetic pace as he bobs & weaves while his spaceship slowly gets pummeled- it’s coming apart at the seams.   Will he make it to safety?  Or will he be smashed to oblivion?

In January 1988 when I returned to college for spring semester- I was that space pilot.   Holding it together as best I could, there were things that I wasn’t able to control but I was damned sure that I was going to continue my college efforts. 

Based on my hospital episodes of the past month- blood from my bladder generated great fear.   When the bleeding started, it was a week past my chemo dose- typically when my blood counts begin to drop.   I had to drink more water.   I had to drink tons of water.   I checked my pulse log and noticed the gradual uptick in my morning pulse over the past few days.   Things were lining up for a crash.  When I started getting dizzy- I called my doctor & he told me to get to the emergency room.

There goes pitch control, there goes yaw left & right- my spacecraft was taking a beating.

I think I took a taxi to the emergency room that night.  I got into a bed and recounted what had been transpiring.  A catheter was inserted & hydration started.  Blood test were taken and they showed low blood counts.

I would be admitted for observation.

But then- as I lay there in bed, in the emergency room.  Something strange happened.   My chest started pounding- thumpa, thumpa, thumpa.  No pain.  But I was a bit out of breath too.   I called my nurse once.  No answer… I called my nurse twice… still no answer.   Finally I blurted out “Hey, something’s wrong!- Help!”   The nurses came over and I explained what I was feeling- one of them put her stethoscope to my chest & listened.  And listened.   She looked to her partner and asked to have the cardiology fellow paged. 

Now I was freaked out.  Four other medical staff rushed to my bed and stood watching the one monitoring my pulse.

She indicated that my heart was beating very fast- not sure why… but it was…  She asked to have the telemetry machine hooked up so they could watch what was going on.

Now my admission was not just routine observation- it was to figure out what was going on with my heart.    Numerous scans were scheduled.   And I met with the cardiology doctor too.  He said it was time for me to go on some medication.   He did indicate that this could be just a temporary thing.   Just like my Internal medicine doctor, he was very clear in his approach & why he was managing my case the way he was.

After several days, a clearer picture of what was going on took place.  In my panic that night when the bleeding had started- I had consumed a great deal of water; so much so in fact that I became overloaded with fluids.  My heart didn’t like that.  It was also true that my heart’s damage from the Adriamyacin was reaching a critical crescendo.    It was great that we had stopped that particular chemo drug- however now I had to deal with the consequences.

It was also several days after admission- that my internal medicine doctor came in & sat down to chat.

He was always very personable and answered every question.   My biggest question was “So now what?”  How do we manage this new problem?  He indicated that he’d had a discussion with my NYC Oncologist.

The simple facts were these:

  1. I was not stable medically- my blood counts showed a downward trend since September.
  2. All scans to verify what was going on with the cancer had been coming back “undetermined” or “inconclusive” for at least 6 months- the scarring made them impossible to read.
  3. My lungs were clear of any sign of metastasis- the lungs are one of the key places Embryonal Rhabdomyosarcoma goes when it spreads.   (my original dx was Stage 3)
  4. I had multiple organ issues that needed to be monitored and possibly fixed.

He looked up from my chart and said- “I’ve made the decision to stop your chemotherapy treatments.”  

“For how long?”- I asked.

“For as long as it takes to stabilize you.  I just don’t think it would be wise to continue chemotherapy with your health in this state.”

“Am I cured?”

“I don’t know- but with time we’ll be able to make that determination.”

On the one hand- I had been waiting for a day when someone would say “you’re done with treatment & you are all better.”   On the other- I kind of felt that- in a not so direct way- he was saying “you’re too sick to continue and I’m not sure when you’ll recover.”

After he left, my mind raced with what had just transpired.   The message sank in- chemo was finished.  That alone lifted a huge weight off my shoulders.   My mind took this news and energized me.

In other words, I had reached a quieter part of the asteroid field and I could step back and assess the damage & dents to my spacecraft.

I remember calling my parents- who also came up to visit while I was in the hospital.  I was so happy to tell them that chemotherapy was over.   I had new medications to take after this admission and they worked very well. 

I still had to get a transfusion in February and by March- I started having Stent problems again.  It coincided with Spring Break.   Instead of spending time at home, I spent it in the hospital.  My urologist did two things for me during this stay.   First, he treated my bladder with formalin (kind of like formaldehyde).  This did amazing things.  Bleeding from the bladder-  just stopped.   It didn’t remove the need for me to wear diapers at night but- it was nice to have no bleeding in the bladder.  

The second thing he did was introduce me to an internal medicine doctor who worked with oncology patients.  I think the urologist recognized that I needed a doctor in NYC to manage “the whole patient.”  She was a great ally to have & she was able to communicate nicely with the doctor’s at college.

When I returned from Spring Break- I noticed something.   It had been happening gradually since January and it pumped up my spirits.


That  and I had a very short buzz cut of hair- it sort of suggested that I was still on that swim team like the dining hall staff thought early in first semester.     And my cheeks were pink!   I had color in my face!

I think what was most noticeable though- was a definite shift in energy.  Chemotherapy (and the blood loss) had be wearing me down.  I had become accustomed to feeling like crap & just being happy with feeling less crappy than usual.    Now, it was different.  I actually felt good.  I felt almost normal.   I felt in many ways like I did before I started treatment almost 2 years ago.   Even the doctors saw the changes- I think it made him and his staff happy that I was doing better.  

With this “Spring Renewal” that I was experiencing, things were still changing quietly inside me.  The problem was that the bleeding and pain in my colon was gradually getting worse.    It was the one thing that set me into a panic when I was alone.  Was the cancer in my colon?  What does this pain mean?   Fortunately- it only really bugged me when I went to the bathroom.  

I did my best on enjoying the month or so that I had left of freshman year.

Nobody stared at me- and those that did-.. well, it was different.  Yup.   I think there were some girls there who thought I was dang spiffy (yes, I just wrote spiffy).

One thing that stopping chemotherapy did not change though- was my usual quiet self when it came to interacting with anyone.   It took me a while to know people.  I wasn’t one to open up & tell all.  And yes, I can proudly say that I was one of those guys- that girls would notice in the dining hall- but catching him in an awkward frozen gazelle-like stare with nothing to say. 

It was a bad habit.

It mirrored the fact that Sci-fi movies with heroes in beat up spaceships don’t make for much “flirty banter”.   Especially when said hero is in deep space, by himself with no one to talk to.

Maybe occasionally I’d have a few words or comments to say at the right moment- as I spoke with the dining hall staff and the girls behind me in line might giggle at what I was saying.  But I never knew what to do next.   I never really learned that part.  

I didn’t have the social outlets to interact.   Most of my floor mates were hell bent on getting drunk Thursday, Friday, Saturday & Sunday nights.  Not me.   I wasn’t going to do that.   To put it simply- I’ll quote a shirt that was made at Planet Cancer “I’ve done drugs that Keith Richards has never heard of”.  My body had been through a ton of stuff since June of 1986.   Drinking was never a priority for me. 

My new Roommate (another “David”) also shared the same quiet college life approach.  We agreed to room together for Sophomore year but on South campus- away from the noise and chaos of the residence halls.   He was a good roommate… His father was a physician but had passed away several years earlier.   David didn’t seem to mind my health issues and he was quiet- he was in the engineering program.  So he had lots and lots of homework to study.

One of the other areas I had branched into was getting involved with other student organizations.  In particular there was one for disabled students.  It’s goal was to be an advocacy group for students who have disabilities.   It also worked with the administration to review all planned building construction to insure that proper handicapped access was included.   They ran seminars, workshops & sponsored a local advocacy conference with an Independent Living Center in the area.     I worked tirelessly helping get the conference mechanics planned- meals, budget, logistics & location.

Now this group- called “ODS- The Organization for Disabled Students”, had a very small core of people actively involved.  The president, Julie, had helped me several times getting too & from appointments. She had great networking skills & helped me connect with other student organizations who would be interested in helping out with our events.   Julie wanted me to apply to be president during my sophomore year.  I was flattered and since I was feeling much better energy-wise.  I jumped on the chance.   I had two VP’s- Brian & John.  You can check out John’s great current work here:  http://www.ourability.com/pages/inspirational-speakers-with-disabilities 

It was going to be an interesting sophomore year where I could finally be as active as a normal college student.

As I think back on Freshman year at college- I take pride in what I did:

  • I continued my chemotherapy until my body and my doctor said “no more.”
  • I missed six weeks of school due to hospitalizations and/or treatments
  • I carried a full course load (4 classes each semester) and passed them all.  (3.0 average)
  • I discovered the meaning of having hidden disabilities and the challenge that they can present when trying to interact with other people.
  • I was my own advocate for my health and I asked tons of questions.

But equally important too were the facts that:

  • My freshman year at college was not the one where I let loose with new freedoms of having no parental supervision.
  • I missed the boat in setting up that strong group of friends- for many reasons & this hardened my already staunch sense of independence.

Finally home from school in May- my focus returned to my health.   The colon issue was worsening.  Scans that I had done were still inconclusive.  They showed a mass of something- but would not confirm if it was cancer or not.  I also had what I thought was another blocked stent.  In fact this time, I was also having bladder spasms which were extremely painful.

My urologist took my word and replaced the stents in May but when he did it, he noted that they were not plugged.  There was no issue.  So while my kidney function did appear to be mildly impacted- he wasn’t sure why.  It didn’t’ appear to be a stent problem.

He was concerned about my progress.   He wanted a clearer picture of what was going on.   He referred me to a specialist (the only one in nyc at the time) for my tumor in a pediatric clinic.  This specialist was fantastic.  A very clear communicator, she came up with a plan on what we would test & what we were trying to verify. 

She asked that I watch for any unusual fevers- spontaneously getting them without really having a cold.  A fever can be an indication that something was happening with the cancer- but it’s about as precise as asking “if the ocean is blue, why is it cold?”  A fever would mean they would have to do more testing.

She even did a bone marrow biopsy from my Sternum.  Oh that was a hoot- glad I only had it once.  They don’t sedate you & the momentary pain when they “hit the bone marrow” with the needle is nothing short of friggin’ painful. 

Every test came back negative for cancer.  Which was great!

However, I still had the colon problem & my kidneys were hurting again.  I was more tired… I had no appetite… But no fever.   My urologist suggested that I was fighting a cold.  A what??

It’s important to note that during the time I was on chemo from June 1986 up until January 1988- I never had a cold.  Not one.  Not the flu… Nothing.   Chemo kills colds too!

I think all of my self-advocacy tactics really started pissing people off.   It felt as if my health was going backwards- I was getting sicker but the cancer was gone.   So why am I getting sick if the cancer is gone?   I found myself disagreeing with the doctor’s who were trying to help me.   I’d challenge them on doing more tests or trying to find some other cause for my malaise.

It got to a boiling point in late June 1988.

After arguing with one of the urology residents on why I felt crappy- I got an urgent appointment with my internal medicine doctor.  She called for some additional tests and a bladder scan.   The bladder scan pointed at a problem that had not been considered.   It wasn’t draining completely.   In essence while I was able to go to the bathroom just fine- the bladder would never fully empty.  As a result the urine would back up the tubes into the kidneys and cause the pain.   I was lucky I had not developed any sort of infection at this point.   It was also clear that over the past month- my kidney function had been slowly decreasing again- probably a symptom of the bladder that wouldn’t completely empty.

I had to be admitted.  They had to figure out what was going on.   I was getting medically unstable again.  I lay there in bed, with bladder spasms, unsteady blood counts, a bleeding colon & a general sense of malaise.  

My urologist had seen enough- it was time to bring my case to the Pediatric Tumor Board.

And my spaceship- it had docked & powered down for a long rest.  It was going to be awhile before it moved again.


(insert dramatic- dom dom dommmmmmmmmmmmmm) here…

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