... 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.

A Phoenix Rising...

Today’s post is a celebration of sorts.   I’ve reached an important milestone in my survival.  I want to spend this blog entry talking about how I adjusted to physical change and how I’m so very glad that I took the steps that I did in 1988.

On August 11th, I arrived home with two new ostomies that had been created only a few weeks earlier.  I already had the confidence that I could walk around and play pool and eat with little difficulty.   Now I had more new learning to do.   How would I deal with these things on my belly?  How would I manage them without a nurse nearby?  Do I change them like the nurses had been doing by lying in my bed or some other way?

And that underlying question that was left unspoken- “How do I feel about me?”

I was no longer the Bob of my first 21 years… I was “New” Bob, with a self-image that had taken a beating over the past year and a half.  And yet, I’d pressed on throughout that Freshman year of college.  Now I had these two new things on my belly- just what do I tell people now?  Will they see them?  Will they know? 

My feelings were not too dissimilar to what others have felt before me.   Getting an ostomy is a huge adjustment both mentally and physically.  While the physical scars heal quickly, the mental ones, many of which you create by over-thinking the possibilities, last for much longer.    

So as with any new experience, I took my first steps “on my own” with the comfort of my family around me and with two animals that had an acute sense of smell.  It made me wonder if they (the animals, not my family ) understood what had happened?

How would the dog & cat react?   Would my dog, Chester obsess at sniffing the pouches through the clothing- what about the cat (named Blue)?  Would he run away as if he detected something he didn’t like?  Well, the no brainer here is that the dog reacted just fine… He was happy to see me for about 2 minutes and then was like “ok where’s dinner?”  

Blue on the other hand- took a different approach.  Blue came in at night, as I was sleeping- jumped up on the bed just as he normally did.   Then he realized that my belly was comfortably soft… kinda like a water bed.   And it was warm… He began doing that kneading that all cats do- purring and very content with his new discovery.    I was sound asleep but then woke up feeling quite sore on my belly.   The weight of Blue and his kneading didn’t help my stomas or belly.  I had to ask him to sit beside me.   He would for a while, but then try to return to that new bed he’d found.  I had to lie on my side so he’d stay put.  My cat blue had developed an affection for my portable waterbed.

As I gradually negotiated with Blue each night on where he could sleep and where he could not, I became aware of something that had not dawned at me in the hospital.    I was getting a full night’s rest.  Prior to the surgery and that admission in 1988- I had grown used to getting up 2 or 3 times a night to go to the bathroom.  I had been wearing diapers to help avoid accidents but those were no longer needed.  My life felt normal again.

Pouches only filled at night if I ate something that well… sped the digestive process up.  Otherwise- for the most part, just like all of you normal pooping people, my intestine went to sleep when I went to sleep & woke up when I woke up.  It’s behaved that way forever.

And in an unexpected surprise- I found that my body was aware when pouches needed emptying at night.   If one pouch would get too full, I would wake up.  I can’t explain why- my guess is that it’s the increased resistance I feel when rolling side to side in bed.  The full pouch added to that resistance & I could feel it being “tugged on” by the sheets.

For the Urostomy- it was different.  For that, I hooked up to the night drainage unit.  I was able to monitor how well my fluid intake/output was doing each night by watching the level night to night.

Ok, Ok, Ok.... I think you and I both know that I’m avoiding the question I asked 10 paragraphs ago.  So let's re-direct shall we?

I still saw me as me.  But I had no idea how people would react to me.   My decision was that explain my pouches was pointless and none of their business.     That’s not to say I didn’t struggle at it first.  

Who was I? 

“I am Bob.. and I don’t shit like you do- nor do I take a leak like you do either.   Nope- I pretty much do everything the same as you up until the small intestine- then I am different.  Oh yeah, and my shit still stinks.”

I very much wanted to define myself as a person without defining myself as the disability and then the person.   For example- there is a term (I hate it) called “Ostomate” meaning a person who has an ostomy.    This term grates on my ears like nails on a chalkboard.   “I am Bob and I have two ostomies” is the best I can do.   I refuse to define myself solely by the disabilities I have.    Now I can say, I am Bob, a Project Manager in Healthcare Systems who understands clinical workflow & revenue workflow.  

However, back when I first got these ostomies- all I could think of was “I’m Bob and I have a Colostomy and an Ileal Conduit.”   In my mind- if I approached everyone I met at college like that, it would lead to many any awkward “oh really, that’s nice- say, I have to go fetch my laundry, talk to you soon” kind of responses. 

So initially, I defined myself- as I had Freshman year, as a cancer survivor and left it at that.  Cancer Survivor sounded better than “Alternative Digestion Man.”  My roommate knew that I had the ostomies, my family new that I had them… but I didn’t go advertising them to anyone and everyone.  I, alone would manage these stomas.  I would learn how to apply the flanges & pouches.  I would learn how to deal with accidents (yep, we all have them).    I would be in control of what information I choose to share and who to share it with. 

I’ve met many people through support groups and seen many differing reactions.  Some people look forward to having the ostomy.   A Lot of People dread it.    Some people dread it so much that they’d rather take their chances without one.   The way I made my decision to go ahead with surgery was that I didn’t want to be known as the kid who died because he didn’t want to poop differently than everyone else.  That’s really what it boils down to.    I’m a human being- still have feelings, a sense of humor & and an ability to go and do activities that I enjoy.   I wasn’t going to stop it just because I no longer wiped in the back. 

As a guy, how would I tell a girl I was dating?   I don’t think I’ve found the precise answer on that yet.  It depends on the relationship and the honesty level between the two people.       This quandary, combined with my natural independent nature, kept me from many dating ventures.   It was easier to avoid than to try.    I had a few dates in college and all of them went well… none were disasters.  Since college, I’ve had a few dates and several disasters.   Everyone has them (disasters that is).

One time I had ¾ of date with a young woman who could tell that I was nervous and she made the statement “just relax… I don’t bite and if asked I’m happy to oblige”… Not kidding on that one folks- she actually said that… first date… only date.

I had another that was more promising- but she was a very “touchy-feely” kind of woman.  She wanted to hold hands and cuddle and such.  I was forced into a situation where I had to tell her about the ostomies before I really knew her.   And of course- she called it off at that point. 

I can tell you that I’ve become very good and enjoying meaningful friendships with people.    Those individuals have been the most important pieces in my day to day life.  I still have my independence but I know that there are a few people that I can really rely on.  They look past the ostomies and know me for me.   They probably have the same wicked sarcastic sense of humor that I tend to dole out in heaping portions.    They are people who treat me as a person.

I’ve known many individuals who have ostomies that have supportive healthy relationships with their spouses both before & after the surgery.   I’ve known others who start families.  I do know that an ostomy is not a barrier to finding your soul mate. 

My soul mate is probably out there someplace- we’re just misaligned and not in the same circles of people .  I’ve accepted the fact that my independent life is who I am.   I am not incomplete or a partial person because of the ostomies, the cancer, or because I choose to live independently. 

The attitude I have now is one that developed over many years.   I understand the uncertainty that everyone feels after getting an ostomy but I can tell you unequivocally that life can go on.

With my ostomies I have:


  • Continued to Swim every summer in a nice cool lake
  • Enjoyed the Caribbean waters (3 times) spending hours in the water & snorkeling everywhere
  • Swam in both the Pacific & Atlantic Oceans
  • Played Softball on a championship slow-pitch softball team (several years)
  • Carried a full time job & gradually get promoted
  • Enjoy watching baseball games in the heat & humidty while chowing down on a hot dog and a beer.
  • Purchased my own condo.
  • And most importantly- I lived my life.   Nothing about having an ostomy stopped me from trying to do what I wanted to experience.


Living my Life is why todays’ post is that celebration I mentioned.  

Twenty-five years ago in late July of 1988, I was in the ICU fighting for my life.  My body was withering into the ashes of an illness and its complications.  It was not my time to take the last exit on the left and like a Phoenix I had sprung to life once again. 

This week marks my 25 year anniversary of receiving both ostomies.   It also marks the 25 year anniversary of me being clear of Stage III Embryonal Rhabdomyosarcoma.   So this weekend, I’m going to toast myself at my local sports bar as I watch the game & enjoy the atmosphere (and food).    It’s been a wonderful 25 years  and I’m sure I’m holding some sort of record as one of the longest living “persons with a double-ostomy.”

I want everyone to know that Life can continue despite great physical & mental challenges.   In some small way, I want to think that I’m illustrating that very nicely.

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