Rhabdobobbo!

... 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 End Game- of sorts.

The Summer of 1988 was a hot one in New York City- many heat waves and not much wind to cool things off.   Had I been at home during that summer- it would have been brutal (we had no A/C in the house) but as it turned out… I was in the hospital for most of it.

This hospitalization was going to teach me more about healthcare than anyone would ever want to know.   Most importantly, I had to start being more specific & demanding on what I needed for my care.   My experience told me over the past 12 months that my medical case was unique.  For example- how would they increase fluids to prevent blood clots in the bladder without causing an issue for my heart? This meant that I had to educate the doctors- specifically the residents on what to expect and what I wanted.  I was and continue to be my own advocate in my care.

Prior to this admission, the arguments with the residents and even my attending urologist had been increasing.  I think they were getting a bit fed up with my insistent demands to fix the problems I was having.   I was tired of this “in the hospital” vs “out of the hospital” cycle.   I wanted answers and I wanted a plan.   After I was admitted 6/27/1988, the residents, who knew my case from my prior admissions earlier that year, handled things well because they understood what could & could not be done.  I had to be hydrated well and we had to watch multiple organs & my pain. 

This was well and good up to June 30th.

Then July 1st arrived.

At this Academic hospital on July 1st, the Resident Physician pool changes.   A fresh set of doctors join the force and the ones that had been following me- moved on to other specialties for continued growth and training.

The knowledge transfer process was difficult because people relied on what was in the paper chart at that time.  They didn’t cover all the other issues I’d had & other health issues that occurred in other inpatient stays.  They didn’t have a nice historical synopsis of everything that went on in my care since June of 1986 to that point. 

So it was a bit of a surprise when on July 2nd, the new resident walked in- I’ll call him “Stan” (not his real name) and asks me about being discharged that day because everything seemed stable.  I was a bit pissed.  I told him in no uncertain terms was I going home and that I thought it best for him to speak with my urologist about the plans- including the pediatric tumor board.  He didn’t object. He seemed caught off guard but he agreed to speak with my attending urologist.

As days went by, I observed Stan and how he worked.  I realized that my case was over his head- it overwhelmed him a bit because there was so much to keep track of- the bladder, the colon, the heart, the kidneys and the pain.   And keep in mind, this is why Residency programs are so important- it exposes the “attending-doctor-to-be” to real tough situations & complex medical issues that can’t be solved simply by putting a band-aid on something.

One observation I had of “Stan” and people in general was that it doesn’t matter what profession you were in- there were always people who take different approaches to their work.  There were the overwhelmed ones who can withdraw and eventually lose interest in that career path.  There were the ones who just get by with doing the minimum amount of work. Then there was the go-getter, the one who wanted to understand everything & grow in their career- accepting the fact that they might have miss-steps but they were willing to work towards improving their skills.

“Stan” fell somewhere between overwhelmed & getting by with the minimum amount of effort.   The good news was- he wasn’t a bull-shit artist.  I could spot those a mile away & yes, they exist in healthcare too.   These “artists” love to quote studies & statistics as opposed to discussing hard cold evidence & facts with a patient’s specific illness.   When a doctor talked to me, I was listening to how he/she presented information on my case and how he/she would justify recommended steps.

This is one of the many reasons why I liked my attending Urologist so much.  He was a cold hard facts kind of guy & when he presented information it was direct, not sugar coated & specific to my case.   Some called him blunt and cold-mannered and to some extent he was.   But I know that I had seen him smile and that there was a human being behind the blunt exterior.  

My only hope was that by mentoring “Stan”, my Attending Urologist would instill in him what steps to take & how to handle complex medical care.

And I wasn’t discharged just yet. 

My case was brought before the Pediatric Tumor Board at the hospital and it was reviewed from beginning to present.   The goal of this review was to recommend the next steps.   My Attending Urologist had already told me “I don’t know what the next step is” and he needed feedback. 

That brings up one important point that I need to make here- more physicians need to be comfortable with saying “I don’t know.”   The ones that avoid this phrase- usually turn into the aforementioned bull-shit artists.    For me, hearing an experienced physician say “I don’t know” earned some respect.   He did have a plan on how to figure things out but he admitted when he needed help.  The Pediatric Tumor Board was that help.

So as I waited and dealt with the occasional dizziness, pain & bleeding that seemed to be progressing.  I had to find a way to break up the monotony of staying in my room all day.  So I chose the one outlet I had- the patient activities room where I could shoot some pool, play bingo or cards.   I’d try to do it when I wasn’t too dopey from the pain med so that i could get myself there and back.   There were times, however, I’d have to leave the activity room and return to my room- if only because the pain had increased & I needed something to make it go away.

And in 1988 at this hospital- they didn’t have the self-administered pain pumps.  So each pain shot was an injection into my muscle.  I had a rotation: left thigh, right thigh, right arm, left arm, left buttock, right buttock and repeat..   With time, even these shots gave me sore spots.

My appetite- such as it was… fluctuated up and down.  My family did try to visit me every day but after a while, even that slowed up… Partly because they’d arrive right after or right before I got a pain shot and I’d do nothing but snooze.

Then there was my roommate Bill.  Bill was a nice guy but Bill had a gift…. For snoring.  No, wait.. let me clarify that… When Bill snored, he could loosen the rivets on the cast iron beams holding this hospital up.    Dare I say that his snoring made me feel as if the room was vibrating.   I would end up yelling his name telling him to roll over.   He would… and things would be quiet for a while.

Bill had a friend of his- Flo… who came by every day.  Flo had a very thick New York accent (they were from Queens I think) and she loved helping Bill out & caring for him.   They were not married.  It just seemed like they were good friends.  She would help him with his meals and talk with him.  Their favorite activity was betting on horses at the races.    Flo had a timetable every time she was there so she could leave in time & get to the betting place before it closed for the races they wanted.   Flo was a talker.  She could talk about anything- we’d talk about areas of New York we liked & didn’t like… what we really thought of the subway… going to school… anything.

It was great to have a nice roommate & his friends to help break up the hospital room environment.  I even got sucked in to recommending a few horses to bet on.   For a guy that had no clue on horses, I was consistent in that we won nothing that day.

One afternoon, Bill had hit his nurse call button and Anna came in to see what he wanted.  He had a headache and then mumbled something else.   Anna’s voice became louder- “Bill?”  “Bill?”  “Open your eyes Bill.”  Flo was there at the end of the bed and her face went white.    Bill’s face went blue.   Anna yelled out for assistance & hit the emergency nurse call alarm.  Within seconds teams of nurses & doctors flooded the room. 

I realized that this probably would be a good time to get up and leave them alone.   Anna looked at me and nodded “yes, that’s a good idea.” in a quiet voice.   I looked at Flo and with my IV Pole in tow, guided her out of the room.  We stood in the hallway as they worked away.  Flo was visibly shaken and crying asking “What happened? What happened?”

Bill was transferred down to the ICU.   The investigation revealed that he had a small stroke.

Flo came by while he was down there to give me updates.  When he did finally return- he was placed in a different room.

Seeing Bill, who was seemingly normal one minute & then in a life threatening situation the next, made my mind race.  I mean, this is a hospital; people are safe in the hospital right?   It was a bitter reminder that complications can occur anywhere- even where you feel most safe.  

What about me?  Could something like that happen to me?   Part of me just scoffed it off thinking that only “old people” get strokes.  Hey, just because I was a cancer survivor doesn’t mean I wasn’t a tad naïve on other health problems that can occur at any age.  My thoughts were that I had already had my quota of complications- I shouldn’t be allowed to have those really really bad ones.

Shortly after this event, a decision was made on what to do with my care.   The attending came in, with his group of residents and discussed what was going on.  He (and I) were frustrated at the fact that nobody could say that the cancer was gone and it was equally apparent that I could not continue living in this cycle of hospital- rebound- hospital.   My Bladder, Kidneys & Intestine were heavily scarred & much of the tissue was not behaving normally due to the radiation damage.

He said that the tumor board felt the best approach was to perform temporary diversions- so that tissues could rest.   Instead of my bladder- I would have an Ileal Conduit Loop.  It was a piece of small intestine that they would hook up to my ureters and then force the other end out through a hole in my abdomen.  I would then have to wear a pouch to collect the draining urine.   The Attending Urologist was equally clear that there was no easy way to predict how radiation damaged tissue would recover- if at all.  I could end up with this pouch for the rest of my life.

For the Colon- I would be getting a Transverse Loop Colostomy.  Think of this like bending a garden hose and then clipping off the bend.  It too comes from a hole in the abdomen and has an active side & an inactive side.   Again, the hope was that by letting the tissue rest (from the inactive side down to my rectum), that they’d be able to take this temporary colostomy & reverse it back someday. 

It was a complicated surgery because of all the scarring and the fact that the attending wanted to do a thorough inspection of the remaining mass, tissues & bone to make sure once & for all that there is no cancer left.    I would have to be transferred to the ICU prior to surgery so they could put me on some special medications to help my heart & some special monitoring devices.

Now I’ll admit, I’ve met many people who’ve had to have the same procedures and have reacted in fear and anger.   For me, I saw this as a way out- a way to get out of the “hospital-rebound-hospital” cycle and to finally get back to a normal life.  Both ostomies were going to help me survive- which was my goal first and foremost.  I didn’t really have time at that point to absorb what it would mean to me & my self image.  That would come later. 

Two days before surgery- I had a small medical speedbump.   A speedbump that today, can be avoided because doctors & nurses have electronic clinical systems putting in safety checks.  

I was on Digoxin at that time and it had to stay at a specific level which they verified through blood tests.    Well, the level had become too high & the doctor put a note in my chart to hold giving me that particular medication.  When the Digoxin level gets too high, it can make people feel sick and it can even make the heart perform worse.

The nurse missed that doctor’s note to stop the medication.

I continued getting the Digoxin for 3 days until I was throwing up and that was when the error was discovered 2 days before surgery.   I was lucky.  They immediately started monitoring my pulse hourly & gave me some medication to help with the nausea.    I did not develop any serious heart issues because of this mishap but the surgery had to be postponed until the following week.

Finally the day came & I was transferred down to the ICU.  While I was nervous, I knew that the goal was to make me feel better.  

I knew that they wanted to put in a Swan Ganz heart monitor so they could precisely measure how well my heart was performing.  Basically this was inserted through an artery in the neck and it included a balloon which they expanded/contracted so they could get precise measurements on blood flow & heart pumping.   It was a relatively quick procedure and it gave them the benefit of having an easy IV access for drawing bloods too- instead of having to go to my veins which were pretty much swiss cheese at this point.   Trying to hit veins in my arms was only possible by someone very experienced & very gifted in phlebotomy techniques.

Then came the arterial lines- these were different IV’s.. they had to go in my arm & into my artery.   Funning thing about arteries though- they are deep in your arm.  And usually they run in parallel with the nerve running through your arm.  This procedure was a bit more disconcerting.  Mainly because on their first 2 tries- they missed and on one of those tries- they hit the nerve.   I yelled out and I burst into tears.  They did their best to calm me but this was the catalyst to finally let my emotions out and show how scared I was.

With all that pent up fear, it was great to have ICU nurses who could talk with me.  They listened.  They had empathy.  That’s all I needed.   They couldn’t answer what the future would hold but they assured me that they would be watching me and every instrument gathering data.   So as I lay there crying with my dignity long gone in a hospital jonnie that doesn’t quite fit right- these ICU nurses helped me by being human… and listening. 

The day of surgery- my family arrived on time!  I don’t remember much that morning- I figure by that time, they were probably regulating a lot of my emotional well-being with something in the IV Drip.   I don’t even remember going to the Operating room.  I was asleep in the ICU and I woke up in the ICU.

As groggy as I was, I do remember some key things.

I could hear & understand the voices around me.  I could also hear all the monitors beeping & ticking in and around my bed.  

I became aware that I had a tube down my throat still- what the heck was that there for?   As I motioned to try to grab it, I found my hands tied down.  The nurses were there.  They explained that the tube was there to help me breathe and that they would also use it to get some of the fluid out of my lungs that was collecting there.   I didn’t know what that meant but when it came time to “perform suction”- I was very aware of what it meant.  “Performing Suction” was akin to taking a miniature wet-dry vac hose and sliding down my throat (through the placed tube) and then sucking the fluid out of the lungs.   While not painful, it did make me cough.  Which was painful in that my abdomen now had 2 new holes in it that did not want to be disturbed.

After a few hours, they removed the tie downs on my hands.

The other thing I remember is that my two primary nurses had a special sense of humor.   Such is the case with changing my bedsheets without getting me outta bed.   They were laughing & giggling and talking in mock southern accents- almost oblivious that I (with my eyes closed) could still listen.  They were joking about the right way to change bedsheets and how one of them was doing it wrong.  They paused and asked me if I could understand.   All I could do was make a circular gesture with my hand by my ear indicating that they were looney.  They both burst out into hysterical laughter.

Opposite to my ICU Nurses’ behavior was the group of Attending ICU physicians who would round 3 times a day discussing my case & progress.   They would do this by standing around my bed and talking about my history & my care.   Most awkwardly, they’d do this without talking with me.  It was like I was there but I wasn’t.   It almost seemed impersonal- that I was a lab result or set of device readings.   Nobody asked me “how are you feeling?”   “How’s the pain?”  “Here’s our plan to get you out of the ICU…”   Me being my own advocate- I made sure my ICU Nurses understood how much I hated the impersonal approach to rounding and that I was gonna clock the attending if they didn’t at least acknowledge me with a “Hello, how are you doing?”

48 hours after surgery- I hit another speedbump.

“Stan” had arrived- it was a Saturday morning.   He had to inspect the incisions & ostomies to make sure things were ok.   The Ileal Conduit (aka Urostomy) was in great shape.   The Colostomy was not.  Somehow, in my motion of resting on my side- things had begun to tear open.   I had a prolapse and well, my guts were falling outta me.  It wasn’t huge & probably was kept small by the adhesive wafer  around the stoma.  Once that wafer came off though- “Stan’s” Face went white.

The attending on call was paged- he came down (not my Attending Urologist but another experienced one in his practice) and he explained what Stan had found.  This had to be fixed.   Now.   Before any infection sets in. I was rushed to the operating room.  My parents were called.

In the operating room- prior to surgery, I lay there- very doped up already but aware of everything.   Stan was there.. but he was pacing the floor, back and forth… He was clearly very nervous and when the attending came in- he was the one who had the calm approach & said, “it’s ok.. we’ll take care of this and get you back to the ICU.”

The good news was that when I got out of surgery this time, it was without the lung tube thing.   No suction.   However, with 2 major surgeries in 2 days, my blood count was not where it needed to be.   I had to get a transfusion to help me recover.

On the following Monday, I woke up and saw everything in a shade of yellow.  I mentioned it to my ICU Doctors and they said that it appeared to be my liver… I was jaundiced.   After discussing what caused the jaundice, the conclusion was to wait it out and see if it goes away on its own.  If it does, then it was probably a reaction to a bad batch of blood.   

I began seeing my nurses from the floor I had been on- Anna, Elba, Kit, Kate, Mr. Reid – all of them came down to see how I was doing.   The jaundice did gradually resolve on its own and the big news was that my kidney function was rebounding big-time.  The urostomy was doing what it was supposed to do!  My heart also stabilized a bit and I was no longer losing lots of blood from the colon.  There was a clear shift in all of my lab results.

In all of this haze, one important conversation took place between me & my attending urologist.   I wanted to know what he saw when he was in there- was the cancer all gone?   His answer was that I had a lot of abnormal damaged tissue from the radiation.  His impression was that this tissue would not change or go back to normal in the near future.   The damage touched on much of my intestines- especially on the right side.  It included the bladder and the ureters too.    He left the bladder and unused lower colon in place so that there would be less scarring.  However, his  most important finding was:

There was no sign of any cancer from the original tumor.  I was cured.  I was exhausted and I was elated.  Now I could just focus on getting better.  No more anxiety on not knowing.  I had the answer that I had be searching for since June of 1986.

It was time for me to move back to the floor to continue my recovery & then eventually be discharged.

Back up on the floor, I had a good opportunity to take a look at these new features on my belly.  I wanted to understand them.   The hospital did not have a formal Wound Care Nurse or Ostomy Nurse at that time- so it was Anna, Kit & Kate who showed me how to do things.  

For the first change, I let them be the drivers in changing the appliances but I quickly took the reins and forced myself to learn.  The most frustrating one to change was the urostomy because it never stops running.   I was constant pee factory & finding a way to do the timing just right so that I could slap on an adhesive flange before another drip of urine came out took many failed attempts. 

For the colostomy- it was largely quiet.   Maybe a little gas but not much.   I had begun eating again but I was getting an early feeling of fullness.  All the anesthesia & pain meds had slowed things down.

As luck would have it- a few days after returning to the floor (in early August)- my birthday arrived.   The nurses knew me well.   1st Shift- brought a cake.   2nd Shift- brought another cake & 3rd Shift- brought another one.  Yep- 3 birthday cakes.   I was now 21 & could legally drink but had absolutely no desire to do so.  As the day went on though- my belly got more sore and more sore.   And I got less hungry. 

Things were not moving too well in my colon.   But late that day- it was like a switch was thrown.   The colostomy came to life & emptied quite completely into the pouch.  Once it started moving- the pain went down and my appetite increased.  

I returned to going up to the Patient Activity Room and playing pool- proving that I could still do the same things I could do prior to surgery.    I could shoot pool with the pouches, I could walk around the floors with the pouches.  They weren’t limiting me at all.

August 11th arrived and it was time for me to go home.   I was saying goodbye to my medical family- the nurses and aides on that floor who I had come to know and commiserate with.   They too were happy to see me doing well and they understood that I was on a mission to return to normal life.

My nurses had set up some home care nursing for me and I used them once or twice.  I didn’t need their help.  I was owning & changing my pouches on my own.  Learning how to take care of the ostomies was one of trial and error.  When the errors occurred, they were messy but at least they were at home. 

This Hospital Admission in the summer of 1988 helped me finally get the answers I had sought and it taught me so much about healthcare operations.   I had observed how Doctors and Nurses managed my care and I was an active participant (dare I say, an advocate) in my care.  I sought to understand how test & procedures impacted my health and I discouraged anyone who tried to generalize with statistics.  Most of all I wanted to insure we had a roadmap in my plan of care.  I think my Attending Urologist accomplished this & finally got me on stable health footing.

For me- the next steps were to resume a normal future.  My plans lay in tact- I was going to return to school on labor day weekend so that I could dive into my sophomore year at college.  I was only 114 pounds and had a lot of weight to gain back.

And the health story wasn’t over yet…

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