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.

On Auto-Pilot

Before I start today’s blog, I just want to preface it by saying that this is the point in the story where things get a bit graphic.   For example- I use some form of the word “bleed” 16 times in this entry.  It also refers to multiple organs including the bladder, kidneys & colon.   My original goal continues to be to tell my story- what happened, the good and the bad… And in many cases much of what I’m sharing below is stuff that only my doctors and immediate family would know.    I can re-assure you.. it does have a happy ending… I’m very much alive & living my life fully today.  However, the period from late 1987 to mid-1989 was challenging for me on multiple physical and emotional levels.  

 

On Auto-pilot…

In the fall of 1987, the news that my kidneys were not doing well hit me hard.    There were anxious and emotional phone calls to family members as I shared my fears & frustrations.   But then, I reminded myself that I had an education to complete.  So I would have to manage coping in the only way I could at that moment.

I felt like a switch had been thrown and my emotions had been turned off.   There was no overwhelming joy or sadness- just a “being.”  I was going through day to day activities as if they were tasks and not activities- doing what I was required to do without trying to do anything more.  I ate, I slept, I studied.   I withdrew.

Classes kept my mind busy focusing on “non-cancer” thoughts.  Assignments were good- as long as I didn’t have to read.    I can’t explain why or how, but since I had chemo I’ve lost all interest in reading.  Before it- during the summers or for school, I’d read lots of books.  With chemo, I just didn’t have the patience for it.  Studying was a challenge- since I had to read to understand & learn.

And what of my roommate?

Well, he spent his time... all of it... between classes and his girlfriend’s place.    I had a double room basically to myself.  David would come by once in a while but not often.  The phone was in my name so I paid the bills & let him know his share.  He was always good at making sure I got reimbursed.   

I didn’t have that roommate to hang out with but I wasn’t going to just sit around staring at the ceiling. I ended up amusing myself with a computer game or two.  Listening to music...

After meeting an urologist- he indicated that he wanted to put some J-stents into my ureters to keep them open.   There were no incisions needed and it was a pretty quick procedure.    They would help my kidneys function more normally.   The urologist did indicate that the right kidney was probably worse off than the left and we’d have to watch it closely to see how it recovers.

Now the thought did cross my mind when this came up about whether I should do it here or whether I Should return to my main hospital in New York City and do it.   My thought was- since it was not major surgery.  It could be done here- near school.    My parents agreed.

I did have to stop chemo for this procedure to be done.  My oncologist in NYC was not too happy about that.   But (and this is why the doctor I had near school was so fantastic), the hematologist did not feel comfortable proceeding & risk jeopardizing more kidney function.  Hence Chemo must wait.  He put his foot down.   Hale-frickin-leuia.    

My parents did make it up to see me for the surgery.  It went as planned- no problems.  They did get to meet the Hematologist who they both agreed- presented things clearly & had a great bedside manner.  They were glad that someone was finally looking at what was going on in the “bigger picture” of my health.  Managing the whole patient and not just one complication.

Speaking of which, J-stents created a few issues for me.   One- they could plug up.  And when that happened- my kidneys hurt.  The only way to fix it was to replace the stent, which happened one more time in November before returning home for thanksgiving break.   The replacement procedure is a quick process but again- required anesthesia and *ahem* NO incisions.   The second complication was that they irritated my bladder and actually increased the bladder bleeding.   This made me drink more water daily- because the theory was by drinking more fluids I would bleed less.

Except for my colon- which had its own schedule with bleeding as well and even with the lackluster quality of the dining hall food- the colon just wasn’t working the way it should.  Laxatives were tried but the bleeding continued.  I would have tests and everything would come back “negative”- no cancer... but I had some radiation damage- they called it radiation proctitis.    Basically instead of bleeding from a single spot in the intestine... it was like my intestine was a sponge and when it bled, it bled from everywhere- the way water leaves a sponge when you squeeze it.    I was prescribed the standard treatment- steroid enemas.

It became no surprise that my blood counts began to slip.  The blood loss was beginning to add up and that combined with the fact that my hips had been showered with high dose radiation (the hips are one of the main areas for producing red blood cells), it added to my overall decline.  I started a “My daily Pulse” log in which I took my pulse every morning right after I awoke to see where it’s at.  I wrote it down on a piece of paper that I taped to my closet door.   I’d report these statistics to my doctor… and it revealed a nice pattern.. As my pulse rose, my blood counts were dropping.. We found that once I crossed the 75-80 beats per minute threshold at rest- that it was also true that the blood counts showed that I needed a transfusion.  

Not to add insult to injury but my bladder also began “forgetting” on what it meant to hold things in at night.… I started wetting the bed…  I resigned myself to diapers at night which helped a lot but weren’t 100% foolproof.    I was actually kind of glad that I had signed up for the linen service & I got new sheets each week. 

In some ways, the fact that my roommate David was MIA was a good thing.  After all, would you want to spend time with a diaper wearing, anemic, steroid infused cancer survivor with appetite issues?     I didn’t think so.  :)

Starting in November though, David started spending more time around the room.   He broke the news to me that he’d be leaving school & returning home.  He wasn’t sure that this school was the right one for him.   It also meant that he was breaking up with his girlfriend- which fortunately I missed.  It happened during thanksgiving break and involved her wailing & banging on our room door for about an hour.  ‘Nuff Said.

David’s problems with his girlfriend seemed not that important.   For me, I found my attention focused on every pain, every little bit of bleeding- my mind raced and raced thinking “what if my tumor is spreading?”  I was feeling kind of bummed out and I’d follow the advice that my social worker had given me early on in treatment.  

When I was feeling down- go out and try something new or something that I haven’t done in a long time.   It was a simple walk in a park or window shopping along nearby streets.   Other times it was a small lunch someplace nearby or going and buying some groceries so I could make a nice snack.  Or playing video games in the student center.

Thanksgiving came & I took the entire week off.  I needed the rest and even though I missed a few days of classes- it helped me to be home & to be taken care of.  Seems with all my longing for independence, there was still nothing like mom’s French toast and a familiar place to relax.

On Thanksgiving, we went to see my Grandmother and Relatives as we normally did down in Philadelphia.   During this trip I didn’t drink as much water as I normally was because I was in the car; no telling when I’d get to bathroom.   By the time we got home that evening, I was passing blood clots.   Big ones.    The bleeding had increased dramatically.

On Thanksgiving Night- my bladder clotted shut for the first time.   I was in a panic.  I had to go to the bathroom and I couldn’t.  I had increased my drinking when we got home (to catch up) and realized that I had no choice but to go to an emergency room.    We got there and they inserted a catheter.  They pumped it with fluid and pulled the clot out… It was a long night.    The doctor’s remarked that I had a lot of bleeding and that my case was a bit complicated due to the different things going on.   However, our biggest problem was that nobody could offer a solution.   I wanted someone to say “take this pill and it will all get better”.  They just referred me back to my oncologist for further follow-up.

The Friday after Thanksgiving was when I saw Larry for the last time.  It was a short appointment but my oncologist indicated he wanted to shift me to a new drug.  We had to stop the adriamyacin and put me on Dactinomyacin.   Apparently it did well against this tumor.

And what of the tumor?   No changes.  Scans were very hard to read now but still showed what he felt was residual tumor in my abdomen/pelvis. 

When do we know it’s gone? 

Don’t know. 

When will we stop? 

Don’t know. 

My frustration (and my family’s frustration) with the NYC oncologist was growing.   He wanted to keep going on treatment but was never willing to say “yes, I think we’re finished.”  He didn’t appear to have a plan that pointed towards a finish line. 

Back at school for December, timing was everything.  Two treatments of chemo- with one of them smack dab in the middle of finals week.  I did have to have one of the j-stents replaced again- it was a simple overnight stay but the bleeding in the bladder continued.   And another blood transfusion.

I think by this time, my college had realized that me staying at the student health center after chemo was a bit much for them.   I got a letter from Medical Director of the Health Center where I’d been spending my post-chemo nights indicating that this practice would have to stop.  They did not consider themselves an acute care facility. 

It angered me… and frightened me.   I was definitely not as healthy as I was when I arrived in September.  I didn’t feel comfortable spending the “chemo night” in my dorm room- especially since I would doze off and stop drinking… And stop drinking meant more blood clots… and more blood clots meant… well, you get the picture.  

I was trying to take care of myself in a manner that would decrease the risk of complications.   The school didn’t want to be part of that.    And given my health status at that point- I can see why they had to make the decision to say “stop using our health center for overnight recovery”.  They were not really a hospital.   And a hospital was kind of what I needed.

Finally home for Christmas and I tried to celebrate it as much as I could.  I went to see the Surgeon (from December 1986) and we were hoping to get his opinion on what could be done.    He had no immediate solution on the bleeding issues- although he did say surgery may become necessary if the bleeding persists.   He looked at the recent scans and even with all of his years of experience- he could only say- “it looks good, nothing has grown for well over 9 months.  It’s a good sign but it’s up to your oncologist to make the decision on when to stop treatment.”

Again- people would defer to the oncologist but it became very apparent that the oncologist was not doing a great job communicating with all the other doctor’s involved in my care.   Frustration was mounting

And as luck would have it- while I was there seeing the surgeon.  My bladder clotted shut again.   The surgeon was quick and referred me up to urology.  They saw me & indicated that they would have to perform a cystoscopy to take a look at the bladder and get the clot out- But without anesthesia.  

This was the one and only time I ever had this done without anesthesia.  

How do I say this creatively? 

I know- “The radiation damage had created scarring and narrowing on all entrances and exits of the bladder.”  

The procedure was very painful & I was hollering at the top of my lungs as my Mom waited outside in the waiting room.    They got the clot out- they had given me several pain meds to make me more comfortable… and I was for the time being.   This was an oddball way to be introduced to an Urologist who would become one of the key players in managing my recovery.

His approach to communication was direct and to the point.  He didn’t sugar coat anything and best of all he didn’t spend time quoting statistics.   You don’t 60% survive something… you either do or you don’t.

We went home and I continued resting.  New Years Eve arrived.

Guess what?  I clotted shut again... Only now- knowing how painful this thing was becoming, I was terrified of going anyplace.  And this time, the bleed was very bad.  The doctors at the local emergency room didn’t know what to do.  They wanted to speak to the doctor’s in NYC.  They couldn’t reach them.  Finally the surgeon called the ED back and my Dad was nearby when the call came in.  He was angry and yelling.   This needed to be addressed, nobody is helping us and my medical issues were too complex for the local hospital to handle.  What were we to do?   All of our frustrations were being released in an angry tear ridden rage. 

An ambulance took me into NYC that night- sirens and all.   I finally met the urologist under less stressful conditions and asked him what could be done?    He wanted to approach this conservatively- so he worked on “rinsing” my bladder in an effort to help the bladder stop bleeding.  There was a possibility that this was a “phase” of side effects and that eventually things would get better.   I was put on strict bed rest with an irrigation of my bladder running constantly.  It worked!   What a relief.  We had found a doctor who could manage one of my complications.

This was also the first time that I was introduced to the Urology floor of the hospital.   Little did I know at that point on how much I would learn of this floor’s staff.     There was Elba, who came in every morning humming a tune that softened the air.  She had an accent from someplace in the Caribbean- but I honestly couldn’t tell you where and her melodies just made things seem easier.   She’d tidy things up and then ask me when I was going to get up and get washed up.   She then made sure all the towels & soaps  were ready to go so that while I was in the bathroom, she was making the bed. 

Then there was Mr. Reid- who I assumed had to be in his 50’s or so.   He had a good sense of humor and didn’t just come by why I rang my nurse call bell.  He was the type of nurse that when not doing documentation, he was walking the floor and checking on patients.  Helping out wherever he could. 

Anna, Kit, Kate and countless others traded duties covering my care.   Anna was particularly fun because her laugh was infectious.  I liked this group of people because I could talk with them, crack jokes.  They made the miserable experience of being in a hospital change into a less miserable experience with a focus on when will I go home. 

Most importantly, they took care of all of me- they were aware that I had lots of other issues going on with longer term complications.

However, to me & my parents, the oncologist was the one who increasingly seemed out of sync with the rest of my physicians.  I can’t be sure if it was politics or just poor communication.   He seemed only focused on one thing- chemo must continue.   And with that being his strategy, I exercised my right to demand certain things in my care.  We could do chemotherapy- only if I was in a hospital bed overnight with an IV. 

Shortly before returning to school for the spring semester, I was admitted to another hospital and as it turns out, it was the only time I’d ever go to it.   I had my chemo and I was introduced to a great drug  that helped manage the side effects of chemo.  Ativan.  Why oh Why had I not been introduced to this earlier?     I loved it. 

It was early 1988 and I was returning to school for second semester.   College helped me continue my “autopilot”- coping with the day to day fatigue and lack of any tangible goal health wise.   I had been back on campus for a few days- about 1 week out from the chemo in the hospital. 

The bladder bleeding started again…

 

 

And this concludes today’s blog entry… :)   Yes, It’s another cliff hanger.

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