... 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.

Chemo vs. Radiation Round 1

Doctors throw a lot of information at you when you’re first diagnosed with any illness.  So I found that while I’d hear a lot of information in the office, I’d have to process it along with the information booklets and leaflets I’d been handed- at a later time.  Usually when sipping a cold soda on the back deck.  Or up in my room while listening to music.

An important note here is that every person’s experience with chemotherapy & radiation is different.  What I experienced was how my body reacted.   You could talk to 5 other patients also getting chemo or radiation and they’d describe to you different side effects that they were having.    I don’t want anyone to think that just because I had the side effects below (and ones that you’ll see in future blogs), it does not mean that every patient gets them.    We’re all different in how our bodies adapt to treatment.

The nurse was nice and explained that I’d be getting an IV and that they’d give me my chemotherapy through the IV.  I asked if I would feel anything and they said it depended on the drug.  Some drugs nothing at all, others I might sense some burning in the vein but I was assured it wasn’t that bad. 

Everything about chemotherapy seemed pretty straight forward.  They described nausea but I’d been nauseas before.  So I was not concerned about throwing up.   Everyone at the doctor’s office getting Chemo was talkative and seemed to be doing ok.  Losing my hair was not scary- I just saw it as a means to an end- being cured. 

The Chemotherapy:

I knew I was getting something called Adriamycin and that we would need to watch my heart after I’d been on treatment for a while.  The doctor assured me that at my age- I shouldn’t have any problem with it but he would start ordering tests to watch the heart performance under stress.   It’s under exercise that Adriamycin damage first shows up.

Then there was Cytoxan which my oncologist said is very powerful however I have to be sure that I drink a lot of fluids.  I needed to stay hydrated.  This particular drug can be tough on the bladder.

Methotrexate, I was told by one of the patients in the waiting room that this drug is actually used (and still is) for treating Rheumatoid Arthritis.  It has little or no side effects

Finally there was Vincristine- another potent drug but the oncologist indicated I’d have to watch for any tingling sensations in my hands or feet.  If it occurred, The Neuropathy (tingling) would impact my chemo schedule for this drug.

My chemo schedule would be dependent on my blood counts.  The combination of all these drugs, would bring my Red Cell Count, Platelets & White Cell Counts down.    My doctor said that we’d set the schedule up for the summer and then change it for the fall after I finished the second round of radiation.    He did say that I’d have to continue getting chemo for quite some time but he could not give an end date.

The overall strategy was to use the chemo to weaken the cancer cells.  Then –when they are at their weakest point (usually in the 1-2 week timeframe post chemo), hit them with high dose radiation which would further weaken them and kill them.    Not knowing medicine- it sounded plausible.   Not knowing the side effects I was about to get into, probably let me move forward with a little less apprehension.

The Radiation:

My radiation oncologist was unremarkable.  I mean- she did her job, read my films & planned (aka aimed) the treatment.    As with Chemo, nothing about radiation itself really freaked me out.  Everyone in the waiting room was pretty normal.  Some people were obviously sicker than others.  But nobody was screaming or coming back into the waiting room any differently than before they went in.  

The equipment wasn’t any different than a regular x-ray machine.  During my simulations on that equipment I was marked with little tattoos to help them aim.  It was a combination of x-rays, CT scans, and MRI’s that determined how they would aim the machine.   They assured me that they were taking every precaution and that this plate would be put into the machine above me with pieces of lead to block the x-rays from tissues they didn’t want to hit.   

They took my picture so they could identify me in the waiting room.   A tech remarked to me that my chart was different.   I was actually smiling in my picture.   Most others she had seen- were not smiling or were just a blank stare.    I dunno, I was always taught that when you’re in a picture- smile.

When I did have my first radiation treatment- the plate that they had developed… had a small triangle of lead on it… roughly covering a small area on my left side- maybe it was shielding my left kidney.  This reinforced the idea that I had a very large tumor… They were hitting the entire pelvis & about 75% of the abdomen with this radiation. 

In my case- the treatment was about a minute on each side (Front and back).  I later learned that the shorter the duration- they higher the dose of radiation they were using.   I was treated twice a day.  And the treatments had to be 6 hours apart.  

And so it began:

My first chemo dose was ok.  I think it was 6 or 8 fat syringes of the drugs above.   One of the drugs smelled kinda funny- like one of those permanent black magic markers crossed with Dr. Pepper.    It’s not that I would smell it from the Syringes they brought it in on… I’d smell it after it had been circulating in my veins. 

I got home fine with my parents and had a light dinner.  I remarked that my belly felt a little warm- to which my Dad said- oh that’s just in your head- they didn’t list that as one of the side effects.    Then- things went south… and progressively so.  I did throw up- first every hour, then every half hour, then every 15 minutes.  

I was up a good part of the night.   And every time I got sick- my Mom came running to hold the bowl.    And I wasn’t quiet about it.   This drove my brother & sister bananas because they could hear me every time I got sick.   I guess I had the habit of throwing my vocal cords into the mix when barfing.

Too alleviate the nausea, I had two options that my oncologist had given me.  First- there were compazine suppositories.  They didn’t work at all and just made me jittery.   However, the second option was flat Coca-Cola.   Sure enough this became my staple of what I could drink and not throw up after treatment. 

I will also say this- my first chemo was the absolute worst nausea-wise.  After that things weren’t as bad. After that first treatment- it wasn’t till 2-3 days later that my appetite started getting back to normal.  With time, after each progressive treatment, I found I could rebound faster.

A week after that first Chemo treatment- hair still intact, I started radiation.  It was a breeze.   They did say I might have side effects like nausea or cramps but it was really a non-event.   The challenge with radiation was that I had 6 hours to kill between the treatments.   Hanging out in the hospital was not going to be an option. 

I began having “2nd breakfasts” at local eateries.  My excuse was that my oncologist wanted me to watch my weight and to eat little meals even when I didn’t feel like eating.   He didn’t want me to lose much weight. 

Then I figured out that there were lots of movie theatres in the 20 block radius from the hospital and I could see a 12noon show and be back in time for my 2nd radiation treatment.

I saw lots of movies that summer- some that I probably would not have seen otherwise.   Up to that point, the most graphic or action movies I saw were either Star Wars or Indiana Jones.   Here I was being treated for a tumor with the word “Embryonal” in it and meanwhile I’m watching Sigourney Weaver battle it out in “Aliens” which as many of you know- includes an alien bursting forth from an individual’s belly.    Was there really THAT much blood in there?   I wonder if radiation would kill them?  

I thoroughly enjoyed the movie and the popcorn.   I saw every sequel after that.  I also took comfort in that during all my treatment- I never felt my tumor move inside me.

So this is how my summer began back in 1986.  It’s the tip of the ice berg.  As time went on- more side effects would show.   And when these side effects became more apparent, I’d go searching for those same leaflets & booklets that the oncologist had given me.   Luckily, my parents held on to everything.  I still have them today.

But aside from the side effects, I had a mental battle going on as well.  I’ll leave that topic- along with how I became “inspired’ to fight and live life normally- for my next blog post.


Originally posted on 3/23/2011 at http://www.rhabdomyosarcomainfo.com

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