... 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.

Getting into the Swing of Things

After Radiation finished in early September 1986, I settled into a routine of chemo, check-ups, and various tests.  Life for me became kind of cyclical with swings up and down on how I felt.   This was a routine that took some adjusting to get used to- especially when prior to cancer, I never had ups and downs all in the same month.   But the fall of 1986 strengthened my coping skills and made me accept the fact that everyone had a downturn emotionally- as a cancer patient, I just had deeper dives that were harder to climb out of.  

I learned to focus on things that made me feel good and in a nice coincidence; my oncologist wanted me to stop losing weight.   I had to eat.  So I had to have Carnation instant breakfasts as snack during the day.  I broke things into smaller meals which helped me force caloric intake.  I found that a big meal- I couldn’t finish.  But with more frequent smaller meals.  I did better.  Hey, it was fun to be a pig.

There were other perks to being on chemo.  Namely- no more shaving.  No more shampooing.  My Showers & bath time in the morning were cut in half.  Just hand me soap & a wash cloth.

But the fact remained that after the very busy summer- I longed for some vacation time again.    Me and my dad took off for Maine for a long weekend so we could close up the camp.   

The Summer feel of the camp was waning- nights were certainly colder and the blueberry fields had all been picked.  I had missed out on raking blue berries like I had for the prior 3 summers and as I walked up in the fields one morning; I came upon what can only be described as “a royal miss.”- A decent patch of blueberries.  It was in pretty good shape too- although many were very ripe and kind of mushy.  The first hard frost had not taken place yet but there had been a few nights down in the lower 40’s. 

So after talking to the farmer who I worked for in the prior summers, I was off to rake a bit.  His impression (and he was probably right) was that they were a little too ripe for picking.   But I wanted to feel the normal activity again- the elbow on my knee & the sound of the rake moving through the low bushes.   The view of the distant pine covered forests and the steady breeze cooling my efforts.   This is what I liked about blueberry raking.   Without a winnowing machine- I used the stronger than usual wind to separate the berries from the leaves in my rake as I poured them into the bucket.   I think I ended up with like 12 quarts of berries.   Most of which were well suited for blueberry pie but not for sprinkling on the cereal in the morning.

Returning home was bittersweet.   Maine was fun- but not like prior summers.  I had missed out for most of the summer.  I guess it got me in a funk and with that- another chemo treatment arrived and I was in one of my downturns emotionally.

Thank God for the 1986 Mets and their ability to make me feel better.  I had gradually become a fan of the team and the great season they were having.  The playoffs & World Series were something for me to look forward to and cheer for that was completely unrelated to cancer.   I loved the way they didn’t give up and that they found ways to win.   I was a casual sports observer who liked pumping his fist & clapping when a great play was made.  But I wasn’t gonna be decked out in Mets paraphernalia like a season ticket holder.

But watching Baseball was rather Solitary- in a Den with a TV.

I still wanted to get out now and then but I wanted it to be fun.  With my friends not around- it’s not like I could have a party by myself.   I chose the only outlet that I knew of- my former High School. 

I’d show up during normal hours to say hello.   Only I’d wear a neon green punk rock wig and I’d interrupt French class (or Russian class) with the statement- “Say, I think I’ve discovered a rather interesting side effect of radiation…” My former French teacher would smile and laugh- so would the class- some of which I knew from theater. 

While these visits to high school were fun for me- it was rather presumptuous of me to assume that a) interrupting students in class is appropriate and 2) that I somehow carried a special permission card that made it ok.    I think I needed another activity.

Leave it to my oncologist to shift my priorities.  Namely- I had to start an exercise program.

A what?

I was riding my bike to and from school every day during high school .  It’s not like I was out of shape before treatment.    I had strong legs.. I was eating carnation instant break-… oh wait a sec.   You mean I had to now BURN all these calories I was taking in?

The way my Doctor (and Larry) explained it to me- I had to stay in shape.  If I didn’t use the muscles, I’d lose muscles and with Chemo- it’s very important to maintain your muscle mass.   Chemo sends your body on a loop and you must regulate it with some sort of exercise.  

Larry was particularly passionate about the exercising.   He was convinced it had to be done and that it had helped him get through his treatment.   Every appointment I had- he wanted an update and gave me encouragement.   He’d suggest sit-ups, or push-ups or jumping jacks; anything that kept me moving.

I was ordered to start Jogging. 

So I did, first just around the block (which was like a half mile or so) but then gradually I’d increase it.    I didn’t do it every day.  I think I was doing it Monday, Wednesday, Friday with a bonus day on Saturday or Sunday.   I eventually got up to about a 4 mile run each day.   It’s most significant feature was this amazingly annoying hill at the end that had been driving me nuts when bicycled up it from High School and now with jogging it was just impossible. 

But I jogged it- very slowly but I jogged it.    As tough as it was- the jogging was helping me cope.  It got me outta the dumps and created little upswings in my mood.

As I jogged I grappled in my head with what I could plan out.   The oncologist wanted me strong so I could have my surgery in December to remove the rest of the tumor.   I wanted to be strong so that I could get to college finally in January.   I didn’t try to reconcile these two items.   My thought was surgery would be early December.

During the fall, I also took a trip up to school so I could meet the doctor that would be following me.   He and my oncologist knew each other and he was agreeable to continuing my chemotherapy while I was attending college full time.  This trip was another way of me exercising my independence and I told my parents to make the payment on tuition- I was going to school in January.

Eventually, we had to see how things were going.   The CT’s and MRI’s were ordered and the results came back.   Nothing in the lungs- however the rate at which the tumor shrank was much less than what my oncologist wanted.   It was about 33% of its original size and scarring had clearly begun from the first surgery as well as all the radiation.  It was harder to read the scans and determine what was what.    But my oncologist said it was time to see the surgeon and off we went.  

This time, we were fully prepared for the long wait.  The surgeon came in and indicated he had reviewed the scans.  Things looked much better than they did back in June.   He felt it was time to go in & try to remove the rest of the tumor.  The Surgery was going to take place in mid-December.  

It was kind of closer to January than I would like and my expected recovery would have me home in time for Christmas.  

This hospitalization was back before Managed Care took off in the United States and I was admitted on a Sunday with Surgery scheduled for Tuesday.   I had to get one last MRI on that Monday and basically hang out in the hospital room.  I had a roommate (which was new to me- I didn’t have one in my first surgery) and on my first night there he got some bad news from his doctor that his cancer had returned.  He was also told there was nothing they could do surgically to help him.   

Late on Monday afternoon- my surgeon arrives with all of his residents- I think there were 3 or 4 of them.    He did ask my roommate & his family to give us some privacy and leave the room for a bit.  It was nice that my doctor considered our privacy.

He came in and asked how I was doing.  I shared with him and my parents what my thoughts were on the special drink they had prescribed.   I had started the process of emptying my insides out by drinking an inappropriately named gallon of “GoLytely”.  I kid you not.  That was the name of the stuff.   And it was anything but.    My parents had been poking fun at me after they arrived with how many times I had to get up.   Or when I left the bathroom, only to turn around and go back in.

So after a brief chuckle by the group, we proceeded to the more important discussion.  It was time to talk about tomorrow.  My surgeon indicated that he’d reviewed my MRI and had noted that the tumor still appeared to be attached to my right hip bone.  He also felt that the only way I was going to beat this tumor was to remove the right pelvis and my right leg.    This tumor was quite adaptable and he didn’t want to leave anything to chance.

It’s difficult to find a singular word to describe how I felt at that moment. 

It was a feeling of being in total loss of control and having no way to stop what I knew was about to happen.  I lay back in bed and began crying- loudly and hard.    My Mom was crying and even my Dad was too- which is rather remarkable because he was not one to show this kind of emotion to anyone.

The surgeon continued by saying that while there was some scarring that was making the MRI harder to read, he acknowledged there was a small chance that he could do something called “Brachytherapy” where he injects the remaining tumor with radioactive seeds.  The seeds kind of look like pencil leads on an x-ray. 

I remember asking him about prosthetics and he said yes, that I’d be able to get a prosthetic leg after the scars had healed.   I would be seen & fitted for one that matched my height.   I remember asking him about college and he said that it probably would not be a good idea to plan on college till next fall.  January would be too soon. 

Here I had worked so hard at getting in shape and following treatments trying to make sure that this was an upswing moment.   To now be thrown this curve ball- I felt like I had struck out before getting to home plate to take my first pitch.  This was an abyss of despair, sadness and frustration.  And I didn’t know how to dig myself out of it.   

After my parents left to go home & break the news to my brother & sister, I did get some phone calls that evening from friends- checking in on how I was doing.  They were short conversations with me saying “I’ll get through it”, “yes, it was a big surprise” and “it sucks.” 

While watching TV aimlessly, a nurse came in from one of the clinical study groups.   She wanted to offer me the chance to be on a “pain control” study they were doing with Heroin.   Yep.  Heroin.  I looked at her like she was crazy.  I had just found out that I was going to lose my leg in the morning & they wanted me to try some drug a common addict would use?   Needless to say I declined.  

The following morning I was awoken by my nurse at 5am.  It was time for me to take a shower.  And I had to use this special iodine based soap on my right hip, pelvis & leg.  I took a long time with the shower and by that time I was emotionally drained of the night before.   There was no more crying at that moment- I was just going through the motions like an automaton. 

Then I was watching the clock- 6:15.. 6:20..6:25… no sign of my parents.

It was happening again.

7:00am rolls around and the gurney arrives to take me to the Operating Room and my parents are missing.   I was crying again… albeit tiredly… The orderlies were quiet and simply acknowledged my sadness.   There was no point in them saying “it’ll be ok”- they knew I was headed into major life changing surgery.

I was on the 16th floor- surgery was on 2.  It was a quiet ride down as I lay there sniffling.   As we exit the elevators and turn to go in the pre-surgery waiting area, I hear some commotion.   My parents and sister had shown up in the nick of time.  My sister was obviously sobbing and the hospital staff couldn’t let them follow me into the pre-surgery area.   My mom gave me a reassuring kiss on the forehead and said softly that they’d be seeing me after surgery.  In that period of what seemed like seconds I said my goodbyes to my family with two whole legs still on me.

The wait in pre-op was unremarkable.  I know they started my IV- they may have even slipped me something to calm my nerves but I can’t be sure.  My doctor came in and I remarked that they woke me up too dang early to wash my leg.  He seemed annoyed and muttered- they shouldn’t have done that.   He was right- they should have left that cleaning for the operating room.   They have to do it there anyways.   And before the anesthesiologist put me to sleep I just remarked to my doctor- “you do your best, I’ll do mine.”  And off to sleep I went.

And just like that with surgery- I woke up slowly… in recovery.

Not really feeling any emotions but knowing I had only one question on my mind.

I tried to wiggle my right toes.

Wait a sec, I felt something move!   I took my right hand and moved it to my side and touched my right leg thigh.   Tears swelled in my eyes.  Tears of joy, happiness, relief, and frickin elation!

And Sweet Jesus they remembered the warm blankets- I suddenly realized that I was very comfy- if not totally stoned.

The nurse saw that I was awake.  She explained that things went well.  I muttered that My right toes were moving & my right leg was there!  She acknowledged again that the surgery went very well and wanted to know if I had any pain.   No- no pain now.

It seems I’d gotten to home plate and taken that first pitch.  Only I didn’t watch the ball go by- I slammed it outta the park. 

My social worker showed up and said hello and I patted my right leg & said (in a very groggy, slurred manner) “They saved it”… and I was tearing again… and I could hear the happiness in her voice too as she said yes- they saved it.   They had put in some Iodine-125 seeds.   I had to keep my leg propped up at a certain position with pillow underneath it.

Seeing my parents back in my room- I said “hey look what I got!”  They too were greatly relieved.

As it turns out the damage to the right hip bone was not as deep as they had thought- so they had shaved it down a bit to remove any chance of cancer cells being on it.  They also peppered the remaining tumor with the Iodone-125 seeds.   Lots of them.   They were permanent and they have a half-life of about 60 days.   The idea was that as the remaining tumor shrank- the seeds would be drawn closer together and keep the dosing of radiation in the tumor itself at a constant rate.

I had to carry a card with me at all times and on that card it told me strictly not to allow any pregnant women to sit in my lap for the next few months.  To this day, I still haven’t found a good answer to why I’d want a pregnant woman to sit in my lap.   But it does make me chuckle.

I was discharged on 12/23/1986.  

For this Christmas, I had already received my Christmas present.  Nothing else mattered.  Not even the fact that college would not happen until the fall of the following year. 

This Christmas was a special upswing for me and even my family.   Maybe we felt we were turning a corner and that we could get this “cancer thing” behind us.    And for as dark and as lonely as I was the night before surgery- it was so satisfying to rocket to a summit in the groggy confines of post-op and find that I still had my right toes, knees, and hip.  I was going to savor this feeling for a while.

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