Recovery

For days, I begged my doctor, Dr. Linehan, to let me go home.  After 14 days in the hospital, I was finally being discharged.
My mother and father loaded my Dad's car up with all the balloons, flowers, cards, and gifts.  Then my mom pulled her car up to the front of the hospital, they wheeled me out in a wheelchair and I climbed inside.  Mom tried to drive so carefully, but the 40 minute car ride home was horrendous.  Every tiny bump hurt my abdomen so badly, causing me to cry.

Once home, I started to freak out (on the inside as to not upset my mother, but I'm sure she was having these same thoughts.)  I realized that I no longer had professional care.  When my pain became too bad, when I was nauseous, when I had questions, etc. I could no longer press a call button and have someone at my bedside in a matter of minutes to take care of the problem.  Yes, my mom was at my side within seconds of needing her, but we were confused.  Medical issues were far from our area of expertise.  Will we know what to do??  What if something goes wrong??  Hospitals makes things so much easier by administering medications directly to you at your bedside.
Thankfully, things went as well as they could without professional help there 24/7.

After two weeks of no abdomen use in the hospital, that same course of recovery continued at home.  I was not allowed to use my abdomen for the next 10 weeks.
I was also not allowed to lift anything over 5 pounds.  This was annoying for me because anytime I needed anything, even my laptop (they weren't made super thin back then), I would need to call for assistance.  A few times, my stubbornness took over and I refused to ask for help.  This resulted in a dropped laptop (and dented laptop) and excruciating pain.

Once home, I was finally allowed to eat normal table food.  However, my body couldn't consume a lot in one sitting since my stomach was now so small from the surgery that removed one-third of it and also from not eating for 2 weeks in the hospital.  For breakfast, Mom would make me a pancake, about the size of a half dollar.  Even that was too much.  It filled me too quickly.  Trying to eat and stretch my stomach out was painful and left me in tears everyday.  My mother would get frustrated (yet hide it well) because she knew it was important for me to eat and maintain my weight, but she also felt bad forcing me to do something that hurt me so badly.

Because I was still not eating much, we continued to use my feeding tube throughout the night.  Around 10pm, we'd clean it out, extract all the air from the tubing, and hook it up to my feeding tube.  We'd then pour two full cans of Boost or Ensure into the bag hung on my IV pole.  Over the course of the next 10-12 hours, the supplement would slowly enter my small intestine, providing me with nutrients needed to keep me alive, strong, and maintain my weight.  (Huge thanks to the American Cancer Society that provided one free case a month to cancer patients via the Hope Lodge!  It truly helped out budget!)

A side effect of the surgery was intense right shoulder pain.  At times, this pain was much more excruciating than my stomach pains.  We called the doctor numerous times over it and they proscribed more pain meds, but honestly, they didn't seem to help.  I was constantly screaming and crying out in pain.  There is a nerve that runs from your diaphragm to your shoulder, and it was a "related" pain I was experiencing   During surgery, things in my abdomen were shifted a little bit to perform the extraction of my tumor, part of my stomach, and part of my esophagus.  This was the cause of my shoulder pain.  By the end of the 10 weeks of recovery at home, it had gotten much better, but it didn't completely disappear until about 6 months out from surgery.  Even years later, I will still experience this pain every few months when I'm using my abdomen or have used it a lot that day.

Showering was a difficult task.  Because I could not bend over, I was not able to properly clean myself.  All modesty went out the window at this point.  I would get in the shower and wash my hair and upper body.  But when it came time to anything below my waist, I would need assistance.  I'd yell for my mom, turn the shower head away from the end of the shower, and she'd open the shower curtain and wash the rest of my body and shave my legs for me.  Mom of a Lifetime Award right there!!!  Thankfully, she was completely used to caring for me in this way because of the nurses lack of care in the hospital during recovery.

During my recovery, my anxiety became far worse than it was in the hospital.  At the hospital, I just wanted my mother around 24/7.  Thankfully, for her sake, that subsided.  But it was replaced by a tense, shaky body.  Part of it was due to withdrawal symptoms as I weaned myself off the pain medication, but the majority of it was anxiety.  I would lay in bed and watch the hours pass...midnight, 1am, 2am, 3am, and so on.  Many, many days my mother would sit up with me and I wouldn't fall asleep until about 6am.  I just sat there, shaking, nervous, and incredibly anxious.  Honestly, anxiety is hard to describe.  Because a lot of the time, it's not a physical thing.  It's a mental thing.  I just sat there freaking out.  My main physical symptom, weird as it was, was my hands.  I could NOT close them.  They were open, fingers as straight, tense, and locked as they could be.  I couldn't close them because if I did, I would FREAK OUT and start going crazy.
Many nights, around 4:30am, my mom would get out of bed, bundle me up (because it was about 20 degrees outside) and make me take a walk throughout the neighborhood.  She thought fresh air and getting out of my confined house would help.  Most of the time it did.  I would come back calmer and able to sleep.
I cannot thank my mother enough for those countless weeks where she sat up with me throughout the night.  Especially because she would have to work the next day (thank goodness she had a job that she worked from home!).  Looking back, I don't know how my mother didn't fall apart having to deal with me and function on so little sleep.  Sure, I functioned on little sleep, but all I did all day was lay around.  She had to work, make meals, clean, take care of me, etc.  She is a superhero for sure!

There is really no way to convey how difficult this time was for me.  I was in the worst pain of my life.  My doctor had warned me that this type of surgery is one of the most painful to recover from.  And that mine would be even more painful, and longer than average, because of the amount of muscle I had.  He informed me that muscle is not only more painful to repair, but it takes longer.  He then gave me (what I can now see as a compliment but didn't then) some bad news.  He had never seen anyone with the amount of abdominal muscles as I had.  He was shocked that there was no fat, but just lots and lots muscle.  While this sounds great on the surface, it meant that my recovery would be incredibly painful and take even longer.  Lucky me =/
And he was right.  Recovery was horrendous.  The pain from my stomach is unfathomable.  The pain from my shoulder was unmangeable.  I couldn't eat much and it hurt to do so.  I was anxious.  I was emotionally beaten.  I was so scared for my future...or wondering if I'd even have a future.
Everyone thinks I am so strong.  The truth is, I didn't possess this strength in the first 8 weeks at home.  I was far beyond weak.  As I said, I cannot begin to express the pain I was in.  It was so bad that I wanted to give up.  I wanted to die.  I told my mother that I couldn't take it anymore.  To just let me be.  To let me go.  That death would be far better than the pain I was experiencing. Looking back, I cannot imagine how hard this was for her to hear.  She grabbed my face in her hands and through tears said she would not allow for that to happen.  And she didn't.  She remained so incredibly strong for me when I was so incredibly weak.  SHE is the reason I am here today.  She wouldn't let me give up even when I wanted to leave this earth.

Around my 8th week at home, I went back to Dr. Linehan to get my feeding tube sewn back in (your body rejects foreign objects, so over the course of time, my body pushed the stitches out, until they ripped through the top layer of skin, leaving nothing holding my feeding tube in.)  While at my appointment, I mentioned how down and beaten I felt; the pain I was in.
He said something that completely changed my outlook on this all.
"You can't let it consume you.  The ones who don't make it are the ones who let it consume them and ruin their life."  It scared me.  But that's what I needed.  I decided right then and there to be strong.  I had to be.  I would not let cancer consume my thoughts and my life.  I refused to lose this battle.  I'd always heard "Attitude is half the battle" but I didn't TRULY understand it until now.  Looking back, he was exactly right.  My attitude, outlook, strength, and drive are definitely reasons why I am here today.