Emerging From My Cancer Bubble

Having cancer is like living in a bubble. It’s sleep, wake, doctor’s appointments, repeat.  I’m not sure how people manage to work or have any semblance of a life while going through cancer treatment.  You’re operating under a new normal that doesn’t feel normal at all.  It changes you in ways you don’t expect, and fighting that change is futile.  It consumes your thoughts and your energy for anything other than treatment and recovery.  

I had tongue cancer - yep, tongue cancer!  First there was the surgery. With the miracles of modern medicine, they removed half of my tongue and reconstructed a new one with skin from my forearm.  I also had a neck incision to remove lymph nodes, which thankfully had no evidence of cancer.  I left the hospital after eight days with a feeding tube, a tracheostomy and other wounds from surgery that needed care.  The recovery was slow.  I had to attempt to re-learn simple things like talking, eating, and breathing.   I wanted to rush it.  I wanted to be able to eat and talk and do the things I normally would do. I was frustrated when my trach wasn’t ready to come out right away.  I hated that I would need to nap after simple tasks like taking a shower.  After eight weeks I started daily radiation and weekly chemotherapy infusions for six weeks.  Exhausting!  And then treatment was over.  It was time to begin the real healing. And let me tell you, it’s a marathon. 

I was lucky.  I am extremely grateful that my cancer was treatable and that I’m now cancer free.  I have a great support system at home, and I was able to simply focus on my treatment and recovery.    I am a positive person by nature and managed to keep my spirits up.  I really did rest and recuperate like a good patient because I knew that’s what my body needed.  And frankly, I didn’t have the energy for anything else.  But what comes next?  The closer I got to having to re-enter the world in any type of social capacity made me cringe.  I was hesitant to leave my house.  I didn’t want anyone to see me, especially in the beginning when I had the trach and significant neck and facial swelling. I didn’t want people to look at me or talk to me.  For weeks I only saw my medical team and my family. How do I face people with my newly impaired speech and my glaring scars?  I didn’t see myself when I looked in the mirror. I didn’t sound like myself when I talked. 

My first re-entry was a family trip to Hawaii (I know, first world problems!!).  I was still extremely sore from radiation, on pain meds, and needing to nap every day.  But I couldn’t have asked for a better place to rest.  It was beautiful and peaceful.  I dipped my toe into society again.  Other than my immediate family, everyone else I encountered were strangers.  I would never see them again, so the fact that I didn’t speak well and could barely turn my head didn’t really matter that much.  They didn’t know what I was supposed to look like and sound like.  

My next big venture out was a trip back “home” to see some more family and friends.  These are my people and I love them and missed them!  This trip was energizing. I was feeling more and more myself as each day passed. I needed this -  to be surrounded by people who didn’t care about my speech and my scars. They were simply happy to have me well. I was really able to enjoy myself and laugh out loud for the first time in a long time. 

Next came work.  I love what I do and truly missed it. Luckily I am an independent contractor so I didn’t have to worry about job security while I was getting healthy. I was feeling ready to re-engage with people in a professional capacity - but it also created considerable anxiety.  What if people can’t understand me?  What if they won’t trust my expertise because of my speech?  What if I’m not as effective?  What will people think?  I make my living by talking. How was this going to work?  But everyone has been so welcoming. I find that I’m listening more than talking right now, and that’s a good thing. I’m getting back to my networking group soon, which will be another step to building my capacity for work. And I’m writing again:)

You see, I am a social being by nature.  My spirit is fed by human interaction and I love to talk.  I could easily curl up in the darkness of my bedroom and avoid putting myself out there.  But that’s not who I am at my core. That part of me hasn’t changed.  So here I am - scars and all - venturing out of my bubble.