Summer of Surprises

For the third week now, I am settled in my recliner tethered to my TPN.  It’s a 16 hour infusion, most of which will occur over night.  I’m hooked up from 6:00 p.m. To 10:00 a.m..  I can move about the house with the backpack, but it’s cumbersome.  It’s almost dinner time for my husband.  I smell steak on the grill.  Yum.  Sometimes I sit at the table with him, but seeing and smelling the food I can’t have is a little torturous so I often stay in the den with a cup of green tea or broth.  It makes him feel bad too.  I’m really missing food!  I’m so lucky my husband is so self-sufficient.  He’s not a gourmet cook, but he can follow simple recipes and create tasty meals.  He’s also a grill master, so there’s that.

A short time after my surgery  and 10 day unplanned vacation extension spent in Sarasota General Hospital, I experienced something very foreign and alarming to me.  A fistula, from my intestine out through my tummy at the incision line.  I never dreamed of my intestine tunneling through my skin and opening.   A not uncommon surgical complication, I’m told.   I spent 5 days on TPN in the hospital to rest the intestines and it looked like it had healed over.  I came home on a soft diet but it opened right back up.  I then began managing it with an ostomy appliance.  What a nightmare that is!  A couple of weeks after that, a second fistula opened an inch or two above the original.  I went to the ER and back in the hospital.  Started TPN, no food or drink by mouth, came home with TPN  and I am allowed clear liquids.  The second fistula has healed over and the original looks like it’s trying to, but still open.  I’ve read that it can take 4 to 6 weeks on TPN for a fistula to heal. Ugh.  That’s a long time not to chew on something.  My weight is pretty low, but TPN is keeping my nutrition levels up.  Energy is a problem. I wonder sometimes if  I’m just getting lazy because I’ve been so sick and in and out of the hospital so often the last couple of months.  I don’t want this to be my new normal lifestyle.  I’ve gotten out around town a little but still feel like a bit of a shut-in.  In summary, I’ve had 2 abdominal surgeries followed by 2 more hospitalizations since March.  It has not been a good spring and summer.

I went to the Hobby Lobby today and stocked up on art supplies for my online drawing class I signed up for.  Now that I’m $100 in, I’d better start those classes!  I’m hoping to discover some deeply buried talent and a hobby to allow me to be quietly creative.  The idea came to me when I realized my old past-times of long, fast walks and tennis may be a ways off, if I ever can do those again.  I found myself wishing I could walk the 4 mile circuit of the local park and wishing I was playing competitive, or even bad, tennis.  I may get there, but for now just wishing is stupid, so it’s time to explore other hobby options.

These complications of my cancer I could’ve never dreamed of when I started this journey.  The ups and downs are extreme.  More than once now, I’ve believed that I was spiraling toward the end.  I’ve been told that, actually, by my surgeon who I’ve decided is a bit of an ass.  Then I seem to recover and feel like I still have fight in me and a chance to reclaim my life.  That’s where I am right now.  The TPN is temporary (as far as I’m concerned) and I will resume a relatively normal lifestyle soon.

 

 

About clamberton

I'm wife, mother of two, former IT professional and survivor of ovarian cancer living in Atlanta GA. I've started this blog to share inspiration and sometimes maybe true gut emotion as I travel the cancer road. My hope is to make cancer a less mysterious and lonely place for others travelling this road and their caregivers.
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One Response to Summer of Surprises

  1. Judie Paxton says:

    I am anxious to hear how the art classes go. I hope you find a new passion to get excited about. I am glad you sent me the link to this blog. I care about you and your journey!

    Like

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