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.