Through the Tubes

We went to Mayo in early March and overall it was a good visit. My fistula by my esophagus is getting smaller and I no longer need to wear my gastric bag unless I have heartburn. I’m also allowed to start trying to drink without the vacuum. Eli was very pleased with the visit but I felt…numb. This happens to me anytime I receive a positive update related to my health. I just freeze. I think it just takes me a while to process everything and believe that I’m receiving good news. Since coming home I’ve tried drinking on my own. I have good days where I can drink a half glass of water and bad days where I just cough. I’m not sure why some days are better than others – chalk it up to another one of life’s mysteries I guess.

This week has been hard for me. I’ve cried a lot. Everything in this healing journey is hard. It’s hard to get through 5 cartons of tube feed a day. It’s hard to be hooked up to saline for an hour everyday so I stay hydrated. It’s hard to wear the tube feed backpack all day without my back aching. It’s hard to carry this “spit gun” that sucks all my excess saliva out of my mouth without getting funny looks from people. It’s hard to juggle so many doctor appointments. It’s hard to flush my stent 3+ times a day by drinking saline. And it’s hard to stay optimistic when everything feels exhausting. 

I know I’m on the right path and this will end one day. The question I keep asking is ‘when’?’. I’ve been on this journey since August 2025 and the months just keep passing by. I feel like I’m missing out on so much. Eli tells me what keeps him going is knowing that my life is no longer in danger; that we no longer have doctors talking about hospice or ‘just live out your days’. But in all honesty, I don’t feel like I’m living. I’m simply existing. I try to stay positive (optimistic) but lately it’s been challenging. I just need to master my mind to convince myself optimism doesn’t have to be tricky. It can just ‘be’.