I got two perfectly good forks at the end of my arms.
I finally got my feeding tube removed. It feels...surreal...not to have it anymore. Good, but strange.
I had the tube for five months. I used it exclusively for about four of those months to eat and drink. During radiation, I slowly started drinking more water by mouth (mostly for self-preservation, radiation makes your mouth dry as shit...or the desert...or winter in Ohio).
In December, I started trying more food by mouth, and my doctors encouraged me to eat a little before each tube feeding to take advantage of any hunger I was feeling, which admittedly wasn’t much. At some point in early January, I decided that if I could eat a little bit, I could just eat everything by mouth and skip the tube feeding altogether. After I made it two weeks without using the tube to eat, the goal I had to reach in order for my doctors to even think about taking the tube out (provided I hadn’t lost any weight), I was more than ready for it to come out. We finally got an appointment but I still wasn’t sure they’d agree to remove it. I was worried they’d want to do a consult first and make us come back, or tell me I couldn’t get it out because I weigh less than I did when I was last there in December.
To prepare, the day before the appointment, I told Joe he had to get on board with the following lies I was going to tell the doctor, because if he contradicted me, I was going to do a murder (of him). The lies were threefold and they were:
That I hadn’t used the tube for a month (this was almost the truth) for food.
That I hadn’t used the tube in two weeks for meds (I’d tested crushing meds in my food but after I discovered it worked, I continued to use the tube because it was more convenient)
That I hadn’t lost any weight, or if I had, it all happened right as I transitioned off the tube and my weight had been steady since. (This was mostly true, only I have lost a bit more weight because I’m sorry, I cannot eat the amount of food they want me to in a day unless they want me to barf, which seems counterproductive).
It turned out I needed none of the lies because the doctor said I was doing just fine.
When she originally came in, she asked if I remembered her and I stared at her blankly. Apparently, she’d come to my hospital room after surgery for a consult but I have zero memory of it (this is not uncommon). She didn’t seem offended, just asked me how I was doing as she motioned for me to lay on the exam table. I figured at that point, she just wanted to see how the tube looked and then she’d tell me when I could get it out. I was shocked when she took a quick look and then started explaining what would happen when she removed it.
“Wait,” I said. “Are you taking it out?”
“Yeah, is that OK?” she asked.
“Uhh, YES, I was afraid it wasn’t going to happen today!”
She explained a bit about how the tube was stuck in my stomach, which is more than anyone did when they put it in (...I mean, I think, I don’t really remember). Basically, the tube was being held in my stomach by a little bulb or mushroomy looking thing and she was going to have to pull that through my abdominal wall. She explained that it should collapse as it was coming through, but that it would hurt a lot, which I appreciated. Ever since the incident with trach-switch that felt like someone was stabbing me in the throat, I now ask very specific questions about the pain surrounding procedures. How long will the procedure take? How long will the pain last? Is it a sharp pain? Will it continue to hurt after? She was great and answered all of my questions, and offered to bring in a nurse so I could squeeze someone’s hand. I told her Joe was in the lobby, so she even waited in the hallway while I texted him to come down. (He said I didn’t squeeze his hand that hard, but I was still really glad he was there.)
She then got into position, grasped the tube, asked me to take a deep breath, and pulled. And, you guys, at first I was like, “oh, this isn’t so bad,” but then the little bulb-y thing got to the wall of my stomach or whatever and IT HURT A WHOLE LOT. She stopped for a moment, had me take another deep breath, and then pulled it out with a loud POP and a louder “FUCK” from me. She’d said that it would hurt after, and it did, but it was such a relief to have it out that I didn’t even care.
She covered the remaining small hole with gauze, told me to stay there and rest for a bit, and said I should be completely healed in two weeks. As I tried to relax, feeling a bit hysterical, actually, I just kept thinking...HOW?! There was a tube in my stomach for five months and suddenly two weeks after removal, I’ll just be POOF fine? I know I just did this whole process with the trach removal, but it seems like when there’s a hole in your body for that long, it should take longer to heal. Medicine is WILD.
As we left the hospital, I was practically skipping (which was much more comfortable without the tube). I was talking a mile a minute. I felt almost high (I told you I’d forgotten what being happy felt like). Then we got in the car, and I started texting people the good news, and the emotions hit me all at once. I made it to the stop sign right outside of the parking garage before I started sobbing and apologizing to Joe because I couldn’t pinpoint exactly why I was sobbing but it definitely felt like I was feeling every emotion ever invented.
The thing is, more so than the trach (which I only had as a precaution for most of the time I had it), this feeding tube kept me alive. There were a few days, right after my surgery, where I didn’t have the tube yet (because of my apparently weird anatomy, they had trouble placing it initially). During those days, if I hadn’t been so high and miserable, I probably would have been freaking out about the fact that I hadn’t had any food for so long. I remember being really hungry but I was preoccupied with other things. Later, one of my doctors would go over bloodwork history with me and point to that time and tell me that was when my body was starving. COOL.
Once they gave me the tube, I could eat again, even if it was unconventional. I couldn’t have gotten any food down my throat at that point, so it was such a relief to not have to worry about it during that time. Later, right before radiation, it started to get a little easier to eat, but the side effects from radiation soon made it difficult and unpleasant to eat anything. I honestly don’t know what I would done during that time without the tube. Things were hard enough without having to worry about how to get enough food into my body.
All of my tears dissipated by the time we got home, though there were enough of them that I was glad I’d put a box of tissues in the car months and months ago. (Thanks, Past!Jennie!) The rest of the day, I just felt...spent. Wrung out. Empty.
But not hungry. Nope. Not anymore.