So let’s see, what’s today? May 14? Well, of course, new week, new problems. As you know, I had to have emergency surgery two weeks ago to replace my feeding tube. After a stellar job of surviving that, I thought I was in the clear for a while. Nope.Yesterday, I could feel something was wrong with this new feeding tube. So we call the nurse and she stops by the apartment to take a look. Yep, it’s very red, she agrees. She decides to take a photo and email it to my doctor. The doctor replies that the tube needs to be looked at so he will stop by my apartment “most likely the following day.” First of all, “most likely?” What kind of commitment is that? Secondly, “my apartment?” What planet am I on? Doctors don’t come to your apartment! That would just make too much sense.
So, I decided not to get all stressed out about it as I usually like to do. I decided to go to dinner with my friends and my daughter. We went to a cool lower East side of New York kind of restaurant in the seventh arrondissement. Caesar salad, French onion soup, escargot, omelettes, etc. We were having a great time. I casually told them that my feeding tube was bothering me a bit, and I showed them the picture. Everyone looked at the picture. My friend Debbie, her daughter and her parents. The consensus was that I needed to go to the hospital immediately. But wait! I am enjoying my after dinner drink and dessert and looking at the Eiffel Tower and laughing with my friends. When your friend’s mother tells you that you need to go to the hospital, you don’t disagree. So off we all go to the hospital. I made a quick call to the voice of reason in my family, and he immediately called my doctor on his cell phone! The doctor informed us that it was useless to go to the hospital this late and he was not available right now. He told us to go back to my apartment and wait for him to arrive in the morning. OMG.
Ilooked at him and burst out laughing through my tears. Then, he said, “I’m sorry, but you are. We have to replace the tube because you’ve gained weight and it is pushing the tube. I’m going to put in another tube with some slack in case you get fatter.” My laughter is uncontrollable at this point. The only only only good part about this whole ordeal is that I’m fat. Do you know why? Because fat people don’t get ALS. It means that I could be getting better. Here’s why… No one gains weight with ALS. It’s a slow demise over a couple of years where you literally turn into a skeleton. Not me. My husband and my caregivers make it the utmost importance that I eat and gain weight. In addition to my specialized super healthy feeding tube formula, I eat every fatty thing a girl can imagine. Beef bourguignon, cheese, butter, éclairs, crème fraîche, potato Dauphinoise, Indian butter chicken, lasagna, enchiladas, ice cream, sauces, Nutella crepes, cheese crepes, foie gras, and every evening I have about 400 gummy bears. Every doctor that I’ve been to has stressed that gaining weight is the key to survival. For the past three years, it’s been difficult, but since I’ve been living in Paris, my weight has skyrocketed. Don’t get the wrong picture though… I am still a size 2, thank you very much. It’s just that my weight gain is a dramatic improvement from a size -0.
So, good news, bad news, right? Now I have two days to stress out about my upcoming tube replacement. Mr. Wonderful said he will do the procedure in my apartment with his nurse. What? You might be taking this in-house service a little too far, Doctor. Don’t I need to go to a hospital for this? “Mais,non,” he says. It can be done easily, quickly and without pain. Yeah, right, that’s what they all say… Stay tuned.