Feeding tubes are weird. It's like a long, flexible straw right into your stomach. Four times a day I have to flush it with a big syringe full of water, then pour the super-formula in, and then flush with more water. Instant meal! I also need to add two more syringes of water, twice more a day, in order to stay hydrated. Pain medication also goes right through the tube. Instant injection. And that helps because the tube site is sore as hell, but I guess that's normal when they, you know, cut a hole in your stomach and put a tube in.
I took a shower yesterday for the first time since Friday (don't judge me!) and that was an interesting ordeal. You have to use one hand to hold the length of tubing so it doesn't put strain on the site, or worse, get yanked out, and yet there are things you need two hands for [keep it PG! ;)], like holding the soap in one hand, and washing your other arm. And trying to dry yourself off with one hand, while holding the tube out of the way, is like arm wrestling a gorilla with a snorkeling flipper on your hand. But I did it. Level up!
There's also an adjustment period in getting used to the direct nutrient feed to the stomach. The level of caloric intake, and the speed in which you allow it to go through the tube, can make you really nauseous and crampy and generally uncomfortable. Yesterday afternoon, after doing one of the denser feedings (more calories), I felt super nauseous and had to go lay down for a couple of hours and laying down is also a challenge because 1) it's super painful to do anything that requires your core muscles (like getting into or out of bed) and 2) you can only get so comfortable because there is a tube protruding from your stomach. They did give me anti-nausea medication and the nutritionist has since given us some more pointers.
But, we'll get used to it all. Spoke with the oncologist this morning and we'll be visited by three calls this week - it's like a cancer Christmas Carol: radiation (to initiate that process. I know it's not likely, but I'm hoping they inject me with enough Gamma rays that I become
the Incredible Hulk!!), radiology (to biopsy the cancer in my lymph nodes - which is the most worrisome, he said), and his office to start the chemotherapy treatment (there's a class I have to attend first before we just jump in).
I know many of you have asked how you can help and while I feel awkward putting this here, I know we can use the help navigating the already mounting medical bills and financial pressure. Jess's awesome sister, Becca, put together a Go Fund Me for us (and she did such a nice write-up about us and our situation). There's absolutely no expectation or pressure, and if you're unable to do anything at this time, please just consider sharing it. Even passing it along would be a big help. For those who have donated, thank you so much. We are beyond grateful for your generosity.
I read all of your comments and messages and feel super loved by you all. You being here with me and Jess as we stumble forward is like having a life raft, and not a floating board (that inexplicably can only support one person), when the Titanic went down.
Side note: James Cameron vehemently defends his one board/one person decision and you can read about that here. What's your thought on that scene? Post in the comments!
