We slept in this morning, I mean really slept in — ’till like, 10am! I woke up to our HemOnc docs telling us the plan for the weekend, so some the details are a little foggy. Basically all of his meds are oral with the exception of one anti fungal and the frickin‘ tube food. Chemo isn’t due for another week and that is just a spinal.
The underlying theme/vibe/phrase was; ‘When you go/get home…” I loved how it casually rolled of their tongues; ‘At home you can…,’ , ‘When you get home…’, or ‘We will talk more about going home…’. The big topic was nutrition — Johnny’s least favorite hospital topic right after PT. Whenever we get home, Johnny still might be on tube food. Of course we don’t have an IV pole sitting around the house, so they have this nifty little backpack he would wear 8-12 hours a day — full of tube food. Oh goody. To avoid this from becoming a reality, he needs to eat real food — the nutritionist said anything from gummy bears to steak and baked potatoes loaded with butter.
Here’s the catch, his body thinks it’s full because of tube food 24/7. The natural reaction would be, ‘Take him off that crap’, right? It’s not that simple. The anti fungals (most notably, ampho) not only eat up fungus, it also gobbles up just about every nutrient you need to function, like potassium, sodium, calcium, albumin, to critical levels that can’t easily be fixed by a vitamin or a few bananas. Everyone knows that chemo messes with your taste buds — so does the ampho. He doesn’t feel like eating because his body thinks it full, when he finally does eat, everything tastes like sour metal.
Once the docs left I was all over Johnny about eating — ‘What sounds good, what can I get, what can I make…’ His answer is always ‘nothing’, so I started pushing him hard. Which I knew was the wrong thing to do, but I really feel like we are so close to leaving, and didn’t want to mess it up because of stupid tube food. Just eat, damn it! How hard can it be? I really upset him — Mike noticed and asked for Sophie and I to leave the room. They talked and Johnny promised Mike that he would at least try one bite of everything we bring him — because some food he didn’t like before might taste better now. Mike got through to him and then had a little talk with me.
I stopped obsessing and talking about food and quickly jumped on the PT-train-to-nowhere. If Johnny got up and walked around a little, he would burn a few calories which might make him hungry! See how clever I am? – knocking two tasks out at once. Clever yet so transparent… Johnny shot me the hairy eye along with a few other ’signs’ that I won’t repeat. We are a lot alike in that, if you push him/me to do anything, even if it’s something we like/love — we shut down, refuse to do it — suddenly it’s the worst thing in the world. …And I know this, yet I still push…
Today a friend of ours had a big lunch, provided by other cancer families, up on the 16th floor. It was in the ‘teen room’ which meant there would be arcade games, music, foose ball and other fun activities. WHO WOULDN’T WANT TO GO, RIGHT? Johnny refused until a couple girls that were helping with lunch on 16, knocked on our door asking him to join them. Only then would Johnny get out of bed — oh, sure — for a few hot teenage girls he’ll do it….
On 16 there were tons of families, food and fun — none of which Johnny wanted to fraternize with. I sat him down at an arcade game for a while so I could at least talk to a few people. Once his tube food drip started beeping we headed back down to our room. When we got back to the room, amazingly, he didn’t jump back into bed, but walked over to the window and started chatting with me. Mike and Sophie left for the house about noon so it was the two of us most of the day — we talked, played games (he’s been kicking my ass at Uno the past two days!) and had great afternoon together.
Johnny ate 3 meals (gummy bears and chicken nuggets count) and walked to 16 without a wheelchair — the first time he’s done that since we’ve been here! Don’t worry, I didn’t make him take the stairs — I let him use the elevator – I’m not that mean… Even though we started the day on a sour note with tough love, I think it ended nicely and this might be a real turning point for all of us!