So second round is done. Finished it last Friday. It is very exhausting being at the hospital for 5 days. I feel very limited. I feel like I'm stuck, chained to a wall. Of course I can discounted this fluid giving machine from the wall, and walk around. The machine has a 5 hour long battery. But still, I feel stuck. Nothing has gone wrong so far, so I feel like there should be away to get this chemo drugs on the go. I guess perhaps because I'm young, I haven't suffered much side effects. One side effect I do get is constipation which goes away nicely after 2 days at home. That side effect, at least, tells me that I got one thing that is working very well, and is extremely healthy as of now at least, that is my digestive system. It is nice to have a well working digestive system because - sorry for the too much information - I love having a good number two.
Another side effect that I noticed is while I'm in the hospital there aren't much food I feel like eating. My taste buds are hypersensitive. For example the only avocados that I can eat are the small ones that come in a net bag. It get's better 2-3 days after I finished my chemo round. Since yesterday I've been hungry a lot. I will eat something, and after 3 hours I will start feeling hungry again. It is annoying because I want to watch TV, read a book, maybe teach myself something, and those are hard to do when I'm hungry.
I used to eat a lot. Just 2-3 years ago I would stuffed myself, chug everything down, big steaks, burgers, appetizer before, finish all the sides, and cannot skip on some hot lava cake to top it off. Since then though I started eating differently. You could say I eat more meals, but smaller ones. I don't like getting stuffed, and feeling like you feel when you shouldn't have eaten those few extra bites. Today I know where is that moment, I can control myself, and I just stop. "I enjoyed half it, I'm happy, do I really need the other half right now at this moment or am I satisfied?" That's pretty much the, by now, automatic thinking the goes on while I'm getting to that point of no return. It seems like more often than not I would take home a box with leftovers. It could be as much as half my dish. I see it also as a good way of saving money. I now have lunch for tomorrow. This meal I'm paying for is actually for two meals. I would even sometimes take a box even though what's left on my plate is less than 5 bites. Most people would just finished the plate, and then they get stuffed. I see it as a small snack I will have later. Now, with chemotherapy, and me losing weight (I'm at 59kg which is probably the lowest I weighed in over 10 years), I have to go back to that old Ilan. My friends used to say I have a hollow leg. That was after a night we went up to San Francisco, and I was eating everything in reach. It is kind of nice though, I HAVE to eat fattening foods with tons of calories.
It's hard having you life on hold. That's what it feels like right now. There aren't many things I can do. Cannot really work because I need two weeks off every two weeks. Cannot go to school pretty much same reasons, I will miss lectures, quizzes, tests, papers' due dates. There are things I can do to pass time, but life just feels on hold for me right now. It kind of takes away your energy and motivation to actually start some project. I need to find a way to push myself more. To just do.
Next week I'm having a CT scan. It will show if and how much the chemotherapy has reduced the malignant parts of the tumors.
Quick reminder, if you have some extra change, or if you are rich, or if you know anyone who is please help me with my fundraiser: http://ctf.kintera.org/nfwalksanjose2012/ilan. THANK YOU!!!
Also if you are in San Jose on June 16, please come enjoy a nice sunny morning, and a short walk with my NF family and I. We are trying to raise awareness for Neurofibromatosis. Don't take this lightly, your participation is greatly appreciated. Every single extra walker out there DOES make a difference. HUGE difference. Join my team here: http://ctf.kintera.org/nfwalksanjose2012/ilanoflife.
Thanks again for reading, and supporting,
I now have a Facebook page, please like and share https://www.facebook.com/ilanoflife thanks.