So I posted about this a little earlier, but didn't go into much detail because I was afraid I was bugging the other folks in the teen room on computers. Now the interwebs are up and (slowly, beggars can't be choosers!) running.
Yes, yesterday sucked nuts. You know what? Today didn't. In fact, today was pretty awesome. And I don't remember much of yesterday other than being sleepy and very sick, so for that I am thankful. Honestly, The illness from Gleevec was much worse than my rainbow yawns yesterday and the flu like feeling was no worse than a bad flu that any person could get. Gleevec for me? Think hours curled up around the porcelain throne singin' until the sun comes up, sick. Every night. Tasigna? All of my muscles seized and I had a full body rash that looked mighty gross and felt like I just wanted to rip my skin off. And those effects went on for days and months at a time. Look, I'm not trying to sugar coat chemo. It fucking blows and it's different for everyone and every disease. What I'm saying is that I'm keeping this in perspective. There are better, and probably worse days ahead. But IN THIS MOMENT things are good. Yeah, I was annoyed that the physical therapist pulled me out of bed, drunk as a skunk on Dilatin, to walk timed laps, but I felt a hell of a lot better after doing those laps! Yep, it's really bloody annoying not to have fresh fruits or veggies, even just lettuce on a sandwich, but you know what? It's only a few weeks and then I can spend the rest of my life eating just raw food if I want to.
This brings me to the food issues that I've touched on a few times here. Going in to this process, I made a promise to myself that I would stay as active as I could and would refuse to eat only 'junk' food. Well, just like everything else in this world, standards and norms change and we must adjust to the new reality. Active for me before this week was four or five yoga classes a week, walking where ever I needed to go and eating a very healthy diet of local produce, clean foods and as much ruffage as my gut could take. Now? Active is a few laps around the floor and healthy eating is remember that I need protein today or to try all of the cooked vegetables on the menu until I find one that doesn't repulse me (answer: Green Peas!) . That yesterday, the only thing I ate ended up in a bin next to the bed so I need more calories today. Cheese raviolie with BOTH cream sauce and marinara is a good choice (you know, these food service peeps know what they're up to when they design the menus). And anyway, I learned my lesson on Saturday when I tried to order a real-world healthy meal (grilled chicken with "glaze", brown rice, sauteed spinach and diet sprite) and could only choke down three bites because it was so foul. The grilled cheese? Protein, carbs, calories and a touch of comfort. And cheese. Gooey comforting salty cheese. Yum. This is not my forever diet, just like this is not my forever body. This is just the fuel that this body needs now. It's not super premium, more like diesel. Kind of like the bod right about now.
Another lesson I learned is that the 'bad taste' that many cancer patients report will ruin many foods for you. This is temporary, and you can always find something that works for you, but it's pretty surprising the first time it happens! My remedy? Classic Coke. Settles the tummy and tames the mouth. You just need to be sure to do diligent "oral care" afterwards to keep away the dreaded mouth sore (haven't had one....yet). Seriously, crackers taste like sterile gauze right now and chocolate is so sour I can't handle it. BUT grilled cheese is salty and perfect! Good thing I like grilled cheese.
This afternoon, after actually eating my lunch (I feel like a little kid, YAY I ATE MY LUNCH!!) a y-group was held in the teen and young adult room. This was by no means a cry your eyes out psychotherapy drag-a-thon, but rather a fantastically candid conversation between two peers and two facilitators. The other patient was a young man, just about my age, married with a daughter and with lymphoma. We spoke spoke candidly about what it is to have cancer be a central theme in your marriage from the start. Planning for chidren and health care at our age. Things that only someone in the situation can relate to. Sometimes, an "I'm sorry, I can imagine but I don't understand" isn't comfort enough. This young man seemed so full of hope that his surgery on Friday (we share an important day!) will go well and send him home sans feeding tube to his beautiful little daughter. Please send him your good juju vibes from jesus/buddha/allah/krishna. He's was a cool guy.
Another note about today: ATG plus human body can yeild some pretty fantastically horrible reactions. Full histamine reaction, closing airway, hives, tremors, the whole nine yards. As uncomfortable and sucky as mine was, it was considered a "very good response" especially considering that I had NO REACTION to the damn stuff today. My word, did your good juju thoughts and prayers work people! This morning, while I was pretty well passed out from 50 mg of benedryl and a bag of morphine, two gentleman with guitars came in to serenade me from my cozy curled position. They played and sang (beautifully) a song called "One day at a time" and I was hella impressed my their finger picking skills with protective isolation gloves on. This performance brought so much joy! They probably couldn't tell but I was tapping my toe along with them with a big goofy smile on my face. They left me with a CD, which will definitely go into rotation at work, and left to sing a lullaby to the baby nextdoor. What an amazing place this is. Such big hearts and great resources. My word are P and I grateful.
Looking forward to another smooth day tomorrow and for transplant day to be super awesome too! Much love Philly folks! Miss you and thank you for the love back:)