French Word of the Day: sourire (sue- rear)- smile
The face below is the face of a girl who is RESPONDING WELL TO CHEMO! Positive test results are in! She’s not getting sick for nothing!
French Word of the Day: bavard (bah-vard)- talkative
As I go through the treatments, they become less and less invasive in my life. I’ve become more aware of my trigger foods, so I haven’t been getting as sick. I slept more than usual after my last treatment. I got 10 hours of sleep one night- something I hadn’t done since college. (College was my nap Renaissance.)
Work needed me to fly to a conference in San Francisco on Wednesday. My doctor had cleared me for air travel. Her only comment was: “If there’s someone next to you who’s sick, you need to move.” I didn’t point out that a plane is an enclosed space with recycled air circulating around.
My seatmate wasn’t sick, but she talked so much that I think I would have preferred a sick person. She sat next to me and said, “I don’t like to read or watch movies on planes,” which is exactly what every traveler wants to hear. She did, however, like to complain about how long the plane was taking and inquired every five seconds what time it was. I pretended to be asleep, but she just reached around me and started flirting with the guy next to me.
Luckily, I only had to sit next to her for 4 and a half hours.
The conference itself went very well. I got to go out for an hour or two at the end of the day to walk around. I went to Pier One (not the store) and got a fabulous seafood dinner. There is no photographic evidence of my meal because I didn’t take pictures of it. I’ve begun eating my meals instead of just taking pictures of them and placing them on Instagram. (Just like you’re not friends in real life until you’re friends on Facebook, you haven’t had a meal unless it’s been placed on Instagram.) I’m still in the test phase of this new food policy. I don’t know how I feel about it.
I did take some pictures of the pier with my ever-dependable phone.
My seatmate on the flight home didn’t speak to me at all, so it was a much better experience.
The conference went really well, so I might get the chance to see more of San Francisco next year! I was a bit worried the treatments would put everything at a complete standstill for 6 months, but that has proven to be false. (In a good way.)
French Word of the Day: troisième (twa- see-em)- third
Shirts with three-quarter length sleeves are the clothing item to wear while getting treatments. (I know you all worry the most about fashion when you’re getting sick.) More of your arm is revealed for any needle action, and yet you can still stay somewhat warm. Hospitals are generally 3 degrees below freezing at all times. They keep it cold so that you’re too busy shivering to realize your food looks like this.
Luckily, I own almost exclusively three-quarter length shirts. My wardrobe is getting a workout, and I plan to wear a different shirt to every session.
Today’s session has been going well- much better than last time. I have my parents hanging out with me again. They’ve been calling me Wonder Woman because of my red band, and have expressed their pride at my ability to type this all one-handed.
And with that, I’m off to use my superhero powers to convince the nurses to unhook me.
French Word(s) of the Day: une aiguille (ooon A-gwee-ah)- needle
This recovery time has been far less eventful than last time, thank God. With the exception of the elephants, I haven’t had too many symptoms other than fatigue. Although, my mother and sister can attest to this, a shot of espresso will get me going for a short while.
Side note: I quite frequently mispronounce words. I will forever pronounce “espresso” as “expresso.” Am I alone in this? I see the “s”, I know it’s there; I’m just choosing to ignore it.
But back to that whole lupus thing (she wrote casually as if it was no big deal), I did still have to stop by the lab yesterday. I have to get my blood drawn twice for every chemo session. Once 3-5 days before treatment to make sure I’m healthy enough to receive it and once 10-12 days after to see if it’s working.
Every time I mention this, someone says, “Ew, I hate needles” as if this fear is completely unusual and unique to them. I have yet to meet someone who says, “Oooo! Needles! I love getting stuck. You know what’s even better? When they miss and have to stick you more than once! It’s like Christmas and Easter had a love child.”
Fun fact I learned while looking up the word of the day: there is a word for fear of needles (trypanophobia), but not one for love of needles. I suppose you could say trypanophilia, but that’s not a word recognized by the dictionary… Probably because no one has ever needed to use it.
You really do get used to them after awhile. You don’t like them, but they no longer cause the dread they used to.
I’ve been going to the lab so much that they know me there. They’ve started sharing lab gossip with me. That’s right- I’ve made it to the elusive inner circle. You know you’re jealous.
EDIT: I’ve gotten a lot of questions about where I’ve been getting all the animal photos. I live a few blocks from the zoo, and it’s one of my favorite places on the planet. I have about 50 billion photos stock piled from my visits, so you should expect to see even more animals in the future (and possibly some more Paint ones). All photos are mine unless otherwise stated.
French Word(s) of the Day: les éléphants (lays el-eh-fawn)- elephants
The second chemo session hit me a little harder than the first. I had a headache before it had finished, so I’d already guessed this might be the case.
I woke up the next night feeling like an elephant was sitting on my chest. While elephants are my favorite animal, I’d much prefer it if a much smaller animal was sitting on me… like a bunny.
It turned out to be intense heartburn, and I’ve been banned from eating chocolate and spicy foods around chemo time and had my medicine increased. (I’m allergic to some forms of heartburn medication because I’m allergic to everything- including myself- so my doctor had a hard time figuring out what to do about it.)
That’s right- chocolate. OH THE INHUMANITY! Take my arm, my leg, my hair, but not my ability to eat chocolate!!!
Don’t worry, everyone. It’s only for about 3 days after chemo. I’ve already had some chocolate since then. Actually, I’ve had a lot of chocolate. And cake. And chocolate cake.
I could tell I looked bad at work on Thursday because everyone kept asking me if I was okay. Having elephants on your chest is serious business. My boss asked me if I wanted to leave for the day, but if there’s anything more stubborn than an elephant, it’s someone with an elephant on their chest.
For everyone who’s worried I’m pushing myself too hard, I managed just fine. It was an easy day and I went home and rested directly afterwards.
Thursday was my only truly bad day. I’ve been a bit tired, but everything’s been manageable. I think I’ve figured out all my food triggers. (My food triggers: anything that tastes good.) It’s very scientific, being sick. Lots of trial and error and experiments over here. I’m considering getting a lab coat to wear around the house with “It’s always lupus” written in purple script where the doctor’s name typically goes.
Everyone has just been so supportive throughout everything. I do read everyone’s comments and I appreciate them. Among other things, my aunt got me ginger beers for work, my lovely godmother made me my own meal at a party on Sunday, and my parents and Alyssa came over to help me clean. I haven’t really had the energy to tidy up, and it’s been LOVELY to have a clean, put-together room. (I have room to dance around in my purple tutu!) My family and friends are one fabulous bunch, let me tell you.
French Word of the Day: deuxième (dooze-E-em) second
Well folks, treatment number two has arrived! Both my parents have joined me again. My mom brought cookies for all the nurses in the infusion lab (for bribery to get the best chair, I assume. She’s a tricksy one, that Siobhan). The nurses loved the cookies and have been extremely nice (well-played, mom, well-played).
To be fair, they were nice last time too.
I have been warned several times that the effects are accumulative, so I’ll get at least as sick if not sicker this time- but also assured that sometimes people don’t have any issues at all. (“It’s probably going to SUCK, but it could also be okay. Who knows, right?”) Gotta love how forthright the medical community is. I’m going to be the first person who gets less sick each time. By the sixth time, the chemo won’t even enter my body- it’ll just go straight through.
Well, I’d love to stay and chat, but we’re busy watching TV shows about polygamy. (HBO’s Big Love anyone? I think we’ve confused everyone else in the room with our running commentary. “Wait, he’s getting ANOTHER wife?” “Oh, she’s so gonna kill him.”)
French Word(s) of the Day: C’est ici! (say ee-see)- it’s here!
Well everyone, it’s chemo time. Based on the messages and words of comfort I’ve gotten from everyone, you’re all way more freaked out about this than I am. I appreciate the concern. I’m doing splendidly. I think I’m making people nervous with how calm I am.
I’m typing this while getting my IV. I’ve got 6 hours to kill.
I knew everything was going to be okay when the nurse said, “You can eat and drink as much as you want whenever you want.”
They have a “Be respectful of those around you” policy, which is code for “no guitars.” I don’t think I’ll get to fulfill my dream of starting a jam session in the infusion lab. I’m not supposed to bend my arm during the infusion, so guitar playing isn’t an option. There’s a little monitor that beeps every time your arm is bent too much. Apparently my arm is constantly bending, because I’ve set that thing off about 3,000 times today.
My mom and dad both kept me company (they’re such troopers, those two!) and got to watch me as I attempted to eat lunch without moving my arm. As I’m well known for my incredible coordination, this went well. My shirt thought everything was delicious.
I’ve been reading all day, and it’s been glorious. I’ve already finished a book during my time here. I realize you’re not supposed to call time spent getting chemo glorious, but I’m an English major who doesn’t have time to read anymore. It takes me weeks to finish a single book. This is like being in a library… a ugly library where they stick you with needles and take your blood pressure every hour.
I had my dad take photos so that you’d all have photographic evidence that I’m not falling apart at the seams.
I shouldn’t get too sick, but I’ll post over the weekend so that you know I’m okay. I have a very full schedule of hanging out and doing nothing planned.