Test Results

French Word of the Day: rémission (ray-miss-ee-own)- remission

The test results for the chemotherapy and in, and they are looking fabulous!  I would have been just a touch angry if the doctor had come back and said, “Well, that whole 6 months of chemo thing was a bust.”  Luckily, her words were, “Your levels are almost to normal! (Except for some abnormalities due to your disease.)”

Please note that this does not mean I’m cured.  I’ve had to specify that a lot.  I think every time I speak to someone about it I confuse people.  To save myself some time, I’m going to write the conversation I’ve been having with everyone.

Person: Oh my God, your results are good! So you’re completely cured!!!!
Me: Um, not quite.  It’s under control.  But not fully.  My kidneys are no longer being destroyed.
Person: So you’re not better? Do you have to go on chemo again?
Me: No, I’m better!
Person: But you just said you weren’t.
Me: I’m better than before.  My body is no longer attacking itself.
Person: So you’re cured!!
Me: You can’t cure lupus. It only goes into remission.
Person: So you’re in remission!
Me: Not yet. I’m going to be taking a special medicine for at least the next 2 or three years to control everything.
Person: But I thought you were better? I’m so confused.
Me: Tell me about it.  I’ve been confused for the last 8 years.


In celebration (and because my hair has grown back in the last two months), I got a haircut.  Check it:

I might have gotten a new photo app that I'm playing around with.
I might have gotten a new photo app that I’m playing around with. (Just for the words.  The bad lighting and poor photo quality are all my own.) My hair might also be slightly frizzy.

















Days Until My Next Parisian Pain Au Chocolat: 16

Les Éléphants

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.

Don't tread on me!
Don’t tread on me!

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.

Gros bisous!

Le Deuxième

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.

My partner in chemo crime.
My partner in chemo crime.

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.”)