Saturday, April 16, 2016

This Week in my Life: Week 15 of 2016

The view from here:

Big news this week is that I was finally able to start back on Tysabri. This drug was everything I'd hoped for the last time around and gave me 7 years with very little disease activity and no relapses. Since then (over a year later, 2 drugs with plenty of side effects, and at least 1 serious relapse and LOTS of extra MS symptoms on the regular), I was desperate to go back to the drug I know works for me. The risks are scary, yes, but for me it is so worth it.

Of the 3 locations I've had infusions, this new situation is by far my least favorite. It's a very busy cancer center with tons of patients and not the greatest setup. My previous infusion locations had much more private and quieter spots to be infused. But the nurse was great, and I can't really complain overall.
First impression - given one of these flashing & vibrating contraptions while waiting
like you get at restaurants. Haven't seen that in healthcare before!
Mine didn't work, though,so they had to call out my name the old-fashioned way.

Tons of dreamcatcher thingies in the lobby, which looked kind of cool.

Hooray, being infused!

As usual, they wanted to go in my hand, but I HATE in-the-hand, so
referred the nurse to my arm instead. Nurses at cancer centers tend to be good
with the needle, so I didn't really feel it at all.

A weird little tv on an arm that swivels around helped the time go by.
I always used to get my HGTV fix while getting infused.

The best part of Tysabri (other than, you know, a drug that works and works well) is what I like to call the Tysabri Treat. It's a nice little excuse to treat yourself to something post-infusion. Getting a 2-hour infusion isn't necessarily fun, and it kind of reminds you that you're sick - and somewhat seriously so - in a way that you don't necessarily think about when you're swallowing a pill. So, a little treat afterwards can boost one's spirits. Faves for my TT in the past have been Thai food and/or ice cream. Went with Thai this time, and it was the right choice. So tasty.

Thai Iced Tea with a little rose straw wrapper thingie.

Rose close-up.
We asked the server afterwards how she makes them, and she showed us. 

Spring roll, black pepper garlic with fried tofu, and pad cashew with fried tofu.
(My mom and I always order both of these entrees at this particular spot and split them.)
Haven't stopped thinking about this meal since Thursday! So good.

The scheduler at the cancer center puts fun stickers on the schedule
papers they give you with your next appointments. Nice touch!

Ironically, after coming home from my infusion, I had the welcome and what-to-know-before-your-infusion packet from Biogen. Having already been on the drug for 7 years in the past, I didn't need any of this info, but still found it ironic to get this too late.

I have a lot of thoughts on all the MS drugs and their marketing campaigns. (Love some, HATE some.)  I see that Tysabri has a new campaign since I was last on the drug, focusing on the idea of fighting. I'm ambivalent about the use of fighting when talking about diseases. I get it, certainly, but I also find it problematic. I may write a post about all of the different marketing campaigns at some point, just because I have a lot of strong opinions.

The whole welcome packet thingie was excessively packaged. An envelope, containing a folder, containing the welcome booklet, all of which was inside a much too large bubbled mailer. BUT, I could rhapsodize about the booklet for hours. Not the content, or the imagery, or any of that, but the TEXTURE of the paper! I could just touch that thing for hours. It's hard to describe the texture, exactly, but it feels unlike any kind of paper I've felt before. Very smooth, in a delightfully pleasant way, but not glossy. Well done, Biogen. 

What I made this week:

Hundreds of origami elephants, as per usual, but also some cat earrings for a custom order. I'm not a fan of cats, but I know plenty of folks are, so I'll probably add some cat items to my Etsy shop soon.


What I read this week:

Why Not Me? by Mindy Kaling. Like her last book, I didn't find it all that funny overall, but it had a few moments, and it was a decent mindless, qausi-entertaining read. How's that for an endorsement?

Finally finished Divergent. I started this ages ago, but didn't get into it right away, in large part due to the fact that it was an e-book I had to read on my computer (I had gotten some kind of free e-book offer thing) and I don't really enjoy reading e-books. Reading them on an e-reader is a little better, but reading on a computer or a phone is not enjoyable, in my opinion. Ultimately, I'm a physical book girl, all the way. But, I like this one and plan to reserve the next in the series at the library right away.

Speaking of books, Happy National Library week!
These socks were a gift from my friend Heather, who you'll read a guest post from SOMEDAY.

Now, if you'll excuse me, I'm just going to go meditatively rub my Tysabri booklet! 

1 comment:

Anonymous said...

Subtle. Very subtle. I though we talked about you writing it for me. :) - Heather