Day 15

    Yesterday I thought it would be interesting to chronicle my regular Monday schedule for you all. Turns out, this hasn’t been a regular Monday. In fact, it’s been a pretty crappy day. But oh well, I stuck with it (mostly) and took pictures and notes so you guys can come on this sucky ride with me anyway.

    Here is how it works: Chemotherapy days are counted continuously, regardless of whether or not I receive treatment on that day. So today, I am on Day 15 of chemo, even though I’ve only gone in for 7 treatments so far. Make sense? Good. You guys are so smart. Because it’s a Monday, the plan is Bleomycin treatment and a pulmonary function test plus a check-in appointment with my oncologists. This is how it went!

7:00am:  I have to get my blood drawn at 8am in order for the results to be back by the time I start my chemo, so it’s a bit of an earlier wake-up call than I would like. Then again, anything before 11am is earlier than what I would like!

Go Away

7:05am: Getting ready for the day! Today is the first time that I notice my hair starting to fall out. There are so many stray blonde hairs all over the place, I feel like a shedding golden retriever. This doesn’t bother me at the moment, but losing my eyelashes does!!! Doing my makeup leaves me at least 10 lashes down per eye. This is very sad, they are all jumping ship. Only my eyebrows remain loyal, you stalwart friends. I promise never to forget to groom you again.

7:20am: Delicious and nutritious breakfast. I have the extreme luxury of having my mom around to make food while I get ready. Eggs are delicious, but they have to be very overcooked just to make sure no stray runniness gets in there. All my regular bread has been replaced by Ezekiel bread by my sister’s orders, and it is quite filling and delicious.

7:30am: Off to Beth Israel. I live close enough to walk, and for now am feeling well enough to get there and back every day. It’s nice, because at this hour you get to see all the happy Brookline kiddos walking to school with their moms. Adorable.

8:15am: Blood draw at the outpatient oncology clinic. They’re not cool enough to draw blood and put in an IV at the same time (I’m starting to realize Children’s is the only place kind enough to offer this lovely service) so I get stuck in my hand, first needle of the day.

8:20am: Coffee break! How is this possible on my new caffeine-dairy-sugar-free diet? Well decaf coffee will have to do the trick, with plenty of soy milk and some artificial sweetener. I swear, I can’t wait for a caffeinated whole milk latte at the end of this.

8:45am: Pulmonary Function Tests. I had baseline levels done a month ago before I started treatment, so today’s test measures how much the Bleomycin has affected gas-exchange in my lungs. It didn’t go well L Last month I was at 109% of the expected levels, and today I was at a measly 88%. That’s a big drop, too big. I know it’s not in my control, but I’m disappointed somehow, like if I had studied harder I could have done better on this exam. Unlike my blood counts or hair, the damage to my lungs is a permanent irreversible side effect, so it can’t be allowed to drop much further than this.

No comment

9:45am: Appointment with my doctors. The good news is that my blood counts are all still in really good range, so I shouldn’t be too impacted immunologically yet and my platelets look awesome. The bad news is the results of my pulmonary function tests. We’ll finish this round of Bleomycin today and re-test my lungs on Friday to see if my numbers continue to drop. If they do (which is likely) I’ll have to stop taking Bleomycin. To compensate, I’ll have one whole other cycle of Etoposide and Cysplatin treatment added. This isn’t great news. Yes, of course I want to retain good lung function (I need that, right?) but it sucks to have to do an extra 3 weeks of chemo.

10:30am: Start chemotherapy. One more stick for an IV, and I get started on fluids and maybe my last round of Bleomycin. Luckily, it runs pretty quickly and I get to read my awesome book while I wait.

ouch

I have amazing nurses, truly

Am I done yet?

Mindy Kaling is hilarious. I never want her book to end.

12:15pm: On my way home already! I am in good spirits but definitely ready to get my nap on. Four and a half hours of activity is pretty much my limit before I need to take a break, so that’s great. Totally looking forward to the rest of the day.

zzZZ

2:00pm: Oh no. It is unfair to be woken up from a solid sleep with body aches and chills. I pile myself under every blanket I own, but cannot feel any better. Seriously, I felt miserable. So I took my temperature and it was 101. Boo, hiss!!! IV meds + fever + chills = trip BACK to the hospital. 

3:00pm: At the BI clinic again. This time I get freshly stuck to get blood cultures, and also do a urine sample (no needle for that). While waiting to see if I can go home, I get really sick and throw up in the waiting room. You know what’s gross? Throwing up in front of total strangers just waiting to see their doctor. Nice. I did not get a photo.

3:15pm: Back in a chair, getting IV fluid to hydrate me and some more meds to get me to stop vomiting. That’s my fourth stick of the day, and I am just DONE with it. Still freezing. Luckily it seems that my fever and general grossness is either a side effect of the chemo or a mild viral infection, but since my blood counts are good I can spend the night at home as soon as I feel better. I’ve been in the hospital enough to know that my bed > hospital bed, so yay.

6:00pm: Home again. You know that feeling when you’ve thrown up everything you ate all day, and then as soon as the nausea breaks you’re just super duper hungry? Yea, that’s me. Fortunately I’m starting small. Still, all you people that think breakfast in bed is fancy, check this out: dinner in bed. That’s the ticket!

So that’s been my day so far. Now I’m resting and writing this and counting down the seconds until I can take another advil again because everything from the top of my head to my toes is either pounding, sore, or stiff. I’d say I predict I’ll have a pretty chill evening and hopefully sleep very well… but who knows where the rest of this crazy day will take me.