Wednesday, May 31, 2017

Eddie From Ohio

This is a long overdue post. Back in January, Kevin and I left Finn at his grandparents' house for his first ever sleepover so we could see my favorite band, Eddie From Ohio. This year's concert had extra special meaning for me.

The band is an alternative folky band. Their shows are energetic, engaging, and fun. They have amazing voices. I've been a fan since I first heard them in 2000, and I have lost count of the number of times I've seen them play. The past few years, Kevin and I have gone to see them during their annual show at The Birchmere in Alexandria, VA. It's a three-night performance held either on Martin Luther King, Jr. weekend or Presidents' Day weekend. This year, it was MLK weekend, and we got tickets for Friday night.

When I was pregnant with Finn, I sang one of their songs, Hey Little Man, to him frequently. Since he was born, we've sung it to him every single day. We were amazed when he was first born that simply starting to sing that song would calm him almost instantly.  Most nights, as we put Finn to bed, he begins to settle and is still by the time we get to the end of the song.

I was both excited and nervous this time. I have met the band members several times, as they usually sign autographs and CDs after the show. This time, however, I had decided I would talk to Julie Murphy Wells, who has been an inspiration for years, but much more profoundly in the past year.

Julie is a breast cancer survivor, too. She was diagnosed in 2005. I remember reading the email the band sent out explaining why they'd be reducing the number of shows they were playing. She set up an email account for those who wanted to send her well-wishes. It was her sense of humor that stayed with me, and why she was one of the people I looked to when figuring out how to navigate this world I'd been unwillingly dropped into. Her email address was myleftboob at hotmail dot com. Come on. How awesome is that? I didn't follow her story too closely as it was happening; I was 25 and never considered I'd be diagnosed with cancer ten years later. I remember seeing her play shows in the midst of treatment. I remember being amazed that she was able to do it.

I think it's pretty easy to see that Kevin and I both have relied on humor to get us through this journey. I mean, the blog is called Janet Versus the Titmonster. It's a big part of both of our personalities to deal with challenges by reframing and laughing, but I definitely had a strong example of how to do this when death is on the line through Julie Murphy Wells.

I'd tried to write an email to her a couple of times, and I always felt silly, like I was seriously fangirling. I mean, I was; besides her voice being completely amazing, she really has been someone whose story I keep looking to as I figure out how to navigate being a mom with cancer.

So after the show (maybe my favorite one ever!), Kevin and I waited in line to talk to the band. Julie was at the near end of the table. My voice betraying my nerves, I told her I wanted to thank her. I briefly shared my story and told her how inspiring she has been for me. I fangirled about the music, how much I've always loved it, but mostly how seeing and remembering so clearly how she accepted her diagnosis and how she didn't shy away from it or try to hide it but instead faced it with humor and grace gave me the courage to do the same.

Y'all, she's as nice and genuine as she appears. We hugged, we took a couple of pictures, and she asked me to share them with her. (Oops. I am going to do that before I post this. Can I blame chemo brain for this, too?) (Update: Did this. She replied. She's awesome.)

Anyway, here are some pictures.

Sunday, May 28, 2017

No Mo' Chemo

On Thursday, May 25, 2017, at 8:27 pm, I took three pills. They were my last dose of chemo, hopefully forever.

Earlier that day, I texted Kevin and asked him who was picking up the celebratory ice cream cake. He said he would, so I went home after getting Finn and started preparing a fancy dinner, steak au poivre with cauliflower au gratin and green beans (it wasn't difficult, thanks to Home Chef!).

We waited for cake until Finn was asleep, because we're selfish and didn't want to share it was already late, and I had a beer to go along with the cake. Of course I used my Iocaine Powder pint glass. My chemo doesn't dissolve instantly in liquid, but it's still a poison. Kevin told me the Baskin Robbins staff was a bit taken aback when they asked what he wanted the cake to say. He had to assure them the cake was a good thing (it was all ice cream: mint chocolate chip and chocolate chip. How could it not be a good thing?).

The last time I finished chemo, last August, was less of a relief. It's when my anxiety really kicked in, as it was the end of active treatment for a month or more. I've been looking forward to the end of this one. I had a lot of side effects from the capecitabine, enough that my oncologist reduced my dose after the fourth cycle. Indigestion, nearly constant nausea, and hand and foot syndrome (erythrodysesthesia) were the biggest side effects for me. The hand and foot syndrome was the one that gave me the most trouble, to the point where I couldn't walk by day ten or so of each cycle. Once I started the lower dose, it improved significantly. My hands and feet are still blistery, cracked, and peeling, but the associated pain is much more tolerable. I hardly had any nausea for the last two cycles either, and I'm almost back to being able to eat normally again.

I'm glad to be done. I'm still a little uneasy about it though. I wonder when...if...the fear of recurrence will begin to ease. I heard about another trial I may be eligible for that is immunology based. I've requested more information about it and will learn more at my next oncology appointment in a few weeks.

Oh, that's another thing. I don't have to go to the hospital for blood work every three weeks and then back the next day to see my oncologist. I deleted my phone alarms to remind me it's "Chemo Time". I didn't have to wake up early this weekend to eat and then wait half an hour to take the pills. I haven't been nauseous in three days. I won't get another box from the specialty pharmacy with the pills in biohazard bags. I won't have anymore chemo co-pays. Soon, my skin will begin to heal and I won't have to sleep in lotion gloves and socks. Maybe Kevin will stop saying "Pizza Time" in the creepy voice from the Little Caesar's commercial (see Chemo Time link above). Maybe.

I waited until Kevin had proofread for me to mention that hopefully he won't remember that once my counts recover I *could* potentially maybe-if-I-had-to start scooping the stupid cat boxes again. Don't tell him.