where does the time go?
Updated: Dec 16, 2021
Last I updated, it was the beginning of the big rehearsal and singing week. At the time, I wasn't entirely sure how I was going to get through it. It's hard in normal years, but this year? Especially hard! Buckle in, this is a long and rambly post, because today I am a rambly person.
I am happy to report I got through everything this past week just fine. The drugs I was prescribed to keep me from getting nauseous did exactly what I needed, at no point was I feeling too ill or even too iffy to keep going with work and rehearsals. I worked all week (except Wednesday, which was the dress rehearsal during the day) and I drove back and forth from Boston to New Hampshire almost every day. I stayed hydrated, made sure I always had snacks on me, and I pulled it off!
The Messiah went really well (the concert is still available online, until the end of December, and I will happily point you in the right direction and/or provide a code if you'd like to view it! reach out to me if you're interested!) and it's the most grateful I've ever been. A month ago, I was barely out of the hospital, had no voice, and had lost an alarming amount of weight. Today I am stable, singing, and I'm eating regularly (gained back 5 pounds!). I can't really express how much gratitude I have for being able to be on that stage with that incredible orchestra and chorus. I teared up multiple times during the three performances because I just couldn't help it. All three concerts were pure joy for me.
In addition to that, I got to sing Rejoice, Greatly from the Messiah at church on Sunday morning, and that went really well too! That song is so much fun to sing, and any time I can sing a solo at church I enjoy it completely. It's such a blessing to sing there! The whole week was like a nice little second reprieve from cancer, where I could kind of pretend I am a normal person doing normal people things! It was truly wonderful.
My health is pretty good right now overall. The nausea is really happening very infrequently. BUT we shall see if that changes because, well, I got another treatment today.
This morning I went to the Cancer Center with both Isaac and my mom (MY MOM IS IN TOWN!) and though my bloodwork still showed a little bit elevated liver levels (ugh, what else is new) it was safe enough to go with the treatment since we're only doing one drug now.
Since we've cut out the Yervoy and we're just doing the Opdivo, that has cut down the infusion time so I get in and out of the Center a lot faster. I am feeling okay, but very fatigued since I got my infusion this morning. I took a long nap and I'm keeping an eye on how I'm feeling. I'm extremely relieved my mom's here to take care of me!
Realistically we have no idea how treatment will be now that it's just Opdivo. Some folks have no side effects, others do. I've already proven that my system is a little bit sensitive to these things so I'm expecting something. I just don't know what!
I met with my palliative care nurse and counselor yesterday and I made them laugh when I told them I'm the kind of person who will read the end of the book, or google the movie I'm watching to learn the ending before we get there and that I was frustrated you can't do that with cancer. But you really can't. There's no reading ahead. There is no way of knowing how I am going to feel tomorrow, the next day, or on Christmas.
All I know is that I have a huge and wonderful community pulling for me, I have tools to fight if the side effects start to take hold, and I have the right people to call if all else fails.
I am feeling strong, and I am determined to be okay!