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a moment at a time

It's been about a week since I posted so I should probably give an update! For a moment I was thinking "nobody worry, no news is good news!" but then I remembered that when I was very sick I wasn't updating much. So I feel like I owe you a real update.


In the past week I've been keeping to my very strict schedule of anti-nausea drugs and it has helped so much! I take a dissolvable Zofran tablet first thing in the morning, I usually have a cup of tea and a little bottle of Ensure before I take my prednisone, and then I take an acid-reducer as well. I am also very careful to swap out my Scopolamine patch every three days. I finish out the day taking a Zofran again around dinner or at bed time, another acid-reducer before bed, and usually an Ativan before bed too. If I skip my nighttime pills, by morning my stomach is churning and horrible yet again.


I'm not sure how long I'll have to be on all these anti-nausea drugs but I can't tell you how much I appreciate them. I will admit my nausea isn't gone all the time. It creeps in and lingers sometimes, but it is a manageable amount and no longer something I have to worry about putting me back in the hospital. And the good news is that I have not vomited in weeks, and I've put back on 2 pounds! (This is good news, we met with a dietitian today who said that I had lost 11% of my body weight, which seems like a lot).


We met with the oncologist today for a consultation and bloodwork to make sure that all the things I've been doing have helped. The bloodwork shows that yes, absolutely, it has helped. My liver numbers are much closer to normal, so I have effectively fought off the autoimmune hepatitis yet again, and my other levels are nearing to normal (although my white blood cell count is still very high, which seems to be a normal side effect of the prednisone).


I've been tapering the prednisone since I got out of the hospital. I started with a week of 50 mg, then a week of 40. Tomorrow I'm down to 20 mg and my oncologist wants to speed things up so I'll be lowering the dosage after 5 days. She wanted to get me in for my next treatment next week but I asked if it could be the week after. I don't know if it's foolish or selfish but I don't want anything that might make me miss singing with the chorus in the Messiah this year.


Having missed singing in Boston Baroque's Messiah last year I am so looking forward to singing this year. It feeds my soul more than anything. I feel like the good it will do to sing with that group is enough to justify waiting one more week for treatment.


Also -- to plug -- Boston Baroque pivoted very successfully to live-streaming during the pandemic. This means that you, yes you, wherever you are can pay whichever level you want to get to livestream our December 11 performance! If you're interested, check it out here!


As it stands today, I have my next treatment scheduled for December 15, and it will be ONLY Opdivo. They are removing Yervoy from my treatment plan since it is the harsher drug and it really beat me up in the last treatment cycle. I am anxious because I don't know what just Opdivo will do to me, but I am hoping it treats me well. And if it doesn't, I have the added bonus of my mother coming out to help me!


This has been a very wordy and probably very stream-of-consciousness update. The truth is that my mind is pretty much constantly in a jumble. I don't think as fast as I used to, but my body is getting healthier (I've been able to do some exercising on the elliptical!) and I expect that the cloudy-headedness of treatment will one day part and let me feel like I can think again.


I think for my own sake I'll sum up things here for a quick and easy summation of all the rambling:

  1. I am doing okay, and I am eating!

  2. My bloodwork shows that I am healing from being sick in early November

  3. I will be singing in the Messiah, and I am so thrilled to

  4. My mom is coming out to help after my next treatment on December 15 and I am very glad

I appreciate all the support coming my way. I honestly feel stronger knowing how many folks are on my side. Cancer is a very personal fight, but it's also a group fight. And I have a hell of a group. I hope you all had a nice Thanksgiving and as we kick off the December holidays I will keep you all in my heart and prayers.


Oh also, I have listened to this song a lot, so here is a link to it if you'd like to hear it.

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