So we just got back from my oncologist and wanted to give everyone a quick update. Nothing too earth shattering happened (besides the 24 tubes of blood they drew!! The big ones….grrr…) which at this point is fine with us, I’m kinda over “earth shattering news” lol. My oncologist wants to start me on a new drug called a PD1 antibody inhibitor, I believe. It would be an infusion much like the ipilimumab that I had gotten and will be every three weeks for the rest of my life. He said they aren’t sure when to stop it, so as long as I tolerate it ok, I’ll just get infusions of it forever. I’m relieved because there’s very few side effects and he says people seem to tolerate it fine. I was worried it might be something more like traditional chemo that would make me feel crappy and then I was considering turning it down, but I’m glad it didn’t come to that – not an issue! Yay! The main issue at this point is trying to taper me off steroids fast enough to be able to start the drug next week. He is concerned that tapering this fast could cause more seizures, which is like my biggest fear. Having that loss of control and recovering from those seizures was really hard and I really don’t want to have to deal with that again if at all possible, so here’s to hoping it’ll go smoothly. I will get a PET scan next Tuesday, bloodwork, see Dr. A, and hopefully get an infusion of this new drug. He did seem concerned about things that may pop up on the PET scan (lesions on liver, lung, the lymph node on my left side of my neck, my tonsils, and my left knee has been aching) but hopefully there won’t be any surprises and nothing unmanageable.
I’m actually super grateful for how everything went today. I was considering a second opinion and was really looking for guidance or peace there and I really got the feeling today that I was in the right place and doing the right thing. My oncologist even gave me a hug…awww! I feel a real sense of peace and I know there is some part of that that is acceptance maybe even some part that’s denial, but mostly I’m certain it’s a peace from God at the constant request of His amazing people. I haven’t even cried for like a week probably, I think that’s pretty good! We just feel so loved and taken care of and I’m sure I sound like a broken record but, meh, I don’t really care! I know that people aren’t doing things for recognition, but we want people to know how grateful we are for everything. Everything. It’s hard to feel down when you’re constantly being lifted up in prayer and just by sweet reminders from friends and loved ones. We are blessed!!!! I still just have a feeling that God wants to use this so what am I gonna do but say, “let’s do it! I’m in!”
Here we go 🙂