This morning has felt the best I have felt yet. Most mornings start out feeling well so I hope this feeling keeps going in this direction of feeling back to myself.

Wednesday we had a meeting with my oncologist PA before getting an infusion. I remember all of that happening but it was an outer body experience. I felt terrible, it was hard to focus on what she was saying. Thankfully my mom, Jason and I had made a list by day since chemo what I had been experiencing so the PA would maybe tell me something hopeful. She listened to it all and said “I know none of that sounds good, but none of it is usual, sadly.” Just knowing that made me feel better, mentally a little, that at least nothing was wrong, even if it felt physically wrong in every way. I asked if there was a way to lessen any of the side effects I was experiencing. She did say I can take a lot less of the steroid next time around, which I was so glad to hear. Also wondered why we had to start full force, instead a little bit then add more on as needed, but I’m not a doctor. As much as I know my doctors are doing what they need to do to rid me of the cancer, feeling the way I did I do question their methods. How could I not? At the end of our meeting the PA asked if I wanted to go to my infusion. I’m sure I was a joy to interact with, I just told her to tell me what to do cause I just didn’t care (that was my general feeling, I didn’t care about anything the way I felt). She walked Mom and I down to the chemo room and put us in the kind hands of my second chemo nurse, Ashely.

We were further back in the chemo room, which I thought maybe it would be quieter. There was a very loud lady across the way from me and the only shield I had from her was a curtain that did nothing for the sound. It got to the point where I asked Ashley how much longer she had. Ashley gave a knowing look and told me 10 minutes (it has been at least an half hour at that point). I asked for less Benadryl this time because it makes me so sleepy. I did get less but shortly after she slipped it into my port I was in and out of sleep. Between that Mom brought me a small cup of soup to eat. That has been most of my diet this week, soup. And I think it’s a lot, I’m told its about a half a can each time.

This infusion I did isn’t chemo, but I’m still getting a drug each week for an hour and a half that has no side effects. While chemo is an infusion, its easier to separate chemo weeks (every 3 weeks, 3 hours with side effects) and what we are calling infusion (every week that I don’t have chemo, 1 1/2, no side effects). I think the biggest side effect to infusion is the Benadryl they have to give me. It’s just hard to tell if I was still experiencing aftermath of chemo or the infusion – we hope it was just the chemo and that next time it won’t be a week process of feeling better.

Side effects that I think will be here till this is all done that don’t even feel like side effects anymore, just part of new cancer life:
-dry mouth. It’s so gross you guys. My mouth hasn’t felt clean in a week. And it’s sensitive so brushing it is task in and of it self. But I’ll take it cause it doesn’t make me feel bad.
-tingles. I get these all over the place at any given time. At first it was largely in my feet but I feel it in my hands (things don’t feel normal to touch) a lot. My face/ jaw often. Strange feeling but nothing I can’t live with.
-skin change. They say my skin would be drier but so far I’ve gotten oiler. I’m breaking out more than normal. Maybe that will change but again, I can live with it.
-appetite. Such lovely friends have brought us yummy food and I’ve barely gotten to enjoy it. Between textures being off or simply not having the desire to eat, as someone who loves food this is very sad. I have lost weight, but of course not in a good way. I hope this returns but looks like I’m more of a tiny portion 4-6 times a day girl for now.

I moved from the bedroom level of our house this morning and sat at the table for breakfast. Looking out the window and saw that everything was so green outside. I believe Wednesday was the last time I left the house, I don’t remember it being so pretty out. Hope to venture out today, well see. The thought of that doesn’t overwhelm me like it did days ago, but I’m a little fearful of wearing myself out. Jason and my mom are very patient with me. They are glad to see me behaving more like myself and hope we all enjoy the weekend together. Thank you guys who have prayed and sent messages and food. I feel very loved and cared for, even though its hard to receive. I wouldn’t want to go through this without the amazing family and community I have around me.

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