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Apr 3, 2020 01:32AM
Sugar77: Thanks for sharing that coping tip from the webinar and for the well wishes today! By the way, do you have another name you'd like us to call you? It's not at all required, but just wanted to check.
J (ByHisGraceTwice): Thank you so much for the comforting words! I read them right before I started my infusions and it was nice :) By the way, do you want to share what part of the country you live in? It's not at all required, but just wanted to check.
BostonGal: Cozy in bed with ice pack and cat sounds awesome! So relieved to hear that your port surgery was smooth. I am still hoping to get it done soon, too. By the way, are you from Boston as your username implies? Should I add Massachusetts for you to the roll call list on top? And if you have another name you'd like us to call you, please let us know. It's not at all required, but just wanted to check.
zee72: Welcome! Glad to have you join us and share your story. I'm interested in how you are planning to keep working during treatments. While my oncologist also supported me doing the same, I've been feeling overwhelmed with planning for chemo, learning about breast cancer, prepping my house, dealing with the coronavirus craziness (my city is on lockdown and supplies are hard to come by), and stressed out at work. So, I ended up taking off a few weeks, starting this past Monday, which worked out perfectly because I found out on Wednesday that I would be starting chemo on Thursday. I am relieved to have some time off to see how my first infusion feels. Especially since it's currently 1am and I'm wide awake, so if I had planned to work tomorrow, I would probably struggle with energy in the morning! It would be interesting to hear more about how you made the decision to keep working (assuming you had a choice) and other factors we might consider. Also, similar question for you about your name preference. Should we continue to call you zee72, or just Zee, or anything else? It's not at all required, but just wanted to check.
About pre-meds given immediately before your chemo meds: My infusion center nurse explained that the steroids in the pre-meds that I'm getting (not sure if you all will have the same) will probably keep me awake and feeling pretty good in terms of energy-- it's true! I almost feel great and it's weird! Ok, not great, but definitely awake and not in pain. I was exhausted after treatment, but I went for a walk outside with my partner, then ate a light dinner (chicken soup and a scoop of rice) and laid down to rest early. Then my exhaustion (which was like being tired but not sleepy) suddenly turned into wide awake. Plus, I'm getting up to use the bathroom every few hours because I'm drinking so much water.
About my first chemo appointment today: Overall, it was a really nice experience, mostly because of the staff. I had to fast last night/this morning for a blood draw for a research study I'm in, so I brought a sandwich and homemade iced latte (kinda) for me to enjoy as soon as I finished with the blood draw. I also got to have a quick Q&A with my medical oncologist, who I love, and that was helpful. It took forever for all of these steps because my appointments were scheduled the night before and some things weren't updated in the system, and because staff is reduced due to the coronavirus situation. Got to the hospital at 10am, but didn't get to the infusion center until 12:30pm. Then, about an hour later, I got settled in my chair and hooked up to the IV, but there was a delay releasing my meds, so I didn't actually start infusions for another 2 hours, around 3:45pm. I was finished around 6pm. So it was a long day! My nurse said this slow start is common for the first infusion because of all the paperwork and double-checking, etc., and it shouldn't happen next time. The Benadryl in the pre-meds didn't bother me (some people have adverse reactions) and it made me sleepy so I ended up sleeping pretty hard through most of the Taxol infusion, which definitely made the experience better! By the way, I didn't do any of the preventative tricks that I've read others talk about: no cold cap (too expensive), no icing of the hands or feet, no special oils or anything for nails or stuff... not because I don't believe that they work, but because I think I'm getting a mild enough dose and I am feeling optimistic that I can handle any changes and talk to my oncologist about interventions at that time.
Chemo tip: At the end of all my chemo meds, my nurse said, if I have time, he would give me the rest of the saline fluids to help with my hydration rather than throwing out the rest of the bag. What a great idea! He was like, hey, you paid for it so you might as well use it! This may have helped me to leave feeling pretty good since I was already decently hydrated.
2/13/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH)
4/2/2020 AC + T (Taxol)
Prophylactic ovary removal
Whole-breast: Breast, Lymph nodes, Chest wall
Lymph node removal: Underarm/Axillary; Mastectomy: Right