I went to Siteman yesterday to meet with Dr. Naughton for a follow-up, or so I thought. When I got to registration, the lady told me that I needed to go to labs, see the doctor, and then go for my first treatment.
Me: What treatment?
Her: (with an awkward look) Chemotherapy.
Me: NOBODY TOLD ME WE WERE DOING THIS TODAY!!!!!!!!!! (turns around and stomps off to lab side)
After checking in with the lab people, I started texting my peeps and flipping my shit. Ultimately, Kristie came up to be with me, though many others offered. Thank you to everyone who did. We were there all fucking day. It turns out they realized at the last minute that it was stupid not to start chemo that day, but nobody bothered to call me to let me know. Nice. I have heard from other patients that the doctors just take control over your life and assume you will do whatever they say. This is annoying as fuck.
Eventually, I got over it. They finally got my pregnancy test result back (negative), and were able to enter that info into the computer, at which point I was randomly assigned my course of treatment. (I made it into the trial). I’m getting AC (Adriamycin & Cytoxan) chemo for the first 4 cycles. I’m not sure what I get after that, but I do know I will be doing my treatments every two weeks on Fridays.
Once I was in the chemo room, they started saline, then steroids, then two bags of anti-nausea meds. Finally, it was time to push Adriamycin, which is very red, and is also known as The Red Death or The Red Devil, thanks to its lovely side effects. After Adriamycin, I got the Cytoxan, which gave me a sinus headache. They warned me prior to starting the infusion that it was a possibility, and to let them know because they could slow the infusion which usually helps. They did that, and it helped a bit. They told me to take Claritin when I got home, and that helped as well.
I left with two prescriptions for anti-nausea meds. I think Compazine and Zofran. I was supposed to leave with a Neulasta shot to give myself today to keep my blood counts up, but my insurance company acted like a dick about it. So now I have to go to Barnes in the CWE this afternoon to have it given to me at the 24 hour Cancer Care Clinic. They will start mailing me my doses every week. Insurance companies are stupid. I won’t get started on that. Ultimately, I’m grateful to even have it. I only got accepted into the Federal High Risk Pool in October, and that is the month I found my lump.
I was at Siteman from 10 to 5:15. It was a long day. I’ll be better prepared next time with a bag of activities and comfort items. Also, snacks. They have snacks there, but I didn’t want any of them. Also, I will find someone to come with me ahead of time. I know that notice is always appreciated. But seriously, Kristie is an amazing friend. Just thinking about all the things she has done for me since this all started…I can’t do it without crying.
We are going to arrange it so I get my fills on the morning of chemo, so that it going to mean an even longer day, but it will be worth it. The boobs are feeling just fine, thank you. 🙂 I had someone ask how the fills are done, and thought it would be a good thing to post about. My tissue expanders each have a round magnetic port, which the nurse finds with her own magnet. She then marks an x over each. Then she cleans the area, and injects a needle into the port. She uses a syringe to push saline into the expander. I can see it rise, which is weird. Then she moves to the other side. Mine bled a good amount when she pulled out the needle. I was told this was a good thing, because it means my vascular system is good, and that I will likely get the sensation back in my breasts. According to her, this is somewhat rare. For the first few weeks after the mastectomy, my breasts were completely numb. A lot more feeling has returned. So far, I am very pleased with the results. The yucky stuff is coming off my incisions and they look really good. I think the end result will be nice.
As to how I’m feeling from chemo: I was extremely tired last night, had a headache, and started to feel a bit nauseous. I started taking my anti-nausea meds. I cannot remember what time I went to sleep. D made me go to bed because I fell asleep on the couch and started saying weird stuff. I only woke up once, because I was sweating like crazy and needed to pee. I woke up this morning feeling a little blah, but mostly fine. I took another pill, ate breakfast, and now I’m drinking lots of water.
I’m worried a lot about the side effects of the Neulasta shot. It can cause severe bone pain. I hope I’m lucky enough to avoid that. All my good drugs are gone, but I will definitely call the exchange for more if that shit starts up.
I have about 10 to 14 days before my hair starts falling off. Gotta get on that wig search. I was going to go yesterday, but then I had surprise chemo. I was going to go today, but now I have to go back to the hospital. I may go on Monday morning. I’m getting nervous, though in some ways I’m ready to get this part over with.
