AC Chemo #1 - Adriamycin & Cytoxan
I woke up ready to get the show on the road. There's been enough lead up, enough preparation, now it's time to do the work--and the only way through it is to DO it.
Got a Burn workout in, did my normal morning routine, and then as we were getting ready to leave, Ayla came downstairs and gave me a giant hug. Then Paxton joined. We all had tears. That was a tough moment. I know I'm scared, but this was the first sign that they are too. There's just so much unknown and they don't want to see me sick. And today it begins for all of us. It's not just me going through it, their lives have all been upended as much as mine. I'm glad Ben walked in and snapped this photo...
My appointment was at 11, which meant we got to sit in the car in the "waiting room" for 45 minutes until they called me in--COVID policies because patients in the cancer center are immunosuppressed.
So, we waited. Notice my port-access friendly shirt, that's *also* warm on my neck and arms? I'll bet they didn't have "chemo patient" in mind when they designed it...but it's perfect. Also, I was by far the most "extra" person there with my bright giant bag, big hair (this time anyway) and enormous water bottle. I didn't care.
When I finally got to go in, they drew blood by accessing my port, which turns out to be REALLY easy. They even numb the area with a numbing spray so you barely even feel the needle poke. Then they leave a tube on it throughout the whole treatment where the different medicines can each be hooked into that tube. It was SO easy, and I didn't feel a thing. It made all the weirdness and uncomfortableness of getting and having the port suddenly very worthwhile.
Next Ben was able to come in and we met with the medical oncologist, who went over all the drugs I'd be getting, answered my questions, gave me instructions on what to expect, when to call in, and why we were doing all the things we're doing. Basically this:
- Because of the type of cancer and "high risk of recurrence" MammaPrint results, they are treating it like Triple Negative Breast Cancer, which responds best to chemo and statistically significantly decreases the risk of recurrance.
- Stay on top of the nausea. He said to take the anti-nausea tablets at the first sign of feeling funny. Take two if I'm already feeling queasy. It's much harder to get it to go away than it is to prevent it.
- He said my hair would probably fall out in 10-15 days. And to have a head-shaving party. I was allowed to cry about it for one day, and then I need to get over it--it's just hair. That was a little harsh to hear (even though it's exactly what I already had planned to do).
- He explained the Neulasta shot I'd be getting tomorrow evening that works to SUPER boost my bone marrow production to make white blood cells, which will have been killed off by the chemo drugs. This is primarily to keep me from getting and being so succeptible to infections. Also, he said to expect some hip and bone aches as a result, but interestingly, taking Claritin daily helps with those symptoms...which I already do.
That was mostly it! Then they kicked Ben out of the building (he went home) and I went back to the infusion chairs...It was now about 12:45 and I had already received several messages from people asking me how my 11am appointment was. We'll all need to learn...this is an all-day event.
But now it was time. I walked into the room and was disappointed to see that it was a big (and quiet) open room with several other patients, many of whom where sleeping, which meant I probably wasn't going to be able to have long phone calls, video calls and messages like I had kind of hoped I could. But that was ok. I had my phone (and an extension cord), my headphones, books to read, and plenty of new things to learn and see for my first chemo experience.
First -- the Pre-Meds. She hooked my port tube up to two bags of anti-nausea meds (Aloxi & Amend), then a bag of a steroid solution. All that took about an hour, during which the nurse gave me a full rundown of the process, the possible side effects, who & when to call if I had questions or symptoms that seemed abnormal. I liked her a lot. She was very kind, not too chatty, but made me feel very at-ease. I spent the rest of that hour writing in my journal and responding to messages with friends and family.
Next -- the Adriamycin (aka Red Devil). This is the stuff that's so toxic to your skin that it has to be hand-administered from a syringe rather than from a drip bag and checked every 5 mL to make sure it isn't leaking or causing any problems. It's also the reason why I was able to get a port instead of doing all of this through IVs. Fun fact, it also turns your pee red for a little while.
It was weird to finally see it, and once I did and the process was happening, it wasn't nearly as scary as I thought it might be. We'll see how I feel in two weeks when I have to come back for more after I've gone through the side effects, but actually GETTING it was no big deal -- in fact I didn't feel a thing, and this portion of the process only took about 20 minutes. Per a recommendation, I asked for ice to suck on during this portion -- supposedly that helps prevent mouth sores?
Then - Cytoxan, the second chemo drug I'll be getting for each of these first four "dose dense" treatments. It was clear, and in a bag on my IV pole, and would take about an hour to adminster...so I took it on a trip to the bathroom with me.
Then, I waited. I joked with some friends that it was awfully similar to sitting by the pool in a reclining chair with my phone and a giant water bottle. Just no pool, and the cocktails are strangely delivered and don't taste good.
Finally, the last step before I left was to get my Neulasta Onpro stuck to my arm. This is a handy little time-saver that will administer the shot at a specific time tomorrow without me having to do a thing (or go back to the hospital). It even has a light on it. Before I left the office, it beeped and gave me a 15 second warning for the needle to hit me, which felt exactly like a little rubber band snap.
And that was it. I told Ben I was done and he and the kids came to pick me up at about 3:20. I felt pretty good (steroids) and was HUNGRY, so I wolfed down some cheez-its in the car on the way home...I'm allowed to eat snacks while I'm there, but I haven't figured out how to eat snacks easily while wearing a mask?
When we got home, Ben and I went for a short and slow walk up at the park. Though I don't expect to keep up my normal exercise routine and intensity during all of this, I have been encouraged to know that exercise during chemo is beneficial to help with energy levels and I know it's good for digestion and just general mood. So I plan to walk and stretch and do light strengh workouts as much as my body wants to do each day.
As the afternoon and evening wore on, I felt mostly ok, a little off-balance, a lot puffy (that was a LOT of fluid between 6 bags of medicine and a gallon of water from my water bottle) and my head felt like there was a lot of pressure between my eyes. But we had a really tasty Jim N Nicks dinner, delivered to us by a family from church, and got to eat outside.
Around 6pm, I started to feel a little funny, and decided that was a good sign to take one of those anti-nausea tablets, so I did. The next couple of hours, I was ok, just moving a little slow, not exerting myself much. Ben had some work to do on his computer, so the kids and I hung out an watched some tv on my bed. Two of my wigs arrived to try on, so we had a fun little fashion show as I gave those a try (more on that when the third one finally arrives).
But by 8:40, I was pretty wiped out, tired from all the talking and commotion and "new" from the entire day. Plus I was starting to feel kind of queasy. So I kicked the kids out, sent them to bed, took another nausea tablet and went to sleep, hoping for the best. The best comparison to how I felt was when you're a little bit motion sick the first night on a cruise ship...and the best thing to do is SLEEP it off.
My nightstand is getting crowded.
Thankfully, I fell asleep easily, slept well all night, and when I did wake up, felt pretty good. I also woke up feeling great this morning and have had a good day so far without any problems other than my face and chest feeling flushed and red. I've been told the effects really start about day 3 and last through day 5 or 6, so I keep waiting for the truck to hit me. But in the meantime, I enjoyed a very nice day today -- working on blogging and journaling, helping the kids with school, coffee with Ben, a Zoom call with Toni & Wendy, a phone call with my mom, etc. Very "normal" day so far.
I'll update again in a few days once I see how this round affects me. It sounds like the pattern might be similar for future rounds - though likely more intense as they continue, from what I understand. But that might help me predict what days I'll feel good vs. bad and how to best prepare.