June 22, 2017. I confirm with the cold cap company that a woman will meet my husband and I at the infusion center to train him on the cold caps. My appointment is at 9AM, so we will meet there at 8AM so I can start the first cap by 30 minutes before infusion.
June 28, 2017. I am at the drugstore picking up prescriptions to take during chemo. One of the pill bottles actually says, "Take 1 day before and 1 day after CHEMOTHERAPY." This, somehow, makes it real. I am really going to get chemo.
June 30, 2017. We are out the door by 5:30AM. I've got my large water bottle, snacks and a cup of decaf coffee for the road. We live about 2 hours from the infusion center, so it's a bit of a trek. The drive is easy, and we get there a little early, so we take a walk around the parking lot. Then we head upstairs.
The cold cap woman met us in the waiting room. She had a cooler full of dry ice and cold caps. An electric blanket (for me to wear, because I will get very cold!) and heavy duty gloves to handle the caps. I officially felt like we were a circus that had come into this quiet environment and I wondered if it would really be worth it. But, we charge on. It would be a long day, not only did I need to wear the cap for 30 minutes before the infusion, I had to wear it during infusion and for FOUR hours after infusion! The center was not really prepared for the four hours after infusion, but they were very nice and let me stay in my chair for the four hours.
As they brought us into the room, I seriously felt more like I was headed into a spa than a chemo room! The chairs were really nice and there were big windows, and, it was actually quite peaceful. There were only a couple of us at that hour, but soon, others arrived for their infusion.
First, they weighed me so they could put together the right amount of meds. Then they got the IV in, which we found out, is not so easy on me for chemo. I have great veins in my elbow area, but they do not administer chemo in that location (or near joints) if they can help it, so they look for a vein in my lower arm. This proves to be difficult, and is a foreshadow to what will become an ongoing issue that requires attention.
Once they get the IV placed, they drew blood and ran a couple tests, mostly to make sure I'm okay to receive chemo. On the first day, it all came back looking good, and so we began.
Now, by this time I was fully in cold cap mode (they switch the cap to a cap that has been on ice every 30 minutes), so to be honest, it was kind of a blur.
The chemo I received that day was referred to a TC. It stands for Taxotere and Cytoxan. These are two drugs that, together, made up my chemo treatment. I was scheduled to receive four rounds in total. One every three weeks.
To start, they gave me a bag of Benadryl (this is to stop allergic reaction to the Taxotere delivery agent). They also administered a steroid and an anti-nausea drug that works for up to five days. The Benadryl made me very sleepy, so I went in and out of sleep for the first half of the infusion.
As she started the first bag of chemo (Taxotere) I tasted it immediately. Metallic is the best way to describe it. I also felt a stomach flip, so I ate a couple crackers, drank some tea and then fell asleep until the next cold cap had to be put on.
Once the Taxotere was done, they came over and took that bag down. Then they put up the Cytoxan. As soon as this one started, I taste it again, but I also had a wave of nausea. I ate some more snacks, and that worked. It turns out, eating snacks during chemo can help a bunch. Also, while going through chemo, in general, the rule is to never let your stomach get empty. This really helps with nausea.
Chemo is done, IV is pulled, and we do the caps for four more hours, then leave the center at 4PM. The drive home was uneventful.
I need to take steroids the day before, the day of (they administer these via IV) and the day after. So, as much as I was tired from a long day, I was actually on a decent steroid high, which made it hard to sleep. The Benadryl sleepiness only lasted a couple hours. I took Ativan that night to help me sleep and to help keep nausea and bay (Ativan is a miracle drug... it does it all!).
The day after I was tired, but still have steroids to take, so have the steroid high hanging on. This lasted for another full day.
My chemo was administered on a Friday, and I thought I'd see friends on Sunday afternoon because on Saturday, and even Sunday morning I was still feeling pretty good. Then, Sunday around 2PM it hit. The steroid high was gone and I was hit with a wave of fatigue like I hadn't felt since having mono when I was 26. I couldn't keep my eyes open, much less, see a friend. So, I slept all afternoon, ate in between naps, and then slept all night. The next morning I awoke and could barely make myself move enough to go to the bathroom. I was definitely not going to work.
I texted work to say I wouldn't be in. The next thing I knew it was 1:30PM. I hadn't slept in that late since college, and even in college sleeping this late was rare! I got up, ate some avocado toast and an apple, and then laid (slept) on the couch for change of scenery. I didn't have bad nausea, thankfully, but the fatigue was strong.
Then, the next day, I woke up and had a lot more energy. So, I went into work and it was good to be somewhere that made things feel normal. From that day on, I progressively felt better, but also, progressively lost my taste. I could smell everything, but couldn't taste anything! So frustrating.
The weekend before the next infusion, my husband and I had a mini local vacation because I had won a hotel room at a place on the ocean. So, we stayed there that Saturday and walked to dinner at a nice restaurant right on the cliffs. I had one drink (my oncologist approved it) and realized that my taste was coming back a bit. When I got my dinner, I could taste for the first time in two weeks and it was fabulous!
The five or so days before the next infusion were my best. In fact, by that time, I was seven weeks post surgery and getting much of my range of motion back. I felt so good that a friend and I went on a hike up one of the local peaks. It was amazing!
I couldn't believe I was hiking while doing chemo (and, really, so soon after a double mastectomy!). The hardest part was dealing with my hair because when cold capping you're not supposed to wear a hat or get your head too hot. But, during chemo, you're very sensitive to sun, so a hat is a must. Well, I slathered on the sunscreen, went without a hat, and pulled the hair into a very loose ponytail. I did my best! There was no way my hair was going to keep me from the trail.
Then, a couple days later, we did one more hike. Then, the next day, I was headed back for round two. Knowing I was about to go through the whole process again, and chemo is cumulative, so I knew the side effect could be a little more severe. I was not looking forward to the cold caps... but I only had three more rounds, so I would just suck it up in hopes of saving the hair.
But the evening before the next infusion, I enjoyed the views from the top of the hill that extended all the way to the ocean.