5. I’ll take the Red Devil with a side of nausea, please

Hello again! I’m 5 days into Cycle 1, Week 1 of chemo. The lovely, wondrous chemo.

I guess it makes the most sense to start from the top with Infusion day 1, which was was quite the adventure. My sister was with me and we started bright and early with a 7:30 am check-in to the Cancer Center. I made sure Portia was all prepped and ready with lidocaine cream 45 minutes before check-in and I even adorned her with some lovely Glad Press n Seal, as recommended by the oncology nurses. When we arrived they brought me back to prep Portia, which basically consisted of a nurse telling me to take a deep breath as she put the needle into the port (it didn’t hurt at all since I was all numbed up). She then used a bunch of tape and gauze to keep everything in place and voila! I was ready for action. They drew blood for my labs to ensure that levels were ok for chemo drugs, and then sent me upstairs to check in at the infusion desk.

The infusion center is big, but not overwhelmingly so, and has probably 50 or so chairs spread out in two very large rooms with a huge nurses’ desk in the middle. They have chairs with massage and heat, provide warm blankets, there are snacks and coffee available…really pretty nice. I had a wonderful nurse, Colleen, who treated us like friends and gave us a primo seat next to the patio so we could look outside all morning and take in the trees and sun. Colleen explained to us that she’d be administering the premeds while we waited for labs to come back prior to giving the actual chemo drugs. She also reassured me that any time I come in I am allowed to feel all the feels- happy, sad, mad, scared, etc. She said sometimes people come in and they are ready to relax and enjoy their four hours in the chair, and other times people are feeling terrible and just need to cry and be angry. All the feels are welcomed. So that was nice to hear, as I’m sure there will be some infusions down the line where I am just dreading being in those chairs, knowing what’s to come afterwards.

After giving me premeds which consisted of steroids to help with energy and pain, anti-nausea meds, and fluids to help with supportive care, she printed out my labs and we went over the parameters together. Most of it looked normal (including my lipid panel, which is great because we were a little worried after seeing the mild atherosclerosis on my coronary artery) except for my white blood cell count, which was fairly low. These are the cells that help to fight infection, and unfortunately also the cells that get annihilated by chemo and why chemo patients are immunocompromised, so we will have to keep a fairly close eye on those little buggers as I continue to get infusions. They were at a level that was ok to receive my first infusion, and luckily because of the Neulasta patch which I will talk about below, I’ll have some help in maintaining those numbers at a (hopefully) decent level.

Once labs were cleared and premeds were finished (took about one hour), she told me we were going to start the first of two chemo meds for that day, Doxorubicin (aka Adriamycin, aka “The Red Devil”). I had no idea Doxorubicin was called this until Colleen told us, and let me tell you, after a few days on it, I understand why it has gleaned this name. This drug is a heavy hitter in that it really depletes white blood cells and causes a number of side effects. For me, it’s mostly caused nausea, fatigue, and dry mouth so far. It also makes you pee red for the first day or so, which of course is a bit alarming, but luckily they warned me. The craziest part about getting Doxorubicin was that Colleen came out holding it while dressed in a full hazmat getup and adorning a plastic hazardous waste bag for it’s disposal. So, needless to say, the first drug that went straight into my heart vein is not exactly benign. BUT, this is what I need to save my life, so I welcomed the little devil into my life the best that I could.

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After Doxorubicin came Cytoxan, or Cyclophosphamide. This drug took longer to administer; about one hour in total. This drug causes many of the same side effects as Doxorubicin and a few other fun ones that luckily I haven’t experienced yet (ex: bladder irritation). Neither of the drugs hurt going in; just the occasional feeling of my heart rate increasing or having to work harder than normal due to the increased amount of fluid being pumped into my body. Overall though, really a smooth process. I was in the chair for a total of about 4 hours on day 1, and we were out of there by 11:30 am.

On a steroid high from the premeds, my sister and I decided to hit up our favorite local nursery to get some indoor plants for the new garage workout space. During our visit to the nursery I got a call from the genetics counselor with the results of my full genetics panel, which were negative. All negative. So, still a mystery as to why this happened to me. In my brain, it’s just science. There is a certain percentage of creatures on this planet who will have wonky cells that turn into cancer, and I just so happen to be one of those creatures. So, I guess I’ll make the most of it and try my best to beat it so that I can do something good for the world and keep enjoying life after all this is over. I don’t feel like this is a test, or a punishment, or anything like that. It’s just science. It’s a huge bummer part of science, but life is weird and here we are.

Once the steroids started to wear off late afternoon, the nausea set in. Luckily they prescribed me 3 different types of anti-nausea pills that can be taken at 4-hour intervals during the day in addition to the anti-nausea meds that were given IV, so I started those night 1. Eating small, high-protein meals also helps with the nausea, although I will admit the first two days I had basically zero appetite. Luckily my sister is a cooking wizard and made a bunch of delicious meals from the Living Kitchen Cookbook and the Cancer-Fighting Cookbook that I was gifted by my wonderful friends Danni and Bri (highly recommend both of the cookbooks)! I managed to eat about half of my normal meal size nights 1 and 2, and snack on some good stuff in between when my stomach would tolerate.

We stayed busy with garage stuff, yard stuff, trying to keep up in Spanish class (which I am loving), figuring out more details with school and medical stuff, more appointments (including a wig appt!), and some time exploring FoCo and hiking the canyon together while I was still feeling good. I did have a brain scan last Friday, which came back just yesterday as clear for metastasis, so that of course was awesome news. They did find a small cyst or benign tumor on my pituitary gland (the gland that regulates some hormones, sleep cycles, etc.), but as of right now it is considered another incidental finding and something we will check with another MRI in one year. My oncologist didn’t seem too worried about it so I won’t be either. So- yay for a clear brain! Well, until chemo brain sets in.

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As for side effects, days 3-5 were definitely the hardest for me during this first round. I would say overall the nausea has been mild to moderate, sleep has been ok beyond having to wake up to pee constantly from all the fluids I’m trying to drink (recommended to stay super hydrated), dry mouth has been super annoying but not terrible yet, and fatigue is there but managed so far by a daily nap late afternoon. Napping is a totally foreign concept to me, so that has been tough since I hate wasting time during the day. But as my counselor and many others have said, it is not wasting time when your body desperately needs it. So, I am trying to lay down for at least 45 minutes every day when the wall of exhaustion hits me, even if I can’t fall asleep.

Since the nurses and my oncologist told me that AC infusion effects are cumulative, I am trying to enjoy the things that I enjoy as much as possible right now before rounds 3 and 4 hit me like a ton of bricks. Apparently round 2 is usually still somewhat mild to moderate, and then rounds 3 and 4 people don’t really bounce back during the “off” week of chemo (which I am in right now since it is day 6 from my first infusion and I am doing chemo every other week for these first two months).

As for the Neulasta patch, it’s a pretty cool little guy. Colleen attached it to the back of my arm and set it up to release the drugs 24 hours after application. It hurts like a B when the needle first pops in there (they say “rubber band snap” but it was more like “snapping turtle beak taking a small chunk of your skin out” snap), but after that it doesn’t hurt, even when the meds are dispensing on Day 2. It stays stuck to your arm or stomach for the first 27 hours or so, and once the drugs are in you can remove it. This helps stimulate white blood cells from the bone marrow so the numbers don’t drop too low. In turn it can cause bone pain in the long bones, but for reasons I mentioned in a previous blog, Claritin works to combat the pain (which I still think is super cool and weird). No bone pain yet beyond one or two small rib/back pangs that I’ve noticed.

So, all in all first round has gone pretty well. The low-grade nausea at all times is definitely tiring, but I am trying to enjoy still having an appetite and feeling not constantly nauseated while I still can. I know it’s likely to get worse, so I just do what I can to convince myself I’m not nauseous and eat food whenever I am up for it.

Brandon took me out to a nice sushi dinner the other night at a new place we hadn’t tried yet (and yes, I am technically supposed to try to avoid sushi while on chemo, but I was craving it so we thought what the heck, just this once…) and it was SO delicious and totally hit the spot, so that was really nice. He and I are just trying to savor the good moments whenever we can, since we know there will be lots of tough ones ahead. Also, he is amazing and has helped me a ton with the garage project, managing appointments, keeping track of calendar items, telling me that he’ll still love me when I am a bald swamp basement monster, etc. I love him so much (hi B).

I’ll be losing my hair next Tuesday the 28th! I am having a “Champagne and Shave” gathering at a local salon that does head shaves, wigs, etc. for chemo patients. The woman I am working with there to get set up with a wig is amazing and she is coming in after hours to help me go bald so I don’t have to deal with the horror of chunks of hair falling out during chemo round 2 next week (apparently it happens in 1-2 days which sounds horrendous- gimme the buzzers). So- stay tuned.

Sending love and doggie kisses to each and every one of you. PS- Meli’s birthday tomorrow! My clown is 6!