Round 1 Down, 5 To Go

I am not sure what I expected when I started my chemotherapy. The classic line you hear is: Everyone’s experience is different. Not too surprisingly given my need to plan everything, I had a “chemo recovery schedule” in my head that dictated that the following would occur: Day 1 of Chemo (get through it and feel OK), Day 2 of Chemo (supposedly still flying on the steroids, I should feel good), Day 3 and 4 (my two days of feeling bad), Day 5 – Next Round (bounce back to normal routine). I wasn’t sure what my physical reaction would be to the drugs. I kind of assumed that since I didn’t have a lot of morning sickness with my pregnancies that I wouldn’t be vomiting. Other than that, I figured that I would probably just be tired.

Well, as they say, the best laid plans of mice and men often go awry. And, my plans definitely went awry after Day 2. Before that, however, I was following my plans perfectly.

Day 1: Chemo Day. Chris and I showed up at the UCD Infusion Center at 8 AM for our 7 hours of infusion. I was nervous, but really ready to get going with my treatment. I wanted to nuke that cancer NOW. I was prepared with downloaded movies, books, music, cards, and snacks. You would have thought we were going to the beach for a nice relaxing day with all the crap we dragged into the center. The first thing that struck me when walking through the center and watching the various folks come and go for their treatments is that this disease spares NO ONE. There were people there from all ages and stages of life, ethnicities, and circumstances. I was in the Adult Infusion Center so I didn’t see any children, which is probably a good thing because I think I would have cried the whole time if I did. I saw a young man (maybe 18 or 19 years old) with his mom, a young woman (maybe 20 or 21 years old) all by herself for the whole treatment, a sweet older couple in which the wife was receiving chemo while her husband stayed right there by her side through the whole thing, a couple of older professional looking men doing their treatments like regular work appointments — dressed in buttoned down collared shirts and on their phones the whole time, a very elderly lady all by herself looking very tired and very sick, and a young hipster couple in which the husband was receiving chemo while they snacked on Taco Bell.

The entire infusion process took just under 7 hours and was very orderly. My main infusion nurse was soft-spoken and very kind. I recited my name and birthdate probably 7 times (it seemed) as they very carefully administered my drugs. They kicked it off with my cocktail of steroids and anti-nausea medication followed by immunotherapy drugs (90 minutes of Herceptin, a saline flush, 60 minutes of Perjeta, a saline flush and then watched me for 90 minutes to make sure I didn’t need to be rushed to the ER or something). After that, I got my chemotherapy drugs (60 minutes of Taxotere, another saline flush, and then just 30 minutes of Carboplatin). They watched me very carefully through the whole process to make sure my body didn’t freak out over all of the chemical getting pumped into it. I was fine. In fact, other than just being tired from sitting in one place for so long and the room being kind of stuffy, I was surprised by how fine I was feeling.

You are going to laugh at me for what I am about to share, but I think it is funny and meaningful to me. As the first drugs were getting pumping (really, dripped) into me through my port, I put on my headphones and listened to the theme music from Rocky I. As those trumpets were playing that familiar intro, I laid there with my eyes closed and envisioned those drugs going straight into my right breast and knocking the shit out that cancer. I did the same thing when they started to administer the first chemo drug. It turns out that the music and lyrics are pretty perfect for that moment. I plan on doing that at every infusion session. Hey, I’m not above trying new things, including envisioning my cancer getting knocked out just like Rocky knocked out Apollo Creed.

After my Rocky moment, I just relaxed with Chris and played cards, listened to music, colored in my zen coloring book, and watched a movie. The time passed by pretty quickly — for 6 1/2 hours. However, I was happy to leave as this place is an infusion center and not a spa. I felt a little tired and woozy from all the drugs and pretty much just went to bed when I got home.

Day 2: My “chemo plan” was humming along according to my timeline. I had a weird night sleep and ended up taking a Zofran in the middle of the night because I felt some nausea. I had been told to make sure not to let the nausea get away from me so I figured I better take the Zofran. I got up the next morning and felt fine. I worked much of the day and was even thinking of getting on the Pelaton for a quick 30 minute ride when, around 4 PM, my GI tract decided to start to go south on me.

I’m going to overshare here, but I figure that if there is someone reading this blog who is heading into chemo for the first time, the more information that I provide is a good thing. First, let me start off by saying that my oncology nurse had warned me that a side effect of the steroids and Zofran could be constipation. What she had failed to tell me is that I was about to suffer the worst constipation of my life over the next 12 hours. I am not exaggerating. During my second day, I could tell something was up because it kind of felt like my GI tract decided to stop working. It was making some pretty weird noises. I looked up what to do and ended up taking Miralax and drinking Smooth Move tea. I do not know if that was a good thing to do or a bad thing to do because from 4 PM until 4 AM, I suffered. Oh, how I suffered. Finally, at 4 AM, I was granted relief and was able to finally fall into bed to sleep. I felt like I just gone through a war.

Day 3. The train left the tracks that day. There really is no need to do a day-to-day account from Day 3 to Day 10. According to my chemo plan, I had Day 3 and 4 to feel bad and then it was back to work. That was not to be. I certainly felt crappy (pun intended) on Day 3 and 4, but then I also felt crappy on Days 5 -10. The problem was that after suffering from constipation, I swung wildly into the other direction with diarrhea. Let’s just say that there are better ways to lose 8 pounds. After drinking a virtual lake of Smart Water and several days of the BRAT (Bananas, Rice, Applesauce and Tea) diet, I was ready for my GI tract to get with the program.

My doctor finally had to put me on Lomotil to help me onto the road to recovery. I will be honest, I am two weeks into my first round and my insides are still not 100%. I am hoping that by next Wednesday when I start my second round, I will be back to normal — just in time to see what fun my insides will have in store for me. But, at least this time, I will have more tools in the toolkit and I will know what to expect (maybe).

Other interesting side effects that I have noticed have been a super fun bout of eczema on the tops of my hands and knuckles. They are still red and peeling, but less itchy and probably will be fine by next week. At least the itching took my mind off of my stomach cramps. Also, apparently, I am very sensitive to smells at the beginning of chemo. During the first week, I made Chris change our laundry detergent because I found the smell so repugnant that I would wake up feeling nauseous every time he put on a load of laundry. Other repulsive smells included pretty much any food being cooked, especially garlic, onions, and vinegar. One night Sam made Sweet and Sour Chicken for the family (not me). I was upstairs laying in bed with the blanket pulled over my nose, dying from the smell. Needless to say, I ate my plain white rice in my room by myself that night. I also seem to hate the smell of most lotions or flowery smells. At one point, I kicked Sam out of my room when she used some kind of new hair product. I could not stand the smell. My sensitivity to smell seems to be fading with each passing week, but I suspect it will come back after my next round.

FINALLY, after about 10 days of stomach cramps and a weird 24 hour sleep cycle punctuated by a few hours of work here and there, I started to feel like a human being again. Chris commented that it was nice not to see me shuffling around the house hunched over like some kind of old woman. Heck, I thought to myself: it was nice not to feel like shuffling around the house hunched over like an old lady. Over the weekend, I enjoyed sitting on the back step in the late afternoon sunshine watching Chris and Ben play ping pong and even helped make dinner on Sunday night. By Monday, I actually had the energy and initiative to hop on the Pelaton for a 30 minute low impact ride.

It seems like the only thing that is going according to schedule is my hair loss. Exactly two weeks after my first infusion, I ran my hand through my hair and came back with more than the usual few stray hairs. I just looked down at my hand and thought — Of course! Going bald has to be the one thing that sticks to the damn schedule! I’m considering just shaving my head this weekend to save my family the hassle of sweeping up after me over the next couple of weeks like I’m some sort of dog that is blowing out its winter coat. I’ll be honest, I am not looking forward to being bald. I appreciate everyone’s very sweet and overly optimistic opinions, that I am going to rock the bald look, but I am realistic and I have eyeballs: I am NOT going to rock the bald look. I’m going to look like some kind of wizened baby-person. Like one of the funny spots on SNL when people play babies, but have adult faces. Yah. Hilarious.

During my 10 days of feeling like roadkill, there were some amazing bright spots that I want to highlight. Last week, during Passover, I got a note from someone I am friends with on Facebook. We have actually never met, but share a love of the environment and a passion for its protection. He wrote that, in his role as his rabbi wife’s cantorial soloist at their small congregation in Lincoln, NE, he would recite my name during their healing prayer (the “Mi’shebeirach”). I have to tell you, on April 3rd, when he sent the note and told me that I would be in their prayers that night, I was feeling pretty ill. I cried when I read that. I was rocked by the note. I mean, who knew that there would be a group of people I don’t know in Nebraska praying for me? It was the most wonderful feeling. I still get a little choked up typing this right now.

In addition to the lovely surprise from Nebraska, I received a prayer shawl from my sister-in-law’s friend’s mother in North Carolina with a prayer for my health. I received flowers, notes, a cookbook and a couple baskets of items with things to make me feel better. One of those baskets included Cream of Wheat. Now, you will think this is nuts, but after the last 10 days, I was THRILLED to get Cream of Wheat. That means, I get to add that to my list of acceptable foods so I am not eating plain white rice so frequently. Finally, over the weekend, my neighbor texted me to look out my window and, lo and behold, across the street, they had put up signs in their upstairs windows to cheer me on. I mean, seriously, how lucky am I to have so many friends — heck, people I don’t even know — pulling for me? These acts of kindness are like little power packs that refill my batteries with each act.

Another bright spot has been my family. These guys have been super heroes, particularly Chris. Chris has been the glue holding this crazy ship together in the midst of the hurricane that is the wicked combination of my current health problems and a global pandemic (with a side helping of a global economic meltdown). He has made sure that we have food, are getting meals on the table, and taking care of me — all while he works full time. The man is amazing. I think this last 10 days, though, was a little rough on him. It has been a lot to juggle and it is a 1000 time harder with the pandemic. The kids have also really pulled together. Sam put a chore list together and they have been making sure the house gets cleaned and the clothes are washed. Sam has cooked dinners and they both have washed dishes. Each of them checks in on me regularly to make sure I am OK and have my water. They try to cheer me up when I am feeling yucky by sitting with me and talking. When I wasn’t coming downstairs for several days, my mom would join in the act by coming upstairs in the morning, afternoon and evening to make sure all is well.

I am not going to lie and tell you that my first round of chemo was no big deal. I didn’t like it. Heck, I hated it. Those 10 days were not fun AT ALL. But, I got through it and I’m writing this blog feeling good right now. And, as my family has pointed out, when I was feeling bad, my cancer was probably getting the shit kicked out of it. That made me feel a lot better. Less than one week from today, I go in for Round 2. I’m ready. Bring it on! I have my Rocky theme music, my Cream of Wheat, my tribe of amazing friends and, apparently, people I don’t even know who are praying for me, and, as always, my loving and generous family. What more could anyone ask for in this fight?