I have no idea if I ate, who watched my kids or much of what I did prior to arriving at my first Chemotherapy appointment. I do remember preparing. Packing the perfect chemotherapy bag and preparing for any possible scenario by filling it with as many activities as I could find myself wanting. I had stuff for drawing, fidgets, a heating pad, a blanket, frozen gloves and booties to help with neuropathy, lotions, chapstick, candy, gum, snacks, water, and a few other things that I can’t quite remember. I prepared my newly placed port by slathering the skin over the port with a prescribed topical analgesic to numb the pain of literally getting plugged into. I was told it was painful if I didn’t numb the area and I was keen to avoid unnecessary pain so I took this part seriously. I tried to wear clothes that felt comfortable and made it easy to access my port without causing pain to my fresh bilateral mastectomy and reconstruction.
Chris and I snapped this picture of us sitting in the waiting room. I remembered I wanted to document things, even though I was so overwhelmed. I didn’t record and video though. I probably didn’t know what to say and decided that pictures would suffice. It felt like I was having an out of body experience and I was watching myself in a movie, not real life. I couldn’t believe that I was the one who was getting chemo. Me.
I simultaneously wanted Chris with me and didn’t want Chris with me. There was something about this experience that despite being terrifying also felt sacred. I was unsure about sharing that with anyone, even Chris. Facing this fear felt holy. I didn’t know I would feel this way but a significant part of me wanted to keep this experience private, something that I should do without worrying about anyone else. Building up to this I was so afraid to face this fear alone. I thought I needed Chris to be with me, but when the rubber met the road I realized I wanted to do it alone.
I probably should have sent Chris home, but there was a small part of me that felt bad for wanting him gone. I didn’t want to hurt his feelings. Even if I did ask him to leave, I wouldn’t have known why I was asking, other than the sudden urge to be alone. At that point in my life I decided that that wasn’t enough to ask Chris to leave. Chris is my best friend and the love of my life, so having him around wasn’t bad it just turned out not to be what I needed.
We got called back to the infusion room and I went into my usual mode of getting to know the nurses around me and making small talk when it was appropriate, cracking as many jokes as I could naturally fit into conversation, always self-deprecating humor or a funny observations. I tried to answer the deluge of questions that were coming at me but my brain was malfunctioning and basic facts about myself seemed like a mystery. I gave one of my kid’s birthdates instead of mine and only realized that fact after the nurse gave me a confused look.
I had my pick of a seat in a room filled with recliner and side table stations. Every station had a trash can, tissue box, a pillow, and a pile of magazines in an accessible location. It was weird picking the seat, I wished they had just brought me to a free chair. I felt decision paralysis grip me and I walked in a direction. Eventually I found myself at a recliner and putting my things down. I sat down and my feet couldn’t touch the ground. It made me like a child, like I wasn’t grown up enough to face this kind of a trial, yet here I was at 39 sitting in the chair with my feet dangling where I was about to start Chemotherapy. I wonder what I was saying in those moments, because I know I was talking, I talk when I get nervous and I was really nervous. The nurse brought over a folding chair for Chris to sit on. I noticed the stark contrast in their interest in keeping me comfortable and the metal chair offered to the non-cancer patient. I deserved the royal treatment because I was about to suffer due to my time in that cushy recliner.
A table that looked like a small tool chest was rolled over to me and the nurse began preparing my port to connect to it. I moved my shirt out of the way and she wiped away the prescribed pain cream and sanitized the area. The cold of the alcohol was shocking. Prongs were about to pressed through my skin to connect to my port. The nurse did just that and I was officially ready to receive chemo. You can see the sadness in my eyes in this picture.
I didn’t know I felt sad in the moment, all I felt was scared. I was coaching myself in my head, mentally preparing for every next step in the process.
“You can do this, Emilie.”
“They are going to do another thing that will hurt and you can do this.”
“You’ve gotten you through every hard time and you’re going to get yourself through this one”
“You’re so good at doing things scared.”
“You just did that! That sucked and you did it!”
I have never been so actively there for myself. I knew what I needed to hear and I told myself exactly that. I was with me in the way I needed to be with. Chris would have never been able to encourage me and cheer me on in the exact way I needed, only I was able to do that. I loved myself exactly as I needed to be loved. I’m so proud of myself for that.
Maybe that is why I was surprised by my desire to be alone, because I subconsciously knew I would be enough for me. I see it now for what it was, a woman loving herself.
For the first infusion I had to wear these ridiculous ice packs that were shaped like gloves and booties to protect the nerves in my extremities. This was probably the worst part of the actual infusions. I was miserable with ice on my hands and feet. I put on a podcast to distract myself from my freezing fingers and toes. I closed my eyes and tried not to think about the life saving poison that was coursing through my body.
After the first infusion was done I was able to rip off the frozen gloves and booties because the second infusion wasn’t as mean to my extremities. Things felt a little less unbearable after the gloves and booties came off and I think I probably talked with Chris but in all honestly, we were both trying to disassociate from the experience by staring at our respective phones.
The second infusion was over and I was disconnected but required to stick around for another hour so they could keep an eye on me just in case I had an allergic reaction to the Chemo. That was such a long hour. I was filled with adrenaline because I had just done something really brave. There was a dopamine hit when it was over because I was so proud of myself for doing it! I felt good. It felt sacred because it was sacred. I had just done something holy, I got myself through something scary.
The end of the hour had come and I had one more obstacle before I could go home. I had to have a Neulasta injection box attached to my stomach. This injection box would inject me with a white blood cell stimulator 20 something hours after my chemo. It was either this injection box or I’d have to come back the next day to get the injection. I knew I wouldn’t want to leave my house the next day and the injection box felt like the lesser of the two evils. It was really weird having that thing on my stomach. Here’s a picture of the situation.
I was finally able to go home and I went straight to bed. I was at the exhaustion part of “after you do something brave” thing and my bed was all I wanted. Everything else from that day is a blur and I did not feel good anymore. I felt bad, very bad. This confused me because I was told that I would probably start to feel bad two or three days after my infusion, but like everything else I was the exception to the rule and I felt bad pretty quickly. There was a terrible taste in my mouth. I’m told that is common. It makes sense that the poison that was saving me would seep into my salivary glands and produce a putrid taste. Everything tasted so bad. I hated eating unless it was a very specific thing that I thought up. During this particular round my certain food was Cream of Wheat. I remembered that I had had Cream of Wheat the morning after I had the boys. My body was ravaged by pregnancy and had been sliced down the middle to deliver 31 week old babies. The breakfast I ordered that morning after I delivered the boys is a meal I will always remember, it was Cream of Wheat with butter, milk, and sugar. It was divine. Now, after chemo, I wanted a bowl of Cream of Wheat so bad. I sent Chris on a mission to find me Cream of Wheat. I needed Cream of Wheat. Chris came home with the goods and started making me my bowl. This was risky and I knew it. I love Chris, but there was no way he was going to be able to replicate a bowl of Cream of Wheat that lives on in my mind forever. Well, to cut to the chase, he did not achieve even an edible bowl of Cream of Wheat. He tried, he really did. I would have just made it for myself but the chemo brought with it this crushing fatigue. Walking to the bathroom felt herculean, there was no way I was going to make it down the stairs and up again. I guess I could have had Chris carry me down, but I didn’t think of it at the time. I think I settled for buttered toast and ate that exclusively for a couple days.
As stated above, the fatigue was crushing and I have never slept so hard. When I closed my eyes I envisioned my body sinking into the bed because the fatigue was pushing me down. My bed head was epic. I wasn’t as good at documenting things during the chemo stage of this fiasco but I did manage to take these pictures of my bed head. This was pretty much what my hair looked like for the 5 days after the infusion.
There is one noteworthy thing that happened while I was sick the weekend after my infusion. I’ll set the scene. This was the first rodeo with chemo and nobody, especially me, knew what to expect. Chris was overwhelmed with childcare and caring for me so when the neighbor invited Jojo over to go play he said yes. These neighbors are so great and so patient with Jojo and we feel comfortable with her staying at their house for a couple hours. While Jojo was at their house, I was in bed feeling like death and scrolling on the socials when I got notification after notification that my Apple Pay was being used. I was so sick that I was nothing but confused. None of it made sense to me, it was like I was reading nonsense words. My brain said “nah, that’s not real” and I went on doom scrolling trying not to puke. I have no clue when I actually figured out what happened, it had to have been at least a couple of days after, but when my brain started to function enough to remember that I had strange apple pay notifications and I investigated I realized that Jojo had spent $500 on Roblox and other games. Want to know what I did? I laughed and I laughed hard. I laughed the kind of laugh that leaves you feeling bright afterwards. It struck me as hilarious that the weekend after my first Chemo infusion Jojo figures out how to get past all the parental locks and what not and spends $500 on virtual worlds. Something had to go wrong and this was the thing. I asked Jojo about it and she immediately fessed up because she had no idea that she had done something wrong, she didn’t have a concept of what $500 is, she was just happy she and the neighbor kid hacked the parent protections. I was able to get half of it back from Apple, but they wouldn’t reimbursed the Robux because my darling daughter had somehow already spent $250 worth of Robux. How? I’ll never know but she had to have been buying everything! Chris and I still laugh about it and call it round 1 sunk cost. Sometimes you’re just out some cash. It could have been worse.
Maybe it’s the fact that I was fighting for my life, but loosing money just didn’t feel like a big deal. I had just done one of the scariest things I’ve ever done and I was wrecked with sickness because of it, money felt too trivial. I know that I have a certain level of privilege to even say that and I don’t take that for granted in the least bit. I’m just saying that fighting for my life felt like a better use of my energy than loosing it over a mistake that children make in this digital world. I will say that Jojo did learn a lesson about how money works and it seems to have stuck. It was one expensive lesson but aren’t most?