Day 2 was a fairly normal day. I felt good enough to drive and took the girls to Toys R Us to get a new toy for each of them. I went it for my first Neulasta shot in the afternoon. Because I was worried about having a reaction, Stephanie and I sat in the infusion room for 30 minutes afterward. And as it turns out, I had zero allergic reaction and zero of the expected side effects! Thanks be to God. Thank you to everyone who prayed for me about that! But by the evening, I was beginning to feel the effects of the chemo.
Days 3-5 were rough. I had a variety of side effects... tingling in my fingers/toes, racing heartbeat, slight nausea, lack of appetite, tastes altered, drug rash, extreme exhaustion, chemo brain, fungal rash, heartburn, constipation, diarrhea, bloody noses, and dry mouth. The exhaustion was intense. I slept around 18 hours each day, trying to participate in life a little, but feeling too tired to sit up most of the time. Most people compare the tired of chemo to having a newborn. For me, it was a little more intense than that. It was like taking NyQuil and having a newborn at the same time. The tired was definitely a "drugged" feeling and you can't just push through. In fact, I know people who say they worked everyday through their entire chemo treatment and I can say, without a doubt, that I will not be able to work everyday during this treatment.
The altered tastebuds and dry mouth became a real problem during this time, as well. In fact, I'm just now starting to get past those side effects. By day 3, my tongue felt like it was completely burned. Like I'd eaten an entire bowl of boiling hot soup and my whole tongue was fried. The inside of my cheeks and roof of my mouth felt raisin-ey. I think that has something to do with the way the fat-soluble cells absorb the chemo drugs. At any rate, it made things taste different. The only thing that really tasted bad to me was water. In my real life, I only drink water, so the terrible taste was a problem for me. I'm supposed to drink 100 oz of water each day and it's been very difficult to reach that goal since day 4 or 5. I've allowed myself to drink Gatorade for 20 oz of the 100 because it tastes good. It's weird, because in real life, I despise Gatorade, but on chemo it tastes awesome! I've discovered that oil pulling helps my mouth feel better, so I've picked that habit back up. For those who don't know what oil pulling is, it's basically swishing coconut oil in your mouth each morning for 20 minutes to help with oral health. I did it through the winter to stay healthy, but this spring I kind of fell off the wagon. Ryan thinks it's purely disgusting, but once you get over the ick of putting solid coconut oil in your mouth, it's not bad at all. I didn't get back to oil pulling until day 11, but I noticed an improvement right away. Next time, I'm going to oil pull beginning day 2 and hopefully the dry mouth and altered tastes fade sooner.
Late on day 5, the diarrhea showed up and friends, this diarrhea is not a joke. It is horrible. I'm sure you've all had the experience of eating greasy food and being in the car when the belly pains hit. And you're thinking to yourself, I'm not gonna make it home. I'm gonna have to stop somewhere. Well, the diarrhea from the perjeta chemo is like that feeling on crack. For those of you who know me well, you know I'm an open book and I share everything. So if the word diarrhea is too much for you to handle, just skip the rest of this paragraph. For those of you who want more details... read on. It starts with gas pain in your lower belly and you've got about 15 seconds to make it to the bathroom before something terrible happens. Sometimes it's just gas and sometimes it's not. Either way, the pain is the same. The kind of pain where you're doubled over, toes curled, rocking, moaning, praying for it to end. After the first or second time, I usually get goosebumps and freeze each time it happens. I think that's from the electrolyte loss. It is absolutely miserable. Completely awful. It's important that all of y'all get right with God because I'm convinced that this is what having a bowel movement in hell is like. I wouldn't wish it on my worst enemy. It is the most painful thing I've experienced and there's no epidural. Just yesterday, I thought I was past the worst of it, but apparently eating pizza like I used to will trigger the beast. I had taken Gracie to her friend's house to play and it started while I was there. I spent like 30 minutes blowing up their bathroom (sorry, Jessica!) and then thought I could make it home. Wrongo-chongo! I ended up in the lowest rung of hell, where really bad people go. I was at a Dollar General in a filthy bathroom, with 2 empty rolls of toilet paper and 8 squares left of the third roll. I honestly didn't even care about the filth or about the lack of toilet paper, I was just thankful I didn't blow up in my car. Friends, it's terrible. I've spent this first round of chemo figuring out how I'm going to live my life around this condition. Taking Imodium kind of works, but I think I'm going to try to the prescription strength next time. It's just a matter of timing the medicine, but still allowing my body to pass the waste. I just know I'll figure out the balancing act, and hopefully that will be sooner rather than later!
Through the first week, the only other annoying side effect was chemo brain. People compare it to pregnancy brain, but apparently I'm a genius during pregnancy. I don't remember feeling so impaired back then. You know that feeling after a taxing day at work? When your husband asks how your day went and the energy it would take to answer the question is more than you can muster? Chemo brain is that feeling coupled with ADD. You can't find the words you want to say and they come out of your mouth in the wrong order. It's weird. And it's frustrating to me. Even having a phone conversation is so much work that it's difficult those first few days. I did not like it at all. Luckily it faded by day 7 and my thoughts were clear. It was so bad that I didn't trust myself to drive. I just felt out of control of myself. I like to be in control of myself much better!
By day 7, I was feeling mostly normal. Days 7-10 are the days where your white blood cells are supposed to be the lowest, but I had been in the house for almost a week and I wanted to get out! So for days 7-10, Steph and I took the kids on some adventures and I just wore a mask. At first I was kind of unsure about the mask, but really, it wasn't so bad. I got some looks and stares, but it was kind of fun to keep people guessing! We went to Kaleidescope and the Moon Marble Company. I made it to a retirement party for some friends. Ryan and I took the girls to a skating birthday party, too! I just wore my mask and had a good time!
Speaking of my girls, I must brag on them for a minute. They're simply lovely. For the few weeks leading up to my chemo, Gracie was going through a thing. She was being sassy and whiny and begging to have her way all the time. You know I still loved that girl, but it was challenging to like her for a bit. But whatever the thing was has passed and she is back to her sweet self. And I couldn't be more grateful! She has been my right hand, without complaint. She entertains her sister and helps with the dog and has asked what chores she can do to help. She hasn't complained about trying all the new meals people are bringing to us. She's actually discovered that she likes everything! She'll ask me if I need to take a nap. This girl is nurturing to the max, always has been, so I think she's thriving in her role taking care of me. And Hattie is handling all this like a champ, too! She's nearly 3 years old, so we're still having those toddler moments here and there, but her heart is pure sweetness. I guess her sister has told her not to wake up Momma because in the morning, if she's up first, she'll come into my bedroom and tell our dog Pixie to "Get off the bed! Momma is sleeping!" Pixie will wake up and those two will run round the house until Gracie or I get out of bed. One morning last week, I woke up and she was quietly playing with her dollhouse. I felt like the worst mother because I didn't even hear her wake up! She's very conscious about my "owie for my port". I still have some bruising around the incision and she is careful not to touch me there. She is such a trooper and lets her sister step in when I can't. Just last night, when my belly was acting up, she brought out the karaoke machine and said, "Momma, maybe we can sing songs while we wait for your belly to blow?!" And so we did! These girls are sassy, selfish, sinful little beings.... just like their Momma. But you know what, they are also sweet, selfless, loving, amazing little girls, too. I'm so grateful that they're still smiling and doing just fine through all this. I could just smooch all over their little faces.... if I weren't terrified of their germs! For now, lots of snuggles and I tell them often how wonderful they are. Gracie beams with pride when I tell her and Hattie acts like, "Duh, Momma!"
I can't leave out Ryan... this guy has become the everything around here. He does everything from shopping to laundry to dishes to taking the girls on adventures solo. I am so grateful for him. Still my favorite time of day is when we finally get the girls in bed and he and I can snuggle and unwind from this new normal way of life. He is the best husband! I guess this is the "for worse" we vowed about on our wedding day 11 years ago! He is a man of his word. For him, I am grateful.
I'm also grateful to all of you who've continued to shower us with love nice things! The dinners have been so, so helpful and so, so yummy! The encouraging cards and texts are so lovely, too. I received the softest, most beautiful towels last week! Love them! And a lifelong friend made me an amazing quilt! I'm telling you, I have THE. BEST. VILLAGE. You all are amazing! Please keep those prayers coming!
Here are updated prayer requests.
- Pray that the cancer has/does not spread to my lymph nodes, blood, or other body parts (we won't know the answer the this question until after surgery)
- Pray that it is clear to the team of doctors that I do not need radiation
- Pray that my faith and the faith of my family is strengthened during this time
- Pray that my belly and the dry mouth are more manageable the next round
- Pray that the chemo does not cause any longterm damage to me
- Pray that I do not get sick during this season of weakened immunity, but am still able to enjoy time out of the house with my family
