Hello Team! So many of you have reached out to check-in with me over the past week to see how my first inpatient chemo experience went and I am so grateful for all of you. Seriously, you keep me going on my hardest days. I apologize if you caught me in a moment I needed to vent because (there were many of them over the past week and a half) or in a moment I was too tired to respond.
I am just now starting to wrap my brain around what I just went through. The plan was to start treatment on Tuesday morning, Jeff took off work and was going to take me to Baltimore to spend the first day in the hospital with me but of course, plans are silly in this world. Instead, the hospital called Monday night to say a bed would not be ready for me until late Tuesday night. I was bummed because Jeff had to get back to Richmond so it wouldn’t make sense for him to come. Instead, on Tuesday, we slept in and made a big breakfast, and were about to head to the gym when the hospital called and said: “never mind we have a bed, how soon can you get here?”. Frustrated, I said goodbye to Jeff and my Mom and I headed to Johns Hopkins and were at the hospital by 2:00 PM.
When we got there the nursing staff was great and in terms of hospital rooms, the place was decent. It was large, had a table for puzzling (or eating I guess), a view of the city and a private bathroom. All these things help when you are trapped in a room for a week. The only problem was treatment couldn’t get started. I guess I convinced my doctor I already had an echocardiogram within the year when really we now think I only had an EKG. In my defense, nobody should trust me to know the difference. So Tuesday night was kind of a wash because we had to wait until Wednesday to get started. On Wednesday morning I did have an echocardiogram which, for those that do not know, is an ultrasound of the heart, (different than when they just stick the little tabs on you to read the electrical rhythm of the heart) Now you know. It took all day for them to read the report from the echocardiogram (it was all good they were just busy), hydrate me, and mix the chemo so I didn’t actually start getting treatment until late Wednesday night.
In the meantime, I had lots of visitors who kept me laughing and entertained, I took many walks around the 4th floor which I was restricted to, and I was generally in good spirits. However, the chemo did not take long to set in. Friday morning started with an overwhelming sense of fatigue. I realize now I have never really experienced fatigue until this past Friday. I remember just feeling like it was hard work to breathe, everything took extra effort, moving, thinking, reading, breathing, everything. It honestly scared me and affected me mentally. It’s like you know you’re teetering on the line of life and death. But thank goodness for steroids because around 4 pm on Friday they gave me some and I was able to socialize and eat a little before the next side effect kicked in.
(Katie, molly, Keith and I did actually finish a puzzle 🧩)
(Keith came twice to make sure I’m really watching GOT)
Nausea hit Friday night and didn’t end until mid-Monday. I spent Friday night curled around a bucket trying various nausea meds with little relief. While my stomach did not stop churning until mid-Monday, some of the medications were effective at putting me to sleep which was helpful. I slept most of Saturday and Sunday. The good news is I was anticipating lots of scary side effects that never happened. If someone would have told me the worst of it would be fatigue and nausea I would have thought “no big deal”. But it was a big deal, staying in a hospital room for 5-6 days alone is a challenge, I was sick of the 4th floor and desperate for fresh air. By the end, I was so sick of fluids running through my body, the smell of saline coming out of nose would make me dry heave uncontrollably.
(Katie came with eye masks for a little spa moment)
But then Saturday rolled into Sunday and I was home in my own bed. I could shower and I didn’t have to smell my own medication-reeking urine collecting in the bin over the toilet (seriously awful).
It is Wednesday now and really the first full day I’ve been able to eat normally. I feel like myself again. My hair is starting to fall out already probably because I did the oral chemo first so I’m going this Friday to get it cut off. I’m sure it will be emotional when it happens but right now I just don’t want to worry about it anymore. It’s one more thing that needs to start so it can end.
It’s hard to look ahead and imagine having to repeat this experience 5 more times this summer so I won’t. I will get through this summer one day at a time. While it was awful, the important part was I got back to myself in the end and I will continue to do that. Everything I went through this past week was temporary and it’s amazing how my body eventually bounces back. For now, I am looking forward to a full week of eating, sleeping, and hanging with family and friends.
Thanking you all for sticking by my side ❤