Since round 2 chemo got delayed until March 9 (instead of starting today, March 8), I figured that this evening would be a good time to finish that promised post about how chemo went. TL:DR inpatient chemo is so much rougher than outpatient chemo was.
I did report to Hopkins in the evening on Wednesday, February 15. We were lucky and our friend, Patrick, met us there while we were settling in to make sure that we got a delicious dinner from Atwater’s (best cheddar biscuits ever). He also then told dog stories to help distract me (Jarrod was also showing me videos of my nephew, but I needed a lot of distraction) while the nurses tried to access my port for the first time. Apparently the first time accessing the port is always difficult, and because my surgery was so recent, there was still a ton of surgical glue on top of where they needed to insert the needles. It was not a painless procedure, and Patrick has my and Jarrod’s eternal gratitude for helping us out and keeping me from screaming. I’ve been assured that the next time it won’t be nearly as difficult and painful to access, thankfully.
The first night was easily the night that we got the least sleep. This will be normal for my inpatient chemo. There are blood tests to be done while my chemo is mixing. Then there a lot of pre-chemo meds (things that protect some of my organs or avoid dangerous side effects) that they have to get through first, before they can even get the actual chemo drip started. In addition, there’s also a huge amount of various hydrating mixtures that they send down the tubes. Every single change that first night requires me being awake, even if I could sleep through having the bags changed. Our nurse was lovely and wrote down the approximate times she’d be coming in to change my bags so I’d at least know what was going on and have a sense of when it was best to nap. Jarrod was a total trooper, too, and helped me not freak out at it all. I think the longest interval of sleep we had was almost 4 hours long. Thankfully, I was able to get more sleep the other nights. The cumulative effect of all those medical fluids started to be seen by the morning, even though I didn’t actually get my first “chemotherapy” med until around 4 a.m. All told, between around 6 p.m. Wednesday and 7 a.m. Thursday, I had been given so many fluids that I had gained 1.26 kg!
Thursday wasn’t too bad. I was mostly pretty tired, but not nauseated or anything. I was glad that we had packed face and body wipes though. Because my central line was in the entire time I was in the hospital, I couldn’t take a real shower due to fears of getting it wet (getting a central line wet is apparently a Very Bad Thing). Between being able to change clothes though (yay for button downs!) and use the wipes along with rosewater spray from my friend Amina meant I felt somewhat human at least. Jarrod also decorated the hospital room with some pictures and things we had brought. My favorite was a handlettered print our friend Christy made with a quote from my final birthday email from my dad: “Your spirit remains indomitable.” Looking at that helped me feel more indomitable and less scared. Seeing friends definitely helped. One made a handlettered sign that we added to the wall of awesome to keep up my spirits. Do not underestimate what it means to have someone make you laugh when you’re struggling.
Friday wasn’t too bad, although as the day went on I got more tired and developed less and less of an appetite. I also had a near accident with the IV stand. See, it has wheels to make it easy to move it around. However, the restroom has a slanted floor with a drain in it. That slant combined with wheels that don’t have locks led to me lunging for the IV at one point in fear that it would roll too far and pull on the tubes attached to my chest!
Saturday was when the nausea started to really hit. It was just about 7 a.m. (I happened to glance at my phone). Jarrod and I were talking and I suddenly almost doubled over with nausea. Despite the medical team’s best efforts, the nausea didn’t abate at all until that evening. Our friend Annie visited on Saturday and essentially read funny internet essays to me while I dozed in and out of consciousness feeling miserable. I felt a little better in the evening and was able to take Communion when Jarrod’s old teaching parish pastor visited. He has a parish in Towson, just outside Baltimore, and was one of the pastors who helped celebrate our wedding, so it was good to see him, and felt very healing to take Eucharist. I also got to Facetime with my Grandpa while my two-year-old nephew visited him in Indiana which was a total blast and completely lifted my spirits.
It was good that it did because I soon felt nauseus again and sleepy. Despite going to bed early, I still felt exhausted and super nauseated on Sunday. Even when we went home, I felt gross. That continued through Monday when all I could stand to eat was raisin bread. Tuesday I got very brave and added peanut butter banana smoothies that Jarrod makes and are super soothing to my stomach, as well as high in the protein needed post-chemo. I still wasn’t feeling great, but was getting progressively better until Thursday evening when (as expected from my neulasta shot) my joints and bones started to ache so I had to start taking my oxycodene again. That continued through Friday, but at least the oxy kept the pain pretty manageable. My only other awful side effect was increasingly bad heartburn that finally lead to a recreation of an exorcism and Jarrod calling the on-call line to ask for advice. They were able to suggest an OTC that we hadn’t tried. Jarrod ran to the pharmacy two blocks away, picked it up, and by the next morning (after an uncomfortable night spent literally sleeping sitting upright) I felt better for the first time in days.
Saturday evening I felt good enough that I planned to go to church the following morning but that went out the window completely when I woke up at 4 a.m. on Sunday with excruciating pain throughout my entire jawbone. I took meds, grabbed an ice pack, and managed to fall back asleep again for a bit but woke up again in horrible pain around 7 — well before my oxy should have worn off. Jarrod called the on-call line where they seemed stumped, but suggested doubling my oxy and calling back on Monday if I was still in pain. Well, doubling the pain meds didn’t do a darn thing and I had a miserable day. The pain finally abated a tiny bit in the late afternoon — enough for me to see my nephew which was wonderful. It did mean that all I could eat that day was smoothies and a milkshake. I added soup on Monday when the pain had gone down a bit and I could fit a spoon in my mouth without crying. Tuesday we got really brave and added super soft mac and cheese. I didn’t really eat solid food until Thursday. I’m hoping that side effect does not make an appearance this round!
Friday of that week (so this past Friday) we spent the day at Hopkins talking with lots of doctors, nurses, and even a pharmacist. We made plans to adjust things and add a new medication for this round that should help the nausea. No one there really had a good explanation for the jawbone pain other than “it’s not dental” and “maybe the neulasta?” My accupuncturist said that it might be related to the nausea and heartburn I’d experienced since, if I understood her right, if the digestive system is unsettled enough that can lead to intense heat which can be experienced as pain along a meridian that affects the jawbone. So, hopefully now that we have a better plan for my nausea and heartburn, those will be under control, and I won’t have the excruciating jawbone pain.
That said, I’m still really nervous about tomorrow (and not just because the bed still isn’t a 100% guarantee) and the coming days. I’ll keep saying my prayers, remembering how much my family and friends believe in me, watching MLP: Friendship is Magic when I’m miserable, and reading good books when I can focus. I think that’s essentially taking the next right step and trusting in God. If not, I’ll pretend that it is.