My room is large and private. I have my own small (very small) TV that gets lots of channels and my own bathroom and sink. However, no shower. This I have to share communally with the rest of the floor. I've asked my mom to bring back flip flops for me as this reminds me of college days and I'm a little skeeved about going in there barefoot.
I have a huge window that runs the length of the far wall through which I was able to watch the chunky snow flakes mixed with soothing rain throughout the day. Signs of healing. It seems there will be mixed winter weather outside the window for my entire stay here, but I actually think that's more tolerable than bright sun would be as in this type of weather I feel like you're supposed to be cooped up and cozy. The sun would only make me ache to be outside soaking it in.
The care has been nothing short of extraordinary. And I'm not just saying that because I work in the marketing department, really. I've been truly impressed by the resources, the attentive care, all the offerings. We've been flooded with helpful pamphlets and printouts with details on each of my drugs. We had a visit from a social worker to talk about finances. A nutritionist is scheduled to stop by at some point. Craig was given a rickety but mildly comfortable cot to stay the night in. There are no limitations on accepting visitors or having sleepovers. I'm signed up
for a "wellness fitness class" Thursday morning with the other patients on the floor. Volunteers will be coming by to give me a therapeutic Reiki session each day, and I was even given a gift certificate for a massage scheduled for 11 a.m. Thursday right here in my room, paid for by a generous grant from an organization called Angie's Spa that has partnered with the Gray Cancer Center. All of these pieces certainly balance out the bad. It's *almost* like our Sandals honeymoon. I can get plastic canisters of oj and cranberry juice or mini cans of gingerale whenever I want it and Hood ice cream cups are available on demand! My bed moves up and down and I can adjust my foot and back positioning with ease.
My nurse, Susan, was with me all day yesterday and she was so thorough and thoughtful. The first step was to access my port yesterday morning. It's all done under a lot more anti-infection protocol here as an inpatient. She wore a mask, gloves, a gown, and I had to turn my head during the insertion. The needle went in beautifully and now it's all covered and taped and nothing that I have to worry about for the rest of the stay. I can even shower with it accessed after they cover it with cling wrap.
The day progressed with a whole lot of waiting, but Craig was with me all day, and we kept busy taking walks around the oncology/palliative care unit (with my IV pole in tow since we are now attached), reading, napping, playing games, etc.
Late morning I took a drug by mouth, Allopurinol, that will lower the amount of uric acid in my blood and protect my kidneys, which can be damaged by one of the chemo drugs. Then at about 5pm came the nausea blockers, also by mouth: Zofran, Emend, and Decadron. It wasn't until 6:30pm that I started the chemo drugs. I'm told this is because the pharmacy mixes all of the outpatient chemo first since the cancer center closes at 5pm then they tackle it for us inpatients. After they mix it the drug bags go through four different check points to verify accuracy, so it's understandable that it took a long time.
Susan was detailed in explaining what the effects of each of the drugs would be. She went over everything about the amounts I was being given, how long each would take, matched it up to my ID number and told me that I should feel no differently than I did before she started dripping them in - and if I did, to let her know right away.
The first was the Etoposide (E). It dripped into my port for one hour. Then came the Ifosfamide (I), which dripped for three hours. With such a late-day start, this meant that I received chemo until after 10:30pm last night. The Ifosfamide is the one that is nearly double the dose a normal adult would receive as part of the pediatric protocol I am under. The Carboplatin (C) won't come into play until Thursday when I will receive all three ICE drugs. All the while that these are dripping, I receive IV fluids as well. It's extremely important that I drink a lot even on top of that to flush out the residual tumor particles that the drugs are smashing through. I get to pee in what's called a hat in the toilet so they can monitor my urine output. They're watching all of my bodily functions very closely.
All yesterday I felt great. My parents arrived to visit for the evening just as the chemo was getting started. They joined Craig and I as we watched Jeopardy, chatted and laughed and ordered in a couple of pizzas from J Restaurant/Bar just across the street - they deliver right to the floor! I was so hungry from the anti-nausea drugs and steroids. I powered my whole penne pasta florentine with chicken hospital meal then 4 pieces of pizza. I guess my appetite isn't affected. However, Dr. Dailey warned me this morning that I might want to tone that down as the stomach upset may still be on the horizon. I did some laps around the unit with my parents and showed them the lounge area where there's a big fish tank, comfy couches, and a pantry with food and drink up for grabs. I'm grateful that I'm able to walk around and eat whatever I want. I really have no restrictions.
It wasn't until about 11 a.m. last night when I started feeling crappy. I all of the sudden had a huge wave of nausea, complete with that hot, scary feeling. Way worse than I ever got with the ABVD chemo. Sweaty all over and head spins and that awful awareness of my throat sphincter. I thought for sure I was going to vomit. I called for the nurse and she was able to administer another anti-nausea drug which Dr. Dailey had ordered in anticipation of this reaction (God bless him) to be given on demand. It worked well and had the dual effect of knocking me out to sleep which helped everything. The night nurse said she tried to wake me up and I wasn't budging, even with a shove, so I guess I slept deeply, at least for a few hours. But then I was woken every three hours to receive Mesna, a drug that also drips into my port for 15 minutes and will protect my bladder from damage that can be caused by the chemo drugs. I got the last one at 6 a.m. and have been up ever since.
Today, same routine. My sister flew in from Cali late, late last night, delayed by the snow, and her and my parents are currently sleeping at my house and taking care of Sammy. I can't wait for them to arrive later this morning. It'll be great to see her! Craig is also taking a half-day of work and will be back to be with me later this afternoon. Even if we're not talking or all doing our own thing it is great to have others around me, so that I don't feel alone, especially when my IV tether puts things out of reach. Even though I can unplug it from the wall, it's not exactly dainty and the spider-like wheels don't make it into tight spaces to reaching things can be difficult. It'll be a good feeling to be detached on Friday. But until then I know that it's feeding me life-saving meds so I'll deal with it.
Another video produced by my talented husband. We found some creative ways to pass the time. I wonder what we'll be doing on day 4, eek: