Originally posted May 20, 2016
I had planned to write another update from the hospital. And then when I got home last Wednesday afternoon after my early discharge. And then the next day… and then over the weekend… and now nearly another full week has gone by. Ah such is life. Somehow my to-do lists seem never-ending, and insomnia makes everything just that much more difficult/ time-consuming. There are SO many things to keep track of, so many things to do, so many things to think about… every detail of my life requires careful consideration. Truly life-altering. And I’m officially super high-maintenance. I was hoping I’d recover from the extreme sleep deficits I suffered while in the hospital once I was home in my comfortable bed, but sufficient sleep eluded me until just the past two nights. Solving this problem added another thing or three to the to-do list… finding a remedy that works was top priority. So far, my new combo seems to be working so fingers crossed… For now, I keep meditating, reminding myself to take deep breaths, and focusing on keeping things simple… just one thing at a time. One day at a time.
So, backtracking to the rest of my hospital visit for round one: in all honestly it went as smoothly as it possibly could have, sleep disturbances aside. Easy breezy. Yay! Unfortunately, those sleep disturbances are part and parcel of any hospital stay. But otherwise my first round of chemo, and first ever hospital stay, was ‘boring’…. boring in the sense that medically, everything went super smoothly. So in this case, boring is good. My Doctor agrees. Medical considerations aside, my stay was actually anything but boring. Sunday was the first morning I woke up hooked up to an IV, and marked the start of my hospital morning routine: get woken up by vitals and bloods at about 6, stay in bed, get ‘woken up’ again by the nauseating smell of the hospital food cart and then delivery of my ‘breakfast’ from the food attendant (I ordered green tea and a banana) at about 7:15, then my morning meditation followed by prayers and gratitudes, then remove my ear plugs and unfurl myself from the cocoon of the curtain, window shade and sleep mask, teeth brush, a couple ‘laps’ around the floor, fill my pitcher with the filtered water in the common room, daily weigh-in, then cozy up in my ‘sitting area’ next to the window with my own breakfast – berries and avocado toast or the banana with gobs of almond butter. Always berries. Lots of berries. And then the nurse comes to deliver my morning meds – 6 pills in total.
And then the day is punctuated by a slew of check-ins… later in the morning the PA and oncologist on duty typically pop in. Then the inedible lunch delivery, which I ignore other than the green tea. And the nurse will come back with lunchtime meds. And housekeeping will come to clean. And more vitals. And maybe another pop-in by the PA. And when my pump beeps (oh so very loudly) the nurse will come again to change the chemo bag, and then I get my one opportunity to take a very quick shower, so I quickly gather my shower essentials and decide what shirt I will wear for the next 24 hours. Because I will not be able to change it once I’m hooked up to the chemo bag. Once I’m showered, moisturized, and changed, which takes at most 10-15 minutes, the nurse hooks me back up to the new bag. Then later on, maybe the nurse has to come again because my pump beeps because there is an upstream or downstream occlusion in the IV tube. I quickly learned to turn off the beeping and fix the occlusions on my own, so I wouldn’t have to call for the nurse and wait for the beeping to subside. And then dinner delivery, another check-in or two by some staff or other, nightly vitals and meds (11 if I’m lucky and they do me first…given my sleep issues they tried to), and the whole process begins again the next morning at 6 (again, if I’m lucky and they save me for last). Two nights I was woken up by loud beeping at 2:30am – almost exactly the same time but for different reasons. Once was because a nurse had forgotten to plug the vitals monitor back in. I was somewhat, well, displeased, the next morning, because guess what, I wasn’t able to properly fall back asleep.
On top of all these interruptions are the things I must remember to do or must deal with myself. After each meal, I must rinse my mouth with Biotene, an over the counter dry mouth rinse, to prevent mouth sores. Another side effect. (None yet). And *if* they do develop, I will also rinse with my Magic Mouthwash. Yes, that is the actual name. I must remember to moisturize and hydrate because of the meds and drying hospital air. When I do shower, I must wrap my upper right arm with plastic and even then hold it out of direct water shot to protect the PICC. And every time I want to go anywhere that is not directly next to my bed, I must unplug myself from the wall, loop the cord on a hook high on the IV stand and make sure the IV tube isn’t hanging too low so it gets caught under the wheels or I trip. Then I push the unwieldy IV stand wherever it is I need to go. Including the loo. Then when I’m done puttering around I must remember to plug it back in, because the battery packs are worse than the batteries on smartphones. They last a few hours at best. I must also remember to walk laps around the floor to get at least some form of exercise. I power down the hall, iPhone and headphones in, talking or listening to music, or walk along with the visitor who’s there at the time, constantly trying to avoid the food carts/ machines/ beds/ people/ other IVs and whatever other obstacles there are in the halls. It’s always an adventure. And when I’m done, I must remember to plug back in, and which plug I use depends on whether I want to sit by the window or sit in bed. Because I’ll have to situate my table and belongings accordingly within reach. Daily life in the hospital.
This particular stay happened to be Mother’s Day weekend, and Sunday morning the sun finally started to cooperate and began to peek through the clouds. I had a quiet, leisurely morning sitting next to the window, gazing out over the river, soaking up the warm rays. Yes, I was very fortunate to have large windows with a view of the East River. It is not, perhaps, the most picturesque river view, but I was beyond thrilled to be able to look out onto a body of water. Just as my first chemo bag was being changed, my friend Ana suddenly appears from behind the curtain – complete surprise! I had no idea she was in town so it was an extra happy surprise. She’s my super smart doctor friend who helped me interpret the original CT scan report – from the getgo she was a huge support and really helped me through the initial terrifying whirlwind. I told her about another patient, the ‘walker,’ who was diagnosed only after he was admitted because his lung had collapsed. Only then did she tell me what ‘narrowing of the left mainstem bronchus measuring with minimal luminal diameter measuring 3mm’ actually meant: my left lung was basically close to collapsing. Thank goodness she didn’t tell me that before. My right was clear and compensating so I had just enough leeway to take care of the egg freezing, but now I fully understand why my doctor was really pushing me to get in for treatment asap! My sister arrived soon thereafter, and we broke out the adult coloring books (I have maybe years’ worth now… lol). Mother’s day was in the hospital – dinner consisted of takeout salads, platters, and sandwiches… fine dining at its best. Mom loved her hummingbirds and my sister and I felt like we’d time traveled back to when we were, I don’t know, maybe 5 and 8 years old? Memorable Mother’s day to be sure.
More visits by friends and family Monday and Tuesday. My sister’s work is being incredibly understanding and is allowing her to ‘work’ from the hospital on days I’m in for treatment. She’s honest – I promise! 🙂 But they’re being wonderfully understanding and flexible, so she has been there every day of treatment. And it is certainly extremely convenient that she is just a 10 minute walk from the hospital. One incredibly positive outcome of this experience is that I have reconnected with so many people from my past. I had a visit from a BC cheerleader I literally hadn’t seen or spoken to in a decade – it was SO wonderful to reminisce and catch up. She’s doing fascinating things and I am so lucky to have such amazing people in my life. Going through a challenging, life-altering experience also has a tendency to strengthen relationships with close friends and family. Clearly my family has been incredible. My closer friends have also stepped up in tremendous ways and I am so incredibly grateful for their support – I seriously have some of the best friends in the world! Even the strongest person in the world couldn’t get through this on their own – support from family and friends is so essential.
The chemo went so smoothly that they decided to speed things up for the last two bags, which meant I was able to get out of the hospital earlier than anticipated! Rather than later in the day on Wednesday, I was good to go first thing Wednesday morning. Of course, packing up and sorting through the discharge papers took a while, but I was out by mid-morning, and I was oh so happy to leave. No tubes, no stifling hospital air, just freedom, fresh air and sunshine. What more could a girl want!?