In & Out of the Hospital

At my regular doctors appointment on Tuesday, pre-chemotherapy treatment, my support system (aka my parents and John, my boyfriend) sat down with my oncologist. Dr. Shah, my oncologist, after being stumped by why I keep getting admitted to the hospital with a neutropenic fever, brought us a few options.

In Dr. Shah’s work as a cancer doc, he’s worked with a number of patients from young like me to elderly patients. In his elderly patients (80+), he’s tried and been successful with giving only half of a chemo dose with a Neulasta shot after each two week half-dose. Doing this instead, the chemo doesn’t effect the body quite as much, so the hope is that I won’t get neutropenic at all because the medications aren’t overpowering my system. Although this means chemo will last a little bit longer, it’s a small price to pay if I don’t have to get admitted into the hospital again. Going with option 3 sounded like the right way to go, because the only risk really Dr. Shah mentioned was they aren’t sure if it is quite as effective as full dose chemo. But because my cancer is pretty much gone at this point, I’m still getting the rest of my chemo, just split up a little bit.

Especially after the last hospital stay, which spanned 12 days, I will try just about anything not to get admitted into the hospital again. Not only is it a depressing place, I can’t even imagine how much debt I’m accumulating through these hospital stays.

Each cycle of chemotherapy has progressed in the same way. Week one is the worst symptomatically, where I typically have my worst days out of the cycle. Week two is spent in the hospital with a neutropenic fever, which doctors have yet to figure out why it continues to happen, and the amount of time spent admitted increases each week. Week three in the beginning was my rest week, the week where I felt at my best. But now, I barely have a week three. My last hospital stay spanned 12 days. 12 days of fevers, getting pumped with three different types of antibiotics that obviously weren’t working to get rid of them, and up and down blood work that prompted infusions of potassium and magnesium, as well as my first ever blood transfusions.

The first few days of admission are always good. I obviously don’t feel great when I get high fevers like I had been, so being taken care of during that time is nice. Also, because my white blood cell count gets so low, meaning my immune system basically goes away, the hospital is the safest and most sterile place for me to be. Basically, I don’t mind being in the hospital the first few days. I have loved basically all the nurses that I have had in my time admitted, which helps a lot.  But three days in the hospital is nothing compared to 12 days in the hospital, and as the days add up, the worst it gets.

I don’t have too many visitors usually while I’m in the hospital, mostly just family and some friends, but this past time I was lucky enough to get to see some of my best friends, as they were on spring break, and even my aunt who I haven’t seen in months. My parents come daily, sometimes bringing me dinner (anything is better than hospital food) or anything I need from home. My boyfriend comes often, just spending time with me and letting me subject him to very musical Disney movies. My sisters often take time during their lunch breaks or after work to see me, my sister Rachel spoiling me every time by bringing my favorite drink from Starbucks and even an extra one for the next day, and scratch off cards to keep me busy.

But, majority of the time I’m alone. I don’t mind it, since the longer I’m stuck in the hospital, the more tired and irritable I get. Usually around day 6-7 I start to develop what I call the “hospital depression” where I don’t want to talk to anyone and I don’t feel like doing much. The nurses want me to get up, shower, go for walks, etc. I am more apt to do that in the beginning of my stay, but at the end, it’s the last thing I want to do. This last hospital stay was even worst; I was so antsy to leave I couldn’t think about anything else. I even thought about signing myself out of the hospital against medical advice around day 9. I think that was the hospital depression talking.

I slept what felt like 12-16 hours a day, even though the sleep wasn’t the greatest because of getting woken up constantly for vitals, blood work, medications, doctor visits, etc. The most sleep I got in a row was no more than 3-4 hours. And that’s being generous. Sleeping during the breaks of time where no one bothers me is the only way to get through the day, because otherwise I’ll be absolutely exhausted the next day, getting worse each day I’m still stuck in the damn hospital bed. So sleep is key. Sometimes it’s tough if there is a day with lots of visitors or perfectly spaced out doctors visits, but especially with the fevers I had been having and the chills, I was extra exhausted at all times.

Otherwise, I was pretty sick this time in the hospital. Rather than the normal on/off fevers I had experienced in my last hospital stays, this time the fever was almost constant. Without the occasional Tylenol, I would have bad chills and really feel out of it. That, along with the pain in my muscles and my abdomen which brought on occasional pain med, made me feel really exhausted all the time. And the longer I was there, the worst it got. In the beginning of the stay, my sleeping habits were almost normal, where I would wake up in the morning, have three meals a day, and go to bed at a normal time. The longer I was there, the more messed up my sleep schedule got. Halfway through, I switched to only eating two meals a day, usually lunch and dinner, because I would sleep in until 10-11, order lunch, sleep until lunch got there, eat, get my daily visit by a bunch of doctors, sleep more, watch some TV, order dinner late, watch late night TV, and then fall asleep to just be woken up a million times during the night for blood draws, transfusions, medications, etc.

Besides sleeping, my daily activities consisted of lots of daytime television, games on my phone, and occasional reading. Luckily, the television in my hospital room had a blu-ray player with the ability to connect to Amazon prime video, so I was able to watch some movies when there was nothing on TV. It was a nice addition to the movies my parents brought from home, which were from their extensive Disney movie selection that were bought for my niece and nephews. Daytime television was often not what I wanted to watch, but I chose to stay organized by using the TV Guide app to find what I would want to watch throughout the day. Then I could plan what time the shows I wanted to watch were on so I could keep a sort of schedule during the day.

But, the hope is that this next cycle I won’t have to worry about any of this stuff, because the new plan will hopefully keep me out of the hospital for the rest of my treatment!