Alternate title: How I became the grumpiest I've ever been
Alternate alternate title: I'm in the hospital but I'm totally fine
On Friday I received the news that I was neutropenic and needed to stay away from all potential sources of infection. I had all sorts of seemingly crazy instructions, such as to throw out fresh flowers and to wash bananas before peeling them. It was no problem to enact these instructions, and I was ready to hunker down at home and grow some neutrophils.
I was still pretty weak, tired, and nauseous on Friday, so my mother-in-law (MIL) decided to have the girls over for a sleepover. They love sleepovers at grandma’s house and were thrilled by this development. Ian got to have the night off, and I went to bed early as usual.
In the morning, our weekend was diverted to the path that I am still on. At 8 am we received a text from the MIL that Eleanor had been up puking all night long. My kids have been disease-free for weeks, and of course it is my neutropenic weekend that they decide to be infested. The question was, then, do the kids stay at grandma’s or come home?
In hindsight there is only one answer to this question (a vehement “stay at grandma’s”), but at the time we weren’t sure what to do. Regarding Eleanor, we felt that the poor little dear would have been more comfortable in her own bed, and we felt we would have been putting out the MIL for her to keep dealing with the pukey situation. Regarding myself, I called the oncology clinic twice and spoke with two different nurses, both of whom said it would be fine to bring Eleanor home as long as I didn’t touch her or any of her dishes (saliva-contaminated items).
Both girls came home. I donned a mask and relinquished my recliner. I set up a sufficiently comfortable new post for myself in our desk chair at the dining room table. I also moved my sleeping quarters to the guest room. I stayed away from Eleanor; Ian would have to deal with the sick child by himself.
On Saturday night Azalea started her own puke festival. Ian was up all night helping her. It was difficult to quench my mom instincts and not help any of my ailing family members. The door to the guest room remained tightly sealed.
Ian woke up feeling ill, so on Sunday morning I called for back-up. For an hour or two, I was the only nurse available for my family. I wore my mask, some latex gloves, and stayed out of the living room. I delivered all beverages in clean dishes, and bussed dirty dishes on a clean platter (i.e. I did not touch dirty dishes). Before long Aunt J came to our rescue and did EVERYTHING: washed pukey laundry, decontaminated doorknobs, delivered sips of juice, and read books to sleepy kids. It was a sunny day so I spent most of it on our porch, confident that I was avoiding the infestation. She stayed well into the evening, and planned to return early the next morning.
On Monday morning she accompanied me to my appointments. I had a heart echo to check on how my heart is holding up to chemotherapy (result: my heart is holding up perfectly!) and an oncology appointment to check on my white blood cells. My counts had not increased one bit over the weekend, and I complained about continuing to feel nauseous and crappy. I steeled myself for another few days stuck at home. Aunt J continued her labors taking care of my family and household.
Disaster struck on Monday night. I puked. Although I was still feeling chemo-nauseous, I have a strong constitution and was therefore suspicious that this was the beginning of neutropenic-Heather-gets-the-stomach-virus. Oooo did this make me grumpy! We took my temperature. It was 99.8. My instructions have always been to go to the ER if it gets above 100.5. We called the nurse. She said I was still fine at home, but to call back if my fever got worse. I eagerly crawled into bed before we could take further temperature readings.
On Tuesday morning my fever was still under 100.5, and I had not puked further. I was weaker than weak, more nauseous than nauseous, and the stomach virus had found its way to the other end of my digestive system. Grumpy! I managed to keep down the fluids, and I largely slept through the discomfort.
After my afternoon nap, my family was getting concerned. I still had a fever (albeit under 100.5) and they were concerned about my hydration levels. I once again called the nurse. She asked me how I thought I was doing. I told her that I thought I was on top of the situation, but my family had urged me to call and make sure she agreed. She said she’d relay my goings-on to Dr. Oncologist and call me back.
I had barely set the phone down when it was already ringing with her call. Dr. O said to go to the ER and get myself admitted.
It took almost four hours to get from the ER to a room in oncology. By now it was 9pm, which is my chemo-recovery bedtime. I was so tired on top of all of this other junk, but I had another two hours of questions and blood pressures before I was left alone to rest. Plus, they wouldn’t let me take my usual pills (which I had brought from home), so I had to recite my meds, make sure they got it right, and wait wait wait for it all to be delivered from the pharmacy department. Grumpy!
I maybe got one hour of sleep that night. If you’ve ever stayed in a hospital you know that they wake you up every couple of hours to make sure you’re alive. It’s the strangest thing given that sleep is the best medicine. Plus, my neighbor’s thingy beeped for literally 2 hours before anyone turned it off. I was later told that there was a temporary malfunction in our nurse-calling buttons, and that is why no one came to turn it off. Grumpy!
Dr. O came to my bedside on Wednesday morning. My counts were still low, my fever was still low, I was still taking prophylactic antibiotics (IV rather than pill, since I’m here), and I was not clinically dehydrated. She ordered a test to make sure that I didn’t have a Clostridium difficile infection. If this test came out negative I would be able to take some anti-diarrheal medicines and start to feel better. The results were to be in at 11 am.
11 am came and went. No one came to give me results. I’m a patient patient, but by 1 pm I thought it was time to page a nurse and request the results. Turns out I had been passed off to a different nurse. The new nurse came in, and when I asked her about my C. dif result she casually said, “Oh, I think it came back positive.”
I think I said, “WHAT?!?!”, but what I might have said was, “What the f---?” or “How long have you known this?” or “Why did no one come tell me sooner?”
Then she logged into the computer and saw that my C. dif result was in fact negative.
GRUMPY!!! This feeling masked what should have been a huge huzzah for the good result.
Ooo was I crabby. This place was throwing my off my game! They were messing with my schedule, my sleep, and my mind. I wanted to go home where I am professional nausea-and-diarrhea recover-er.
I almost forgot about the final grumpy factor. I have very weak 4G and wireless signal from my hospital bed. I’m dropping calls, failing texts, and Facebook and blogging are out of the question (I’m typing this in a word processor and am going to have Ian upload it from home if I can’t get a moment of signal here). Fortunately I need sleep, not entertainment, so I’m not terribly bored or anything.
Then my MIL brought the girls in to visit me. That helped me to feel better. My room is on the top floor of a brand-new wing, and there is a rooftop garden on this level. We played on the playground in the sunshine. I assured them that I’m getting better and I’ll be home soon.
I made it through another night here last night, this time with slightly more sleep. I saw Dr. O in the morning, and I’m doing great on all fronts except for one: my neutrophils. My total white blood cells have increased, and by that alone I am no longer defined as neutropenic. However, my absolute neutrophil counts are still a bit low (in the 400’s). Dr. O wants them to be above 1000 before she sends me home, probably because of the recent stomach virus infestation. What I’m trying to say is that I don’t think that these values would have landed me in the hospital (indeed a nurse just expressed her surprise that I’m still here), but since I’m already here this is the threshold I must cross to be released. I have no idea how long it will take me generate these neutrophils; there is no medicine for it. (Well, there is (neulasta), but I’ve already received my dose—the neutrophils I have are probably due to its action!) In a somewhat panicky voice I asked her if I will still be here next week, and she confidently said no no no.
So…I need a goal…something to target…how about Saturday? Let’s shoot for 1000 neutrophils by Saturday. Clearly my preference is for tomorrow, but in the absence of any knowledge on the subject it seems like a herculean task to double my neutrophils in 24 hours. Saturday it is!
For those of you supporters out there who like to have details for prayers, meditations, or whatever, my neutrophils are counted from blood taken between 3:30 and 4:30 every morning. (I told you there is no sleeping around here.) Again, they need to be over 1000.
I’m in high spirits, guys, I really am. We made some bad choices, I had a bad day, and now I’m fine again. We’ve got a new family protocol to prevent this from happening again (people who are sick elsewhere do not enter the home, even if they are my offspring; or I retreat to my MIL’s house if people start their sickness in my home—note that we discarded this idea last time because in our mind her house was also contaminated). I’m trying to translate my personal recovery patterns and habits to the hospital setting, and I’m starting to figure it out. I’ve still got this. I’ll be home before we know it.