Today, Cathy, my Nurse Practitioner, came into my room and said what I have been waiting to hear – “How would you feel about going home today?” While my neutrophil counts were still low, the doctors still seemed to be baffled about the cause. I could either continue to feel great and wait it out in the hospital, or I could feel great and go home. Over the course of the morning and afternoon I received my prescriptions and discharge papers. I learned how to give myself Neupogen injections, and I packed up a month’s worth of stuff. Lisa picked me up, then I was HOME!
It felt a little strange to be out of the confines of the hospital. No more urinating in bottles used to monitor my input and output. No more nurses bugging me to take my blood pressure and temperature at all hours of the night. But most important, I was able to see and hug my children, something I hadn’t done since before Christmas. Lisa has the kids FaceTime me just as they were about to arrive home. They were surprised to see our bookcase in the background as they came to realize that I was home. It was great to see them.
So what did I do when I got home? Well, our home internet had gone down a couple of days prior. I had been trying to troubleshoot virtually with Lisa and determined that our modem died. When I got home, I replaced the modem with a new one Lisa picked up, and configured the network and wi-fi. I’m back!
Later in the evening, my parent stopped by with some pizza. One of the things to remember about an extended hospital stay is that you are bombarded with pizza commercials, without the ability to procure said pizza. I had an itch, so the first thing I wanted upon release was some pizza. We even ended up eating pizza on our fine wedding china. Lisa and I had lamented months ago that we received a full set of china as wedding gifts, but in the almost 15 years since we’ve been married we’ve never used it. It always about fear of breaking, the fact that everything has to washed by hand and other inconveniences. So when I got home, we used our china for the first time.
Given the fact that my counts still weren’t going up, the doctors made the decision to start giving me Neupogen injections. This drug is designed to stimulate the growth of white blood cells. The belief is that my slow neutrophil recover is most likely due to the antibiotics given, so hopefully this will get things moving. I’m expected to get shots over the next 6 days.
Since being off the antibiotics, I’ve noticed that appetite is slowly coming back and the nausea is gone. Food is starting to taste normal, which has helped to confirm that the hospital food really isn’t that good. My energy level is still high.
I also made the decision to shave my head. After DeMarco cut my hair, it never started growing back. I could rub a washcloth over my head and see that the hair was still falling out. So I used a new razor and shaving cream and went bald. Now I look a lot like Half-Pint from School Daze. Given the chemo and the current state of my receding hairline, I might stick with this look for a while.
I’ve been off antibiotics for 24 hours now, untethered from the IV pole. I’m enjoying the freedom of being able to walk around and flip around in the bed without being attached to my “dance partner”. I’ve been eating better – yesterday’s lunch went down better than breakfast, I ate some vegetable beef soup as an in-between, and Mom brought me a Marie Callender pot pie for dinner. Yesterday’s bloodwork showed that my Neutrophil count was still at zero, which is frustrating. Hopefully it will show a pop today.
I’ve been having issues with eating and appetite over the past few days. I’ve been on a number of different antibiotics and antifungals since the fever spikes in December. I started looking into the side effects of these antibiotics – Maxipime, Vyncomyacin, Flagyl, and Metronidazole – and was finding that they might be the cause of my loose stools, loss of appetite and swallowing issues. I also read that antibiotics can lower white blood cell counts, which could explain why my neutrophil counts are taking so long to recover. I pressed the doctors over the last few days about why I was still on these antibiotics, and whether they might be the cause of my most recent issues and my blood counts. It looks like today I’ll finally be coming off the antibiotics. We’ll see how it goes.
I guess my hair is dormant. I got my haircut about a week ago and it still looks the same. I also shaved last about a week ago. Most of the hair that was there is still there, but it doesn’t seem to be growing.
Still waiting for my blood counts to go back up. The last few nights I’ve gotten better sleep with less frequent trips to the bathroom, but my appetite hasn’t been quite right. No nausea, but food isn’t going down easily. My energy level has still been a little lower.
Today I felt tired for most of the day. I seemed to have gotten a good night’s sleep the night before – I went to bed around 10 pm and woke up around 6 am (with a few nightly interruptions of course for pills and what not). I still felt tired, and even got nauseous at breakfast. I slept for most of the afternoon and felt better when I woke up around 5 pm.
Today my hair started to fall out. I first noticed when hair started falling in my face, and I noticed small hairs on my pillow. I found that I was also able to pinch out small clumps of hair. I had felt a tingling in my scalp and a dryness to my hair since the chemotherapy. My barber DeMarco Moore was able to come out to give me a cut, so I shouldn’t have to go through watching it all fall out. I held out for a while, but I guess it’s time L
I was able to get untethered from my IV pole for about 3 hours yesterday. Having a line attached restricts how I can move and sleep. It also restricts me from wearing real clothes, since the gown allows for easier access to my PICC line. Being untethered provided a strange freedom. I had been continually connected to IVs since December 18th. I took advantage by going for a pole-free walk and taking a nap on my stomach. I’m not sure how long until I can be untethered again, but I think it’s coming soon, since they are ending my antibiotics today (I think).
Because I wasn’t eating much, I had been drinking Ensure. The funny thing about Ensure was that it was the only thing that tasted GOOD. Chocolate Ensure tasted just like chocolate milk. Sprite tasted like Alka Seltzer. It’s Bizarro World. So for those of you that hate the taste of Ensure, know that it was chemically designed to help folks like me I guess. The problem was that Ensure counted against my liquid restriction, so by the end of the the day I was limited to eating ice chips and popsicles. Luckily my sodium counts went back to normal after cutting down on the water, so the restriction was lifted.
The temperature spikes ended around December 30th. It started to become easier to swallow and my appetite started coming back. Taking pills is easy again. Food is starting to taste a little more normal but still has a long way to go.
FaceTime has been a godsend during my time here. I have been able to talk with my family every day, and it allows my kids to see me without having to go to the depressing hospital. The highlight for me was being able to see Ava’s dance recital via FaceTime. I was also able to virtually attend the “30 Americans” special exhibit at the DIA.
FACEBOOK – Thanks again for your continued prayers and support. Just want to let everyone know that my 7 days of chemotherapy ended a few days ago. I made it through without losing my hair. My energy level is higher than when I checked in. I could not have asked for a better treatment experience. I’d also like to thank my Spartan friends for making a sacrifice and giving me a very therapeutic watching experience yesterday. I couldn’t have asked for more. About to watch the Wolverines now. Represent Michigan. Happy New Year! )w/ Tousil blanket)