Today was a much better day. Although I didn’t get a lot of sleep, I felt much more rested and a lot less cranky. I was able to spend more time up and out. I got in a few more walks, which I hadn’t been doing much during this stay. It was also the first day of the NCAA basketball tournament, so I was also to watch a few games. I also had my wife and parents visit, and that helped a lot. Hopefully I can get some sleep tonight.
I might be feeling the mucositis coming on. I started having some irritation on the side of my tongue. Today I felt some tingling in the throat and the BMT noticed some redness in the back of my throat. I’m also noticing some irritation on the other side of my tongue. We’ll see how this goes.
The last couple of days have been “interesting”. I was never quite able to get to sleep before my transplant, and just attributed the insomnia to excitement/anticipation. Well, Day 0 ended and I was still unable to go to sleep. During the day, I also started having issues with diarrhea, so I was pretty miserable. I also had a few moments when I felt down just thinking about the long road ahead. Night came, and I was STILL unable to sleep. I had a difficult time falling asleep, then as soon as I would feel like I had fallen asleep I would wake up and restart the cycle. During the times when I did fall asleep, I remembered having the strange, psychedelic-type dreams again. When I talked to the BMT team in the morning, they indicated that this might be a side effect of Prograf, an IV drug that I’m receiving for anti-rejection. We’ll continue to monitor.
By the night of Day 1, I was extremely sleep-deprived and cranky. There were so many little annoyances that were impacting my ability to sleep that gave a rant to every nurse that came in. There is a forced-air blowing sound that I don’t remember hearing in my other rooms. There was also the wall-mounted call monitor that would not dim (it was like a flashlight shining in my eyes). I nurse figured out that there was a device in the blood pressure machine that is left in my room which made the monitor think a nurse was still in the room. She disabled the battery and the light finally when out. I spent from about 10 pm until around 12:30 am trying to fall asleep. I then when into a sleep/wake cycle until around 4, during which I was have the very vivid dreams. I eventually got a little restful sleep after that. Still not good sleep, but I felt a little better when I woke up.
Today was the day we’ve been working toward for the last 3 months. The BMT team wasn’t able to provide a time in the morning, so I tried to keep Lisa and my mom informed. Around 9 am, they told me it might be 11 am, or it might be later in the afternoon. Around 10 am, told me they would start pre-meds at 10:30 am. When the doctor’s arrived, they were very efficient, with the BONE MARROW Igloo cooler and IV lines in hand. They set up very quickly and Lisa arrived just as they were getting set up. They started the stem cells around 10:45 am, and everything was done by 11:00 am. Very anticlimactic… And now we wait.
I checked in on Tuesday, March 8th for my transplant. My first stop was Intervention Radiology to have a trifusion catheter installed in my chest. This one has three ports and will replace the PICC line in my arm. I was slightly sedated during the procedure, and when they were finished I had a cut near my collarbone (which was used to insert the catheter), then the tubing and bandage on my chest. The area was sensitive and the cut area was painful for about a week. Once the catheter was in place I was transferred to my new home in P2.
I was started on various premeds, then I was hooked up to numerous IVs by the afternoon. I was started on a chemotherapy regimen called BuCy2. I received four days of Busulfan, then two days of Cyclophosphamide (Cytoxan). These were a lot stronger than my last rounds of chemotherapy. I was immediately a lot more tired, and quickly had issues with my appetite and nausea. This started around the second day and last through the 6-day regimen. Once I was off that cocktail, I started feeling gradually better. I wasn’t able able to do much walking during the bad days and spent most of the day curled up in the bed. But as I started feeling better, I was able to eat more and didn’t need to keep a bucket close by.
I noticed that the taste of food is changing, but it’s different this time than last. I seems like this time that something is coating the inside of my mouth, almost like a greasy film. As a result, the grease in the food that I eat is magnified. For example, a piece of grilled butter toast tastes like it is soaked in butter. Soups have small bits of grease in the broth, but I can taste each one. Everything tastes like grease/gravy/butter. It’s better than the alka seltzer taste, but still not very appetizing.
The day before my transplant, I was feeling better and my mind was racing, so of course I couldn’t fall asleep. The staff also had to do vital checks, plus a blood transfusion (due to low hemoglobin) that ended up being delayed until around 3 am. I’m getting a lot of antibiotics, anti-rejection medications and other supplements – Magnesium/Phospherous (which the nurse call Meghan Fox)
Ava is on her way to the Southfield Daddy-Daughter Dance. Thanks to my dad Phillip Williams Sr. for being her escort in my absence.
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.