March 2016


DAY 16. Today was the first day of home nursing care. Part of my treatment involves getting magnesium infusions. The Prograf that I take as anti-rejection medicine causes me to have a magnesium deficiency. I need to have a 2-hour magnesium infusion every day, so the nurse came by today to train Lisa and I on how to use the IV pump, and how to flush and maintain my trifusion catheter. The process is relatively straight-forward. They plan to have a nurse come out on Saturday and Sunday for additional training. After that we should be able to maintain the pump on our own.

Today I was discharged! In the morning I met with doctors, then I met with the Pharmacy technician. I was given a pillbox with 7 different prescriptions, 5 required and 2 as-needed. I realized when I took a selfie that my face had darkened a few shades, as if I spent the last 3 weeks at the beach. I feel good today. There are a couple of treatment-related issues that I’m dealing with. My taste is starting to return, unfortunately it is the metal taste that so many people describe. It is almost like everything is soaked in old coffee, so when I eat food I get the texture of the food but the slight coffee taste. The other issue that I have is with some skin sensitivity, especially in my hands. The palms of my hands have darkened, and are very rough and very sensitive to touch and heat. In an unfortunate turn, I also have sensitivity in my scrotum, which has me walking like a cowboy sometimes. All of these issues are relatively minor, but hopefully they clear up soon.

Good news. My counts are going up and I should only be here for 2-3 more days. I was taken off the Prograf IV and the antibiotic IVs. The TPN IV comes off tonite. I will also be transitioning to pills later. I’ve been feeling good today. I’ve gotten a couple of walks in already. No improvement on the food front with regards to taste or appetite. That will need to wait until I get home I guess.

Happy Easter! Another major holiday spent in the hospital, to go along with Christmas, New Years Day and MLK Day. When I took my shower this morning I was able to rub off most of my hair with a washcloth. I still have my eyebrows. My throat is getting better. Still not eating a lot but it’s staying down. Food seems to taste like absolutely nothing, even my favorite fallback peaches. My mouth is still raw in spots and rough in other spots. The roof of my mouth is also still very rough. This causes different parts of my mouth to respond to heat and cold differently. I had a strange moment eating peaches when a spoonful would feel cold in part of my mouth and room temperature in other parts, all at the same time. Lisa brought me a plate with some ham, green beans, mac & cheese and a crescent roll. I took a few bites, but my taste buds didn’t cooperate.

The throat pain finally began to subside. I noticed in the middle of the night that I could swallow without the sharp pain. The pain changed more to irritation and more of felling of something being stuck in my throat. I was able to drink small amounts of water and eat soft foods, but this would aggravate the pain somewhat, and at times the food would want to come back up. As the day went on, swallowing became easier and more comfortable. On a side note – I noticed that the hair on my head is starting to fall out.

The issues with my throat escalated quickly. With each swallow it felt like razer blades were cutting across my throat. Each time I attempted to swallow a pill or drink water it would immediately cause me to regurgitate. Medications were moved from pill to IV, and I was also put on a supplement called TPN. I was wiped out from an energy perspective and spent 3 straight days in the bed. I also started noticing a lot of skin changes. The back of my left hand is dark and scaly again. Also, the palms of my hand are very dry and rough, but extremely temperature sensitive. My face is a lot darker. My legs are spotty – all of the hair follicles are darker.

The mucositis has been picking up. I started getting some tenderness near the back-bottom of my mouth. My tongue and throat has become more tender. I then started feeling some roughness on the bottom side of my cheeks. I also started feeling irritation all the way down through my stomach. My tongue is becoming more rough and coated. There doesn’t see to be too much happening on the roof of my mouth, but definitely on my tongue, throat and cheeks.

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)