Here is an update of my week in Salt Lake City with my first set of Chemo.
On Tuesday April 5th I moved into Dasch and Megan's downstairs apartment. The place is great for me with a big bathroom, kitchen and a dark bedroom.
I started the ICE treatment on the Wednesday at 2 pm. The chemo is Etoposide. I take this for all three chemo days. It only takes about 40 minutes to administer with the port. I get this at the same sweet doctor's offices that I did the first set of chemo. Nice lazy boys, dvd players and a library of magazines.
I felt great after this first day. No really issues. The port makes the process very fast and I don't really feel anything.
Thursday Day 2 Chemo was a bit more hectic. I had the Etoposide and then I had a new drug called Carboplatin along with some steroids and a lot of nausea medication. I ended up sitting next to a lady that could not have been older than 50. She was getting chemo for ovarian cancer that may help her live a year longer. She was very positive and up beat about everything. It was probably the sadness story I had ever heard and she told it like she was telling a funny story to a kid. She really gave me strength and made me very sad.
I then headed over to the hospital to get my "chemo back pack." There was a mix up on time and I had to wait 2 hours for the stuff to arrive. In the backpack is the nasty chemo called Ifosfamide. It was on a 24 hour pump shooting a little into my body at a time. This stuff came with its own spill kit.
The backpack was a pain in the ass. I knocked over a chair, dragged it across the room and generally abused it. I just keep forgetting that I was attached to something. Overall you probably can tell I really did not like the backpack thing.
Overall the evening was fine with little effect from the chemo. Maybe a bit more tired but no sickness.
Friday Day 3 Chemo was just the Etoposide and getting the backpack removed. The nurses decided to add some fluids and more medication because I was a little dehydrated.
For the second day in a row I had an interesting and heartbreaking conversation. I shared the room this time with a 17 year old autistic getting treatment for Hodgkin's also. He is a senior in high school and will miss his graduation. He was only a little bummed about that, but was really excited to tell me about his gold medal in the Special Olympics with his basketball team.
After that treatment I went over to get my backpack off. They also changed my dress for my port. After all this I was feeling a little bit...loopy. Not all there. Luckily I did have a driver because I was in no condition to be behind the wheel.
By the time I got home I was not right. Head was spinning and a bit out of it. I went to bed early around 7.
This evening was one of the worst I can ever remember. It was a combination of floating and not knowing where I was and the world spinning. It reminded me of a concussion I once got and combining that with being almost blackout drunk. I ended up waking up ever hour to stumble to the bathroom. I'd sit on the toilet and try and figure out where I was. The whole time my body would feel like it was floating and I only had slight control of it. I would have to figure out where I was and then go back to sleep. I could go on for a while with this but let's just say it was a bad night.
The next morning Trina came over and I was basically talking in tongues. Which scared the hell out of her. She made me eat some and drink some which made me feel better.
I came more around as the day went on and was semi good when Brian Merrill, who is the CEO of Western River Expedition, came to check on me. He probably could have gotten any company secret out of me at the time instead he brought me dinner. The river community is really a nice tight knit group.
On Sunday I was better but not great. I was trying to keep drinking liquids but they just tasted terrible. From Friday evening to Monday morning I ate 1 banana, 2 granola bars and probably 40 crackers. And drank 2 gallons of water. Sunday evening I was pretty freaked out that I was never going to be able to eat again. I thought I was over the hump and tried some yogurt....this turned out like that tequila shot at 1 am. Coming right back up.
On Sunday I also started my Neupogen shots which I will have to take for 8 days straight. These are to boost my white blood cell count. My temperature also rose to 100.6 which is just a bit over the worry level. Trina ended up calling the doctor. Dr. Prystas thought it was in normal ranges for having so much chemo in me.
Monday was much better. Dasch cooked me bacon and I knew I was going to eat again.
I ended up going to the doctor office on Monday for what was supposed to be just a blood check. The nurses decided to give me 2 big saline bags and some medication for combating my dehydration. This had more to do with my lack of eating than my lack of drinking water. I walked out of the doctors office a new man. I felt great. I talked Dave my driver into heading down to Albertos and ate a giant burrito.
Since then I have felt better every day. I was able to go to an MLS soccer game where I was honored as "Heroes Among Us" for Sheri Griffith Expeditions work in the Moab Community. I also was able to attend a minor league baseball game.
I did have one minor/major setback on Friday the 15th. I was eating lunch at the Himalayan Kitchen (which is selling Arlo wristbands) in downtown Salt Lake with friends when I broke out into uncontrollable shivers. I could not stay warm. My friends took me home and checked my temperature. It had spike to 101.5. They call the doctor who ordered a prescription for antibiotics. Before going to get the antibiotics they checked my temperature again and it was at 102.3, way to high. They went to pharamacy with the plan if I was still high when they got back we would go to the emergency room. It took them 20 minutes to get back and I was already feeling better. My temp had dropped to 100.9. They continued to monitor me throughout the evening and my condition improved. The whole event took a little less than two hours. It was really a scary experience that I have never had before. I could be feeling perfectly fine one minute and just drop of the map the next.
Other than the first weekend I'm feeling really good. I have not lost my hair yet and my energy is still ok, though my weight is down about 20 lbs. I go in tomorrow for the next round of chemo. And then I will get lots of test done. The bone marrow transplant should start 3 weeks after Friday.