Sunday, May 26, 2019
A Little Smoother
Dr. Gabriel really came through for me this round. She cut back on the steroids, and demanded Neulasta because of my reaction last time to the generic. No jitters, no aches, a bit more sleep, and peace of mind. Thank you!
Thursday, May 23, 2019
Peach Fuzz
The hair loss has pretty much stopped now, not that there's much left. I am wondering if it will continue through the next round, which is Friday.
Monday, May 20, 2019
Thursday, May 16, 2019
First Chemo Update
It was a lousy week after that last post.
I was rammy and restless with all the steroids that had been pumped into me for the chemo set-up, and on top of that the nausea medication conflicted with my restless-legs medication and gave me uncontrollable twitches and jerks.
But the real pain set in when I returned for my Neulasta replacement medication. Neulasta is typically assigned to stimulate the production of white blood cells. They apply a patch, and it dispenses over the next couple days. Insurance refused to cover Neulasta and recommended a different regimen that required waiting for two days, and then a shot in the arm. I reminded the nurse that I was to also have a script for oxycodone, but she said I wouldn't need it. Maybe a Tylenol, or try Claritin. I repeated that Dr. Gabriel was pretty clear I was to have the Oxycodone. Nope. Later that afternoon / evening, I felt like little squibs were being blasted out of my marrow bones. Mostly my legs, hips, and feet, but also my arms. I was wailing like a cat on a rack. Actually, it felt like a rack might feel. Jack was able to call the Penn Med center and Gabriel was on call, so I got my happy pills and was able to sleep the next few days.
On Wednesday, I had the family over to help me shave my head in prep for losing it, which should be this weekend or Monday. The girls separated my hair into quadrants and braided it, then cut the braids off. Then Buddy took the trimmers and shaved me down to about a half-inch fuzz. We taped it; people watched; it was fun.
But in the meantime, my body temp kept rising past the Rubicon, 100.4, and then drop down again after a half hour. I'm supposed to report to the ER if my temp goes up that high, but I didn't feel anything wrong. I checked with Dr. Gabriel, and she said to keep a close eye. But on Thursday, it went flying up to 102.8. I figured I should go to the ER. I knew I wasn't getting enough fluids the past few days, so I was probably dehydrated.
Turns out the Virtua ER has no idea what to do with a chemo patient with a fever.
So I was stuck in the hospital for two days while they figured out there was nothing wrong and that this was my reaction to chemo. Very frustrating.
But in the meantime, the CPAP the hospital gave me to use blew a hole in my upper sinuses, and I came home with a good sinus + cough + chest congestion that still has me down on a Thursday.
I have felt pretty good all week, and I got my third expander fill of 60cc's.
So now THAT was my first full week of chemo!
I was rammy and restless with all the steroids that had been pumped into me for the chemo set-up, and on top of that the nausea medication conflicted with my restless-legs medication and gave me uncontrollable twitches and jerks.
But the real pain set in when I returned for my Neulasta replacement medication. Neulasta is typically assigned to stimulate the production of white blood cells. They apply a patch, and it dispenses over the next couple days. Insurance refused to cover Neulasta and recommended a different regimen that required waiting for two days, and then a shot in the arm. I reminded the nurse that I was to also have a script for oxycodone, but she said I wouldn't need it. Maybe a Tylenol, or try Claritin. I repeated that Dr. Gabriel was pretty clear I was to have the Oxycodone. Nope. Later that afternoon / evening, I felt like little squibs were being blasted out of my marrow bones. Mostly my legs, hips, and feet, but also my arms. I was wailing like a cat on a rack. Actually, it felt like a rack might feel. Jack was able to call the Penn Med center and Gabriel was on call, so I got my happy pills and was able to sleep the next few days.
On Wednesday, I had the family over to help me shave my head in prep for losing it, which should be this weekend or Monday. The girls separated my hair into quadrants and braided it, then cut the braids off. Then Buddy took the trimmers and shaved me down to about a half-inch fuzz. We taped it; people watched; it was fun.
But in the meantime, my body temp kept rising past the Rubicon, 100.4, and then drop down again after a half hour. I'm supposed to report to the ER if my temp goes up that high, but I didn't feel anything wrong. I checked with Dr. Gabriel, and she said to keep a close eye. But on Thursday, it went flying up to 102.8. I figured I should go to the ER. I knew I wasn't getting enough fluids the past few days, so I was probably dehydrated.
Turns out the Virtua ER has no idea what to do with a chemo patient with a fever.
So I was stuck in the hospital for two days while they figured out there was nothing wrong and that this was my reaction to chemo. Very frustrating.
But in the meantime, the CPAP the hospital gave me to use blew a hole in my upper sinuses, and I came home with a good sinus + cough + chest congestion that still has me down on a Thursday.
I have felt pretty good all week, and I got my third expander fill of 60cc's.
So now THAT was my first full week of chemo!
Saturday, May 4, 2019
First Chemo
I had my first chemo Friday, 5/3. I got to the blood lab at 9:45. My appointment with Dr. Gabriel was at 10:15. We finally saw her at 12:15, so I didn't get to the chemo chair until almost 12:30. Then there was a series of pre-treatments before the two chemo drugs. All told, we didn't get done until after 4. Then I napped!
All told, it just felt like I was being pumped full. My BP was 177/81, which is nuts.
Jack had bought comfy front-row-center balcony seats to see Delta Rae at the World Cafe for Friday night. When I was told Wednesday to start chemo Friday, Jack put the tix up on eBay, but everyone I talked to said to go for it. So through some machinations with Lindsay, we bought the tix back and went.
It was funny because I was chatting with Delta Rae's Brittany, who sympathized with my plight, but was very glad to hear I would be there. She called be a rockstar and Jack a badass. I was dragging, but feeling good. I drank over a half-gallon of water through the course of the night. And Brittany gave me a shout-out from the stage.
I was exhausted when we got home at midnight, but I slept well after the restless legs settled down. I woke up pretty energized around 7:30, but by 9:30 I was down for a short nap. That seems to be the pattern today ... walk about for 2 hours, sleep for a half hour.
All told, I think it was successful. So many prayers coming in. I am blessed.
All told, it just felt like I was being pumped full. My BP was 177/81, which is nuts.
Jack had bought comfy front-row-center balcony seats to see Delta Rae at the World Cafe for Friday night. When I was told Wednesday to start chemo Friday, Jack put the tix up on eBay, but everyone I talked to said to go for it. So through some machinations with Lindsay, we bought the tix back and went.
It was funny because I was chatting with Delta Rae's Brittany, who sympathized with my plight, but was very glad to hear I would be there. She called be a rockstar and Jack a badass. I was dragging, but feeling good. I drank over a half-gallon of water through the course of the night. And Brittany gave me a shout-out from the stage.
I was exhausted when we got home at midnight, but I slept well after the restless legs settled down. I woke up pretty energized around 7:30, but by 9:30 I was down for a short nap. That seems to be the pattern today ... walk about for 2 hours, sleep for a half hour.
All told, I think it was successful. So many prayers coming in. I am blessed.
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