1st day of targeted chemo
About a week ago, I sort of panicked and contacted the oncologist in charge of my local care. Everything was swollen, my lymph nodes felt bigger everywhere, my hands, ankles, wrists hurt and my nails have shooting pains under them. I went to bed one night in abdominal pain - more like horrible cramps (which I am way past experiencing). The left side of my jaw hurt to chew and I couldn’t open it normally; the one oncologist said it was probably a swollen lymph node causing it. The hardest was trying to eat or sleep with my adenoids and tonsils so swollen then were touching.
She responded immediately by sending in a prescription for prednisone and we scheduled to start the Belinostat, the targeted chemo drug, for today -Monday, 4/13/20. I have felt amazing on the prednisone and had it in my head that Belinostat was no big deal. I know it's much less toxic than CHOEP. I was actually kind of excited to get started. I need some structure. I want to consistently feel better as it promises. I want to start thinking about what it looks like to live my full life again.
I love the people and location of where I get the IVs. Its inside a newer hospital. It is adjacent to a large children's hospital. I find myself praying for the little ones while I walk in and out - and I deeply thank God over and over again for my healthy children and grandchildren.
But today wasn't as easy peasy as I expected. They gave me 3 drugs to prevent nausea which took a long time. I generally don't feel good when I get these IVs in my port. I don't know if its the heparin they flush it with to make sure there are no clots or what. When I get high dose Vitamin C or Mistletoe, I try to sleep as much as I can and then go eat afterward to feel better.
They finally started the Belinostat. We were supposed to be there 2 hours total and we'd already been there about 2 hours by this time. Andy was able to come this first time but can't anymore - because of the pandemic. He had forgotten his glasses and was getting sleepy so he went to the truck. I found myself getting gradually more sick; I wondered if it was in my head. Finally I called the nurse over who looked at my pale face and knew I wasn't OK right away. I thought I was going to vomit with horrible nausea low in my abdomen. She took my BP which was something like 78/49. She knew I was having some kind of reaction and called other nurses over. They turned off the drug, started fluids, made sure I had a barf bag. I thought I was going to have a diarrhea attack but she said I couldn't get up right then or I'd pass out. I felt a sense of panic but worked to calm myself down. She offered Ativan for the nausea, which would make me woosy. I didn't take it.
We waited it out and I fell asleep. She said later that most people can't sleep with the amount of steroid drugs I'm on. I couldn't believe the time when I woke up and we'd been there 4 hours. They conferred with the pharmacist and doctors and restarted the Belinostat. They conferred with the literature. She said this happened in the studies but I shouldn't feel bad during my 16 days off. That made me worried I would feel like this every day I get the IVs. I still felt some nausea but I wanted to get it done and go home, which we did.
A 2 hour day turned into a 5 hour day at the hospital. 4 more to go this week, then a 16 day break.
My allusions of how easy this was going to be feel a bit shattered. I know it could all be much worse. I have a good appetite (prednisone is probably helping that). Right now I just want lots of fruit.
My body is probably in total shock. I don't take Tylenol, for example - nothing! We buy something like that and it always expires in our house. Today my body has more chemicals in it than it probably ever has. I am very grateful that they are not the 5 drugs in CHOEP plus all the others they would want to use to "support" me while taking it. But, yuk. I can count at least 8 drugs in me right now between 2 thyroid, prednisone, heparin, 3 anti nausea drugs, and the Belinostat - all at once. I just pray we have made the right decision and that I can do other things that will help mitigate any damaging side effects.
I pray you are well and coping with the isolation of the pandemic. Thanks for checking in. God bless and keep you!
Here’s a pic of day one (before I felt sick). Notice the jacket with the handprints of my grandkids (needing to add Stiles), niece and nephews, and great nieces and nephews. The blanket was made by my little sister with the pics of our whole family on it. I make sure I have these treasures when I am facing the hard. I used them non-stop during the 19 day water fast. It’s like I am being hugged and held. How grateful I am for our family. My mom was so right when she said her greatest gift to us was each other. Truly.
She responded immediately by sending in a prescription for prednisone and we scheduled to start the Belinostat, the targeted chemo drug, for today -Monday, 4/13/20. I have felt amazing on the prednisone and had it in my head that Belinostat was no big deal. I know it's much less toxic than CHOEP. I was actually kind of excited to get started. I need some structure. I want to consistently feel better as it promises. I want to start thinking about what it looks like to live my full life again.
I love the people and location of where I get the IVs. Its inside a newer hospital. It is adjacent to a large children's hospital. I find myself praying for the little ones while I walk in and out - and I deeply thank God over and over again for my healthy children and grandchildren.
But today wasn't as easy peasy as I expected. They gave me 3 drugs to prevent nausea which took a long time. I generally don't feel good when I get these IVs in my port. I don't know if its the heparin they flush it with to make sure there are no clots or what. When I get high dose Vitamin C or Mistletoe, I try to sleep as much as I can and then go eat afterward to feel better.
They finally started the Belinostat. We were supposed to be there 2 hours total and we'd already been there about 2 hours by this time. Andy was able to come this first time but can't anymore - because of the pandemic. He had forgotten his glasses and was getting sleepy so he went to the truck. I found myself getting gradually more sick; I wondered if it was in my head. Finally I called the nurse over who looked at my pale face and knew I wasn't OK right away. I thought I was going to vomit with horrible nausea low in my abdomen. She took my BP which was something like 78/49. She knew I was having some kind of reaction and called other nurses over. They turned off the drug, started fluids, made sure I had a barf bag. I thought I was going to have a diarrhea attack but she said I couldn't get up right then or I'd pass out. I felt a sense of panic but worked to calm myself down. She offered Ativan for the nausea, which would make me woosy. I didn't take it.
We waited it out and I fell asleep. She said later that most people can't sleep with the amount of steroid drugs I'm on. I couldn't believe the time when I woke up and we'd been there 4 hours. They conferred with the pharmacist and doctors and restarted the Belinostat. They conferred with the literature. She said this happened in the studies but I shouldn't feel bad during my 16 days off. That made me worried I would feel like this every day I get the IVs. I still felt some nausea but I wanted to get it done and go home, which we did.
A 2 hour day turned into a 5 hour day at the hospital. 4 more to go this week, then a 16 day break.
My allusions of how easy this was going to be feel a bit shattered. I know it could all be much worse. I have a good appetite (prednisone is probably helping that). Right now I just want lots of fruit.
My body is probably in total shock. I don't take Tylenol, for example - nothing! We buy something like that and it always expires in our house. Today my body has more chemicals in it than it probably ever has. I am very grateful that they are not the 5 drugs in CHOEP plus all the others they would want to use to "support" me while taking it. But, yuk. I can count at least 8 drugs in me right now between 2 thyroid, prednisone, heparin, 3 anti nausea drugs, and the Belinostat - all at once. I just pray we have made the right decision and that I can do other things that will help mitigate any damaging side effects.
I pray you are well and coping with the isolation of the pandemic. Thanks for checking in. God bless and keep you!
Here’s a pic of day one (before I felt sick). Notice the jacket with the handprints of my grandkids (needing to add Stiles), niece and nephews, and great nieces and nephews. The blanket was made by my little sister with the pics of our whole family on it. I make sure I have these treasures when I am facing the hard. I used them non-stop during the 19 day water fast. It’s like I am being hugged and held. How grateful I am for our family. My mom was so right when she said her greatest gift to us was each other. Truly.
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