On hold like everyone-thanks to COV-ID 19
We went to meet with Dr. Ann Mallott, oncologist at UC Health - Memorial Hospital North. The world is so weird right now. Andy couldn't come in with me so he was on speaker in the car. The hospital felt deserted.
The facility is nice. I knew my BP was up, though. There is something about the whole conventional medical thing that gives me anxiety anymore. I wish I trusted it all but so much of it is misguided. As I often say, I know just enough to get me in trouble.
Everyone there seemed nice. It's hard to really feel like you get to know anyone though, through masks.
As Dr. Haverkos and her medical assistant both predicted, I liked the oncologist a lot. I had several questions on how things were done with Belinostat and tried to give her a very short synopsis of it all.
My main question was if it was safe to start treatment considering the pandemic.
She took the question very seriously and essentially said there wasn't a right or wrong answer.
Because of the T-Cell Lymphoma, she said my immune system already isn't working right. Then she said that the Belinostat could tank my blood counts. She also said that a lot of her patients have nausea on it; I HATE nausea. I was so sick with my pregnancies; I often said I'd do labor twice to not have nausea for months at a time.
I confirmed that, once we start this regimen, we stay on it indefinitely. She said we stay on it until it doesn't work anymore. I asked what would be our next option; at this point it would be chemo. I am hoping for more options by the time I need them.
At that moment, my symptoms were manageable. I took that as a sign from God that waiting isn't a bad idea. We decided to meet back in a month to reevaluate, hoping to have more of an idea of how this pandemic is going to play out and how I might manage it all individually.
She was so kind to say that, should I get too uncomfortable, all I have to do is message her on the portal and she'll give me more prednisone to get me through to the following Monday and we'll start treatment.
Since then, my symptoms come and go. Fatigue is the biggest problem but I know I'm not getting enough exercise, which could be contributing to that. I have trouble focusing on anything of substance so working or reading anything deep is impossible. It's hard to breathe sometimes; it's like I always have a bad cold. Sometimes the pain in my ankles and wrists make it hard to function. I still get chills once in awhile and just have to go to bed.
I got weepy as I left her office. I think I was excited to get after this, get into some kind of a life rhythm, feel better, get back to work, and just move forward. I can't complain though. The whole world is on hold right now. I try to remember that things are good - we are in our home we love in Colorado. We have each other and our loved ones seem to be coping with the isolation, uncertainty, and fear OK right now.
Love and health to you!!!
The facility is nice. I knew my BP was up, though. There is something about the whole conventional medical thing that gives me anxiety anymore. I wish I trusted it all but so much of it is misguided. As I often say, I know just enough to get me in trouble.
Everyone there seemed nice. It's hard to really feel like you get to know anyone though, through masks.
As Dr. Haverkos and her medical assistant both predicted, I liked the oncologist a lot. I had several questions on how things were done with Belinostat and tried to give her a very short synopsis of it all.
My main question was if it was safe to start treatment considering the pandemic.
She took the question very seriously and essentially said there wasn't a right or wrong answer.
Because of the T-Cell Lymphoma, she said my immune system already isn't working right. Then she said that the Belinostat could tank my blood counts. She also said that a lot of her patients have nausea on it; I HATE nausea. I was so sick with my pregnancies; I often said I'd do labor twice to not have nausea for months at a time.
I confirmed that, once we start this regimen, we stay on it indefinitely. She said we stay on it until it doesn't work anymore. I asked what would be our next option; at this point it would be chemo. I am hoping for more options by the time I need them.
At that moment, my symptoms were manageable. I took that as a sign from God that waiting isn't a bad idea. We decided to meet back in a month to reevaluate, hoping to have more of an idea of how this pandemic is going to play out and how I might manage it all individually.
She was so kind to say that, should I get too uncomfortable, all I have to do is message her on the portal and she'll give me more prednisone to get me through to the following Monday and we'll start treatment.
Since then, my symptoms come and go. Fatigue is the biggest problem but I know I'm not getting enough exercise, which could be contributing to that. I have trouble focusing on anything of substance so working or reading anything deep is impossible. It's hard to breathe sometimes; it's like I always have a bad cold. Sometimes the pain in my ankles and wrists make it hard to function. I still get chills once in awhile and just have to go to bed.
I got weepy as I left her office. I think I was excited to get after this, get into some kind of a life rhythm, feel better, get back to work, and just move forward. I can't complain though. The whole world is on hold right now. I try to remember that things are good - we are in our home we love in Colorado. We have each other and our loved ones seem to be coping with the isolation, uncertainty, and fear OK right now.
Love and health to you!!!
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