Post 3rd series of Belinostat
I'm up in the middle of the night again. I have symptoms showing up and was laying there thinking I should document how they are different than between treatments before and then realized I wasn't going back to sleep...it's been awhile since I've checked in here.
Thank you so much for taking time out of your life to read my thoughts and documentation of this journey. The love I receive and the prayers on my behalf buoy me constantly. Lately I've been saying that I don't any real problems because of so much going on. We have dear friends with a 1 year old with cancer or something that looks like cancer. She just got a port put in and is getting all set up for treatment. Ugh. We have a dear friend and past neighbor with a very painful chronic condition. She's alone in the hospital right now dealing with much uncertainty. Nolan and Lexie lost a dear friend to a shark attack and are in California with his widow and for work. There is an acquaintance from our old church who has been battling cancer for 7 long years, all conventionally with devastating treatment over and over and over. She just started again with a very poor prognosis. And...Andy spoke with a very long time friend today whose two children were completely consumed as young adults by drugs and he's living a nightmare many years later that I can't imagine. I pray for these and so many other overwhelming things going on. Tonight I am consumed by the thought of my eldest son as he is sitting in a firetruck outside a police station or headquarters or something - in case rioters try to set it ablaze. I wish I hadn't seen a post today of a police officer in another country being set on fire (he was OK) by rioters. Tomorrow we will be going to Denver to attend a Sunday morning legislative hearing on a bill geared toward the trend of taking vaccine choice away from parents, including homeschoolers, the amish, and groups such as that... If you read my Fb posts, you know this is where I draw the line - people should have control of what is injected into their bodies and that of their children. The world feels so fragile and violent and unpredictable right now - for everyone.
I did my 3rd set of 5 days of treatment last week and it went pretty well. I am able to function pretty well the mornings of treatment so I've decided to work remotely those days the rest of the summer. It's been exciting joining in on some meetings and seeing some students. I have really missed them and my coworkers - it's so strange to think that they have missed their coworkers and students too. I have to remind myself that they have not been on campus. Working from home for our job sounds pretty challenging. We do lots of paperwork and use tons of resources to help students and apparently it just all takes tons a lot more time than appointments in person. People are reporting that they are working many extra hours and the boundaries between home and work, personal life and students' needs are pretty much gone. Some of my coworkers seemed so weary on a zoom call.
As I go through the week of treatment, it appears to be cumulatively harder on my body, however. The nurse was so alarmed by how I looked and felt by Friday. As I'm getting the Belinostat infusion, I get pale and clammy and feel like I could throw up. I feel incredibly bad; it's like my whole digestive system is in pain. Nothing appears to help; I'm on 4 different anti-nausea drugs, I've tried pressure points, essential oils, ginger and ginger ale, soda crackers, eating before, fasting... I am convinced I just need to gut it out for the few hours that it is really bad. This time I went camping with Andy, our son, his wife, and their 4 little ones the next day - off grid for 5 days. Distraction those days seems to be good for me. I don't feel great, but I can manage it. I take naps and love to eat when I don't feel well.
I was super concerned because I gained a full 10 lbs the 9 days I was on Prednisone and treatment. My jeans were super tight and I was convinced it was weight gain. Fortunately, when I stopped the Prednisone, what must have been mostly water weight came off, only leaving an extra pound or two. I was once about 85 lbs heavier than I am now and I don't want to creep back there.
The first round of treatment, my ankles hurt badly about a week later and the swelling came back in my hands and wrists so I started Prednisone. The 2nd round, it was my right knee and left ankle (on the outside top) that hurt. My right hand had a hard line of painful bumps form from the base of the pinkie to the wrist. Prednisone again. This time, I started having a strange pain when I walk at the base of my 2nd toe a few days ago and it looks swollen from the top and bottom of my foot. Tonight I woke up pretty sore and stiff all over, it's hard to walk, and the line of painful bumps is back on my right hand. It looks like I have a water balloon under my left wrist again. I suppose it's time to start Prednisone again but I sure wish I didn't have to go there. It's a powerful steroid that can change personality, promote diabetes, my BP is high on it, promote bone loss... It's been like a miracle drug for me, though. I continue to wonder if I should just manage symptoms with it and drop everything else. The doctors would freak out if I decided that because to them that means I am not even trying to treat the cancer. They don't realize there are so many things we can do to help our body manage it.
About a month ago I noticed a dime-sized flat pink spot on my leg. It is growing but waxes and wanes. It can get to be larger than a quarter. I am concerned I am developing the cutaneous form of T-Cell Lymphoma and, again, I am wondering if Belinostat is doing me any good or is it harming my body's ability to keep this disease at bay. As I've mentioned before, I know that I am leaning on the drug rather than my own efforts, which has been a relief. I haven't been juicing, taking all the supplements, detoxing, eating tons of veggies and fruits, meditating, exercising...enough. I did a lot of forest bathing this week though. (-: I am praying for that new start that I need where I feel like I can maintain a regimen long term. I am tired of "trying things" and the fits and starts. So I'm finding it hard to get back on the horse that takes a lot of time and self-discipline.
I pray you and yours are well and, again, thanks for the support!!!! xoxo
Thank you so much for taking time out of your life to read my thoughts and documentation of this journey. The love I receive and the prayers on my behalf buoy me constantly. Lately I've been saying that I don't any real problems because of so much going on. We have dear friends with a 1 year old with cancer or something that looks like cancer. She just got a port put in and is getting all set up for treatment. Ugh. We have a dear friend and past neighbor with a very painful chronic condition. She's alone in the hospital right now dealing with much uncertainty. Nolan and Lexie lost a dear friend to a shark attack and are in California with his widow and for work. There is an acquaintance from our old church who has been battling cancer for 7 long years, all conventionally with devastating treatment over and over and over. She just started again with a very poor prognosis. And...Andy spoke with a very long time friend today whose two children were completely consumed as young adults by drugs and he's living a nightmare many years later that I can't imagine. I pray for these and so many other overwhelming things going on. Tonight I am consumed by the thought of my eldest son as he is sitting in a firetruck outside a police station or headquarters or something - in case rioters try to set it ablaze. I wish I hadn't seen a post today of a police officer in another country being set on fire (he was OK) by rioters. Tomorrow we will be going to Denver to attend a Sunday morning legislative hearing on a bill geared toward the trend of taking vaccine choice away from parents, including homeschoolers, the amish, and groups such as that... If you read my Fb posts, you know this is where I draw the line - people should have control of what is injected into their bodies and that of their children. The world feels so fragile and violent and unpredictable right now - for everyone.
I did my 3rd set of 5 days of treatment last week and it went pretty well. I am able to function pretty well the mornings of treatment so I've decided to work remotely those days the rest of the summer. It's been exciting joining in on some meetings and seeing some students. I have really missed them and my coworkers - it's so strange to think that they have missed their coworkers and students too. I have to remind myself that they have not been on campus. Working from home for our job sounds pretty challenging. We do lots of paperwork and use tons of resources to help students and apparently it just all takes tons a lot more time than appointments in person. People are reporting that they are working many extra hours and the boundaries between home and work, personal life and students' needs are pretty much gone. Some of my coworkers seemed so weary on a zoom call.
As I go through the week of treatment, it appears to be cumulatively harder on my body, however. The nurse was so alarmed by how I looked and felt by Friday. As I'm getting the Belinostat infusion, I get pale and clammy and feel like I could throw up. I feel incredibly bad; it's like my whole digestive system is in pain. Nothing appears to help; I'm on 4 different anti-nausea drugs, I've tried pressure points, essential oils, ginger and ginger ale, soda crackers, eating before, fasting... I am convinced I just need to gut it out for the few hours that it is really bad. This time I went camping with Andy, our son, his wife, and their 4 little ones the next day - off grid for 5 days. Distraction those days seems to be good for me. I don't feel great, but I can manage it. I take naps and love to eat when I don't feel well.
I was super concerned because I gained a full 10 lbs the 9 days I was on Prednisone and treatment. My jeans were super tight and I was convinced it was weight gain. Fortunately, when I stopped the Prednisone, what must have been mostly water weight came off, only leaving an extra pound or two. I was once about 85 lbs heavier than I am now and I don't want to creep back there.
The first round of treatment, my ankles hurt badly about a week later and the swelling came back in my hands and wrists so I started Prednisone. The 2nd round, it was my right knee and left ankle (on the outside top) that hurt. My right hand had a hard line of painful bumps form from the base of the pinkie to the wrist. Prednisone again. This time, I started having a strange pain when I walk at the base of my 2nd toe a few days ago and it looks swollen from the top and bottom of my foot. Tonight I woke up pretty sore and stiff all over, it's hard to walk, and the line of painful bumps is back on my right hand. It looks like I have a water balloon under my left wrist again. I suppose it's time to start Prednisone again but I sure wish I didn't have to go there. It's a powerful steroid that can change personality, promote diabetes, my BP is high on it, promote bone loss... It's been like a miracle drug for me, though. I continue to wonder if I should just manage symptoms with it and drop everything else. The doctors would freak out if I decided that because to them that means I am not even trying to treat the cancer. They don't realize there are so many things we can do to help our body manage it.
About a month ago I noticed a dime-sized flat pink spot on my leg. It is growing but waxes and wanes. It can get to be larger than a quarter. I am concerned I am developing the cutaneous form of T-Cell Lymphoma and, again, I am wondering if Belinostat is doing me any good or is it harming my body's ability to keep this disease at bay. As I've mentioned before, I know that I am leaning on the drug rather than my own efforts, which has been a relief. I haven't been juicing, taking all the supplements, detoxing, eating tons of veggies and fruits, meditating, exercising...enough. I did a lot of forest bathing this week though. (-: I am praying for that new start that I need where I feel like I can maintain a regimen long term. I am tired of "trying things" and the fits and starts. So I'm finding it hard to get back on the horse that takes a lot of time and self-discipline.
I pray you and yours are well and, again, thanks for the support!!!! xoxo
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