well... that was terrible... but it got better... brighter days ahead, I hope
My dear family and friends, this post has been delayed long enough. I had meant to write it over a month ago, but things kept changing... and, also, in part, because there are some days that I can barely describe what happened. And, now that I am in a different space, but still struggling a bit, it can be hard to look back--but I'll try.
Thinking back to the end of March and to the pain that began during spring break, I wrote about the pain, but I didn't write about the utter craziness that ensued with its management. Because of the opioids, I developed gastroparesis which basically means that my gut is paralyzed-- this leads to constipation and to bouts of intense nausea. The nausea would come on suddenly and ferociously. There were times when it would happen in the middle of the night and I would fall asleep on the bathroom floor because I couldn't stand up.
My doctors, of course, were intent on managing this, and they prescribed me several anti-nausea drugs-- but they didn't want to contribute more to the constipation--so they chose (in my mind) some odd choices including an anti-psychotic drug. The side effects of these included intense dizziness (I could not focus my eyes to read at all), profound fatigue, and, for one of the drugs, auditory hallucinations. I basically spent several days totally in bed. I was in a really bad spot. I was terrified. I actually met with my therapist via tele-health at this time and she was so concerned by what she saw, that she reached out to my doctors. It was scary.
So, it was really bad. BUT once we stopped the nausea drugs, I began to clear from these side-effects and felt SO MUCH BETTER. Luckily, the nausea stopped too--hard to know why, but I don't care!
Most of this happened the first week that we returned to school from spring break (the week of March 30th), so, luckily everyone was so busy being overwhelmed by learning how to do school online, that no one was noticing that the psychologist had an away message. I began to feel better on that Thursday, and I actually did a little work. I have never been so grateful to return to work (via my computer at home). The feeling of being a normal person who can contribute, and be capable, and be alert, and function--this is so crucial to my understanding of myself that I just relished the opportunity to go to work. I was honestly giddy and joyful that day. I think part of it was my gratitude that I could work, and part of it was relief that I was not going to feel miserable forever.
Overall, as I made it through April, my pain became more managed. I still struggle with bending forward and being comfortable when I sit. The challenge with the gastroparesis has primarily been dealing with the constipation. I have been on this delightful pattern of needing to take intense laxatives every other day; which, as you might imagine, is highly unpleasant. I don't think I will share the stories I have of those low moments--but they are grim.
And now, weeks later, I have begun another new medication to manage the gastroparesis. On Friday (May 1st), I was scheduled to take my first dose of a med that is designed to wake up my paralyzed bowels. My doc had said that I could expect "some cramping"-- well, as you might guess-- that "some" was extreme. I ended up unexpectedly taking the rest of the day off because the cramping was more than I could handle sitting up. I actually didn't even take any my other meds or eat at all because my stomach was in so much pain. I spent the entire day in bed taking small sips of water. I did get better by the evening--thank goodness-- but began to dread the next dose in the morning. As it turned out, these subsequent doses have not been nearly as bad-- but they certainly have tough waves of cramping. I am told it will get better with each dose. I will be hopeful. I am also hopeful that it will help my appetite return and put an end to the crazy laxative routine. So far there has been some small evidence of both. Yay for all victories, big and small!
I will say, though, that this medication is super annoying because it also extends my morning med routine another 30 minutes. I am already on a med that I have to take and then wait 30 min before having anything other than plain water. THEN, I take this med, which does not limit me to plain water-- so that's nice-- but does not let me take other meds or have breakfast. Guys, this means that I now must always wake up at least an hour before I go anywhere. With my fatigue, I like to sleep in as much as possible. I am pretty annoyed by this. I really just wish it were easier.*
OK, so I've whined and whinged enough through this post. I've let you know way too much about the minutiae of my meds and bowels... you must be really committed if you've gotten this far in this extensive post! Well, as a reward, I will give you the very buried lede that probably should be a post all its own.
I had an MRI mid April and got the results: this pain is not due to the cancer spreading or the tumor growing. HURRAH!!!
The thought that these results would be bad news weighed so very heavily on me throughout March and until I received the news. This good news lifted my heart to the sky. I realized that I could manage all of the annoying things that I've whinged about in this post because I was going to be ok. This has become a phrase that I mutter to myself as a mantra throughout the day: It's going to be ok. I am going to be ok.
Now to answer the obvious next question, OK, so then what is the deal with the pain?
The pain appears to be from changes/damage from the radiation I had last August. I can't tell you what exactly those changes are. They said something about nerve damage-- but really just said "changes" and I am not sure what changed. This info is gleaned from MRI images. At some point, I will write some articulate questions to my oncologist and palliative care doc in order to understand more about what exactly these changes are, but for now, I am just grateful that my worst fears are not true.
For now, I will just appreciate that the cancer is stable and there is no evidence of anything bad happening in other important parts of my body. Gratitude exudes from every one of my pores.
While I am annoyed by the pill routine, and I am uncomfortable when I bend or move in certain ways, and of course there are the irritating side effects that linger like fatigue-- there isn't anything I can't handle or manage (including the "oh yeah, they changed our insurance on May 1st!!! so I've been dealing with that too" thing... 😩... we won't go into that here or now...). I am so grateful for the support of Chris--my personal superhero--and the virtual support of everyone who reaches out. You guys, it means so much, really. I love all the snaps, and instas, and texts, and the snail mail-- it just brightens me to infinity and beyond. I appreciate your patience with me too--I am not perfect in responding. But please know, that I love the communication.
Communication is so key now. Especially in this whole Covid-19-Coronavirus-SARS-Cov-2-whatever, I am feeling this isolation--and it is taking its toll. We are all in this storm together, and I know it is impacting us all in various ways. I am lucky because Chris is an amazing partner, and I couldn't be more grateful to be stuck in our little apartment with him. He sings all day long to the cat and to me--all while being a total rockstar at his job.
Thank you all for helping me get through this madness. I miss you all.
XOXO
A
*I Really Just Wish It Were Easier is going to be the sequel to my autobiography All the Things, All the Time, All at Once ;)
Thinking back to the end of March and to the pain that began during spring break, I wrote about the pain, but I didn't write about the utter craziness that ensued with its management. Because of the opioids, I developed gastroparesis which basically means that my gut is paralyzed-- this leads to constipation and to bouts of intense nausea. The nausea would come on suddenly and ferociously. There were times when it would happen in the middle of the night and I would fall asleep on the bathroom floor because I couldn't stand up.
My doctors, of course, were intent on managing this, and they prescribed me several anti-nausea drugs-- but they didn't want to contribute more to the constipation--so they chose (in my mind) some odd choices including an anti-psychotic drug. The side effects of these included intense dizziness (I could not focus my eyes to read at all), profound fatigue, and, for one of the drugs, auditory hallucinations. I basically spent several days totally in bed. I was in a really bad spot. I was terrified. I actually met with my therapist via tele-health at this time and she was so concerned by what she saw, that she reached out to my doctors. It was scary.
So, it was really bad. BUT once we stopped the nausea drugs, I began to clear from these side-effects and felt SO MUCH BETTER. Luckily, the nausea stopped too--hard to know why, but I don't care!
Most of this happened the first week that we returned to school from spring break (the week of March 30th), so, luckily everyone was so busy being overwhelmed by learning how to do school online, that no one was noticing that the psychologist had an away message. I began to feel better on that Thursday, and I actually did a little work. I have never been so grateful to return to work (via my computer at home). The feeling of being a normal person who can contribute, and be capable, and be alert, and function--this is so crucial to my understanding of myself that I just relished the opportunity to go to work. I was honestly giddy and joyful that day. I think part of it was my gratitude that I could work, and part of it was relief that I was not going to feel miserable forever.
Overall, as I made it through April, my pain became more managed. I still struggle with bending forward and being comfortable when I sit. The challenge with the gastroparesis has primarily been dealing with the constipation. I have been on this delightful pattern of needing to take intense laxatives every other day; which, as you might imagine, is highly unpleasant. I don't think I will share the stories I have of those low moments--but they are grim.
And now, weeks later, I have begun another new medication to manage the gastroparesis. On Friday (May 1st), I was scheduled to take my first dose of a med that is designed to wake up my paralyzed bowels. My doc had said that I could expect "some cramping"-- well, as you might guess-- that "some" was extreme. I ended up unexpectedly taking the rest of the day off because the cramping was more than I could handle sitting up. I actually didn't even take any my other meds or eat at all because my stomach was in so much pain. I spent the entire day in bed taking small sips of water. I did get better by the evening--thank goodness-- but began to dread the next dose in the morning. As it turned out, these subsequent doses have not been nearly as bad-- but they certainly have tough waves of cramping. I am told it will get better with each dose. I will be hopeful. I am also hopeful that it will help my appetite return and put an end to the crazy laxative routine. So far there has been some small evidence of both. Yay for all victories, big and small!
I will say, though, that this medication is super annoying because it also extends my morning med routine another 30 minutes. I am already on a med that I have to take and then wait 30 min before having anything other than plain water. THEN, I take this med, which does not limit me to plain water-- so that's nice-- but does not let me take other meds or have breakfast. Guys, this means that I now must always wake up at least an hour before I go anywhere. With my fatigue, I like to sleep in as much as possible. I am pretty annoyed by this. I really just wish it were easier.*
OK, so I've whined and whinged enough through this post. I've let you know way too much about the minutiae of my meds and bowels... you must be really committed if you've gotten this far in this extensive post! Well, as a reward, I will give you the very buried lede that probably should be a post all its own.
I had an MRI mid April and got the results: this pain is not due to the cancer spreading or the tumor growing. HURRAH!!!
The thought that these results would be bad news weighed so very heavily on me throughout March and until I received the news. This good news lifted my heart to the sky. I realized that I could manage all of the annoying things that I've whinged about in this post because I was going to be ok. This has become a phrase that I mutter to myself as a mantra throughout the day: It's going to be ok. I am going to be ok.
Now to answer the obvious next question, OK, so then what is the deal with the pain?
The pain appears to be from changes/damage from the radiation I had last August. I can't tell you what exactly those changes are. They said something about nerve damage-- but really just said "changes" and I am not sure what changed. This info is gleaned from MRI images. At some point, I will write some articulate questions to my oncologist and palliative care doc in order to understand more about what exactly these changes are, but for now, I am just grateful that my worst fears are not true.
For now, I will just appreciate that the cancer is stable and there is no evidence of anything bad happening in other important parts of my body. Gratitude exudes from every one of my pores.
While I am annoyed by the pill routine, and I am uncomfortable when I bend or move in certain ways, and of course there are the irritating side effects that linger like fatigue-- there isn't anything I can't handle or manage (including the "oh yeah, they changed our insurance on May 1st!!! so I've been dealing with that too" thing... 😩... we won't go into that here or now...). I am so grateful for the support of Chris--my personal superhero--and the virtual support of everyone who reaches out. You guys, it means so much, really. I love all the snaps, and instas, and texts, and the snail mail-- it just brightens me to infinity and beyond. I appreciate your patience with me too--I am not perfect in responding. But please know, that I love the communication.
Communication is so key now. Especially in this whole Covid-19-Coronavirus-SARS-Cov-2-whatever, I am feeling this isolation--and it is taking its toll. We are all in this storm together, and I know it is impacting us all in various ways. I am lucky because Chris is an amazing partner, and I couldn't be more grateful to be stuck in our little apartment with him. He sings all day long to the cat and to me--all while being a total rockstar at his job.
Thank you all for helping me get through this madness. I miss you all.
XOXO
A
*I Really Just Wish It Were Easier is going to be the sequel to my autobiography All the Things, All the Time, All at Once ;)
All the love. All the time.
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