Meanwhile, back on the cancer front...
Wow, so - it's been a while. Here's the thing: I got tired of thinking about cancer all the time, and writing about cancer, and living with cancer, and advocating for people with cancer (that sounds horrible, I know, but it's true), and worrying about cancer, and telling everyone all about my cancer. So, I took a break from all that, and when I wasn't in the hospital getting spartial splenic embolizations (OW OW OW) or trying to get rid of the Pain Syndrome (don't even ask) that the first emobolization gave me or visiting new and exciting specialists, like the hepatologist (that's the liver guy, right? Not the lizard one?), I did some other things. Like read awesome books, and got a new (very part-time but totally fun) job, and revised my career goals, and spent time with my beautiful family. And did I mention that I read a lot of books?
I've been feeling pretty good for the last month or two - the medical stars (and my mom's generosity) even aligned for me to be able to travel to Chicago to see my Cubbies in the World Series (no, I didn't go to a game, I just went home and soaked it all in and was with MY PEOPLE) and reconnected with several important people I really, truly love but had not seen in waaaaay too long. And then I came home from the Cubs trip and I kept celebrating - yeah, maybe a little too much, drinking some wine and eating some chocolate and relaxing and not even reading books (house was too disorganized for me to truly relax). But part of that was because I knew that there was a deadline. And it was today. Four minutes ago, in fact.
Tomorrow at 10 am, after 12 fun hours of NPO (nil per os - "nothing by mouth" - no water, no ice cubes, no nada), I'll check into the hospital for an out-patient procedure (that doesn't sound right, does it? checking in for an out-patient procedure...hmmm) that involves me, a camera shoved down my throat, and a couple of rubber bands. It's an endoscopy, and I'll be having them every 3-4 weeks for the next several months, because it turns out that I have portal hypertension (thanks, stapled shut IVC!) and the main concern with that condition is that you get varices - bulging blood vessels - in your esophagus, and if they burst and you're not at a hospital real soon...well, you die. So, not wanting to die, I will submit to having the whole camera down the throat thing. Even though, unfortunately, the meds (versed and fentenyl - yes, the same drug that killed Michael Jackson!) they give me don't work the way they should - you're not supposed to be able to remember the procedures, but my brain refuses to turn off the way it's supposed to. I chalk this up to the fact that the first time they gave me this "twilight sedation," I woke up to discover a chalky GI specialist telling me, somewhat hysterically, that I had cancer and it was "bad." So, not so much with the knocking me out anymore using fentanyl, says my brain. Amazing, the powers of the human brain, oui? But I digress. What this means in reality is that I remember them telling me to swallow the camera, which is a very small camera in camera world, but a very large swallow in my world. I also remember them talking about finding and tying off varices, so when I "wake up" and they tell me the results of the endoscopy, I already know it. It's like deja vu, but more uncomfortable. Anyway. This will be my second endoscopy since October. Probably at least 3 more and then we'll just check in every 3-6 months (I have a sneaking suspicion that it will be three...) and make sure there aren't any more. Keep your fingers crossed!
After that fun procedure is over, I get to start preparing for my scans next week! *Clapping* With the holidays and all, and my CEA number scooting around somewhat unpredictably these last few months, my oncologist wanted scans sooner rather than later (last scans were at the beginning of September), so I'll be having those next Wednesday evening (sprinting there after volunteering at the kids' school in the am and attending my son's 2nd grade class play at 4pm!) and then discussing the results next Thursday (and recovering in time to give a scintillating talk on National Parks at the local library that evening) with my medical team and my better half. The bottom line is that I've been on the same regimen for about 18 months, which is awesome, but some signs suggest it might not be working as well as it has been. Fingers crossed that this is not the case, because I don't want to burn through any of my remaining options...but if it is the case, knowledge is power, I have a whole slew of people who love me and will help me and my family if we need to do some other treatments, and my oncologist isn't my oncologist just because he's a nice guy (I mean, he IS - a really nice guy, actually! But he's also a world class specialist in my type of cancer, and at the forefront of research and developments that may be of use to me in the future)!
So, I will update you all sooner rather than later, and those of you who are my Facebook friends and are tired of me posting every five minutes about the election can breathe a sigh of relief tomorrow that I'll be unable to use my phone for at least a couple of hours! In the meantime, don't forget that you have not only the RIGHT to vote, but the RESPONSIBILITY to do so, and that people have given their lives to give you that opportunity. Use it!
Finally, there is NOTHING that makes one thirstier for a huge glass of water than knowing that you're not allowed any water at all. Of course, as I was writing this, one of my dogs just HAD to go over to his bowl and slurp up a bunch of - yes, of course - WATER. Argh!
Peace, love, and fentanyl,
Jessica
I've been feeling pretty good for the last month or two - the medical stars (and my mom's generosity) even aligned for me to be able to travel to Chicago to see my Cubbies in the World Series (no, I didn't go to a game, I just went home and soaked it all in and was with MY PEOPLE) and reconnected with several important people I really, truly love but had not seen in waaaaay too long. And then I came home from the Cubs trip and I kept celebrating - yeah, maybe a little too much, drinking some wine and eating some chocolate and relaxing and not even reading books (house was too disorganized for me to truly relax). But part of that was because I knew that there was a deadline. And it was today. Four minutes ago, in fact.
Tomorrow at 10 am, after 12 fun hours of NPO (nil per os - "nothing by mouth" - no water, no ice cubes, no nada), I'll check into the hospital for an out-patient procedure (that doesn't sound right, does it? checking in for an out-patient procedure...hmmm) that involves me, a camera shoved down my throat, and a couple of rubber bands. It's an endoscopy, and I'll be having them every 3-4 weeks for the next several months, because it turns out that I have portal hypertension (thanks, stapled shut IVC!) and the main concern with that condition is that you get varices - bulging blood vessels - in your esophagus, and if they burst and you're not at a hospital real soon...well, you die. So, not wanting to die, I will submit to having the whole camera down the throat thing. Even though, unfortunately, the meds (versed and fentenyl - yes, the same drug that killed Michael Jackson!) they give me don't work the way they should - you're not supposed to be able to remember the procedures, but my brain refuses to turn off the way it's supposed to. I chalk this up to the fact that the first time they gave me this "twilight sedation," I woke up to discover a chalky GI specialist telling me, somewhat hysterically, that I had cancer and it was "bad." So, not so much with the knocking me out anymore using fentanyl, says my brain. Amazing, the powers of the human brain, oui? But I digress. What this means in reality is that I remember them telling me to swallow the camera, which is a very small camera in camera world, but a very large swallow in my world. I also remember them talking about finding and tying off varices, so when I "wake up" and they tell me the results of the endoscopy, I already know it. It's like deja vu, but more uncomfortable. Anyway. This will be my second endoscopy since October. Probably at least 3 more and then we'll just check in every 3-6 months (I have a sneaking suspicion that it will be three...) and make sure there aren't any more. Keep your fingers crossed!
After that fun procedure is over, I get to start preparing for my scans next week! *Clapping* With the holidays and all, and my CEA number scooting around somewhat unpredictably these last few months, my oncologist wanted scans sooner rather than later (last scans were at the beginning of September), so I'll be having those next Wednesday evening (sprinting there after volunteering at the kids' school in the am and attending my son's 2nd grade class play at 4pm!) and then discussing the results next Thursday (and recovering in time to give a scintillating talk on National Parks at the local library that evening) with my medical team and my better half. The bottom line is that I've been on the same regimen for about 18 months, which is awesome, but some signs suggest it might not be working as well as it has been. Fingers crossed that this is not the case, because I don't want to burn through any of my remaining options...but if it is the case, knowledge is power, I have a whole slew of people who love me and will help me and my family if we need to do some other treatments, and my oncologist isn't my oncologist just because he's a nice guy (I mean, he IS - a really nice guy, actually! But he's also a world class specialist in my type of cancer, and at the forefront of research and developments that may be of use to me in the future)!
So, I will update you all sooner rather than later, and those of you who are my Facebook friends and are tired of me posting every five minutes about the election can breathe a sigh of relief tomorrow that I'll be unable to use my phone for at least a couple of hours! In the meantime, don't forget that you have not only the RIGHT to vote, but the RESPONSIBILITY to do so, and that people have given their lives to give you that opportunity. Use it!
Finally, there is NOTHING that makes one thirstier for a huge glass of water than knowing that you're not allowed any water at all. Of course, as I was writing this, one of my dogs just HAD to go over to his bowl and slurp up a bunch of - yes, of course - WATER. Argh!
Peace, love, and fentanyl,
Jessica
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