Once I got home from the hospital, I spent most of my time laying on the couch or in bed. I went home with no food restrictions, but was still pretty nauseous from all the opiates. And I'm back on the twice-a-day blood thinner injections, which still hurt like the dickens. My sister had the week of Thanksgiving off, so she hung out with Greg and me one the couch that week. And we even managed to do something vaguely resembling Thanksgiving, with turkey and ham, green bean casserole, mashed potatoes, stuffing and gravy. My wonderful sister and husband did all the cooking, while I was a blob.
We spent a lot of time watching all six Star Wars movies in order, so that was fun. It had been far too long since I'd seen many of them. I needed significant amounts of help to get up and down the stairs, and out of bed or up off the couch, but both Greg and my sister were great helpers. They made me do laps around the house to get me moving, since even three laps from the living room through the kitchen and dining room and back were enough to wear me out (so going outside was not really an option). But by post-op week 2, I was able to go up and down the stairs by myself, though very slowly.
Today is post-op week 3 and my mobility is definitely better. I can walk short distances (like 1 block) without too much pain, and am nearly off all of the narcotic pain meds, though I'm nowhere near being ready to be off the ibuprophen and acetaminophen. I'm still terribly, terribly tired all the time and my brain still feels foggy (which I thought was due to the opiates, but maybe wasn't). It is still very painful to go to the bathroom, however. Like, I have tears streaming down my face and often feel like I'm going to pass out from the pain painful. But I have my post-op visit tomorrow with my surgeon and my oncologist, so hopefully they'll have some suggestions. I still think it's better than a colostomy, since the pain is relatively short-lived and infrequent. But if it's really going to be a permanent feature of my life from here on out... I honestly don't know.
The other weird thing that I've had to adjust to is it feels like all of my nerves have gotten jumbled. I can't consciously decide to go pee, for example. Whatever nerve signal used to do that is now gone. So now I have to just sit on the toilet and think very hard about running water and eventually my body figures it out. But it's a very different experience than peeing before surgery. And pooing is much the same; my body goes into these involuntary spasms that are horribly painful and I cannot control in an attempt to rid itself of waste. It works, and I'm very grateful that despite all of that I'm not incontinent, but it is weird, and disconcerting. And for the first time in my life I have pain that I absolutely cannot localize. It is a totally new and unpleasant kind of pain, that emanates roughly from my pelvis, but I am completely unable to pinpoint more exactly than that (and believe me, I've spent lots of time and energy trying and failing to localize it more specifically). I have started calling it my "phantom colon pain," because that's about as accurate as anything else. It does feel like nothing in my pelvis is working the way it's supposed to, which is hard. But as I said before, I'm not incontinent, and I managed to escape without a colostomy, so really I should be quite grateful. Talk about things you take for granted, however.
So tomorrow we meet with my surgeon and my medical oncologist. I'll get my staples out, which will be exciting, and we'll get the pathology results back, which could be good or bad. The pathology will show exactly how many of my lymph nodes have cancer, how clean the margins around the tumor were, and how big my tumor was. This information is really what determines prognosis, as well as how much more chemo I'm going to need. So I'm understandably a little apprehensive about that. So much so, in fact, that I decided I didn't want to get the results over the phone, or in an office while Greg was out of town. So they've been back for about a week, and my oncologists have seen them already. But at least this way, I won't get bad news at a time when I'm unprepared to deal with it. The visit tomorrow will also determine when I get my new port, because I need to start chemo again Jan 2. And so then we get to start planning for that.
But at least the finish line is in sight now! Worst case (okay, not really worst case because worst case is we find mets in my lungs or something and I am deemed incurable, but worst case while remaining curable) I have another 6 months of chemo ahead of me. And I know I can do chemo. It's miserable and it sucks, but it's only 4 days of miserable suckiness at a time. I'm not looking forward to the cold-sensitivity and neuropathy this go-round, since it will be very cold here in January. But we'll get through it, like everything else. And at least it does feel like most of the scary unknown unknowns have been dealt with at this point (at least until I need to have follow-up scans and have to deal with the possibility of recurrence, which is nearly uniformly fatal within 2-5 years).
Tuesday, December 6, 2011
Surgery recap
So surgery went pretty well. They took out over a third of my colon, about half my rectum, several pounds of lymph/soft tissue, my uterus and my cervix. Apparently the surgeon couldn't get my descending colon to reattach to what was left of my rectum, so she had to remove the whole descending piece and reattach the transverse colon. So, as I understand it, my colon now goes up and then comes right back down again in an inverted V-shape, rather than up and over and then down like everyone else's.
I don't remember much of the first few days in the hospital, because I was on very heavy drugs. I do remember being terribly itchy from the dilaudid in my epidural, so they took the dilaudid out and gave me a morphine pump. Very early every morning the team with all the students would come by and spend maybe 2 min talking about me, rarely to me. There was a very nice doctor on the pain team who would stop by later in the morning - I really liked her and she seemed to be actually invested in me unlike the attending and the residents. Mostly I slept a lot. My mom was there most of the time to keep me company, which was great. And Greg was there a lot of the time as well. It was so much easier being in the hospital with folks to talk to. Whenever I was awake and no one was around it was very lonely. We went ahead and sprung for nice Bose noise-cancelling headphones, and they were SOO worth it. I could listen to music or watch hulu on my ipad without having to deal with all of the ambient noise of the hospital. I found them even easier to fall asleep with than my regular earplugs (because my regular earplugs amplify my heartbeat and breathing sounds so much). I got lots of IV benadryl for the itching, so I didn't have trouble sleeping most of the time.
The nurses were great, but I do wish there was more continuity. I think I had the same day nurse once and the same night nurse twice, but other than that it was a new nurse every day and every evening, which was a little confusing. It seemed unnecessary as well, as often I would see the nurse I'd had the day before on the floor but assigned to a different patient.
Measuring urine output was a big deal in the hospital. For the first few days when I had a catheter (because I couldn't get up to go to the bathroom) it was fairly unobtrusive, they'd just check how much urine was in my lovely catheter bag and write it down. After I got the catheter out, on day 3 I believe, then whenever I wanted to go to the bathroom, I'd have to alert my nurse to put my "hat" in the toilet (the "hat" was a white plastic thing that looked like an inverted top hat with measuring lines in it), and then alert them again when I was done so that they could measure and empty it. Initially, this was not a big deal at all because I couldn't get out of bed or move 10 ft without assistance, so I'd have to page the nurse anyhow. Towards the end, however, when I was more mobile, it was quite a drag to have to page the nurse and wait for her to show up and whatnot. Also, I have never had so many people interested in my farts before! Apparently passing gas is a big milestone after bowel surgery, so every day at least six or seven people would ask me if I had passed any gas. When I finally did, my nurse literally applauded.
The first evening after surgery, I had a really rough time. I had been NPO since midnight the night before (no food or liquids) and was still not allowed to eat or drink anything, even tiny sips of water. Unfortunately, when they intubated me for the general anesthesia, they nicked my uvula (the tiny flap of flesh that hangs down in the back of your throat), so it was elongated and swollen and was resting on the back of my throat. This was causing me to gag repeatedly (basically any time I tried to talk, swallow or breathe through my mouth I would gag), which was extremely painful because I was contracting my abdominal muscles every time I gagged. Eventually, it got so bad that I was sobbing and hyperventilating and barely able to ask for something to numb my throat. So many doctors were called in, everyone was freaking out; they even brought in a crash cart. All I remember is getting hysterical that no one would get me some chloraseptic to numb my throat so that I could swallow without causing myself excruciating pain due to gagging. Eventually they figured it out and I got my chloraseptic and sure enough, I was fine afterwards, but it was apparently VERY scary for poor Greg and my mom. The only liquid I was allowed were these sponge swabs that could get dipped in water and then run over my tongue and gums to try and keep them moist. There was never enough liquid to swallow, which only made the gagging that much worse. I believe I wasn't allowed to actually drink liquids until day 3, but that first glass of apple juice was just about the tastiest thing I had ever consumed.
For several days I was on clear liquids only. So all meals consisted of broth, juice, jello and frozen lemon ice. After I finally passed gas, I was allowed to start on solid food, around day 5. The hospital has a rather insane menu of things to choose from and it's like room service: they deliver it right to your room. Unfortunately, everything I tried from their seemingly huge menu was rather terrible. I know they always say hospital food is terrible, but they had such diverse options I couldn't believe it would all be bad, but it was. By the last day, there was nothing on the menu that sounded in any way appealing, but they wouldn't discharge me until I ate something. Thankfully Greg's dad volunteered to go get me a sandwich from Au Bon Pain nearby, so that I could have something appetizing to eat to satisfy my keepers that I could go home.
The transition off of the morphine pump and on to oral painkillers was the other horrible piece. When I had my clot, my doctors initially treated the pain with more and more oxycodone, until I was taking 20-25mg/dose and at that level it lead to projectile vomiting. When they announced that they were going to transition me to oxycodone, I explained that a month ago I had been on oxycodone and it hadn't gone well, so they eventually had to switch me to MS Contin (continuous release morphine sulfate). But it didn't matter - they were going to start me at 5mg of oxycodone and see how I did. Unfortunately, the 5 mg of oxycodone was completely insufficient to tackle my pain, as was 10mg, 15mg, and 20mg. The nurse finally got approval to go up to 25mg in the middle of the night, and then I promptly threw up maybe 10 min after getting my meds. Let me just say that throwing up after major abdominal surgery is perhaps the most painful and horrible thing you can imagine. Throwing up is miserable regardless, but then the overwhelming pain from my incision made me even more nauseous than I'd been before, creating a vicious cycle that lasted for what seemed like forever. But because the nurse didn't see the oxycodone pills in my vomit, she couldn't give me any more drugs for several hours (because the oxycodone may have been absorbed). That was definitely the low point of the entire experience. And crying hurt like hell, but I couldn't stop myself, so I was just a crying, screaming, vomiting mess that night. Eventually, they were able to give me some more benadryl and put me back on the IV morphine so that I could get some sleep (it was probably 4 in the morning by this point).
The next morning, when the team came through, I explained again about my previous experiences with oxycodone and how well MS Contin had worked for me, but they insisted on putting me on oral dilaudid first. And the oral dilaudid knocked me out so I basically don't remember that day at all. And I'm missing something, because that night I threw up again, and finally insisted on MS Contin, but the resident wouldn't give it to me because I was in "acute pain" and MS Contin was a long-acting drug (each dose lasts 12 hrs). The argument that a) I've tried everything else they wanted to throw at me and have thrown it back up, b) MS Contin has been proven to work for me, and c) there was a 0.0005% chance I wouldn't be in pain in 12 hrs had no sway with this resident in the middle of the night. I'm sure I was very nasty to him, but I still don't understand why someone couldn't have made that happen for me. But I did convince him that morphine was the way to go, so then I got MS IR (instant release morphine sulfate), which is basically the same thing as MS Contin but with a shorter half-life. But spending two nights throwing up because the powers that be felt like I should go through their standard procedure was exceptionally frustrating.
Can you tell my memories of this time are all jumbled? They don't go in chronological order at all. So I apologize for the jumbled nature of all of this.
I don't remember much of the first few days in the hospital, because I was on very heavy drugs. I do remember being terribly itchy from the dilaudid in my epidural, so they took the dilaudid out and gave me a morphine pump. Very early every morning the team with all the students would come by and spend maybe 2 min talking about me, rarely to me. There was a very nice doctor on the pain team who would stop by later in the morning - I really liked her and she seemed to be actually invested in me unlike the attending and the residents. Mostly I slept a lot. My mom was there most of the time to keep me company, which was great. And Greg was there a lot of the time as well. It was so much easier being in the hospital with folks to talk to. Whenever I was awake and no one was around it was very lonely. We went ahead and sprung for nice Bose noise-cancelling headphones, and they were SOO worth it. I could listen to music or watch hulu on my ipad without having to deal with all of the ambient noise of the hospital. I found them even easier to fall asleep with than my regular earplugs (because my regular earplugs amplify my heartbeat and breathing sounds so much). I got lots of IV benadryl for the itching, so I didn't have trouble sleeping most of the time.
The nurses were great, but I do wish there was more continuity. I think I had the same day nurse once and the same night nurse twice, but other than that it was a new nurse every day and every evening, which was a little confusing. It seemed unnecessary as well, as often I would see the nurse I'd had the day before on the floor but assigned to a different patient.
Measuring urine output was a big deal in the hospital. For the first few days when I had a catheter (because I couldn't get up to go to the bathroom) it was fairly unobtrusive, they'd just check how much urine was in my lovely catheter bag and write it down. After I got the catheter out, on day 3 I believe, then whenever I wanted to go to the bathroom, I'd have to alert my nurse to put my "hat" in the toilet (the "hat" was a white plastic thing that looked like an inverted top hat with measuring lines in it), and then alert them again when I was done so that they could measure and empty it. Initially, this was not a big deal at all because I couldn't get out of bed or move 10 ft without assistance, so I'd have to page the nurse anyhow. Towards the end, however, when I was more mobile, it was quite a drag to have to page the nurse and wait for her to show up and whatnot. Also, I have never had so many people interested in my farts before! Apparently passing gas is a big milestone after bowel surgery, so every day at least six or seven people would ask me if I had passed any gas. When I finally did, my nurse literally applauded.
The first evening after surgery, I had a really rough time. I had been NPO since midnight the night before (no food or liquids) and was still not allowed to eat or drink anything, even tiny sips of water. Unfortunately, when they intubated me for the general anesthesia, they nicked my uvula (the tiny flap of flesh that hangs down in the back of your throat), so it was elongated and swollen and was resting on the back of my throat. This was causing me to gag repeatedly (basically any time I tried to talk, swallow or breathe through my mouth I would gag), which was extremely painful because I was contracting my abdominal muscles every time I gagged. Eventually, it got so bad that I was sobbing and hyperventilating and barely able to ask for something to numb my throat. So many doctors were called in, everyone was freaking out; they even brought in a crash cart. All I remember is getting hysterical that no one would get me some chloraseptic to numb my throat so that I could swallow without causing myself excruciating pain due to gagging. Eventually they figured it out and I got my chloraseptic and sure enough, I was fine afterwards, but it was apparently VERY scary for poor Greg and my mom. The only liquid I was allowed were these sponge swabs that could get dipped in water and then run over my tongue and gums to try and keep them moist. There was never enough liquid to swallow, which only made the gagging that much worse. I believe I wasn't allowed to actually drink liquids until day 3, but that first glass of apple juice was just about the tastiest thing I had ever consumed.
For several days I was on clear liquids only. So all meals consisted of broth, juice, jello and frozen lemon ice. After I finally passed gas, I was allowed to start on solid food, around day 5. The hospital has a rather insane menu of things to choose from and it's like room service: they deliver it right to your room. Unfortunately, everything I tried from their seemingly huge menu was rather terrible. I know they always say hospital food is terrible, but they had such diverse options I couldn't believe it would all be bad, but it was. By the last day, there was nothing on the menu that sounded in any way appealing, but they wouldn't discharge me until I ate something. Thankfully Greg's dad volunteered to go get me a sandwich from Au Bon Pain nearby, so that I could have something appetizing to eat to satisfy my keepers that I could go home.
The transition off of the morphine pump and on to oral painkillers was the other horrible piece. When I had my clot, my doctors initially treated the pain with more and more oxycodone, until I was taking 20-25mg/dose and at that level it lead to projectile vomiting. When they announced that they were going to transition me to oxycodone, I explained that a month ago I had been on oxycodone and it hadn't gone well, so they eventually had to switch me to MS Contin (continuous release morphine sulfate). But it didn't matter - they were going to start me at 5mg of oxycodone and see how I did. Unfortunately, the 5 mg of oxycodone was completely insufficient to tackle my pain, as was 10mg, 15mg, and 20mg. The nurse finally got approval to go up to 25mg in the middle of the night, and then I promptly threw up maybe 10 min after getting my meds. Let me just say that throwing up after major abdominal surgery is perhaps the most painful and horrible thing you can imagine. Throwing up is miserable regardless, but then the overwhelming pain from my incision made me even more nauseous than I'd been before, creating a vicious cycle that lasted for what seemed like forever. But because the nurse didn't see the oxycodone pills in my vomit, she couldn't give me any more drugs for several hours (because the oxycodone may have been absorbed). That was definitely the low point of the entire experience. And crying hurt like hell, but I couldn't stop myself, so I was just a crying, screaming, vomiting mess that night. Eventually, they were able to give me some more benadryl and put me back on the IV morphine so that I could get some sleep (it was probably 4 in the morning by this point).
The next morning, when the team came through, I explained again about my previous experiences with oxycodone and how well MS Contin had worked for me, but they insisted on putting me on oral dilaudid first. And the oral dilaudid knocked me out so I basically don't remember that day at all. And I'm missing something, because that night I threw up again, and finally insisted on MS Contin, but the resident wouldn't give it to me because I was in "acute pain" and MS Contin was a long-acting drug (each dose lasts 12 hrs). The argument that a) I've tried everything else they wanted to throw at me and have thrown it back up, b) MS Contin has been proven to work for me, and c) there was a 0.0005% chance I wouldn't be in pain in 12 hrs had no sway with this resident in the middle of the night. I'm sure I was very nasty to him, but I still don't understand why someone couldn't have made that happen for me. But I did convince him that morphine was the way to go, so then I got MS IR (instant release morphine sulfate), which is basically the same thing as MS Contin but with a shorter half-life. But spending two nights throwing up because the powers that be felt like I should go through their standard procedure was exceptionally frustrating.
Can you tell my memories of this time are all jumbled? They don't go in chronological order at all. So I apologize for the jumbled nature of all of this.
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