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).
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