Finally, FINALLY, I got the surgery.
The good news is, they found endo. I really, truly, officially have endometriosis. I am not a slacker, a whiner, or a hypochondriac. I have a disease. (I can cope with having a disease. I can’t cope with the sneaking worries about being any or all of the above.)
The better news is, they were able to remove a lot. Given what my symptoms are, they weren’t sure that would be a possibility. So once I recover from surgery, I may be feeling a lot better, at least for a while. Or maybe I won’t. That’s fine. I’m just happy to know what’s going on.
The not-so-great news is that I don’t have a great relationship with my doctor. I have an I Have No Choice relationship with my doctor, because my husband’s coverage is an HMO plan. So there’s not much I can do about the fact that, for instance, I’m feeling condescended to. I have nowhere to send a letter like the following.
Dear Doctor: If what you mean is that most patients feel too groggy after surgery to be able to understand what the doctor is telling them, say so. Don’t say, “You’ll be so out of it that first day that you won’t understand or remember anything I’m telling you, so I’ll tell your husband and then I’ll call you the next day.” Please ask the nurses in the recovery room how groggy and out of it I was. They kicked me out early for being a big pain in the ass, something I’ll never stop being proud of. Because as soon as I reached consciousness, which wasn’t that long after the surgery, I started asking questions. “Did they find anything? Did they take it out?” Those poor women, who didn’t have the specific information I desperately wanted, kept trying to tell me that everything went fine, just fine, and could I please relax and stop sitting up like that before I hurt myself. They actually had to call a head nurse over to give me a stern talking-to about how stressing myself like this might — I am not kidding — make me get cancer.
Sadly, this failed to impress me. I didn’t settle down until they finally found my poor husband, who’d been told that I wouldn’t be up and around for at least another hour or so, and brought him in to tell me what had happened and shut me up, already. (Not that they said this, but some things you just know. And I don’t blame them at all. No one’s getting paid enough to put up with me when I’m in an I Must Know mood.) As soon as I saw husband, I lunged up (endangering my IV and stitches, thank you) and shouted, “I’m over here! What happened?” So much for groggy.
As for not understanding or remembering: I remember everything he told me. I remember the fierce joy I felt on learning that I’d been right about having endo, and then I’d been right again to opt for surgery since removing endo is a very good thing. I remember that one of the nurses who helped me get up has three children (she looks young for it) and is going to take a vacation in Carlsbad this summer. I remember that my post-surgery snack was a cranberry juice box and crackers that tasted horribly bland because, as I saw when I read the label, they were sodium-free. Heck, I remember stuff that happened in the operating room. I remember being surprised to see a doctor I’d met once before. And I remember asking him if I’d forget everything that happened even before the anesthesia hit, and he explained that I would and why. I reality-checked all this with someone who’d been there, and it all really happened. I also remember being helped onto the operating table, and being annoyed and embarrassed that my left boob flashed the crowd. I remember wondering why on earth female patients couldn’t wear some kind of loose undershirt under that surgical gown — light enough to be moved around for whatever’s necessary, big enough to cover modesty. If I had a rack worth showing, I might not mind giving her some air. I’m 43. I’ve always been small. I breastfed for more than two years. I prefer to stay what my grandmother called decently covered.
Anyway, Doctor L.: I know this was one of many such surgeries for you, but it was my first. It would have been nice if you called when you promised, because I really wanted to talk to you. Yes, you called my cell phone, which is listed on my forms as an emergency contact number because I only keep it for, you know, emergencies. I never even heard it ring. We kept the landline free all day for you — the landline that’s listed on my forms as my primary phone number. The day after my surgery happened to be a Friday. By the time we figured out what had happened, you were gone, and no other doctor was around to answer any of my questions. So I had to wait until Monday to get the whole story.
(I have a whole other letter I’d like to write to the people who run the Kaiser Permanente hotline. What a worthless piece of tripe. And we’re PAYING for it. It would be a lot cheaper and more honest if they’d set up a recording telling callers to please visit their nearest KP emergency room. That’s all they ever say, anyway. I’ve called three times since we’ve been with Kaiser, just hoping to get some basic information, and they’re afraid to give me any because their number 1 priority is covering their adorable Kaiser Ass. All they EVER say is that I should go to the emergency room. Which is what they said when I asked if, given the kind of surgery I just had, was it safe for me to take a bath. Apparently, this was such a scary concept that they were afraid even to say no. But it was a perfectly good idea, in their opinion, for me to haul my sore, bruised, swollen, stitched, incisioned sorry ass out of bed, arrange for childcare for my 13-year-old, walk down the stairs to my car, and wait around at the emergency room — where I’m sure that with an urgent question like that, I’d jump right to the head of the line. I swear, I’ve started a list of questions that I want to call the Kaiser hotline with, just to see if I can get them to budge from their emergency-room party line. “Hi, I’m tired, but I’m having trouble falling asleep. I’ve heard chamomile tea can help. I’m perfectly healthy and have no medical issues. Is the chamomile tea they sell at the grocery store safe to try, do you think?” “Hi, I got a paper cut. It’s so small it isn’t even bleeding, but I can see it’s there. Barely. When I look really, really closely. Actually, I had to use a magnifying glass. Should I wash it, apply a small quantity of topical disinfectant, and cover it with a bandage?”)
So I’m not bitter or anything. Okay, I am, a little. Because, as I said, I don’t have a good relationship with my doctor. And the post-surgical course of treatment she’s recommending doesn’t seem like a good fit for me. I’m researching like mad, and I have the feeling that what she wants me to do is too radical. Quite literally a cure that’s worse than the disease. What she’s recommending works for a lot of people who have textbook endometriosis. But I don’t have a lot of the typical symptoms of endo, and I can’t help feeling that she’s using a cookie-cutter mentality: this is what people with endo should do after they have surgery. Period.
Except that endo is a disease that manifests itself in drastically different ways from woman to woman. There is no single course of treatment that works for everyone. And by “works,” we’re talking about hitting the symptoms. There’s not even a clear consensus that the usual course of treatment will in fact slow down or stop the growth of endometrial implants. There’s some perfectly respectable skepticism on that front.
And one thing I can be certain of is that while I may not benefit from any of the medication my doctor wants me to take, I will undoubtedly suffer at least some of the side effects. If nausea is a possibility, I’m barfy. If mood swings and/or depression are an option, my body replies in the affirmative and requests a double. And all of those are on the list.
So maybe I don’t go on any long-term medication. Maybe the devil I know is better than the devil I don’t — especially now that I really do know what this demon is I’m carrying around. (I even have pictures. Really. Those stitches are from them sticking a camera down my belly button. I’d like to see if I can get wallet-size prints.) Maybe I’m happy just to know for sure what’s going on, and I rough it. Now that I have painkillers that work on the worst pain — painkillers I can drive after taking, even — I’m not so frightened any more. Maybe I start taking the kind of awesome, amazing care of myself that I did when I was pregnant: lots of exercise, lots of really good food, plenty of sleep, sunshine in the right doses.
My doctor will be furious. But this is the woman who, on hearing that I would need to thoroughly research a drug she recommended before agreeing to an injection (that’s scary to me, because it’s not like you can stop taking it if you change your mind), told me that I should check out the web site of the company that manufactures the drug. Best-case scenario, this woman has no idea what’s wrong with that picture. Worst-case, she knows how utterly wrongheaded this is, but doesn’t care; she just wants to make her Pharma-sponsors happy. Either her grasp of science is right up a tree, or my real needs are not high up on her list of priorities. Either way? I’m figuring this out on my own.
For now, I’m going to take one of the post-surgery painkillers she prescribed (and immediately started making me feel guilty about needing, since apparently I’m Rush Limbaugh just waiting to happen). I’m going to take a bath, since I finally found out that this non-medical pain relief is, in fact, allowed. I’m going to slip on some of the soft new pajamas I ordered just before I got this operation, since I’m still too swollen to fit into actual clothing. I’m going to try to relax, though it doesn’t come naturally. I’m going to try not to whine too much about not being able to go for a run, or even a decent walk. If I’m too muzzy to read, I’m going to listen to comedy albums and play computer solitaire, which I can do in bed (though not in the bath).
And when the post-surgical crankiness hits critical mass, I’m going to remind myself what a relief it is to finally know what’s going on. It’s a little thing, but it’s everything.
