In an earlier post, I wrote about how my anesthesiologist was a super weirdo the morning of my surgery. Like, weird enough that he actually freaked me out. Granted, I was in easy freak-out mode, but still. I usually try to give medical folks the benefit of the doubt, but man.
Anyhow, I went into full freak-out mode when he was putting the epidural in me while I was fully conscious. He ran his finger up and down my backbone, commenting, 'I see you have scoliosis.' Why yes, yes I do. He asked if I had ever had surgery for it. I told him I had not, meanwhile freaking out thinking OMG, is it so bad that it looks like I should have had surgery for it?! My scoliosis was discovered in a routine, elementary-school screening, but I was always told it was not severe. Then again, I was also told I had 'mild' hip dysplasia by an actual hip doctor who really should have known better. So while the anesthesiologist appeared to be fumbling around, walking his fingers up and down my vertebrae, trying to figure out where to put the epidural in, I of course started crying. I know I write a lot of entries the involve me crying, but something you should know about me is that I rarely cry. On the surface, I am - or at least, I've been told that I am - very stoic and unemotional. So if I'm crying, I'm in a really bad place mentally.
It was about that time that he barked at the nurse to give me some Versed, also known as 'happy juice,' and I honestly don't remember much after that.
So on Tuesday, when he came strolling into my hospital room, I honestly had no idea who he was. First of all, all these surgeons look the same to me in their surgeon outfits with their head covered. Second of all, I'm, like, blind as a bat without my contacts in (20/900, in case you don't believe me), and I obviously did not have them in pre-surgery. I do have glasses, but they aren't the greatest, just because I'm so very dependent on contacts, and have been since I was 10 years old.
'Hi!' he said very cheerfully.
'Um, hi?' I responded, thinking it was some surgeon in the wrong room or something. Or maybe it was Christian, the PA, who is also a very generic looking white dude?
'Do you remember me?' he asked.
'Yes,' I lied. (WTF, why did I lie? What if it really had been a surgeon in the wrong room? LOL.)
Fortunately, right about the time I was lying, he was re-introducing himself as Dr. S, the anesthesiologist. He was very pleasant, not weird at all. He said he was there to check on my epidural and see how my pain levels were. I told him my pain levels were creeping up, but that I was anxious to get the epidural out so that I could have the catheter removed, because it was VERY uncomfortable. (Honestly, I don't think it was put in properly.) Also, the epidural made both legs numb, which basically made me unable to move, which was uncomfortable once the drugs started to wear off and I became more alert mentally. Christian, the surgeon's PA, had made it very clear that the epidural had to come out before the catheter, and had made both me and my husband repeat E comes before F; EF - meaning, epidural first, then (Foley) catheter. I guess in the past, the reverse has happened, leaving the patient with no way to pee, and he wanted to be sure it didn't happen to me - so, you know, I could advocate for myself if anyone tried to take out my catheter too soon.
Dr. S understood my desire to get the epidural out, and cut back the amount of meds coming through the epidural and said that he could take it out the next day, at which point I could transition to oral pain meds.
Then he commented, 'You look like you're in a lot of pain.'
I couldn't deny it.
'I've heard this is one of the most painful surgeries there is,' he added.
I couldn't deny that, either. Not that I've had every surgery that exists, but I did tell him I could certainly believe it.
He lingered a little longer, sitting down on the edge of the bed, or on a chair, or something. Making himself comfortable. Different from everyone else who is constantly on the go, go, go. It was evening, my husband had gone back home to tend to our kiddos that morning, so the company was welcome. Then he explained, 'I guess I'm interested in your experience because my daughter has hip dysplasia, and I'm not sure what to do.' He went on to say that she had been diagnosed as a baby, and spent a year in a cast, which is what they do to babies with hip dysplasia. (Google 'cast for hip dysplasia' if you need a visual. It's not pretty.) The goal is to force the head of the femur into the acetabulum at a different angle to cause the acetabulum to develop deeper. It helps, but it's not always enough. Lots of the people who end up having PAOs in their teens and 20s were treated as babies with a cast or a brace. I didn't need to tell Dr. S this. Obviously he knew already. I told him that must have been very difficult to deal with, and he admitted that it was. Then I asked how old his daughter was now, and he said she was 12. I asked if her hips ever bothered her, and he replied, 'No, but...' and trailed off.
No, but...
But they will. It's coming. It's very likely coming. He didn't have to say this. He knows. I know. I also understood his concern for me was more because he was imagining his daughter in my place, trying to wrap his mind around going through this with his daughter. Honestly, I can't imagine. As much of wreck as I was, I would have been infinitely worse if it had been my daughter instead of me. And honestly, after educating myself about hip dysplasia, I am very worried my own daughter may have it as well, and that one day soon, her hips will start hurting, and I'll find myself in the same place as Dr. S, knowing what will happen if you don't treat it, but also wondering if it's something you want your teenage daughter to have to go through.
Throughout my hospital stay, the nurses commented on how tough I was, even when I was screaming and howling and not feeling tough at all. More than one of them mentioned that most of people they see who are having this particular surgery are teenage girls, 'and they have no coping mechanisms.' LOL. But in all seriousness, I can't imagine going through this surgery as a teenager, nor can I imagine going through it with my daughter when she's a teenager. Obviously Dr. S couldn't imagine it either.
We chatted some more, about how it was incredible I was never diagnosed earlier, and that my hips never bothered me a whole lot, and how it was probably better that I wasn't diagnosed as a baby because I'm not sure my parents could have handled it. It was actually a fairly intense conversation, a heart-to-heart from a parent to another parent, over a shared experience - both of us struggling with choices, worrying about the same thing, trying to do the right thing.
After a good 5-10 minutes, Dr. S said, 'Well, I should go. I'll see you tomorrow,' and sauntered out.
Later, one of the nurses told me that she was pretty sure he had never done this before, not for this type of surgery. So this was his first experience with PAO, a surgery he knew in the back of his mind his daughter might need someday. That must have been a tough experience for him. And it was a good reminder that we're all just... human. Flailing our way through this weird experience we call life, by putting one foot in front of the other. That is, if we're lucky enough to have the luxury of two working legs.
Thursday, August 3, 2017
Wednesday, August 2, 2017
Take it Easy
I mentioned that I've joined a couple of online 'support' groups for people with hip dysplasia, many of whom have had a periacetabular osteotomy, and some of whom have had a PAO with my surgeon, Dr. Terminator. I believe I mentioned that I've put my full faith into this guy because in all of my vetting, no one has had anything bad to say about him. His patients not only LOVE him, but also think he is BRILLIANT, and many would trust him with their lives! So obviously that makes me feel good, and as an educator who is subject to wrath of students on sites such as RateMyProfessors, it's pretty amazing he doesn't even have a few disgruntled ex-patients going out of their way to badmouth him.
That said, I don't get it. I mean, Dr. Terminator is... fine. And like I said, I don't think bedside manner is the most important thing when it comes to surgery, and especially not a big one like a PAO. I'm far more concerned with whether the surgeon knows what the hell he's doing than if he has a compatible personality and takes the time to make awesome small talk with me. Been there, done that. I'm over it. I mean, it never hurts for a surgeon to be caring and compassionate, but those aren't my top priorities. So don't get me wrong, I'm not complaining. But I'm just not seeing that side of Dr. Terminator that pretty much makes my local PAO Facebook Group a Dr. Terminator fan club. I dunno, maybe I'm just picky, or bitchy, or overly high maintenance, and maybe he just doesn't like me, but there's seriously nothing lovable about the man that I've noticed. In fact, aside from the two pre-op appointments I've had with him, during which he was fine, but certainly not AMAZING, I've hardly seen the man.
Before surgery #1, he came in briefly, as surgeons usually do, and gave us about 30 seconds of his time, during which he said something to the effect of You'll be fine. LOL. After the surgery, he came in and asked me how I was feeling, and I said sleepy, and he said, Good, go back to sleep. Granted, he apparently spent more time debriefing with my husband, explaining how everything had gone, what he had done, and so forth, but still. It's not exactly a lovefest here! For surgery #2, he didn't bother to come in beforehand. When he came by afterward, it was, like, 8:00 PM, and he looked tired. Obviously the man works crazy hard, so I resisted the urge to make some snide comment like, Whoa, so you are real after all! And, of course, I was crazy drugged up so it's not like we were going to have some deep conversation or anything. In fact, I have no idea what we talked about. I do think maybe he told me he was happy with the outcome, the coverage he was able to give me, and the placement of the screws. Something like that. Or maybe that was the next day; it's hard to say.
Fortunately, Dr. Terminator seems to have assembled a very competent and effective team of people around him. So the whole package is good. It's not that I don't feel well cared for, I'm just not feeling the love that everyone else seems to feel, and I'm starting to wonder if it's me. Ha. I don't feel like I'm a particularly problematic patient, but maybe I am. If I had to describe Dr. Terminator's style, I'd say it's tough love, minus the love. LOL. His PA, Christian, seems to have taken over a lot of the hand-holding duties with me that Dr. Terminator apparently takes on with other patients. But Christian, too, is an interesting fellow. Mostly in a good way, but sometimes he gives off this vibe that makes me feel like he's silently judging me, thinking, Wow woman, you are a fruitcake, and I can't wait to get away from you! I mean, I know I'm a crazy fruitcake, but I don't think I actually act like one most of the time. It's as if I'm some lunatic trapped in the vessel of a totally normal person, so when I feel like people can see through to the crazy me, it creeps me out a little.
One of the hardest days after the surgery, either the second or third day, Christian was in my hospital room, and I just LOST IT. I don't even remember why, but it was surely some combination of self-pity, self-loathing, loneliness, frustration, drugs, and all-time high pain levels converging to some undignified moment where a grown woman finds herself sobbing inexplicably and inconsolably. The type of moment where you just need a hug, some human contact, someone to tell you it's going to be okay, even if it isn't. Christian did nothing; he stood there quietly, saying nothing, looking at me. And I could not. stop. crying. And since he was just standing there, staring at me, I finally said in between heaves, I'm sorry, because I didn't know what else to say and I guess I somehow wanted to give him permission to leave if he wasn't going to do anything but stare at me like I just sprouted a second head. And I was sorry, sorry for myself that I was having this total meltdown in front of some guy I barely know, sorry that I was clearly making him uncomfortable and wishing he could leave, sorry that I was letting someone else see me in one of my worst moments, which I usually hold inside my head where only I can experience them, and occasionally try to write about them. Finally, he very bluntly and unapologetically told me, Don't be sorry, while I continued to cry and hyperventilate like a three-year-old having a tantrum. Then he said, You just had your hip bone cut into pieces, and a bunch of muscles detatched and reattached. It's a lot to go through. You need to be easier on yourself.
You need to be easier on yourself.
What exactly does that even mean? Nonetheless, in that moment, I found some solace in it, the closest thing to a lifeline that I could grab onto; Christian's best offering. He's giving me permission to cry like a blathering idiot and not feel bad about it. Or he's giving me permission to feel sorry for myself, to fully accept I'm on this lonely journey that no one understands nor really cares to understand. Or he's giving me permission to hate myself, for being emotionally weak, for living in this ridiculously horrible deteriorating body. Or he's giving me permission to cry because this hurts so. damn. bad. He's giving me permission to show my worst, most pathetic side. Whatever the case, he and the nurse briefly colluded, and I ended up getting some combination of drugs that knocked my pain level down significantly, but more importantly, knocked me out cold. When I woke up, it was the middle of the night, and the lights were out, and I was calm, and Christian was long gone. He gave me permission to cry myself to sleep, and himself permission to leave after a long day of work, and go home. It's only fair. If I have permission to cry and yell and rant and lose it, then certainly the people who care for me have permission to not be able to help every person they see who is crying and yelling and ranting and losing it. We all get to go easier on ourselves.
I'm trying, I'm really trying. To be easier on not just myself, but also others.
That said, I don't get it. I mean, Dr. Terminator is... fine. And like I said, I don't think bedside manner is the most important thing when it comes to surgery, and especially not a big one like a PAO. I'm far more concerned with whether the surgeon knows what the hell he's doing than if he has a compatible personality and takes the time to make awesome small talk with me. Been there, done that. I'm over it. I mean, it never hurts for a surgeon to be caring and compassionate, but those aren't my top priorities. So don't get me wrong, I'm not complaining. But I'm just not seeing that side of Dr. Terminator that pretty much makes my local PAO Facebook Group a Dr. Terminator fan club. I dunno, maybe I'm just picky, or bitchy, or overly high maintenance, and maybe he just doesn't like me, but there's seriously nothing lovable about the man that I've noticed. In fact, aside from the two pre-op appointments I've had with him, during which he was fine, but certainly not AMAZING, I've hardly seen the man.
Before surgery #1, he came in briefly, as surgeons usually do, and gave us about 30 seconds of his time, during which he said something to the effect of You'll be fine. LOL. After the surgery, he came in and asked me how I was feeling, and I said sleepy, and he said, Good, go back to sleep. Granted, he apparently spent more time debriefing with my husband, explaining how everything had gone, what he had done, and so forth, but still. It's not exactly a lovefest here! For surgery #2, he didn't bother to come in beforehand. When he came by afterward, it was, like, 8:00 PM, and he looked tired. Obviously the man works crazy hard, so I resisted the urge to make some snide comment like, Whoa, so you are real after all! And, of course, I was crazy drugged up so it's not like we were going to have some deep conversation or anything. In fact, I have no idea what we talked about. I do think maybe he told me he was happy with the outcome, the coverage he was able to give me, and the placement of the screws. Something like that. Or maybe that was the next day; it's hard to say.
Fortunately, Dr. Terminator seems to have assembled a very competent and effective team of people around him. So the whole package is good. It's not that I don't feel well cared for, I'm just not feeling the love that everyone else seems to feel, and I'm starting to wonder if it's me. Ha. I don't feel like I'm a particularly problematic patient, but maybe I am. If I had to describe Dr. Terminator's style, I'd say it's tough love, minus the love. LOL. His PA, Christian, seems to have taken over a lot of the hand-holding duties with me that Dr. Terminator apparently takes on with other patients. But Christian, too, is an interesting fellow. Mostly in a good way, but sometimes he gives off this vibe that makes me feel like he's silently judging me, thinking, Wow woman, you are a fruitcake, and I can't wait to get away from you! I mean, I know I'm a crazy fruitcake, but I don't think I actually act like one most of the time. It's as if I'm some lunatic trapped in the vessel of a totally normal person, so when I feel like people can see through to the crazy me, it creeps me out a little.
One of the hardest days after the surgery, either the second or third day, Christian was in my hospital room, and I just LOST IT. I don't even remember why, but it was surely some combination of self-pity, self-loathing, loneliness, frustration, drugs, and all-time high pain levels converging to some undignified moment where a grown woman finds herself sobbing inexplicably and inconsolably. The type of moment where you just need a hug, some human contact, someone to tell you it's going to be okay, even if it isn't. Christian did nothing; he stood there quietly, saying nothing, looking at me. And I could not. stop. crying. And since he was just standing there, staring at me, I finally said in between heaves, I'm sorry, because I didn't know what else to say and I guess I somehow wanted to give him permission to leave if he wasn't going to do anything but stare at me like I just sprouted a second head. And I was sorry, sorry for myself that I was having this total meltdown in front of some guy I barely know, sorry that I was clearly making him uncomfortable and wishing he could leave, sorry that I was letting someone else see me in one of my worst moments, which I usually hold inside my head where only I can experience them, and occasionally try to write about them. Finally, he very bluntly and unapologetically told me, Don't be sorry, while I continued to cry and hyperventilate like a three-year-old having a tantrum. Then he said, You just had your hip bone cut into pieces, and a bunch of muscles detatched and reattached. It's a lot to go through. You need to be easier on yourself.
You need to be easier on yourself.
What exactly does that even mean? Nonetheless, in that moment, I found some solace in it, the closest thing to a lifeline that I could grab onto; Christian's best offering. He's giving me permission to cry like a blathering idiot and not feel bad about it. Or he's giving me permission to feel sorry for myself, to fully accept I'm on this lonely journey that no one understands nor really cares to understand. Or he's giving me permission to hate myself, for being emotionally weak, for living in this ridiculously horrible deteriorating body. Or he's giving me permission to cry because this hurts so. damn. bad. He's giving me permission to show my worst, most pathetic side. Whatever the case, he and the nurse briefly colluded, and I ended up getting some combination of drugs that knocked my pain level down significantly, but more importantly, knocked me out cold. When I woke up, it was the middle of the night, and the lights were out, and I was calm, and Christian was long gone. He gave me permission to cry myself to sleep, and himself permission to leave after a long day of work, and go home. It's only fair. If I have permission to cry and yell and rant and lose it, then certainly the people who care for me have permission to not be able to help every person they see who is crying and yelling and ranting and losing it. We all get to go easier on ourselves.
I'm trying, I'm really trying. To be easier on not just myself, but also others.
Tuesday, August 1, 2017
Well I did it, I got screwed.
Isn't it kind funny how for, like, a year I've had nothing of real substance to say, yet I came here to wax philosophical and yada yada yada, and now... I have real shit to say, and a lot of it, and I can't bring myself to be here. At first it was because I didn't want to think about it. Like, really, I was filled with so much dread I couldn't think about it. I mean dudes, YOU ARE SAWING MY HIP INTO THREE PIECES! Who wants to think about that?! So... I didn't. I mean, weirdly enough, I did a bunch of prep work, I rearranged the house so it was handicap accessible, I bought all the shit that comes with these types of surgeries, but I did it without actually THINKING about the surgeries themselves. I went to Florida, I took my daughter on a special trip to New England and New York City, and I barely thought about it at all.
And then, July 10th came, and part of me was like, holy shit, I guess this is really happening, despite the fact that I have successfully avoided thinking about it for months now. But guess what? I went into the hospital, had the damn surgery, and it was still like it wasn't happening. I came home, spent a week pretending it was business as usual, minus the walking and all that, and then July 17th came, and I was like, holy shit, I guess this is really happening! And the morning of July 17th, the morning of the PAO, was when I pretty much started to fall apart. Like, first of all, my arrival time was 5:45 AM at the hospital, and it seemed like Monday morning chaos, which I get, but doesn't exactly lend itself to you having a great feeling about having your hip sawed into three pieces and screwed back together. Then the anesthesiologist came in and I swear he was high, or hung over, or something, and he was so weird it was kind of freaking me out. I thought it was just me, but after he left the room, my husband joked, 'Wow, I think he's had a few.' But no worries. This is the just the guy who is going to KEEP ME ALIVE during surgery! Totally not a big deal. LOL. Eventually my surgeon's PA came in and gave his usual (not very convincing) You're going to be fine, you have one of the best surgeons in the world pep talk. Then the anesthesiologist came back to put in an epidural (did you know those aren't just for child birth?) and by that time I was so worked up, I was crying or sobbing or doing something that made the anesthesiologist bark at the nurse to give me some Versed through my IV. Then he told me, 'It will make you happier. And if you're happier, the rest of us will be happier, too.'
And that's pretty much all I remember. And then I woke up. So I lived to tell about it, which is why I can joke about Dr. Crackhead. (He actually ended up being one of my favorites; more on that later, perhaps.)
The End.
Not really, of course. That's more like The Beginning. You know, the first 24 hours were really not bad. The epidural was still in, so I had pretty much zero pain. And I was fairly drugged up, so I slept a lot. On Day 2, I started to get uncomfortable, and the drugs started wearing off, and the catheter started to get uncomfortable, only I couldn't really move AT ALL, so I started to get antsy. AND, I got diarrhea and horrible stomach cramps, which is RIDICULOUS, because all those drugs they give you are supposed to give you constipation. And I did get horrible constipation with surgery #1, so I think I overdid my anti-constipation actions for surgery #2, and I'm not sure which one is worse, to be honest. Gross topic, I know, so let me just say that the diarrhea was HORRIBLE. Diarrhea and GI distress is not welcome under any circumstance, but diarrhea and GI distress when you are bedridden and any movement causes excruciating pain is probably among the most unpleasant and undignified experiences I've eeeeeeeever had. I'll leave it at that, because I'm not trying to make you throw up or anything.
I remember from my DIEP surgery that the second and third days afterward were the worst. The catheter comes out, so you have to get up and move around to at least go to the bathroom, yet you're also being weaned off your pain meds, so there's a lot of pain. It was about the same with this surgery. Days 2 and 3, I spent a lot of time crying and feeling sorry for myself. And there were times when my pain levels were just absolutely through the roof, times when I actually screamed and scared the nursing aides out of the room. But for the most part, I think I've blocked it out. As bad as I was expecting this surgery to be, those days were even worse than I expected. But, it got better pretty quickly, more quickly than I had imagined. My surgeon had told me that the first few weeks post-op were going to be very, very rough, so I was prepared for that. And don't get me wrong, it's been rough. But, once my pain was under control about 72 hours post-op, and I could start moving about a bit, it wasn't as bad as I was expecting. The extreme misery was pretty short-lived. By Friday, I had started the hospital's occupational/physical therapy program in preparation to go home, and I left on Saturday morning. It was good to get home. The hospital was in a city two hours away from my home, so I spent a lot of time alone during my stay, which was pretty hard at times.
And now... here I am. I think I'm still sort of in a weird state of denial, even though I'm fully in the thick of things. I just have no desire to try to recall or mull over the details, which isn't normal for me. I just feel so... detached? It is hard to say. I promise to write more later, now that I've broken out of my non-writing funk. It felt good to at least get that much down. Peace and love. :)
And then, July 10th came, and part of me was like, holy shit, I guess this is really happening, despite the fact that I have successfully avoided thinking about it for months now. But guess what? I went into the hospital, had the damn surgery, and it was still like it wasn't happening. I came home, spent a week pretending it was business as usual, minus the walking and all that, and then July 17th came, and I was like, holy shit, I guess this is really happening! And the morning of July 17th, the morning of the PAO, was when I pretty much started to fall apart. Like, first of all, my arrival time was 5:45 AM at the hospital, and it seemed like Monday morning chaos, which I get, but doesn't exactly lend itself to you having a great feeling about having your hip sawed into three pieces and screwed back together. Then the anesthesiologist came in and I swear he was high, or hung over, or something, and he was so weird it was kind of freaking me out. I thought it was just me, but after he left the room, my husband joked, 'Wow, I think he's had a few.' But no worries. This is the just the guy who is going to KEEP ME ALIVE during surgery! Totally not a big deal. LOL. Eventually my surgeon's PA came in and gave his usual (not very convincing) You're going to be fine, you have one of the best surgeons in the world pep talk. Then the anesthesiologist came back to put in an epidural (did you know those aren't just for child birth?) and by that time I was so worked up, I was crying or sobbing or doing something that made the anesthesiologist bark at the nurse to give me some Versed through my IV. Then he told me, 'It will make you happier. And if you're happier, the rest of us will be happier, too.'
And that's pretty much all I remember. And then I woke up. So I lived to tell about it, which is why I can joke about Dr. Crackhead. (He actually ended up being one of my favorites; more on that later, perhaps.)
The End.
Not really, of course. That's more like The Beginning. You know, the first 24 hours were really not bad. The epidural was still in, so I had pretty much zero pain. And I was fairly drugged up, so I slept a lot. On Day 2, I started to get uncomfortable, and the drugs started wearing off, and the catheter started to get uncomfortable, only I couldn't really move AT ALL, so I started to get antsy. AND, I got diarrhea and horrible stomach cramps, which is RIDICULOUS, because all those drugs they give you are supposed to give you constipation. And I did get horrible constipation with surgery #1, so I think I overdid my anti-constipation actions for surgery #2, and I'm not sure which one is worse, to be honest. Gross topic, I know, so let me just say that the diarrhea was HORRIBLE. Diarrhea and GI distress is not welcome under any circumstance, but diarrhea and GI distress when you are bedridden and any movement causes excruciating pain is probably among the most unpleasant and undignified experiences I've eeeeeeeever had. I'll leave it at that, because I'm not trying to make you throw up or anything.
I remember from my DIEP surgery that the second and third days afterward were the worst. The catheter comes out, so you have to get up and move around to at least go to the bathroom, yet you're also being weaned off your pain meds, so there's a lot of pain. It was about the same with this surgery. Days 2 and 3, I spent a lot of time crying and feeling sorry for myself. And there were times when my pain levels were just absolutely through the roof, times when I actually screamed and scared the nursing aides out of the room. But for the most part, I think I've blocked it out. As bad as I was expecting this surgery to be, those days were even worse than I expected. But, it got better pretty quickly, more quickly than I had imagined. My surgeon had told me that the first few weeks post-op were going to be very, very rough, so I was prepared for that. And don't get me wrong, it's been rough. But, once my pain was under control about 72 hours post-op, and I could start moving about a bit, it wasn't as bad as I was expecting. The extreme misery was pretty short-lived. By Friday, I had started the hospital's occupational/physical therapy program in preparation to go home, and I left on Saturday morning. It was good to get home. The hospital was in a city two hours away from my home, so I spent a lot of time alone during my stay, which was pretty hard at times.
And now... here I am. I think I'm still sort of in a weird state of denial, even though I'm fully in the thick of things. I just have no desire to try to recall or mull over the details, which isn't normal for me. I just feel so... detached? It is hard to say. I promise to write more later, now that I've broken out of my non-writing funk. It felt good to at least get that much down. Peace and love. :)
Wednesday, May 24, 2017
Everybody Has a Story
Have you ever wondered how you got where you are? Or, have you ever looked around you and wondered how the people around you got to where they are? Maybe because I come from a family of geographers, I'm hyper aware of my surroundings, and I've always had a keen interest in other people's stories. When I was a kid, we used to go on a lot of road trips, and I was always content to stare out the car window, watch the world go by, and make up stories about the people living in the houses we passed. I'd ask myself what it's like to live in a run-down farmhouse just a hundred feet off the interstate that thousands and thousands of cars whiz by per day. How did you get there? Have you lived there your whole life? And if so, how did your grandparents or your great grandparents get there? I used to love watching Steve Hartman's Everybody Has a Story on the CBS news, where he threw a dart at a map of the U.S., then traveled to the place where the dart landed, then randomly chose a person from the phone book (remember those?), then ran a story on that person. The stories were always interesting, and that's the whole point. Everybody Has a Story. (I just Googled this so I could be certain I wasn't making this up; for an example, see: http://www.cbsnews.com/news/everybody-has-a-story-flashbacks/).
I had my own Steve Hartman moment today.
I've been slowly acquiring the things that I'll need for my upcoming surgeries through a combination of Amazon, thrift stores, Craigslist, and begging, borrowing, and stealing. Okay, not really stealing. I had actually forgotten about Craigslist until a couple of weeks ago. When my kids were younger, I went through a phase where I bought pretty much everything off of Craigslist. Then when they got older, I sold all of said stuff on Craigslist, and I really haven't done much Craigslisting lately. But I had forgotten the awesomeness of Craigslist - that is, when you have the time to actually shop around and pick out the good deals from the bad deals ($80 for a used wheelchair when you can buy a new one for $65?!) and the flakes and the creepers from the normal people who just want to unload some junk and make a few bucks in the process.
One of the things I've been looking for is a stationary bike. Dr. Terminator said I'd need to ride a stationary bike between my arthroscopy and PAO, to get the fluid out of my hip joint. I don't have a stationary bike, and I don't belong to a gym, and I don't want to join one just for a week of stationary biking. I inquired on Facebook about borrowing one from a local friend, and apparently none of my friends have one, either - or maybe they do, and they just don't want to lend it to me. LOL. So I went onto Craigslist, where I found a bunch of fancy bikes for, like, $200+. I mean, maybe that's a good deal - I have no idea how much a stationary bike costs, but I do know that I do not want to pay hundreds of dollars for one. All I need is for my legs to be able to go round and round; I mean, hell, if worst comes to worst, I could just lie on my back and pretend bike. I remember doing a gig for an elementary school talent show where my friend and I stood on our heads and bicycled upside down to the tune of It's a Small World After All.
Among the ads for fancy pants bikes, I found one for $25 that was just perfect. $25! I immediately sent an e-mail, and to my surprise, I immediately heard back (rare in my experience). The bike was still available, I just needed to call the woman to get her address and set up a time to pick it up. I didn't respond right away because I hate calling people; for some weird reason, it has always stressed me out. Calling strangers is even worse. So I put it off. When I checked my e-mail a few hours later, bike woman had sent me an e-mail asking me if I still wanted the bike. She said she had someone else who wanted it, but you seemed like you really wanted [it] so I am giving you first chance at it. That was pretty sweet of her. I mean, really. In my Craigslist experience, I usually just try to dump the item off to the first person who can come by. And if you're looking for a stationary bike, you can't beat $25. In fact, I'm pretty sure I can sell it for quite a bit more once I'm done with it, at which point I'll probably feel a little bad. But the point is that I was pretty sure she was going to have a lot of people interested in the bike before long. So I replied to her e-mail promptly, and just in case she needed another reason to save the bike for me, I wrote that I was getting ready to have hip surgery, and I needed an inexpensive bike for my rehab. (Advice: play the woe is me card when you need to.) She replied, It will be a perfect bike for that. I used it to rehab from heart surgery. Heart surgery. So my first thought was, well, at least I'll be able to outrun her if she's a creeper. LOL. My second thought was more paranoid: maybe this is how she lures people into her house. She probably didn't even have heart surgery. She's probably a creepy old man trying to get an aspiring fitness guru into his house so he can tie her up and keep her in the basement. I mean, that's the problem with Craigslist, there's that you never know factor. And $25 for a bike seemed too good to be true.
I called her today and was relieved that she sounded like a normal person. And I was pretty sure I heard a kid in the background, which made me feel better. I feel like people who do shady things don't usually do them with kids around. But then, when she went to give me her address, she started to say, 'It's one... wait...' then she acted funny, like she couldn't remember it - her own address. Then she paused, as if she were asking someone what her address was, and eventually said, 'It's 3672 ABC Street.' That made me a little nervous. Woman lures unsuspecting woman into creepy man's house to be held as a sex slave. Then she added quickly, almost apologetically, 'Lot 197.' Ah, a trailer park. At least trailers don't have basements. And in a trailer park, the other trailers are very close by, so it seems like an unlikely place where you could hold people against their will. I felt pretty confident that my $25 stationary bike was legit.
Bike woman's house was in a part of town I'm not familiar with, so it took me longer to get there and find the park than I had planned on. Within the park, the homes did not seem to be arranged in a logical manner, so I drove around the park past at least 200 trailers before finding hers. I was actually just about to give up and call her, not so much because I didn't think I'd eventually find her place, but just so she would know I wasn't flaking out on her (because I HATE it when flaky Craigslist people flake out on me!), but it turns out I didn't have cell reception. When I did find her place, it was obvious, because there was a stationary bike sitting out in the front yard. Sweet relief. Ha.
I went up and knocked on the door, and other than feeling certain I wasn't going to be attacked and taken hostage, I'm not sure what I was expecting. As awful as it is, we make assumptions about people based on (very, very, very) limited information, and what I knew was that I was buying a bike from a woman who had had heart surgery who lives in trailer park and didn't seem to know her own address. So I was surprised when a totally normal looking youngish woman (probably a little younger than I am) answered the door. She had on a v-neck t-shirt that revealed a scar all the way up to her trachea. There was a boy next to her, probably around my daughter's age. The surprise was obviously mutual, although at first, bike woman just focused on explaining all the features of the bike to me. But eventually, she said somewhat awkwardly, 'Hip surgery... I was expecting someone... much older.' LOL. I gave her a nervous little smile and said, 'Heart surgery... I was also expecting someone much older' (and fatter, I thought to myself, to be completely honest). She smiled knowingly, with that look of yes, I get that a lot, and replied, 'I was born that way' (whatever 'that' is). I smiled and replied, 'I was born that way, too.' And in the few seconds that followed, we exchanged looks that were something along the lines of, Ah, yes, you must get this a lot. You don't look like someone who's had heart/hip surgery. Bike woman then expressed surprise that I was alone, and went back into the house to get her husband to come help me move the bike into my van. It turns out I could do it by myself just fine, but I guess someone who is getting ready to have hip surgery shouldn't be fit enough to lift a bike up into her van. ;-) Eventually, she wished me luck with my surgeries, and I drove off.
I'm not really sure why this had such a profound effect on me, but I think it gets back to what I wrote about in the beginning, that Everybody Has a Story. In the few exchanges I had with bike woman, I felt some sort of instant bond, because neither one of us was what the other was expecting, and yet we totally understood. I know I don't look like someone who has severe hip problems. And I know that bike woman knows she doesn't look like someone who has had heart surgery. Just a few words and a few facial expressions between us and I knew this, and she knew this. Then the Steve Hartman in me started to wonder...
How did you get here?
How did you come to live in the god-forsaken trailer park?
Did you just move here?
Is that why you didn't know your own address?
Was it because of your heart surgery?
We all have stories. Most of them are full of the unexpected. I want to know other people's stories. But I can't, because I am not Steve Hartman, and asking things would make me the creeper I hope to avoid. So instead, I can only wonder, and make up my own stories, and wonder if other people make up stories about me. Maybe bike woman did. Maybe that's why she wanted me to have the bike.
Regardless, thank you, bike woman, for saving the bike for me. I hope your heart is okay, in every way possible. XOXO.
I had my own Steve Hartman moment today.
I've been slowly acquiring the things that I'll need for my upcoming surgeries through a combination of Amazon, thrift stores, Craigslist, and begging, borrowing, and stealing. Okay, not really stealing. I had actually forgotten about Craigslist until a couple of weeks ago. When my kids were younger, I went through a phase where I bought pretty much everything off of Craigslist. Then when they got older, I sold all of said stuff on Craigslist, and I really haven't done much Craigslisting lately. But I had forgotten the awesomeness of Craigslist - that is, when you have the time to actually shop around and pick out the good deals from the bad deals ($80 for a used wheelchair when you can buy a new one for $65?!) and the flakes and the creepers from the normal people who just want to unload some junk and make a few bucks in the process.
One of the things I've been looking for is a stationary bike. Dr. Terminator said I'd need to ride a stationary bike between my arthroscopy and PAO, to get the fluid out of my hip joint. I don't have a stationary bike, and I don't belong to a gym, and I don't want to join one just for a week of stationary biking. I inquired on Facebook about borrowing one from a local friend, and apparently none of my friends have one, either - or maybe they do, and they just don't want to lend it to me. LOL. So I went onto Craigslist, where I found a bunch of fancy bikes for, like, $200+. I mean, maybe that's a good deal - I have no idea how much a stationary bike costs, but I do know that I do not want to pay hundreds of dollars for one. All I need is for my legs to be able to go round and round; I mean, hell, if worst comes to worst, I could just lie on my back and pretend bike. I remember doing a gig for an elementary school talent show where my friend and I stood on our heads and bicycled upside down to the tune of It's a Small World After All.
Among the ads for fancy pants bikes, I found one for $25 that was just perfect. $25! I immediately sent an e-mail, and to my surprise, I immediately heard back (rare in my experience). The bike was still available, I just needed to call the woman to get her address and set up a time to pick it up. I didn't respond right away because I hate calling people; for some weird reason, it has always stressed me out. Calling strangers is even worse. So I put it off. When I checked my e-mail a few hours later, bike woman had sent me an e-mail asking me if I still wanted the bike. She said she had someone else who wanted it, but you seemed like you really wanted [it] so I am giving you first chance at it. That was pretty sweet of her. I mean, really. In my Craigslist experience, I usually just try to dump the item off to the first person who can come by. And if you're looking for a stationary bike, you can't beat $25. In fact, I'm pretty sure I can sell it for quite a bit more once I'm done with it, at which point I'll probably feel a little bad. But the point is that I was pretty sure she was going to have a lot of people interested in the bike before long. So I replied to her e-mail promptly, and just in case she needed another reason to save the bike for me, I wrote that I was getting ready to have hip surgery, and I needed an inexpensive bike for my rehab. (Advice: play the woe is me card when you need to.) She replied, It will be a perfect bike for that. I used it to rehab from heart surgery. Heart surgery. So my first thought was, well, at least I'll be able to outrun her if she's a creeper. LOL. My second thought was more paranoid: maybe this is how she lures people into her house. She probably didn't even have heart surgery. She's probably a creepy old man trying to get an aspiring fitness guru into his house so he can tie her up and keep her in the basement. I mean, that's the problem with Craigslist, there's that you never know factor. And $25 for a bike seemed too good to be true.
I called her today and was relieved that she sounded like a normal person. And I was pretty sure I heard a kid in the background, which made me feel better. I feel like people who do shady things don't usually do them with kids around. But then, when she went to give me her address, she started to say, 'It's one... wait...' then she acted funny, like she couldn't remember it - her own address. Then she paused, as if she were asking someone what her address was, and eventually said, 'It's 3672 ABC Street.' That made me a little nervous. Woman lures unsuspecting woman into creepy man's house to be held as a sex slave. Then she added quickly, almost apologetically, 'Lot 197.' Ah, a trailer park. At least trailers don't have basements. And in a trailer park, the other trailers are very close by, so it seems like an unlikely place where you could hold people against their will. I felt pretty confident that my $25 stationary bike was legit.
Bike woman's house was in a part of town I'm not familiar with, so it took me longer to get there and find the park than I had planned on. Within the park, the homes did not seem to be arranged in a logical manner, so I drove around the park past at least 200 trailers before finding hers. I was actually just about to give up and call her, not so much because I didn't think I'd eventually find her place, but just so she would know I wasn't flaking out on her (because I HATE it when flaky Craigslist people flake out on me!), but it turns out I didn't have cell reception. When I did find her place, it was obvious, because there was a stationary bike sitting out in the front yard. Sweet relief. Ha.
I went up and knocked on the door, and other than feeling certain I wasn't going to be attacked and taken hostage, I'm not sure what I was expecting. As awful as it is, we make assumptions about people based on (very, very, very) limited information, and what I knew was that I was buying a bike from a woman who had had heart surgery who lives in trailer park and didn't seem to know her own address. So I was surprised when a totally normal looking youngish woman (probably a little younger than I am) answered the door. She had on a v-neck t-shirt that revealed a scar all the way up to her trachea. There was a boy next to her, probably around my daughter's age. The surprise was obviously mutual, although at first, bike woman just focused on explaining all the features of the bike to me. But eventually, she said somewhat awkwardly, 'Hip surgery... I was expecting someone... much older.' LOL. I gave her a nervous little smile and said, 'Heart surgery... I was also expecting someone much older' (and fatter, I thought to myself, to be completely honest). She smiled knowingly, with that look of yes, I get that a lot, and replied, 'I was born that way' (whatever 'that' is). I smiled and replied, 'I was born that way, too.' And in the few seconds that followed, we exchanged looks that were something along the lines of, Ah, yes, you must get this a lot. You don't look like someone who's had heart/hip surgery. Bike woman then expressed surprise that I was alone, and went back into the house to get her husband to come help me move the bike into my van. It turns out I could do it by myself just fine, but I guess someone who is getting ready to have hip surgery shouldn't be fit enough to lift a bike up into her van. ;-) Eventually, she wished me luck with my surgeries, and I drove off.
I'm not really sure why this had such a profound effect on me, but I think it gets back to what I wrote about in the beginning, that Everybody Has a Story. In the few exchanges I had with bike woman, I felt some sort of instant bond, because neither one of us was what the other was expecting, and yet we totally understood. I know I don't look like someone who has severe hip problems. And I know that bike woman knows she doesn't look like someone who has had heart surgery. Just a few words and a few facial expressions between us and I knew this, and she knew this. Then the Steve Hartman in me started to wonder...
How did you get here?
How did you come to live in the god-forsaken trailer park?
Did you just move here?
Is that why you didn't know your own address?
Was it because of your heart surgery?
We all have stories. Most of them are full of the unexpected. I want to know other people's stories. But I can't, because I am not Steve Hartman, and asking things would make me the creeper I hope to avoid. So instead, I can only wonder, and make up my own stories, and wonder if other people make up stories about me. Maybe bike woman did. Maybe that's why she wanted me to have the bike.
Regardless, thank you, bike woman, for saving the bike for me. I hope your heart is okay, in every way possible. XOXO.
Monday, May 22, 2017
I am too young for any of this.
You know, I think I was born to be a middle-aged woman. Middle age suits me well. I'm happier with myself in my 40s than I have been at any other time of my life. I've heard a similar story from other friends, so maybe it's just something to do with the age, and it's not about me. Then again, maybe it is me. Or maybe it's both. Either way, when I consider that my 40s have pretty much sucked in a lot of ways, it's shocking that I can say these have been good years. And maybe good isn't exactly the right word. It's more like... comfortable...?
I was kind of a weird kid. I was socially awkward and had a hard time making friends. With the exception of a few years, I never really had 'a group' I belonged to. I was never a rebellious teen; in fact, as a teen, I related much better to adults than to other teens. Yet, I was ridiculously naive into my mid-20s. I spent my late 20s trying to come up with something meaningful to do so that I wouldn't have to have kids yet, because, after all, what else does a married woman with no career do with herself, other than have kids? That was probably one of the hardest times of my life. At that point, most women are either fully entrenched in motherhood or fully entrenched in a career, and I had neither. In my early to mid 30s, I struggled to find that magical balance between being a decent mom and trying to work, as well as, OMG what do I want to do when I grow up? And then, in my late 30s, things got good. My daughter went off to kindergarten, and I had another baby - a baby boy. I'm not going to lie, I'm not well-suited for the baby phase. But it was easier the second time around, because despite having a baby, I was still the mother of a school-aged kid. The mother of a school-aged kid and, oh yeah, a baby. Being the mom of a school-aged kid works well for me; having a baby was secondary to that identity.
And now, both my kids are school-aged, and it's a double dose of awesome. I LOVE IT. I mean, aside from the cancer and the hips and all, I've LOVED my 40s. Some people say they were born to swim or born to teach or born to cook or born to be wild (haha), and I can say with surety that I was born to be in my 40s. When I was a kid, I longed to be older, and when I was in my 20s and 30s, I longed to go back to college, but in my 40s, I am happy to be the 42.5 years old that I am at this very moment - no younger, no older.
Weirdly enough, my cancer and my hips make me feel both older and younger than I actually am, but never my true age. In Cancerland, from a statistics point of view, I am considered Very Young to have/had cancer, but I'm also on the old side of Very Young. I've met folks online who were diagnosed with cancer in their 20s or early 30s, and from their point of view, I'm old. At least, old in the sense that I'm too old to understand the issues they are going through, like dating after a mastectomy or preserving your fertility. In the hip realm of things, for an average person, I'm Very Young to be having hip pain and hip surgery, yet considering the congenital condition I have and surgery I'm having, I'm actually Very Old. Most people who have PAO surgery are in their 20s.
I mean, whatever. The great thing about being in the middle is that you can be young when you want, old when you want, and in the middle when you want, and they're all true.
Anyway. I digress.
This past month, I've been focused on the practical side of everything more than the philosophical side. One of my major projects has been finding a pair of crutches that's suitable for long-term crutch use. For my last hip surgery, which seems like eons ago, I used a combination of underarm thrift-store crutches with pads from Crutcheze (highly recommended), and forearm crutches that my dad has from a time when he broke his ankle in Europe, where forearm crutches are the norm. (In the U.S., usually only people who are long-term crutch users use forearm crutches.) But considering how. freaking. long. I am going to be on crutches in the next year or so, that just didn't seem like it was going to cut it. So I Googled 'most comfortable crutches' and came up with two different candidates - Millenial crutches, and Mobilegs.
There are a few places in town that sell Millenial crutches, so I went to test them out. At the same time, I also inquired about wheelchair rental prices, which is another thing that has been recommended to me. (Suck up your pride and rent a wheelchair.) I explained to the woman who was helping me that I was going to be on crutches for a very long time, so I needed a very comfortable pair. (BTW, the Millenial crutches did NOT cut it for me.) I think between that and the wheelchair rental inquiry, she was very curious, but politely didn't ask too much. And it's not like I'm secretive or anything, but I tend to not share too much unless people ask too much. Eventually we did discuss the fact that I'd be having hip surgery, but left it at that. When I told her the Millenial crutches were very uncomfortable and I couldn't believe they got such great reviews, she asked me about traditional crutches. I told her I had those already. Then she asked if I would be interested in forearm crutches. I told her I had those already, too. Then she asked, 'What about... a walker?' OMG, LOL. I actually already have a walker, too. I needed one to save my back after my DIEP reconstruction, so my husband picked one up at the thrift store. But I looked her straight in the eye, and was like, 'I am too young to go out in public with a walker.' Yes, around the house is okay, but in public, no. Just no.
She looked at me very sympathetically and said, 'I understand.' Then added, 'You are too young for any of this.'
My immediate reaction was, 'Yeah lady, and you don't know the half of it,' but then I thought to myself, 'She's right. I'm too young for this.' Granted, I look younger than I am, but I suspect if I had told her that I'm actually 42 years old, she wouldn't have changed her stance. In so many ways, I AM too young for this. But... the beauty of middle age is that I've fully accepted that things are what they are. In reality, there's no such thing as too old or too young or too anything. You just are what you are, and your life is what it is. Eventually you have to accept it - whether it is kicking and screaming the whole way, or wholeheartedly embracing it. I'm working on the latter.
I was kind of a weird kid. I was socially awkward and had a hard time making friends. With the exception of a few years, I never really had 'a group' I belonged to. I was never a rebellious teen; in fact, as a teen, I related much better to adults than to other teens. Yet, I was ridiculously naive into my mid-20s. I spent my late 20s trying to come up with something meaningful to do so that I wouldn't have to have kids yet, because, after all, what else does a married woman with no career do with herself, other than have kids? That was probably one of the hardest times of my life. At that point, most women are either fully entrenched in motherhood or fully entrenched in a career, and I had neither. In my early to mid 30s, I struggled to find that magical balance between being a decent mom and trying to work, as well as, OMG what do I want to do when I grow up? And then, in my late 30s, things got good. My daughter went off to kindergarten, and I had another baby - a baby boy. I'm not going to lie, I'm not well-suited for the baby phase. But it was easier the second time around, because despite having a baby, I was still the mother of a school-aged kid. The mother of a school-aged kid and, oh yeah, a baby. Being the mom of a school-aged kid works well for me; having a baby was secondary to that identity.
And now, both my kids are school-aged, and it's a double dose of awesome. I LOVE IT. I mean, aside from the cancer and the hips and all, I've LOVED my 40s. Some people say they were born to swim or born to teach or born to cook or born to be wild (haha), and I can say with surety that I was born to be in my 40s. When I was a kid, I longed to be older, and when I was in my 20s and 30s, I longed to go back to college, but in my 40s, I am happy to be the 42.5 years old that I am at this very moment - no younger, no older.
Weirdly enough, my cancer and my hips make me feel both older and younger than I actually am, but never my true age. In Cancerland, from a statistics point of view, I am considered Very Young to have/had cancer, but I'm also on the old side of Very Young. I've met folks online who were diagnosed with cancer in their 20s or early 30s, and from their point of view, I'm old. At least, old in the sense that I'm too old to understand the issues they are going through, like dating after a mastectomy or preserving your fertility. In the hip realm of things, for an average person, I'm Very Young to be having hip pain and hip surgery, yet considering the congenital condition I have and surgery I'm having, I'm actually Very Old. Most people who have PAO surgery are in their 20s.
I mean, whatever. The great thing about being in the middle is that you can be young when you want, old when you want, and in the middle when you want, and they're all true.
Anyway. I digress.
This past month, I've been focused on the practical side of everything more than the philosophical side. One of my major projects has been finding a pair of crutches that's suitable for long-term crutch use. For my last hip surgery, which seems like eons ago, I used a combination of underarm thrift-store crutches with pads from Crutcheze (highly recommended), and forearm crutches that my dad has from a time when he broke his ankle in Europe, where forearm crutches are the norm. (In the U.S., usually only people who are long-term crutch users use forearm crutches.) But considering how. freaking. long. I am going to be on crutches in the next year or so, that just didn't seem like it was going to cut it. So I Googled 'most comfortable crutches' and came up with two different candidates - Millenial crutches, and Mobilegs.
There are a few places in town that sell Millenial crutches, so I went to test them out. At the same time, I also inquired about wheelchair rental prices, which is another thing that has been recommended to me. (Suck up your pride and rent a wheelchair.) I explained to the woman who was helping me that I was going to be on crutches for a very long time, so I needed a very comfortable pair. (BTW, the Millenial crutches did NOT cut it for me.) I think between that and the wheelchair rental inquiry, she was very curious, but politely didn't ask too much. And it's not like I'm secretive or anything, but I tend to not share too much unless people ask too much. Eventually we did discuss the fact that I'd be having hip surgery, but left it at that. When I told her the Millenial crutches were very uncomfortable and I couldn't believe they got such great reviews, she asked me about traditional crutches. I told her I had those already. Then she asked if I would be interested in forearm crutches. I told her I had those already, too. Then she asked, 'What about... a walker?' OMG, LOL. I actually already have a walker, too. I needed one to save my back after my DIEP reconstruction, so my husband picked one up at the thrift store. But I looked her straight in the eye, and was like, 'I am too young to go out in public with a walker.' Yes, around the house is okay, but in public, no. Just no.
She looked at me very sympathetically and said, 'I understand.' Then added, 'You are too young for any of this.'
My immediate reaction was, 'Yeah lady, and you don't know the half of it,' but then I thought to myself, 'She's right. I'm too young for this.' Granted, I look younger than I am, but I suspect if I had told her that I'm actually 42 years old, she wouldn't have changed her stance. In so many ways, I AM too young for this. But... the beauty of middle age is that I've fully accepted that things are what they are. In reality, there's no such thing as too old or too young or too anything. You just are what you are, and your life is what it is. Eventually you have to accept it - whether it is kicking and screaming the whole way, or wholeheartedly embracing it. I'm working on the latter.
Sunday, May 7, 2017
I want to be like the one-legged guy playing innertube water polo.
Over two years ago, I went to an orthopedist for a second opinion about my hips, and he told me I needed this horrendous surgery, in which they cut your hip bone into three pieces and then screw the pieces back together in a better configuration, on both hips. I stared at him for a while with my mouth agape, but ultimately, I didn't take the news that hard because I was sort of like, Oh yeah, right, hahahahaha, that is sooooo never happening! Yet, a little over two years later, what do you know? It is actually happening.
It is happening in pieces, starting on July 10th and July 17th. I actually have dates set now, so it's real. A few months ago, I went in for a second opinion on the second opinion, and that doctor agreed 100% with the doctor that I blew off, at which point I finally accepted that something major needed to happen. But it still didn't seem real. I used to listen to the Dr. Laura show (don't judge me, lol), and whenever anyone claimed to be 'engaged,' the first thing she would ask is, 'Do you have a ring and a date?' Otherwise, she didn't consider it to be a real engagement. There's some truth there. Although I don't have a ring, I have crutches and a shower chair, and having a date makes it real, for sure.
It would be impossible to describe the full range of emotions that I've gone through that bring me to where I am today, and I realize it sounds melodramatic to be waxing philosophical about a bunch of freaking hip surgeries (they are HIPS, get over it!), so I won't even try. I'll just say that I'm thankful to not be on tamoxifen any more, because I'm pretty sure that all of these emotional ups and downs over the past couple of months would have pushed me over some edge, whether literal or metaphorical.
On April 15th, I went up to University Hospital to have the CT scan and fancy MRIs (dGEMRIC) that Dr. Terminator wanted. They had to be done at University Hospital because Dr. Terminator is picky about how they're done and who does them and who reads them and yada yada. So this meant I spent a gorgeous Saturday either driving to or from University Hospital, or in some tiny, hot tube. (For the record, it takes over two hours to image both hips, and by the end it's really freaking hot, especially when you have a blanket over you because it starts off really freaking cold. Fun times, fun times.) Although, I have to admit, it wasn't as bad as I was expecting. In the past, when I've had imaging of my hips (read here and here), they've injected the dye into my hip joint, which is quite painful, so I was nervous about having both hips done at once. However, this time, they injected the dye into my arm, then had me walk for 30 minutes to move the dye into my hip joints. So, yay, I got to avoid the painful injections and get some exercise. Does it get any better that this? LOL.
The scans were pretty uneventful, but a few days later, I was able to read the results on the patient portal, and they basically read like some kind of hip horror story. Just reading the report, and all the things that are wrong with my hips and the surrounding tissues, made my hips hurt worse. I love that the university system is really into sharing all sorts of information with the patients, but it should come with a warning like, DO NOT READ IF YOU HAVE HYPOCHONDRIAC TENDENCIES. Although, to be fair to myself, I guess I'm not REALLY a hypochondriac, because every time I've thought there's something wrong with me, it turns out that there really is. I'm not sure if there's an appropriate term for this.
Anyhoo, I was pretty sure after reading the report that my right hip was too far gone to do the 'cutting surgery' (as Dr. Terminator's fellow called it), and that I'd need to proceed straight to a hip replacement. That wouldn't have been so bad, except that I'd spent all this time psyching myself up to have the PAO, and trying to change mindsets was difficult. In the meantime, I joined various support groups online, because like I alluded to before, most people don't get just how traumatic this hip shit really is. (Seriously, it really is. I mean, people don't really get cancer unless they've had it, but at least they get that it's traumatic.) In one forum, I got mixed opinions about PAO versus hip replacement, with many people telling me I'd be crazy to do PAO at age 42, that my surgeon must not know what he's doing, and various other remarks that made me question pretty much everything. So I turned to a Facebook group of people who live in my state who have had the PAO, and in particular, who had the PAO with Dr. Terminator. No one had anything but great things to say about him, and some even went so far as to say that he is brilliant, and that they would trust him with their life. One of the women in the group, who did not have Dr. Terminator as her doctor, joked that this Facebook group was really a 'Dr. Terminator Fan Club.' So after that, I decided that whatever Dr. Terminator recommended at my appointment with him was what I would do. I am all for educating yourself and advocating for yourself and being aware of all of your options, but at a certain point, you have to trust that your doctor knows better than you do. The reason I sought out Dr. Terminator in the first place is because I wanted a doctor with a stellar reputation whose opinion I could trust. As far as I can tell, the PAO vs. hip replacement debate is something you can argue about until you're blue in the face, much like the 'should I do chemo or not?' debate I experienced with cancer. At a certain point, you just need to make a decision and go with it.
I saw Dr. Terminator on April 27th, and I was pretty nervous about what he might say, either way. I asked my husband to go with me to help with the questions and decisions and all that. Dr. Terminator was a bit friendlier this time, and told me that he felt he could save my hip, and that it was worth a try, in his opinion. At that point, I was really glad I vetted him, because otherwise I wouldn't have known what to think. But when several people have told you that the man is brilliant and they would trust him with their life, you feel okay putting your faith into what he's telling you. He did say that he could not promise that I wouldn't need a hip replacement down the road, but the decision I had to make was with regards to the immediate future. As he said, 'You've exhausted all conservative options. There are only two options ahead of you.' He said that a hip replacement, for me, would likely be a more complex procedure than average because of my dysplasia. So, if I did need a hip replacement eventually, even after having the PAO, the consolation prize would be that I would have a much easier time with the hip replacement. So... I decided to just go with it and not look back.
I will write more details about the appointment and the specific plan later, but for now, I want to leave with this thought. Mentally, I'm in a pretty good place right now. Obviously I'm not happy this is happening, but I'm pretty much over the woe is me part of it. (Keep in mind, I did say pretty much. I cannot guarantee that there won't be whining in the future. In fact, I can pretty much guarantee that there will be. I apologize in advance.) When I told my friends I had cancer, so many of them were like YOU'VE GOT THIS! YOU'RE GOING TO KICK CANCER'S ASS! YEAH BABY! YOU GO GIRL! And that just didn't work for me. I know they meant well, but... like, how do you psyche up to try to get rid of some microscopic, rogue cells floating around in your body? It's not like you stand in front of the mirror flexing your muscles and saying, YEAH BABY, I'VE GOT THIS! HUZZAH!
These hips surgeries, on the other hand, lend themselves better to the YOU'RE GOING TO KICK SOME ASS! attitude. In this case, I'd be okay with someone telling me YOU GO GIRL! In fact, in trying to mentally gear up for this, I've had a little bit of the I'VE GOT THIS! moxie running through my head. Because I'm going to be on crutches for so. stinking. long, I can't just put my life on hold until I can walk again. I need to be able to function on crutches. I need to be strong - as in literally, physically strong (and probably emotionally, too, but we know that's not happening). So I'm getting into the best shape possible, I'm lifting weights, I'm doing everything I can ahead of time to make the rehab period easier. And because I am a goal-oriented person, it helps to have something tangible to work toward. It's fun, almost. You know, until I actually have to have the surgeries.
The other day, I was leaving the pool after coaching diving. As I was leaving, some college kids came in to play innertube water polo. One of them had one leg and was on crutches. He was obviously a long time crutch user, as he was very adept and fast on crutches, and even the slippery wetness of the pool deck - something I worry about a lot with crutches - didn't slow him down. He crutched right over to the far side of the pool deck, dropped his crutches, hopped around on one leg while passing the ball back and forth with some of his teammates, then eventually sat down and got into his innertube, at which point he looked just like everyone else. I probably wouldn't have even noticed the crutches except for the fact that he only had one leg.
And I thought to myself YEAH BABY! I'm going kick some ass. Just that guy. HE'S GOT THIS! And so do I.
It is happening in pieces, starting on July 10th and July 17th. I actually have dates set now, so it's real. A few months ago, I went in for a second opinion on the second opinion, and that doctor agreed 100% with the doctor that I blew off, at which point I finally accepted that something major needed to happen. But it still didn't seem real. I used to listen to the Dr. Laura show (don't judge me, lol), and whenever anyone claimed to be 'engaged,' the first thing she would ask is, 'Do you have a ring and a date?' Otherwise, she didn't consider it to be a real engagement. There's some truth there. Although I don't have a ring, I have crutches and a shower chair, and having a date makes it real, for sure.
It would be impossible to describe the full range of emotions that I've gone through that bring me to where I am today, and I realize it sounds melodramatic to be waxing philosophical about a bunch of freaking hip surgeries (they are HIPS, get over it!), so I won't even try. I'll just say that I'm thankful to not be on tamoxifen any more, because I'm pretty sure that all of these emotional ups and downs over the past couple of months would have pushed me over some edge, whether literal or metaphorical.
On April 15th, I went up to University Hospital to have the CT scan and fancy MRIs (dGEMRIC) that Dr. Terminator wanted. They had to be done at University Hospital because Dr. Terminator is picky about how they're done and who does them and who reads them and yada yada. So this meant I spent a gorgeous Saturday either driving to or from University Hospital, or in some tiny, hot tube. (For the record, it takes over two hours to image both hips, and by the end it's really freaking hot, especially when you have a blanket over you because it starts off really freaking cold. Fun times, fun times.) Although, I have to admit, it wasn't as bad as I was expecting. In the past, when I've had imaging of my hips (read here and here), they've injected the dye into my hip joint, which is quite painful, so I was nervous about having both hips done at once. However, this time, they injected the dye into my arm, then had me walk for 30 minutes to move the dye into my hip joints. So, yay, I got to avoid the painful injections and get some exercise. Does it get any better that this? LOL.
The scans were pretty uneventful, but a few days later, I was able to read the results on the patient portal, and they basically read like some kind of hip horror story. Just reading the report, and all the things that are wrong with my hips and the surrounding tissues, made my hips hurt worse. I love that the university system is really into sharing all sorts of information with the patients, but it should come with a warning like, DO NOT READ IF YOU HAVE HYPOCHONDRIAC TENDENCIES. Although, to be fair to myself, I guess I'm not REALLY a hypochondriac, because every time I've thought there's something wrong with me, it turns out that there really is. I'm not sure if there's an appropriate term for this.
Anyhoo, I was pretty sure after reading the report that my right hip was too far gone to do the 'cutting surgery' (as Dr. Terminator's fellow called it), and that I'd need to proceed straight to a hip replacement. That wouldn't have been so bad, except that I'd spent all this time psyching myself up to have the PAO, and trying to change mindsets was difficult. In the meantime, I joined various support groups online, because like I alluded to before, most people don't get just how traumatic this hip shit really is. (Seriously, it really is. I mean, people don't really get cancer unless they've had it, but at least they get that it's traumatic.) In one forum, I got mixed opinions about PAO versus hip replacement, with many people telling me I'd be crazy to do PAO at age 42, that my surgeon must not know what he's doing, and various other remarks that made me question pretty much everything. So I turned to a Facebook group of people who live in my state who have had the PAO, and in particular, who had the PAO with Dr. Terminator. No one had anything but great things to say about him, and some even went so far as to say that he is brilliant, and that they would trust him with their life. One of the women in the group, who did not have Dr. Terminator as her doctor, joked that this Facebook group was really a 'Dr. Terminator Fan Club.' So after that, I decided that whatever Dr. Terminator recommended at my appointment with him was what I would do. I am all for educating yourself and advocating for yourself and being aware of all of your options, but at a certain point, you have to trust that your doctor knows better than you do. The reason I sought out Dr. Terminator in the first place is because I wanted a doctor with a stellar reputation whose opinion I could trust. As far as I can tell, the PAO vs. hip replacement debate is something you can argue about until you're blue in the face, much like the 'should I do chemo or not?' debate I experienced with cancer. At a certain point, you just need to make a decision and go with it.
I saw Dr. Terminator on April 27th, and I was pretty nervous about what he might say, either way. I asked my husband to go with me to help with the questions and decisions and all that. Dr. Terminator was a bit friendlier this time, and told me that he felt he could save my hip, and that it was worth a try, in his opinion. At that point, I was really glad I vetted him, because otherwise I wouldn't have known what to think. But when several people have told you that the man is brilliant and they would trust him with their life, you feel okay putting your faith into what he's telling you. He did say that he could not promise that I wouldn't need a hip replacement down the road, but the decision I had to make was with regards to the immediate future. As he said, 'You've exhausted all conservative options. There are only two options ahead of you.' He said that a hip replacement, for me, would likely be a more complex procedure than average because of my dysplasia. So, if I did need a hip replacement eventually, even after having the PAO, the consolation prize would be that I would have a much easier time with the hip replacement. So... I decided to just go with it and not look back.
I will write more details about the appointment and the specific plan later, but for now, I want to leave with this thought. Mentally, I'm in a pretty good place right now. Obviously I'm not happy this is happening, but I'm pretty much over the woe is me part of it. (Keep in mind, I did say pretty much. I cannot guarantee that there won't be whining in the future. In fact, I can pretty much guarantee that there will be. I apologize in advance.) When I told my friends I had cancer, so many of them were like YOU'VE GOT THIS! YOU'RE GOING TO KICK CANCER'S ASS! YEAH BABY! YOU GO GIRL! And that just didn't work for me. I know they meant well, but... like, how do you psyche up to try to get rid of some microscopic, rogue cells floating around in your body? It's not like you stand in front of the mirror flexing your muscles and saying, YEAH BABY, I'VE GOT THIS! HUZZAH!
These hips surgeries, on the other hand, lend themselves better to the YOU'RE GOING TO KICK SOME ASS! attitude. In this case, I'd be okay with someone telling me YOU GO GIRL! In fact, in trying to mentally gear up for this, I've had a little bit of the I'VE GOT THIS! moxie running through my head. Because I'm going to be on crutches for so. stinking. long, I can't just put my life on hold until I can walk again. I need to be able to function on crutches. I need to be strong - as in literally, physically strong (and probably emotionally, too, but we know that's not happening). So I'm getting into the best shape possible, I'm lifting weights, I'm doing everything I can ahead of time to make the rehab period easier. And because I am a goal-oriented person, it helps to have something tangible to work toward. It's fun, almost. You know, until I actually have to have the surgeries.
The other day, I was leaving the pool after coaching diving. As I was leaving, some college kids came in to play innertube water polo. One of them had one leg and was on crutches. He was obviously a long time crutch user, as he was very adept and fast on crutches, and even the slippery wetness of the pool deck - something I worry about a lot with crutches - didn't slow him down. He crutched right over to the far side of the pool deck, dropped his crutches, hopped around on one leg while passing the ball back and forth with some of his teammates, then eventually sat down and got into his innertube, at which point he looked just like everyone else. I probably wouldn't have even noticed the crutches except for the fact that he only had one leg.
And I thought to myself YEAH BABY! I'm going kick some ass. Just that guy. HE'S GOT THIS! And so do I.
Friday, March 17, 2017
Goodnight Tamoxifen
I feel like my life is one big ping pong match in which I go back and forth between cancer and hips and cancer and hips and cancer and hips. It is one big story of damage control.
I've been sick all week with some nasty crud that keeps me awake all night coughing and has stolen my voice. As far as nasty crud goes, I've had worse, but the sleep deprivation is always what gets me. Plus, for someone who makes a living giving lectures, it's pretty inconvenient to not be able to talk. I had to cancel class on Tuesday because I literally had no voice.
Ever since my appointment last Thursday, I've gone through various stages of Kübler-Ross grieving, and shockingly, I'm in a pretty good place right now. I'll have to write about it later. Nevertheless, I'msort of totally freaking out about next fall, and my job. There are some complexities of my job that I won't go into here, but I feel like I definitely need to work full-time next fall. It's not just because I took last fall off and the fall before that half-time - though that's huge - but there's other stuff as well. Lots of moving parts. And because of the nature of my job - teaching at a university - I can't really just take time off until I'm ready to come back. We don't have substitutes like in K-12, and trying to come back mid-semester is pretty tough. Obviously unexpected things happen, in which case you deal with them, but if you KNOW there's something that's very likely to happen, like having your hips sawed apart and screwed back together, that will very likely interfere with your job at a predictable time and in a predictable way, it's the responsible thing to do to make arrangements ahead of time.
I know my Chair is probably burnt out from dealing with my crises and from generally being overworked and underpaid, so I've been hesitant to say anything - plus, his wife is expecting a baby any day now, and holy crap, I forgot to ask how she was doing and I pray she did not actually have the baby yet because that would make me the hugest, self-centered jerk ever! However, stress got the best of me today, and because I'm super Type A, I just had to tell him what was up, because one of my 'solutions' for the fall is to make a change to one of my classes that needs to happen within the next few weeks, before students start registering. Today seemed like just as good a day as any to burden him with yet another of my problems. Now that I think about it, it's probably better now than after his baby is born (which hopefully it was not). I think I hit a new low, going into his office and squeaking about my hip problems in my barely-above-a-whisper voice. Like, gee, am I not the most pathetic employee EVER? I know, I know, I didn't ask for any of this to happen, but even my own mind is boggled over the ridiculous sequence of health catastrophes I've had over the past few years, and I have to admit that if I were an outsider looking in, it would come across as attention-seeking behavior. I mean Jesus Christ. Fortunately, my Chair is an outstanding human being, and I feel better now, because he held my hand (not literally) and told me it's going to be okay. Also, there has been a lot of crap coming down on me this year, and whereas I'd normally get snarky and combative about a lot of it, I've been extra chill, just because my department was sooooo supportive of me with the cancer ordeal, I feel like I need to grin and bear it and play nice. Now I'm suuuuuper glad I haven't been a jerk, even when I've wanted to be (and if you know me, you know it takes a lot of self-restraint for me to not be a jerk).
And oh my gosh, as you may have guessed by the title of this, that's not even what I came here to write about. On the other side of the ping-pong net, there's CANCER. A while ago, I wrote about how I was in what I suspected to be a tamoxifen-induced stupor. I re-read those words I wrote, and I can't believe those words came out of me. That wasn't me. I went to see my primary care doctor about this, and he really helped me out of the hole. I wish I had written about it then, because I don't really remember the details, although I do remember him telling me that if he thought I was going to harm myself, he was obligated to have me locked up for three days. I told him that even though I was hoping to die, I had no plans for how it would happen, and apparently that was okay. As long as there's no plan.
I took an anti-depressant for a little bit, but it made me feel horrible, so I stopped. I stopped everything - the anti-depressant, the tamoxifen, the baby aspirin. It was my own decision. My PCP did not really approve, and told me I needed to talk to Dr. M about it ASAP, although I do think he could see firsthand at my follow-up appointments that I was sooo much better, so he didn't push it too much. I think it was mostly due diligence. I also, somewhere in all of this, had an appointment with Dr. T, who, as usual, expressed concern over my weight. I briefly explained to him that I really felt like the tamoxifen had done a number on my appetite, but that I wasn't currently taking it, and I had actually gained weight since I stopped (which basically makes me the opposite of pretty much every other woman I know who has taken tamoxifen, but whatever). He obviously didn't approve, either, and urged me to see my oncologist about alternatives. Unfortunately, I know what the alternatives are, and they don't sound fun, either. And I just wanted to enjoy being myself for a while.
But stress of my recklessness eventually got the best of me, and so I made an appointment to see Dr. M. That appointment was today. I haven't taken the tamoxifen in about three months, so I think I have a pretty clear picture of the effects it was having on me. First and foremost, the severe depression was definitely the tamoxifen. I think it snuck up on me, though. I'm not a super happy person naturally. I don't handle stress well at all, and while I think I have a deep appreciation for life that might surprise people who don't read my blog, my default mood is more melancholy than happy. A low-level disgust with life in general is normal for me, lol, BUT, I've never experienced anything like I did in December, and it was quite honestly downright scary. Second, I've mentioned a couple of times that I felt like all those surgeries I had made me stupid, and I really wasn't kidding. Since cancer, I have not felt as mentally sharp as I used to be. Many people who have chemo talk about 'chemo brain,' which is a real thing. I didn't do chemo, so for a while I just thought I was having empathetic or guilt-induced chemo brain, or the exhaustion from all the surgeries and trauma of cancer in general zapped some brain cells, or at least some dendrites. The thing is it never got better, even a year later. I still felt foggy. When you're standing in a large lecture hall, lecturing to 85 people, and not only can you not think of words that you could once spout off in your sleep, but you also can't even remember what you were talking about to think of an alternative explanation, it becomes pretty clear you aren't just making it up. It turns out a lot of that was the tamoxifen. Not all of it, because these lapses still happen occasionally, BUT, I am so. much. better. And finally, there are the little things - nausea, loss of appetite, cramps, fatigue, hot flashes.
I reflected on all these effects before my appointment and decided that I could put up with the little things, and probably even the tamoxifen brain, but that I was so terrified of the depression that I was pretty sure I didn't ever want to take the tamoxifen again. Then again, there was a little voice inside of me that said maybe it was doable if I vowed to be extra vigilant about looking for signs that I was heading downhill. However, I was pretty worried about this, especially considering that with four impending surgeries and over a year of intense rehab ahead of me, I really need to be in as positive a state of mind as I can be.
These were the things on my mind as I headed off to my 4:30 appointment with Dr. M. I started off telling him in some detail of my slow decline October through December, ending with me crying in my PCP's office and on the brink of being locked up for three days. I told him I had stopped taking the tamoxifen, that I hadn't taken it in three months, and that I felt great. I basically told him most of what I wrote above. He listened very carefully, then said definitively that he was completely okay with me not taking the tamoxifen. I mean, obviously it's my choice and no one can make me take it, but he didn't say it in a you are being stupid or well it's up to you - I don't care if you die! type of way. He said it very thoughtfully.
Then he said he wanted to make a few things clear. I should not see tamoxifen as a 'life-saving' drug. The original cancer is gone. The mastectomy was what was 'life-saving.' Tamoxifen is simply a drug to help reduce the chances of a recurrence. Since I've already had cancer, and I still have breast tissue, I'm at a high risk for getting more cancer. But, a recurrence doesn't necessarily mean I will die - 'It just means that in a few years you might be sitting in my office again, going through the same thing you went through before, facing the same choices.' Weirdly enough, that statement was both alarming and comforting at the same time. Of course I don't want to deal with this again. At the same time, how bad was it? I mean, I'm here, after all. And there was a time in December when I really didn't think I would make it, nor did I want to. Dr. M did mention that there was a chance that the cancer would come back as metastatic cancer, but that could happen even I continue to take the tamoxifen. The cancer may come back, in any form, regardless. He concluded, 'When I hear that the tamoxifen has turned a perfectly good microbiology professor [sic] into a vegetable, I vote to stop it.'
He said the chances of a recurrence are approximately 20%, and the tamoxifen reduces that to around 10%. Which... wow, sounds like a lot. 20% sounds so high. Then again, so does an 80% chance of it NOT coming back. Of course, I'm a glass half empty type, so this is a tough one. Then he pulled up a web site called Adjuvant Online, which is a tool that supposedly more accurately predicts your chance of survival five and ten years out based on your age and cancer stats. We plugged in my stats, and he got a kick out of the fact that I had them memorized. He was looking around trying to find my Ki-67 value, and I informed him it was 11. LOL. According to Adjuvant Online, I have something like an 85% chance of being alive in five years and a 77% chance of being alive in ten years. (It's sort of a morbid tool, now that I think about it.) I would normally remember the exact numbers, but I was sort of fixated on how low they seemed! I mean, yikes, 77%, that's barely a C+ in my book! Then he said the problem with the tool is that the death rate didn't just include people who died from cancer; it included people who died from anything, including plane crashes, whatever. That made me feel a little better, but still. I asked him if 'survival' meant a cancer-free survival, or that you were just alive five and ten years later. He said that it just meant you were alive. So, you could have a recurrence, but so long as it didn't kill you, you'd still be in the 85%, or 77% (which would be possible with a recurrence of the same type of cancer in, say, my right breast, but unlikely if I had metastatic cancer). Somehow his conclusion from this was that I wasn't receiving a huge benefit from the tamoxifen, as my chances of being alive five and ten years from now didn't change a whole lot with hormone therapy, and based on what I had told him I should stop. This was a huge relief considering I had basically already decided I wasn't going to take it anymore anyway, but somehow I couldn't get that C+ out of my head. Yes, that's ALL DEATHS, but how many people actually die in, like, hiking accidents or random other tragic events?!
I was kind of surprised he didn't suggest an alternative, like shutting down my ovaries and trying a post-menopausal drug. I was pretty sure he would, and had all my excuses lined up. Like, I'm pretty sure I can't handle going through that and multiple hip surgeries at the same time. But he didn't even bring it up. I was relieved, but also a little disconcerted considering two oncologists suggested this instead of tamoxifen, simply because of my age. Ironically, I think I went with Dr. M because I liked his less aggressive style, and now I'm worried he isn't being aggressive enough. What can I say, I guess I am hard to please. In the end, we agreed I would continue to see him for breast checks every year, but otherwise we'll each go our merry ways. Then I asked him for something for this damn cough - something with a narcotic in it to help me sleep.
All in all, I felt like it was a good appointment, and overall a good day. I am willing to take my chances. I'm a little nervous, but let's be honest, I am going to be nervous no matter what. Lately, though, I've been feeling pretty optimistic about life in general, and I think that's probably because I haven't been on tamoxifen. Oh the irony. As I told my Chair, the fact that I'm considering the hip surgeries must mean I'm feeling optimistic that I'll live long enough to reap the benefits. Take the silver linings where you can.
So, goodnight tamoxifen, and goodnight to all. I'm going to go enjoy a big swig of my cough medicine and hope for some ZZZZZZs.
I've been sick all week with some nasty crud that keeps me awake all night coughing and has stolen my voice. As far as nasty crud goes, I've had worse, but the sleep deprivation is always what gets me. Plus, for someone who makes a living giving lectures, it's pretty inconvenient to not be able to talk. I had to cancel class on Tuesday because I literally had no voice.
Ever since my appointment last Thursday, I've gone through various stages of Kübler-Ross grieving, and shockingly, I'm in a pretty good place right now. I'll have to write about it later. Nevertheless, I'm
I know my Chair is probably burnt out from dealing with my crises and from generally being overworked and underpaid, so I've been hesitant to say anything - plus, his wife is expecting a baby any day now, and holy crap, I forgot to ask how she was doing and I pray she did not actually have the baby yet because that would make me the hugest, self-centered jerk ever! However, stress got the best of me today, and because I'm super Type A, I just had to tell him what was up, because one of my 'solutions' for the fall is to make a change to one of my classes that needs to happen within the next few weeks, before students start registering. Today seemed like just as good a day as any to burden him with yet another of my problems. Now that I think about it, it's probably better now than after his baby is born (which hopefully it was not). I think I hit a new low, going into his office and squeaking about my hip problems in my barely-above-a-whisper voice. Like, gee, am I not the most pathetic employee EVER? I know, I know, I didn't ask for any of this to happen, but even my own mind is boggled over the ridiculous sequence of health catastrophes I've had over the past few years, and I have to admit that if I were an outsider looking in, it would come across as attention-seeking behavior. I mean Jesus Christ. Fortunately, my Chair is an outstanding human being, and I feel better now, because he held my hand (not literally) and told me it's going to be okay. Also, there has been a lot of crap coming down on me this year, and whereas I'd normally get snarky and combative about a lot of it, I've been extra chill, just because my department was sooooo supportive of me with the cancer ordeal, I feel like I need to grin and bear it and play nice. Now I'm suuuuuper glad I haven't been a jerk, even when I've wanted to be (and if you know me, you know it takes a lot of self-restraint for me to not be a jerk).
And oh my gosh, as you may have guessed by the title of this, that's not even what I came here to write about. On the other side of the ping-pong net, there's CANCER. A while ago, I wrote about how I was in what I suspected to be a tamoxifen-induced stupor. I re-read those words I wrote, and I can't believe those words came out of me. That wasn't me. I went to see my primary care doctor about this, and he really helped me out of the hole. I wish I had written about it then, because I don't really remember the details, although I do remember him telling me that if he thought I was going to harm myself, he was obligated to have me locked up for three days. I told him that even though I was hoping to die, I had no plans for how it would happen, and apparently that was okay. As long as there's no plan.
I took an anti-depressant for a little bit, but it made me feel horrible, so I stopped. I stopped everything - the anti-depressant, the tamoxifen, the baby aspirin. It was my own decision. My PCP did not really approve, and told me I needed to talk to Dr. M about it ASAP, although I do think he could see firsthand at my follow-up appointments that I was sooo much better, so he didn't push it too much. I think it was mostly due diligence. I also, somewhere in all of this, had an appointment with Dr. T, who, as usual, expressed concern over my weight. I briefly explained to him that I really felt like the tamoxifen had done a number on my appetite, but that I wasn't currently taking it, and I had actually gained weight since I stopped (which basically makes me the opposite of pretty much every other woman I know who has taken tamoxifen, but whatever). He obviously didn't approve, either, and urged me to see my oncologist about alternatives. Unfortunately, I know what the alternatives are, and they don't sound fun, either. And I just wanted to enjoy being myself for a while.
But stress of my recklessness eventually got the best of me, and so I made an appointment to see Dr. M. That appointment was today. I haven't taken the tamoxifen in about three months, so I think I have a pretty clear picture of the effects it was having on me. First and foremost, the severe depression was definitely the tamoxifen. I think it snuck up on me, though. I'm not a super happy person naturally. I don't handle stress well at all, and while I think I have a deep appreciation for life that might surprise people who don't read my blog, my default mood is more melancholy than happy. A low-level disgust with life in general is normal for me, lol, BUT, I've never experienced anything like I did in December, and it was quite honestly downright scary. Second, I've mentioned a couple of times that I felt like all those surgeries I had made me stupid, and I really wasn't kidding. Since cancer, I have not felt as mentally sharp as I used to be. Many people who have chemo talk about 'chemo brain,' which is a real thing. I didn't do chemo, so for a while I just thought I was having empathetic or guilt-induced chemo brain, or the exhaustion from all the surgeries and trauma of cancer in general zapped some brain cells, or at least some dendrites. The thing is it never got better, even a year later. I still felt foggy. When you're standing in a large lecture hall, lecturing to 85 people, and not only can you not think of words that you could once spout off in your sleep, but you also can't even remember what you were talking about to think of an alternative explanation, it becomes pretty clear you aren't just making it up. It turns out a lot of that was the tamoxifen. Not all of it, because these lapses still happen occasionally, BUT, I am so. much. better. And finally, there are the little things - nausea, loss of appetite, cramps, fatigue, hot flashes.
I reflected on all these effects before my appointment and decided that I could put up with the little things, and probably even the tamoxifen brain, but that I was so terrified of the depression that I was pretty sure I didn't ever want to take the tamoxifen again. Then again, there was a little voice inside of me that said maybe it was doable if I vowed to be extra vigilant about looking for signs that I was heading downhill. However, I was pretty worried about this, especially considering that with four impending surgeries and over a year of intense rehab ahead of me, I really need to be in as positive a state of mind as I can be.
These were the things on my mind as I headed off to my 4:30 appointment with Dr. M. I started off telling him in some detail of my slow decline October through December, ending with me crying in my PCP's office and on the brink of being locked up for three days. I told him I had stopped taking the tamoxifen, that I hadn't taken it in three months, and that I felt great. I basically told him most of what I wrote above. He listened very carefully, then said definitively that he was completely okay with me not taking the tamoxifen. I mean, obviously it's my choice and no one can make me take it, but he didn't say it in a you are being stupid or well it's up to you - I don't care if you die! type of way. He said it very thoughtfully.
Then he said he wanted to make a few things clear. I should not see tamoxifen as a 'life-saving' drug. The original cancer is gone. The mastectomy was what was 'life-saving.' Tamoxifen is simply a drug to help reduce the chances of a recurrence. Since I've already had cancer, and I still have breast tissue, I'm at a high risk for getting more cancer. But, a recurrence doesn't necessarily mean I will die - 'It just means that in a few years you might be sitting in my office again, going through the same thing you went through before, facing the same choices.' Weirdly enough, that statement was both alarming and comforting at the same time. Of course I don't want to deal with this again. At the same time, how bad was it? I mean, I'm here, after all. And there was a time in December when I really didn't think I would make it, nor did I want to. Dr. M did mention that there was a chance that the cancer would come back as metastatic cancer, but that could happen even I continue to take the tamoxifen. The cancer may come back, in any form, regardless. He concluded, 'When I hear that the tamoxifen has turned a perfectly good microbiology professor [sic] into a vegetable, I vote to stop it.'
He said the chances of a recurrence are approximately 20%, and the tamoxifen reduces that to around 10%. Which... wow, sounds like a lot. 20% sounds so high. Then again, so does an 80% chance of it NOT coming back. Of course, I'm a glass half empty type, so this is a tough one. Then he pulled up a web site called Adjuvant Online, which is a tool that supposedly more accurately predicts your chance of survival five and ten years out based on your age and cancer stats. We plugged in my stats, and he got a kick out of the fact that I had them memorized. He was looking around trying to find my Ki-67 value, and I informed him it was 11. LOL. According to Adjuvant Online, I have something like an 85% chance of being alive in five years and a 77% chance of being alive in ten years. (It's sort of a morbid tool, now that I think about it.) I would normally remember the exact numbers, but I was sort of fixated on how low they seemed! I mean, yikes, 77%, that's barely a C+ in my book! Then he said the problem with the tool is that the death rate didn't just include people who died from cancer; it included people who died from anything, including plane crashes, whatever. That made me feel a little better, but still. I asked him if 'survival' meant a cancer-free survival, or that you were just alive five and ten years later. He said that it just meant you were alive. So, you could have a recurrence, but so long as it didn't kill you, you'd still be in the 85%, or 77% (which would be possible with a recurrence of the same type of cancer in, say, my right breast, but unlikely if I had metastatic cancer). Somehow his conclusion from this was that I wasn't receiving a huge benefit from the tamoxifen, as my chances of being alive five and ten years from now didn't change a whole lot with hormone therapy, and based on what I had told him I should stop. This was a huge relief considering I had basically already decided I wasn't going to take it anymore anyway, but somehow I couldn't get that C+ out of my head. Yes, that's ALL DEATHS, but how many people actually die in, like, hiking accidents or random other tragic events?!
I was kind of surprised he didn't suggest an alternative, like shutting down my ovaries and trying a post-menopausal drug. I was pretty sure he would, and had all my excuses lined up. Like, I'm pretty sure I can't handle going through that and multiple hip surgeries at the same time. But he didn't even bring it up. I was relieved, but also a little disconcerted considering two oncologists suggested this instead of tamoxifen, simply because of my age. Ironically, I think I went with Dr. M because I liked his less aggressive style, and now I'm worried he isn't being aggressive enough. What can I say, I guess I am hard to please. In the end, we agreed I would continue to see him for breast checks every year, but otherwise we'll each go our merry ways. Then I asked him for something for this damn cough - something with a narcotic in it to help me sleep.
All in all, I felt like it was a good appointment, and overall a good day. I am willing to take my chances. I'm a little nervous, but let's be honest, I am going to be nervous no matter what. Lately, though, I've been feeling pretty optimistic about life in general, and I think that's probably because I haven't been on tamoxifen. Oh the irony. As I told my Chair, the fact that I'm considering the hip surgeries must mean I'm feeling optimistic that I'll live long enough to reap the benefits. Take the silver linings where you can.
So, goodnight tamoxifen, and goodnight to all. I'm going to go enjoy a big swig of my cough medicine and hope for some ZZZZZZs.
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