Saturday, March 11, 2017

This is a post about my hips. I can't think of a catchy title. Hip, hip hooray seems stupid, and not accurate.

Wow, I'm so grateful for this blog. Since I no longer write here frequently, I had forgotten just how much I put down in writing - both in terms of practical information, as well as the things I've gone through emotionally. I started re-reading old entries a few weeks ago, when friend told me that she was going in for a mammogram after finding a lump in her breast. This, of course, brought back a flood of memories, and I remembered that I had written about my first mammogram here. Then, just a few days ago, a good friend told me that she had just been diagnosed with breast cancer. :( As I sat with her and drank wine and talked - about doctors, about logistics, about nerdy scientific details (she's also a biologist), and, most importantly, about how this just plain old suckity suckity sucks - I realized how far away it all seems for me now. I really couldn't put myself back into her shoes, even though I had already been there. So many details that were once so vivid in my mind that I thought I'd never forget are absolutely gone, erased from memory. I'm not sure if it's because all those cancer treatments changed my brain, because I've intentionally blocked certain things out, or because - as a friend lovingly pointed out to me - I'm getting old. LOL. Needless to say, I got a good kick out of this post about How to be an Amazing Friend. Who knew I'd need the information from my own public service announcement post?

Ultimately, my lack of memory is probably a good thing. Hopefully it's a sign that I'm truly moving on, and not that the cancer has metastasized to my brain. I'd add an LOL to that to let you know I'm saying that somewhat tongue in cheek, but I'm only semi-kidding. I used to worry a lot about my memory loss, only now I'm fairly sure that tamoxifen was playing a huge part in a lot of it. That, however, is a topic for another post. Last I wrote, I was in a deep, dark tamoxifen-induced hole. I'm not going to lie - it was terrible. I stopped taking the tamoxifen, and I've been tamoxifen-free in 2017. To make a long story short, I am doing so. much. better. I am going to see my oncologist on Thursday to talk to him about this. Stopping the tamoxifen was something I did on my own, and he doesn't know yet. I'm pretty sure that he won't approve, but I wanted to be confident in just how much the tamoxifen was affecting me before going to see him about it. I will write about that appointment next week.

I actually came to write about something else: my hips. OH YEAH, remember my hips? Remember why this blog is here in the first place? During my cancer ordeal, my hips were actually pretty good. I'm not sure if it was because they really were going through a good phase, or that I was distracted from the pain, or if there's only so much pain/trauma the body can process, or because I spent so much of the time lying around, on pain medications, and/or drinking with friends. (I just had to add that last part in there in the interest of being as transparent as possible.)

I'm certainly grateful for that temporary respite, but unfortunately it was just that - temporary. My hips began to give me constant low to medium levels of pain a while ago - I honestly can't remember exactly when. Then, about a month ago, I was walking home from my parents' house (three blocks away), and I was hit with that grinding, OMG I CANNOT WALK pain, which I haven't felt in AGES. That pain stayed for about three days and then got better. And, of course, I was thinking, Well, this is it: the beginning of the end. The beginning of the end that the last orthopedist I saw told me would play out in one of three ways: bilateral PAO surgeries, bilateral hip replacement surgeries, or me not being able to walk anymore. (Read more here and here.) Obviously this prognosis did not make me happy, so I did what I do when I don't like something, and that is find another doctor. Ha.

I decided to just go straight to the very best doctor I could get. I don't want to mess around with possibly incompetent doctors that I cannot trust; I don't have time for that. So I asked Dr. T to help me find a highly respected doctor who was trustworthy and current on every possible treatment for my condition, and he did that for me. I knew it meant that I would have to go up to University Hospital, but it is worth it to me to know that the opinion I'm getting is one that I believe 100%. As I explained to the medical assistant, there is no way I am even going to consider having my hip cut into three pieces and screwed back together without a second opinion. In fact, I've really been leaning toward hip replacements just because my colleague recently had one, and it didn't seem that bad. I mean, don't get me wrong, a hip replacement is no fun at all, either; it's just that she's fairly pain free and walking really well right now, and she most definitely did not spend three months on crutches.

Anyway.

On Thursday, I had my much anticipated appointment up at University Hospital with Highly Acclaimed Hip Doctor. I was suuuuper nervous about the appointment, 'cause I'm a needy patient who needs a lot of hand-holding, and after experiencing such compassionate care from cancer-related doctors, I knew that pretty much any orthopedist would seem unpalatable. (I even discussed this with Dr. L here.) I could tell this one wasn't going to be a good fit personality-wise after watching video clips with him in them. He's this super intense pro-athlete who does extreme stuff like jumping off cliffs with a set of fake wings, plus he's bald, has a sort of angry-looking face, and is 'foreign' (um, for lack of a better term), so he has a rather 'severe' appearance and semi-thick, gruff, accent. So basically I anticipated that it would be like having an appointment with the Terminator (and that turned out to not be far off the mark, haha). But then I reminded myself that I'm over NICE orthopedists. NICE is why I spent waaaay too much time with my first orthopedist, who I now know was a COMPLETE LOSER. I mean, NICE is a bonus, but not my top priority. And so I went, with the mindset that this was more of a business trip than a therapy session.

The first thing I did was have X-rays taken (because Dr. Terminator is very particular about how he likes his X-rays taken), then the next person I saw (after the medical assistant) was Dr. Terminator's fellow, which confused me at first, because he had hair. And it was black. So I was thinking, wow, maybe Dr. Terminator grew some hair?! until the fellow introduced himself as some name I didn't comprehend. And then I remember that at University Hospital you almost always see multiple people. At least I was spared the med students today! Dr. No-Name seemed a little uncomfortable at first, but got better. He took a thorough history, which was quite a challenge, because he had a thick accent and was difficult to understand at times. Indian, I guessed, which he later confirmed when I told him I was born in Thailand. (Oh! I'm from India! he said. So, nearby. Ummmm, okay? I mean, if by 'nearby' you mean the same continent. Ha.) Anyway, after the medical history, which took about 15 minutes, he did an orthopedic evaluation like I have never received before, evaluating my various functions (or lack thereof), ranges of motions, pain, etc., for, like, half an hour. As he did all of this, we chatted, and he warmed up a little. Then he told me that he would go see Dr. Terminator and come back. On his way out, though, he told me point blank, 'Your hips are bad. You need the cutting surgery ( = PAO). Sorry to say. I mean, look at that!' He waved his hand in the general direction of my X-rays, which he had pulled up on the computer screen. I guess to a person who spends all day looking at hip X-rays, they look glaringly awful, but to me they just look normal. (On a side note, my first orthopedist, Dr. Loser, NEVER took X-rays of my hips, which I now understand is pretty much bordering on negligent.)

I was sort of surprised, because in my experience with residents and fellows, they don't usually just tell you something so definitively, on their own. But after a while, he came back with Dr. Terminator, who concurred. Conservative treatment is absolutely not an option for me if I want to be able to walk within the next few years. I know this shouldn't have been a shock, but it still was. What can I say, I have an uncanny ability to stay in a state of completely delusional denial. I guess I was holding out hope for I don't know what. Maybe a new, cutting-edge, conservative treatment? That my hips aren't THAT bad? That I can just get by for the rest of my life using a combination of PT and great drugs? That Orthopedist #2 was a crackpot, just like the first one? I don't know. Orthopedist #2 told me I had a severe case of dysplasia, 'one of the worst we've seen in a long time,' but I felt like that was extreme? Liiiiike, hey buster, how many hips do you actually see in a day?! Because despite the fact that I live in what's now considered a real urban area, I guess I still see it as a 'small town,' with 'small town' doctors. But basically Dr. Terminator confirmed EVERYTHING Orthopedist #2 told me, and then some. It was pretty much a second opinion on steroids. Not only do I need to do something, but I also need to do it pretty much ASAP. Apparently when you have such severe dysplasia, once you start developing osteoarthritis - and apparently I have - you can go downhill very quickly. Meaning, if I do nothing, I could find myself unable to walk in a few years. So, that's a lot to wrap my head around.

He strongly recommended against hip replacement for me, because of my age and my activity level. Now, I know I've said before that I'm a bit of a couch potato, but that's not entirely true. I feel like a couch potato compared to my activity levels in my previous decades, but I guess compared to the general population, my lifestyle is considered active. I don't run or work out or do CrossFit or other fitness boot camps like some of my friends, but I do have a job where I'm on my feet all the time, and walk several miles a day just going to various places on campus to get to classes, meetings, and so forth. I also like to ski (we got 10+ days of skiing in this year), and I'm now coaching diving, too (not scuba diving - the type where you jump off a diving board). Granted, I'm COACHING, and not DIVING, but I lead warm-ups, dry-land activities, and I like to jump on the trampoline, and occasionally go off the diving board. These things would be mostly out, or come with severe restrictions, if I have my hips replaced. Also, if I do them, even if I'm not 'supposed' to (as a hard-core athlete, Dr. Terminator is all too familiar with people doing things they shouldn't), it will put more stress on my artificial hips and lead me to need new ones earlier. We did not talk about the actual restrictions in detail, and of course I came home and immediately started to Google some of them, because I know that my colleague who had her hip replaced is planning to ski in the future. But I think the point Dr. Terminator was trying to make is that the reality of a hip replacement for me is that 1. At my age, the hip replacement would not last, and would definitely require additional surgeries in the future; and 2. Would come with immediate and life-long restrictions. With respect to skiing, for example, it's probably fine if you just stick to green and maybe blue slopes. Or, if you were a world-class skier before the hip replacement and really know what you're doing (I don't), blacks are probably fine. I'm not a great skier, but I do like to do the occasional black, I'd love to learn how to ski moguls properly, I sometimes enjoy catching some air, and skiing a bowl is definitely on my bucket list. All of those would pretty much be out with a hip replacement - or if not out, then really, really stupid things to do. And a big concern with hip replacements is that they can dislocate if you engage in forbidden activities, which also sounds awful.

Another point I've been sort of mulling over while I think about this is the fact that part of the reason I'm not super active right now is because in addition to having cancer and serious hip pain that limits what I can do, I have a full-time job and young kids. In the past few years, I've spent a lot of time having surgery and recovering, and my activity levels have definitely declined. Now, I spend a lot of time in pain, but even without the pain, it's not as if I have tons of time to train for marathons. Not that I want to run a marathon or anything, but before I had kids, my husband and I played tennis, racquetball, lifted weights, did lots of things we haven't done in 11+ years. Maybe someday I'll want to do more than I'm doing right now. I mean, maybe not, but at the same time, I don't want to make a decision right now that will definitely put restrictions on me for the rest of my life. Dr. Terminator said the goal of PAO is to make a new hip, and once it is healed, you can do whatever you want. Hell, maybe I'll get inspired to make a comeback like Laura Wilkinson. HA!! In contrast to the feeling I got from Orthopedist #2, Dr. Terminator views PAO as a surgery that I would do INSTEAD OF hip replacement. Obviously he cannot guarantee that I'll never need a hip replacement if I do PAO, but the ultimate goal is that I won't need a hip replacement, ever. He stressed this more than Orthopedist #2, who sort of made it sound like PAO was something you did to delay hip replacement for a few years.

The other thing I was worried about is whether I'm too old for this type of surgery. In all my 'research' ( = consults with Dr. Google), this seems to be a surgery that is done on teens and people in their early 20's. Dr. Terminator told me that, yes, this was originally done on young people, but that's because that's when hip dysplasia is traditionally diagnosed. He said that the vast majority of his patients now were my age - between 40 and 50 - and offered to connect me with some of them so we could meet and talk.*

* Yesterday, someone from his office called me and left a message with the name and number of a woman who lives near me who is also one of Dr. Terminator's patients. She told me that this woman wasn't available tomorrow because she's running a 50K, but could talk on Sunday. Even if it's true, is that not the most overt, contrived type of 'advertisement' possible?! HA!

His plan for me, should I choose to go with him, would be to first have new MRIs done on both hips, as well as a CT scan. These will help him know if I'm even a candidate for PAO, and if I am, they will help him make a more precise surgical plan. If the articular cartilage is too shot, then I might not even be a candidate. (In a way, this would be easier because then I'd have no choice but to get hip replacements.) However, he did say that even if my cartilage isn't tip-top, he'd probably still recommend PAO for me, because of all of things discussed above.

As far as the surgery goes, each hip would actually involve two different surgeries. (UGH!) The first would be a hip arthroscopy to fix or reconstruct the labrum, clean out bits of cartilage, and possibly do a microfracture procedure on the bone to stimulate development of new cartilage. The idea is that the joint should be as clean and in as good shape as possible before the realignment procedure, so that once you're healed from the PAO, you're good to go. Then 7-10 days later, you do the PAO. You really can't do both at once because of the time constraints, and how much blood you lose. I said it was interesting because Orthopedist #2 had told me I should do the PAO first, then the arthroscopy. His reply was, 'That's because he obviously doesn't do this very much.' LOL. He said that in order to do the labral repair, you have to pull on the leg to make room in the joint, and you can't do that on a hip that has been sawed apart and screwed back together, so you'd have to wait for it to heal first - 'And most of my patients wouldn't appreciate having to turn right back around and go into another surgery after the PAO rehab.' It makes sense. And to be fair to Orthopedist #2, he doesn't actually do PAO, so it's not just that he doesn't do it much, he doesn't do it at all.

So... I'm not super thrilled about any of this, obviously, but I feel confident now that there are no other options, and the opinions and recommendations I've received from two orthopedists are valid. Dr. No-Name and Dr. Terminator were extremely thorough - Dr. Terminator even repeated much of the physical exam - and the appointment from start to finish took an hour and a half (!!). And yesterday, I was able to read the five-page report (!!) from our visit.

I haven't had time to get emotional about any of this, and in a way I think it helps that Dr. Terminator was so cut-to-the-chase blunt and unapologetic. Basically he doesn't know me, couldn't care less about what I'm feeling, couldn't care less what I do, which in some sort of weird way adds validity to his opinion. I went into the appointment with my game face on, and he gave it to me straight. He wasn't like, Yeah, poor you, I know you've been through a lot of shit lately, and might not be ready for this, so why don't you think about it and come back in six months? It was more like, yeah, you can cogitate, then come back and see me in six months to a year, in a wheelchair. Ha. Okay, so that's not totally true. He did actually allude to the fact that he had read my file, and understood I had been through a lot as of late, and understood why I put off dealing with this for the past year. Unfortunately, none of that matters. No matter how much I feel like I deserve some kind of break, I don't have that luxury. Cancer or no cancer, this isn't something that can wait, and I think I needed to hear it like it is.

Interestingly, the only time he really showed any sign of emotion, was when I was telling him about how things went down with Dr. Loser - and I didn't even get to the part about DVT. When I told him I had the hip arthroscopy done, he asked me, 'He didn't tell you that your hips are severely dysplastic and that it wouldn't work?!' He practically screamed it, and I'd say that he looked angry, though in my opinion he looked sort of angry, or at least grumpy, the whole time, so it's hard to say. LOL. I told him, no, that no one in that practice ever mentioned dysplasia to me. However, I had read the surgery report and Dr. Loser had written that I was 'borderline' dysplastic, with a center edge angle of about 20 degrees. (Center edge angle is commonly used in diagnosis of dysplasia. Anything above 25 is normal, 20 is 'borderline,' and below 20 is dysplastic. After reading Dr. No-Name and Dr. Terminator's report, I see they calculated my center edge angles to be 1 degree on the right and 5 degrees on the left.) Then we got to the part where I talked about trying cortisone injections. I said I had one before the surgery, to try to avoid surgery. Then I had one after surgery. He seemed a little baffled I had one AFTER surgery. When I told him that it was because my hip was still hurting a lot, he said, 'Of course it was, because the surgery wasn't ever going to work,' all the while shaking his head and looking disgusted. I think he might have even rolled his eyes. Later, when Dr. Terminator left, and it was just me and Dr. No-Name, I asked him if I should write a letter and complain about Dr. Loser. He said, 'I don't know about that, but what he did is really bad. I don't know how he missed this,' all the while shaking his head. He reiterated that my dysplasia is really severe and was shocked that no one informed me of this earlier in life. He added that he couldn't believe I put up with the pain for so long and based on my hip architecture, expressed surprise that I can still walk, which is pretty much the same thing Orthopedist #2 and his NP told me as well. So, yay, am I not amazing or what?! LOL.

Anyway, I'm not sure where I am with all of this. I was sooooo looking forward to summer, and now my summer is looking very different. Depending on when I can do the surgery (IF I do it - I'm not 100% decided yet), I may not even be able to recover in time for the fall. According to various sources, you can go back to a desk job in eight weeks and a manual labor job after 3-4 months. I don't do manual labor, but I also wouldn't consider my job a desk job. I've fully accepted that I will have to teach on crutches at some point - there's pretty much no way around that - but it's not just the crutches, it's that this is an exhausting recovery, with a lot of pain involved. At the same time, I don't know how I can NOT work next fall after taking the fall of 2015 off because of cancer and the fall of 2014 half-time because of DVT. And this is just one side. Then there's the left side. I'm just a jewel of an employee, aren't I? Not to mention, I'll be house-bound and USELESS for 2-3 weeks, and won't be able to drive for a couple of months, so I'll be a huge burden on everyone, and cancer pretty much used up all of my I need help around here! cards.

So right now, I'm fairly wrapped up in logistics, which is actually good because it keeps my mind away from the emotions of it all, which pretty much make me want to cry.

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