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 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 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.

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'm sort 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.

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.

Death by Tamoxifen

I have really been struggling lately. A lot. At first I just thought it was my usual tendency to struggle, to hate life, rearing its ugly head. After all, it is the end of the semester, the time when my students push me to the brink of insanity, and it is Christmas, a time I have come to mostly dread. So there is a lot of stress, and as I've mentioned about 1,000 times before, I have the most pathetic level of tolerance for stress ever. I used to drive across town to ask a question in person rather than making a phone call, because phone calls are stressful. True story. (I've gotten better since then, thank goodness.)

But I feel like I am deteriorating, and rapidly so. I basically spent all of yesterday crying and hoping I would die. I kid you not. It felt like a true medical emergency. I have never felt that way before. I called my primary care doctor, but he had no appointments available. I called my medical oncologist, but he had no appointments available, either. I cried and told them it was urgent, but this did not make an appointment become available. I briefly considered going to the ER, but I didn't want to end up in a straight jacket in the psych ward, so I guess I haven't totally lost it yet. Thankfully I calmed down. Today, I feel flat, almost like a manic-depressive post-mania, except I've actually come up and not down.

And now I'm wondering - is this me, or is it the tamoxifen? After I took my daughter to school this morning, I crawled back into bed and couldn't make myself get out. After all, I didn't have to. 'Having to' is my only motivation to do anything these days. Eventually, I forced myself to get up because my husband was giving me weird looks. Instead of doing what I need to be doing (Christmas stuff), I went to see Dr. Google, who told me that this could very well be the tamoxifen. I figured the tamoxifen wasn't doing me any favors, but since I've been on it for over a year and haven't managed to kill myself, I didn't think that's what it was. And maybe it's not, but oddly enough, the idea that it might be is sort of comforting. I mean, yay, this medicine that is supposedly saving my life is giving me suicidal thoughts! What an awesome scenario! Apparently among those people who suffer from severe depression as a result of tamoxifen, the depression starts an average of eight months after they start taking tamoxifen. Oh, and Dr. Google also told me that most anti-depressants hugely reduce the effectiveness of tamoxifen because they are CYP2D6 inhibitors, and the enzyme CYP2D6 is what converts tamoxifen into its superhero status.

So here we are.

I'm going to discuss this with my doctor this afternoon. My husband begged and got me an appointment.

I wrote this elsewhere, but I am reposting it here now that I believe I may have written it in a tamoxifen-induced drunkenness.

This is how it feels.

In the morning, you wake up tired. You are always, always tired. It is dark outside, and it is dark inside. The darkness seeps into every tissue. You hit snooze. You close your eyes and try to go back to sleep, but when you close your eyes, all you see is blackness. The blackness swirls, like a tornado, and wraps around you, grinding at your heart and soul.

You try all your tricks. You take a deep breath in and tell yourself 'Blue skies in,' and try to imagine a blue sky with fluffy white clouds, entering your body, penetrating the darkness. But the blue sky isn't there anymore, only darkness. You breathe out and try to find the right words for what you are hoping to rid from your body, but you can't think of the right words, because your brain is fuzzy and at about 70% of what it used to be. But you can picture it. Some sort of insects fly out - locusts or flies - like in The Green Mile. But they don't go far; they swirl around in the darkness that envelops you and find their way back in.

You hit snooze again. You pull the covers over your head, and you wonder what would happen if you just didn't get out of bed. Then you realize you don't really need to wonder, because of course you are going to get out of bed, because you are an adult and two small people depend on you to get out of bed. It is warm in your bed. You try to soak up some of the warmness, hoping it will melt the black away.

You hit snooze again. As you start waking up, you realize that not only are you tired, but you are also nauseous. You don't know if it is a hangover, because you have been drinking every night, because that used to help take the edge off of your anxiety. It doesn't help anymore, but you do it in anyway, maybe because you're on a self-destructive path, or maybe, just maybe, you are daring the cancer to come back and kill you. Or maybe it is the tamoxifen, and menopause. Or maybe it is your job frustrations, your relationship frustrations, your terror about the future of the country, that have put your GI tract into a permanent, dysfunctional knot.

Your radio goes off again. The classical music doesn't soothe you anymore; it irritates. You realize that you absolutely have to get out of bed. Your kids have to go to school. You have to go to work. You count to ten to try to psych yourself up. Your blood pressure rises. Your heart is beating so hard and so fast that your carotid arteries expand with such vigor, it feels like a twitch.

You finally get out of bed, but mostly because you have to pee. The bathroom is cold. Your closet is cold. This is a part of your new condition; you are always, always cold. You aren't sure if it is actually cold, if it is the medicine, or if the darkness swirling inside you manifests itself as a constant chill, a metaphor sprung to life.

You wake your kids up. You have given up on your daughter. It is too late for her. The painfulness of this realization eats at you, because you know her shortcomings are direct reflections of your parenting failures. You focus on your son. There is still hope for him. He has an inflexible morning routine that starts with him cuddling in your bed with you. It is one of the only reasons you can make it through the day. At the end of the cuddling, you make it through another 24 hours so you can experience the joy of cuddling the next morning. You feel ridiculous that your life has been reduced to this.

You take the kids to school, you go to work. You are such an expert at hiding how you really feel that no one can see the darkness that blankets you. You push the darkness inside you, deep, deep, deep, where no one would suspect it. But that has a price. It struggles to escape, eating your insides in the process.

You pick your kids up from school, you go home. You take everything out on your daughter, because she is an easy target. Your relationship continues to deteriorate; you know you are stuck in a bad cycle, but you can't help yourself. You say things to her you cannot believe you are saying. It doesn't even feel like you when you are talking. You lavish praise on your son. You know you should try to do the same with your daughter, but there is not much to praise. It feels like a cosmic slap in the face to be a mother to someone with whom you are so incompatible.

If you're lucky, you manage to grab a nap, because you are tired. You are always tired. Then you try to cook dinner, but it's hard, because you don't enjoy most foods anymore. Eating is mostly a chore. But you try, because otherwise your doctor will lecture you, and your clothes will become unwearable, and you don't want to have to buy new clothes.

Your husband comes home. You don't talk a lot these days because there is so much to disagree about, it's better to just hold it inside. You drink. You don't drink wine anymore because white wine tastes like gas and red wine tastes like blood. Instead, you drink a martini because the taste is somewhat foul, but at least you know it tastes the way it is supposed to.

You get the kids to bed, then if you haven't had enough martinis, you choose another sleep aid: cannabis, melatonin, Ambien. You may or may not take your tamoxifen. You are confused. Part of you thinks the tamoxifen is doing this to you, making you so miserable you don't even care if the cancer comes back. But then you wonder if you stop taking it and start wanting to live again, will you be sad if the cancer comes back?

If you're lucky, the sleep aid will work, and you might get a few hours of sleep. Sleep wraps around you, temporarily removing the burden of darkness. It is your only escape. You wish you never had to wake up. But you congratulate yourself on making it through another day, and look forward to cuddling with your son in eight hours.

Weighty Issues

Now that I have confessed my personal failures in a public place, it is probably time for me to get back to stuff like, you know, cancer. I mentioned in my previous post that I spent a fair amount of time with Dr. T and his PA, Pamela, over the past year, as part of the application process for PA school. I also spent a fair amount of time seeing them as a patient. (Yes, it was/is a bit awkward at times.)

I had been seeing Dr. T to get steroid injections to decrease the thickness of my abdominal scar. The injections worked well, and my scar has flattened significantly. Unfortunately, the injections also caused the skin around the scars to become white ( = hypopigmentation in medical speak). As much as I would like to have white skin in Donald Trump's America, alas, I am not white. LOL. It was actually fairly alarming for a while, but it is getting better now that I am no longer getting the injections. So, every 4-6 weeks on average, I drive 60 miles to see Dr. T, he tells me the scar is getting better, then says to come back in another 4-6 weeks. It's sort of a waste of time, and gas, but I'll admit that I'm sort of dreading the day when he says, 'I don't need to see you anymore. Have a nice life!' After sharing such an intense experience with him with my reconstructive surgery, then tagging along with him and Pamela through many clinical hours and through many surgeries over the summer, it's hard to imagine the day when he won't be part of my life. I wonder if doctors feel the same way about their patients. Will he miss seeing me?

At my last appointment, about a month ago, he and I and Pamela spent most of the time talking about my upcoming interview. Eventually he remarked that my scar was looking better, and so was my skin. Then he asked me, seemingly out of the blue, 'Have you been swimming?' I was sort of like, 'Huh? No.' I don't swim. WTF? Only later did I realize that the reason he thinks I swim is because when I was recovering from surgery, I kept asking him when I could get into the water. Since I didn't want to admit that I really just wanted to sit in the hot tub, I told him I wanted to swim. I mean, same difference, right? And now he thinks I swim - HAHAHA!!

He wrinkled his mouth into a disapproving knot, then remarked, 'You've lost a lot of weight.' Then he went on to say that I've always been on the lean side, but I can see your obliques. He then proceeded to lecture me about how I need to take care of myself, as he has in the past. This always makes me a little uneasy. It's true, I've lost weight - about 10 pounds since the beginning of my cancer ordeal. But it's not like I'm underweight or anything. I had 10 pounds to spare, LOL. In fact, I'm pretty sure I weigh more than Pamela, and I probably weigh about the same as Dr. T! And it's not like I'm purposely starving myself. Between work and shuttling kids around, I work crazy hard, and I grab snacks when I can, but I don't eat lunch on most days. Add into this insane levels of stress, and you have the recipe for losing weight and keeping it off. I guess?

The thing is, I enjoy being thin. What is not to enjoy about it? Ha. For most of my adult life, I hovered about five pounds above what I would consider my ideal weight. I used to joke that the only way I could get to my ideal weight was to not drink alcohol, and that wasn't worth it to me. Now, inexplicably, I'm a few pounds below that 'ideal' weight - and with literally no effort on my part. I mean, I've always tried to eat well and be active, but it's not like I diet or do any type of organized exercise routine. I heard so many stories of women gaining a lot of weight on tamoxifen, and I was honestly a little worried about what a 15-20 pound weight gain would be like for me. So to me, the fact that I've lost weight just seems like crazy good luck!

I try to honor my promise to Dr. T that I'll 'take care of myself' but if I must be completely honest, gaining weight is not at the top of my priority list, or even on my list at all. I mean, hello, the weight is going to come back and then some, at some point, right? It seems vain to revel in being thin, but at the same time, have I not been through enough in the past couple of years? Can I not just sit back and enjoy the fact that for whatever reason, cancer made me thinner? If I could not have cancer and not have hot flashes and cramps and constant bruising from the baby aspirins I have to take so that tamoxifen won't give me a blood clot, I'd trade the ten pounds in a heartbeat. But that's not possible, so I think it's fair for me to try to soak up the tiny ray of light granted to me by this small and temporary consolation prize.