In general, rate your overall health.

It has been a while. That's good, I guess. <false cheerfulness> I'm moving on with life. My new normal. </false cheerfulness>

Whatever.

Honestly, I've been in a huge funk. The world is getting me down on so many levels. It seems like such a cruel joke for a person like me with zero tolerance for stress. There are too many senseless things going on in this world, several of which hit a little too close to home. I alternate between trying to get psyched up to become one of those breast cancer survivors who is like Thanks to breast cancer I now love life and complete an ironman triathlon every week! and thinking Fuck it all. I'm pretty sure I'm going to get shot to death before I die of breast cancer. I'm going to get me some pot and chill the fuck out before someone fucking kills me.

Seriously.

Anyway, I didn't actually come here to philosophize. I came here to write about a pretty trivial thing that happened last week, but nevertheless struck me as blogworthy. I lamented on Facebook about how I've been completing a lot of surveys about my healthcare experience, and one of the questions that always gets me is: In general, rate your overall health. WTF does that even mean - 'in general'? Does 'in general' include the potentially life-threatening condition that causes me to get these surveys in the first place, or does it mean 'other than having cancer'? My Facebook friends offered no insight into this; instead, the conversation quickly turned to the fact that hospitals lose a lot of money from Medicare reimbursements if their ratings aren't high enough, and that nurses can get in trouble if they deny quadruple bypass patients a double serving of bacon. But that's okay; I really didn't expect an answer. It's a stupid question.

So imagine my surprise when last week at work, I was attending a presentation by a guy who is interviewing for a position in my department, and he asked me the same thing. Yup. He was chatting along about the complexities of physiology, then he said, 'To illustrate my point, I'm going to ask a question.' Then he scanned the audience with one turn of his head each way until his eyes settled on me. ME, OF ALL FUCKING PEOPLE! Then he looked me in the eye and said, 'You. Would you say that you are a healthy person?'

I don't know quite what I did in response other than stare at him with my mouth open, but I do know that I think my colleagues were all just as uncomfortable as I was, waiting to see how I would respond. There were some uncomfortable guffaws and some sympathetic glances and the colleague next to me put her hand on my shoulder. Way too long of a silence ensued as the candidate demonstrated his command of sound pedagogy by waiting at least ten seconds after posing a question. But still, I could find no words.

It turns out that it was supposed to be a difficult question. In fact, his point in asking it was that there is really not such a thing as 'general health' - you can be lean and in shape and still have high cholesterol. Or high blood pressure. Or a bad heart. Or cancer, I mouthed to myself silently, and I'm pretty sure my colleagues did as well.

I've never claimed to be a healthy person, and obviously I am not. But the truth is that I do look quite healthy, which is probably why people always seem shocked that I have terrible disease processes wrecking my insides. It's also why, I suspect, the candidate chose me, of all people, to single out. I look healthy. I must have seemed like a safe person to ask without offending. He could not have anticipated that he would ask someone who understood exactly how difficult of a question it is. I hope we hire him so I can tease him about it. Or threaten to sue him for harassment if he ever pisses me off.

Vacation from Tamoxifen

I've been under the weather for what seems like way too long. On Tuesday night, I noticed I had a sore throat that started around bedtime. Then my daughter woke us up in the middle of the night to tell us her throat hurt, and in the morning woke up crying and saying she couldn't go to school (which means it's bad, because Ellie loves school). Unfortunately for her, not going to school meant coming to physical therapy with me, then up to work, where she took a nap in my office then threw up in the trash can outside my office. We came home after my work meeting and both took a nap. The only thing worse than taking care of a sick kid is taking care of a sick kid when you yourself are sick. Ugh. By Thursday, Ellie was fine, but me... not so much. I don't feel sick sick, just under the weather and very blaaaaah. And I feel like I'm getting progressively worse rather than better.

Anyway, I'm not writing this as a woe is me post. I'm writing this because I saw my oncologist on Friday, and I was feeling pretty dang crappy at the appointment, and NOT because I was hungover, haha. In fact, my litmus test for sickness is my desire for alcohol, and the thought of wine has repulsed me for four days. The tricky part about being sick is that the appointment was to discuss how the tamoxifen has been treating me, and it's hard to know when you've been feeling soooo crappy for the past few days. The tamoxifen does seem to have some side effects, but of course it's hard to know what is the tamoxifen and what is the cold and what is just... life.

I told Dr. M that the tamoxifen wasn't as bad as I was expecting, which admittedly isn't saying much. Then I mentioned that one thing I've noticed about the tamoxifen is that, in a way, it makes me feel like I'm pregnant: I have a bit of nausea in the morning, higher than normal levels of fatigue, and unexpected aversions/cravings where food is concerned. Then he looked at me suspiciously and asked, 'You aren't pregnant, are you?' I sat there for a second, shocked, before I was able to reply, 'No. NO! I'm definitely NOT pregnant!'

We then discussed the fact that a lot of what I'm feeling isn't textbook tamoxifen, so it may or may not be due to side effects. As Dr. M pointed out, I have been through a lot; I should be tired. That actually made me feel a little better, because I feel like at this point I am supposed to be normal and happy and cherishing life and making the most out of every day because, after all, YAY I AM A CANCER SURVIVOR! Or something like that. But I don't feel that way; I feel pretty blah and crappy - sort of like I had my abdomen sliced open, scooped out, and super glued shut in the recent past! Dr. M nicely pointed out the latter to me, while at the same time not dismissing my fatigue altogether. It could be the tamoxifen. It could also be something else - a thyroid problem, for example. He also mentioned that my MCV (mean corpuscular volume) from my blood draw last week was a little low, which suggested I might be slightly anemic. We also talked about my on and off insomnia, and how that could be a factor, too. He asked me if my insomnia was a 'pre-existing condition' and I said yes, though the tamoxifen certainly isn't helping, because I do have hot flashes at night that wake me up.

The thing is that none of this really matters. There is no alternative to tamoxifen, other than not taking it, which would not be a prudent decision, IMO. I mean, I could always go for the ovarian suppression + aromatase inhibitor, but that would almost certainly have worse side effects. Nevertheless, Dr. M seemed to feel that we should try to tease out the real effects of the tamoxifen to make sure we aren't missing anything else that needs attention. Once we are more certain of the side effects, we can perhaps work toward managing some of them, as needed. As he said, 'I don't want you to be miserable for the next ten years.' Oh yeah? Me neither.

With that in mind, Dr. M invited (yes, invited) me to 'take a two-week vacation from tamoxifen.' The cancer isn't going to come back in two weeks, and 'If the clouds part, and the sun comes out, and you're like ahhhhhhh! then at least we'll know it's the tamoxifen.' Then he said, 'I have a Ph.D. in biology. I understand how it works: you eliminate one variable at a time.' LOL. I joked that he should come in and cover the cancer section in my classes. (And being that he is no Dr. T, he pretty much rolled his eyes at me and said Chhhhhyeaaaaah, right.) He also said that it couldn't hurt for me to take some supplementary iron or try to beef up the amount of iron in my diet to address my low MCV.

As much as I'd like to be like to be like YEEEEHAAAW, no tamoxifen for two weeks! I've decided to give it some time. Whatever the side effects, they are really not terrible. Plus, if I stopped taking it right now and started to feel better, I wouldn't know if it's because this damn cold finally got better or because I stopped taking the tamoxifen. Plus, I think I'm going to re-start taking a multivitamin, and wait, wouldn't that be introducing two variables at once?! See? I understand how biology works, too. LOL. There are so many moving parts in my life right now, there's no way to completely pin down what is causing what, but I will definitely take Dr. M up on his invitation at some point between now and my next appointment with him in six months.

In other news, I e-mailed Dr. T to tell him I was backing out of the surgery. The grown-up professional in me told me I should call him, but then I figured that would be more of a bother for him. Besides, if he were a normal doctor, I would not have his cell phone number, and at best I would be able to call the office and leave a message for him, or e-mail him through the patient portal. I thought I would feel really good after I canceled the surgery with his scheduler and let him know, but then the insecure schoolgirl in me stressed until he responded: No worries, Waning. I support you any way you decide to go. Have a wonderful holiday.

I'm really going to try to have a wonderful holiday. As I told Dr. T in my e-mail, I need a vacation from thinking about all this - hips, cancer, everything. I feel like my stress levels have been rapidly rising as I realize that it is almost December, and before you know it, it will be January, and I will have to go back to work. But that is getting ahead of myself. I really need to stay in the moment and enjoy the remainder of this year for what it is.

Lovely Dr. L

So, after a lot of reflection, I decided to go ahead with revision surgery. It is tentatively planned for December 4th, although I keep playing phone tag with Dr. T's scheduler re. the specifics. Usually when I make a decision like this, I feel good, and don't look back. I'm not a look back type of person.

The only thing is that ever since I made the decision, my stress levels have risen astronomically. I feel unsettled, not right. I don't think it is anything more than the fact that I can simply not face another surgery. I just can't. I thought once I committed I would rally and get geared up for it, but instead, I'm just filled with a horrid feeling of dread and doubt and enough is enough. My insomnia is creeping back, and I feel like crying a lot. My gut tells me this is wrong. I'm sure there are other things going on, too, and this isn't entirely about the surgery, but still. It's definitely not helping.

I regret being so hungover at my last appointment with Dr. T because I feel like I didn't ask the right questions or express the right concerns, and he is not the same on e-mail. I wish I could rewind and have a do-over of my appointment, without taking away the fun of book club the night before, that is ;-). But regardless, I also feel like Dr. T cannot be completely objective when he talks to me about what next. In a way I feel like we can't just have an honest conversation about pros and cons because he's trying so hard to not come across as pushy. Maybe we just know each other too well at this point. It's hard to say. We talk to each other so easily about everything else, but the topic of revision surgery seems to be a sticking point.

My husband is just about as tired of surgery as I am and thinks I should leave well enough alone. At the same time, he is sort of resigned to an 'I want what you want' attitude. I also think he's afraid to suggest that more surgery would be a good idea because that would be like saying the way I am now is not good enough for him, and that can get husbands into a lot of trouble.

So, what should you do when you don't know what to do? Get another opinion. See? I've actually learned something from all of this. So I called and got myself an appointment with Dr. L, because I felt like I was going sort of crazy, and she is my go-to person when I'm going crazy. Fortunately, in some of our e-mail exchanges, she had mentioned that she would love to see the result from the reconstruction, so I had a reason to make an appointment other than 'I need counseling.' It did cross my mind that she might come into the room and be like 'WTF are you doing here?!' but she didn't. In fact, she came in and said, 'Hi cutie! It's so good to see you!' and gave me a hug.

Dr. L thought the reconstruction looked great and that even my nipple looked great. Apparently the humiliated, flattened nipple is as good as it gets for nipple-sparing mastectomies, which is good to know. Like I said before, I'm just grateful to have any nipple at all, but somehow Dr. T led me to believe this was a bad outcome, so it's comforting to know it's normal, and that I never should have expected anything better. Then Dr. L asked me if I would do it again, which was an interesting question. We had a rather profound discussion about breasts and breast reconstruction and the weirdness of all of it. I told her that if I were to go back in time for a do-over, I'd absolutely do it again. It was the right choice this time. But if I have to deal with this again in the future? I don't think so. I told her that I had already questioned Dr. T about what I could do if I ever needed my right breast replaced, and he had told me that you can always use fat off your back. I told her that at a certain point, you have to ask yourself when is enough enough? All this self-mutilation for a feelingless lump of flesh that really serves no purpose? It's... weird.

Dr. L totally got it - all the complex feelings that go into and come out of all of this that are so hard to explain. She said she was curious about my feelings because 'my twin' was coming in this afternoon, and surprisingly had no interest in reconstruction right now. She asked if I would be willing to do peer-to-peer mentoring for any of her patients who were interested in reconstruction, particularly DIEP reconstruction, and I said absolutely. She said they were just starting a new program to connect patients with each other to help women understand the reality of mastectomy and reconstruction - to get the honest truth about what it is like.

Finally, we got to talking about revision surgery. She unequivocally said not to do it. Not yet, anyway. It's not just that I need time to heal and be normal, it's that I might not even need it, if being larger on one side is my chief complaint. She said that in her experience, it can take up to a year for the swelling from the surgery to go down, and she has seen cases where women had one breast reduced, then a year later it was too small, and they had to have more fat put back in. Her suggestion was to wait a minimum of six months and see how I feel next year.

It seems like a no-brainer, when you think of it like that. And when you think of it like that, you also realize that you are making decisions based around insurance and money, and that these might be the wrong decisions, if time is the only thing that can truly answer your question. Then your heart fills with love for this lovely woman who spent half an hour talking you through your complex emotions and giving you good, solid advice over an issue in which she has no vested interest at all.

It's totally clear to me now: I really don't want to do this. Not now, anyway. I need more time, and that's okay. In the large scheme of things, if waiting costs me an extra few thousand dollars, then so be it. I am hoping this isn't just because I think Dr. L is a goddess, and I would jump off a cliff if she told me to. I'm chalking it up to the nature of modern medicine, which is something like those 'choose your own adventure' books I used to read as a kid: patients are charged with forming their own opinions, then shopping around to find a medical professional who agrees with said opinion. After all, if something in my gut hadn't felt off, I never would have made an appointment with Dr. L in the first place. And quite honestly, I was pretty surprised by her strong anti-surgery stance. I mean hello, she is a surgeon.

So, I am going to call the surgery off and spend December healing more and enjoying the holiday season. I just need to call or e-mail Dr. T and let him know. I'm thinking about waiting until the night before, though. You know, just to get even.

Just kidding.

How much longer do I have?

I'm not going to lie; I've been feeling very depressed for the past few days. I don't know if it is the tamoxifen, the change in weather, or that the world is a very scary place these days. That we are essentially at war, one that is not going to end in my lifetime. Life just seems so... ugly. We all have personal struggles that we fight within ourselves, and I've been fighting plenty of my own as of late, but for what purpose? To get shot senselessly in the street or at a concert? So I can live to watch my children grow up in this terrible world?

Anyway.

We got a lot of snow last night and this morning, and as a result, we are all enjoying a snow day. I should be enjoying it more, I know, this precious time with family. Instead I've been moping around feeling sorry for myself, on the verge of tears for I don't know what reason.

My morning started off with a visit to my orthopedist, or more precisely, my orthopedist's nurse practitioner. I know a couple of other people who use this orthopedist, and they are not convinced he actually exists, because they have never actually seen him. LOL. I didn't realize what a rare event it was that he blessed me with his presence during my first appointment with him back in March. Fortunately, his NP, Shana, is fabulous; I like her a lot and trust her far more than pretty much any orthopedist I've ever met.

The orthopedic group is about as far away from my house as it can be without being in a different city, which made for a harrowing drive through the snow on icy roads this morning. It was probably not the best decision to go to the appointment, but the roads were not bad where I live, so I figured I'd be fine if I left plenty of time. It was only once I had gone about 10 miles north that the conditions got a bit hairy, and by that time I was halfway there, so I figured I might as well grin and bear it. Despite leaving 30 minutes to get to the appointment, I was 10 minutes late, so I was pretty stressed out by the time I got there, and wondering if I was even going to make it back home, as it continued to snow.

There were really no surprises during the visit. Being that she is very thorough, Shana noticed I had had a kazillion other tests run on me since we last met, so I gave her a brief synopsis of my cancer saga. Then she went over the MRI results from my left hip, and indeed, I have a 'degenerative labral tear' in that hip, too. Which essentially means that hip is on its way out as well. If I want a long-term fix to this, I need to have a periacetabular osteotomy followed by labral reconstruction on both freaking sides. She said that at this point, I would probably not even be a good candidate for a labral repair, at least not on my right side; I'd probably need a labral reconstruction, which involves taking tissue from a cadaver and making a new labrum. (!!!) So she re-referred me to Dr. Not Friendly, the doctor who does PAO surgery, and said that I should at least consult with him. But basically it would be something like this: PAO surgery on my right hip, followed by labral reconstruction a few weeks later. You have to be on crutches for, like, two months after the PAO, so you might as well fix the labrum (which requires one month on crutches) while you are at it. Repeat for the left side. That's a lot of freaking time on crutches and a lot of freaking surgeries. It's not possible to do any of them simultaneously because of the time that you would have to be under and the risk of blood clots, which is especially relevant to me given my history AND the fact that I'm on tamoxifen now.

Needless to say, my next question was, 'So if I do nothing, how much longer do I have before I can't walk at all?'

And this is the part that makes me cry. Instead of saying what I wanted her to say, which was Oh stop being a Drama Queen! We always have the option to manage this conservatively! she just looked me in the eye, and very apologetically said, 'I don't know.'

I don't know.

I pressed her more, 'Are we talking months? Years? Decades?'

I don't know, she repeated. There aren't enough data to know. She said my case was severe and complex, although I did have some things going for me - I'm not obese, I don't have diabetes, I don't smoke. Aside from the architecture of my bones, I don't have any risk factors for severe joint degeneration, so it was hard to say. But without actually saying so, she corroborated my worst fear - that if I do nothing, I will reach a point at some yet-to-be-determined time in the future where I really won't be able to walk. It's that bad.

I told her about my colleague's rapid decline and very sudden need for a hip replacement, and how that worried me. She said that usually in cases where people needed an 'emergency' hip replacement, they have arthritis, and I don't have arthritis (which is apparently some kind of miracle, according to what the orthopedist told me at my last visit). And while on the topic of hip replacements, she did also say that having the PAO surgery and labral reconstruction would not necessarily preclude the need for hip replacements later.

Awesome.

We did talk about conservative, non-surgical options, and while she was sympathetic to me not being up for any major surgeries anytime soon, she did not hide the fact that she did not see conservative options as a long-term, sustainable solution. However, she did agree to give me a prescription for meloxicam, which has helped me some in the past, and said if I wanted to make an appointment for a cortisone injection, I could do that, too.

Shana was also very concerned about the mass in my uterus that no one else seems to care about, and said that I really need to have a pelvic ultrasound, which I know. It's on my list. Yesterday I went so far as going to the web site of the OB/GYN practice that Dr. L recommended to me. It is a husband-wife practice, but I didn't like the looks of the woman (seriously, if you can't smile for a picture that you are going to post on the web advertising your services examining girl parts, it freaks even the non-smiley of us out) and male OB/GYNs creep me out. So there you go. Shana said she knew of a few new OB/GYNs in town 'who are supposed to be good,' and said she would refer me to one of them. After I got home, her assistant called me with the information and said that they would actually be contacting me to set up the pelvic ultrasound. I guess that is one way to get it done. LOL. How funny it took an orthopedic person to push this on me. Of course I promptly Googled the doctor Shana suggested, and it turns out that he is actually a gynecologic oncologist and is part of the same cancer center as my medical oncologist. I didn't know we actually had those specialists in my town, but I have to admit it does seem like a good choice for this particular problem, so I will try to get over the fact that male OB/GYNs are creepy, be a good girl, and go in for my ultrasound so I can get even more bad news.

Who knows, maybe all this hip nonsense will end up being a moot point. Please excuse all of the self-pity, but I'm going to sign off and go have a good cry.

Back to My Hips

Yeah, remember my hip problems? Why this blog is called 39 and Hip? (On a side note, it should now be 41 and Hip.) Well, because I'm tired of writing about cancer, I'm going to post something about my hips.

They. are. killing. me.

Okay so not literally. (I'm pretty sure I've admonished myself previously for using that phrase because nonono, one cannot die from hip pain.) But seriously, my hips are terrible, terrible, terrible.

It all started with a road trip I took with my family that involved sitting in the car for 20+ hours over a period of four days. The trip also involved a fair amount of walking, which sadly also hurts my hips. I cannot win. Walking really hurts, but at least sitting hurts worse. LOL. Ever since the road trip almost a month ago, my hips have been bad news.

I've had it in the back of my mind that while I am not working and while I have free medical care (free as in 'free'), I should go back to my orthopedist and discuss possibilities for managing my hip pain, and at least find out the results of the arthrogram I had on my left hip back in April. Not surprisingly, I didn't get around to it because even after all this, making doctor's appointments still induces high blood pressure.

But. I have a colleague who also has hip problems due to hip dysplasia. This colleague is only a few years older than I am, and her younger sister has already had both hips replaced, so she gets it. We exchange sad hip stories and gripe about our orthopedists a lot. It is nice to have someone who realizes just how much a cortisone shot in the hip can hurt and how distressing having such severe hip problems at a young age is. Apparently while I've been wrapped up in my cancer saga, her hip got really bad really fast, and now she is having a hip replacement December 1st, which she told me about last night.

I then proceeded to have a nightmare about having a hip replacement, and woke up all confused until I realized Phew! I'm not the one having a hip replacement! However, my relief was immediately followed by But dammit my hips really ARE killing me! &*%#!

All this to say that I finally made an appointment to see my orthopedist. Tomorrow. Because, yeah, bad hips cause more pain than cancer, even though cancer really can kill you.

A Photographic Journey

Since I'm not teaching, I'm trying to get a jump start on things that I'm normally not all that good about doing in a timely manner, like working on our Christmas cards. This has involved going through all my photos from the year. Let me just say that there's a dearth of Christmas card worthy photos from May on; however, I do have a lot of selfies I took with my phone. LOL. I decided to make a random compilation of photos that I may add to from time to time. 

It is here: http://39andhip.blogspot.com/p/a-photographic-journey.html

Sweating the Small Stuff

I had book club on Thursday night, and nine of us went through nine bottles of wine. The only reason I'm including this is to set the stage for Friday, when I had to get up and go to physical therapy and then drive 60 miles to go see Dr. T. OMG I was so not in the mood for anything but lying in bed and sleeping. I saw a book club friend at an event on Friday night and she told me, 'Ugh - I think I'm still hung over!' I joked, 'I think I might actually still be drunk.' LOL. Jesus Christ, I have no idea what we were thinking.

Yeah so anyway, needless to say, I was not myself at my appointment with Dr. T. He brought in his laptop to show me pictures from my surgery (my request*) and while I had promised not to throw up, it was a harder promise to keep than I had imagined, haha. It had nothing to do with the pictures, though. ;-)

* At BRA Day, I asked Dr. T why exactly my surgery was so complicated and anxiety-inducing. He said the complicated part was that he had to use such a large area of my abdomen with just one blood vessel. Then he pulled out his phone, as if he were going to show me the pictures, and was like, 'Oh, I don't have the pictures on my phone.' That was sort of a relief, because, uh, that would have been weird.

After we looked at the pictures, which was really an experience, he showed me pictures of his kids playing soccer and we had a long conversation about soccer and sports and how my daughter, ironically, doesn't have an athletic ounce of tissue in her body. Then he went and got his 'chaperone' for my exam.

Everything is fine. It is not great, but it's fine. I knew this. Highlights:

• My nipple made it, but as Dr. T pointed out, 'It's angry.' It's actually more like it is humiliated, in my opinion, which on a normal day I would have pointed out, only due to my wicked hangover I just sat there moaning to myself OMG I want to go hooooooome. My nipple is deflated, flat as a pancake. Whatever. I'm just happy to have a nipple that isn't a tattoo, and I went into the surgery fully expecting that my nipple wouldn't make it, so having one at all is bonus. 
• My nipples are uneven, mainly because my natural breast sags a little and my foob ( = fake boob) does not. 
• My foob is significantly larger than my right boob. We've known this all along, but it didn't prevent a rather humorous exchange in which Dr. T remarked, 'You're bigger on the left side' and I replied, 'Yeah, I know' in a tone that implied Of course I am - YOU made it that way! He smiled, because he understood what I meant, and explained that sometimes some of the tissue doesn't survive, so it is hard to know at the time of surgery how much to put in. As I recall him telling me right after the surgery, it's better to put more tissue in and take it out later than to not put it in and then later be like, 'Sorry, it's in the trash can.' (Yes, he really said that. Sorry, it's in the trash can.) Also, to be fair, my left side swelled quite a bit due to the seroma I developed after my re-excision surgery, so it was bigger by the time I met Dr. T. For all he knew, I had always been that way.
• My foob is very hard. It's like a coconut. Dr. T said it will get softer. I looked at him suspiciously, and he said, 'I promise.' 
• My third rib is very sore, and sticks out. I was convinced Dr. T had broken it when he removed the cartilage to get to my internal thoracic artery, although he assured me at the last appointment that he did not. (Of course.) Dr. T said it wasn't that the rib was actually sticking out more than it should; it just looks more prominent because I have breast tissue over my ribs on my right side, and none on my left. My physical therapist had observed the same, but told me to check with Dr. T anyway, because the rib does hurt a little. 
• I have some lumps in my abdomen around my scar, which Dr. T said are probably scar tissue. Oh, and my belly button is slightly off center, which I did not point out, because... you know, the hangover. Zombie. All that.

I guess the biggest question mark is what, if anything, we are going to do about these things. They are minor things. As Dr. T asked, 'How do you feel when you're in a bra? That's the important thing.' And I feel fine in a bra, normal. I think I might even feel fine in a swim suit. I don't think about the surgery much anymore except at night, when I'm putting cocoa butter on my scars and marveling at how maimed I look. The thought of another surgery is pretty unpalatable to me at this point.

On the other hand, this was a lot to go through for a less-than-perfect end result. Not that the end result was ever going to be perfect, but in a way I feel like what is one more minor surgery in the large scheme of things? After all of this, if my nipples could be even, why wouldn't I want them to be? And since I met my out of pocket maximum with my first surgery, anything I do between now and December 31st is 'free.' Dr. T said this is why he never travels in December - besides the fact that with his kids' soccer schedules, he and his wife never have time to travel for anything other than soccer tournaments.

Dr. T didn't push more surgery on me. We talked about how I am tired of surgery and how my husband is tired of taking care of me and thinks I look fine, and he totally understood. He did say that it would be very minor, outpatient, and we could even do it in the surgery center at the clinic. I wouldn't even have to go to University Hospital. He would just take a little tissue out of my foob, and transplant some fat to the area around my rib to make it softer. 'Your husband just has to drive you, that's all,' he said with a grin. 'It will take me an hour and a half.' In the end, he told me to think about it, talk to my husband, and let him know. Then he added, 'You have my e-mail, and my cell number. E-mail me, call me, whatever.'

In the meantime, Dr. T said I should start massaging my abdominal scar to try to break up some of the scar tissue. He said that I could start stretching my abdomen, but that he still didn't want me doing any exercises like sit-ups until 12 weeks post-op. However, my incisions are completely healed, so it's okay for me to go swimming. (I had asked him about swimming, but didn't tell him I really just want to sit in the hot tub. Same diff. LOL.)

After he left the room, I took forever getting dressed, because of the hangover, and because I had to psych myself up for a 60-mile drive through lots o' traffic. So I was embarrassed when I came out of the room and found that Dr. T was waiting for me. He came down the hall with his laptop and said, 'Wait! I wanted to show you this video.' It was a video of him reattaching blood vessels during surgery - not mine, but, 'It's the exact same thing I did during your surgery.' I had to admit that I had already seen how it was done on a video of a DIEP reconstruction that I watched on OR Live, but it was cute that he wanted to show me. And it is honestly quite mind-boggling, all of it. And when I see in graphic detail everything that my body has been through, I'm in awe of the surgeons who have the ability to do this, and I'm in awe of my body's ability to heal itself.

So.

I am leaning toward just doing one final surgery, but... I don't know. It's sort of like it was with my hip surgery - in the end, I decided to do it because I didn't think I could live with my hip the way it was for the rest of my life. I am satisfied right now, but what if I change my mind in a few years? I should just do it now, while I'm at it. At the same time, five surgeries. FIVE SURGERIES, people! Jesus H, when is enough enough? Ugh.

I'm so tired of making all these damn decisions. Seriously, my parents and brothers are trying to make plans for all of us to meet the week after Christmas, because we were supposed to meet over the summer and didn't because of all this cancer shit. My brother keeps asking for input on where we want to meet, where we want to stay, etc., and I'm like JUST TELL ME WHERE TO BE AND WHEN! Ahhhhhh!

What should I do? Someone just tell me, please.

DIEP Reconstruction Aftermath: 8 Weeks

Probably the most notable thing about 8 weeks post-reconstruction is that I basically have no restrictions on my activity. I can work toward regaining full strength and function as tolerated. Before, I wasn't allowed to do any exercises involving my core (e.g., sit-ups, crunches, etc.). Because I have a lot (A LOT) of work to do - I seriously cannot even sit up from a lying down position - I'm going to start going to physical therapy twice a week for the next few weeks.

Physical therapy has actually been super helpful. It is so very different from the pretty terrible PT experience I had when rehabbing my hip. I've only done two sessions - one per week - but I've been very diligent about doing my exercises at home, and in just two weeks I was able to regain significant range of motion in my arm. I still have a lot of pain, especially in my shoulder and pectoralis muscle, but my overall function is just so much better than it was before, so I'm pretty thrilled. I am not looking forward to trying to rehab my formerly sliced open abdomen, as I have a feeling that's going to involve a lot more pain, but... eh. I can do it. Riiiiiiiiight.

My therapist has been very good about monitoring me for any signs of lymphedema, which is unfortunately a lifelong risk for me now, because I am missing lymph nodes. Fortunately I've escaped it so far, although I realize that it can rear its ugly head at any time down the road, and I need to be super vigilant about not getting any IVs in my left arm. (Honestly, I'm hoping I'm sort of done with the IV thing.) A sort of funny thing happened, though re: fluid building up. I had asked Dr. T about when I could stop wearing the abdominal binder, and he replied that I needed to wear it for 4-6 weeks. Ummmm, okay... is it 4 weeks or is it 6 weeks? There's a big difference, in my opinion. It's like clothes that are made for 8-10 year olds. WTF? But because I hated wearing the binder, and it was especially annoying after I started wearing real clothes again and trying to make myself presentable to go out in public, I pretty much stopped at 4 weeks, except around the house and while sleeping. It was a little weird to stop wearing it, because even though it was uncomfortable, I felt pretty naked without it after wearing it for so long. And it did offer some support/protection, and of course, the most important function was to prevent fluid from building up in my abdomen.

About a week after I stopped wearing the binder, I ordered a pair of pants online. I have a really hard time finding pants that fit, so I normally wouldn't do this, but it was a place I've bought many pants from, and I know what size to order, and the deal was too good to pass up. When the pants came, I tried putting them on, and they were sooooo tight, I was like OMG I HAVE TRUNCAL LYMPHEDEMA!! and freaked out. Later, I came to my senses and realized, nope, nope, I'm just getting fat. WHICH HELLO, should not come as any sort of surprise, seeing as how between my hips and cancer I've spent, like, two years on the couch (and let's be honest, it's not like I was a superstar fitness guru before that). 

Nevertheless, I asked my physical therapist about it, and she agreed to monitor my abdomen by taking weekly measurements, just to be certain it's bona fide weight gain and not fluid build up. (I'm not sure which one is worse, lol.) She also said that wearing the binder couldn't hurt, and suggested that if the binder was too uncomfortable, that I go out and buy some control-top undergarments made to compress the abdomen. That was actually a pretty brilliant suggestion, I thought, so I hit JC Penney immediately after PT, and was shocked by the number of undergarments designed to tame muffin tops. Who knew abdominal binders could be so sexy? I might just keep wearing my new undies indefinitely. Ha.

In other news, I've been taking tamoxifen for 22 days, and I am still fine! I've had a bit of weirdness with chills and some hot flashes, but my morning sickness is gone, and I'm still sleeping pretty well. I have physical therapy tomorrow and Friday of this week, and on Friday I also have a post-op appointment with Dr. T. I know he is going to propose doing a revision surgery, and I'm not at all sure how I feel about that. I guess I will at least hear him out and then reflect on it for a bit. Things are just so good right now, why mess with them? On the other hand... well, let's just say the other hand is overloaded.

Let me tell you about Halloween in my neighborhood.

As an adult, I've never enjoyed Halloween. I outgrew my love of Halloween around middle school, some 25+ years ago. But now I live in a neighborhood where Halloween is absolute over-the-top insanity, and you really have no choice but to get into it, or leave town for pretty much the entire month of October.

There are thousands upon thousands of trick-or-treaters who come from all over the town to trick-or-treat in the neighborhood, and Halloween night is very much like a big carnival. Every year there is some sort of unofficial contest to see who can come up with the best decorations. Here are few examples from around the neighborhood.

This house was on the local news last year. They were filming right as we trick-or-treated, and my son, who was dressed up as Queen Elsa, walked right past the camera. People were giving me a hard time about the possibility of my son appearing on Fox News in a dress.  LOL.

This is my good friend's house - the forbidden forest from Harry Potter. We were walking home from my parents' house a few weeks ago, and my daughter wanted to take the long route home just so we could walk through the forest. Her husband was out working on it when we passed through.

This is a new display this year, and I think it's one of my favorites.

Even if you're too young to remember Thriller, the zombies coming out of the ground are cool. My son likes it.

A few weeks before Halloween, random 'booing' starts. This is when someone rings your doorbell and leaves you candy. (To clarify, 'you' = my daughter.) This one happened after my daughter was already in bed, so I took a picture of it for her because I didn't want to leave the candy on the porch all night.

I got more into Halloween this year, just because. Why not? By 'got more into it,' I mean that I let my husband go crazy without rolling my eyes every time he came home from Kmart with a new tacky decoration. However, I did decide to throw a pre-trick-or-treating party. Our friends started the tradition of 'soup night' years ago, and we used to enjoy going to their house for soup before trick-or-treating. Unfortunately, they moved out of the neighborhood, and I figured that someone should carry on the tradition. So I spent most of Friday and Saturday cleaning and cooking, and preparing my house to be invaded by 30+ people. Here are a few pictures, simply because my house has not been this clean and a very, very, VERY long time.

      

I had so much fun cleaning and cooking, even though even the most low-key parties are always a ton of work (and money!). In reflecting on it, I think it's because it was the most normal I have felt in over five months. It's the first real, get down on my hands and knees cleaning I've done in, like, forever. And I LOVED it. Cleaning and cooking and worrying about how all these people are going to fit into my house just made me feel like my life is normal again. There is a normal life to be lived past cancer. For two days, I hardly thought about cancer or surgery or what body parts were hurting. I just put my head down and scrubbed the toilet and scrubbed potatoes and stirred the soup. It was an amazing feeling.

When I was at BRA Day, one of the other patients who gave a talk was diagnosed with breast cancer when she was pregnant, and had a double mastectomy at 31 weeks pregnant. She had to wait until after the baby was born to do reconstruction, because being under that long might be bad for the baby. But one of things she said really stuck with me, and that is that she knew the reconstruction was a success because she never even thinks about it anymore. And I find myself having more and more days like this - where there is a good portion of the day where I just don't think about any of this stuff anymore. I just clean and cook and manage my kids and give out candy. It's a good feeling.

I think it might have been the best Halloween ever.

Being Ellie

My husband and I had our parent-teacher conference today for our daughter, who is in fourth grade. I have to admit this was the first time I've actually met my daughter's teacher, which pretty much makes me the Worst Mom Ever in the history of my daughter's school, which I'll call Helicopter Parent Elementary (HPE). But, you know, I HAVE CANCER, PEOPLE! LOL.

Anyway, I had no idea what to expect. I have no idea how my daughter is doing in school. And it's fourth grade, so I don't care that much. I care enough to occasionally scream at her when she doesn't get something that she should get, or when she tells us at 9 PM that she has to create a salt dough map of our state for school tomorrow. But other than that, I know nothing. And in fairness to myself, I was pretty laid up until a few weeks ago. I'm too lazy to be a helicopter parent, but I'm not normally this clueless. I got the feeling my daughter's teacher knew why I had been so MIA, because she asked me a few too many times, with a lot of interest, how I was doing.

And no matter how clueless I am about my daughter's academic achievements, I'm pretty in tune with her strengths and weaknesses in general. If you know me, you know I spend a lot of time lamenting that God cursed me with a daughter who is the exact opposite of me. This is not necessarily a bad thing for her, because I have a lot of bad qualities I wouldn't wish on anyone, but it does create constant tension between us, because I do not understand this alien being who is 50% me but yet Not Me in every possible way, good or bad.

Thus, I was fairly relieved when my daughter's teacher started off with how much she LOVES Ellie. Yes, she needs to work on organization and neatness and focus, but overall she is doing fine. This is pretty much how all our conferences go. We chatted a bit about academic stuff, then eventually the teacher asked us if we had any questions. I entered the dreaded territory of asking how my daughter was doing socially. Her teacher paused, then said she thought she was doing fine. But then added, 'Unless she's telling you something I don't know.' I replied that Ellie never said anything, which in a way worries me, because she is very oblivious to a lot of things that I feel she should notice. I said that from a parenting standpoint, it is easy to have a daughter who is fairly clueless, but that I also understand that can't work forever. I worry about the day when she does get a clue. Her teacher replied in just the right way - not an overly assuring Oh no! She's FINE! way, but in a realistic, thoughtful way. She said, 'There are a lot of issues in the class, especially with the girls... but... Ellie really doesn't do drama.' Then she added, 'It's really interesting because everyone in the class is really protective of her. She's really nice to everyone, and it seems like everyone likes her.' She said this in a way that implied that it was really a respect thing, and not an I feel sorry for you thing. But she also sounded surprised by it - like... How can this be? It's weird. Yet it is.

I keep thinking of this: Ellie really doesn't do drama. WTF? WHO IS THIS CHILD? It seems like everyone likes her? Are you sure you are talking about the same person who lives with me?! And it struck me that after being inspired by all the amazing people who have rallied around me in the past few months, that perhaps I could learn a lesson or two from my own daughter, who doesn't do drama. After talking a bit more with her teacher about it, her teacher said that while she thought Ellie was fairly naive, she wasn't totally clueless. So her 'not doing drama' wasn't 100% because she didn't even know it was there. She just... doesn't do drama.

It is hard to know how to feel about this. On the one hand, you hope your child will be upset when you tell her have cancer, and that this is a serious thing. On the other hand, you're happy when none of it seems to faze her, the same way she was okay when our cat was run over by a truck or when our chickens were gutted by raccoons. After my surgery, she was okay not knowing who was going to pick her up from school for over a month, and she took going home with random classmates in stride. I never have to worry about her throwing a fit if I forget to pack her a lunch on the day of a school field trip when they can't buy lunch, or if I'm not feeling good enough to go watch her at her running meets, or if the tooth fairy forgets to come. Because she just... doesn't do drama.

It struck me during the conference that I don't want to do drama, either. I feel like I've been a drama queen for the past five months since my diagnosis, and I'm done with it. I hate being emotional and feeling sorry for myself and crying and I dunno, all that other dramatic stuff that comes with cancer. I just want to be the person who is nice to everyone that everyone likes and protects - someone more like my daughter, and less like me. I'll add it to my self-improvement 'to do' list.

A Touchy Subject

While I'm on work hiatus, I've vowed to do some work in the elusive self-improvement area. Somehow the BACK OFF! I'M BUSY! I HAVE A FULL TIME JOB AND TWO YOUNG KIDS AND CANCER! card doesn't work when you don't have a job. Plus, being surrounded by so many excellent people inspires me to be less mediocre, so I am motivated.

Of course, self-improvement encompasses many things, because there's not an ounce of myself that couldn't be better. The projects are practically limitless. But one thing I've been focusing on is my professional life which is, quite frankly, slightly pathetic. I used to blog about it, but then the I HAVE A FULL TIME JOB AND TWO YOUNG KIDS thing reared its ugly head, and spending time blogging about how pathetic you are is a pathetic thing to do when you could be using that time to make yourself less pathetic.

Anyhoo. I have a 'to do' list of things I want to accomplish while I am free from my teaching duties, which I now realize is insanely ambitious and not do-able, but that's sort of the story of my life. However, one of my goals is to finish what I started back in January, and become a certified EMT. At this point in my life, I'm not sure if I'll ever use this credential in any sort of professional manner, but I am a finish what I start kind of gal. I already completed the EMT course and passed my practical exams (and god it was hard for me, which I wrote about here and here), so all I need to do is to pass the national registry exam. This should be the easy part for me. And I just feel like after all that time I put into the class, I should be certified.

I remember talking about the steps to become certified in my class, and it's a lot more complicated than it should be, and all that is just a world away from where I am now. So a few weeks ago, I finally decided to wade through all of the bureaucracy and apply for certification. Now I have a definite date that I can sit for the national registry exam, and that is November 10th. Thus, I've been half-heartedly trying to study for the exam, without much luck. I mean, hello, I HAVE TWO YOUNG KIDS AND CANCER! Ha.

Oh and geez, that is one super long introduction to the topic that actually inspired this entry, which is the topic of touching. Let me just say, I'm not a touchy person. Physical contact makes me uncomfortable, which makes breast cancer a bitch, yo. So many random people looking at and touching your boobs all. the. freaking. time. is not cool. Fortunately, after two kids, I've sort of overcome some of my issues, or whatever. Meaning, I don't freak out when someone touches me. But still, IT'S NOT NORMAL AND I DON'T LIKE IT!

And what does any of this have to do with studying for my EMT exam? I was thinking about this the other day as I came across a practice question that went something like this:

An EMT should do all of the following EXCEPT

a. make good eye contact with a patient.
b. put a hand on the patient's shoulder to calm and reassure her.
c. tell the patient not to worry because she is going to be fine.
d. explain to the patient what is happening.

For me, 'b' is like NO, just NO. PUTTING A HAND ON A PATIENT'S SHOULDER DOESN'T CALM HER! Never ever touch a person unless you ask them first! OMG!! Except that for most people, the hand on the shoulder trick is a-okay, and apparently I am a freak, and the correct answer is 'c', because sometimes patients should be worried and everything is NOT going to be fine, which I get. But I disagree that physical contact with a patient will calm her - not to mention you can get sued. (I can tell you a true story about this.)

This question actually brought back a memory from my last visit with Dr. T - details I had never really thought about until just then. Until my last visit, my husband had been with me for every appointment. However, since my mom took me to my last appointment, I was alone in the exam room. When Dr. T came in, we had a brief conversation, then he told me he was going to get his nurse before he examined me, which was new. I really didn't think about it until much later, when I realized it was only because my husband wasn't with me. Apparently Dr. T needed someone else in the room to verify that he wasn't being inappropriate, in the event that I should suddenly decide that having a strange man touch my breasts and abdomen is not okay. (For the record, it's really not okay, but you have to get over it, and having someone else in the room to witness it doesn't make it any more okay.) Reflecting on it later, I was sort of offended Dr. T didn't trust me, but my husband assured me that it wasn't about me; it was standard.

The weird thing is that I have a specific memory of having a freak out while Dr. T was looking at my nipple. (I mean seriously, nipple grossness is pretty freaking embarrassing.) And I must have been in typical Waning freak out mode, because I remember that he asked me to lie back, then HE PUT HIS HAND ON MY SHOULDER, and his other hand on my arm and told me everything was going to be fine. LOL. (That's only a no-no if everything isn't going to be fine.) I wouldn't say he exactly calmed me down - it's more like he was holding me down, or at least making me aware of the fact that I was wiggling around too much, because it's embarrassing to have your gooey, bleeding nipple inspected. Nevertheless, it's interesting that I remember this. Like... dude, this guy has seen me naked, taken pictures of me naked, pinched the fat on every part of my body, felt my breasts regularly, and yet, him putting a hand on my shoulder to calm me is what I remember. I wonder if it's something they teach in med school in addition to EMT class - put your hand on the patient's shoulder to calm her. It definitely seemed personal - too personal almost. Which is ridiculous, I know. You can touch my boobs, but please keep your hand off my shoulder. It's like the prostitutes in the movie Pretty Woman - sex is okay, but kissing is a no-no. Too personal.

I mentioned in my post about BRA Day that there was another woman there who was super emo who kept hugging me and hugging Dr. T, which made me wonder if this is the way I am supposed to be. I mean, I've never gotten touchy with a doctor before, but then again, I've never had cancer before, either. Now that I think about it, Dr. L is sort of touchy, too - hugging me and putting her arm around me a lot. Putting her hand on my shoulder to calm me. Ick. LOL. When I was a kid, my mom had to give me hugging lessons because I did gymnastics, which is a very huggy sport, and she said I looked stupid when I finished a routine and everyone tried to hug me and I just stood there. (In college, I started diving, which worked better for me because people are less inclined to hug you when you're all wet.) Maybe it's time to re-visit this issue. I'll add it to my 'to do' list for self-improvement: must increase physical contact with others. Must learn how to put a hand on someone's shoulder to calm her.

DIEP Reconstruction Aftermath: 7 Weeks

It's hard to say whether there has been no improvement in the past week, or if my expectations are just getting higher. I still feel good, but not stellar. In some ways, I feel like certain things are getting worse, like itching in my abdominal scar and the pain in the rib that Dr. T messed with. Also, after lots and lots of sitting - first on a road trip involving 20 hours in the car over a period of three days, followed by deciding to go back to work - I've learned a couple things. First, sitting is really bad for my abdominal tightness; I'm pretty sure the tightness is worse than a week ago. Second, my hips (remember my hips?!) are still a problem in a bad way. Oh my God. I don't actually have the energy to whine about this right now, because I've basically spent the past few days in misery, feeling sorry for myself, and I'm done for now. But seriously, oh my God.

So to make a long story short, I'm pretty much where I was a week ago except my hips are killing me.

I'm also still adjusting to taking tamoxifen, which makes me tired if I take it in the morning, and gives me morning sickness if I take it at night. Before experimenting with anti-nausea medications, I decided to try taking the tamoxifen at yet another time. I'm now on day 3 of taking it at 4:30 PM, and that actually seems to be better so far. Minimal fatigue, minimal hot flashes, minimal nausea. According to my husband, I toss the covers off in the middle of the night and take off my pajamas, then get cold and steal the comforter back from him, but as long as I can do it in my sleep, it doesn't bother me. :) Along the same lines, I am thrilled that my insomnia is pretty much gone, or at least back to my pre-cancer levels. I've been about a week without a sleeping pill or melatonin, and I've been sleeping great. I did take half of a hydrocodone for the past few nights, but that was truly because of pain and not cheating for sleeping.

Overall, I feel good, but not great. I'm a little disappointed in the lack of progress because I was hoping to feel STELLAR by now, and I definitely don't. On the upside, I am in a good place emotionally. I at least feel very even-keeled, which is practically a miracle for me. I continue to feel blessed by the goodness that surrounds me, and I have really been trying to focus on that.

The Wrong Type of Leave

I went up to work today, because. Because I'm going to start going to work again, because. Because a lot of reasons. Self-improvement, yada yada. Unfortunately, I think all these surgeries have killed some brain cells, because man, I am slooooooooow.

Anyway, I left work in August with an impending fiasco that almost made me excited for my mastectomy. LOL. The details aren't important, but they center around a digital textbook that has basically been a nightmare, and has almost cost me a few friendships within the department, because there is constant tension about said nightmarish digital textbook.

I returned to discover that the situation has barely improved since I left; in fact, it may have gotten even more complicated. And my mind can't handle complicated right now. (I'll play the surgery card all that I have to considering I don't even have to be up at work if I don't want to be.) I sent off a few e-mails about the textbook situation to our textbook rep, as well as the guy who does the tech stuff, who immediately called me. The conversation started off like this:

Him: How's your baby?
Me: Ummmm... huh?
Him: I thought you were on maternity leave.
Me: No, I WISH. Pause. I was on medical leave.
Him (sheepishly): Oh gosh, I'm sorry! I don't know why you I thought you were having another baby!

I let him stutter around and feel uncomfortable because I was actually a bit ticked off, because his textbook stinks and the customer support sucks dog testes. I found myself enjoying playing the mysterious medical problem card a little too much. And it's true, even though I'm a die-hard believer in ZPG, I would rather be having another baby than having breast cancer.

Of course, assuming that I'm on maternity leave is a reasonable assumption, as that would actually be normal, except that faculty at my school don't actually get any maternity leave, but that's a minor detail, LOL. Toward the end of summer, when I told people at work I was going to be on leave, I could see them eyeing my belly. It was kind of fun leaving them in suspense about what could possibly be wrong with me that I looked fine, yet knew I was going to be gone for six weeks (and didn't appear to be pregnant). This particular guy and I have never met in person - in fact, he's thousands of miles away - but it was still fun to play the cancer card. Without actually playing it, that is. More like just holding it in my hand and trying to make confusing poker faces.

What can I say, I have to entertain myself somehow. I mean, hello, I HAVE CANCER AND YOU SHOULD FEEL SORRY FOR ME!

Happy BRA Day

Alternative title to this post: Thank God that's done.

Apparently Wednesday really was BRA Day, as in there is an official 'Breast Reconstruction Awareness' Day. True story - try Googling it. Ummm, no comment.

So... I went up to University Hospital on Wednesday to go to what I knew would be a painfully bad BRA Day event. And as usual, I was right. LOL. (I repeat: WHAT WAS I THINKING?!) After getting out of town late because my daughter came home from school with pinkeye and had to get rushed in to see the doctor because we were heading out of town straight from my event, we spent nearly two hours in traffic. Although I had planned to be fashionably late, it's hard to know where 'fashionably late' for a two-hour event crosses the line into 'don't bother showing up' territory. Fortunately, if I crossed that line, then so did my plastic surgeon and, like, every other person involved in this god-awful event, because when I arrived shortly after 6 PM, there were approximately five other people there. Okay, maybe 10 or 15, but that's counting the people in charge of food and drink and check-in. (Hey, at least there was food and drink!) But I was seriously cursing Dr. T at that point, because he knows I live 1-2 hours away - and definitely closer to two when we are talking about an event that starts at 5:30 - and was thinking it was quite a lot to ask of me if he himself couldn't be bothered enough to show up.

Around 6:30, the plastic surgeons started to trickle in, probably because that's when they were supposed to start giving talks and introducing their patient suckers speakers. I mean, I get that they were all in surgery, blah blah blah, but then, dude, JUST GIVE UP ON THE BRA DAY EVENT!! I mean, it's not like refusing to celebrate Martin Luther King Jr's birthday for gosh sake. Dr. T was scheduled to give a talk at 6:50, for which he was late, which was excused with a He is late because he is busy actually DOING breast reconstruction right now. Which I get, of course. Breast reconstruction takes a long freaking time, which I know, because I went under around 8 in the morning and came to around 9:30 at night, and Dr. T was there, and I remember that he was there, and it meant a lot to me that he was. And if he hadn't been there or had rushed off because he had to go give a talk at some f-ing 'awareness' event, I would have been pissed. Okay so maybe not, I'm not sure I was with it enough to be pissed off, but I did appreciate that he was there when I woke up (so much that I actually gave his wife a thank-you present, but that's a different story). So I get it. And I have no idea of where the idea for doing such an event came from, but I'll venture a guess and say that I doubt it came from anyone who was actually at the event. Gaaaaaaah! It was one of those events where you don't know whether to feel sorry for yourself for being a big enough sucker to be there, or for the organizers of the event, that they couldn't sucker more people into being there.

Anyway, three plastic surgeons gave talks, and each one who gave a talk also had a patient give a talk in conjunction with his/her talk. The surgeons' talks were pretty uninspired, with an air of OMG IT'S 7 PM AND WANT TO GO HOOOOOOME! but the patient testimonials were more interesting. And to be totally fair, I have to say that chatting with a few of the other patients made the 1.5 hours I was there bearable. I've never talked to other breast cancer patients in person before.

At any rate, for what it is worth, here is how I summed up five months of turmoil into a five-minute talk:

I took sort of a backwards path to reconstruction. I pretty much figured everything out on my own, then bullied Dr. T into doing what I wanted (or so he says). My story goes something like this: I initially had a lumpectomy, but one of the margins was very close, so my surgeon wanted to do a re-excision. But she was so confident the re-excision would take care of things that we scheduled it around both her upcoming vacation and my upcoming vacation, with the plan being re-excision, vacation, then radiation. We didn’t even talk about other possibilities. So needless to say, I was pretty shocked when I found out I had three positive margins after the re-excision. Naturally I freaked out, and my surgeon was on vacation, and I was leaving in three days.

In a panic, I met with both my radiation oncologist and my medical oncologist, both of whom counseled me to have a mastectomy. But I didn’t want to believe it, so I decided to keep shopping for opinions until I found a doctor who would tell me what I wanted to hear. So I called UH and set up a consultation for as soon as I got back from vacation. Then I left town for two weeks.

Of course, a few days into my vacation, my surgeon called me and said she agreed with all of my other doctors; I needed a mastectomy. So I spent the first week of vacation crying and feeling sorry for myself. Once I got the self-pity out of my system, I started consulting with Dr. Google about my options. I knew nothing when I started, as a mastectomy wasn’t even on my radar originally.

It didn’t take me long to figure out that I didn’t want an implant. So many people have asked me about this, and I have to admit I don’t have a good reason for this other than I just don’t (and you can’t make me). So that left me with flap reconstruction or no reconstruction. And since I was making this decision on the beach, surrounded by women in bikinis, it wasn’t an environment conducive to deciding against reconstruction. So I spent the second week of vacation eating a lot of fattening foods, drinking a lot of beer, and researching places in the U.S. that did DIEP reconstruction on women my size.

When I got back, I came up to UH for a consultation with Dr. F, and of course she recommended a mastectomy, which I had accepted by then. Dr. F said I would feel better if I met with a plastic surgeon, and called over to plastic surgery. As luck would have it, Dr. T was able to come over within an hour. I was a little nervous about meeting a plastic surgeon, but he wasn’t at all creepy like I was expecting. And even more important than not being creepy, when he asked me why I didn’t want an implant, and I told him I just don’t (and you can’t make me), that was okay with him. So then he said, ‘So tell me what you want.’

I told him I wanted to do a mastectomy with flap reconstruction, then waited for him to tell me that he couldn’t. But he didn’t. But he did stare at me for a long time, and pinch all my fat. Then he told me it wouldn’t be easy, but that he could figure out a way to do it. It would be a process, and I had to give him an entire year before I would be allowed to get mad at him. I’m sure that answer wouldn’t work for most people, but for me, it was exactly what I wanted to hear. It reminded me of when I was buying ski boots last year. The saleswoman told me it was like shopping for a wedding dress; you know when you’ve found the right ones, and you don’t need to keep looking. I think it’s the same with breast reconstruction. Regardless of what decision you make, you’ll know when things are right.

And I’ll be honest – it wasn’t easy. There were a lot of bumps in the road between the time we met in July and when I finally had the reconstruction done in September, but the important thing is that I got what I wanted in the end. It has been six weeks now, and I feel great. I just hope Dr. T isn’t too traumatized from having to put up with me, but one thing I’ve learned about myself in the past few months is that I’m willing to be annoying to get my way when it’s something this big. So for me, the end justifies the means, because the end is something I have to live with for the rest of my life, and I hope that’s a long time.

I think it went... fine. I mean, whatever. This is coming from a person who lectures to a room full of apathetic students on a daily basis, so it wasn't much worse than that. LOL. And the parts of the talk that were supposed to be funny were interpreted as funny, like the part about Dr. T not being creepy, and the part where I'm a bully. Dr. T actually started off his talk with Waning is right; she DID bully me into doing what she wanted. But like all the women in my life, she was right.

Yeah, so there.

After my talk, I did have a decent conversation with Dr. T, as well as with another patient of his he suckered into attending. She was actually a super sweet woman, who got an implant eight years ago, which then got infected. Like me, she only met Dr. T through chance; she went into the ER for her infection, and he happened to be on call. So she ended up ditching the implant and doing DIEP reconstruction on July 23rd. She kept hugging me and crying and telling me how inspirational I was for being brave enough to talk about my experience just six weeks after surgery, which was super sweet, but since I'm totally not emotional like that, it freaked me out. She actually asked me at one point, 'Don't you ever get emotional about all of this?' and while I tried to figure out how to explain my 40-year-long history of not being emotional in a few sentences, I decided it was easier just to say, 'No. Not really.' Meanwhile, she kept hugging Dr. T, too, which freaked me out more because I was thinking to myself, Am I supposed to be hugging Dr. T? Is that what normal patients do? Does he think I'm not emotional about any of this because I haven't hugged him? I didn't know you were supposed to/allowed to hug doctors. I think Dr. L was the first doctor I've ever hugged, and I feel like she's the one who started it. In fact, I'm sure she did. I do not hug people unless I'm attacked first.

So overall, it was... okay... I guess. But man was I happy when, around 7:15, my husband texted me to tell me that he and the kids were ready to pick me up whenever I was done. I figured I had stayed long enough that I could excuse myself gracefully. When I told Dr. T and his surgeon friends that my ride was there, Dr. T told me that he would walk me out, which was nice, but also kind of sucked, because I was getting ready to get into the car and drive a few hours, and I kind of needed to pee. But going to the bathroom while your surgeon is walking you out of the building just isn't cool, so... I didn't. On the way out, Dr. T semi apologized for the event - lack of participation and blah blah blah - and thanked me for coming such a long way for it. I didn't know exactly what to say, so I just said, 'Well, I wouldn't do it for just anyone.' Which is true - I do feel that Dr. T and I have a very special relationship that I'm unlikely to ever have with any other doctor, ever. (And it's not because he is hot, dudes. I seriously spent the whole evening trying to see him as hot, and he totally is not, no matter what those of you who know who he is say.) I'm honestly not sure what the connection is, but it is there, and it's a good thing. I think part of it is because I'm an academic, and the academic part of Dr. T's job seems really important to him, so in those regards, he sees me more like a peer than a patient. He told me that he was really looking forward to his talk at my school in April, and that he was planning to spend the whole day in my town. He said he had arranged to meet with other doctors in my town on that same day to talk about some of the things they do at UH that can't be done in my town, one of which is Dr. L, but other than that, he would love to come meet with students or do... whatever.

I mean, this is not normal. I love this guy! The cynic in me is like, What am I missing here?! but then I realize I have the hard part of surgery behind me, so there's no ulterior motive in all of this. It's just... dumb luck, I guess. A religious person would chalk it up to 'all things happen for a reason,' but since I don't believe in that, I guess I'll just keep sallying forth, and being thankful the event is over. :)

DIEP Reconstruction Aftermath: 6 Weeks

The lyrics that keep flying through my head are It's the end of the world as we know it... and I feel fine! 

Okay, so maybe it isn't the end of the world as we know it, but it's at least the end of my world as I know it. And... I FEEL FINE! Like, really, I feel great! I'm not even sure if I feel great considering, you know, I have cancer and all that jazz, or I just feel legitimately great. It's probably somewhere in between. Whatever, I'll take it. Seriously, I was so depressed and so stressed out for so long that any time I have a feel-good period, I'll take it. And dude, I'm on a medication that I was afraid was going to make me suicidal or homicidal or at the very least make everyone around me want to kill me, but... like I said. I feel FINE! (And no one has killed me so far.) Maybe when you're a jerk to begin with, medication that makes normal people super jerkwady actually makes you a better person. Who knows?

At any rate, I am going on a road trip with my family tomorrow, after I go to the dreaded BRA Day event. I'm looking forward to it. Not the BRA Day event, but the road trip. It's one of those things that is pretty much happening just because I have cancer and am not working this semester. Yay cancer.

Other than the above blather, there is no reason for this post other than to say that six weeks post-DIEP, I feel really good, and really happy. 

Blame the Tamoxifen

I've mentioned before that I worry about being a hypochondriac, except I'm pretty sure I'm not because whenever I go to the doctor, I'm told I need surgery. Or that I'm going to have a baby. Nonetheless, my worry over being a hypochondriac translates into me not knowing if the symptoms I feel are real, or if they are part of my hypochondria.

Anyway, I started to take tamoxifen a week ago. I was pretty sure it would either kill me, or make me want to kill myself, but it hasn't been that bad. Really and truly, it hasn't. Unfortunately, I created some weird mind game within myself where I think I was blowing off any side effects as hypochondria, when there do actually seem to be some side effects, which I'm finally realizing are real.

My oncologist had told me to take it at different times of the day to see which one made the side effects the most tolerable. He said a lot of women like to take it in the morning so they have hot flashes during the day, rather than at night when they're trying to sleep. So that's what I did initially, because the last thing I need is another factor contributing to my already really bad insomnia. But, the hot flashes are not bad; in fact, I don't even know if they are real or not. Part of that could be that I'm always getting weird hot and cold flashes and feeling gross and unsettled, so maybe my hormones have always been fucked up, which could perhaps be why I have cancer. Just a thought.

One thing I do notice is that I. am. tired. As in... a lot more tired than I should be. Then again, I'm tired a lot, because I don't sleep well or enough and I stress excessively about everything. And I'm recovering from surgery, yada yada yada. Still, I feel like I shouldn't be so slothly. So I blame the tamoxifen for that. Because I can.

I asked people on breastcancer.org what time of the day they take their tamoxifen, and an overwhelming majority said at night, because of the fatigue issue. So sometime last week, I switched to taking it at night, while the kids are taking their nightly shower - so around 7:30ish. Doing this seems to help me sleep better ( = OMG, a miracle). Even if it is a placebo effect, who cares, right? Sleep is sleep, and I don't notice excessive fatigue during the day. At least, it's no worse than when I take the tamoxifen in the morning.

Unfortunately, taking the tamoxifen at night gives me morning sickness, for whatever reason. It seems kind of cruel considering I don't recall ever even having morning sickness when I was pregnant, so WTF? It took me a while to figure out that this is real, because the first time I took it at night, I also ate sushi and had several glasses of red wine, after not drinking much at all for quite some time. The next morning, I figured I was either hung over or it was bad sushi, or both. (Like tamoxifen, sushi is an easy target for blame, especially when you live in a landlocked state.) However, a few sushi- and drink-free days later, what do you know, I still wake up feeling nauseous. I feel like I am going to throw up, but I don't. It usually goes away by late morning, but it is not pleasant. It's somewhere in between mildly irritating and completely disruptive. Bleck.

So... starting Week 2 of Adventures in Hormone Disruption, I'm going to try taking the tamoxifen a bit earlier - perhaps with dinner. Since I KNOW it makes me tired, I'm a little worried about taking it too early. On the other hand, the nausea when I wake up every morning is annoying enough that I'm not sure I can live with it for another 9 years and 358 days. And so the adventure continues.

News Round-Up

Highlights:

• Because we haven't had enough surgery in this household this year, my husband had knee surgery on Wednesday to fix a torn meniscus. It was one of those things that needed to happen sooner or later, so... why wait? I guess? Of course, I'm the Queen of Waiting, and based on the way things have turned out for me, I'd recommend to everyone that they do the opposite of what I'd do. At any rate, the orthopedist said it was eight weeks between knee surgery and skiing, so it had to happen sometime soon if we wanted to go skiing as a family this year. And we do. And so it did.
• Wednesday and Thursday were a little rough, because I as I have mentioned before, I am a self-centered bitch, and I hate taking care of other people, even if said people have spent the past five months taking care of me. (Have I mentioned that I'm a self-centered bitch?) But... I managed. Yay, aren't you proud of me? And my husband is doing really well, and still loves me (or at least says he does). After all the shit we've gone through the past few months, this surgery was such a piece of cake, I wonder if he will even remember to mention it in our Christmas newsletter. 
• Speaking of orthopedists, my husband's experience with his orthopedist reminds me of why I can't stand orthopedists, and why I'm dreading the point in time in the future when I feel good enough to have to deal with my hips again (yeah, remember my hip problems?). As I told Dr. L, after dealing with such amazing cancer doctors, I'm pretty sure I will never be able to find an orthopedist who is anywhere close to acceptable. And unfortunately, my hips continue to be a problem, I just don't write about them anymore because I realize there's only so much whining my dear readers can take. And, there's only so much energy in one day that I can devote to OMG-I-AM-IN-PAAAAAIIIIIIINNNN-JUST-KILL-ME-NOOOOOW.
• Speaking of pain, I started physical therapy on Thursday, because I'd like to be able to, you know, use my left arm again at some point in time. I knew I had limited range of motion in my left arm, which started with my first surgery, but I really didn't know just how bad it was until I went to physical therapy. I mean, I'm right handed, and apparently I can live a fairly normal life with limited use of my left arm. However, the therapist gave me a few exercises to do at home, twice a day, and I already feel better. (Okay, so maybe it's psychological, but that has to count for something, right?) She said we would be able to do more once the restrictions on my 'core' ( = my abdomen) were lifted, at eight weeks. After that, I'll start doing PT twice a week and really start to kick some ass. (My words, not hers. Although she was better than the therapist I saw for my hip, she had the personality of, like, a pancake. But at least she seemed fairly competent.)
• At my last visit with Dr. T, I mentioned in passing that he had invited me to a 'BRA Day' event up at University Hospital. (BRA = Breast Reconstruction Awareness, isn't that cute? Not.) I'll be honest - when he was telling me about it, I wasn't really listening; I was mostly trying to keep a straight face and not roll my eyes. But later, I reconsidered. For one, the guy spent, like, two whole minutes telling me about this gig, and asking me to come. That's about the same amount of time we spent talking about my nipple. Second, between the time that he invited me to the BRA Day event and the time I left, he volunteered, totally out of the blue and on his own, to come down to my college and meet with students and give a talk. This is huge, yo. Seriously huge. Surgeons at his level don't do things like this unless you offer them a lot of money, which it's pretty obvious I don't have. And even if I did have money to offer for that sort of thing, it's still huge, because plenty of surgeons without his status can't even be bothered to give updates to loved ones after surgery, or return phone calls to answer questions after the fact (see points 1-3). This guy volunteered to take time away from his day, during which he does life-changing surgery and makes some ungodly amount of money, to drive no less than an hour each way, to come give a talk, meet with my students, whatever I wanted.
• I was supposedly supposed to get information about the event before I left, but somehow I didn't. I looked for information about it online, but couldn't find anything. Eventually, while I was e-mailing Dr. T with a few other questions, I asked him for information on the event, and also thanked him for meeting my mom. (I omitted the part about her thinking he is HOT.) He replied: Thanks for letting me meet your mother; it was my pleasure. (...) Attached is our Bra day flyer. Please join us if you can and if you'd like to speak about your experience, let me know.
• I wasn't quite sure how to respond, but I felt like the e-mail required a response, at least to keep his goodwill toward me alive, which was the whole point of me not totally blowing him off in the first place. But... speak about my experience? To whom? Does this involve modeling? Show and tell? Is this a formal event or an after-work event? Is there food? (There was VERY little info on the flyer.) I didn't want to pepper Dr. T with questions, so I replied in what I felt was a pretty non-committal yet please remember who I am kind of way: Thanks for the info. I think I can make it - and I'm happy to talk about my experience. Honestly, I didn't give it a lot of thought before I replied. I just figured... well, I don't know what I figured. I obviously didn't do enough figuring, because to my surprise, he replied almost immediately: Wonderful. I'll ask them to add you on as a patient testimonial. Thanks so much! That he responded so quickly and was thanking me so much made me realize I should have thought a little more before responding to the original e-mail.
• So now I'm ridiculously stressed out about this, of course. First, because I stress excessively about everything. Second, because there are some complicated logistics involved in this, and basically I will have to drive myself to the event and spend the evening there alone, which is pretty much my worst nightmare. I'm not that good in social situations to begin with, and in my opinion, a BRA Day event is pretty much a worst-case scenario as far as a social gathering can go. As far as my 'testimonial,' I'm supposed to talk for 5-7 minutes about 'my story.' On the one hand, it's hard to imagine telling 'my story' in 5-7 minutes. On the other hand, 5-7 minutes is not nothing. It's a lot longer than, 'Hello. My name is Waning, and I'm an alcoholic.' LOL. It's long enough that I need to, like, plan what I'm going to say, unless I want to sound like an idiot, which I do not. 
• I suppose I could fairly easily back out of this. I can think of a gazillion legitimate excuses right off the top of my head - and trust me, I've gone so far as composing e-mails with said excuses in them. But: A. I'm not that type of person. Even though I'm a self-centered bitch, I do follow through with the things I say I'm going to do. And I'm painfully honest; I'm not convinced I'm actually capable of lying, even in a premeditated e-mail. And B. In between the time that I agreed to this, Dr. T agreed to come and give a talk at my school, which like I said before, is quite amazing. Granted, he is getting paid to come and talk, but he doesn't know this yet, and besides, he agreed to it before he knew he was getting paid. I really think he was just being nice. So I need to be nice in return, even though it's not in my nature. But STILL. Gaaaaaaahhhhhhh!  
• Lesson learned: THINK BEFORE YOU PINK!

DIEP Reconstruction Aftermath: 5 Weeks

Five weeks and feeling good!

Two days into taking tamoxifen, and my world hasn't fallen apart. I am my usual crabby self, and I haven't even had any hot flashes. Knock on wood.

I'm still having occasional shooting pains in my chest and abdomen as I regain feeling, but it's manageable. I also get itchy a lot, but it's manageable, not to mention something I'm used to. (I've been itchy my whole life.) I still have quite a bit of tightness in my abdomen, but it's manageable. I'm upright for the most part for most of the day.

Oh! And the biggest news is that my insomnia is improving in a major way. I've been trying to wean myself off of sleeping pills, and it's going pretty well. I've been sleeping about 5 hours a night and it's AMAZING. It's still not enough, but it's so much better than it was. I'll take it.

Probably the best part of all of this is that I am loving not working. Waaaaaay too much. I'm kind of scared of how much I enjoy doing nothing all day. I knew that work stressed me out in a major way, but OMG, I had no idea just how much. I feel like I need to go back to work just so I don't get used to this level of happiness and stresslessness. (Is that twisted logic? It's like the Seinfeld episode where Jerry and Elaine are arguing over who should get to fly first class, and Jerry's logic is that since Elaine has never flown first class, it's easier for her to fly coach, because she doesn't know anything different. NOW I KNOW DIFFERENT. Ahhhhh!) I hope I don't become permanently lazy.

Interestingly, when I was debating what to do over my work situation, my plastic surgeon wrote me: As far as the recovery, I typically tell folks to anticipate 4-6 weeks to be completely conservative. You are very young and in great shape so should heal very well and much more quickly. I have to say that while I do feel good, I don't feel that good. I'm REALLY GLAD I ignored this, because if I had made plans to go back to work after, like, 3-4 weeks, I'd be one unhappy camper right now.

Anyway, no complaints. Life is good.

9 Years, 364 Days to Go

I took my first tamoxifen today.

I got up, and first thing, before I could even think about it or make an excuse about why I shouldn't take it, went downstairs and just swallowed the damn thing already (along with my vitamin D, vitamin C, multivitamin, and baby aspirin). The sort of funny thing is that I almost took it by accident yesterday, because I wasn't really paying attention as I took all of my pills out of their various containers, and the tamoxifen happens to look a lot like vitamin C. (Do I even need all these vitamins anymore? Who knows?)

After I swallowed it, I waited for the world to end, and it didn't.

All that happened is that I immediately felt nauseous. (And yes, I'm aware that was 100% psychological.)

I'm waiting for the side effects, but so far, nothing. No cataracts yet, no 20-pound weight gain - praise God. (Who are we kidding? It has only been four hours.)

So that's one pill down, 3,646 more to go. That's 10 years x 365 days/year minus three days for leap years in 2016, 2020, and 2024 minus the one I took today. So 3,650 - 4 = 3,646.*

Not that I'm counting the days or anything.

* ETA: And I'm a idiot. Leap years have an extra day, duh. (Thank you, Lexi!) Well, what is three more days in the large scheme of 3,650?