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.

The Last Thanksgiving Lunch

When you check the stats on your almost-abandoned blog, and realize that most of the referring URLs are out-of-country sites that McAfee doesn't approve of, it is probably a sign that you should give it up. But. I don't think I was ever writing this for anyone but myself anyway. I mean, I was and I wasn't. I was writing it for myself with the hope that what I had to say might someday help someone in a similar situation, the same way that I found solace in other people's blogs that I suspect were also written mainly for themselves. So here I am. If you came here looking for pictures of Big Tits, I'm not going to apologize for letting you down.

And besides, I am on a Facebook hiatus following the aftermath of the U.S. Presidential Election. I just couldn't take it, even the stuff I agreed with. I'm now mostly Facebook free, and loving it. The only problem is that I have way too much time on my hands. OMG WHAT CAN I POSSIBLY DO ONCE I HAVE ANSWERED ALL MY E-MAILS?! Hence this post.

Believe me, I've been wanting to write. It's just that my life was very complicated for a while, and there's no way I could have explained everything that was going on, and there's no way anyone would have wanted to listen to it anyway. Now my life is calm again. I can breathe. I'm happier than I have been in a long, long time.

I've been working with my daughter on summarizing events in a brief and concise way, so that I can ask her about a movie or a book without having to listen to an excruciatingly long play-by-play recap of the entire story. I usually ask her to tell me about the book in one sentence, and after she fails, I give her a few more. Five, max. By the end of five (very long, run-on) sentences, I usually have a pretty good sense of what's going on, so that's what I'll try to do here. So:

1. I've mentioned in previous posts that I've been working on a career change.
2. That career change was applying to PA (physician assistant) school. 
3. After 16 years of working toward this goal, including three years in graduate school in biology, followed by nine years teaching biology at a university level, I finally got it together enough to apply. 
4. I came really close, but in the end, I didn't get in. 
5. I thought I would be devastated by not getting in, and although I was/am sad, I am also extremely relieved. 

There are many reasons for me to NOT go to PA school, including things like I have young children and I'd basically have to be away from them for three years, I have a husband, I have a life (a GOOD life!), I have job (what many would consider a GOOD job), I'm 42 years old (and a less energetic 40-something than I used to be after my whole cancer ordeal), PA school is expensive, and I'm not exactly made of money, and... and... and... In contrast, there's really only one reason for me to go to PA school, and that is that I think I'd really like being a PA - and I think I would be a really good one. When I lay it out like this, part of me wants to scream at myself, WHAT IN GOD'S NAME WERE YOU THINKING?! And the answer is very simple: I have no idea what I was thinking. And I think when I got up to the interview, and suddenly my fantasy world became very real, I panicked a little, and thought, OMFG WHAT WAS I THINKING?! I do NOT belong here! 

I've had a while to reflect on this whole experience, and I'm still not quite sure what I think. On a practical level, I feel mostly relief. I only applied to one PA school, because there is only one program that is even close to do-able for me at this point in time. And even so, it was going to be tough. I would have had to spend weekdays away from my family, in a different city, for 2-3 years, AND they probably would have had to move into a different house because without my income AND trying to pay for PA school, we really couldn't afford our house, AND we'd need more money for babysitters and summer care for the kids, and... and.... and...

Most of my sadness comes not from not getting in, but from a feeling of personal failure. I knew that applying to only one school was an extremely long shot, because PA schools are extremely competitive. In a way I think it might have been easier if I had just been flat-out rejected, rather than making it to the interview stage and then being rejected. According to the PA program I applied to, they got over 1,700 applications, and 144 people got an interview. From those 144 interviewees, they choose a class of 44. So... not being chosen in the original phase is understandable, but making it past that first stage and then not being chosen... that just seems more personal. Especially for someone like me, whose strength should supposedly be in interviewing.

The other hard part is that Dr. T and his PA, Pamela, were sooooo supportive of my exploit, I almost feel... embarrassed? I shadowed Pamela and Dr. T for hours and hours and got to see some super amazing things that I will never regret being able to see, even if I never become a medical professional. Pamela used to be an interviewer for the PA program she attended, and really tried to help me prepare for the interview. So on top of feeling that I have let myself down, I feel that I have let so many other people down as well. That is a hard feeling to swallow.

Ultimately, I think it's a good thing I didn't get in. I definitely had my doubts, but if I had gotten in, I would have gone. (I mean, who would NOT accept a spot in a program with a 2.5% acceptance rate?!) And I'm not convinced going would have been a good thing. I think, more than anything, that I needed the possibility for change. I needed to dream, to imagine a different future. For many years, this possibility of a different future kept me going, kept me from being stagnant, able to work toward something new, something exciting. Now that that possibility isn't there, I've realized that just because I didn't get into PA school doesn't mean I have to be stagnant, that I can't work toward new and exciting things, even if those things aren't what I once imagined they might be. And, of course, I could always reapply.

My daughter has been struggling a little academically, which has been part of my hesitation about committing to something as time-consuming as PA school. Even reading, which has always been a strong point for her, is difficult now that she is in fifth grade, and the expectations are much higher. She is supposed to be reading a book a week, but has been having trouble finding books that keep her interest. At our recent parent-teacher conference, her teacher said she had tried to get her to read Jennifer Murdley's Toad, a book she felt all her girls (and boys!) should read. I haven't read the book, but according to my daughter's teacher, it is a modern-day fairy tale about a girl who wants to be prettier, and has the opportunity to be prettier, but then realizes that the sacrifices she would have to make to be prettier aren't worth it, and ultimately realizes that she is happy the way she is.

In other words, it's my life, in a nutshell.

Not that I want to be prettier, but I want to be better in a lot of ways. (And, of course, I wouldn't mind being prettier, but it's not at the top of my wish list.)

I've never been a great mom, despite my best efforts, and I always assumed that my kids were better off spending their time with someone other than me. Maybe that's just a fancy way of saying I've felt minimal guilt in being a professional, working mom while rearing young children at the same time. However, something interesting happened yesterday. I dropped my daughter off at school, and as we were waiting for the bell to ring, I was standing around talking to some other moms. As we were talking, the son of one of the moms came up and whispered something quietly into his mom's ear. Eventually she said to him, 'Oh, okay, you want me to come have lunch with you today? I'll be there.' And I was reminded, at that point, that it was the Thursday before Thanksgiving, the Thursday when parents are invited to have a turkey lunch with their kids. My daughter had asked me to go, a few weeks ago when we were going over the school lunch menu, and I was non-committal about it, telling her, I'll make it if I can. She hadn't mentioned it since then, so I figured I was getting away with not going. And then the bell rang, so even if she had remembered that it was Thanksgiving Lunch Day, she didn't have the chance to run over to me and whisper in my ear.

So off I went to work. I gave a lecture, then had office hours, but the whole time I felt this pang of guilt, that I needed to be with my daughter for the Thanksgiving Lunch. My office hours ended at noon. Lunch was at 12:15. I could make it, maybe. I went back and forth in my mind, because I had so much fucking shit to do at work (pardon my French), and told myself that plenty of parents don't/can't go have lunch with their kids in the middle of the day in the middle of the work week, and besides, my daughter wasn't even expecting me. At the same time, I felt a sense of panic, a sense of urgency, a sense of You want change? Something better? WELL HERE IT IS!! So, at 11:57 AM, I decided, I am going to have lunch with my daughter. Because next year she'll be in middle school, and this is probably the last time she is going to want to have lunch with me at school, and it is a privilege that I have a job where I can go have lunch with her when she wants me to have lunch with her! I cut out of my office hours three minutes early so no one could trap me in my office, and I raced to my daughter's school.

I can't tell you how happy I am that I went to that lunch. It made so many things so much clearer in my mind. Unlike many parents at my daughter's school, I don't spend a lot of time at the school, so I feel like a bit of a stranger when I'm there during any time other than drop off or pick up. My daughter didn't know I was going to be there, so I felt insecure as I went onto the school grounds. I at least knew they had recess right before lunch, so I wanted to find her on the playground so she would guide me through the process of standing in the lunch line.

I was relieved to arrive at her school at 12:14, just enough time to scan the playground before the kids went into the gym for lunch. I was even more relieved that when she spotted me, she came running over to me and gave me a huge hug and wouldn't let go. When I told her I had come to have lunch with her, she thanked me over and over again, and held my hand all the way into the lunch room. She told me, I am so happy you made time to have lunch with me, and continued to thank me throughout the day, and thanked me numerous times before she went to bed that night - JUST FOR HAVING LUNCH WITH HER! I am crying just writing about it.

But here's the thing. I don't want anyone (as if anyone but me is reading this - but, you know, just in case!) to misinterpret my message as one of Hey women! You MUST stay home and take care of your babies! It's just more of a relief for me to understand that there are many paths to happiness, many of which are completely different from what I had imagined. Maybe I've never given motherhood a fair chance. Whatever the case may be, I feel almost giddy with the wide-open possibilities of a happy future.

Whether you are one of a few dear friends still reading this, or whether you are here looking for porn photos, Happy Thanksgiving to you all!

One year ago today...

Last night, I went to a PTA meeting for my daughter's school. I've never been to a PTA meeting before, and quite honestly, I went mainly because there was free pizza. (I don't think you ever outgrow the allure of a free meal.) When I walked in the door, one of my good friends, who was PTA president last year, gave me sort of a dirty look and said, 'I can't believe you're going to start coming to PTA meetings the year after I stop being president!' Since I did not want to admit that I, a grown woman with a job and a nice house, was just there for the pizza, I had to do some quick thinking.

I, um, was sort of busy last year. You know, I was working on my career change and stuff. And oh yeah... remember how I had cancer?! 

It's funny how cancer is not even the first thing that popped to into my mind as an excuse. Of course, I never went to a PTA meeting before I knew I had cancer, either. (What can I say? The pizza idea was brilliant.) But that's not the point. The point is that it is hard to believe that it was just last year that I was going through the most major ordeal of my life. In fact, exactly one year ago today, I was in the middle of the most major surgery I've ever had, and ever hope to have, in my lifetime.

In so many ways, cancer seems like such a distant memory, and in others, it is still with me, every day. It is a weird paradox to live with, not knowing if you had cancer or have cancer, whether you are a survivor or a patient. The physical scars from the surgeries remain somewhat problematic and serve as a constant reminder of cancer. I don't regret this, though. If I hadn't done reconstruction, I would have the constant reminder of cancer in a different way. Nonetheless, sometimes I feel a sense of inner loathing that I went through all of this mutilation for a sensationless lump of flesh with no function. And I am still receiving care for my scarring; in fact, I have an appointment with Dr. T tomorrow.

And then there is the tamoxifen, which I continue to blame for my hot flashes, cold flashes, general fatigue, and pretty much anything else I can blame on it. I've been extremely depressed lately, and because I cannot think of a reason I should be depressed, I blame the tamoxifen. But that's not my biggest gripe. In fact, I've spent so much of my life in various states of mental disarray, I'm used to it, and it could very well not be the tamoxifen and just the fact that I am me. My biggest gripe about the tamoxifen is that it gives me horrible leg cramps. HORRIBLE. I mentioned this to my oncologist the last time I saw him, and he pretty much blew me off, to the extent that I didn't even write about it. Later, however, I did some Googling to try to see why tamoxifen would cause cramps, and while I could find no explanation that could satisfy my nerdy mind, I did discover that this is apparently very common. In fact, many women who stop taking tamoxifen before they are supposed to cite leg cramps as the #1 reason they stop!

I've always had a bit of a problem with leg cramping, usually in the morning when I wake up and do my early morning stretch. But the tamoxifen-induced leg cramps are like the normal cramps on steroids. In the past, I used to get cramps on either the front of my leg OR the back of my leg, but these new ones involve the entire circumference of my leg, often both legs at the same time, often multiple times per night. Let me just tell you, it is extremely painful and also disruptive to my sleep. In fact, it's ridiculous. The other day I was sitting in my office and I got a cramp that crept all the way up my leg and along my hip, and it felt so weird that after a while I started to wonder if I was, like, having a stroke or something. And yesterday while teaching, I got a horrible cramp in my toes that then worked its way up my calf and shin and I seriously thought I might have to stop class. I could go on and on about this but I realize it is a super boring topic that probably reminds you of your Great Aunt Ethel going on and on about her hemorrhoids, so I'll stop. Just feel sorry for me, yada yada. 

And oh, remember my hip saga? Last night, I had a terrible nightmare that I had to wake myself up from. After realizing I had not actually killed anyone, and that my son was not actually dead, I tried to stay awake long enough to not lapse back into the same terrible dream. After a bit, I tried to go back to sleep, but realized that my hip was throbbing. And I mean throbbing. After about 15 minutes I realized my hip did not want me to go back to sleep, so I fumbled around and tried to find some Ibuprofen, which in itself was an ordeal, because I was sleepy and it was dark and I have 20/900 vision without my contacts and I keep the Ibuprofen right next to my tamoxifen (and it's actually in a tamoxifen bottle because I am an idiot) and even in my sleep-induced stupor, I realized the last thing I wanted to do was accidentally take a handful of tamoxifens. LOL. I would have taken something stronger than Ibuprofen because the pain was really that bad, but it was 3 AM, and I did not want to have an opioid hangover during class this morning. I think I got back to sleep around 4 AM, then woke up to - you guessed it - horrible leg cramps around 5 AM.

But OMG ISN'T LIFE AWESOME?! Ha. Really, life is awesome, it really is. It's just cancer and hip dysplasia that suck. :)

Absence of breast, acquired

There is no real reason for title of this post other than the fact that I was looking through my medical history on the patient portal, and I'm sorry, that is just sort of funny. Absence of breast, acquired. It makes me wonder what other ways there are to acquire an absence of breast other than a mastectomy. LOL.

It has been a long time, I know. As I alluded to in my last post, I've been pretty busy living happily ever after, yada yada yada. But in all seriousness, breast cancer seems like something that happened in the very distant past. It's hard for me to believe that whole trip from hell was just last year. Fortunately, I have Facebook memories to keep me abreast. (Get it? Abreast, hahaha.)

So, after all this time, you might be wondering what inspired me to grace you with my presence today. Well, I just had my first post-mastectomy mammogram. It was about four months overdue, but eh, whatever. Part of me just didn't feel like going and the other part of me just felt like living in ignorant bliss for a while. Plus, I was really insanely busy there for a while. (More on that later, perhaps.) You're probably used to the type of cancer survivor who is hyper vigilant about eating healthy and not drinking and exercising maniacally and getting all her screenings done STAT, but that is not me. I've always been a bit phobic of going to the doctor (especially a new doctor) and having procedures done (especially when they involve undressing) and DUDES, you'd think I'd be SOOOO over that by now, but alas, I am not. In fact, my life is so normal right now, I've just slipped right back to being the old me.

I set up my appointment last week, because the semester is getting ready to start and I'm going to have a rather insane schedule once it does. (More on that later, perhaps.) I figured if I didn't have the mammo done before classes start, I very likely would not have it done until Christmas break, which would be a seriously big no-no. Of course, I forgot about it until this morning, when I was transposing events from my planner onto the family calendar, and I went into a bit of a panic. In the end, it was probably a good thing because I didn't have time to get worked up about it. 

Interestingly, I was pretty surprised by how emotional I got about it. I don't quite understand what emotions I was feeling, but they made me a super jerk when I was filling out the required paperwork and doing the whole registration thing. I calmed down a little once I got back to do the mammogram because the tech was super sweet and has apparently worked with women who have had mastectomies before, so it was hard for me to be mean to her. Ha. After I got the pictures taken (right breast only; apparently the foob is considered safe), I went and waited while the radiologist read them. Apparently having cancer puts you on the fast track, and there's none of this 'We will read your mammogram and get back to you in a week' nonsense.

When I was waiting, I actually started crying. I'm not quite sure why, but I did. Maybe it was because I was overcome with the memory of crying in the same waiting room over a year ago. Or maybe it's because there are a lot of moving parts in my life right now, and I'm a bit overwhelmed by some of them.

Apparently I'm fine, or 'stable' as the tech reported. Ummm, yippee? I could lie and say I was hugely relieved, but I wasn't. I figured I was fine. Fine, as in, there's no mass in my breast. I've been checking occasionally. Having no lumps is good, don't get me wrong, but I don't think I'll rest easy ever again just because I have a clear mammogram. I mean, whatever. 

So now that I sound like I need to check myself into a psychiatric hospital, I should stop. But coming here was a good reminded of how cathartic writing is for me, so I promise to come back soon and write about something other than crying in a waiting room, because there is a lot more to life after cancer than that.

Happily Ever After

While I was in the throes of cancer, I started reading blogs about cancer. Of course. I still have a number of those blogs on my reading list, but only a few of them get updated with any sort of regularity. There seem to be two ways that blogs end. One is that the blogger ends treatment, moves on, and lives happily ever after (or something like that). The other is that the blogger dies, which sadly, is not an uncommon ending in the world of cancerland blogging.

Seeing as how it has been over a month since my last entry, I suppose one could say this blog is coming to an end, too. But since I don't feel comfortable throwing a 'happily ever after' party just yet, I figured I should write something.

So, I saw my medical oncologist, Dr. M on Friday. The fact that I almost didn't write anything about it speaks volumes to how far I've come since my first meeting with him. It's a good thing. My daughter didn't have school, so I had her in tow, and Dr. M spent about seven minutes with me, three of which we talked about our dislike of crowds, and how we don't have any desire to go to Disney World. The other four minutes, we talked about the effect that tamoxifen is having on me (hot flashes, cold flashes, nausea, fatigue, moodiness, and generally not feeling like myself), the fact that I haven't had a period since my surgery in September (can I really be in menopause?), and whether or not I should have a pelvic ultrasound for the mass in my uterus (the one that keeps showing up on my hip MRIs). Dr. M did a brief physical exam (not of my uterus, thankfully), told me I was due for a mammogram (OMG it has been one year already!), and asked me a lot of questions that made me realize that he pretty much has no idea who I am. And that's fine. I don't want to become close with my oncologist. That is certainly not something that lends itself to a 'happily ever after' blog termination. In the end, he suggested trying some sort of herbal supplement that might help with the side effects from tamoxifen (I forget what it is) and said he would read the results of my hip MRIs and call me that afternoon to discuss the pelvic ultrasound (he didn't). I hope that he and I remain cordial strangers.

On the other end of the spectrum, on April 12th, Dr. T drove down to my school (the 130-mile trek I'm always complaining about when I have to go see him) to give his talk on advances in plastic surgery that I arranged last October. He gave a fascinating talk, then we went out to dinner - Dr. T, my parents, me, and a colleague I invited along. My parents always take the speakers out to dinner after cafe talks, and sometimes they invite me if they can't find any other faculty to go with them. Of course, me going along this time was a no-brainer. The evening was quite pleasant, and a funny thing happened. Afterward, my parents and my colleague just went on and on and on about how FABULOUS and AMAZING Dr. T was - not just as a surgeon, but as a human being. I was a little surprised at first, because to me the evening had the same feel as, like, an evening out with my book club friends. You know, a nice evening with good food and wine and conversation. Dr. T seemed very relaxed, not as if he were putting on a big show. But then I realized that my dad had never met this man before, and my mom only met him once (and was apparently lusting after him the whole time), and my colleague only knew what few details I shared about him with her. And I remembered the first time I met Dr. T, how awe-struck I was, and how I knew he was the answer to my prayers. I then understood that was what my parents and colleague were experiencing, and it reminded me to never get so used to something that I take it for granted.

I had had a bit of a crazy day leading up to the talk/dinner and was exhausted by the end. When I get so tired/worked up, I often lose my appetite. However, after Dr. T's comments at my last appointment about how I had lost weight and do I even like food, I was determined to show him just how much I can eat, haha. Sad but true story: I felt super self-conscious trying to eat dinner with this guy who thinks I don't eat. Nevertheless, I enjoyed my trout and managed to fit everything on my plate into my GI tract. After dinner, we left the restaurant and said our goodbyes in the parking lot. Dr. T went to shake my hand, but at that point it seemed more appropriate to hug him, so I did, and he hugged me back. It's hard to believe that after all this, that was a first. I love this guy.

Meanwhile, life continues at the relentless pace of 100 MPH. I do think my fatigue is improving (considering it's 11:24 PM as I write this sentence), and that is good. On the other hand, I have been emotionally very fragile, crying long and hard over stupid, stupid, stupid shit, sometimes not even anything sad. For instance, I was at the park today with my kids and the ice cream truck drove by, playing typical ice cream truck music, and upon hearing it, I burst out crying. That is not good. On the other hand, reflecting upon it, I realized the music brought forth so many memories, and while processing these memories, I was full of a genuine love for life, and realized that I want to live for a long, long time. I am not sure if I started crying because I was so happy, or because I am afraid I won't get my wish. Hopefully it's the former. Then again, maybe it's just the tamoxifen.

Kenalog Injection

On Friday, I went to see Dr. T to get a series of Kenalog injections for my 'hypertrophic scarring.' I've been doing all sorts of stuff to try to reduce the scar (massage, cocoa butter + vitamin E, silicone strips), but apparently the whole Asian skin thing (a thick dermis, according to Dr. T) is going to be a perpetual curse to my scar. I figured the injections were worth a shot, although I'm starting to realize that a recurring theme in my personal medical saga is that by the time Friday afternoon rolls around, I'm never in the mood to drive 60 miles to see Dr. T. This past Friday was no exception, as I was having the most bizarre day in which every little thing that could go wrong did go wrong, and I was anxious because I needed to get home and pack because we were heading out of town that afternoon to go skiing. I was supposed to be packed already, but... I wasn't.

As Dr. T was preparing the syringes, I told him I had been dreading the appointment all day, to which he responded, 'I'm not going to sugar coat it; this is going to hurt.' When I lay down on the table and exposed myself, Dr. T reached over casually and grabbed my foob to cop a feel, commenting on how it looked good, and how nicely it had softened up. It practically feels like a real breast. The level of familiarity we now have with each other is amusing and alarming all at once - I think nothing of a strange man reaching out and grabbing my boob, yet the fact that this happens so naturally is rather creepy, if I really think about it.

Then he started the injections. They were not fun, but at least I was prepared for the fact that they would suck. It ranked right up there with getting a cortisone injection. Individually, each injection wasn't as bad as a cortisone injection, but because the scar extends from hip to hip, Dr. T did multiple injections all along the length of the scar as well as in my off-center belly button (which I finally complained about to him, haha), and the overall unpleasantness was up there. And there is something about needles in the belly that's just gross, grosser than needles in other parts of the body. I lost track of how many injections he actually did, but it was probably around 10. Some hurt more than others, because I have varying levels of numbness throughout my abdomen, ranging from no feeling to full feeling. Supposedly the feeling will come back eventually, but when I asked Dr. T how long it would take, he said 'about six months.' And... after a quick calculation, I realized it HAS been six months, so... whatever.

During one series of injections toward my side, where I have full feeling, I almost started crying, although that might have been as much due to weeks of stress and fatigue as actual pain. At one point, Dr. T instructed me, 'I need you to breathe. I'm afraid you're going to pass out.' LOL. He worked his way across my scar, and eventually got to the side that's actually not that bad. As he remarked that that part of the scar wasn't bad, I quickly said, 'Yeah, it's fine,' and pulled the gown back over me. 'I think I've had enough.'

On a side note, as I lifted up the gown so Dr. T could do the injection, he commented, 'I see you've lost some weight.' I was somewhat taken aback, because, hello, it is rude to comment on a lady's weight like that! But then I realized he was using his concerned doctor voice on me, not his 'I'm making casual conversation with you' voice. Did I detect a hint of criticism in his tone? 'I have?' I asked. I'm not usually aware of my weight, except insofar as it affects how my clothes fit, and I haven't noticed any drastic changes as of late. I shrugged the comment off, and told Dr. T I had been really busy, and really stressed. That seemed like enough of an explanation for him, and we left it at that. However, later on he told me that Pamela, his new PA, had found a really good barbecue place in the town where I live, one that does Texas-style barbecue. (Both he and Pamela moved here from Texas, and apparently like the way Texans do barbecues.) I immediately guessed which restaurant he was talking about, and he said, 'Yes! That's it!' Then he asked me if it was good. I told him I didn't know, that I'm not a big fan of barbecue. So then he asked, 'What type of food do you like?' Before I could answer, he gave me a sort of funny look, then said only half jokingly, 'Do you even like food?' Geez, have I really lost that much weight?!

As for the scarring, Dr. T cautioned me that the injections wouldn't have an immediate effect, and that I'd need to come back to repeat this in 6-8 weeks. UGH! I told him that almost made me hope that the feeling in my abdomen never comes back! 

Anyway. At least Dr. T is a lovely person with whom I enjoy visiting, which makes the appointments bearable. Throughout the appointment, we talked about our families, about traveling, about skiing, about my career change, about his upcoming talk at my school. He said that he was going to Costa Rica for spring break, although he didn't know where in Costa Rica, because his wife arranges everything. However, next year he is taking his family to Korea and Thailand, because his daughter is almost 15, and 'pretty soon she won't want to travel with us.' He said he wanted to show his children the type of village that many people in Korea still live in, despite the fact that Korea is industrialized. Then he said that when he was in college, he used to wait tables at a Thai restaurant, and during that time he gained a great appreciation for Thai food, Thai people, and Thai culture. I told him we weren't going anywhere for spring break, then said jokingly that it was because I had spent all my money on medical bills. 'Sorry about that,' he said with a grin, not looking too sorry. LOL. I did mention that we were going skiing, though, so we talked about skiing, the best places to go skiing, and how insanely expensive skiing is, the latter reason being why I never skied much as a kid. He said he never skied as a kid, either, because his family was very poor - We were a typical immigrant family, with three families living in a two-bedroom apartment. (Not to mention, he grew up in Virginia, which isn't exactly the skiing capital of the U.S.) He said he only started skiing as an adult, six years ago, and while he was interested in learning to snowboard, he didn't want to break his wrist. (Yeah, wouldn't it be annoying if he had a surgery planned, and had to cancel it due to a broken wrist?!)

While some of the conversation was surely his attempt to distract me from the unpleasantness of the injections, most of it was like talking to an old friend, and it filled me with an inexplicable sense of ironic awe. Something like this: Wow, I am so unlucky to know this incredible man so well, but at the same time, I am so lucky to know this incredible man so well. Life is funny that way. As my colleague put it, it's the bright side of a dull gray cloud. But clouds are okay. Clouds bring rain, and rain allows us to grow food and pretty flowers. Despite what Dr. T may think, I love food. And flowers, too. :)

What if you only had six more years to live?

I've been thinking quite a lot these days about priorities. Although I'd love to be a model cancer survivor and attribute this to cancer, in all honesty it's something I contemplated a lot even before cancer. Of course, cancer has helped me understand priorities in a different way than before. I've always tried to make time for things that are important to me, and live my life in a way that would leave me with no regrets, but there was always an underlying assumption of a normal timeline for my life, one in which I would live to be at least 80, and where my early 40s would truly be 'midlife.' There was always the 'what if?' element, for sure, but in the past that 'what if?' scenario usually involved some statistically improbable freak accident that I couldn't really plan for anyhow, so why waste time thinking about it, other than maybe buying extra life insurance? Now that 'what if?' scenario is much more tangible, much more real. The possibility of having limited time isn't just some crazy scenario I conjured up in my mind; it could actually happen. And if it does, there's a very real timeline attached to it.

What moved me to write this entry was an article I read this morning. I've mentioned that I teach biology. One of my colleagues sends out a 'Biology of the Day' e-mail every day that is a round-up of all of the major biology news, from mainstream news sources such as CNN to major science journals such as Nature to obscure journals like the Journal of Eukaryotic Microbiology. It's actually an amazing resource for me that helps me stay current in my biology knowledge and oftentimes gives me interesting material to share with my students. Unfortunately, I rarely have time to click on all of the links in the e-mail, so I pick and choose based on my own interests and what I'm in the mood to read about at the particular moment in time I happen to open and read the e-mail.

One of the links in this morning's e-mail was to this article, about a project called 'Photo Ark,' which is a project to capture portraits of all of the world's animals, especially endangered species. I clicked on it because... well, okay, I'll admit it, I like looking at pictures of animals (and so do my students!). And once I clicked on it, I saw that the photos were by Joel Sartore, and I was even more interested. Joel Sartore is a photographer for National Geographic magazine who lives in Lincoln, Nebraska. I first became familiar with his work while I was living in Lincoln, Nebraska, and read a piece that he wrote about Nebraska in National Geographic. After a minor amount of stalking investigating, I realized he lived very close to me, and somewhat marveled at the fact that this world-renowned photographer hailed from the town I was living in, yet received virtually no attention. (Nebraskans are much more into their football heroes.)

Anyway. The point is that if it had been anyone else, I probably wouldn't have scrolled past the gorgeous picture of the African white-bellied tree pangolin. But it was Joel Sartore, so I read the article. The article explained how his 'Photo Ark' project had started. It explained how he was always traveling around the world on photo shoots, while his wife was staying at home with their three kids, until... his wife was diagnosed with breast cancer in 2005, and had to undergo chemotherapy, radiation, and surgery. So he had to stay at home and help out for a year. And while he was at home, he started photographing animals in the local zoo, and the project was born. 

Sadly, his wife's cancer returned in 2012. The article did not elaborate on this, of course, because it was really not an article about his wife's cancer. I'm sure I'm, like, the only person who read it who was more interested in his wife's cancer than of his pictures of naked mole rats. But the article concludes with the following: 

Kathy’s cancer came back in 2012; she had a double mastectomy. That same year, their son Cole, who was 18, was diagnosed with lymphoma. Both recovered, but the illnesses have left their mark. “We don’t get uptight about too much anymore,” Sartore says.

Photo Ark has changed him as well. “It has made me very aware of my own mortality,” he says. “I can see how long it’s going to take.” If he can’t finish the job—he still has thousands of species to photograph—Cole will take over. “I want the pictures to go to work,” Sartore says, “long after I’m dead.”

Perhaps this struck a particular chord not just because I've been contemplating my mortality a lot lately, but also because I've been working on a major career change at the same time. And I want to be clear: the career change has nothing to do with cancer. I was working on it long before the cancer. Interestingly, cancer has added a new sense of urgency to this goal, while at the same time making me doubt whether it's something I should bother pursuing. On the one hand, there's that voice inside me saying all sorts of clichés to the tune of 'just do it!' On the other hand, this career change involves up to three years of schooling for me, which is not trivial, especially considering I am 41 years old and have a family, who will be greatly affected by this. My husband and I have discussed this at length, many times over, and agree that long-term, this will be good for the family, and we can make it work, and in the large scheme of things, three years is not a long time. 

But that 'three years is not a long time' mentality assumes I've got, like, 40 more years in me. Of course I hope that I do, but what if I don't? What if, say, the cancer comes back? The good news of my prognosis is that there's supposedly a good chance the cancer won't come back. The bad news is that due to my age and variables that are not well understood at this point in time, if the cancer does come back, there's a good chance it will come back as metastatic, terminal cancer. 

If I weren't contemplating this major career change, I'm sure I wouldn't be spending nearly the amount of time thinking about this as I am now. I'd just go about my job and home life trying to make the most of each day, checking items off my bucket list, and working toward that 'life with no regrets.' And while I see no compelling reason to derail my plans for the future by convincing myself of a worst-case scenario, it's hard not to ask 'what if?' Are the plans that I have for my future what I want to be doing if I only have, say, six more years to live? I'm not sure why I chose six years, but I guess I'm giving the cancer a few years to come back, then figuring I'll live a few years after that.

Six years, it's reasonable. 

Then I ask myself... suppose all goes as planned, and next summer I'm in school for my new career. What if, at some point, during school or immediately afterward, I discover that the cancer has come back, and it's metastatic? What would I do? If I'm still in school, would I finish school with the optimistic hope that I will beat the odds and live for many, many more years, or would I immediately drop out of school and spend every precious last minute doing the things that 'really matter'? If I've already finished school, would I be angry that I spent the last three years of my life working toward a career I'll never have, or will have for only a few years?

Ultimately, I've decided to go ahead, full force, with the career change. Although it goes against my pessimistic nature, I am also a scientist who believes in data and statistics, and data and statistics tell me there is no reason to be pessimistic. But the decision comes with some caveats, and those caveats center around worst-case scenarios. My new litmus test goes something like this: suppose in the near future, I find out I have terminal cancer, and will likely only live for a few more years. Would I regret how I spent the previous years? If the answer is yes, it's not okay. Whereas before, I saw a reasonable amount of suffering as some path to a better future, I'm not willing to risk that anymore. If the experience is truly unpalatable, it is not worth my precious time, regardless of whether I'm going to live for six more years or sixty. Of course, no experience can be 100% positive 100% of the time, so it's not as if I'm going to say, 'Oh yeah, I had a shitty day/week/month, so I give up!' I'm just thinking that for me, no matter what, there needs to be some reward in the process; that the process must not just be some means to an end... because there might not be an end destination, other than an untimely death. Maybe the present is all there is.

The neurotic, control freak in me needs to have a plan for everything. It's a strength and a weakness. And although I know there are no easy answers, I leave you with some questions. What if you knew you only had six more years to live? Would you live differently than if you had 20, 30, or 40 more years to live? Or... what if you were told you only had one year to eighteen months to live? What would regret?

These are the things I think about a lot these days.

I can't go on. I'll go on.

Something bad is happening, I'm afraid. Whether I'm in the midst of falling apart mentally or falling apart physically or both remains to be seen, but whatever the case may be, I don't like it.

In the past two entries, I wrote that I've been sick. I've been sick for the entire month of February - not falling down sick - but anywhere from low-level annoying under-the-weather sick to thinking I am going to pass out in the middle of a lecture sick. I've dealt with each day as it's come, and mostly kept up a normal schedule, simply because normalcy is what I crave, and because I've got too many irons in the fire right now to drop the ball. (Wow, how many idioms can I fit in one sentence, lol?) I've chalked a lot of what I'm feeling up to pure exhaustion, the type that seeps into every tissue in your body and lays you out flat when you lie down to go to bed a night. The type of exhaustion where you don't wake up and get out of bed in the morning, you peel yourself, one limb at a time, off the bed. But I've kept going, because that is what people do: they keep going.

Then yesterday, something happened. I woke up feeling terrible, the falling down sick kind of terrible. My daughter woke up with a sore throat but wanted to go to school anyway, and we let her, because she didn't have a fever and because we both had to work. I dropped my son off at daycare, and fumbled my way into work. I answered about a dozen e-mails before I got a call from the daycare saying that my son had a 102.7 degree fever and needed to be picked up. It was 9:00 in the morning. Somehow in the morning chaos, between my own illness and my daughter's illness, my son had been overlooked. It was suddenly too much for me to handle, and I literally just sat there for a good five minutes staring at my computer screen, trying to figure out what to do. My husband, who normally has a flexible schedule, just started a new job, and over the weekend, we had just had a lengthy discussion about him needing to put the pedal to the metal for the next year or so. But I had to teach, so what's a working mom to do?

Eventually, we worked it all out, as we always do, but the process exhausted me, way more than it should have. After coughing my way through a lecture about pathogenic bacteria, I came home to tag team with my husband, who had taken our son to the doctor and then brought him home. By the end of the day, my son, my daughter and I had all been to the doctor, and we all had prescriptions for antibiotics. My kids: strep throat. Me: unknown. As I had sat talking to my NP about what type of antibiotic to try next, she rattled off all the other things I should try to get better: sterilize my toothbrushes, wipe down my computer, take a probiotic, gargle salt water, and so on. Then finally, she asked me, 'Rest? Is there any way you can rest?'

I just looked at her. What a dumb question. Of course I can't rest. Who has time for resting? No one I know. But in that brief moment before I responded to her, it dawned on me that I really need some rest. Not as in, yeah, I should try to take it easy. As in, I really need some rest. As in, something bad is going to happen if I don't. I guess I've been ignoring all signs of my body rebelling against me and demanding rest because I already feel like I'm not doing enough. I've had to start going to bed around 9:30 every night, whereas not long ago, my goal was to be in bed by midnight, and I considered lights out at midnight an accomplishment. I simply can't do that anymore. I go to bed early and sleep late, relatively speaking, anyway. I've always been the type who would rather trade morning rituals for an extra hour of sleep, so I can pop right out of bed at 6:30 and be ready to be out the door in 20 minutes. Giving up those few hours of work every night, which used to be my most productive time, has not been trivial, and dammit, that should be enough. But it's not. For whatever reason, it's not enough. I need more rest, no matter how ridiculous it might seem to me.

So today, I did something I've never done before, and canceled my classes and stayed home with my sick kids (who are now acting totally fine) to try to get some rest. In the seven years at my job, I've been pretty dang sick, my kids have been pretty dang sick, including calls to 911 and hospital stays, and I've never canceled class. This latest bout pales in comparison to other things we've weathered, but somehow I felt some urgency this time. I can't keep going in this state I'm in; something's gotta give. Just trying to keep up my normal, everyday routine is physically sucking the life force out of me, and I'm overwhelmed with this feeling of I cannot do this anymore. I'm not sure if this is my body in pure rebellion mode, or my mind falling apart from stress. Either way, I don't like it. It's unsettling. The idea that it's possible that I'm physically not capable of achieving all the goals I've laid out in my mind is not acceptable.

Of course, given my recent medical history, it's hard not to think of worst-case scenarios. I'm not going to lie. I also, in my brief convalescence yesterday afternoon and today, read from start to finish When Breath Becomes Air, a memoir of a 36-year-old neurosurgeon who dies of lung cancer. While it was a truly amazing reflection on how we must face our own mortality, I'm not sure it was the best choice for me in this very moment in time, when I'm already feeling so fragile emotionally and physically. But the author of the book, Paul Kalinithi, frequently repeated the words of Samuel Beckett to himself, so I'll do the same. 'I can't go on. I'll go on.'

Hello, Old Friend

My husband and I have the most hideous reclining love seat you've ever seen. It's the type of furniture you'd expect to find in your grandparents' basement, something you can't even give away for free. It's big and clunky and poorly made, and as my husband explained to Dr. T, It's a color not found in nature. I am not sure what I was thinking when I agreed to buy it, other than I was tired of looking at recliners and love seats and just wanted to be done. I've got even less tolerance for shopping than stress.

However, this reclining love seat and I have come to be good friends. I spent a good deal of time on it after hip surgery and while dealing with DVT, and I slept on it after my mastectomy and for nearly a month after my reconstruction. It has seen me through some difficult times. If I were sentimental, I  would never get rid of it. Fortunately, I'm not.

I wrote that when I saw Dr. T two weeks ago, I was sick. It started off as just laryngitis with a bit of cold-like stuff thrown in, then progressed into a wretched case of sinusitis and bronchitis, with what my husband refers to as 'a marriage-ending cough.' I'm still not 100% right now; I'd put myself right around 80%, which is a lot better than last week, when I was gasping for air, lying down and sleeping any chance that I got, and was convinced that this was the end for me. I figured the cancer had metastasized into my lungs, and that was what it felt like to die. Fortunately, I was wrong.

I don't know whether to be angry at my immune system for failing me, or to feel sorry for it for being so overworked. Either way, I spent most of last week sleeping (or really, trying to sleep, and not actually sleeping) downstairs on my trusty friend, The Hideous Love Seat, because my coughing was keeping my husband awake. I got a total of about 15 hours of sleep in five days, and the one night when I got about four hours, it was because I apparently woke up in the middle of the night and drank 3/4 of the bottle of cough medicine my NP prescribed for me.

There was something eerily strange about being back downstairs in the family room on the love seat. It brought back so many memories, bordering on nostalgia almost. It's hard to imagine feeling nostalgic about such a difficult time in my life, but there was something special about that time. I felt so alone in the family room, but it wasn't a bad type of loneliness. It was true 'me time,' with only myself to worry about, only myself to entertain me, only myself to take care of. This type of absolute calm is pretty much unattainable outside of extreme instances like this.

In Cancer Land, I'm now 'on the other side,' meaning I'm done with active treatment. As I've mentioned before, it is harder than I thought it would be. Anti-climactic at best, depressing at worst. Part of the difficulty is surely because you don't understand why you feel the way that you do, which makes it hard to fix. Most of you is happy that your life is returning to normal, yet a small part of you craves pieces of what you had while in the throes of it all. Then you tell yourself you are crazy, who in their right mind would pine to re-live that experience all over again? But it's not the cancer you want, it's just bits and pieces of the experience. And part of that, for me, was that complete and total 'me time,' when it was just me and the trusty love seat.

Sleeping Dogs

I drove up to 'the city' (no, not 'The City' as in New York City) today for a check-up with Dr. T. It was pretty uneventful. You may recall (though probably not) that I was super duper sick the last time I saw Dr. T, the type of sick that results from drinking waaaaaaay too much wine the night before. (On a side note, my book club friends and I were just reminiscing about this night, and how ridiculously drunk we were. Much to my relief, none of them remember the conversation we had in the midst of our drunkenness, during which I know I shared way too much. The moral of the story is: if you tend to overshare when you're drunk, be sure that everyone around you is just as drunk.) YEAH SO ANYWAY, I was just as sick at today's appointment, only not because I was hung over. Unfortunately, I'm just sick with your run of the mill crapola, which by itself isn't awful. However, I've got a raging case of laryngitis going on, too, to the extent that I can only sometimes talk above a whisper. And when I can, it takes a lot of energy and my voice comes and goes and basically it's pretty horrible. I'm sure some of it has to do with the fact that I teach, and therefore spend a good deal of time each day yelling talking in a loud voice so people can hear me, and I tend to lose my voice even when I'm not sick.

Needless to say, I was not in the mood to drive 60 miles to go see Dr. T. Also, we've gotten a lot of snow in the past week, and driving around my town is a super bitch, so I left way too much time to get to my appointment. Once I got out of town, the roads were fine, and as I approached the city, I found myself with 40 extra minutes to kill. So I did what anyone with obsessive organizing behavior would do: I went to The Container Store. I've never been a Container Store before, though I've read about them in magazines, and driven past them before, and after I went in, I was glad we don't have one in my town, because I'm pretty sure I could spend my whole paycheck there. Fortunately, I didn't have time to do anything but walk around the store with my mouth wide open before I had to get back in the car and drive back to The Breast Center.

I started off the appointment with Dr. T's PA (this must be a new thing?), but it worked out nicely because she did a brief exam, then when Dr. T came in, I didn't feel as self-conscious because she had already seen my boobs, so whatever. And because she was female, there was apparently no need to call in another chaperone. Dr. T basically thought everything looked good, more or less, and reiterated his 'offer' to do revision surgery. In contrast to what Dr. L told me, he said that swelling in the reconstructed breast goes down by three months, so basically what I have now is what I'll have forever... unless I do something about it ( = I'm bigger on my left side than on my natural side). He also noted that my abdominal scar and scar around my belly button were thicker than normal ( = really f-ing ugly), which I was glad to hear, because I think my scars are ugly as hell, but as I've learned, what I find appalling is actually normal in many cases. This is the shit no one tells you about.

Interestingly, Dr. T told me the scarring was normal for 'Asian skin,' and, 'The same thing that makes us look young for so long also causes the scarring.' I found his use of 'us' amusing, and also wondered if this wasn't something he was just making up. After all, as the hematologist he sent me to said, 'Sometimes medical people just make things up.' We then had a conversation about looking young and getting carded, and he said his wife loves getting carded.

Eventually he suggested that I let him inject a steroid into my scar to help reduce it, and ordered some from the nearby pharmacy. This would also help with the intense itching I'm experiencing as the feeling returns to my abdomen. So while I braced myself for the pain of a steroid injection, Dr. T then decided against doing the injection today, saying that he wanted to get approval from my insurance first. 'Steroids are actually very cheap, but insurance companies charge a lot for them, and I don't want you to get an outrageous charge,' he said.

Somewhere in all of this, we discussed the lecture that he is going to give at my school in April, and he basically asked me for my advice. He noted that a lot of his slides are a bit graphic (ummmm, yes, I've seen some), and I told him he should definitely take those out. I told him that his talk should appeal to a broad audience, and very few people will be hard core medicine types. And furthermore, 'A lot of people will be eating dinner while you're giving your talk.' After I said this, he replied, 'I'm so glad we're having this conversation right now!' Then he added, 'I have a talk that I give to potential donors; I think I'll give that one instead of what I was planning.' Needless to say, I'm now a little bit stressed out about what exactly he is going to talk about/show - eeeeeeeeek. At the very least, it will probably give me something interesting to blog about. :)

In the end, I told him that I was still considering revision surgery, but that it really couldn't happen before summer, as I don't have that type of time off of work. He said I'd be out for a week, then added, 'maybe two,' neither of which I can do at this point. Anyway, I'm going to go with Dr. L's advice and wait a bit longer, just because. Because I'm pretty happy right now, and I'm not anxious to have more surgery. And so that is that. For now, anyway.

I'm torn between my tendency of the past to go for the gold ( = perfection) and my gut feeling to leave well enough alone and let sleeping dogs lie. Meanwhile, I'm thankful that the biggest thing in my medical life right now is something so trivial as having a C cup on one side and a B cup on the other. As I tell my students almost every day, it's all relative.

Clutter

It has been too long. I want to thank the anonymous commenter on my last post for inspiring me to get off my duff and try to put into words what has been going on for the past two months. So much, and yet so little.

I've been very busy. But that's hardly an excuse. Aren't we all? Work, kids, career change, yada yada. For the most part, returning to work has been a good thing, and so far I'm pleased with how the semester is going. For the most part, I'm in a good place mentally.

Except when I'm not.

I couldn't put a finger on it until I got a packet in the mail from Cheri, Dr. L's nurse navigator, whose job it is to guide patients through the murky world of breast cancer. (In all honesty, she was pretty useless.) The packet contained a summary of all of my treatments, and a guide to life after cancer (which seems a little presumptuous, no?). Then again, I guess 'life with cancer' would be too depressing, and apparently depression is normal even if you believe you are living life after cancer. For some reason I actually read the entire informational sheet, as if it could tell me something I hadn't already read on the Internet or someone's blog. However, I do think this bit pretty much sums it up for me:

Survivors are often surprised by their emotional reaction at this time. They anticipate jumping for joy and throwing survival parties, and instead find themselves crying in the parking lot after their last treatment, feeling vulnerable in unexpected ways. Some find it disconcerting that they are no longer receiving active treatment to attack rogue cancer cells; furthermore, their treatment team is no longer giving them much needed daily or weekly support. 

To say that I'm feeling complex emotions at this time is a massive understatement. Some of it is centered around my still strained relationship with my parents, and some of it is because it is truly difficult to go from a time when you're in weekly contact with doctors and receiving daily support from friends and family to, well, back to 'normal.' I went out with a friend the other night, and she commented that since I finished my cancer treatment, she has missed me. It may sound silly, but I've missed her, too.

Some of the other complex emotions I'm feeling I truly don't understand. And I think, in a way, that is not helping my relationship with my parents, because they don't understand how I've changed. And I don't expect them to. I mean, hell, *I* don't even understand how I've changed, I just know that I have.

One of the most intense changes I have felt over the past few months is that I absolutely, positively, cannot stand clutter and disorganization. I've always been a fairly organized person - I am VERY organized in my professional life, less so in my personal life - but lately I've been HYPER-organized. At first I just thought it was my anxiety about returning to work causing my obsessive behavior, and I'm sure that contributed, but now I feel like my brain has actually changed. I used to get organized just 'cuz, you know, it's fun or whatever. Now I get organized because I will loathe myself I do not. The same goes for clutter. My husband is a bit of a hoarder, and I'll admit that I keep too much stuff, mostly because I feel guilty throwing things away because landfills are bad and all that. And because I'm cheap. Seriously, y'all, I'm still wrapping gifts in wrapping paper and ribbon from the wedding presents we got 15 years ago. Add in two kids to the mix and put us in a big house, and voilà, I present to you: WAY. TOO. MUCH. FUCKING. SHIT. Pardon my French. Whereas before, I was always like, yeah, I need to clean out that closet, now I am like OMGICANNOTSTANDTHIS! And so in my spare moments, and I do mean almost all of them, I get rid of things, and I organize what's left. I've been doing this obsessively for about a month now, and I think the only reason it hasn't evolved into full-fledged disordered behavior is because with everything else that's going on, my spare moments are few and far between. However, it does leave little time for blogging.

Part of it, I'm sure, is that this is my way of dealing with anxiety, both the anxiety that stems from things I understand, and the anxiety that is of unknown etiology. The other part is a little deeper, I think. The other part is that little feeling I have that it's possible I might not live much longer. I mean, maybe I will, but it's possible I won't. At the very least, I am in touch with my own mortality in a profound and almost primitive way; I feel it from deepest parts of my heart and soul and gut, and oozing from every cell at every moment. I had always pictured myself as an old woman, going through my parents' shit and my husband's shit and my kids' shit after they moved out of the house, but now I know there is a real possibility that my parents and my husband and my kids will be the ones going through my shit. I mean, I always knew this on some level, but now I really know it. And OMG this shit has to go. No one should have to deal with all this shit.

It's a delicate balance, though, trying to find that fine line between being completely morbid and doing a healthy dose of de-cluttering. There are a lot of complex emotions that accompany each cleaning episode. Am I throwing away all of my children's artwork because it's truly taking up too much space (not to mention it's ugly), or am I throwing it away because I'm the only one who ever looks at it, and pretty soon I'll be dead? Am I beginning the process of detaching myself from my life and the things I love that make up my life, like papier-mâché tiger heads?

In one of my favorite movies of all time, The Shawshank Redemption, some of the prisoners have a mantra of Get busy living, or get busy dying. While the poster child breast cancer survivor screams I'm busy living! as she hikes the Appalachian trail or whatever, I'm not that kind of survivor. As Katy Jacob would say, I'm the wrong kind of survivor, with the wrong story. I am busy living, trying to make the most of each day. I've always been this way, I think. It's not the cancer. The difference is that now getting busy dying is a part of my life, too. It's both pessimistic and practical at the same time. And it's a delicate balance.