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.

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.