Saturday, February 20, 2016

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.

Friday, February 5, 2016

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.

Tuesday, February 2, 2016

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.