radiation saga

I think that one of the reasons I’ve left all these thoughts and feelings about radiation therapy boxed up for so long is fear about how it would affect Howard if I opened it up. For me talking about all this stuff may be therapeudic, but it was significant in Howard’s life too. I never want to make his day worse. That hurts. However I began unpacking this box on Howard’s advice. Apparently the advice is good because since I unloaded in the last few entries I’ve felt much better about the season and life in general. It is tempting to say “good enough,” but I think I need to finish or I’ll still have this box hanging around with a few things rattling around in it.

I asked Howard if reading my “radiation saga” was affecting his mood. He was having a down day on the same day I wrote about the process of radiation therapy and I was worried that my entry had contributed. Howard told me two things. First that he didn’t think that my entries were affecting his mood. Mostly he was reading them and thinking “I didn’t know that. Or that. Or that.” He came to the conclusion that I’d really bottled up lots of stuff. Which brought him to his second point, even if I was affecting his mood I needed to write it all anyway.

Unpacking

I have a personal theory about Post Traumatic Stress Syndrome. I believe the brain replays traumatic/adrenaline surged events in order to learn how not to do that again, whatever that may be. The fastest way for a person to end this kind of playback is to examine “that” and plan alternate courses of action to prevent it. Post Traumatic Stress Disorder occurs when a person feels powerless to affect the cause of the trauma. The playback is endless because no matter how many times the event is played back no pathway is found to prevent it from ever happening again. “Playback” may be as vivid as a full sensory flashback, or as mild as a feeling of fear or depression when similar circumstances are encountered. By this point in my post I’ve probably played merry hell with proper psychological terminology, I don’t much care. I’m trying to explain to myself what has been happening in my head for the past 7 years.

Seven years ago I underwent 7 weeks of radiation therapy to eradicate a tumor under my chin. It was a miserable experience. The tumor had been surgically removed, regrown, and removed again. It looked like the only way to prevent a cyclical repeat of regrowth and surgery was to radiate it until it was dead and I wasn’t. The therapy began at the end of January 1999 and ended in the middle of March. My mom had to come at stay with us for the last three weeks because I couldn’t keep things together. As soon as the therapy was over I shut the door on that part of my life. I was so desperate to be done with it and never go there again that I didn’t even want to think about it. I believe the proper psychological term for that is denial or maybe avoidance.

In the past 7 years I’ve always thought of radiation as something that was over. I’m done with that, so I don’t need to think about it. Only I’m not done with it. The experience was long enough and unpleasant enough that it set up a whole raft of associations in my brain that affect my moods and thinking. Howard tells me that every January/February he observes a noticable downtick in my moods. As soon as the holidays are over I start longing for spring because in 1999 spring coincided with the end of radiation therapy. I love crocus because they are a sign that the Bad Time is over. Last year I didn’t have a “downtick” during the winter. I remember thinking about it and feeling like I’d finally put behind me the last lingering emotional effects of the radiation therapy. I was wrong, this year all the associations are back with a vengence. Apparently I can’t just “put it behind me,” I need to face it and examine it. Not really something I want to do.

So I guess it is time for me to end the avoidance or denial or whatever you want to call it. I need to do some writing to take a clear look at what I went through and how I feel about it, because I packed the experience away so quickly I’m sure there are unresolved threads there. It’s been packed away for so many years that the memories are sure to be moth eaten and wrinkly, so anybody who was around me back then is welcome to add input or corrections as they see fit. This process will probably take several entries, I’ll try to put them behind cuts so that if anyone else wants to avoid this plunge into my worst winter, they can. To be honest I have very mixed feelings about putting this in livejournal at all. Part of me is afraid that it’ll look like I’m asking for pity or sympathy. This is the same part that is always reluctant to ask for help even when it is obviously needed. Also this is a very personal delving into my psyche and a life-altering experience, do I really want that hanging out in a public place? On the other hand I would love it if my experiences could be of some help to someone else. It would be nice to be able to feel like there was a point to this miserable experience. Also I’ll be able to sort my brain better if other people are around to comment and help me make connections that I’m missing. And there is also that whole avoidance thing. I’ve begun a couple of times to write about radiation, but without someone else involved I get about a half page done and quit. Livejournal is more like telling other people than like talking to myself.

So I’m going to take a middle approach. Everyone on my friend’s list will be able to read these entries because I already trust all of you to be kind and considerate. If any of you know someone who might be helped by anything I share, feel free to pass it on, or put them in touch with me, but do not post it in a public place. I may in the future decide to make all of this public information, but I’m not ready to do that yet. If you have thoughts for or against making this public, I’d be interested in hearing them, but I don’t promise to follow your advice. There will be more than one entry on this as I refine my thinking and sort my thoughts. I’m not sure how many entries this will come to, hopefully not too many. I don’t want anyone to get bored and I’d like to sort quickly. Of course that desire to “sort quickly” is a reflection of my desire to be done with it. Sigh. I definitely need to unpack this box.

Medical Memories

I know it is silly, but I’ve been feeling a low-level concern over how Howard is doing today. Most of the concern is probably due to the fact that I’m reading Reflex by Stephen Gould. The major plotline of this book is “Woman searches for missing husband.” The husband in question was snatched, put through unpleasant surgery, and then kept in inhumane circumstances. I’m pretty sure that none of those things apply to Howard, but he hasn’t called me yet today. It’s being a fun read and I’m enjoying the book. I just wish my subconscious wasn’t hijacking the material to feed my silly anxieties.

My subconscious has sideswiped me with material from this book in more ways than one. A description of the husband waking up just post surgery to discover what has been done, let me to have…I’m reluctant to call it a flashback, but it was definitely a vivid memory of a similar waking of mine. In my case I knew about and consented to the surgery, but that in no way decreased the disorientation of discovering that things had been done to my body while I was completely oblivious. I expected the incision and stitches. I did not expect the patches and stickers where sensors had been attached, or the pairs of pinpricks where a drape had actually been sewn to my skin to keep it in place, nor the fact that I was wearing a different hospital gown that the one I’d gone into pre-op wearing. I’m pretty sure that the sewn drape and the gown change were a result of the surgery being more involved/exciting than anticipated by the surgical team. They anticipated a 2 hour surgery and it was more like 4 and a half. I was supposed to be able to go home the same day, I ended up staying overnight. I was too groggy to ask, but I suspect that the reason for the clothing change was because the orgininal clothing had gotten disturbingly bloody. I’m also pretty sure they were changing the clothes as I was coming out from under anesthesia because I remember being rolled around. I was very dizzy and it felt like they were rolling me right off the table. I remember flailing my arms to regain balance and someone grabbed them and reassured me. Then the rolled me the other direction and I flailed again. I think they changed me from one bed to another too.

I remember the nurse that night was very kind and sympathetic. She kept looking at me as if I reminded her of a dead loved one. I was partially grateful for the attention and a little creeped out by it. There was a thunderstorm that night and I got out of bed and went to the window to see if I could see it. I couldn’t see it well and the nurse found me by the window and ushered me back into bed. I don’t sleep well in hospitals. Howard brought Kiki to come visit me at some point. She was wearing a dress that I’d never liked the look of and so had never pulled out to put on her. But it looked cute on her and after that she wore it alot. She was 18 months old. Howard didn’t bring her when it was time for me to go home. Howard helped give me a sponge bath before getting me dressed in my own clothes. It felt so wonderful to be clean. It felt even better that Howard was doing it and not some creepy nurse (who had thankfully gone off-shift). During that clean up we discovered even more patches on my back and blood that the nurses had missed cleaning up. I remember groggily showing Howard the matching pinpricks and telling him “They sewed it to me!” in a petulant/outraged tone. Howard laughed and somehow that let me laugh too and it was better.

At home I was groggy/drugged. Good friends came to visit. I was supposed to be resting, but somehow the drugs affected my sense of touch. Everything I touched was so soft that it was distracting. I got out of bed, staggered down the hall, and told everyone “I couldn’t sleep everything is too soft!” They laughed and put me back to bed anyway. My speech was noticably slurred for a month after the surgery. Talking was difficult and I often had to repeat things to make them understood, so I often didn’t speak up when I wanted too. I worried that the slur would be permanent and pondered how that would change my life. I’m so accustomed to being articulate. The incision and stitches were very lumpy. The lumpiness went away as the internal stiches were absorbed by my body, but it was a really impressive wound for awhile. We all joked that I’d timed the surgery wrong because it was healed into a pink scar before Halloween came two months later.

My second surgery was essentially the same surgery, same location, same length, same tumor, but the experience was much easier. We knew it would take place almost two months in advance and my mom came to help watch kids. At least I think she did, I may be confusing it with her stay during radiation therapy 8 months later. We knew before surgery that I’d be staying over night. There was no sewing of drapes or changing of clothes while I was unconscious. I still had sticky patches to wash off, but not blood. The incision and stitches were neat, not lumpy. The surgeon was much more experienced and I’m pretty sure that is what made the difference. No surgery is pleasant, but the second doesn’t have the dark lingering angst from it that the first does. In fact I’m pretty sure that much of my hospital aversion dates from that first surgical recovery. I don’t like hospitals not even for happy events like having babies. Bad things happen in hospitals. Or at least so my buried psyche tells me.