radiation saga

Absorption

Last year I wrote a series of entries detailing my experiences with radiation therapy. I likened the process to emptying a box. It fit, because once the therapy was over, I packed it all away so I didn’t have to think about it. Unfortunately the box sat in the back of my brain and leaked. The process of writing the entries let me empty the box. Once the box was completely empty I felt better and I moved on. There was some evidence that the box emptying worked, but I wondered whether the emptying of the box would be effective in helping quell my typical January depression. I still can’t call January a happy month, but this year it definitely had a more hopeful flavor to it. I planned ahead and kept busy rather than wallowing.

I haven’t reread those radiation entries. I have been afraid to. I put the entries behind me in much the same way that I put the radiation experience behind me. There comes a time to just move on. However, this time I understood that there would also come a time to revisit. I waited until after January was over. I waited for sunny weather. Then today the smell of Howard’s protein drink triggered some old emotions and I decided to just get it over with. I read them all.

I wrote many of those entries with tears rolling down my face. It was a huge purging of emotion. I remember feeling so strongly about what I wrote. All I found today were echoes. My eyes watered a couple of times, but not much. I was very surprised to read about some specific details. I read about them as if I were reading something that someone else wrote. It is as if, having written the experience down, my brain decided the memories were no longer pertinent and dumped them. Seven years after radiation I could still recall the puzzles I put together in the lobby. I could still recall some individual pieces and puzzle sections vividly. Today my memory of those puzzles is vague at best. How can I remember something vividly for seven years and then forget it a year later? I emptied the memory of emotion and it just flitters away.

I’m so glad that I wrote all of these radiation experiences in such detail. At the time the detail was necessary to the emotional purge. For the future the detail will be necessary because I’m going to forget. I’m going to forget. It was the worst, hardest thing I’ve ever been through and I’ve gotten over it. It no longer haunts me. All that are left are random hidden pockets, like the smell this morning.

I haven’t put it behind me. I’m beyond putting it behind me. Things behind me are like a shadow that follows me everywhere. I’ve done better than putting it behind me. I’ve absorbed it. My radiation experiences are no longer something to bury, or run from, or leave behind, they are just one of the many pieces of experience which make up the whole of me.

I’ve decided to open up my “radiation saga” beyond just those on my friends list. Feel free to read if you so wish, but be warned that it is a record of old pain not happy reading. The Radiation Saga

That Smell

Howard is currently on the Atkins diet because he’s determined to lose weight. I’m not joining him in full-on Atkins, but I’m reducing refined sugars and simple carbohydrates. I’m doing it in part to keep Howard company, but even more because I’m tired of the 10 extra pounds I’ve put on since Patches was born. Dieting together is not something Howard and I have ever done before. It has been kind of fun to talk food and try out some of the low carb options that are available these days.

One of the things that Howard occasionally eats are the low-carb Atkins shakes. This morning he offered me a taste. I brought the open can near my face and then the smell hit me. It is amazing how powerful a trigger smell can be. I instantly handed the can back and tried to quell the flood of unleashed emotion. Eight years ago this month I was in the midst of radiation therapy for a (thankfully benign) tumor under my chin. The radiation made my throat sore. Not just sore, but actively painful whenever I swallowed. Imagine a really bad sunburn on the inside of your throat. Eating was a painful chore and so we used protein shakes to attempt to get enough calories into me to keep me alive. I now loathe protein shakes. I will probably always loathe protein shakes. The smell of that Atkins shake went straight to the back of my brain and unearthed a swell of depression and hopelessness and exhaustion. I had to fight back both nausea and tears.

Fortunately mornings are busy and I was able to dive into the tasks and reassert normality. But when I threw something into the trash and saw the can in there I loathed the can with a vehemence which surprised me. The cans in the box on the shelf weren’t as bad, but I didn’t like them either. Prior to smelling one, the cans had no more emotional content for me than the jars of spices they stand next to. I need to get over being angry at cans because it is silly and because Howard finds the drinks useful. But I’m not going to smell one again.

Smell triggers are sneaky and powerful. The smell of a clean baby makes me feel happy and glowy like I did when I snuggled my own children as babies. The smell of pine candles feels Christmasy. There are myriad other smells which trigger emotions both happy and sad. Some smells even trigger specific memories or images. Sometimes the smell triggers one emotion, but the context makes us feel differently. If a person who desperately wanted another baby smelled clean baby, the smell would trigger happy emotions, but then remind the person she can’t have that. She would end up depressed or crying because of a happy smell. If the smell trigger is out of place, like pine scented candle outdoors in summer, it creates a dissonance that I have to pay attention to in order to resolve. I think this might be one reason that the protein shake smell had such a strong effect on me. I was standing right there in the kitchen where I used to be when I drank protein shakes. The location was right as well as the smell.

I know that it is possible to defuse smell triggers. Another smell associated with the actual therapy itself was the sharp smell of ozone. I discovered that some brands of plastic wrap have this same smell. For a long time, a whiff of that smell would make me nauseous. But I’ve had enough contact with plastic wrap since then that the smell no longer affects me. Perhaps I should try to defuse the smell of protein drinks. On the other hand, I couldn’t avoid plastic wrap easily. Protein drinks are much more rare and expensive. Avoiding protein drinks is easier and less expensive than defusing the smell. The other, other hand (not the gripping hand, because it isn’t stronger) is that I hate having that smell as an emotional landmine ready to ambush me. More thought is required.

Maybe it worked.

Last Saturday I spent all day and all night in the hospital taking care of Gleek. At one point I remember looking around the hospital room and realizing that I wasn’t feeling that “this is a terrible place” vibe that I’ve always had about hospitals. I didn’t want Gleek to be sick and I would have preferred to be someplace else, but the hospital itself was not filling me with angst. I was too busy to pay more than passing notice to this thought.

Today it hit me. Hospitals have not always filled me with dread. They have only done so since since surgery and radiation therapy. Perhaps I didn’t mind the hospital last Saturday because of all the emotional purging I did last January. I opened up and emptied out those reservoirs of feeling and now when the hospital subconsciously reminds me of those events, I have no angst threatening to burst free. All that blogging seems to have done me at least that much good. Maybe I’ve also short circuited the midwinter=bad as well.

It is nice that hospitals can just be places instead of bad places. It is also nice that when I was stressed over Gleek I did not have old emotions lingering close and adding to the unpleasantness of the experience.

odds & ends

When I began writing the following post, I knew I had a couple more topics I wanted to cover. But in the writing I discovered that they weren’t so much topics in and of themselves as a few odds and ends that I needed to clear away.

Both times I had the tumor surgically removed, I was the one to discover it. This is unsurprising the first time around. But the second time around I was told by my ENT that everything looked alright and only a couple of months later I returned to him because I wasn’t sure it really was. This pair of events have convinced me that the primary responsibility for detecting a reoccurance was mine. I’ve spent significant amounts of time in the past 7 years poking myself under the chin trying determine if anything has changed. It’s not an easy task because all the scar tissue and missing salivary glands make the whole area lopsided and lumpy to the touch. Any time I had a sore throat or stiff neck or even an achy feeling, part of me was afraid it was a harbinger of reoccurance. It doesn’t help that anytime I think about the tumor I get psycosomatic aches where it was removed. Every entry I’ve written in my “radiation saga” has left my throat feeling achy. After seven years I still have the fearful voice that gibbers about possible reoccurances. My radiation oncologist gave me some really helpful advice that I use to quiet the gibbering voice of fear. He told me that with a true problem the symptoms will last for an extended period of time and the intensity of the symptoms will increase rather than abate. Application of this information has saved me many uncessary trips to the doctor for sore throats and stiff necks.

At the time of my radiation treatments I was a primary teacher for a church class of 11 year old kids. It was a challenging class. I would work and prepare a lesson only to feel like I was teaching to a brick wall. A really noisy, chattering brick wall that occasionally hit the other brick walls for no apparent reason. A couple of weeks before the beginning of the treatments I found that I couldn’t face my primary class. I didn’t have the emotional energy to try yet again to reach them. Howard ended up pinch hitting for me that Sunday while a friend took me home. I came back the next week to teach. I tried to keep teaching, but it quickly became apparent that I simply couldn’t. Someone else took over the class until after radiation treatments had been over for a month. I don’t even know who substituted for me for those months. I remember one of the kids asking me if I’d stopped coming because they were bad. I got to explain to them about the radiation. I was asked to be their teacher because the class needed stability. Somehow I don’t think I provided that. By the time I returned to teaching the kids were starting to turn twelve and move into the teenage programs. The window for bonding with that primary class was gone. I still feel sad about that sometimes. Those kids are all 18 now. I wish I could have been more important/helpful in their lives, but at the time I just didn’t have anything left to give.

There were bright spots during radiation therapy. Most of them were a direct result of either my kids, or my mom being there with my kids. At the time Kiki had only plain shirts and she wanted some shirts with pictures. Mom helped me break out some paints and we painted decorations on shirts for Kiki. Mom lifted an illustration from Kiki’s favorite book (The Lion and the Little Red Bird) and painted it on one of the shirts. Kiki wore that shirt for two years. Then we put it away. Gleek wears it now, but she has almost outgrown it. I’m not sure what I’ll do when she does. That shirt won’t mean as much to another person. For me it is a gift of love and hope. Mom also wrote a couple of beautiful poems about Kiki and Link blowing bubbles. She put them into scrapbook pages with pictures. I treasure those. I have other pictures of the kids during that time. They look really happy. I’m so glad my kids were happy.

I grew up loving to sing. I didn’t have any professional training as a child, but I learned songs by ear and memorized them almost without trying. I didn’t even realize that was unusual until I was in a church choir and lamenting that I couldn’t read music. But then I realized I was learning the music faster than some of the people who could read music. This musical background has lead to challenges whenever I attempt to sing with other people. For some reason Howard and I simply cannot sing the Happy Birthday song without clashing keys, but if I let him start it, then I can chime in harmoniously on the second line. After my first surgery, my speech was slurred for almost two months. I did not sing in church during that time and I missed singing the congregational hymns. My second surgery didn’t cause that problem. Radiation was another story altogether. During the radiation my throat hurt and my world contracted so I didn’t much care to sing. But once the pain was over and I was ready to resume my life as normal, I was dismayed to discover that I still could not sing. My vocal chords simply would not hold a note. I’d try to sing and my pitch would be sliding all over the place. That was hard to take. I cried for the loss of that part of my life. I feared that the effect would be permanent.

I didn’t want to deal with the emotions attendant on this discovery so for almost a year I didn’t sing at all. Then gradually I began singing in a low voice during congregational hymns. But more often than not I’d use managing my kids as an excuse not to sing at all. Then I was called to be the secretary for the ward choir. I was to take attendance, manage the music, and sing. It was not an easy calling on our family. Howard didn’t like having to haul kids home by himself. Gleek was a crawling baby and then a walking toddler. She’d play on the floor, attempt to play the piano, and on one memorable occasion she fell and cut her lip. After that I sent her home with Howard too. That made him even less excited about the calling. Despite those difficulties, the calling was a gift to me. My vocal chords had healed enough that I could mantain pitch. The practice strengthened them. By the end of 18 months of choir singing, my voice was better than it had ever been. I had regained one joy that I thought radiation had permanently stolen from me. I still cry thinking about it. It made me realize in a way that I could not before that I’d won. That tumor could have ruined my whole life if I’d let it, but there I was reclaiming my joy in singing.

I was released from my choir secretary position when Patches was born. I haven’t sung in the choir since then because my kids need me to be home right after church. But someday when my kids are a little older I will sing in the choir again. I look forward to that. For now I thoroughly enjoy the congregational singing and whatever other random singing comes my way.

And the story of my singing seems to be an excellent way to end my posting about radiation and my tumor. The medical treatment of that tumor was the hardest thing I’ve ever done, and yet here I am. I’ve survived, more than that, I’ve thrived. I hope I never have to go through anything like it again, but honestly I’m not sorry to have been through it. I am a stronger, more compassionate person for the experiences I’ve had.

Well, look at that. I think this box is empty now.

I’ve been watching my african violet, waiting for it to bloom. It usually blooms in January, but I forgot to water it in December and it went dormant. I’m longing for flowers and so I’m watching the bud stalks slowly creep upwards. It’ll probably be in bloom next week. This african violet was given to me in January of 2000 by some good friends who knew it was the anniversary of radiation therapy and wanted me to have flowers in the winter. It has given me flowers every winter since then and I love it every year.

I got my wish about lots of snow and I find that, while snow is better than bleak, what I really want is spring. But before spring comes I want to be completely done with writing about my radiation experiences. It sent tendrils into my life in many unexpected directions. Some of the tendrils are so sneaky that I didn’t even know they were there until I began writing these entries. Mine was not the only life affected.