Radiation effects

In my last entry on radiation I explain the process of getting radiation therapy. The description of it makes it sound unpleasantly medical, but not painful. So why was radiation therapy the worst experience of my life thus far? It is a good question. I sometimes ponder gratefully that I’ve gotten off lightly. I did go through a miserable experience, but I survived and it isn’t chronic. I get to be done with medical hell when so many people have to live with it daily and permanently. What did radiation do that made me so miserable?

Anyone who has been x-rayed knows that there is no physical sensation associated with being irradiated. It isn’t painful. It’s like a sunburn which doesn’t hurt while it is happening, but is cumulative and hurts alot later. In fact sunburns ARE radiation burns, so the similarity shouldn’t astound. But fortunately we aren’t able to get sunburns internally. Radiation therapy can provide those.

When I first agreed to the therapy my doctor gave me a long list of effects that radiation would have on me. Some of them were short term, some of them long term. I confess that I paid more attention to the list of short term effects because they were in my immediate future. Now of course the long term effects are more concerning, but I didn’t have experience with thyroid failure back then. The short term effects: tastebuds shut down until after therapy has stopped, the throat will get sore, the skin will become sore. The long term effects: All salivary glands in the line of fire (about 90% of them) will be killed dead– probably resulting in a permanently dry mouth which can be medicated, the thyroid gland will get sideswiped possibly causing it to partially or completely fail this can also be medicated, hopefully the tumor will be permanently killed. For this last effect I was willing to put up with all the rest.

The doctor told me that I probably wouldn’t feel any effects for at least a week. He was wrong. My tastebuds shut down on day one. Things still smelled wonderful, but there was no flavor to anything. This took all of the joy out of eating. I’d pop chocolate into my mouth and all I would get was a smoothish texture. This effect was followed quickly by the shut down of my doomed salivary glands. At first I drank water all the time because my body interpreted my dry mouth as early dehydration. In the years since my body has recalibrated and accepted the dryer state of my mouth I fortunately have adapted to this without medication. But in those early days it was a shock. It became very unpleasant to eat any food that was dry.

Then my throat started being sore and it hurt to swallow. Instead of being a rewarding/happy experience food was a painful duty. I needed to eat to keep my energy levels up, but I didn’t want to eat. I lost weight. It wasn’t a good weight loss. It was “you look ill” weight loss. My body was eating up fat and muscle to stay alive. By that time my mom was staying with us. She tried to make food that would appeal to me, but nothing did. Howard would make protein shakes for me. I remember standing in the kitchen holding a shake and Howard standing guard over me to make sure I drank it. He knew that if he didn’t stand guard I’d probably leave at least half of it in the glass on the counter. I remember one time in particular that we stood there for at least 30 minutes; him coaxing and teasing, me laughing and not drinking. Finally I would drink it down, knowing that I needed to do it. But I fear I was often surly with Howard even though I knew that he was doing it because he loved me and it was for my own good. It makes me cry to think of it. How hard must that have been for him to stand there for so long with me so uncooperative. I’m sorry I put you through that Howard.

Toward the end of therapy those protein drinks were the only thing that was smooth enough for me to choke down at all. Swallowing HURT.

The effects on my skin unfolded just as the doctor predicted. By about week three the irradiated area started being a little pinker than the rest of my skin. The shade gradually darkened as the weeks went by. The techs and the doctor were trying to carefully make sure that the skin never reached a “hurts to touch” stage. But one thing they didn’t account for was the stripe of skin on either side of my neck that was getting irradiated by both kinds of radiation. Those stripes were darker than all the rest. They turned a dark purply red when the rest of my skin was just barely “red” rather than “pink”. We took some pictures, but they ended up blurry. Then at the beginning of my last week of therapy, I touched some of this dark red skin and it peeled off. I finished that last week with two stripes of open sores on the sides of my neck. Radiation really does make your skin fall off, go figure.

Then one day I was finally done with radiation. The red skin gradually faded. The sores scabbed over and healed up within a couple of weeks. My throat stopped hurting at about the same rate that the sores healed up. But it took my tastebuds almost 2 months to really come back online. It was easier for me to make myself eat during that time, but I’d only eat the bare minimum because eating wasn’t fun. I remember going out to eat with Howard just as my tastebuds began to work. We ate at Chevys and I sat at the restaurant table almost crying because I could actually taste the palente. About a week later we ate out again and I had crab legs. That was amazing because I could taste the ocean. It wasn’t “seafood” I was tasting it was “ocean.” I’ve never had that experience again. At the time I wondered if I would be permenently hypersensative to flavors, but I think it was an artifact of only partially functioning tastebuds. It was a neat experience though. Now I can taste everything I eat, but I wonder if things taste the same as they did before. I know that before the therapy I was much more inclined to sample foods as I cooked them. Now I don’t and I’m not sure why. Have I lost something that I don’t even know is missing because my memory is fallible?

Seven years later I look closely at my face and I can see a slight texture difference in the part that was irradiated. It looks just a little bit older. I know that the skin is dryer. The skin there sheds differently. None of that is something that anyone else would notice. I’ve demonstrated my ability to eat too much food and gain weight because food is yummy again. I have to drink something anytime I eat because I don’t produce enough saliva and food tends to get caught at the back of my throat. All of these things are minor annoyances. The biggest effect that still lingers large in my life is the one I paid the least attention to beforehand, the damage to my thyroid gland, which took more than a year to manifest itself. Dealing with hypothyroidism gets it’s own entry sometime.

I have been informed that my exposure to radiation increases my risk of breast cancer. Because of this it is recommended that I start having regular mamograms 5 years earlier than my peers. Theoretically that means now, but it’ll have to wait a few years until we can afford it. Mammograms are precautionary and since I have zero other risk factors I am choosing not to fret over a small likelyhood.

The tumor appears to be dead and gone. Years of follow up MRIs and appointments have shown no signs of it. At this point I feel free and clear of the tumor. Mission accomplished. All I’m left with now are emotional and physical side effects. Was it worth it? I believe it was. I especially believe it when I read the recent news story about a young girl who had a 16 pound tumor removed from her face. That could have been me.

In a world without radiation therapy or modern surgery techniques I would be dead now. Choked to death slowly by that tumor.