Thursday, September 5, 2013

Why radiation treatment is like being pregnant, except for the important part

Both of my pregnancies were relatively easy. I have been blessed. Friends of mine were throwing up for all nine months, or were put on bed rest and had to rely on the kindness of friends and family in order to keep life in order for the duration of their pregnancy.

I would like to think that I now know a little bit how they felt. Let me explain my experience with undergoing 14 sessions of full brain radiation, as well as targeted radiation on my lower spine. My radiation treatments were last April and May, but I've been wanting to write down some thoughts, memories, and comments, both so that I can remember and reflect, but also to offer a guide to anyone going through anything similar.

When radiation started, I could barely move. Cancer had collected and created a huge mass on my lower spine, which had eventually resulted in a spinal fracture. It hurt to bend over, to put weight on my back/legs at all, to stand up, to lie get the picture. As I walked into the radiation center, I leaned on Adam so that I didn't have to use my walker. Like most days, we were the only ones in the waiting room. We filled out paperwork and I received my own personal card to scan when I came in everyday. The nurses in the back would then see that I was there and would come get me when I was ready. We had come in for prep a few days before, when they had made a creepy mask of my face and had discussed the whole procedure with the doctor.

I have to say that all the techs and nurses were amazing. The whole experience was not comfortable, but they tried as hard as they could to help in any way possible. It was a little bit odd, the whole thing. I saw these people 5 days a week for nearly 3 weeks, but we didn't really know each other, so we'd ask each other generic questions and make small talk, but I don't remember their names (terrible person here).

I always enjoyed sitting in the center's waiting room. Gossip magazines are my guilty pleasure, reserved for doctor's offices, and they had a goodly supply, as well as interesting National Geographics and Reader's Digest (Is your marriage healthy? Take the research-based quiz! Verdict: Adam and I are doing great, but we need to take vacations together without our kids. Darn). Adam probably thought it was weird, but I always wanted to sit by the fish tank. The first day I thought "what's the point of having a tropical fish tank if all your fish are tiny and black?" but in the coming days I noticed a large, brilliantly yellow fish who always lurked behind the coral. She (yes, I'm arbitrarily assigning her a gender) gradually became more confidant (or I projected increasing confidence onto her) and by the end of the 14 days, she would greet me at the front of the tank when I came in. Until that point, it was a fun hide-and-seek to keep my mind off the coming treatment.

Before my first treatment, I assumed that I'd usually just drive myself down, do the 15 minute radiation thingie, and go home. Easy as pie. But as soon as I was left alone on the slab, the stickers on my abdomen lined up perfectly with the red lighted lines coming from the machinery, and the blast doors had closed behind the techs, I knew that I would never come to do this alone. The loneliness in that room as the machinery made noise and twisted and turned around you was overwhelming. Lying there, I thought of the fact that what they were doing to me was so harmful to humans that everyone else had to lock themselves out via the foot-thick door. The loneliness never went away, although the panic that began to build after those first couple awful days eventually lessened.

Radiation has a smell. Or at least it did to me. It only happened when they were irradiating my brain, not my spine, so maybe it was just that somehow my olfactory nerve was triggered, but I can still conjure up a sickly sweet smell vaguely reminiscent of lemon cleaners and salty beaches. Still makes me nauseous.

I'm being melodramatic. It wasn't that bad, and it helped me a great deal. The reality is that those first few days were awful. I went through the treatment, felt fine, and went home. I spent the next 6 hours throwing up every hour or more. We did some research - people receiving full brain radiation sometimes get nauseated because of swelling in the brain. I was on some anti-inflammatory steroids, which was supposed to counter that, so the internet suggested playing with the timing of my meds, to see if we could manage the nausea. The next day was no better. Fortunately, that was a Friday, so I got a weekend off. Monday loomed in my mind and the anxiety nearly overwhelmed me. That morning, before I went in for treatment, I called ahead. "Is this normal? Do people just throw up for weeks?" They promised to get me some meds.

And then I was fine. Zofran, the best friend of pregnant women and cancer patients everywhere. Dissolving that tablet under my tongue was magical. Any nausea dissipated in minutes, and the future seemed much less bleak.

It became normal to hop in the car with Adam at quarter to one everyday to drive down to the center. It was our little date. We'd stroll into the waiting room like we owned the place, scan my card to check in, pick out our magazines of choice, get settled in front of the fish tank as I said hello to my sunny fish friend, and wait. It never took lawn for a tech to appear and usher me to the back rooms. I'd hop on the slab, expose my stomach stickers, and get all lined up. The techs would leave, the doors would close, and I would keep my eyes closed while the machinery did it's business. The doors would open, techs came back in and put my facemask on, lather, rinse, repeat. Afterwards, I'd go fetch Adam and we'd head home.

After a week or so, the exhaustion I'd heard would happen happened, and I'd spend my afternoons dozing in a lazyboy recliner. My hair started coming out in clumps on day 10, so we shaved it off to prevent our drains from having to do double duty. Getting ready to leave the house became incredibly easy without hair to do. Just grab a cap and go. And I could eat! It was fabulous, especially after being worried that I'd spend 3 weeks cautiously nibbling saltines. I ate anything and everything, and I think actually gained a few pounds over the whole period.

For some reason, the last couple of days of treatment ended up with some nausea that Zofran didn't beat, but overall, it was so much better than it could have been.

So, here's where I sum up the whole experience. Having whole brain radiation is like being pregnant because you start off by losing your lunch daily, doctors take pictures of your insides halfway through, and you want to sleep all the time. Of course, certain aspects of the whole experience are the complete opposite of pregnancy. Unlike pregnancy, where I ended up the nine months feeling like a beached whale, I couldn't move at the beginning, but by the end I was hopping on and off the table like a spring chicken (which, while not nearly as good as having a new, beautiful baby to show for your trouble, was pretty amazing to me at the time). Also, most people's hair gets thicker during pregnancy. Me, not so much.

As a postscript, I would like to mention that I don't think the nausea I experienced during radiation in any way equates to some women's horrific experiences with nausea during pregnancy. However, chemotherapy is a different beast and now I truly, truly empathize with anyone who have horrible nausea, regardless of the cause.


Rachel said...

I love this post! You and the fish tank...this is the most fantastic thing ever. I am so glad that you are feeling a bit better. I think about you often and pray that you are doing ok. (well, ideally better than ok...but you know...)

Love you!

Jamie said...

Wow, thank you so much for writing and sharing this. It was so interesting to see the experience from your perspective. You are such an incredible writer and all the detail, from the creepy face mask to the smell to the gossip mags to the severe loneliness in the room really helped me to imagine what it must have been like in a small way. And I agree with Rachel--the way you won over that elusive yellow fish was amazing.

I admire you so much, Bonnie--always have. Sending lots of love and light and prayers your way.

Erica said...

You are a very good writer. Thank you for sharing! And you made me hungry for donuts. :) I wish someone had warned me it was national donut day.

Mom Walton said...

Thanks for the information about your radiation treatments. I love to read your blog. I hate to see you hurting or miserable. Love you

Kristine said...

Thank you for sharing your experience Bonnie. You are a good woman! To take your experience and be so empathetic for others is just beautiful. I just love that your focus is understanding other people's trials instead of feeling sorry for yourself (which you have every right to do.) You are inspiring. I just love you and we continue to pray for you multiple times every day.