My Junior Year at The University of Catastrophe started in 2005 when MG progressed too far. In January I was too sick to chew and swallow food. By April I was in the hospital in a myasthenic crisis. I couldn't walk. I couldn't hold up my head. I couldn't move. MG was winning and I was losing. My life was spent in bed.
In the summer of 2005, my neurologist took one look at me and realized I was in big trouble. He referred me to oncology for treatment, a decision that saved my life. Myasthenia gravis is an autoimmune disease. Suppressing the immune system slows myasthenia gravis progression, but it is not easy. Not easy at all. I wrote about it in my book, Life Music: Lessons Learned at The University of Catastrophe in an essay called Monday.
Tomorrow is Monday. Tomorrow is chemo day. I've been through so many cycles of chemotherapy I know exactly what to expect. First I'll sign in at the desk and pay my insurance co-pay. Then a technician will greet me. I'll get weighed and sigh softly at the weight I've put on. Steroids and weight gain go together like wine and cheese. Then I'll sit down in the blood test chair and get a blood test. I don't like getting my fingers stuck, so I'll try and pretend I'm brave. Except, I'm not brave. I'm a needle fearing coward and I'll wince when the little needle pokes my finger. While the technician squeezes my finger, I'll watch my blood drip in a little plastic tube.
Then I will wait for my blood test results: white cell count, red cell count, platelet count and other blood counts that make sense to my doctor and baffle me. Assuming they're all in range, I'll meet with my oncologist in a little exam room. We'll talk about how things are going. Then it's treatment time.
I'll leave the little room and go down a twisting hallway heading toward the treatment room. Ever wonder why doctor's offices have twisting hallways? It's so patients won't escape.
In the treatment room, I'll pick a recliner. Hopefully, the one by the fish tank will be empty. I'll watch the tinfoil barbs swim. Then I'll look around at the other recliners. Sometimes another patient will want to chat. Or maybe I'll just smile at people. Then I will get out my headphones and portable DVD player.
My chemotherapy nurse will come over and smile at me. We'll talk a bit. I'll try to pretend there's a new magic chemotherapy delivery system that doesn't involve needles. Meanwhile, my nurse will clean off my skin over my port-a-cath. Then she'll stick the needle in my port. Ow! Did I mention I'm a coward? It's true. I try to pretend I'm not an oversized seven-year-old. Except, sometimes I am an oversized seven-year-old! I hate needles.
Too scared to move, I'll hold still, looking away from my blood that's running into the IV tube. Then I'll glance over, see a small pool of blood on a greenish piece of waterproof paper. Ew! Why did I look?
My nurse will flush the IV line in my port. She'll tape the IV line in a loop over my port, then connect my IV line to a big bag of saline and a little bag of steroids. After that my nurse will inject anti-nausea medicine into the saline bag. Then she will turn on a blue pump and I'll watch the IV drip for a second.
After that, I'll turn on my DVD player and start watching Star Wars. Movies keep me from frantically chanting, "There is a needle in my chest! There is a needle in my chest!"
While all I'm getting is anti-nausea medicine and steroids through the IV, I'll feel fine. Then for some inexplicable reason, a nurse will show up with clear chemotherapy in two huge syringes. The first time I saw the syringes, I thought she was gonna stick me with the harpoons and I just about leapt off the recliner. Now I know all that Agent Orange is going in my IV bag. I also know I'm gonna feel like crap 20 minutes later.
The first wave of nausea always comes on subtly. Do I feel sick? Nah, that's my imagination. Keep watching the movie. Then I'll start to feel really lousy. The nurse will bring me an Ativan pill. I'll let it dissolve under my tongue. Ten minutes later the nausea will fade, and so will my mind.
I don't clearly remember what happens after that. I know I finish treatment and my husband drives me home. I know I lie down on the couch in the den. But, I have very little memory of what goes on between Monday afternoon's treatment, and Friday morning when I come out of the fog. It's all a bit hazy because of my anti-nausea medicines. I always sleep a lot. I take medication every six hours. My mouth tastes horrible and no amount of brushing or rinsing removes it.
Between Monday and Friday during chemo week, I'm awake for two hours, asleep for four. Wake up, eat three crackers and a little chicken. Awake for one hour, asleep for five. I have no concept of what day it is. I feel startled on Friday morning when I come out of the chemo cave.
I feel a little better on Friday, but I don't have much of an appetite. If I eat too much, I'll puke. I found that out the hard way! The Saturdays after chemo I eat constantly. I haven't eaten much more than snacks in days. Ravenous doesn't describe how I feel Saturday. The metallic taste in my mouth fades over the weekend.
By the following Monday, I feel great. Well, great for me, anyway. My muscles work. I'm strong enough to play my cello and enjoy my life. I'm feeling healthier than I have in years. That week goes by. Another week. By Saturday, I'm having trouble moving around. Sunday I'll struggle to chew and swallow. And on Monday morning, it will be chemo day again.
One week feeling terrible, two weeks feeling better. I've done this so often, it's become as routine as putting on socks and that stuns me. How in the world can chemotherapy become a routine? I have a chemotherapy appointment tomorrow and I'm not dreading it, worried about it, or even upset. Right now, I'm upset because I'm not upset.
The medical conveyer belt keeps hauling me forward. I can rage, but it still drags me toward Monday. I can panic, but the sun rises Monday morning with my consent or without it. Perhaps blending chemotherapy appointments into my routine makes riding the conveyer belt easier. Perhaps it's my mind's way of going with the flow, because if I really stopped and thought about it, I'd be like George Jetson, yelling, "Jane! Get me off this crazy thing!"
Or perhaps I've added chemotherapy into my life like a toll plaza on life's highway. I pay the chemotherapy toll and get to continue on my way. When I'm traveling, I don't think about toll plazas. I think about the song on my iPod, the view of placid cows out the window, the rain clouds up ahead. Toll plazas are just a small part of the journey. Tomorrow, I'll go to my appointment, pay my toll and then continue on my life's journey. The tolls are worth it, because life is worth it.
-- From Life Music: Lessons Learned At The University of Catastrophe
(c) 2007 by Marie Smith
That was what I lived with for 18 months between 2005 and 2007. It was an attempt to push my MG into remission. It failed. My oncologist realized the intense pounding couldn't continue. So, she gave me a prescription for a far more gentle weekly medication: Methotrexate.
Methotrexate keeps my MG fairly quiet. I have hair now. I still take my pills on Monday and my Tuesdays are spent in the chemo cave. I still think of it as paying toll. Only, now the toll is very small. For this I am so glad. The University of Catastrophe class Chemotherapy and You is tough. I'm tougher. If you're going through it, you're tougher too. Promise.