Thursday, August 27, 2015

17 and 10

I'm 17 years cancer free. If my scar was a person, it would be a senior in high school. My scar would be borrowing my car and bringing it home without putting gas in the tank. My scar would be grounded from driving. My scar would be standing in the kitchen giving me sass because I won't let it stay out all night with its friends. Ha! 17 years! Wow.

Even more amazing to me is I'm celebrating 10 years of chemotherapy. No, not 10 years since I finished chemo. Ten years of continuous chemo.

Every so often, I'll come across an ignoramus on the internet (shocking, I know) who claims that chemotherapy is nothing but poison. Cancer doesn't kill people, chemotherapy does. These are the same people who claim diabetes is curable with okra water. Or was it lemon and baking soda? Or is it apple cider vinegar? Colloidal silver? No, silver turns people blue.

Before I started chemotherapy, myasthenia gravis wrecked my life. I lost the ability to chew and swallow. I couldn't hold up my head. I couldn't walk. I slurred my speech. MG compromised my ability to breathe. I was bedridden. My life was a living hell.

Then in August 2005, I started moderately high dose chemotherapy. With weeks, the antibodies circulating in my blood that attack my nerve/muscle junctions started dying. My muscles got stronger. I could chew and swallow again. I could hold up my head. I could walk. I could speak. I could breathe. I was no longer bedridden. My life opened up wider and wider each week.

I was on infusions for 23 cycles. We hoped it would push my MG into remission, but after 18 months, the experiment was a failure. MG roared back to life between infusions. In February 2007, I switched from infusions every three weeks, to weekly pills at home. My weekly pill cocktail keeps MG from destroying my life.

I know exactly what would happen to me if I stopped treatment. The chemo knocks down the antibodies in my blood, then they rebound by the end of the week. By Monday afternoon, I feel MG weakening my body. Tuesdays chemo kicks my ass. Wednesdays, I kick MG's ass.

Just how much chemo helps me became obvious when I skipped a week. I had a severe cold. I needed my immune system to be strong enough to knock it out, so I didn't want to take chemo. After missing a week, I sat down to eat a blueberry yogurt. I held a plastic yogurt cup in my hand and a plastic spoon in the other. Everything was going fine, until the plastic spoon was too heavy to lift. I stared at it in shock. How is it possible to be so weak a plastic spoon feels as heavy as a car?

My brain screamed at my arm, "Quit screwing around and pick up the damn spoon. It's not heavy! A newborn can pick up a plastic spoon."

My arm did not move. The spoon was too heavy to lift.

I am not paralized. I can feel my body. But that stupid little gap where nerves tell muscles to move, failed. No matter how much my brain cursed and swore, the little plastic spoon was too heavy. Tears filled my yogurt container. I bolused for the yogurt and I was too weak to eat it. What a lonely moment that was for me.

Who knows what that feels like? Who knows what it is like to be so weak a plastic spoon is heavier than a box of bowling balls? Fourteen in a 100,000 people have MG and I feel so alone. Sometimes I feel like I live on the wrong planet. A moon astronaut in reverse, trapped on a world where gravity is too strong for my body to function. And the loneliness I felt as a I stared at a plastic spoon overwhelmed me.

Then I remembered chemo day. I remembered I would take a nasty pill that tastes like a rotting fruit. I'd take chalky pills, and flavorless pills. I'd curl up in bed and sleep most of the day. But, after that... After that I could use a plastic spoon again. I could cook dinner for my family. I could walk April the weimaraner around the block. I could drive, and eat, and play the cello. I could have arms and legs and a jaw that moved. Chemo would fix my misery. Chemo would give me back my life.

Chemo is a gift! It's a toll booth on the highway of life. It's not a disaster. It's a gift that makes everything worthwhile.

Ten years. Ten years. Ten years. I can dress myself. I can feed myself. I can talk. I can brush my hair. I can play my cello. I can drive. I can go, see, do, walk, play. I can. I can live. Insulin and chemo made my life better in thousands of ways, millions of ways. I am so grateful I have no words.

I am sitting here, 17 years cancer free, and 10 years as a chemo warrior. Right now I am aware that little things matter. Like, being able to lift a plastic spoon, and eat yogurt instead of tears.

1 comment:

  1. Wow, what a story! I've really only heard about MG from you, so thanks for describing it - not only in scientific terms, but in terms of its effect on your life - so vividly. Cancer is very close to taking a family member of mine from us, and though her story and place in life is quite different than yours, any glimpse of being on the receiving-end of chemotherapy is certainly appreciated.



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