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.

Sunday, August 2, 2015

Loud Silence

On July 22, my dog died.

A Little Bit O' Honey CGC, SDX August 26, 2002--July 22, 2015

I sat here, staring at my computer for 20 minutes, unable to come up with the next thing to say. I'm a word smith. Words are how I make sense of things. Here I am, lost for words. I'm lost without my dog.

My black cat, Sunshine, is sitting on a chair and looking out the window. I'm glad she is in the bedroom with me. Cats are family, no question about it. However, my relationship with my cats is not the same as the relationship I had with Honey. When my cat jumps up on my bed in the morning, she purrs and purrs, rubs her head on my hands and chin. Is she affectionate because she loves me, or because the food dish is empty? After I fill the bowl, Sunshine eats and disappears. Affection is a coupon exchanged for food.

When Honey jumped on my bed to see me, it was to be with me.
She followed me from room to room, not because she wanted anything. Honey liked being with me. She liked walking beside me, staying beside me. When I was sick, my family had to force her to go outside. As soon as they let her back in the house, Honey jumped on my bed beside me. Nurse Honey. Gentle Honey. Faithful Honey. For 12 years she was with me. Now, I am alone.

Steve still has April. Our weimaraner living with diabetes is still here. I still check her blood sugar (464) and correct her with NovoLog. I wake up in the middle of the night and check her blood sugar (38) and rescue her from the Sugar Reaper. I let her out. I let her in. I put food in her bowl, water in her bowl, insulin needles in the folds of skin between her shoulder blades.

I care for April, but, she isn't our dog. April is Steve's dog. It's Steve she wants when it's time to cuddle with someone. She follows Steve from room to room. April is a great dog, a sweet dog, a funny dog. I love April. She's just not my dog. My dog died.

Steve is on the couch, watching videos on his computer. April is stretched out next to him. I am in the bedroom with the door shut. I have a pillow on my bed where Honey used to sleep. No one is curled up on the pillow. No one is cuddled against me with her chin on my ankle. No one makes little wuffling noises when I open a bag of crackers. It's the silence that reminds me Honey is gone. I never realized how loud silence could be. Or how much it hurts to say goodbye.


I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

If you email me your personal information will not be shared without your permission and your email address will not be sold. I hate spam. Even with eggs.

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