Questioning the Answer

In August 2005 I started treating my myasthenia gravis using cytotoxic medication. I started an experiment that lasted until January 2007. It involved moderately high dose pulses of IV chemotherapy once every three weeks.

I wrote that so clinically. Reality was I spent six hours in the treatment room having chemo pumped into my veins. I spent the next five days on the couch. It took a full week to recover from the chemo pulse. One week of illness traded for two weeks of muscle strength.

One week sick, two weeks feeling better. One week sick, two weeks feeling better. We were hoping chemo pulses would put my MG in remission. When that photo was taken I had almost no white blood cells left and I was anemic. I lost my hair, most of my eyebrows and my eye lashes. Chemotherapy wiped out my immune system. It caused caused mild dementia. What the chemo did not do was put my MG in remission. We did 24 pulses and I never did go into remission. 18 months of medical torment for little gain. The experiment stopped in January 2007. My medical team changed me over to a new chemotherapy regimen. 

Instead of IV pulses, I take chemotherapy pills once a week. I've done this faithfully since 2007. Every Monday night I swallow a handful of tablets and on Tuesday I feel awful. The trade of muscle strength in exchange for feeling poisoned on Tuesdays has never been easy. I feel like I am holding a tiger by the tail. I don't like holding on, but I am terrified of letting go. I know what MG is capable of doing to me. I have been too weak to swallow, hold up my head, talk, move, dress myself. I have been too weak to get up from bed. I know MG. I also know that chemotherapy treatment is just as hard.

My last three chemo Tuesdays were spent on the edge of tears. Every inch of my body felt bruised. Every movement, no matter how small, hurt like being hit with a small ball-peen hammer. Nothing made the pain better. Lying absolutely still in bed, afraid of using a straw because it would hurt, or crying because my iPad hurt my arms, is more than I can deal with. It's more than anyone should have to deal with.

The treatment has become as bad as the disease. Once I got six days of feeling better. Now I feel chemo sick well into Thursday afternoon. Three days sick exchange for four days well. Is this a fair trade? Instead of enhancing the quality of my life, treating MG is lowering it.

As of 2012, myasthenia gravis is incurable. Medication cannot heal me. I already tried intensive chemotherapy and that didn't stop my MG. It remains catastrophic despite everything I have tried to fix it. I would be saddened by this, except I am too tired from 15 years of tiger wrestling to feel sad.

Right now more medicine isn't the answer. Thinking about my quality of life is the answer. I need to enhance my quality of life because for the past few weeks it has been too low. I have been tired and depressed because of the pain from chemo. It has become a shadow in my life.

Last Tuesday while I was lying on the bed next to my husband and trying not to cry, Steve suggested a chemo break. Evelyn came into my bedroom and suggested the same thing. Maybe they are right. Chemotherapy is poisonous stuff and lately I have been feeling poisoned by it. I have taken breaks before to give my body a chance to heal. Perhaps I need another break. My quality of life is too low, and it isn't MG that is causing it. Right now the treatment is as bad as the disease. I am in a tough spot. It is a good thing that I am tougher.