Tag: MG

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Chapter 1: The Backstory–Life Resumed

I came home from hospital weighing eighty-seven pounds, recuperated over the summer, and entered high school in the fall to catch up on the classes I had missed the previous year due to hospitalizations. I graduated with honors three years later, squeezing four years of high school into five.

The surgery had been successful to a great degree. I was not cured of MG; there is no known cure for MG to this day. But I was alive and functioning once again, not on the level of someone without MG, but doing amazingly well, for me. I had a new lease on life.

After graduating high school I went away to college. This must have been a big step of faith for my parents who wouldn’t be there to help me if things went wrong, and they sometimes did go wrong. I have had a few life-threatening myasthenic crises, precipitated by a cold or flu, in which I became so weak I couldn’t talk, swallow or breathe. This is not good! These crises usually meant hospitalization and life support, meaning a tube down my nose or throat so I could breathe with a machine’s help.

In spite of these things I continued with life. I loved life! I went to a Bible college in Florida and there met the man who would become my husband. We were married two years later while in college and we started our family. In the next few years I gave birth to two healthy sons and together my husband and I raised them.

Miracles to us, miracles all. That I could marry, bear children and raise a family with my health condition is miraculous to us. There were, indeed, times when I could barely function: hands too weak to pin a diaper, arms too weak to lift my baby, eyes too weak to safely drive because of double vision. Randy, my husband, took over much of the care of our two boys when they were toddlers. He bathed and dressed the boys, cleaned house, cooked and bought us a dishwasher (back in the days when these were not household staples!).  He took the boys out on his day off once a week so I could have a break and rest, and they had great times together doing dad and son stuff.

Fast forward forty-two years from the time of my MG diagnosis at fifteen years of age. I am now sitting in the office of the surgeon who had done my biopsy and just had the wind knocked out of me because he just told me I had breast cancer.  All the lessons I’d learned over the years I now pulled forward as I was hit hard with this unwanted, frightening news of breast cancer; cancer that could kill me.

It is out of these and other life experiences I write. This path is not the way I would have chosen. But since it has been my life, I want to share with you what I have been learning about going through suffering—thriving through it, taking the broken pieces of my life and making something beautiful from them.

But I didn’t do it all by myself. And that’s what I want to share with you.

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Chapter 1: The Backstory–The Story Continues

The next few months following my MG (Myasthenia Gravis) diagnosis became a blur of hospitalizations, tests, and adjustments to medications which had very unpleasant and sometimes embarrassing side effects. Instead of getting stronger, however, the weakness and debility increased. Within six months of my diagnosis I was unable to go to school, feed myself, or lift my arms to comb my hair. I became bed bound.

Back to the hospital once again, this time for two weeks of bed rest and then a major decision by my parents to allow a surgical procedure which seemed to help some MG patients. It would mean the surgeon would open up my chest, breaking the sternum (breastbone), and remove the thymus gland, which lies above the heart. My parents were told the prospects were slim I would survive the surgery, and on top of that, it was uncertain the surgical procedure would even benefit me if I did survive. But there were no other options for me. Or for my parents.

Looking back, I cannot begin to imagine the agony of my parents. The closest I have come to this was when our youngest son was hit by a car while riding his bicycle. What a nightmare, until later that day after several tests were done, we knew he had no serious injuries; he was fine, just some road rash. His helmet took the brunt of his head colliding with the windshield of the car that hit him. God mercifully spared him.

My parents, however, had watched my decline from a healthy, active teenager to one who now was fading from this life day by day. The prognosis was grim. Little hope was given them.

I remember sitting propped up in the hospital bed, my parents and the doctors in the room asking me my opinion about the surgery they were proposing. Was I willing to go to surgery? I don’t remember all they told me, only that this surgery might help me. I gave my assent almost cheerfully. My optimistic nature, coupled with my ignorance of my real condition, made me hopeful this surgery would make me better. What could I lose? Little did I know.

A few days later I awoke from surgery with an elephant sitting on my chest. Well, it felt that way. At that moment, though I don’t think I’d ever taken anything stronger than an aspirin before, I was glad for pain medication. I was cold and realized my chest was exposed, an embarrassment for a young lady of fifteen years. But I had a raw incision about eight inches long in the middle of my chest, with tubes protruding from under my rib cage—one for the left lung, one for the right. When I tried to speak to my dad standing there next to my bed, a different kind of pain etched on his face, I discovered I couldn’t talk. I had a tube in a hole in my throat to help me breathe, a tracheotomy, he explained, through which I was hooked up to a breathing machine. It pumped air into my lungs, breathing for me since I couldn’t breathe on my own and this made it impossible for me to talk right then. So began sign language, and writing in place of speaking. I learned the frustration of not being able to clearly and simply communicate.

For weeks after surgery I was in and out of consciousness in the ICU, those tubes protruding from my lungs, and a hole in my throat. Finally, after what I thought was a couple of weeks, I was released from hospital and taken home. It was not until years later, in a conversation with my mom, that I found out I had been in ICU for six weeks. I was shocked! I had no idea I had been there that long.

The reason I was there such a long time, my mom said, is because I had almost died. I was on my way out of this life, declining daily. The doctors had known this was a possibility and had tried to prepare my parents. They were doing everything medically that they could do. Lots of people were praying for me, though, many I had never met. My dad had been “wrestling” with God for weeks to save his little girl, but on my worst night when doctors didn’t think I was going to live to the morning, he finally gave me up to God for Him to do with me as He pleased.

The night he let go of me and let God have His way, my mom related, was the turning point in my recovery. I began to improve.