My Personal Observations
The first sign that something was wrong was insomnia -- not just sleeplessness, real insomnia. I called a sleep center and it was a two-week wait. The morning I went to see a doctor there, my eyes had double vision. The doctor referred me to an eye doctor or a neurologist. The first appointment I could get was through an eye doctor. He instantly recommended an MRI. The following Monday, I had the results.
Then, came a slew of doctors. I found a young doctor that I believed in. He put me on a course of steroids. We were sent home to wait for three very long weeks.
The steroids didn’t work. That’s what I remember last. My memory was wiped clean until June 2015. According to Juliet, I was admitted at the UNMH hospital and had a biopsy. At that point I was failing considerably. They put a port into my chest to administer chemo. That night they found me “non-responsive”. I was rushed into an emergency surgery.
They told Juliet I made it through but that I might not be able to talk for some time.
Fast-forward several months, and six rounds of inpatient chemo plus one round of consolidation chemo. I was hospitalized several due to an infection and when my immune system vanished following the consolidation chemo. I went through speech therapy and two types of physical therapy. This was a complete blur to me.
On April 26, 2015, my doctor told me I was in remission.
I was as weak as a newborn puppy. The chemo took its toll on me. I had to rebuild completely.
The things I’ve learned:
What is aphasia?
Aphasia is a communication disorder that results from damage or injury to language parts of the brain. It's more common in brain cancer patients.
Aphasia gets in the way of a person's ability to use or understand words. Aphasia does not impair the person's intelligence. People who have aphasia may have difficulty speaking and finding the "right" words to complete their thoughts. They may also have problems understanding conversation, reading and comprehending written words, writing words, and using numbers.
What is apraxia?
Apraxia is a poorly understood neurological condition. People who have it find it difficult or impossible to make certain motor movements, even though their muscles are normal.
Apraxia can occur in a number of different forms. One form is orofacial apraxia. People with orofacial apraxia are unable to voluntarily perform certain movements involving facial muscles. For instance, they may not be able to lick their lips or wink. Another form of apraxia affects a person's ability to intentionally move arms and legs.
With apraxia of speech a person finds it difficult or impossible to move his or her mouth and tongue to speak. This happens, even though the person has the desire to speak and the mouth and tongue muscles are physically able to form words.
Lucky me! I had both!
Update: I had a stem cell transplant in July 2016.
I have to rebuild... again. They say I'll regain my energy around the one year mark. And, that my tickles in my legs will fade. I had three seizures after my remission so I am not able to drive until 6 months is up (April 26th, 2017.) I will be on seizure medication for the rest of my life.