Second Day of Infusion Therapy
THAT WAS THEN
In 1999, after visiting three hospital ERs for nausea, vomiting, dizziness, and tinging in my face, I was diagnosed with a nickel-sized demylenating lesion near and actually in my brain stem. (Nerves are covered with a protective myelin coating, and when that coating comes off, inflammation is produced in the surrounding tissue, causing a “lesion” or spot, which is NOT a tumor.)
My condition was considered inoperable. A number of doctors at various hospitals and finally at Harper Hospital and Detroit Medical Center finally determined that it was a demylenating lesion and treated it with a burst and taper of steroids that shrunk it immensely, giving me back my life (for a time I was unable to walk or care for myself in any way, and my vision was double. I could do nothing but lie still in an effort to avoid unrelenting vomiting.)
The steroid treatment was dangerous but highly successful. For fifteen years, I’ve lived with MS-like symptoms but have managed life quite well, traveling, speaking, consulting, and writing.
THIS IS NOW
Many of you already know that just before Christmas I went to my family doctor because I was experiencing pain and tinging on the left side of my face. It felt to me as if a virus was traveling up my trigeminal nerve in my face. The pain was quite annoying. Actually, it was severe.
My doctor gave me an anti-viral medication but cautioned me that I would probably need to visit the ER for further testing. Within 48 hours, I acted on that advice. I felt truly unwell, and I’d been experiencing extreme fatigue for months, as well as other symptoms that were reminiscent of my episode in 1999 that had landed me in the hospital.
Doctors did, in fact, find another nickel-sized lesion in the identical location in my brain. They diagnosed it as a glioma–a very insidious diagnosis, and scheduled me for a craniotomy and resection in order to remove as much of the lesion as possible for biopsy.
They were able to remove 20% of it–the other 80% was too deeply in the pons of my brain and too dangerous to get to.
Nearly a month later, I’m still without a solid diagnosis. Docs have determined the lesion is demyelinating and NOT a glioma, which is hugely positive. But my biopsy, which was sent to Mayo Clinic, was inclusive for a specific diagnosis–for instance, MS, which is a specific demylelinating disease.
So where does this leave me?
1. My neurologist has referred me to Mayo Clinic for a second opinion.
2. In the meantime, I am undergoing steroid infusion therapy for five days, in an effort to reduct the inflammation and painful trigeminal neuralgia being caused in my face.
3. I am undergoing further tests–a Visually Evoked Potential, a thoracic MRI, and possibly a spinal tap. I am also being referred to a hematologist because of elevated protein in my blood.
4. Waiting on God, as we make preparations for a trip to Mayo Clinic in the dead of winter.
5. We are also juggling my medical trips with Dan’s and Wanda’s which is quite a challenge, given our combined medical challenges.
6. Leaning into the faithfulness of God and his unchanging goodness.
7. Learning new things about grace, pain, stillness, suffering, silence, change, and God’s love in the places we often fear most. He mercies are new every morning. This is not easy, but why would it be? I do not discount the challenge, but I embrace my only HOPE in this place.
What about you? In what ways have you found new mercy and grace in the hard places and suffering?