Tuesday, July 24, 2012


Mom's health has continued to decline. Every day for the last two weeks, her symptoms have continued to progress dramatically from day-to-day. She is hardly able to walk anymore, and when she does, it takes every ounce of focus and strength. She's lost sensation in her abdomen and no longer has the ability to sense when she needs to use the toilet. Her ability to speak is diminished -- her speech is garbled and the volume of her voice is very low. We contacted her neurologist (a specialist in Lambert-Eaton myasthenic syndrome, the neurological comorbidity she struggles with) who increased the clinical trial drug she's taking to the maximum dose, but the increase in medication was no help at all.

She wondered if she'd had a stroke, and after a fall on Friday morning, she spent the weekend in the hospital. The MRI and a couple of other tests came back indicating no significant changes, so it was believed that her symptoms were related to the LEMS rapidly progressing. Though still in a very weak state, she was medically stable, so I checked her out of the hospital on Sunday and we high-tailed it to Houston for a Monday morning appointment with the specialized neurologist.

The doctor examined Mom thoroughly. She verified Mom has declined considerably, and she said there was a remote chance we were experiencing could be attributed to an extremely rapid progression of Lambert-Eaton. However, she strongly believes that this progression is a metastasis of the cancer to Mom's spinal fluid, a disease called Leptomeningeal Carcinomatosis. The associated symptoms and the speed of progression are strong (nearly textbook) indicators. The neurologist requested the oncologist do a lumbar puncture to verify the diagnosis, but today he refused because the test is painful, risky, and unreliable, and even with an official diagnosis, there are no treatment options available to her. There are no other available treatments for LEMS (besides the clinical trial drug she's taking -- 3,4 DAP), and in her declined and fragile medical state, there are no additional treatments available for the Oat Cell Carcinoma. The time has come to hire a hospice care agency, which I will do tomorrow.

Prayer is our most immediate need. This is an intensely difficult time for Mom and for us. She's been feeling a bit isolated since leaving her roommate and moving far from her friends and coworkers. Helping her through that sense of loss is a priority, especially now. We need loads of all manners of grace and strength right now. We're swiftly being swept away towards the dark night of the soul.

"Be strong and courageous. Do not fear or be in dread... for it is the Lord your God who goes with you. He will not leave you or forsake you. It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed." -- Deuteronomy 31:6,8 ESV

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid." --John 14:27 ESV

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." -- 2 Corinthians 4:16-18 ESV


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