Showing posts with label Waldenström. Show all posts
Showing posts with label Waldenström. Show all posts

Thursday, January 24, 2019

Cancer Notes on a Thursday Morning




Dad. He always gets up in the morning before Mom. He turns on the coffee pot, warms up the house and makes sure there is honey already in her coffee mug because she can no longer squeeze the honey container. When he hears her stirring to get out of bed, he helps her in any way she needs: sometimes she can't sit up; sometimes she needs help standing; sometimes he finds she's already made it into the bathroom and just can't open the damned toothpaste. He has put her first-above everything else. 

Mom is in the hospital right now. Dad and I took her in yesterday after a week of watching a disturbing, rapid decline in overall wellbeing. She has fucking cancer in her central nervous system. She is 71 years old and for the past 10 years has battled a rare form of (incurable but treatable) non-Hodgkins Lymphoma, called Waldenström Macroglobulinimea. Two years ago things shifted dramatically when the cancer cells crossed the blood brain barrier into her cerebrospinal fluid (CSF) forming a crazy-rare mutation called Bing-Neel Syndrome. What research there is on Bing-Neel, points to a two to three year mortality rate from time of diagnosis. Mom is in year two. So, yeah. That's what is happening.

The options are to try what is called an Ommaya Reservoir-a port placed in the skull-for chemotherapy drugs to be distributed directly into the CFS...or to do nothing and eventually connect with Hospice. Yesterday, Mom decided she isn't quite ready for Hospice and wants to try the Ommaya Reservoir technique, which her oncologist says has roughly a 50/50 chance of improving how she feels. Note also that this will not cure the cancer. She still has stuff she wants to do and places she wants to see. She says she's not done hiking or traveling or being with her family. This is phenomenal to me and probably to Dad and my sister too, since she struggles to just walk around the house due to severe cancer-induced neuropathic pain in her legs and bouts of unshakable dizziness. But, this is Mom: determined, pissed off at her body, and wanting more time. 

This morning, Dad and I sit quietly waiting for the sun to rise, drinking our coffee, reading our news feeds, thinking about our day ahead to be spent at the hospital, both of us feeling Mom's absence but not speaking about it so much. I put her coffee mug back in the cupboard, and the honey sits on the counter used only by me.