She’s not herself anymore and this time, she is not bouncing back.
Watching the situation from afar is dumbfounding, and I can’t even imagine how my family must be feeling dealing with mom directly. Six weeks ago she was talking, walking and making plans to conquer the world. Today, she sits in a hospital bed confused, not knowing who is whom or why are all those people going to see her. The decline was steep, relentless and ruthless. First the seizures became more frequent. The convulsions manifested in the strangest way; she’d laugh for a few minutes, stabilize, and then cry for a few more. The seismic activity in the brain matter was destroying all the memories edified throughout the years. Her brain must look like San Francisco post 1989 earthquake. (See picture above.)
My sister flew in to assess the damage a few days earlier and her findings were disconcerting. A few days before she seemed fine, and now all the progress made was lost. The system was rebooting itself, a second time after surgery. Defiantly, the doctors scramble to adjust medications in an effort to save whatever information is still available. The smaller yet more frequent shockwaves are permanently causing damage to her communications centers, diminishing her chances of recovering with each passing crisis. Blame the process. By the time she finally starts chemo and radiation there may not be much mom left to save. This situation is waaay above our pay grade and although the Colonel had contingency plans, she missed a crucial point of this whole scenario: her income disqualified her of much needed programs and aid. The cherry on top was having to pay out of pocket for services others qualified for but didn’t need urgently.
Timing is everything.
Between family and friends we have split her at home and in hospital care duties, making sure she is always in the company of her favorite people. Day and night nurses were hired to cover whatever shifts lacked volunteers until the full 24/7 care package shifts were negotiated. Coordinating from my location in the Pacific Northwest has been a challenge but thus far my sister has taken the remote command with flying colors. Twenty nine years ago mom was giving birth to her, and in the past few months this same child was spending most of her energy preparing to confront a lifetime without her. It’s not fair! We were so close to the goal. Chemo and radiation treatments would have to wait until she was stable. The window for therapies that could extend her life and improve its quality was closing. I’m disappointed. The miracle wasn’t meant to be.
I would not wish this on my worst enemy.
Just when we were losing all hope that she would recover, her communication skills started to return. First, we heard her state her name and age clearly. Little by little the names of nephews and nieces were recited as if they had never been forgotten. When she recalled my sister’s name, her brain scan registered seizure activity. Panic set in. Could knowing sis is there trigger her? Same phenomenon was observed when she remembered my name. 🤔 Tears stream down her cheeks every time a tremor hits. So very out of character yet completely understandable. Being trapped in your own consciousness doesn’t seem enjoyable from our end, let alone hers.
Moments of lucid clarity make me uneasy. This uphill battle can end at any moment, especially since the cancer is aggressive and most likely spreading to adjacent healthy cells. Whatever it attacks next could leave her heavily impared, bedridden. The fact that she is on industrial strength doses of the anticonvulsant medications doesn’t give us much solace. There’s not much left to do other than watch her get worse by the minute. We continue to fight today to win tomorrow, to gain some ground and protect what’s left of her recollections, emotions and motor functions. The extended family and friends pray for her swift restoration. I’m caught between preparing for the worst and expecting the best possible outcome. Either way she dies, the difference is when. This is new uncharted territory for all of us. We don’t know what’s right, and what’s easy anymore.
My armor is starting to show a few cracks, however, we plan to go down swinging. Lilo may be jobless but the task at hand is more important and hopefully somewhat rewarding. Not sure if its safe to say every minute spent with her is a privilege because its tough seeing her turn into a shell of herself. The most we can do is stay focused on the goal of keeping her safe, joyful and dignified. Mom, I’ll keep track of the broken pieces, of the missing parts of you. Focus on putting the puzzle back together, on making yourself whole. The trail may be dark, uneven and badly illuminated but it’s nothing you haven’t conquered before. Don’t waste time worrying about what could have been. The time we got was enough, and the experiences we shared will last a lifetime.
Lilo will persevere, I’ll see to it. We’ll be angry and discouraged at first but eventually the pendulum will swing in another direction. It will be a demanding, time consuming process but we will emerge victorious. I’m angry at life, at the cancer and at you but all that will be resolved once we get through this battle. I promise I’ll do right by you as you have done for us. This is not the end even though it may appear like it.
Mom, hang in there. I’ll see you soon…
Mrs. Enginerd - Nerd Whisperer 