It could not be painless.
Last Thursday, my girl left the house, for the very last time.
It was a cloudy and cold afternoon. I remember singing in the back of my head “Mr. Ambulance Driver” from Flaming Lips while we crossed town in the usual heavy traffic at the end of the day. I just asked to keep the sirens off.
I finally felt the pain. I had been struggling so hard, so involved in the turmoil of an overflow of information to manage, that I probably purposely left very small room for grief and sorrow. Now it is coming, slowly and steady.
I tried to the very end to keep things going in at home. However, her status declined so fast that every day a new measure should be taken to avoid major complications. In a matter of days she became bedridden, lost her ability to chew and one day later to swallow deliberated. I was using a syringe to feed her.
Her family was begging me to hospitalize her from the beginning. I refused to consider this option while she was obviously aware of her surroundings, and mainly while we could do every comfort measure equally or better than a medical facility.
However I could not ignore that despite being the primary caregiver, I share this task with her mother which is obviously devastated by the process. Things sounded eminent, and I was not naïve to suppose it should end peacefully. Despite this is the thing we would like most, I know it could be way more intense than some people experience. I think I can manage it, but I am certain it would be asking too much for a mother to watch an endless seizure or any other of the possible complications we are exposed at this point.
So it is. She checked in at the same hospital we had been ten months ago. You know you are really in trouble when every nurse knows your name and your story.
We are taking shifts by her side.
She is not very different from what we had being seeing at home. Only news is that ironically Avastin+CPT11 seemed to work at least partially. The tumor is probably smaller or at least stable compared to one month ago when her clinical decline began. We though her screaming and moaning could be a reflex of intense pain caused by intracranial pressure. It does not seem the case now. There is little edema, but her tumor is highly infiltrated at the structures that connect both hemispheres, and it is moving toward the other side. So her symptoms are probably due the healthy tissue destruction promoted by tumor progression.
We stopped chemotherapy and slowed down corticoids. Tons of sedatives and pain relief are at least given her a chance to rest. Every moment of awareness is fulfilled with moaning.
I feel terrible doing the math based on other experiences and references like brainhospice.com. She presented probably every little symptom of the scale less coma.
Two days ago was the last time she opened her eyes and looked at me. She was pretty scared due to a last time small surgery to rescue her port cat – damage by a dumb nurse at her first attempt to use it.
She said: “Motherf****s! Motherf****s! I almost died!” – grab my hand and felt asleep for hours.
Sorry for the long post – as always – I usually do not vent. But in this new scenario I am gaining too much time to think and feel, something I was getting used to avoid.