DAY 21

 Day 21, East 8, Leukemia floor. Slight knock at the door; they come in whether you say to or not. Why do they bother knocking? It's a ridiculous formality. I had to look at the calendar to confirm how many days we have actually been here. I remember going home once because the house was empty Christmas Day. I walked in to a disaster, but I was determined to get a shower, grab clothes and head back up. My mind worked to compartmentalize the mess so I could leave sooner but to no avail. Cleaning was automatic and maybe a magnetic pull to give me just a little more time away. 21 days of surreal. Testing, diagnosis, chemo, mucositis, pain, sleeplessness. Sleeplessness. If the villain's of the world want to conquer, simply enact tactics to prevent sleep. Lull your prey into deprivation psychosis. Very effective. I am not sure that I have completely processed this turn of events. I know this will pass. I know we are getting the best care. I know this will be a chapter in our lives. It's just dreamlike to wake each day in a pull out couch, walk down the hall, passed the nurses station, down the next hall to use the potty, disheveled and groggy from so many visits in the night, masked and exposed. "It's temporary", I tell myself, but the long walk down the hall stretches each day. Irrational thoughts creep in; "Did I say good morning?" "Was I polite?" "Do I have a bra on?" Waking in my own bed, I roll out, schlep to my own toilet, not a care in the world. I consider myself lucky when watching my sweetheart work the other end. He spent the first weeks in underwear, arms welted in bruises from unsuccessful IV's, PICC line trials, Central line insertions. The lining of his GI tract raw from puss and sores accompanying the chemo. Joyous bathroom time that leads to uncontrolled chills and exhaustion. Who would have thought dumping a load would require a 2 hour nap? Sleep. Such a precious commodity. "He needs more sleep. Isn't there a way we can combine visits to cut down on interruptions?", my voice a broken record to each shift change. Someone finally heard us and banned night checks, but the vultures hungrily pace outside the door for the first streaks of morning, then barge in to check the list off. I wonder when the human becomes a list? When does the life they are trying to save become the paper trail of meds, checks, blood draws, weigh ins, poking, prodding, torturing....I know but it's true. It's torture with a smile and kind little words that I want to shove down their throats. It sounds so ungracious and I acknowledge that, but I only see the humanity in a few clear brows. You have to look straight in to see it. They don't all have it. They just don't. Like teaching, nurses should definitely go into their field with a mother's heart. If you don't have it, please don't enter the field. We will all fall vulnerable to the ravages of disease and you my friends are the face we search for the trace of our mothers heart. Make sure it is there. There is a bright spot, I think. I can't be sure because with each entrance into the next realm there is a list of "what this looks like". We are on a long term plan. There will be at least a year of "treatment", but that "treatment" looks like a lot of different scenarios all involving chemo. He has responded marvelously to the chemo and the ground is "scorched". We are very happy about this as we were thinking there would a shorter stay and follow ups. There will be a transplant and then more chemo. Everyone seems to be unsure of what the schedule will be and there are always tests we are waiting on. They don't have a clear path set and I am just needing a clear path. Why can't this have a clear path? It's a clear disease. I want to celebrate the win on the trail of many battles. I am inside, but there is this need to get a clearer picture. Maybe that won't happen or maybe it will. The murkiness is grating. In my mind, I am practicing envisioning what we will be doing in a year. We are on a mountain, the sun on our faces. He is smiling down at me as it was a difficult climb, but so wonderful to feel our muscles working the ground, drawing us closer to the top. Looking over the clear horizon, I see unending light. We are alive and we have conquered. The focus is becoming razor sharp and I know it will be. The focus is becoming razor sharp...