I’m in a funk. The kind of piss poor and discouraged frame of mind that has left me wondering just how much more I can handle.
Of course, I know exactly how much—whatever life throws at me. In fact, I’ll borrow a quote from an article in yesterday’s NY Times (and originally quoted from Samuel Beckett): ‘I can’t go on. I’ll go on.’ The beautifully written opinion piece from which I snagged the Beckett quote was composed by Dr. Paul Kalanithi, chief resident in neurological surgery at Stanford University. Diagnosed with advanced lung cancer at the age of thirty six, Dr. Kalanithi has been learning how to navigate the tangible (statistics) versus the intangible; hope. You can read his thoughtful and moving commentary at this link: How Long Have I Got Left?
It’s cold, windy and dreary outside. At times like this it is my habit to note how happy I am to have a home. Only, right now I kind of don’t. Which is not to say I’m homeless. I’ve been temporarily evicted–make that evacuated–from my own apartment. A week ago I traced an unsettling dirty foot smell to the utility closet. There was standing water on the floor all around the hot water tank. I sent an email to Mark, the wonderful maintenance man by day/sometime drag queen by night. He called me within an hour (leaks are the chest pains of the world when it comes to apartment triage). His thinking was that it might be a loose gasket in the garbage disposal, as the sink was directly adjacent to the utility closet. He said he’d come by in the morning.
The next day the floor of the closet was dry. I ran the disposal, but no water appeared. I took a shower–to test the water heater. Again, no dampness. And then, just to be thorough, I started the dishwasher. Bingo!
Long story short, the dishwasher had a cracked drum which had obviously happened prior to or during installation. What may have started as a slow leak (clearly unnoticed by prior tenants) was now a gush. And bleeding up the drywall behind the dishwasher was mold—the black, nasty kind.
I was calm at first. Took myself to Five Guys and had a burger and a think. I followed that up with some internet research on black mold; some of it quite alarmist. The most reasonable source of information was from the EPA and CDC. I have a known allergy to mold and after a bit of reading I concluded that I was showing signs of acute exposure, as my eyes had been red and irritated for weeks and there was a rash on my wrists as well. And, of course, I’d been coughing. Clearly my lungs were at risk. Everyone involved quickly came to the same conclusion–I’d need to vacate my unit while the mold was remediated.
Fortunately there is an empty apartment in the lofts; a showroom of sorts and it is equipped with an airbed. I went back to my place and grabbed some clothes, sheets, a towel, a plate, a cup, glass, fork, knife and spoon. My teakettle and my laptop. Medication. I turned the forced air heat off and Mark and I plugged in some electric heaters. Jim from Servpro came by. He assessed the situation making use of a cool little device that picks up the temperature differences in moisture, and then he made his recommendations. The area around the mold would have to be contained within a ‘tent’ constructed from strapping and plastic sheeting. Servpro employees would then suit up before removing the kitchen cabinets and replacing two sections of drywall. Two big air scrubbers were plugged in and I said goodbye to my stuff and decamped down the hall.
That was a week ago. The air intake for the furnace is located just behind the moldy wall and as indicated by air quality testing, the heating vents were pressure cleaned. A natural product made from botanicals (Benefect) was fogged throughout the unit. Today, the drywall was replaced and the wall repainted. New cupboards and a dishwasher have been order and will be installed as soon as they arrive. I hope to be back home within a couple of days.
Of course, I’ve got more on my plate/mind than housing. Tomorrow I have a chest CT scan as a follow-up to an appointment with Dr. Shaw two weeks ago. At that time I learned that I do not qualify for the trial of the new ALK inhibitor, PF-06463922. There is a requirement that your last treatment was an ALK inhibitor and you showed measurable progression while on it. The fact that I had chemotherapy after coming off of LDK378 means that I am ineligible.
As a patient, I struggle sometimes with the rigor that is part of a clinical trial. The need for clean data (intrinsically related to FDA regulations) mandates a strict protocol for drug trials. That doesn’t always leave a lot of wiggle room for what might seem like compassionate and humane clinical decisions.
I have a friend who is also unable to qualify for the PF-06463922 trial because the tumors in her lungs have responded so well to treatment. However, she has numerous brain metastases and PF-06463922 is rumored to be effective at treating brain mets. In the strangest of catch-22’s—the current lack of cancer in her lungs means that there is no way to measure the effectiveness of the trial drug on thoracic neoplasms and therefore she is not a suitable subject.
There is a required two week washout period (again in the interest of clean data). This is tough, as many if not most patients with ALK mutations experience a flare of disease when coming off of ALK inhibitors. Again, I feel torn between the future (FDA approval) and the present, the urgent need of patients with ALK (and ROS-1) mutations for effective inhibitors.
In my case I will likely go back on Crizotinib, now marketed as Xalkori and available by prescription (so this time I, or my insurance, will have to pay for it!). Once I’ve shown progression, than I can get back in line for PF-06463922. So, it’s a toss-up. I hope the Xalkori is again effective for a sustained period of time, but I also don’t want to lose a chance to get on trial.
I’m feeling frustrated, for certain. On so many levels. I have been living an unsettled life for some time now. But, I continue to have much to be grateful for. A caring and responsive landlord. My amazing oncologist. And my innate tendency to persevere.
Blow my house down.