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.
life and breath: outliving lung cancer 
surrounding you with love and dry wall….
I could use both…. 🙂
Linnea
Sending warm thoughts of clean air, good news and hope…
Thanks Amy!
Linnea
Hello Linnea, as I speak bad English, I am sending you this video as encouragement. http://m.koreus.com/video/chamois-avalanche.html
Best thoughts. Lou Til
The only comfort here is that you don’t have to mud and tape yourself! I hope you get your home back soon. There are few things more uncomfortable than not having a place to “be.”
I can certainly understand why you’re torn about Xalkori (crizotinib). But who knows… You could get a surprise year of stability from it, lol.
Enjoy your shiny new cabinets and dishwasher. 😉
Oh, and don’t think you can get away with being a lung cancer patient that’s “huffing and puffing” and blowing anything down! xo
Jessica, I know you get it. But yes, I hope to respond—better yet for a sustained period—and to get my lungs all shiny and clean as well.
Linnea
So unfair to have to leave your new place for a short remediation, but it’s better to have identified and fixed the problem. On the other subject, I sure do hope you can be made eligible again for you next good drug soon.
Best hopes,
Craig
Thanks Craig.
Linnea
From one leaky house to another I send loving thoughts — and prayers for a better spring! xxxxx
Liz, I’m certain I’m not the only one with a leak issue. To certain spring!
Linnea
Thank you for this. As a recently diagnosed stage IV lung cancer person who had to leave home and pets to move to Boston for treatment and who has a dire family problem to deal with here, I sometimes think that I should not have to contend with any extras, just with the cancer. Living with cancer.
thinking that I shouldn’t write out my thoughts as they are quite profane. .. I recall a quote that at times has been my mantra ‘What doesn’t kill me makes me stronger’ and you my dear friend are one of the strongest human beings in the Universe. And I would like to tell the Universe that you don’t need to be any stronger so it can just BACK OFF!
Amy, I appreciate you having a word with the universe on my behalf. This old girl’s getting some tired.
Linnea
It has been windy in NH lately! Hoping the strong gusts become gentle breezes for you soon. XOXO
Warm, gentle breezes 🙂
Linnea
Good times in SF coming soon! Can’t wait to see you.
Can’t wait either!
Linnea
That is a lot of stuff to process, event-wise. Chris got caught up in that trial eligibility catch-22, but his condition was so very precarious, cutting the time horizon sharply. You have been, and are doing, so well that I think you can only continue to do so. Good luck with the scan! And yes, I agree the Universe should back the %&#$ off. Maybe it is time to call in Joe Pesci to teach the Universe how to behave.
XOXO
Joan
Joan, still processing…. 🙂
xoLinnea
After reading what you have been going through, I feel overwhelmed but you seem to find the positive. You go girl!!
Kathleen, I am in fact overwhelmed. But also positive 🙂
Linnea
Oh my Linnea, it’s always something to challenge us, it seems. Bless your maintainance man, he is an angel. I hate the catch 22 of the trials, as much as I hate lung cancer in general. Stand Strong, Lady. Maybe someone will offer you a trip to warmer shores. Hedy
Hedy, I’m off to CA for a few days tomorrow—warmer shores!
Linnea
Thought of you often over the past year and always wished 3922 would be available for you. I need to tell you again; you are an inspiration to me and many others I have worked with.
Just sending you more lovelovelove and prayers. I had to stop reading about the trial studies as I am trying to find peace with my husband’s treatment in the trials and his recent passing. Truth is, I still have anger toward his treatment. I am taking all that anger and turning it into prayers for you…prayers for a good response, prayers for strength, prayers for whatever you need right now.
Great Love,
Deborah
Thanks Deborah—I know it’s hard. We are always on the edge of something better….and sometimes the timing is not in our favor. Let yourself feel angry if you need to, but know that your prayers and love mean the world to me.
Linnea
Hope you have the mold beaten into submission, and you’re snuggled back into your new place. We will go on. Hugs.
Will….go….on. Yes, we will ❤ Linnea
Hi Linnea, I’m going to be bossy here. I’ve spent Jan/Feb in the dumps, way down in a dark place. I looked around down here and saw I wasn’t alone, you were there, too. Lady, we cannot do this. We must stand up and climb out; raise our faces to the sky and keep moving, following that faint trace of light above.
Life is tough, for some of us, impossibly tough, we both know that. Our lives are worth the struggle, Linnea, however overwhelming it gets. My kids came for dinner last night, a tradition I’d broken soon after we lost Steve, one look at their faces told me I had been wrong to stop gathering on Sunday night. I’d shut out the very people who love me the most. I wanted to spare them from seeing my sadness, my grief for their dad, but I was wrong. They needed to share that and so did I. My oldest told me that not being here on Sunday nights was as if they had lost both of us.
Linnea, I pray you receive some positive reports and a new surge of energy soon, but in the meantime stay open to those who love you, who depend on you and who lift you up. That includes us, your groupies Dear Lady. We are here to support you. Hedy
Stopping by with prayers for you. I so want life to be easier for you.
Lovelovelove, Deborah