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| Remember the seven years of this? We got lucky, and very, very blessed. Another family's not so lucky this winter. We can change that. |
Wings and I know what it's like to be the next thing to homeless. We did it for seven long years. Seven winters in this climate, with a couple of years where the lows hit -40. That's actual temperature, not wind chill. And that was living in a ramshackle, uninsulated, toxic tin can of an RV.
It's one of the reasons, most likely, why I nearly died twice 15 months ago, and why I'm dealing with testing for what could turn out to be some very bad things now.
But during those seven years, we didn't have small children to care for. I wasn't battling cancer, dealing with a disease in Stage 4 in multiple areas of my body. I may know now what it means, on a very personal level, to have my breathing stop, to have my, as someone some of us know was forced to write about his wife, "lips turn blue." But I didn't have to deal with all of that without proper housing, and I have to tell you, that's likely why I'm still here today.
Some folks we know are dealing with precisely that situation, though — the worse version of it. Those of you who frequent, or even just read at, the Great Orange Satan know them as Freelance Escapologist, a/k/a Callum, and his wife Kim. And they are going through a special kind of hell that Wings and I know all too well.
First off, before we get into the specifics: In the immediate term, we have to get them housed, which means finishing their power and water and septic hookups off and getting their manufactured home hauled onto the land and set up. Just for the bare minimum, moving the home and finishing off the septic system and getting everything hooked up and functional, we need to raise $3,000, which should be eminently doable in short order. But it hasn't been. So now, while Wings and I are not in any position to offer a big standard match, what we're going to do is this: We're kicking this off by putting in $100. If 29 people match us dollar for dollar, this first stage is done. If 59 people give $50, it's done. If 119 people give $25, it's done. Here's the link (it's still at $2,500, but they've had medication and other expenses drain what's been raised, and they need a little breathing room for the incidentals that you can't predict but that always, always occur in a project of this magnitude).
Surely we can scrape together a hundred people who can part with $25, right? A week's worth of runs to Starbucks, which none of us should be patronizing anyway until their billionaire CEO does the right thing, gets off the Presidential stage, and quits endangering the country further. Right? What better repurposing of money the country's been throwing at a billionaire for mediocre coffee than to help a family, one most definitely not in the billionaire class, get and stay housed? Better yet, so Kim can heal in shelter and safety?
Now, there's a lot behind this story, so please keep reading. It's one part measure of the dominant culture's failure as a society, one part "there but for the grace of whatever goes literally anyone," one part very large trigger for my own fears and memories. I read the account of Kim's recent hospitalization with tears streaming down my face, because I know that fear. And it's frankly absurd that in a country as rich as this one, Kim and Callum and their kids should not already have their home set up on their land, hooked up to their utilities, and be able to focus on Kim's healing in safety and a relative sort of peace.
But you need to hear this in Callum's own words. First, from last November, when this effort first really got under way publicly:
Earlier this year, my wife and I secured land and a modular home that we would move into, to provide security for our children and a forever home for our son, who will almost certainly require 24/7 assistance for the rest of his life. It was a goal we had sought to attain for over a decade, and we were about to achieve it. Everything was going to change.
And then it did.
We suddenly found ourselves homeless for reasons too complex and rooted in familial issues to go into here, and we ended up living with my sister-in-law in her tiny, two-bedroom apartment. Undaunted, we redoubled our efforts - it would only be a few days, a few weeks at most; nothing too bad, right?
On June 20th, my wife was diagnosed with Stage IV synovial sarcoma. Her median survival time with treatment is projected as 10-48 months, but new therapies are coming on-stream all the time, and she is due to start a clinical trial for a new immunotherapy in January. However, even if successfully treated, she will require a radical hysterectomy and possibly a leg amputation, given the current spread of the disease.
She has health insurance, but like millions of others, her copays are crippling us. Her doctors have decided that they have to get very aggressive from the outset, which means many expensive, exhausting chemo sessions.
Treatments currently run to almost $1000 a month. Earlier this month, she had to go on medical leave from her job, and has applied for temporary disability and Medicaid. Unfortunately, neither of these benefits will start until after the New Year. We will make it, I know, even with these reduced means, but the immediate future will be very tough.
Cancer treatments and finishing work on the property have destroyed what few savings we had, and now we are living hand-to-mouth.We cannot finish our home. We still live on my sister-in-law's floor, and progress on finishing the house has ground to a halt.
We didn't have a lot, but we sent a small amount, because we know. And we crossed our fingers and we prayed for them to have some food fortune.
Unfortunately, it's not that when it rains, it pours; it's that when you're financially poor, every obstacle turns into a tidal wave. And the trickster-ish nature of fortune being what it is, even good news has to be side-eyed, because you can never be sure. From January 20th, which appeared to include some happy developments:
The Bad
Soooo... yeah... Kim has metastases in her kidney, heart and brain. This isn't good, obviously. She also has a brain bleed, which we are assured is very minor and will almost certainly stop on it's own. It's almost nothing (we are told) more of a slow seep than anything. Blood coming out of your brain is ok... when it's at an 'acceptable' level... ummm... ok...
Oh, and a chest infection and some mutant form of strep throat that is causing blisters to form. So no biggie, (we are informed) just bedrest and relaxation.
Try not to stress.
Ah. Ok then.
The Good
As I mentioned in my last diary, Kim is responding incredibly well to the immunotherapy. After shooting up by a factor of four during the immune-system-boosting-phase, her markers declined by 1.5 points in a week, which (we are told) is amazing, unprecedented, and better than anyone they've seen so far. Kim is extremely competitive, so winning is good.
The metastases appear to be responding to the immunotherapy, and the swelling in her brain has gone down to a manageable level (wait, what swelling? Oh, the swelling that wasn't mentioned because it wasn't quite serious enough for them to light their hair on fire over...)
. . .
Progress on the house is at a standstill right now; the weather has beaten us, but so, too, have the escalating medical costs. We're very close, but meds are still kicking our asses, and I only learned to juggle three bean bags... work is almost impossible to find in rural Missouri this time of year, and Kim's disability claim was denied meaning no income for some time. Fortunately, it's possible that taxes will tide us over until the appeal (assuming a lot of belt-tightening) so we're keeping our fingers crossed on that one, at least until people emerge from hibernation to require someone who can work on roofs and so forth.
It lasted two days. On January 23rd, Callum posted this, and I sat there weeping — yes, in part because it threw me back to my own near-death experiences not yet far enough removed in memory, but also because, dammit, no one should have to deal with all of this and that particular brand of terror, too:
Soooo... yeah. That happened. Kim went into v-fib at 10:30 last night... cue sirens and fear and confusion, and me seeing my wife's lips turn blue and her eyes grow wide as she understood exactly what was happening to her and then off to the local ER, and then transferred up to Siteman for monitoring because apparently heart trouble associated with metastatic sarcoma is a little bit above their pay-grade, and then beta-blockers and valium and... yeah. What, me, panic? Naaah...
The rundown is actually surprisingly simple: Kim has (as I mentioned in the previous diary) metastases in her brain, heart and kidney (well, more than that, but those are the most critical ones). They're not huge (the largest is <7mm a="" almost="" and="" are="" as="" bad="" be="" by="" could="" deeply="" don="" font="" have="" her="" in="" invaded="" is="" it="" literally="" long="" not="" on="" organs="" rather="" seem="" shot.="" so="" t="" than="" the="" they="" tissue="" to="" which="">
So now we have an interesting situation; the immunotherapy is working; even now, after just three weeks, her markers are declining and there are clear signs of an amplified immune response to the sarcoma. Her little white blood cells are kicking the ever-living snot out of her tumors. The problem is that those tumors are awake, and they are pissed.
The other factor is her own immune response; part of it is inflammation. It's why you get a little lump around a cut, and why your chest hurts when you get an infection. In Kim's case, it's her heart, kidney and brain that is swelling. This is definitely not good.
The swelling in her brain leads to what she calls "oopsies". She forgets people's names; she has mini-fugues; her fight-or-flight instinct is in overdrive most of the time. Not really a fun time.
Her kidney is currently operating at about 10% capacity, which is worrisome. The advice is "use it or lose it", so her oncologist (Dr. Andre, or "Dr. Dre" to his patients!) told her to pee like the wind!! It's being monitored now, and unless it packs up completely, they'll leave it for later.
Inspiring stuff, eh?
So... the ventricular fibrillation episode... yeah, that's a function of swelling in the myocardium and blood pressure. So, cue some new pills.
As of last night, Kim's epic medicine cabinet swelled to the tune of a medication for her kidneys, a beta-blocker blocker for her heart and valium for stress to alleviate the heart and brain symptoms.
So now it comes to the punch. As I mentioned before, copays and weather and scans have kicked our arses. We feel like we're back at square one again, but the reality is that we have made progress. Kim is getting treatment. It is working. She has a better handle on her disease, and we both have a better handle on how we can deal with it.
Let me tell you, an experience like that? It turns your world upside-down. And yes, while there is a great deal of truth to how grateful it makes you for the littlest aspects of existence? That sense of wonder gets buried under the sheer avalanche of fatigue and stress and pain and more fear when you're literally just fighting to stay alive. You don't have time to ponder more esoteric existential questions; you're too busy trying to answer the very basic down and dirty existential crisis of being able to stay conscious and draw another breath. I can only imagine the fear Callum must live with every moment, too. I suspect that Wings has a pretty good grasp of it, though.
For the moment, they're staying with Kim's sister in her 2-bedroom apartment: Kim, Callum, kids. Her sister's been wonderful, but it's untenable all the way around. Kim has to have the one spare bed, which means Callum and the kids have the couch and the floor. Their middle son has autism, which presents additional challenges for them to navigate in the middle of all this upheaval. And so much would be solved if they could just get their home set up and get moved into it. The doctors are telling Kim that's what needs to happen, for her own health and safety. For survival.
We can make it happen.
So again: Can you match our $100? If not, can you match a portion of it, and rope someone else in with you to kick in a little, too? Here's that GoFundMe link (and as I said above, it's still at $2,500, but they've had medication and other expenses drain what's been raised, and they need a little breathing room for the incidentals that you can't predict but that always, always occur in a project of this magnitude).
Most of us are ordinary folks; we don't get to be heroes, except to those who love us. It's not often we get the opportunity to do something that could, in fact, save a life. This could be one of those rare times, and we need to take advantage of it. There but for the grace, after all.
And even if you don't know who Kim and Callum are? You know us. And we would consider it very much a personal favor if you could help a bunch of us help them get this accomplished.
Thanks, everybody.
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