22 Jun When Cancer Comes Home to Stay: Jill’s First Few Weeks
Yesterday, a friend and I emptied Jill’s office. It had taken Jill and me six months to find, furnish, and establish the office for her private counseling practice. She was so excited about it and so proud to be working for herself. Now, in a single day, all of that is gone. As we shut things up, tie things down, box things away in preparation for the rough time to come, it feels like we’re getting ready for a hurricane.
Jill is frightened; she hasn’t been sleeping well; and yet she remains mostly positive. That is, she’s determined to make the best of the time she has remaining. So, even as we talk of final days and make our storm-days preparations, we talk also of what we can do together while Jill is still mobile. She’s having trouble walking and her oncologist says she shouldn’t be without a cane because she can’t afford an injury from a fall. I suggested to Jill that we start looking for a wheelchair–just as a back-up. Jill said, “No way. You might as well look for a coffin. Once I’m in a chair, I’m as good as done.” The oncologist is hoping for two “good” years and, presumably, one bad year. We’re not talking much about the latter.
Jill was supposed to start radiation last week but the oncologist found more deposits than expected and so ordered more scans to target them. This delays us by more than a week, which makes us nervous because, according to Jill’s last blood test, her markers for cancer are up 100 points. So this stuff is fast moving.
The delay has mostly to do with the insurance company, which demands a five-day approval period for new scans. In the short time we’ve been dealing with our crisis, we’ve learned this about the medical establishment in the U.S.:
1) Insurance companies call the shots, telling doctors what they can and can’t do, what insurance will and won’t pay for.
2) This is gate-keeping, intended to keep costs down.
3) The primary way to keep costs down is to stall treatment.
4) Stalling treatment means denying payment for decisive but expensive diagnostics like PET scans (ours cost $6,000).
5) Such stalling means that the insurance companies save money by letting patients die. Jill’s one-week stall might cost her a month or more of life.
In sum: the insurers have the data, which tells them that late detection of diseases like cancer leads to early deaths among patients. Much cheaper to go that way than to treat a condition for, say, twenty years.
Does that sound harsh? Bitter? It is the American way of medicine, sorry to say.
Last Sunday was like autumn, a high of 75, the sky as blue an alpine lake. Jill was having a good day, so we took a drive. A good day means she can sit with minimal pain (due to cancer in the bone). A bad day means she’s got so much pain she can’t do anything but lie flat on her back. Car travel can be problematic. But, as I said, it was a good day. We took Masie and Oliver, who are great travelers. Within minutes, they’re asleep on the back seats.
We bought Jill an antique chaise longue and set it up in our shady, beautiful side yard. She spends most afternoons there. Masie and Oliver keep her company, as does our alpha barn cat, Scrapper. “The Scrap,” as we call him, has started seeking out Jill and sitting in her lap. Though he’s our friendliest barn cat, he’s never been that friendly. Maybe he senses a change in Jill, who’s teasing me about how she’s replaced me as “the cat master.”
I’m about to sell a number of big items–a cargo trailer, my vintage 10-speed bike, a tractor attachment, and our camper van, which is now too uncomfortable for Jill. From those proceeds, we hope to buy a funky little travel trailer and get Jill on the road, if she’s able, before it’s too late. She’d like to travel a bit, if at all possible. That’s the kind of thing we fantasize about–it gives us a positive focus. Jill spends hours online looking for just the right trailer. It’s going to be a junker that I’ll have to fix up, but that’s the fun of it.
She talks casually of her end. Often she says, “I’m dying of cancer,” usually in terms of a joke. At an ice cream shop, she says, “If I announced I’m dying of cancer, could I get to the front of the line?” I know she’s testing it out, trying to get used to it. If I think too hard about how I might lose her next month or even next week, I feel weak with dread. The dread cascades through me like a gambler’s realization he’s got nothing left to pay the loan shark. And now he considers the beating, or worse, to come. Ruin–that’s what it feels like, the awful certainty of ruin.
I live in a twilight of disbelief. How can I sit with Jill, hold her small hand, listen to her joke, watch her eat, stroke her messy hair, smell the mild vinegar of her sweat, and then comprehend her absence? Her voice is the music of my every day. When that ceases, what might remain? I imagine a howling silence, a windless maelstrom
Most of the time, I hold it together, even as Jill plays out the possibilities:
If I live longer than two years . . .
If I’m still around then . . . .
If I’m not in too much pain by that time . . . .
Though she acknowledges it’s unfair, her having to die so soon, she voices no bitterness, no rage. Her grace and good will stun me.
I’m now sleeping in my office, to give Jill more space in the bed, where she’s often restless, reading her phone late into the night. If I don’t get enough rest myself, I won’t be able to do all that her condition demands. And, still, I wake at four or five every morning, my mind racing. The pressure mounts every day. I’ve got to stay healthy. I can’t falter. I’ve got to make it easy for Jill in every way, maximize the time we have left. When she talks eagerly of traveling, I think: The treatment may require us to stay put while we wait for better results. If those results don’t come, if the pain increases, there will be no travel again for you, my love.
I know she knows this.
The irony of our situation is that Jill’s 94-year-old father may outlive her. He has yet to accept this fact. Both Jill and her brother are trying fervently to make the situation real for him because they want to spare him the shock. He’s not senile; it’s just that, well, who wants to accept such news? This is one of the hard passages Jill and I are negotiating–letting people know and understanding how few really want to know. Some people will keep their distance and a few won’t even be able to acknowledge Jill’s demise. We Americans aren’t so good with death, not because we’re weenies; rather, over the past 150 years, we’ve expunged death from daily life. It used to be that a family would lay its deceased loved-one in their parlor for all to see and pay respects to. By the time I was born, children were pretty much forbidden from attending funerals.
That said, we’ve been touched to tears by the outpouring of support and love from friends, family, and acquaintances, even people we don’t know. Such comfort seems tribal, bringing to mind elephants closing ranks to hold up a failing member of their herd. At some point they–we–have to let go. A friend reminded me that each of us will be where Jill and I are now. But always we think, No, not now, later, much later, as if later will make it more do-able, if not more bearable.
Please send around Jill’s link to anybody who might take an interest: https://www.gofundme.com/f/d66qr-jill039s-care Within a single week, we’ve advanced one-third towards our goal. Thank you.