Hospice, Hospice, Go, Go, Go

Mom’s snoring again. Her breathing has been somewhat erratic since arriving in the hospital, but the doctor’s don’t seem too concerned, which is a good sign (I hope). Mom’s going on day three of absolutely no nutrition sans a bit of liquid (which they’re now tapering). Since she’s having difficulty with swallowing, the doctors have nixed all things food – including liquid Boosts – until the folks down at speech therapy can evaluate her. They were to stop by yesterday, but, we’re still waiting. Though it’s true people can go days without food, it seems to me that, in order to get an accurate neurologic assessment, energy might be helpful. How the heck is she supposed to follow someone’s finger if she’s too weak from being malnourished? They’re worried that her edema – her arms and legs look like the Stay Puffed Marshmallow Man -- may indicate that her body is not adequately absorbing water. Any additional fluids via sucrose bag, etc. would only add to that. Her electrolytes are off as well, so they’re going to taper her off liquids until her blood work stabilizes.

Yesterday was pretty tough as tough days go. Her day started with a back-to-back neurologic assessment from two members of the neurologic team. Thankfully, they left after a grueling half hour of “follow my fingers.” About a half hour later, a member of the hematology-oncology team arrived to run through some of the same questions. Then, about a half hour after that, the entire hemo-onc team arrived, including the attending (head doctor). Within a few minutes, the doctor launched in on how the MRI shows tumor progression; the treatment doesn’t seem to be working; and we need to consider hospice, which they can help us find in Denver. Immediately, D and I sprung from the couch and walked over towards mom, who, by then, was crying. I asked if he had compared the MRI to her past MRI and he said “no.” We then noted that the report indicated minimal progression, and asked that he compare the two before drawing conclusions. I mentioned that she had been off chemo for over a month, and had only started Tarceva a few weeks ago, so tumor progression was to be expected.

They had a few more questions for us, which, from their tone, seemed to imply that we were the crazy family that hadn’t yet grasped mom’s “serious” condition and were making her continue with life for our benefit. They hadn’t asked us about her story; they hadn’t asked about how we got to this point; they hadn’t asked about her wishes. They simply jumped to conclusions from seeing mom – who, yes, from appearances looks quite ill – without giving her the chance to express her wishes. We had to explain that it’s her wish to continue with Tarceva. When someone said the family wants to get her back to Stillwater, I piped in again and said, no, we’re indifferent, but mom had expressed her wish to go home, so we were looking into how we could make that happen for her (but only if she's stable...we'll do what’s best for mom in terms of her medical care).

Just as an aside, our experience with mom's doctor (not her normal neuro-oncologist) reminds me so much of Craig’s experience. Some people (not all) were ready to throw in the towel back when it appeared Torisel (and then Sorafenib) wasn't working. Rather than give Sorafenib a chance, their recommendations were to send Craig to hospice. We had to fight for alternatives; we had to fight for hope, and weather the sideways glances and “are you sure” looks along the way. To do this again with mom is exhausting, and it seems worse for her. Yes, she’s older and her process is at a different stage, but that doesn’t mean she has no less of a right to express her wishes and have people fight for them simply because she has brain cancer. We, again, have to yank people around to our side of thinking. We’re not naïve; we’re not trying to preserve mom as she is simply because we’re uncomfortable with the notion of her dying. She’s told us that she wants to live with cancer as long as it’s reasonable, and we’re going to support her wish.

Her current state reminds me of August. She has that similar vacant glare, similar problems with electrolytes, etc. (hence the tapering of her liquids), and similar unresponsiveness. How we got here is still puzzling. She has a UTI, that we know, but how this has impacted her brain is still a mystery. Her latest MRI shows only minimal progression of her tumor, which is fantastic, considering she’s only been on Tarceva for two weeks, and prior to that, had experienced record tumor progression. Had Mr. hospice, hospice, now, now, now bothered to compare the MRI, he’d have a better opening line -- the fact that it’s slowed is evidence that Tarceva may be working. Unfortunately, she’s now unable to swallow her chemo. We’ve consulted with the pharmacist, the folks at Duke, and the oncology team here for solutions, but it seems the people in the pill-making world have yet to identify alternatives for folks with swallowing difficulties. Perhaps, mom’s the first of her kind -- that’s the only conclusion we can draw for why there are so few alternatives. We can’t crush Tarceva so there goes the possibility of mixing it in a suspended liquid; nor can we give it in a liquid form. We may have to switch horses to another form of growth inhibitor.

But first, we have to figure out mom’s nutrition, and specifically, how she will eat. It looks as though she may be on the road to getting a peg tube inserted into her stomach. This will be a safer alternative to TPN, which carries the of a risk of fungal infection. Craig didn’t want a tube sticking out of his belly; hence, the TPN. I think mom is more amenable to a peg tube, but just the thought of her going home with one is incredible. D and I were teasing her yesterday about it being a reverse Pez dispenser. We’ll pop her pills in like before, with a fork and a quick wrist movement to flick the sucker in. “Fire in the hole...” I kid. It’s like the movie Being John Malkovich… maybe we’ll find a portal to some faraway place and time. Perhaps, then, we could find out who really shot Kennedy.

Until then, we wait ... -- J