Wow, you look really good!
People (well-meaning to be sure!) say this to my dad all the time. Later, we discuss this: What does it mean, exactly? What should a stage IV cancer patient look like? Should he be more bald? Even more thin, weak? Less dressed? Less up-right?
I'm frustrated & I'm here to rock the idea that what we look like on the outside says very much at all about what is going on on the inside. Especially when it comes to the sometimes long process of dying.
Twelve days ago, a nurse sat in my dad's living room. She was there because I'd called her.
A couple days earlier, when we went in for Round 9 of the chemo, the oncologist had said that George should take a break: he was weak, had lost a significant amount of weight, and was needing to lie down most of the day due to the pain in his abdomen -- all this was discussed while the patient perched on the edge of the exam table looking, for all intents and purposes, very much like he's always looked: tan, fit, a twinkle in eye. Sure, perhaps his eyes were a little more recessed, maybe his shoulders a little sharper under his t-shirt, but that same salt-and-pepper-ed, handsome guy with a quick smile. Is this what it looks like when the doctor says, Go home and rest. I have nothing for you right now. We'll talk in a couple weeks..?
We went home with mixed emotions. One the one hand, I was relieved for the break in chemo. It is hard to drive someone who is feeling horrible to a place that will fill his body with poison, knowing that even if it is affecting the cancer, it is also going to leave him weaker and sicker. What's the return on investment? On the drive down the hill, we might chat and laugh. Maybe a little more of that at the beginning of the infusions as we settle in, but by the end, he'd be laid back with his eyes closed. "Afraid to move," he'd say. I'd then drive him home silently, avoiding any potholes, trying to get up Black Road both as quickly as possible, and with as little carsickness as possible on the hairpin turns.
But -- did this mean our options for treatment were dwindling? If so, how did we feel about that?
When I brought up the notion of Hospice care I may as well have shouted a four letter word. He was stunned. He resisted. "I'm not there yet," he said. I pushed, as gently but as persistently as I could. I wanted support, information. I needed something more than I'd received from the oncologist, or the once-a-month support groups at Stanford Hospital. I needed to know where on the map of stage IV cancer we are. I needed to know that when I told someone he was in pain, that they would listen. And when I said, "He's not eating!" someone would be there to say gently, "I hear you. I know. It sucks, but this is part of the process."
I found that with Hospice. I know it was scary for my dad the day the nurse sat in the living room that first time. We talked about death and dying. We talked about treatment options possibly dwindling. We talked about how hard this is on us, the survivors. We talked about final wishes.
It was hard, but it was also a lifeline. Finally we were discussing what was happening right in front of us!
And that very night, a pharmacy delivery driver showed up in the driveway at 8pm with a bag of medicines. A "comfort kit," they called it. Some medicines we just store for down the road, but others were to be taken right away: something for pain, something for appetite stimulation, something for constipation. All these things I'd been anguishing over and trying to get help from the oncologist, and finally someone had not only heard our concerns, but had responded that very day!
So, we are now in the Hospice chapter of this journey. It may be temporary (we'll evaluate treatment options again next week), or it may be permanent. I don't think my dad is dying this week or next. But I know that as long as he is on Hospice, we'll have compassionate care along the way, no matter how short or long the road is. I'm glad we didn't wait till his final days to get this kind of support, for him or for my brothers and me.
...
I've thought a lot lately about how similar dying and childbirth are. It fits, right? That entering and exiting this place might be symbiotic? In so many ways I feel like I'm serving as my dad's doula: I'm here to hold space, provide comfort and information, to do light housekeeping and cooking, to make sure the dog is cared for, and that the family knows what's going on. I can't take away the pain, but I can hold his hand -- or simply be in the house, bearing witness. I can hopefully be the difference between pain and suffering...
And all of this is building toward a day when the pain is no more.
Is this what a Hospice patient looks like?? Taken 8/19/14
