Upendings and Updates

It’s been a few months since I’ve written a post. I should instead say that it’s been a few months since I’ve published a post. I’ve written several of them, but when it came time to publish them to our webpage, I hesitated and stalled.

This, then, is going to be long, for there are stories in need of telling.

When last I updated, David had received his PEG tube. Up until only a couple of weeks ago, he used this for hydration alone. Now, it’s doing what it has always been meant to do: Pegi feeds him. Over the months, David gradually lost some weight — weight that he needs, weight that is crucial. This was due to the disease itself, but also because he’s lost a great deal of functionality in terms of chewing and swallowing. To assuage that difficulty, he gets supplements and we’re hoping this will allow him to gain back much of what he lost. Pegi the PEG tube fulfilling her purpose is a good thing, and I’m immensely grateful that David chose to get her installed so by the time he needed her, she knew the lay of the land. (It helps to animate these little helpers – helps to keep things in the perspective of life and vitality even if it seems strange to some ears.)

September and early October were exciting weeks. David was measured for and got to choose the model of his power chair. Here he is, testing out the model he chose, whom we now call Purple Haze, named by Sam, his Occupational Therapist. You’ll see why. While the Haze wouldn’t arrive until November, it was well worth the wait.

Early October also saw us enjoying a visit from David’s sister, Valerie, her wife, Lola, their Aunt Beth and Grandma, Eldora. The fam was ensconced in a most cool cabin on the water up in Kingston, so we were able to really enjoy them in a beautiful setting. Here’s D and his Gramma. I remain uncertain why his belly is out other than he must have been showing off Pegi. 🙂

Remember back in late Spring when I told you about the trials David qualified for? Well, they never panned out. The most promising one was delayed and delayed until we were faced with the unenviable task of choosing to go with another format that while would start him on the medicine, would preclude him from taking the oral version which would have been fas less intense. Let me tell you a little but about this, as it’s been trippy to say the least.

On October 18, David and I drove into Seattle in the early AM for the first cycle of the infusion known as Radacava, or Edaravone. We’ve had to hear it 1,000 times, so I’ll repeat it for you. It’s not a cure. It won’t put him into remission, it’s not chemotherapy. What it can do (not will do, for there are no certainties) is slow the progression. The trial was for this same drug, yet for the oral (capsule) version, while this platform is given intravenously. The first day, the IV nurse, Amy (I love her!) administered the drug but told me in no uncertain terms that my training would begin the following day. Yes, I would be administering David’s infusions from here on out. Two bags, given consecutively, along with saline flushes, while keeping everything impeccably sterile. Peace of cake. Right. (You can see his mid-line here).

I chose to approach it reverently, intimately, like a ritual. There is order, a kind of language to follow, ensuring David’s safety. I was nervous the first few times, and I turned to the handout more than I needed – just to be certain – but now, as I write this, he’s in the midst of his third cycle and it’s become one more way to slow the progression. This at least is pro-active. Everything else feels merely responsive and that can get really deflating fast. Each infusion cycle lasts 10 days except for this first one. By day 6, we were doing them at home. You can see the benefit: someone gets to relax in his own chair, in his own house, eating his own McDonald’s cheeseburger while the Ratties dance in the window. Because who doesn’t need to be near dancing ratties?!

Of course, it doesn’t always go like clockwork, and I’ve had to call Amy a couple of times. But her training was fantastically designed for a person who never had even the slightest desire to be a nurse. Frankly, the harder part was keeping it dry while showering him, but each empty bag (20 per cycle) has meant the extension of time.

Early November saw us thinking about the holidays, but also David’s birthday and the placement of a port. That requires a story-telling session that I hope will be a PSA for advocating as strongly as possible for the best care possible.

Once again, there we were at the VA hospital in Seattle, this time to have a port place to make the infusions a bit easier. In other words, we wouldn’t have to travel days on end, and they could just have me do all the dirty work. 😉 This time, however, our encounter was less than pleasant. Quick rundown: When we arrived, it became immediately clear that the nursing staff hadn’t looked at his chart, and therefore didn’t know he was an ALS patient. In fact, one of them turned to me, asking, “What does he have?” Huh? My confidence wasn’t high. Then it was the ubiquitous, kick the wife out of the room, even though she’s the only one who can understand him. This is when I donned my bitchy voice: “That’s fine, but how are you going to make sure you understand him? Because you have to stop what your doing [stop the frenzy], pay attention, and give him as much time to express what he needs.” Do they know about aspiration? Do they know he’ll need to pee, or that he needs to eat to take his regular meds? They looked at me, nodding their heads while placating me. I stepped from the room with a heavy stone in my stomach and then tears in my eyes.

The procedure, we were told, takes on average 20 minute. We arrived at 10:30 AM, and we left at 9:00 PM. It was only on the way home that David told me this: He was flat on his back on the table (you do NOT recline an ALS patient on their back!), with a curtain in front of him and a veil over his face. WT actual F?! ALS produces more saliva and mucus than you can imagine, and while supine, it tends to pool at the back of the throat. I don’t have to go into detail for you to guess the danger that that poses. The gravity of this came through loud and clear when we complained about this fiasco to his ALS team, and they tellingly called it a “near miss.” A. Near. Miss. Consider that for a moment. A near miss.

That said, David, ever the optimist, made it through. At the end of the day it was me who was a mess of ugly crying face, but we don’t need to see a picture of that! Here’s a better one of David being his weird self!

It’s now mid-December. David is in his third cycle of the Radacava and here is a hard truth. There’s been decline. David no longer feeds himself, and his ADLs are under my care. Voice is all but gone, and walking and use of hands are no longer options. After an exhausting process, the VA finally approved the remodel of our house, and so as I write, we’re ensconced in a hotel until the 23rd. It’s been . . . interesting: moving furniture out, going back to the house to retrieve his comfy lift chair, carting in all manner of medical equipment, living with a dog and two cats, etc. But in another way, it’s given us a respite. It’s what’s allowing me to write now. It’s allowed us to have some important and deeply meaningful conversations and it’s allowed us to grieve what is being lost over and over again. The cliche of not knowing how much time any of us has can be trite, or it can be an elegant truth. We don’t know.

My wish is not to upset anyone, but to only give you an accurate rendering of how he’s doing. If, for some reason, you’ve not had the chance to reach out to David, thinking you’d find time later on, later on is now. Do it now. He’d love to hear from you. He’d love to hear what you have to say. Through Tobii he can write back to you though it takes time. He’s still managed to retain his acerbic wit, so he’s still the person you know and love. He’s still the most generous and loving man I’ve ever met. Let me repeat: he’s still the man you know. If you don’t know how to reach him, let me know and I’ll put you in touch. Just respond here – it’s that easy. If that sounds like a plea, it is.

Finally, a couple of people have asked how I’m doing. Here’s how I respond: Sometimes I’m OK. Sometimes I’m exhausted. Other times I am in despair over losing the way in which I’ve come to know and love David, so incrementally. I don’t know if it’s easier to lose someone suddenly, or to watch them walk a hell’s path of trial. Both are equally affronts to the soul, and there are times I don’t know how I will survive this. I’ve had some folks lash out at me for reasons I cannot fathom right now and I’ve had some folks extend so much love and support to both of us that I cannot believe how blessed we are to have them care for David and I so deeply. David continues to teach me things I thought were out of reach, and he maintains his capacity for love, tolerance, patience, insight, optimism and stoicism to the Nth degree.

This has been, and continues to be, the challenge of our lives. I know you all care for and love him as much as I, and I want to say thank you for engaging with him, keeping in touch, asking questions, checking in and just being there. We could not be more grateful. All our love, David and Gabrielle