Trudging through Molasses

I’m sitting in Craig’s room as Erin and Diane prepare dinner. As I sit quietly by his side, a single tear streams down his face, leaving a thin wet mark behind. It’s hard to know the origins of that tear. Is he dreaming? In pain? Are his eyes dry? Maybe it’s not for me to know. As I rest my hand on his leg, his eyes flutter open and then close. He’s resting more soundly now. Since increasing his morphine by 30%, it’s harder to wake him from his sleep. And I don’t feel we should: if his dreams are taking him to a better place -- as much as I’d want him with us -- I’d just as soon let him be.

As he sleeps, his head rests near his left shoulder, his body rises with each forceful breath. His breathing takes me back to mom’s hospital room. Her head would slouch to the right and would elevate with each breath, making breathing a full body experience. Over time, the rhythm became more sporadic and shallow, indicating organ failure and the beginning of the dying process. Though Craig’s breathing has also become sporadic, it's not at the same level. Interestingly, there's a certain rhythm to his patchy breathing. He usually takes a couple deep breaths before exhaling for a few long counts; the time between breaths can span ten seconds, sometimes more. I've tried to mimic his breathing but find myself gasping for air. Craig's now on six liters of oxygen, so perhaps that's assisting his breath. Whatever the case, he seems to be managing. Still, we've fallen in the habit of peering at his chest during the night, just to make sure he’s breathing. When his respirations fall below six and the time between breaths increases, we’ll start thinking about an imminent transition. That time isn't now.

Craig seems less agitated since the weekend, but is still having trouble sleeping through the night. He calls for us at least three times each evening. Diane usually takes the first shift (around 2AM) with Erin as backup, while Erin and I take the late morning (usually 4:30ish and 6AM). We’re fighting to stay awake during the day, but wouldn’t change a thing; fatigue is the least of our worries. After all, we’ll have plenty of opportunities for sleep in the future. Craig’s nights, however, are limited. We’ve been going for the past twelve months, by now, we know how to keep the engines from burning.

Thankfully, we now have help in the form of hospice. The hospice nurse visited again yesterday, along with Cydney, the dietitian. The purpose of the visit was to look over Craig’s new morphine schedule, and assess his condition since increasing the dose. They also (re)discussed TPN, and the various pros and cons. The nurse mentioned to C that, with his heart rate hovering around 140, there’s a risk that TPN could actually hasten his death, as the heart would have to pump faster in order to rid the body of excess fluid. Knowing the risks, C decided to try TPN last night, with the idea that we’d closely monitor his heart rate and vital signs. We also ordered fruit drinks infused with whey protein and vitamins to supplement his TPN. Taking in fluids naturally won't put as much strain on his heart as artificial TPN. The catch is Craig typically vomits after ingesting anything short of water. Still, it was worth a shot.

After a somewhat restless night (the guy had to go to the bathroom every other hour), we awoke to an irritated, yet semi-alert, Craig. He lasted the night with TPN sans incident. (He even tried a fruit drink and was able to keep it down eight hours before vomiting about a half hour ago. We’ll take it. I feel he drank too much; if he were to reduce the volume, the fruit drinks may be a viable alternative to TPN. If we could wean him off TPN, we could eliminate the associated risks. If …) We met with the social worker, Desiree, earlier in the afternoon. She visits Craig (and us) once a week to discuss his concerns and help him work through his process. She typically meets with C first, and then we join for a family meeting. This allows Craig to voice his concerns privately, as well as with us.

During our discussion, he mentioned how much it saddened him to be missing out on the DNC. He said he hears us talking about it, and feels that, if he were stronger, he’d be at the Convention Center, in the mix of it. And Craig’s right. He was actively involved in the Denver caucuses, given the chance, he’d happily serve as a delegate. Hearing his concerns, we suggested that we take a field trip in the car to show him the zoo that has become the DNC. (The merchandising and pimping of politics is a tad ridiculous, in my opinion, and a little off message.) We also suggested that we film bits and pieces with our personal commentary, and in a way, bring the convention to him. (He preferred the latter, so Erin and I will take on our citizen filming tomorrow en route to do Sammie’s meds.)

Craig also mentioned that he feels less mentally ‘bright’ than before, that it’s harder for him to express himself through words. I told him that he’s still very much Craig, and that the knowledge and wit is still there. The cancer and drugs are weighing him down so that it feels like he's trudging through molasses. He agreed, and said "it feels exactly like my brain is trudging through molasses." Given all that he’s had to endure, I’m impressed that he can still muster the energy to explain to us, in very clear terms, that he’s having a difficult time expressing himself. Sure, it takes him a little longer, and he often falls asleep in the process, but his thoughts are there – he’s still Craig.

After our conversation, he stated that a goal of his was to venture out of his room. And so he did. Like hailing a taxi for curbside pick-up, I brought the wheelchair to his bedside, picked Craigy and his three wheezy bags up, and, along with Diane’s assistance, drove him the ten feet to his living room, where we watched Seinfeld together. That he was able to get into the wheelchair and spend some moments in the living room with us was a huge step. Craig’s been confined to his room for the past several days. Though feeling tired and not his best, Craig met his goal. He even had enough energy to watch the nice, chirpy family film 300 a few hours later. I’ll never forget his comment after queeny gets bullied into sleeping with big teeth (the politician). Craig said “No, don’t, you stupid idiot.” I was surprised he was still awake let alone TV talking.

He keeps surprising us with his energy, and even though it may feel like his brain is trudging through molasses, he’s still there. His words are being buried by cancer and drugs, but he’s there. He’s setting goals, keeping up with our crazy politics, and even TV talking, when he feels like it. He’s doing it his way, TPN included. We’re there as Craig’s bench warmers, the folks on the side just waiting for the chance to help out with a water bottle, a towel, or a comforting hand. -- J