Colors forever changing

Life is changing quickly here at Denver Place. Every morning, we awake to a slightly different situation. His moans of pain are like a snooze alarm, reminding us that even as we sleep, Craig’s process continues. And with every new symptom, Craig grows more frantic. His body is betraying him, while his mind and spirit fight on. Naturally, the changes are distressing. We're all desperate to make his cancer stop, but none more so than Craig. Each day, he tells himself that if only he could get out of bed, he’d have more energy. Cerebrally, that makes sense: activity typically begets more activity. But for Craig, who’s as malnourished as he is “cancer weak,” activity just wipes out whatever reserves he has left. Though I support him completely, it's hard to see his attempts at keeping things "stable" knowing that, most likely, it makes little difference. The process has started, and there's not much we can do but keep him comfortable.

Though Craig is aware of his reality, accepting it is altogether different. He’s been pushing himself, as if by keeping busy, it keeps the entire process at bay. He’s had more energy by virtue of being off TPN. Perhaps the fluid is too much for his body to handle. Whatever the case, it seems the longer he’s off TPN, the more pep he has to his step. Craig’s been taking advantage of his new energy by taking trips outside, and getting close to nature, as he likes to say. For Craig, sitting idle is akin to waiting for his life to end. Doing something at least makes him feel alive. I don’t blame him. If I were in his situation, I’d want to take advantage of every moment left. After all, conserving energy doesn’t change the end game. Still, like everything, there’s a balance: just as it doesn’t make sense to pass away the energetic days staying indoors, it doesn’t make sense to burn all cylinders at once, just to be tired for the next few days.

Throwing caution to the wind, Craig’s been flirting with the “burning all cylinders” side to life, lately. There’s an earnestness to his eyes, a fear perhaps. And it’s different. It’s as though he has sensed a change in his body, and isn’t ready to accept it. He said as much yesterday afternoon, during yet another tough conversation where we discussed TPN, his energy, and the prospect of dying. After one week being off TPN, we restarted it Thursday morning, as agreed by Craig. For some reason, within a few hours of attaching it, Craig began feeling antsy, as though his heart was racing. We decided to disconnect the TPN half-way through due to his distress. I spoke with the nutritionist yesterday morning about our options with TPN. Unfortunately, we’ve reached a point where we have few available. Craig isn’t receiving nutrition orally; TPN is his only option for nutrition. Though his body may not be able to absorb the bulk of the TPN nutrition, he’s still receiving some. Whether it’s enough to be therapeutic is questionable; the TPN is offering mostly emotional support, with perhaps some caloric benefit.

The conundrum is the TPN may also be causing pain, discomfort, fatigue, and ultimately, psychological distress. By contributing to his sense of fatigue, the TPN, in turn, contributes to his anxiety about dying. However, being off TPN makes him feel he's wasting away. How to balance this with Craig’s concerns is the issue. Persuading a certain course always points toward actions not yet accomplished. It assumes possible futures, and contrives necessary fictions. With TPN, any decision is full of risk and uncertainty. All we know is how TPN makes Craig feel. Physically, it hurts; emotionally, it helps. Regardless of whether the TPN is beneficial or not, it is clear Craig wishes to continue having some nutrition; the prospect of “going it alone” is simply too distressing.

Dad, Erin, Diane and I talked his anxieties through with Craig earlier this morning, but it’s a delicate balance. We don’t want to say anything that may be upsetting, but we also want to speak frankly and answer his questions honestly, which he seems to appreciate. It’s emotionally taxing, because ultimately, we’re out of options. That’s the cruelty of it.Seeing him in so much pain is more than we can bear. We're doing our best to keep him comfortable and to qualm his concerns when he worries about losing his strength. Though he’s still desperate for solutions to stave off his weakness and eventual decline, in reality, he’ll continue to grow weak and there's little we can do. The watching and waiting is the hardest part. All we can do is help him with the little things (i.e. taking showers) while talking him through his anxieties about the dying process.

Thankfully, he wants to talk about it. Talking seems to help him understand and accept what’s going on. He’s so weak now that it’s hard for him to remember key details, so we often repeat our conversations. Talking is all we can do to keep him comfortable and at peace. Some days, he seems to understand where he is within his process. Other days, he’s anxious to go walking in order to build up strength. We embrace each day, and each disposition with open arms, and try to muster words of comfort to help him get through each day.

During yesterday’s conversation, Craig admitted that he’s having a hard time coming to terms with his illness and accepting that he’s dying. He added that he’s finding it difficult to imagine all this coming to head. We asked if he had any questions or concerns about the process. He said he wondered how it would all play out. Will he fall asleep? Will he be in pain? Will he know what’s happening, when it happens? We talked about his concerns about what happens “after”, and assured him that we will continue on with our lives, and as a family with Craig and Mom walking beside us. He said he wasn’t’ ready to stop trying to live and that he didn’t want to give up doing the things he loves. He added that the our family motto "fight fiercely" means a lot to him at this point. He's living by that motto, regardless of the likely outcome. We told him that we'll be by his side every step of the way, and that this is very much his process. If he has the energy to go on a walk, he should do so, by all means. We told him that we’ll support him if he wants to continue fighting, but that we’re also okay if he wants to let go. We said we didn’t want him to be holding on just for us. I asked if he had any last wishes for how he’d like to be remembered; he said he’d think about it.

We also talked about how we can help alleviate his anxieties by helping him with daily activities. At the suggestion that he have a CNA come to the apartment to help him bathe, he simply said, I don’t need one; I’d rather have my sisters help. It seems that though it’s hard for him to relinquish some of the most normal activities, like taking a shower and going to the bathroom, he’s okay relinquishing them to us. It’s hard to describe in words how I felt hearing him say he’d prefer to entrust us with his care. For so long, we’ve shared the most intimate of stories, and the most tragic and heartwarming accounts of both the important and the mundane, the tasteful and the tawdry. We’ve been each other’s most trusted confidante. That he’s entrusting us with his health and his peace of mind as his body slowly gives way to cancer is the greatest honor. There’s no place I’d rather be than here with Craig as he slowly lets go of his physical body, his independence, and all the other aspects – both big and small -- of being able bodied. And as the process continues, there will be no greater honor than to be with him as he finally says goodbye to the struggle.

With every day, we awake to a new situation. Our new reality challenges our emotions and defines us as a family. We don’t always have the right words, but we’re here together, nonetheless, supporting Craig and each other through an extremely difficult process. It will get harder, and someday, the crash will come. Until then, we’re taking one day at a time, and enjoying our moments together -- however they may change. -- J