I'm typing as Craig wills himself to sleep on his bed just a few feet over. He hasn't slept since yesterday evening. As he lays there wide-eyed and in pain, it's clear he's still unable to sleep, despite giving him a dose of the anti-anxiety drug, Ativan. His insomnia is, in part, due to his pain - he woke up four times last night - but also from underlying anxiety, the origins of which are still unknown. His anxiety sometimes overwhelms his thinking process so that he misattributes symptoms to his medicine; today he thought the TPN was contributing to his diarrhea. When he's anxious, his first tendency is to refuse the very thing that helps - medication. And when he does, the anxiety attacks come on with a vengeance. Craig was up literally every two hours last night with pain or general anxiety. No matter how we positioned him, he couldn't get comfortable.
Sometimes I wonder if he's scared of sleeping, as if sleeping somehow moves him closer to death. I mentioned this to the hospice nurse once and she confirmed that many patients fear sleeping at night because fewer people are around/awake to help. With less stimulation from the outside world, people can step further towards the process of letting go, or as the hospice nurse said, of moving to another world. I wonder if Craig also has some fear of the night. He calls out for help more often at night, and seems more frantic to stay awake.
His other symptoms of anxiety are manifestation of his need to maintain some semblance of control over his domain and range from angsting over handicap parking tags (we haven't traveled with Craig in over a month); to organizing his bedside table so everything is perfectly lined up in order; to frantically repeating requests while we're in the process of fulfilling them. It's somewhat terrifying when he's in full throttle; it's as though something takes over him. When they occur, there's little we can do to appease the situation. We try to help him by calmly talking him through the situation; we even verbally walk him through what we're doing so that he knows his requests are being fulfilled. When he's worried about moving to the side of his bed, we'll often say "now Erin's going to hold your back while Diane and I pivot your legs." It seems like small comfort, and we often feel helpless to do more. But he seems to appreciate the calm encouragement we offer.
As if the pain and anxiety attacks aren't bad enough, recently, he's been battling a case of borderline diarrhea, which is ironic, considering Craig hasn't had a natural bowel movement for the better part of the past six months. It's now coming out in droves (where's the happy medium?). He's been using a bedside commode in order to conserve energy; still, the sheer act of going to the bathroom is exhausting. Ten minutes on the commode is like running a marathon; he often walks away panting and drenched with sweat.
He's now wearing Depends, which helps to some degree, but carries the risk of infecting his ever expanding wound located near his tail bone. Though we wash the area and bandage it with sterile pads, it seems to be worsening, despite our best efforts. Thankfully, the wound is not infected, though we had a scare the other night. Infections typically appear red and will radiate heat; they also smell. We monitor the site by using a simple look, touch, and smell principle. A few nights ago, we noticed a strange smell emanating from the area after a dressing change. Ever the diligent sisters, Erin retrieved the soaked bandage from the trash, and we assessed the area by performing a sniff test of the bandage as well as the site. The three of us spent considerable time wafting the odor towards our nose as if we were testing a good wine before drinking. But, instead of taking in the rich aromas of blackberries with a hint of rosewood, or whatever the winemakers say, we were inundated by a nose-full of morphine with a touch of sour pickle. But was it infected? After about an hour deliberating over whether the smell coming from Craig's nether region was proof that the wound down south had become infiltrated by nasty and ruthless bacteria, we asked a hospice nurse to assess the area. Thankfully, she determined that it wasn't.
Thank God. I'm not sure what we could have done had it been infected. Antibiotics that would progress is dreadful thrush? Topical ointment to help clean the wound? Wait? And, if so, for what? Could an infection of that sort kill him? He's struggled through tumors, TPN, pain, and nausea; it's hard to imagine that someday all this will stop - that something will actually take his life. There will come a time when Craig will no longer be able to ring his bell for help; he won't be dangling at the side of his bed, holding his water as we talk about faith and understanding; he won't be there to watch the Lord of the Rings trilogies; or to listen to us sing off key.
It's hard living each day not knowing what may come. We approach each day wondering if it will be our last time to hold his hand; to tell him silly stories; to kiss his forehead and wish him goodnight; to say I love you. There's a new sense of desperation with all of us, but especially, with him. He grasps our hands tighter, and seems eager to return our "I Love Yous." He calls for us more, and seems anxious to have us near.
There have been so many occasions when we thought we were near the end; I feel like I've been holding my breath in anticipation for an unexpected plunge. It's hard to watch his body change from the sidelines, knowing that someday, some unknown change will simply be too much for his body to handle. To be honest, there are times I wonder how much more he can possibly take. When his red-rimmed eyes glisten with tears from a bad swallow or a bout of pain, I can't help but wonder how long can Craig reasonably exist at this state? When a simple touch on his leg leaves huge indentations, I can't help but wonder if it's possible for him to lose more weight; become more swollen; develop more bed sores; or be in more pain? I can't help but wonder if all this is fair or humane. Is it fair for Craig to literally waste away, bound to a bed? Is it fair for Craig to have to wonder what death feels like, or what, in the end, will ultimately take his life? Is it fair for Craig to suffer endless pain, diarrhea, bloating? Is it fair for us to sit by his side, and tell him that it's going to be okay, knowing all along the answer?
It's not for me to decide. Craig has a tremendous will to live; it's his will that is keeping him alive. As his hospice nurse says, we have to ride the cancer wave -- when Craig is ready, life will naturally take its course. His fighting spirit inspires us to continue on. Though we are prepared for what will eventually come, like him, we are not ready to give in, nor do we want our time with Craig to end. We've been at this a long time; we've seen the season's change and people come and go. We're exhausted but we're not giving up. Someday, there will come a day when our journey will end, and with that end will be a deep sense of sadness and loss - loss for what was, loss for Craig, and loss for the bright future that was once ahead of us. Knowing that we're on borrowed time gives us the energy to continue. What can we possibly do but love Craig, honor the person he's become, and be by his side through it all - restless nights included. - J
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