This one's gonna bruise

These days speak of a helplessness so profound it stops in the throat somewhere between your voice and heart, taking both. It's a panicky, agitated feeling beyond comparison. There's no one to reason with, nothing to stop or manage. It's as desperate and unsatisfying a feeling as throwing rocks at lightening and screaming at the rain. Craig's cancer is as ruthless as it is fast -- the scrappy type that would shoot the drummer boy just because; that kind of mean has become extremely difficult to predict and manage.

For many months, "fighting for him" meant unearthing any treatment; adjusting meds to combat chronic pain and nausea; buzzing his back as he vomited; planning outings and things to distract him; throwing our bodies, our hearts, our love on the tracks to slow the same damn train that eventually picked mom as its passenger. "Fighting" now looks like the girls jumping to his side at any hour of night, bleary-eyed and dog tired waiting word for what he needs. It means using a draw sheet to move him since he's become too week to move himself; bringing him the urinal as the bathroom is now too far a walk; taking out his contacts for him when he doesn't have the dexterity or energy to pick them out himself; turning him to prevent his paper thin skin from completely splitting in two as it threatens to do at any moment; mopping the sweat from his brow from recurrent tumor sweats; embracing him in a bear hug as a sister cleans him and his commode; or, simply buzzing his back in the middle of the night just because. These activities are all too familiar to helping Mom and we are there for him for every need just as we were her.

For Craig, fight looks like a man coming to terms with the end of his life, and holding on to absolutely everything in life for fear of losing it. It kills me that we have nothing more to help him -- to maintain health, to stabilize his disease, to live. We can't even help him find a comfortable sleeping position as easily. These last few days have been miserable for him with painful skin breakdown near his tailbone, and growing pain in his abdomen. He awoke every hour and a half last night groaning and needing help finding a new position. Yet, today, no position we put him in sufficed. Nothing was comfortable and it wasn't simply a physical discomfort but something on a psychological and emotional dimension, as well. There was an agitation with him yet unseen. He even noted that he struggled with processing thoughts, made evident in the time and accuracy in which he responded to questions. The corners he turns now approach at a faster clip, and he turned yet another with this new level of pain and distress.

All the words ever created couldn't describe how horrible a feeling it is to watch my brother suffer and not be able to help him apart from loving him, being by his side at all times, and eagerly doing whatever he asks of me. Though he replies "definitely" when asked whether he likes being in his apartment and having his sisters take care of him, I wish there was something more we could do. It reminds me of a scene in "I Dreamed of Africa" where Kim Basinger frantically asked her son (loosely quoted) "Do I cut off your arm? I don't know what to do? Tell me what to do! Do I cut off your arm?" after being bitten by a snake. Of course, I'm not going to cut Craig's arm off but it's a similar sense of helplessness not knowing what to do to help him, and it bruises a part of me each time he's in pain or otherwise uncomfortable. To date, we've been able to triage his symptoms and do SOMETHING to cut the edge. Rotating him, giving him new doses of Ativan, suggesting a bolus bump on his morphine pump, but none of these surefire remedies seem to help him. It's in these moments when the "day to day" moves just enough to let the "hard" in and that "oh my god!" feeling that this is really happening - we are really seeing Craig fade away, seeing him become emaciated, seeing him suffer from this horrid disease.

This is what I'm witnessing. For Craig, it's what he's FEELING. Monday, he began noting in a more distressing manner certain changes he had experienced. Whereas before, he'd assert that "he was more or less OK", the latest of symptoms have hit a nerve. I asked him how he was feeling Monday morning and he replied (direct quote), "I'm feeling worse today and I'll tell you why. It's kinda heavy. I'm having a really hard time talking, just like with Mom and her process and how she couldn't talk anymore. That's scary....I mean it's very tiring to try to talk." Later, he explained the fears once again to the social worker and went on to say, "I'm spacing out a lot more. My mom seemed to space out quite a lot during her last days, so every time I space out I get scared that that's coming". As mom died, we feared that Craig would internalize the images and symptoms and that they would one day become his looking glass at his own deterioration. It's heartbreaking to see that fear come alive and the best we can do is help calm nerves by letting Craig know that her passing was peaceful, comfortable, and without pain (easy to say when you're not the one dying).

Sandy, the hospice nurse, graciously stepped into the arena of "letting go" of which none of us have adequate skill sets to discuss. It began with a discussion of his immediate symptoms, namely his growing fatigue and weakness. He asked her how he could combat the worsening symptoms. She softly told him, "You can't. You really won't be able to and believe me that is something we'd love to help you with if we could". She went on to say that it's like riding a wave. Craig should take advantage of peak energy days by doing the things he loves, but listen to his body and rest on low energy days. She explained to Craig that he's in a transformation period, a point of preparing for the next part of life. He noted what that looked like or didn't look like for him, and that image seemed somewhat distressing to discuss. I tearfully interjected, "Your spirit will live on in us. You will live on in us. That is the next part of life". Jill added that he will walk beside us throughout our lives, and that we will be okay. He turned to look at us with full, tear-rimmed blue eyes. For the first time, Sandy, Craig, Dad, Jill, and I broached the subject of letting go - letting go of the physical attributes that define him, letting go of the work of managing the symptoms, and somehow accepting what is happening to his young life. Sandy said that right now that might mean allowing himself to sleep if he needs rest and to say "no" when he doesn't feel like doing an activity. In time, his acceptance may lead to letting go on a larger scale.

The train that took mom roars nearer, and for Craig it's moving much too fast. He's not ready to accept what's happening (understandably so), and uses every ounce of energy to will himself to do something, ANYTHING, in defiance of what is overwhelming him. Very quickly, however, his world has shrunk from mountain escapades, to trips to the aquarium, to park outings, to his apartment. Just a few days ago, we were able to visit a fountain down the street. Now, it's difficult for Craig to move from his bedroom to his living room. But that's today. There's no telling what tomorrow will bring. He may dig deep to see the dinosaurs just as he hopes.

One month ago, various medical professionals, including Dr. F, legitimately thought Craig had only days left. They feared him passing away while up in the mountains and we braced ourselves for that likely scenario. His vital signs and physical condition accurately painted that scene. That was a month ago. Where he is today is a stark and more tenuous variation of the same theme: incredibly weak, incredibly thin, incredibly sick and in pain. Each of his hospice helpers is surprised to see him as lucid as he is despite vital signs that are off the charts -- vitals that indicate just where he is in the process. As the on-call hospice nurse said this afternoon, "you just don't see this very often [for someone with his abnormal blood levels, failing kidneys and liver, heart that is working overtime with a BP of 150/100 and pulse of 129]". She was sincerely shocked and it's a testament to his strength and character that he's still alive.

Craig will fight for his life and no one expects anything less or will suggest anything different. We have been, are and will be there fighting right beside him unconditionally. Craig's comfort and peace of mind are our only concern. But, that's not to say we aren't affected and it isn't unspeakably painful watching him suffer from each new symptom knowing they bring him that much closer to the end. Like Mom's process and her passing, this one's gonna bruise. ~E