Idle on the Flipside

And, just as quickly things change. We’re back in the hospital after a rocky Friday. Craig awoke yesterday morning with a slight fever and moan-inducing pain. Though we pumped him with Oxycodone, by noon, he was still uncomfortable. He also awoke with a nasty rash on his face, which only worsened as they day progressed. Not wanting to take any chances, I called the Pathways nurse for a consult, and she agreed to stop by later in the afternoon to examine Craig. Her timing couldn’t have been better.

Earlier yesterday afternoon, Craig aspirated on his vomit during a Friday matinée. Perhaps he just didn’t like the X-Files (wouldn’t blame him) and was giving ol’ David D. the what for. In any event, Craig “got sick” (a sanitized version of vomited) just before the show started, and was unable to make it to the bathroom in time; hence, the swallowing attempt. The vomiting set off a coughing episode which lasted until the Pathway’s nurse arrived.

The Pathways nurse entered the room and, as Erin noted, whispered “shoot” at first sight of Craig, and took a seat on her knees just by his bedside. After taking his temperature (measuring 101). and vitals, she suggested that he most likely had an infection, and that, unless he’s ready to "throw in the towel" (her words), he should go to the hospital. Not understanding the gravity of having an infection, Craig was initially reluctant to go, especially since he left the hospital just a week ago. In general, Craig has a difficult time inferring aspects of his disease from euphemisms and veiled warnings of imminent impairment.  This is understandable. He’s a young guy fighting for every day he has. Unless someone comes out and says “This is what’s happening, and these are the options and likely scenarios” Craig’s going to feel as though his symptoms “aren’t that bad.”  He often downplays his symptoms, as if calling attention to them makes them more real (also understandable). [As example, he just told me he's been having pain (level 6) after urinating, and that he feels like he can't empty his bladder completely.  I told the nurse, and she followed up.  He told her he was able to empty his bladder and that the pain 'wasn't that bad'.  I interjected and told her what he mentioned just a few minutes prior.  He responded: "oh yeah, that."  It's like pulling teeth, I swear to Jesus. ;)]

To be honest, getting C to understand where he is in the process has been difficult.  This is his process; his life; and his body that’s slipping away from cancer. He's been "living sick" since February, and has had to feel the pain, and now see the growth of the tumors, on a daily basis.  Coping processes vary; Craig has put himself into fighting this disease, and up until a few weeks ago, believed he had several years ahead of him. Hope is important.  People have turned the corner, so why not Craig.  But, with advanced cancer, there comes a time when expectations have to be modified to fit what's realistic.  The palliative care team at Uni. C helped mom come to terms with her process.  Likewise, Dr. F. helped C understand his new reality this past Monday.  Though it's a hard reality to embrace, we're now able to talk about his goals and wishes more freely.  Still, though he now knows he's not looking at years, it's hard for him to understand that any one problem could be life threatening.  Hence, the initial reluctance to go to the hospital.

After beating around the bush, Erin finally asked the Pathways nurse to clarify her statement (to speak in terms of criticality as in 'if he did not go in, then this would be the likely result') since it seemed Craig didn't understand the severity of his illness. She told C that if he didn't treat the infection, it'd likely take his life. At that point, C agreed to go. So, around 5 p.m., we grabbed Craig’s blue bag and headed out on 1-25 towards the hospital. While en route, I spoke with the oncology attending and asked that they help expedite Craig’s process. Within three hours, we were up on the 11^th floor, our fastest turnaround yet. And sure enough, his chest x-ray showed pneumonia. He’s now on a host of antibiotics, which should also kill other possible infections he may have in the fluid surrounding his abdomen and in the pleura sac surrounding the lungs (which has increased slightly). They considered tapping the fluid, but have decided against it, since there’s a) not enough fluid to tap; and b) would be a temporary fix.

So now, we wait. The date hasn’t been lost on us. Just a month ago, mom succumbed to her illness from what we believe was a mystery infection. Craig’s in a different place. I think they’ll likely discharge him in time for tomorrow’s concert. Still, this recent trip is a reminder that Craig’s body is more susceptible to infections, which, at any point, could take his life. Though C has allowed the hospital to place a purple band on his arm indicating Do Not Resuscitate, it’s clear that this isn’t his time, and he’s not ready to “throw in the towel”. Who would? Maybe there will be a time in the near future where we’ll need to sit by and let the process take its course. But why rush the process? If his infection is treatable, it makes sense to pursue antibiotics. As C said, it's hard living on a time frame; he's made it clear that time, however much, is valuable, and that he's not ready to "throw in the towel" just yet.  Treating this infection allows Craig to buy more time.

Coming to terms with your own death is a process that can’t be rushed. Nor can it be completely understood. I feel there’s a certain amount of pressure for people at the end stages to stop trying, as if to continue is some selfish desire to keep going, or worse, an indication of denial. Defied by his symptoms, derided by his cancer, and dismissed by most of his chemo agents, it must be hard to muster the energy to lobby for more days. And to have to explain to healthy people the rationale for continuing in the face of death must be particularly grating. I can’t fathom the spectrum of emotions Craig must be feeling, and if I were in his position, I'd likely do the same. Still, as an outsider, it’s hard to see him in pain, and to witness his fight, knowing all along the outcome. I feel like the proverbial helpless by-stander, with all the gusto, zeal and nervous energy, but no power to help. I'm having a hard time understanding how, after all the talk about a 0% recurrence, Craig is now dying of cancer -- that he’s nearing the end of his process. Intellectually, we understand it, and can see the cancer physically taking its course. But it’s still hard to accept, especially for Craig.

Like Mom, we'll know when the time comes, and he’ll be the first to tell us. Until then, he still has goals and dreams, and so long as it’s reasonable and doable, we’ll be there to make sure his wishes are fulfilled. If that means more trips down I-25, then so be it. -- J