Wind in the Sails

(Written around 9pm)

I'm in Craig's room watching his head lurch forward, tense up, then fall back to the pillow. It's anyone's guess whether it's from hallucinations, which he's been having more often, or reflex to sudden excruciating pain. I'd like to believe it's the former but my hunch is the latter -- he's gripping his stomach as I type. They've doubled his Oxycodone for pain management instead of giving it to him every hour as previously scheduled.  His Fentayl patch was also increased. The message between the lines is that Craig is having a lot more pain.  

Symptoms change almost daily; such is the pace of life with cancer. The wind in the sails can shift dramatically and it seems they're pushing us off-center as time ticks on. Things aren't well. Craig's abdomen seems more distended and you can hear the fluid sloshing around his diaphragm, belly, etc. It's impossible to see and witness, standing powerless to do anything else but ask if he's ok. Of course he's not ok, but we ask anyway and bring anything he asks to make it better if the pain, sweats, nausea become more off-kilter. He walks with more pain, grunting with each step, and wakes himself up from sleep with a loud yelp. It's startling and gives me whiplash each time as I turn to see if he's alright. 

The doctors have reduced the volume of TPN so that there is less fluid coming into his body, since his albumen is so low (fluid is leaching out of his cells). His breathing is much more labored due to the pain and pressure from the tumors. It seems breathing itself causes pain. We sit and stare, memorizing his face and mannerisms as we did our Mom. He doesn't talk much; hasn't for some time. But now, when we say "I love you" he says it back with a bit more meaning. Yesterday, Jill and I said "you know we love you?" and he said "I know that". This exchange was reminiscent of asking Mom if she knew how much we loved her. She cried and nodded her head yes. I told her it is without boundaries, without measure, infinite within me. That is true with Craig; the love for my older brother, my best friend, is deep, pure and eternal.

Earlier this evening, as the sister pod stood around his bed, Jill told him "I'm glad you're my big brother" and he said almost immediately "I'm glad you're my baby sister, as I am with all of you" (meaning Diane and I). These are the exchanges we yearn for and cling to when they occur. We sit in his patient room all day waiting for them, never taking for granted the moments when he has energy to talk,  laugh or take laps around the hallways. Earlier in the day, we played "his" music -- blues music -- and talked about blues musicians he's met along the way. Once the CD's were finished, I turned on another favorite, Seu George, from Jill's computer. Craig bended his ear further and turned slowly. I asked if the music was bothersome and he quietly said, "noooo. I like it. This is really nice." There's an honesty in his statements that makes me want to stop the earth from spinning if it meant giving Craig some sense of pleasure for a moment. I'd do anything I could to give him peace, comfort and happiness. It was nice that we could at least give him enjoyment through music.

The other day, as we pushed Craig around in the exact same wheelchair Mom used (her wheelchair), I saw people, couples, pregnant ladies, folks otherwise blissfully happy with their lives and for a moment I pretended that was us....weightless. Then I blinked, looked to my side and saw the bags under my sisters' eyes, Emily pushing my brother in Mom's wheelchair, Craig's hollow cheeks and brow sweating just because.  It's hard not to be a bit envious of a similar time when things weren't so critical and hard -- a time before strategizing medical care and wondering what will happen...when. But, I also heard our laughter, though quiet; saw the smiles, thought not as broad; felt the intimacy, camaraderie and connection of five young people who have shared a common, personal journey through hardships few have experienced so early in their lives.  And, I knew through whatever hell we are living, just how incredibly lucky we are to at least have each other.

~ E