I'm coming to terms with having refractory cancer -- the kind that keeps on giving no matter what treatments we throw at it. I'm working at incorporating the disease into my life so that it doesn't take over my life. No matter how badly I wish it wasn't hosting inside me, it is, and I have to deal with it. The relationship that's grown between Hodgkin's Lymphoma (aka Hodgkin) and me is like one with a toxic ex-lover, the guy that just won't go away. On Facebook, our relationship status would read: "It's complicated."
Hodgkin is destructive and abusive but somehow we keep finding each other. I fall back into its strangling arms. I dig my way out with one tough treatment after the next, think I've moved on, then it -- he -- is back with a vengeance, overtaking me. There is nowhere I can hide, so I have to dance with the cancer, adapt with it. I also have to give tough love back until we can find common ground amid the battles and the tender moments.
Cancer, its treatments, and the very small world it puts me in at times, are what's been familiar for so long now. There is a sick, unwanted comfort found in that space. Having ridden out the side effects of nearly 30 chemo drugs in a variety of combinations, radiation, two autologous and a donor stem cell transplant, immunotherapy, and several early phase clinical drug trials, it's the aches that are familiar. The fatigue is familiar. The nausea, the mood swings, the foggy-headedness are familiar.
What's not familiar is when the treatments are working and I'm given time free from cancer's stranglehold. It's at these times that I don't feel Hodgkin's breath at the back of my neck, teasing with kisses and threatening a comeback. When he stops forcing himself on me, I'm able to take a deep breath without coughing, wake up without pain, or crack a joke with perfect timing. The fear of his cold touch and threatening grip subside.
I don't realize how much Hodgkin is holding me back until we're on "a break." When I have the upper hand in the relationship, all parts of me feel aligned again. It's bliss run rampant. It's then that I build up my strength to be ready for whatever our next round brings. I know from our history that he's never gone for long. Even so, when he does recoil, I ache for a scenario where while he's down I've moved so far past him that he can't catch up.
My relationship with cancer will forever be evolving. I hope for a clean break. Yet, even when we say goodbye for good, it will take a long time to heal from the forever imprints our time together has made on my being -- a tattoo inked during a four-year (and counting) bender.
Even now, during the times when Hodgkin and I are living in harmony, treatment is tolerable and life is fairly chaos-free, small things can send me flailing back into the dramas of our past. I will hear, feel or taste something in the air and like flashbacks in a cheesy romance novel, I'm right back to our tumultuous times together -- times of rawness a Hollywood script can't give justice to. It'll be just me and that trigger and the rest of the world spinning out of control around us. It can be the scent of an alcohol wipe, the sight of a pulpy blanket, the twitch of my oncologist's eye.
The memories of my most heated times with Hodgkin come flashing at me like a paparazzi swarm. I am in slow motion and completely transfixed with jarring images of PET Scan hot spots, bloody gauze, painful needle sticks, and mustard yellow-colored vomit buckets. I'll find myself itching at glue left on my arm skin from the endless strips of medical tape -- glue that isn't there. Everything around me spins at dizzying speeds and there I am, unable to move, unable to see past the torture of my tormenting lover.
Then it's over and I breathe and I see my physical and emotional scars in a new light. They are tattooed reminders of the benders that yes, I roared through, but understand I am still sobering up from, still nursing the hangover, still a little buzzed.