This post is copied from Brad's personal blog, The Road Taken, shortly after his diagnosis.
Thursday, October 27 3:54 am. Surgery Day.
I’m slowly accreting and storing up saliva in my mouth in order to preserve the 12 ounce fluid maximum I have at my disposal between midnight and 6 am before my surgery this morning to remove my left kidney and the tumor engulfing it, which is causing pressure and persistent pain in my left flank.
I have until 6 am to consume those 12 ounces; until 8am to show up at the Cleveland Clinic surgery center and just about 10am or so when I will go under for 4-6 hours whole the doctors before the nephrectomy, which will be combined with removal of my adjacent thrombus – which is where the tumor has a slight blood clot formed in my renal vein, nearby inflamed lymph nodes, and the left adrenal gland. That last bit was news to us yesterday as no one had mentioned it thus far – we raised questions, it is apparently the area most likely to become the next “host” for a major tumor, so it’s a preemptive cautionary measure.
The problem with this strategy on the fluids is I’m also pacing the room for the pill I want, it’s been ten mins and I have both a dry throat and a mouth full of saliva. Basically, I’ve misplaced the pill *(again), writing is more urgent, and I’m trying to keep a brave face for everyone. Pace. Pace. Pace. The pills were literally in the vest coat of the chair I’m sitting in.
*Historically, my biggest blind spot is literally what is staring me right in the eye. A favorite childhood story includes me frantically running through turning over every pillow, blanket and nook of our house as we were all gearing up to play basketball. 8 mins – 15 mins – 21 mins passes and I finally emerge in the driveway, still totally flustered and Dave goes, “Dude, what are you doing?” I raise my hands in the air and pump my firsts, “Where the hell are my shoes!?”
“You’re kidding, right?”
“Brad, look in your fucking hands.”
Then, just three days ago on Monday, after the Cleveland Clinic called to schedule the surgery this morning, we were gearing up with my sister, brother-in-law, Dana and our nieces to go outside to take pictures and play pogo stick. We’re just about to leave and I say, “Wait, I need to go find something,” and allow at least 30 second to expire before I look in my left hand and laugh out laud – I was looking for my phone.
My back is in a lot of pain. The doctors are all very optimistic that the surgery will reduce the pain and make day-to-day life more manageable. That’s good, because yesterday I found myself shaving the likely IV line areas because I think the two hair rips thus far have been utterly excruciating – pointing out I’m not exactly made for this stuff. Who is?
I’m trying so hard to get it all in before surgery. Podcast. Blogpost. Words of love and encouragement.
We published the podcast (imperfectly) last night finally … I’ve been busting my ass to get it up and running. I’m just really proud of it – the honesty, devotion and love we all bring to the table. I’ve felt super energized working on it and think it’s been incredible therapeutic thus far. If you haven’t, please check it out. We know we’re still very much in amateur mode with the mics, RSS feed, etc., but that’s ok. Getting the content out in this case is much more important.
So, I have 12 ounces to consume. I just made a Starbucks run. Parched, wanting both caffeine and soda water, I got the clever idea and asked how many ounces in an espresso. After two blank stares, I somewhat cuttingly said, “you guys know where you work, right?” Then one barista confidently announced, “1.98 ounces”. I ordered a double. Bought a 16 ounce Peligrino, a cup of ice and emptied precisely half of it.
We’re in business.
The last two nights, Mom joined us with Bradley, which is really important. I’ve now seen all of my immediate family members and spoken with all of Dana’s. Having them close to us, the diagnosis process, and the treatment plan is key to my success moving forward.
Perhaps hard to believe, but so much of our time the last two weeks has been devoted to surfacing tension, fear, areas of concern and conflict. At one point, my own fear and insecurity let to a very intense exchange between me, Dave and Dana. It was about diet choices and maximizing my chances to live. It was about whether or not I was “fully committed to healing” or to “treatment” or to whatever it will take for us all to succeed.
And, because of Dana’s history with Hodgkins and her decision to try a different treatment path when it first showed up, I’d built a very deep well of conflicting or at least challenging sentiments about how debating treatment options or engaging in what I believe is a completely useless fight between “conventional” and “holistic” medicine philosophies. Or, that any micro-decision anyone of us makes along the path to have a sugary snack, an alcoholic drink or whatever indulgence give you the basic feeling of being alive in the moment somehow either a) caused the cancer to form at the moment it did or b) will cause it to recede or progress. I think that’s bullshit. Now, if I’m abusing those things, or jumping in front of buses, by all means, I warrant a challenge. But, to me, enjoying indulgences – like food or skydiving (not as fun as I thought it would be) or simply not ‘being productive’ are good for the soul.
So, I’m trying to move forward with a new framework for how my cancer will be addressed; I call it simply complete treatment.
To me, complete treatment fully owns this fight against stage IV cancer. I will only win and live out with dignity and fullness if the first and most important part of my treatment plan is embracing all of these elements, and placing overwhelming focus on the first and most important dimension: relationships.
Complete treatment means time and connection to my dearest and closest relationships; on having deep, challenging, loving and enriching conversations together about our lives, current events and philosophical questions. On having patient, calm and supportive quiet. Open communication channels. Options to share information, challenge each other – yes, even me. In involves this very ‘bursting out’ creatively in my day to day, living courageously with this blog, our podcast project, and other writing priorities I have. On contributing to my community, whether I’m officially “working” or not.
Complete treatment places in close proximity evidenced based medicine. On finding the best practitioners in the country to support my case. On understanding the challenging and never easy decisions between treatments that have highly variable success rates at extending life or improving health outcomes. It involves being an empowered patient, willing to ask for what I want and need, and turn down things I don’t. It involves consulting many experts; and knowing these extraordinary doctors have blind spots, biases, and are capable of unintentional mistakes. So, don’t automatically defer to every doctor recommendation. Engage. Use the evidence available. Use the experts to your every possible advantage.
Complete treatment requires healthy habits; good nutritious food; and embracing the suite of tools and therapies that can make me feel rested, peaceful, nourished and engaged in all facets of life. Maybe I won’t take to acupuncture, but I’m going to try it. Maybe Chinese herbs are a good idea; maybe not. But, we’ll ask an expert and see what they say (the recent expert we consulted recommended against it at this stage). It involves physicality – golf (please!), yoga, long walks, running and weights if I can muster it. These items may not alone ‘cause’ or produce and evidence based outcomes for my cancer, but I don’t care about that: I care that they are part of complete and systemic approach to my care.
Complete treatment requires humor, grace, humility and gratitude.
Hell, it may even include brevity at some point.
It’s 7:28 am … I need to walk to the surgery center in 17 mins, and have to shower and hold Dana’s hand.
Complete treatment also means knowing when to stop, get off your soapbox and go back to loving first.
Wish me luck today. Catch you on the flip side.