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.
This post is copied from Dana's personal blog, The Thunder Stealer, shortly after Brad's diagnosis.
I can’t believe we are fucking back here again. This is not supposed to be our story. This shouldn’t be anyone’s story.
This is not our story.
I’m at a loss for words, but I am not at a loss for feelings. Outrage. Sadness. Shock. Fear.
I am afraid.
This time I am not the patient. I am not the Thunder Stealer. This time, it is my love, my rock, my everything who was given the diagnosis. Although it is my life we are fighting for too. It is for my future. For our future. Right now we are fighting to keep the precious future we have spent over a decade building intact.
And I am fucking angry at how unfair life seems in this moment.
Honestly, part of me expected cancer to remerge at some point in our lives. I prepared for it. I braced myself for it. I braced Brad for it. But it was for me. Never for him.
I was never prepared for that.
I feel blindsided. Being on the other end of this diagnosis. Being the spouse watching her love go through the pain and fear and endless set of decisions required. The never-ending questioning. The poking and prodding. The looks. Oh, the looks.
I don’t know how to be the caregiver. The supporter. The spouse.
It is something that came so naturally to Brad when Little Hodgy suddenly appeared in our lives. He knew how to handle me. How to handle others. He knows how to balance being strong and being vulnerable. Knows when to laugh and when to cry. When to quietly reflect and when to bring others in. He just knows. Knows what to do. How to handle life. Even when you've been given a shitty hand. It’s because of these innate qualities that I know Brad will be able to cope and handle everything this diagnosis throws at him. At us.
I just hope that I can do the same.
This is not our story.
I find myself fluctuating between channeling my inner Thunder Stealer - full of courage and fight - and on the verge of a complete and total meltdown. Between feeling terrified and also feeling comfort in the vast amount of knowledge we have.
Because we’ve been here before (sort of). We researched. We learned. We changed our lives. We aren’t starting from scratch.
But this is different.
I knew how to handle my own illness. I took control and owned it as best I could. I used this blog as my virtual punching bag, uppercutting f-bombs all over the screen to help me deal.
But this is Brad. My Brad.
I don’t know how to own this. I can’t even say it out loud. I can barely type it.
Stage 4. Metastatic. Rare.
This is not our story.
And because I can’t say it, I’ll let Brad say it in his own words on his own blog, The Road Taken. And if you don't know Brad, reading his words will give you a glimpse of the man he is. Calm. Thoughtful. Strong. While I write an angry "f u" to the world, Brad's words pour out with grace and beauty. He is the zen yin to my angry yang.
Honestly, I was hoping this blog would fall down the google ranks and into oblivion. But here we are. Pulling The Thunder Stealer out of retirement as a way to once again process what life has thrown our way.
And as I continue to use this platform as my virtual punching bag, Brad will be handling this in a different way - in a very Brad way. In addition to writing about it on his own blog, he’ll also be podcasting about it (along with myself and his best friend Jeremy) - and encouraging others to join in on the conversation. To talk about what it means to live life courageously. Something Brad did long before this diagnosis.
Having deep and meaningful discussions has always been an integral part of Brad and whether we wanted it to or not, the universe just gave us a whole new set of topics. So listen along over at Defending Your Life as we laugh, cry, and get weird together on this journey.
This is our story. Just not forever.
This post is copied from Brad's personal blog, The Road Taken, shortly after his diagnosis.
This morning, I woke up around 5:40 am.
It promised to be a beautiful day. Almost 50 degrees out, we were in for an epic sunrise just before 7am. We climbed the stairs in our loft –me and Dana with coffee and tea, and my twin brother, Dave with water. Up on the roof deck, we marveled at the breeze crested river, amber orange hues flooding the Belle Isle view, the glow of a waning moon over the westward sky.
But, when I woke at 5:40 am, I was drenched in sweat; writhing in pain; short of breath. Although not the most sick I’ve ever felt, it was the most afraid I’ve ever felt in my life.
I got sick in early September. One night, suddenly, I woke to severe lower back pain. At first, I blamed my hamstrings. Ten days after my symptoms started, I stubbornly went to a little day clinic and the nurse practitioner nearly exulted when she clapped her hands and shared: “You have an infection.” I took antibiotics; 10 days later, I felt better.
But the pain continued, and over the next four weeks, I would struggle with more localized pain in my left flank, night sweats, general fatigue.
Lucky for me, I have an ace in the hole. One of my best friends also happens to be a 99th percentile medical boards doctor–as in the top 1%.
I suppose I helped him endure his first few years of med school as a drinking buddy and comrade in all of our desperate search for truth, belonging and finding friends we can jive with. Josh, except for lying about his age to me when we first met, was just one of those special friends to me, then to Dana after she moved to Michigan. Indeed, after our “big wedding” performed by my best friend, Jeremy Potter, Josh performed the official ceremony on the first day of fall for me and Dana and a handful of friends and family. (We’re still not sure we’re legally married, but Josh was a Captain, and we were married on the end of the dock over the water. Legit enough to me.) All in all, Josh has an intoxicating intelligence, which is fortunate, because he will drop it on you, over as many drinks as it takes. But, we’ll save those anecdotes for another time.
Josh and I met on Friday, September 30th for a beer. He suggested I come by his urology office and meet one of his colleagues for an appointment and an ultrasound of my left flank. By Monday I had appointments set. By Thursday morning, October 6, it was clear my left kidney was dilated and required a CT scan to get a clearer picture. We scheduled it for Friday, October 14.
By Wednesday, October 12, 2016, I was having fevers as high as 102, a pulse rate over 110, and severe left flank pain. My doctor (and Josh) each suggested I come into the ER to accelerate the CT scan. So, by 7pm, Dana and I enrolled in St. Joseph’s Hospital with general “lower back pain” and a request to schedule a CT. I’d never been to the hospital before – but we got a small ER room, some pain meds and waited for the CT contrast to take effect. My scan lasted until 11:14 pm; I texted Josh, who was home, over 20 minutes away, “Scan done.”
The clocked ticked and as no word came back, we waited anxiously. Then, just before midnight, one of my best friends, a world class surgeon, walked unexpectedly into the emergency room in his white lab coat to share the news. Josh sat by my side, tears barely welling up in his eyes as he tried to calmly explain to me what the CT scan showed. He did it out of love, to avoid us hearing such horrifying news from another doctor.
It was a beautiful gesture, and a movie moment I’d also never wish on anyone else. “Brad, you have large tumor on your kidney, about 10-14cm large. And, baseline results indicate several tumors on your lungs and one on your liver. We suspect its renal cell carcinoma. If confirmed, it’s stage IV.”
We sat in silence. We asked questions. Josh patiently answered them as best he could. More tests were needed to diagnose me and ensure the disease had not metastasized further in my body. Two days later, biopsy complete, we’d confirmed the “good news” which was that there were no tumors in my brain, bones or other organs. Two follow-ups were set up with the St. Joe’s Team and, with their support, the Cleveland Clinic. By Friday evening, we were discharged.
As I type this paragraph, it has been a full week since I entered the ER, but less than 24 hours since I left the last one.
Yesterday, I felt good. My pain med regime was working well, I’d actually clocked some hours on the job, my twin brother was in town, and we were having a good time. Then, at 4:30 pm I had a sudden purging of virtually everything in my body, causing me to go slightly out of consciousness,and putting Dana and Dave into a serious panic – what was happening? My doctors were concerned I’d had a blood clot in my lungs. We went to the ER to clear that risk; exhausted, we got home at midnight.
Last night, I sweated my way through four outfits, continued pain medication to no avail, slept erratically. When I woke at 5:40 am, I was panting, hurting, changing my clothes and, for the first time, really heartbroken.
I once wrote about something like 10 cries in my life from the ages of 15-32. I’ve had 10 since last Thursday. They are good.
But this morning, I felt this was all too soon. The shift from sick to seriously ill to hospitalized to given daunting odds to having my wombmate rush across the country to be by my side, and the countless gentle hours with Dana these last 7 days, and the rich conversations with friends and deep love across every corner of my life – to the utter panic of an urgent hospital visit and waking up feeling half dead. Today.
I tried to quietly dress. Turn on our dim lights overhead, and grab my journal. My brother emerged and we spoke. I cried out the fear before the dawn today. After the climb, I looked out over the sunrise and arched my head 180 degrees across the sky to the moon and back. The breeze in my face, I looked over at Dave and Dana, and out across the horizon, and took in a deep breath.
I took it all in and knew: this is it. This is the fight. This is me world, defending my life.