I met a guy at a brewery recently. He was a friend of a friend of a friend from Detroit. He was a close talker - and not in the charming and intimate kind of way, but in the too-drunk-to-pay-attention-to-boundaries kind of way. After a couple minutes of small talk, with his warm alcohol breath in my ear, he slurred “I heard about your husband.” Apparently moving 200 miles north was not enough distance to separate this new life from my old one.
“Yeah. How did he die?”
I had zero interest in sharing the most affecting part of my life with this stranger, but I must admit, I did respect his complete drunken disregard for platitudes and his desire to jump straight to the juicy details.
“Cancer,” I replied, leaning away.
“Did he smoke?” he asked, leaning back in towards me.
The question hit me like a punch to the gut. That was my cue. I stood up and walked away.
“Where are you going?!" the drunk friend of a friend of a friend yelled before getting distracted by a nearby buddy with a fresh pitcher of beer.
If Brad smoked, did that mean - from this stranger’s perspective - his terminal diagnosis was justified? That somehow he deserved to die? If Brad smoked, did this tragedy somehow make sense?
The truth is, when we first met, Brad did smoke. I’d walk by his ground floor apartment on my way to class and see him sitting on his patio with his just-woke-up bedhead - a coffee cup in one hand and a cigarette in the other, scribbling in his journal. Even though he had quit shortly after, and been a non-smoker for the majority of our decade plus relationship, when I think of Brad, that version still vividly pops up in my mind.
I get it. I get why this stranger wanted to know if he smoked. Healthy 35 year olds aren’t supposed to die without cause, right? One day he was fine, the next day he wasn’t. It’s not supposed to happen that way. So we create a “reason” so we can assure ourselves it could never happen to us. That drunk friend of a friend of a friend wasn’t actually asking how Brad died. He was asking why Brad died. So he could reassure himself that he wouldn’t - couldn’t - die the same way.
I don’t think that friend of a friend of a friend meant to be offensive. Whether he was aware or not, he was asking the question that would allow him to continue living in blissful ignorance. He was asking the question, so the other question - “could that be me?” - wouldn’t linger in his mind. He probably left that day and never thought about Brad again.
But his question stuck with me. And if I’m being truthful, I had my own period of time, wondering similar questions. Why did he die ? Was it a medication he was on? His alcohol consumption? Something in the water? A hidden toxin in our home? His diet? The way he carried his stress?
I was desperate for answers. I too, wanted to know why Brad died.
I understand where this friend of a friend of a friend was coming from. I do. But still, it made me feel like shit. It made me rage with anger. It made me want to stand up and scream at him, “does that make it ok?!”
Instead, I stood up and walked away.
People say a lot of unintentional shitty things, completely unaware of the effect it may have on the recipient. And I’m not necessarily mad at them for asking the insensitive question, no matter how valid/invalid it may be. I’m mad because it triggers my own anger and my own desperate desire for questions - questions I’ll never have answers to.
But even if the questions themselves aren’t “wrong,” for the sake of the grieving, I’d encourage you to really try to avoid being the person that triggers such rage in another.
So to help you out, from my experience, here are things you should probably avoid saying to someone who has recently lost a spouse (especially if you are a stranger. Or even a friend of a friend of a friend):
"Did he smoke/drink/do drugs/eat fast food/etc.?”
Even if he did and even if those lifestyle habits did lead to an illness, it’s not helpful. It provides zero comfort. As mentioned above, it triggers a Daenerys-Targaryen-just-lost-her-dragons level of rage. Even if I could connect the dots as to why Brad got a terminal illness - even with those answers - I’d still be just as sad/angry/shocked about his death. Ask it to yourself. Use that question to educate yourself on healthy lifestyle choices that can help you avoid future illness. But don’t ask me.
"At least it was quick.” “At least it was slow.” “At least you’re young and can meet someone else.” At least you had a lifetime together.” At least you didn’t have kids to take care of.” “At least you have kids to focus on.”
If your sentence starts with "at least…” just stop (unless it’s “at least I showed up with tacos and beer”). Saying “at least” is an attempt to put a positive spin on a negative situation. Let’s just all agree that losing your spouse is fucking negative.
“My grandfather/sixth cousin/pet parakeet also died from cancer, so I get it.”
Sharing grief stories is great - it’s healing, it allows you to feel less alone, and relate over a shared loss. We use our own experiences with loss to try and connect. But don’t let those be the first words out of your mouth when you are trying to support someone who just lost their partner. Comparing grief isn’t productive. We are different people who lost different people and who process loss differently. None of us get what someone else is going through. And bringing up your loss, shifts the focus to your own loss, instead of the person needing immediate support. There will be time for that later (if you're an actual friend and not just a friend of a friend of a friend).
“He’s in a better place.”
Sure. Maybe there is a heaven with all you can drink margaritas where you spend your days flying through the sky and your nights sleeping on a pillow of clouds (Maybe I’m confusing heaven with Care-a-Lot). But in the midst of my grieving, I don’t care. I'm selfish and think there is no better place (not even heaven - or Care-a-Lot) than here with me (and I believe Brad would agree. Because I'm fucking awesome.). Plus this brings up an assumption on an entire set of beliefs that you don’t know we share.
“I can’t imagine…”
Yes you can. You absolutely can imagine. It’s actually really easy. You can do it right now. You just imagine the person you love most in the world walking out the door today and not coming back tonight. You just imagine going to sleep in your shared bed alone and then waking up alone over and over again. You just imagine opening up your closet and realizing he will never wear those shoes again. You just imagine spending hours sifting through old videos just to hear his laugh one more time. It’s not that you can’t imagine. It’s that you don’t want to imagine. It’s that it’s too hard to imagine. It's that you are uncomfortable imagining.
So what can you say if you just met someone whose spouse has died?
"I’m so sorry.”
Look them in the eyes, don’t squirm in discomfort, actually imagine what they must be feeling, and say, “I’m sorry.” It’s direct. It’s simple. It’s thoughtful.
“You must go on, I can’t go on, I’ll go on.”
For two years I’ve had this Samuel Beckett quote at the top of my notes. Each morning, as I began my writing for the day, I'd read It and feel the truth of the complexities of loving and losing and living in the aftermath. For two years it has been the quiet back-and-forth of my inner dialogue. For two years, I have had to verbally remind myself that, in spite of it all, I must go on.
Two years ago, I didn’t think I could.
Two years ago, my vocal, opinionated, extroverted husband whispered his final words. I held his hand and said, “I love you.” Brad looked me in the eyes, smiled, and replied with this one small word: “yes.” His body would hold on for another day, but that would be the final verbal exchange between the two of us.
When I think back to that day two years ago, I didn’t think I could go on. I didn’t think I could live through the pain of not having Brad in my life. I didn’t sleep. I sobbed on the floor for hours. I drank away my pain. I regularly thought to myself, “I can’t go on.”
But two years later, I have gone on.
I went on, not just because of my own strength and desire to live. But also because Brad deserved nothing less. I refused to waste my life when Brad’s was so unfairly cut short. I went on, in part, because of Brad's profound influence on me. Brad didn’t ever choose the easy path. He could have easily made more money, but chose to work in non-profits, serving his community. He could have lived in Boston or DC or Portland, but chose Detroit. He could have married any one of his many admirers who demanded less (hi ladies!), but he chose me. He could have talked his way through anything, but he chose to listen. He could have played it safe, but he chose risks. He chose courage. More than anything else, he chose a life of meaning.
Leading by example, Brad challenged me to be courageous. He emboldened me to ask the tough questions. He encouraged me to use my voice. He chased high expectations and big dreams. Witnessing someone reach for a life that substantial was infectious and it inspired me to reach further too.
Two years ago, Brad looked me in the eyes, smiled, and said, “yes.” That yes wasn’t just about loving me. It was about all the choices he had made - all the choices we had made in our life together.
And in the past two years, when I’d lay in my bed and cry and think “I can’t go on,” I inevitably think back to Brad's “yes” and I know: I will go on.
I’m part of a Facebook group called Hot Young Widows Club. You don’t have to be hot or young or even a woman to be part of the group. The only requirement is that your partner is dead. But the name sets the tone for the type of group: it’s full of attitude and sass and zero fucks. It’s the most supportive grief group I’ve found.
Earlier, a fellow hot, young widow posted about March being kidney cancer awareness month. I didn’t know this existed. Maybe I should have - because of my own diagnosis, I am aware that blood cancers have their own month and lymphoma has a special color cancer ribbon. It only makes sense that kidney cancer would get its own month and special color ribbon too (I looked it up - it’s orange). But I didn’t know. And because of that, my initial feeling was one of guilt. Am I a bad cancer widow for the total lack of awareness I have about kidney cancer awareness month? The disease that stole my love and my whole fucking future and I don’t know anything about it?
Should I be more aware?
But after the guilt subsided, anger set in. I may not be aware about kidney cancer awareness month, but I am certainly aware about kidney cancer. That I am fucking aware of.
I'm aware it’s a sneaky cancer that doesn’t let itself known until it’s too late. I'm aware that the “lucky” ones who discover it early, usually discover it on accident. I'm aware that for the rest of the people (the “unlucky” ones), it is so fucking aggressive and awful that right when you settle in to fight, the fight is over. I'm aware it has the ability to - in an instant - swoop in and steal the life of the person you love most in the world, taking your life along with it.
I'm aware that we were too busy fighting it to advocate for it. Too busy fighting for a future, any future, to worry about awareness and ribbons. And I'm aware that with late stage kidney cancer, chances are, it’s going to be a shorter fight than you want.
I am also aware that the people who are AWARE of cancer awareness month are the people still living. The fighters. The survivors.
But stage 4 kidney cancer doesn’t leave a lot of survivors. It leaves a lot of widows. That I am aware of too.
So what is the point of kidney cancer awareness month? What exactly are we trying to be aware of? What kidney cancer looks like? What it feels like? Usually nothing. It looks and feels like nothing. And it’s because of this lack of awareness in the body, that it is so often undetected until the cancer has metastasized and it’s too late.
I am aware.
How about what kidney cancer does? Should we be aware of that? Because I can tell you about that too.
I am aware that kidney cancer silently attacks your body. Every day, quietly wrecking havoc on your system. For years. So by the time you are aware, it’s too late. And then it quickly - so fucking quickly - destroys you. It will spread to all your organs. It will cause life threatening blood clots and strokes. It will eat away at your bones. It will take your energy. And your vision. And you ability to sleep. And your appetite. And your ability to move. And if you’ve made it this far, it will eventually fuck with your mind. And finally, when it’s taken everything else, it will take your heart and with it, your very last breath.
I am aware.
With stage 4 kidney cancer, I am aware there is no cure. No treatment that provides any real hope (although you’ll hear the story of the one guy who is 6 years in and doing well or the person who miraculously cured her stage 4 cancer and I am aware that you’ll grip and hold hope to these examples with every bone in your body). But in most cases it’s a fucked up disease that will drop a bomb on you and obliterate everything and everyone in its path.
I am aware.
That’s what kidney cancer fucking does. Thank you awareness month. I am perfectly aware.
And now that you’re also aware, now what?
Typically the purpose of cancer awareness month is to bring awareness to symptoms to look out for for early detection. For some cancers that’s a lump. For others it’s fevers and night sweats. These symptoms can be detected early and can often times be the difference in life and death. But what about late stage kidney cancer? What then? Be aware of the indiscernible, silent thing growing inside you? The mass that shows no symptoms and you will not physically feel until it’s metastasized and spread all over your body? Be aware of that?
There’s no early detection. There’s no early screening. Even the American Cancer Society says, “There are no recommended screening tests for kidney cancer in people who are not at increased risk. This is because no test has been shown to lower the overall risk of dying from kidney cancer.”
And because they can’t give you any concrete actions to make you aware, they recommend eating your fruits and veggies and getting sleep and working out and reducing stress and not smoking and all the other preventative shit we all know.
I am aware.
And it all feels like a bunch of bullshit.
Instead of a month of awareness, how about just be aware? Be aware of your life and live. Live so fucking hard. Chase passion and excitement and love and adventure. Be compassionate and kind. Take risks. Fail.
Live a life so full and so aware that when you are taking your final breaths, you aren’t thinking about all the things you should have done. Instead you are replaying all the moments you chose to fully live.
Live that life. Be aware of that.
Happy Kidney Cancer Awareness Month. I am aware.
6 months ago, my life - my happy, perfect life - changed forever. 6 months ago today, Brad and I walked into the Saint Joseph Mercy emergency room, hoping and expecting for an infection and instead getting a stage 4 cancer diagnosis.
It was a day filled with fear, anger, sorrow and pain, but also one of hope, love, and determination. It is a day I will remember for the rest of my life. The anxiety I felt as we squeezed into the small hospital bed, holding each other while we waited for results. The gut wrenching fear I felt as our friend and doctor, Josh - off duty for the night - walked in after midnight to deliver us the news. The numbness and shock I felt hearing “stage 4.” The compassion I felt being told by a trusted friend instead of the random on-call doctor. The unstoppable love I felt from Brad as he held me and let me cry in his arms, assuring me that we were going to be okay.
6 months later, I am not okay.
Three days before that day in October, Brad and I were blissfully unaware, on vacation in the Upper Peninsula. We were celebrating my 4 years of being in remission, wrongly believing that we had already gotten through the worst part of our lives. We spent hours talking about our future - and not just the near future, our whole future. We talked about retirement and the kind of life we wanted as we grew old together. We talked about our lifetime together.
My life is now divided into two completely separate lives. The life that I wanted - the life that I chose - and the life I was recently given. The life I want more than anything to fucking give back.
I would give anything to go back to 6 months and 1 day ago. To go back and have Brad’s pain be an infection. To go back and hold on for dear life to everything I had.
I just want to go back.
Instead I am sitting in Arizona, unintentionally and regretfully staying miles away from where I spent several months for my own cancer treatment, being reminded of what now feels like a faded memory of a trauma I experienced a lifetime ago. In a way it was.
I feel tired, I feel broken, I feel lost. I am at the point where I don’t really want to go forward, but what is there to go back to? If home is where your heart is, how do you go back to a home without your heart? I want to go back to before 6 months ago. Back to that life. My real life.
How do you move forward when all you want to do is go back?
Today my worst nightmare happened. We lost my love, my best friend, my heart, Bradford. He passed away in our bed, holding my hand, just like he wanted. I don’t think there is a person in this world that would disagree that we lost him far before his time. He had so much more to give in this life and was robbed of his full potential. But for the amount of time he did have with us, he lived more, loved more, and accomplished more than most do in 100 years. Brad affected the lives of everyone around him. Real connection was his top priority and I don’t think he fully realized how many people he truly reached - through his passion, drive, and search for deeper meaning.
Brad was the light of my life and always pushed me to be the best version of myself. He challenged me and questioned me. But most of all, he loved me. Fiercely. And Unequivocally. Our love was loud and obvious for the world to see. Our love was fearless.
Brad, the idea of living a life without you is more than unbearable. It’s impossible. You were my always. My forever. Already my life feels so quiet without you. I don’t know how to go on without you, how to be my best self without you by my side, but I will try. Because that’s what you wanted and that’s what you deserve. And I will figure out how to honor your life, every single day of mine. And I know I am not alone in that.
Love, I will miss everything about you. Every single day. I am so proud of the life you lived and the man you were - not just in the face of this terrible diagnosis - but every day I knew you.
You are my hero and no one lived their life more courageously than you. Sweet dreams my love - I love you more than the sun and the moon.
This post is copied from Brad's personal blog, The Road Taken.
Many may recall: on October 27, I started the surgery process with my arms raised; ready to fight. The surgery decision came briskly, just 2 weeks following my initial diagnosis on October 12.
At the time, I was told to anticipate 6 weeks of recovery, which would align well with the next phase of treatment: systemic immunotherapy to help eliminate, shrink, or stall my cancer.
We never could have anticipated what would follow.
Week after week, we were flooded with bad news: the cancer spread to my spine; fracturing a vertebrae; it spread to abdomen lymph nodes, and maybe my skull. The tumor in my liver had grown at a terrifying rate–4x it’s original size. Newer tumors popped up in my lungs and liver. I developed double vision due to a weakened cranial nerve and, to boot, two small hematomas on my brain. I’ve now lost over 50lbs.
All that disease progression took place in less than 6 weeks.
Before learning of the spread, we were given a real glimmer of hope on a “cure” treatment because my pathology report finally exhausted other Renal Cell Carcinoma types, putting my cells in the category of ‘clear cell’ Kidney cancer. This is, relatively speaking, a more common and better known type to treat.
Just a week later, my progression rate caused gasps among the tumor board that reviewed it–and it would drastically changed my treatment path.
Now, whether ‘clear cell’ or not, this pace of progression made the option of a known curable treatment, Interluekin 2 (IL2) at this stage virtually impossible because of my poor–and declining–physical condition.
This alone was a major blow: although IL2 gives 5 years cure to just 6-10% of its recipients; it is the only known treatment to provide that path. IL2 is also effective at achieving some other progression free goals for up to 40-50% of patients. But, IL2 is known as a brutal treatment itself; no picnic; requiring ICU like care and often leading to very challenging and long-term side effects. So, some saw it as a blessing in disguise for me not to potentially endure such a toxic and low chance of success.
Even still, if it were on the table, i would likely have taken the shot – there was a specific IL2 treatment trial in Dallas i found that seemed like a good fit based on the metastatic state of my first scans in October.
But, new information leads to new decisions.
I would add: every stone of 'alternative treatments’ is being concurrently researched, considered and evaluated. Cannabis oils; infrared saunas; dendritic vaccine therapies; stem cells; supplements; hyperthermia; Low dose chemo; tumor genomes; vitamin C IVs, Accupuncture, essential oils, fasting…you name it. I’ve asked anyone with suggestions to make them and be specific. And, as I’ve intended from the beginning, we’re continuously closing in on some hybridization of these strategies in concert with cutting edge medical treatments, comprehensive nutrition and cancer related supplemental supports.
I hasten to add: I’ve been told I’m on prayer lists all across the country. I’m aware of a continuous stream of loving thoughts, prayers and well wishes, And, with every text, note, FB like – it all adds up to a profound and sincere expressions of love that lifts me up everyday.
I know I’m not alone.
Further, friends brings books, food, games, gags. We’ve raised thousands of dollars over night–multiple times. It’s a truly awesome and incredible array of love. These acts of kindness and love reveal to me an enormous degree of our collective spirit: showcasing such beautiful human decency and undeniable agency is inspiring.
And, I’m doubling down with my daily (yet feeble) attempts to practice mindfulness, meditate, eat gluten free, dairy free, sugar free. To be vulnerable – brutally honest even – about what we’re up against without giving up hope.
So, I’m asking everyone for an ounce more: please move confidently with us as we sift through the days and weeks ahead. It’s a tough sell: confidence in this approach given how the disease has spread so far: I know I’ve tried to sell it before, but didn’t respond quickly enough to the horrifying pain I was in the week of Thanksgiving, Then, I was then holding on fast to my potential cure. Hoping that I could just turn the corner on my own. I was wrong.
This it’s my most important marker in the next 4-12 weeks. If we can do it, it will allow this avalanche of love and the 'complete treatment’ approach to get the real shot it deserves at seizing the day. And–I truly believe–then a path to adding years on my horizon instead of months.
On Saturday, November 26, I was admitted to the hospital for a whole week.
After completing 2.5 hrs of MRIs straight on my fractured back, drenched in sweat, we set a path for the near term: largely to avoid risk of spinal cord injury. With the St. Joe’s team, we negotiated to accelerate 15 doses worth of radiation in 5 days so I could as swiftly as possible commence the systemic immunotherapy I desperately need to halt this progression.
But, I also have to own the reality, and face up to the fact that my time here may be viciously short. All of this has come so fast and in dizzying degrees of urgency, I finally podcasted openly and directly about my mortality. Up until that point, I’d been trying to compartmentalize all of these complications from the cancer itself – trying, desperately, to outflank the disease and the threat of death.
If there was one ounce then of good news, it was this: my mission got crystal clear: get in line for systemic therapy that will reduce the rate of progression. Then, continue to do everything within my humble power to be healthy, be connected, and be alive through this process so I can fight for the next stage all the way through.
Unbelievably, just weeks before all this transpired in my case, a new study provided unusual clarity: One of RCCs front line therapy, called Cabozantinib, saw dramatically better results than its peers at reducing rapid disease progression.
For once, I felt this was unquestionably my best path right now. My doctors rushed an order–there are maybe 200 patients in the country on this pill–which costs an astonishing $100,000 per month. But, hey, I’m worth it! And, this is my best shot.
Everyone out there: this is heavy and wildly intense. But you see me in this next photo: arms raised, ready to fight.
This photo was taken December 8, 2016: It was my first dose of Cabozantinib, which arrived by mail the afternoon before. We have a 30 day supply.
It will be arduous: most of all in the uncertainty of whether its working until our next scans in 4-6 weeks. And, desperately, I’m hoping to be as boring as possible during this time: no emergency visits. Side effects to a minimum.
So far, so good. My pain management is better and the treatment isn’t having any major effects. I’ve had three similar days – a level of predictability I’ve not had in months.
So, day zero was Thursday, December 8 at 7am.
Despite all the ups and downs to date, we must measure all future disease progression from my state now; not from October. It’s a new beginning; a steeper climb, but still filled with hope and promise.
Day zero: I started the systemic treatment yesterday. Day 1, I’m up. I’m working. I’m turning the corner.
Now, we all have to see how it proceeds. Your patience and support is vital to me more than ever. I’m confident this is the right thing and am so grateful for everyone’s faith, support and encouragement.
Stay with us. Let’s fight.
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.