Today I celebrate my sixth birthday since Cassie’s Metastatic Breast Cancer diagnosis. On previous post-MBC birthdays, I’ve written about how all celebrations feel a little strange and different to us. That’s still the case, but right now Cassie and I are trying to avoid giving cancer any more energy than we absolutely have to. So, with that in mind, I thought I’d simply share some things that I am especially grateful for on this birthday.

• Cassie. Cassie’s being alive. Cassie’s love. Cassie’s courage. Cassie’s laughter. The twinkle in Cassie’s blue eyes when I drive her crazy. Everything Cassie. Full stop.
• My friends
• Nieces and nephews who make me laugh even though they don’t laugh at my jokes
• In-laws who are rocks for both Cassie and me
• My brothers who inspire me
• Couples Retreat (more on that soon)
• Our new home and neighborhood
• Only Murder’s in the Building Season III
• Stillness
• Morning Diet Coke(s)
• My New Ancestors group
• Delicious food.
• Jack Smith, Letitia James and Fani Willis
• Magic
• The latest Red Rising novel
• Ken Jennings as solo host of Jeopardy
• The Bears for giving me my Sunday afternoons back
• All Saints and Hazel’s Northeast 
• Daily check-ins with Seth
• The Enneagram
• Good wine
• Doc the dog
• Jack’s Caregiver Coalition
• Coaching and having an amazing coach
• Mine and Cassie’s enduring love. 25 years and still newlyweds!

Yes, things are still hard. And yes I am still scared. But I am learning and re-learning all the time that gratitude can sit aside my grief and that there are so many things that I am grateful for every day. Thanks to all of you who make my life better. 

July 13, 2023

In May I renewed my driver’s license. I remember, five years ago following my MBC diagnosis, this being high on the list of things I was pretty sure that I’d never do again. Since 75% of women diagnosed with Metastatic Breast Cancer don’t live beyond five years, I was fairly certain that I’d die before needing a new driver’s license. 

But here I am, marking my five year “Cancerversary” new driver’s license and all. I am, of course, grateful and happy to have the extra time. Simultaneously though, I find myself a bit baffled about what it looks like to move beyond five years. There is mounting evidence that women with MBC are living longer and that new treatments are being developed at a more rapid pace. While I might not live to see a cure for MBC, there is hope that the disease will be treated as more of a chronic illness instead of a terminal one. As doctors and other women living with MBC have often shared with me: “The longer you live, the longer you’ll live.”

For Dan and me, though, questions still remain: How do we channel the energy we’ve spent getting ready to die into focusing even more on living fully? Can we move beyond thinking about living in three month chunks even as scans continue every three months? When faced with death, and then living beyond what was expected, how do you move forward? What does it take to live indefinitely on meds that often make you feel really crummy and fatigued? What’s our mind frame for this next stage? What even is this next stage? 

So, we are taking this five year mark as a time of reflection (again) and renewal. Renewing our commitment to living each day with joy, intention, love and gratitude. To finding beauty in the small moments. To laughing a lot. To enjoying each other, our family and our friends. To new adventures. To serving our opportunities and not just our fears. 

We are so grateful for all of the love and support we have received over these past five years. It’s not remotely an overstatement to say that we are only at a more grounded and hopeful space thanks to all of the care we have received from so many. And here’s the thing – we are going to keep needing that love and our community even past this five year mark. That’s hard for us to say out loud because we are both pretty bad at asking for help. But, we know that living with an incurable illness and treatment side effects is a grind. And we know that MBC is a sneaky disease. And we know that you can go years with stable scans and then WHAM. So while making it past this milestone is incredibly encouraging, and while we are more hopeful than at any point since July 13, 2018, we also remain fearful and realistic and uncertain, and all gloriously mixed up. 

Here’s to five years. And to whatever is next. And to living and loving fully every day.

We moved.

To Minneapolis. 

People outside of Minnesota may not understand how big a deal that is. We uprooted ourselves after 33 years in St. Paul, and moved to the other Twin City and it got many a head a shaking. Not ours though, we couldn’t be more excited. 

Over the last five weeks, we looked at a lot of condos, found a new home, made an offer, negotiated, inspected, closed, packed, moved, unpacked and got our old house ready to go on the market. We are exhausted just writing that sentence. And grateful too for our amazing friends and realtors David and Wren Wells (yes that’s a blatant attempt at promotion/referral🙂).

This is a new adventure and it was primarily sparked by Cassie approaching her 5th year of living with Metastatic Breast Cancer. As we have noted before, 75+% of women diagnosed with MBC don’t make it five years so Cassie’s approaching that point is a BIG deal – one we were pretty sure we would never see when she was first diagnosed. This impending milestone got us thinking more about living with terminal cancer rather than focusing on dying from it. That got us reflecting on how and where we want to spend our remaining time together. And the answer, for both of us, was not in a big house, with a big yard, and lots of stairs and even more projects. It was time to move. 

Since 2018 we have thought a lot about Cassie’s likely death. We have tried to live fully at the same time but we were both pretty consumed with the idea of Cassie dying at our wonderful St. Paul home surrounded by family and friends. Now though, we are consumed with a new home and neighborhood. We of course know that Cassie’s MBC will likely progress at some point and there is still no cure. We will still get anxious for every scan and worry about every new ache or pain. But we are also reveling in so much newness. New home. New energy. New views. New places to walk and eat and explore. We are laughing and saying “can you believe we just did that and that we live here now?” 

Most of all though, we are excited for this new adventure and for getting to do it together something we haven’t dared to imagine – until now.

My friend Vic Rosenthal died of cancer this week. He was an amazing organizer, advocate and friend. I was honored that his family asked me to give one of the eulogies at his funeral. Vic wanted me to talk about living with cancer and dying and death. My words are below. May his memory be a blessing.

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Vic and I forged our friendship in a three-hour traffic jam.

That’s not when we met of course. We had known each other a long time, meeting through Paul Wellstone’s campaigns and getting to know each other through organizing and JCA. Vic recruited me to the JCA Board at a point in my life when I had sworn off nonprofit boards. I am going to lean into understatement here and say: “Good God was that man persuasive.” And, if I may respectfully add, a complete pain in the ass until he got what he wanted.

Anyway, back to that traffic jam. Vic and I had begun to bond over baseball. Now that wasn’t entirely a natural fit because Vic was a Yankee’s fan and that was almost more than I could bear. But we found common ground in baseball’s history, connection to our childhoods, and the sights and sounds of a ballpark. So, one summer night we were driving home from a Twin’s game only to discover that every highway in the Cities had been shut down for some reason. Seriously, 94, 35, 55, 62, University, Lake Street – all closed. So, we sat in traffic. And we talked. And talked. And talked.

I’ll never forget that conversation. We shared our fears and our anxieties. We talked reparations and restaurants. Justice and television shows. Depression and politics – that was early in the Trump era — so depression and politics went together really well.  It took us close to three hours to get back to St. Paul and when we finally got there, we were tired, pissed and frustrated. But as time passed, we both looked back on that never-ending drive with real fondness. Me, I look back on it as the moment when Vic first started modeling male vulnerability for me and first showed me what it means for a white man to fully commit to racial justice and equity.

From then on what Vic and I mostly did together was walk and talk. Even before Covid, we would meet for long walks around St. Paul and in recent years, the things we talked about became even more personal. We talked sickness, cancer, dying and death…And living too.

We talked all the time about living with cancer and what that means and takes. A few years ago, my wife Cassie was diagnosed with Stage IV Metastatic Breast Cancer. It’s a treatable disease but not curable. It’s considered a terminal diagnosis and most people die within five years. Cassie’s doing ok for now but after she and Vic were both diagnosed, cancer became another bond that connected the two of us.

So, Vic and I would talk often about cancer. And loneliness. And gratitude. And hope.

A cancer diagnosis is a lonely thing because most people fortunately don’t have cancer. But Vic and I talked about how it’s made even lonelier because, as a society, we are bad at talking about sickness and dying and death. It scares us, so we avoid it. But by avoiding it we add to the loneliness of the people who are going through it and the loneliness of their caregivers.

Vic and I would also talk about gratitude and how to practice gratitude even when facing cancer. This seemed unnatural at first – I mean you’re certainly not grateful for being sick. What you are is scared and angry and sad and fearful and lost. But what we came to realize together is that the amount of anger and fear and sadness that we were both experiencing in different ways was directly proportional to the amount of love in our lives. Love for our spouses, families and friends. And it’s this love that we could always be grateful for.

We talked too about hope. That while, big, long-term hope might be hard to find when facing cancer, you can still practice hope every day.  You can “hope” for as good a today as possible. You can “hope” to be able to live fully today. You can “hope” to love fully today. You can “hope” to keep your heart open. You can “hope” to find it in yourself to connect with others. And so on. And what Vic and I both found was that if you can practice these little concrete hopes then you can actually find hope.

When cancer is in your life you develop a strange sense of humor. In that vein, Vic and I often observed that when you told people about a cancer diagnosis a good number of them would surprisingly respond by saying: “Well any of us could get hit by a bus tomorrow.”

A couple of reflections on this. First, don’t say that to people with cancer – or any serious illness. Just don’t.

Second, Vic and I realized that what these people were probably getting at, is that life can be short and that nobody is ever guaranteed any specific amount of time. They were trying to empathize with us and speak to a different way of living. Here’s the thing though – we don’t live our lives as if we might get hit by a bus tomorrow or get diagnosed with cancer tomorrow. Most of us tend to live our lives like we are guaranteed a lot of tomorrow’s. Putting things off. Waiting. Deferring.

Vic and I probably talked about this more than anything else these past years.  Why do we wait until a cancer diagnosis or some other life-changing event to think more about living fully? What would it look like to live more fully – not irresponsibly – but more fully, all of the time?  Why is living fully so hard? How much of this is about white supremacy culture and how we dismantle it? What does it take to live fully and love fully?    We are all going to die – it’s the one absolute guarantee in life. So, what if we talked about dying more and hid from it less?  What if we lived fully while preparing to die?

I’m going to miss these conversations with Vic. The last time we got together in person we discussed whether he had developed a death plan. I might have been better off avoiding that topic because that could be how I wound up here today.

But the thing is, we got to a point in our relationship that thanks to cancer — not because of cancer — but thanks to cancer — we could talk about any of this.  And, as a couple of organizers, we wanted to encourage others to have these same conversations.

Living. Loving. Dying. In health and in sickness.

I think the reason Vic asked me to stand up here and talk about these things today is because he wants us to keep thinking about them, keep talking about them. Let’s honor his wishes. His memory. Let’s live fully. Let’s prepare to die. And let’s talk about it.

I love you Vic.

Happy New Year.

There is actually considerable online debate about how late into the year you can appropriately send New Year’s greetings. Of course, the same could probably be said for any topic that is debated online so whatever. Some etiquette experts say it’s one week or eight days. Others claim there is actually no expiration date on greeting, while yet another group of experts claim that an entire month is acceptable. That’s the school of thought to which we subscribe so again – Happy New Year. 

Instead of adopting resolutions we’ve each identified words that hold special resonance for us as we start 2023. Cassie’s are “endurance” and “confidence.” Dan is leaning into “magic,” “stillness,” and “difference.” Now we are not entirely sure what any of the words mean to us exactly and that’s part of the fun. These words just spoke to us and feel right to explore as we start a new journey around the sun four and a half years after Cassie’s Metastatic Breast Cancer diagnosis.

Endurance feels like it is both physical and emotional. Confidence too for that matter. A woman Cassie follows on Instagram recently said “One of the biggest daily challenges is balancing an innate sense of optimism with the reality of what MBC is.” We can relate and confidence and endurance seem like they can both help with this delicate balancing act. 

Magic. Wonder. Awe. Dan sees these as different ways of saying the same thing and he has found himself wondering how adults can reclaim more of life’s magic and mystery that comes so easily when we are younger. Stillness may help and may also open up new possibilities for living and being. Difference feels like being open to new decisions and experiences. 

We don’t know where these words will take us or how they will relate to our relationship with Cassie’s cancer. We do know that we can’t wait to find out how they will show up in our lives both as individual words for each of us and collective words for us as a couple – magic confidence maybe? Different endurance?  Who knows but let’s bring on 2023. 

Ten years ago, when I turned 45 I climbed Mt. Kilimanjaro. It was one of the best and most challenging things I’ve ever done and it helped broaden my perspective – both literally and figuratively. 

I’ve been thinking about that climb a lot as my 55th birthday approached this year. Perhaps the biggest thing I took from the experience was contemplating what are the real “mountains” in my life and what are the things that I turn into mountains? The things that seem big, hard and consequential but are really just normal life challenges. For me, for a LONG time, I turned my work into a mountain. It’s not that it wasn’t important or stressful (it was) but I elevated it in magnitude, always pushing myself to scale higher, do more, achieve more, earn more. I thought if I just pushed a little harder things would get easier or we could have greater impact through our work. I turned work (and a number of other things) into a mountain but it wasn’t.

Kilimanjaro is a mountain. And Cassie’s Metastatic Breast Cancer is a mountain. 

MBC taxes me and us every day. We are constantly having to adjust our approach and change directions. But what really makes it a mountain in our lives is that there is no peak – nothing to reach. We just have to keep climbing. Day after day, week after week and hopefully, if we are lucky, year after year. It’s the hardest and steepest journey either of us has ever faced. 

I know better now that when I make mountains out of things that aren’t, I risk minimizing the real mountains when they appear. I also now know that the key to climbing a mountain – real or metaphysical – is slowing down, asking for help and putting on my proverbial backpack each day and doing my best to manage the weight even if I have to often stop and rest. 

On this birthday, I am grateful to have learned to focus my energy on the real mountains in life. And, while I hate having to climb this particular mountain, I know that I am not alone. I am grateful for that too.     

I just recovered from Covid. Topline: Not fun – avoid if you can.

We had avoided it for almost two and a half years but we both finally caught it, or it caught us –  whatever. I was patient zero in our household and we created a “Covid Commune” with our dear friend Robert who I also managed to infect (though to be fair he chose to eat off my plate at a wedding, but to be really fair I have been eating off his plates for thirty plus years so I guess it was kind of payback, but who was paying back whom as he then got sick? Anyway I greatly digress).

Cassie and I both had many of the typical symptoms – aches, fever, sore throat, and fatigue, oh the fatigue. Thanks to Paxlavid Cassie recovered pretty quickly but for me the fatigue held on tight. It is only after more than a month that I feel like my energy is starting to return.

That got me thinking about the difference between being tired and being fatigued. Maybe that difference is obvious to everyone else but it somehow wasn’t to me. When you are tired you can get some or a lot of sleep and that usually helps. My Covid fatigue on the other hand just wouldn’t go away no matter how much I rested or slept and it was way more than being tired. I felt heavy, like my arms and legs didn’t want to respond. And lethargic – all of the time. I also experienced the fatigue in my whole body and it got more intense throughout the day. It sucked and I am a pretty big baby when it comes to being sick so I complained a lot.

That is until it struck me: Cassie lives like this every day of her life and has since she was diagnosed with Metastatic Breast Cancer and started treatment. But for her it’s even harder because it’s likely never going to go away or get better. In fact, if anything, her fatigue will only get progressively worse. So if you’ve had Covid (or some other type of temporary illness-related fatigue) try to imagine what it would be like if it never went away and you had to live like that indefinitely. I just experienced this sort of real fatigue for the first time and even so it’s still hard for me to imagine life like that. 

I am constantly blown away by Cassie’s courage and perseverance in the face of her MBC and all the adversity it brings. As she sometimes says to me “I make this shit look easy but it’s not.” Now, having experienced just a taste of her life and the fatigue she has to manage every single day, my sense of empathy has increased dramatically. What she and others with MBC are doing is the furthest thing from easy – it’s brutally hard. Over and over again, in the face of crushing fatigue (and knowing it’s never going to get better) she chooses to search for joy and laughter and reject despair. Now to be fair, sometimes she chooses despair for a day or so, but those are the exceptions not the rule. She doesn’t let the fatigue define her life even though living with the fatigue is amongst the heaviest of lifts. 

Cassie has often drawn a distinction for me between feeling tired and feeling “cancer tired.” As much as I have tried to understand what she was saying, it wasn’t clear to me. Until now. Cancer tired = fatigue and fatigue = a hard way to live.

Cassie was diagnosed with Metastatic Breast Cancer four years ago today. 

For us this “cancerversary” begs the question: how can things be so bad and so good at the same time? Living with Metastatic Breast Cancer for the past four years has been the biggest challenge of our lives. Fear, loss, anguish, discomfort, loneliness and sadness is with us, to varying degrees, every day. But, so are joy, gratitude, love, laughter and adventure.

During our time in northern California this past spring our days were filled with sunshine, long walks, visits from friends, dinners out and LOTS of good wine. We often looked at each during a visit to a particular beautiful winery or across the table at some wonderful restaurant and said – “Can you believe this is our life! How fortunate we are.” And, we really meant it. 

Here’s the thing though. We often say the exact same thing on the days when Cassie has almost no energy, or when we are overwhelmed to the point of almost not being able to cope, or when we desperately miss the cadence that used to accompany our purpose-driven jobs, or when we are feeling lonely because our world feels so small and so focused on cancer. “Can you believe this is our life?”

Living with a foot in two worlds – one of pain and sorrow and the other of gratitude and love – takes some navigating. How can we honor the good times without losing sight of the challenges we face? Or, how can we be in pain but still remember all for which we’re grateful?

Of course, two things can be true at once. You can love your partner and still be annoyed at them. You can think your dog is the cutest thing ever even as it digs up your garden. You can care deeply about the events of the world and need to take a timeout from reading the news. You get the drift.

Balancing those emotions and making space for both the good and bad is something we are getting better at. Naming hard times and good times and being okay with going back and forth (sometimes within the same day if not the same hour) takes some agility. But, with each passing year we get a little bit better at it.

Here’s to the good times and to the not so good times – as long as we are in them both together. 

Since Cassie’s diagnosis, we have frequently used the word “lost” to describe our situation. We’ve both felt lost within our own lives. We’ve been disoriented, unmoored and confused. And we’ve felt really disconnected from the pace, cadence and intensity of activities and interactions that marked our lives pre-Metastatic Breast Cancer. 

This sense of being lost has been greatly exacerbated over the past years by Covid and by the pretty sudden and dramatic changes we’ve both made professionally. Cassie has stopped working altogether and Dan has cut his work back by around 90%. While we are both extremely grateful (and recognize how privileged we are) to be working less, and spending more time together, it’s yet another way that our lives have been upended and that we have felt lost.

Sometime last year, Cassie had a challenging but clarifying conversation with her oncologist about why she often feels so bad even though the cancer is stable. The doctor succinctly explained that it’s both because she has late-stage cancer and because she has been on toxic meds for three-plus years. The good news: The meds are working. The bad news: They regularly make Cassie feel like crap. That’s life with MBC. Full stop. 

Previously a conversation like this would have sent us reeling, spinning and questioning. “What do you mean there’s nothing we can do to make Cassie feel better — how can that be? Isn’t there something we can try?” This time though, we didn’t go into a tailspin because we knew what we had to do. Slow down. Be even more intentional about our time. Ask for help. Lean into things that bring us joy. 

That’s when we came to the realization that we weren’t lost any more. We might not like the place where we find ourselves, but we recognize it and understand better what it means to be here, in this place, with this disease. It can still be pretty disorienting at times since so much is so different for both of us, but it’s no longer unknown. We’ve discovered some sense of footing.

At the same time, we also came to realize (with some help from Dan’s new therapist) that while we might not be lost we are still feeling immense loss. We miss the life we used to have pre-cancer, the things we used to do when Cassie had more energy and the ways we interacted with the broader world. As sad as this all can be, we are coming to realize that we need to allow ourselves to grieve these losses. Let ourselves feel the pain, experience all the seasons as our lives continue to change and not push this form of “living grief” away. Ironically, not feeling lost has actually made it easier for us to access, understand and grieve these losses. That includes our relationship with work that we both found meaningful and the loss of a pace of life that we both loved. Loss but not lost. It’s just one letter’s worth of difference but it’s provided us with a whole lot of perspective.

This is a gratitude post.

We recently returned to the Napa Valley for an extended stay. The last time we were here, exactly two years ago, the world shut down because of Covid. It impacted every aspect of our time away but in the larger scheme of things we weren’t really impacted at all compared to so many others. We were lucky. We didn’t get Covid then and we haven’t since (knock on wood).

So it almost feels like providence that when we arrived at our rental home a car with this license plate was parked right outside.

We pointed at it, chuckled out loud and kept walking. But we also said to ourselves: “Yes, masks!” Not in a partisan or political way. Not to make a point or judge anyone. Not even because we are still wearing them all the time, which we are not as the pandemic becomes more endemic — though we are still wearing them more than most.

For us we just feel immense gratitude for everyone who donned a mask these past two years because they helped protect people like Cassie who are severely immuno-compromised. It’s hard to explain how scary it’s been navigating the pandemic in this risky position.  So if you wore a mask we just wanted to say thank you. It’s in large part because of you that we haven’t gotten sick and that we can return here, to our happy place, to spend some time together that is now less impacted by Covid. We are beyond grateful.