Cassie’s Metastatic Breast Cancer has started to progress. We always knew this day would come because there is no stopping this cancer – all you can do is slow it down. And, slow it down we did for the past six years for which we both feel incredibly grateful. 

Yet here we are at what kind of feels like a return to the beginning. New drugs. New uncertainty. A new clock that feels like it is ticking louder. We are both bummed of course and more than a little anxious. 

Cassie often listens to the Calm app (highly recommended) and the other day it sent her a message that said: “You are not starting from scratch, you are starting from experience.” That really resonated with us because we do know so much more now than we did when Cassie was first diagnosed. For instance, we now know the difference between being scared and living in fear. Being scared is a normal and natural reaction to late stage cancer progression (and too many other things too, like the possibility of Trump winning again). But we can allow ourselves to be scared and also choose to not let the fear control us – to not “live” in it 24 hours a day and that is exactly what we are both trying to choose. 

To live in love not fear. To live in the present moment, not the future. And, most of all, to live as fully as we can each and every day that we still have together.

Yesterday was Cassie’s sixth cancerversary.

Dan and his brother were having lunch recently and talking about this impending milestone. Jesse asked: “ Do you say HAPPY Cancerversary?” To which Dan responded………”Ummmmmmm, that’s a good question, I don’t THINK so but I’m actually not sure and have to ask.”

When asked Cassie unequivocally and simply said “nope.”

You see, for us, nothing about Metastatic Breast Cancer, is particularly a cause for happiness. And while it’s true that we are incredibly relieved to see this date for the sixth time, it’s always a day of mixed emotions. Gratitude, grief, relief, sadness, fatigue, surprise, trepidation, fear, thankfulness and above all else, a continued sense of being overwhelmed and a continued appreciation for life’s tenuous nature.

So if you happen to know someone experiencing a cancerversary, perhaps note it. Tell them you imagine that it must be a strange day and offer them a hug or a smile or a kind word. But also know that it may not really be a cause for celebration — for us at least it’s not, though it may well be for others. It’s complicated and hard and beautiful all at the same time. It beats the hell out of the alternative for sure but it also signifies the start of another year of living with extreme uncertainty. Another year of ups and downs. Of scans and waiting. Another year of trying to survive and live and love as fully as we can. Cancerversaries are like everything else with MBC – surreal.

Thanks for being with us as we continue to navigate this complicated journey.

A few weeks ago Cassie got really sick. We will spare you the gory details of what was probably a bad flu but suffice it to say, it was as sick as Cassie has ever felt or as Dan has ever seen her. Not good. 

That first night we were probably 30 minutes away from calling 911 for an ambulance and an ER run as Cassie was at risk of being dehydrated and too weak to walk. We avoided having to make that call but it was a hard night. When Dan – all masked up (maybe something good actually did come out of Covid as we had a LOT of masks laying around) – put Cassie to bed he was in “deal” mode. Fifteen minutes later though his mind began to wander. “Is this what the end will feel like,” he started to ponder. He immediately banished those thoughts from his head in favor of trying to stay present. Turns out though the present was equally, if not more, scary. Dan realized that we both knew of women with MBC who had died from an infection that their immune systems were too weakened to fend off, and it was that thought that caused him genuine terror.

What if he had just said goodnight to Cassie for the last time? What if she wasn’t alive in the morning? What if this was it? He thought about going in to check on her but didn’t want to wake her up and was pretty sure that what she would have said to him was: “If this is it, then this is it and you are going to need your rest tomorrow so try and get some sleep.” So that’s what he did (and what Cassie later confirmed was exactly what she would have said so at least he got that one right. 🙂). He slept – kind of – and was incredibly relieved when Cassie called him in the guest room at 5:00 a.m. for some water and another blanket. Whew.

A couple of days later when Dan shared all this he said that he had thought there might be like a 20% chance that Cassie could have died that night. To which she responded: “Oh is that all? I thought it was a lot higher than that – I was pretty worried.” So we had both been thinking the same things. The same scary and unsettling but very real thoughts. 

Cassie is “healthy” again and thankfully it was just a bad flu. This whole experience though has made it clear to us that we are living our lives on “thin ice.” Now, on the upside, we have gotten a lot better at living this way. We know how to be more careful, slow down, ask for help, change plans, and so on. We can see the ice, recognize it and are more confident navigating it. Often we can even fool ourselves into thinking that our foundation is thicker and stronger than it actually is, and it might appear that way to our friends and family as well. 

However, absolutely none of this changes the fact that, thanks to MBC, the ice upon which our lives currently rest is exceptionally thin and that we could unexpectedly fall through at any time. We have known that too of course – intellectually – but this recent run in with the flu  was the most vivid example to date of the thin ice upon which our lives rest. It’s sobering, disorienting, and kind of scary but it is also a good reminder of the importance of living and loving as fully as we can every day. It’s also true that while there is nothing that we can do about the ice itself, we can continually get better at skating on it and that’s exactly what we are going to do!

Last night was movie night at the Cramer’s and we watched American Symphony which is a remarkable documentary of the extraordinary musician and composer Jon Batiste. Seriously, run, don’t walk to stream it as soon as you can! It tells the story of Batiste’s efforts to compose a truly authentic American symphony, one that combines the many different genres that make up the kaleidoscope of music in this country. More than just that though, the movie chronicles the love between Jon and his life partner Suleika Jaouad as her blood cancer returns after a ten year remission. 

For us this documentary captured the essence of living and loving with cancer in your life. It showed the complexity of trying to balance your day to day life and dreams with the reality of a horrible disease. The heart wrenching beauty of navigating something so big and so hard together as a couple. And the way sadness and joy and gratitude and grief can live side by side. The movie is about the making of a musical symphony but for us it spoke to the symphony that is life — full of different notes, emotions and feelings. Here’s to embracing the whole of life in the year ahead.

Happy New Year.

Love Cassie and Dan

In the summer of 2018, a few weeks after Cassie was diagnosed, Dan met a guy named Dustin for lunch at the Highland Grill. Dustin’s wife also had Metastatic Breast Cancer and they were already several years into their MBC journey. 

Dustin’s story and suggestions were the very first things that helped Dan who was still reeling and feeling completely disoriented. Having someone who was walking this same path and was so willing to share their personal experiences made Dan cry but they were tears of gratitude. Dustin quickly became a trusted confidante and good friend. It’s not remotely an overstatement to say that as Dan’s caregiver mentor, Dustin improved both of our lives at a time of immense crisis. 

Flash forward a few weeks to when Dan attended his first “Caregiver Klatch.” He didn’t know what to expect and was actually pretty worried that he was walking into a sad-sack support group that was only going to make him feel worse. He couldn’t have been more wrong. Dan quickly discovered that the Caregiver Klatches are this wonderful blend of empathy and concrete insights alongside a heavy dose of hospitality – think free beer, wine, and food at every gathering. 

Caregiver mentors and Caregiver Klatches.  These things didn’t just appear out of the blue; they are both projects of Jack’s Caregiver Coalition (www.jackscaregiverco.org) We have mentioned Jack’s in previous blog posts but only briefly and only as part of our periodic gratitude lists. So today we wanted to take just a moment to share more about this incredible organization that has done so much to help so many caregivers – especially Dan.

Supporting caregivers has so many positive ripple effects. It helps strengthen and sustain the caregiver of course AND it also directly benefits the person receiving care. That’s why we are both writing this particular post and not just Dan. We have both learned so much from other caregivers including: how to balance grief with joy, the importance of self-care, how to better navigate the holidays and other special events with cancer, ways to slow down, how to ask for help, and so much more.

Jack’s has helped us, so it’s important to us to help Jack’s! It’s a small (three staff) nonprofit organization. What it has already accomplished with limited resources is simply astounding and it has big dreams of supporting more caregivers in more places. This is so needed and we hope anyone who reads this blog post might help by contributing to Jack’s today. You can contribute through this link: https://www.givemn.org/story/Givetotheklatch

We want to acknowledge that many of our friends and family members have already contributed to Jack’s over these past five years. To all of you, please accept our immense thanks! And, because we are a organizer and a fundraiser, we are asking for your continued support and hope you might consider another gift and help us spread the word today.  

Please know that this is a good organization doing crucially important work. We wouldn’t ask otherwise. Jack’s changed Dan’s life by providing support and safe space for him to grieve and learn. That in turn has improved both of our lives and our relationship. As Cassie often says “Caregivers need support too.” Jack’s exists to provide that support and we hope you will support Jack’s today and into the future. Here again is the link to give: https://www.givemn.org/story/Givetotheklatch

In solidarity with all the caregivers out there we say thank you. 

Dan and Cassie

About 15 years ago we watched the movie Couples Retreat. Don’t be tempted – it was a REALLY bad film even though it starred Kristen Bell, Vince Vaughn, Jason Bateman and Charlotte from Sex in the City, all of whom we like. One good thing came from this bad film though which was a running joke. Often, when we would have a minor argument or fight, one of us would say: “It’s time for couples retreat” and that usually got us laughing and moving on from our skirmish. 

That backstory is relevant because a few months ago (soon after her Cancerversary) Cassie suggested that we go on couples retreat. At first Dan was confused. Was there a fight he had missed? Something he’d done to piss off Cassie? What was prompting her to use this long standing shorthand? Turns out though that she was serious. Cassie was actually suggesting that we go on couples retreat to sort through our complex feelings surrounding hitting the five year mark of living with Metastatic Breast Cancer. 

Dan immediately said yes as visions of hanging out with other couples at some nice spa/resort and going through facilitated exercises and mindfulness practices raced through his head. Two days later though he received an email from Cassie. It was titled “Couple’s Retreat” and included a multi-page retreat agenda she had developed along with a note that said: “This looks fun – I think we should do it.” You see, what Cassie had in mind was our very own retreat that would take place at our Winona condo and that we would organize and do together.  A Couple’s Retreat not couples retreat! With this clarity revealed and the great draft agenda in hand, Dan immediately said yes – again.

So that’s what we did in mid-September. A three day, self-organized, Couple’s Retreat and it was amazing. We had sessions on our aspirations and values. We did yoga. We practiced stillness and walking meditations. We met with our Enneagram Coach (the remarkable Brigid McCormack) and learned about how to support one another better. We discussed what we had learned over these past five years and what we wanted the next couple to look and feel like. We scribbled on poster-board and went antique shopping to find things that symbolized this next phase for both of us. We cooked together and napped together. We laughed a lot and cried some. Wine was consumed and laughter abounded. Most of all, we kept looking at each other and saying: “Can you believe we are actually doing this?” 

We covered a lot of ground but some very valuable and concrete take-aways emerged. Those include: 

• A couple’s value statement that we can use to ground and orient ourselves.
• A set of practices that we can adopt (both individually and together) to help us stay anchored in our values.
• A “Vision Board” of things we might do over the next couple of years.
• Greater clarity about how we could structure our time; and 
• Ways we can both help each other slow down and find greater harmony and balance within and across our weeks.

It was also interesting to observe what didn’t emerge from the retreat. We felt no need to label this next phase of our MBC journey. Instead we just decided to be in it and be in it together. We are thinking about the next two years hoping that we get that time but knowing we can adjust if something changes. We also decided that right now we don’t want to give cancer any more energy than we have to. Some days that might be a lot but hopefully, on others, not so much. 

Coming out of our time in Winona we are leaning into compassion and kindness – for ourselves and for each other. We are feeling grateful that we had the time together, that we took it seriously and that we felt so aligned. Mostly though we are just so glad that our Couple’s Retreat was so much better than Vince Vaughn and Kristen Bell’s Couples Retreat.

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.

*******

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.