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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.

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.

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.

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. 

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.