We recently learned that Cassie’s Metastatic Breast Cancer is progressing. 

It’s been interesting for us to observe our individual reactions to this sad but not unexpected news.  On the one hand Dan feels like: “Here we go AGAIN.” Starting over with new drugs, again. Relearning our daily lives again. Etc.

Yet, to Cassie it’s not really an “again” as much as it is a STILL. As in: “Still, living with MBC.”  Still dealing  with the unknown. Still accepting the reality that this disease always progresses. Still in the hard. And, yes, still committed to living as fully as we can. 

Again vs. Still. Is there a difference? Does it even really matter? Maybe it’s like so many things wherein both are true. We are still living with this disease and not all that much has changed other than meds (this time a clinical trial) and side effects. And, here we go again having to learn new patterns and routines.

It’s kind of like the world at large right now. The authorities are still killing innocent people and fomenting injustice. And, we once again have to organize and connect and depend on one another because we can’t trust our government.

It’s a lot on top of a lot. Again.  For us as a couple and for so many of us here in Minnesota. For the two of us it’s the inevitable progression of this disease on top of everything else. For our community it’s the weight of resistance in the face of government-sponsored  racism, xenophobia and violence. What we keep rediscovering personally is that it’s precisely when it all feels like too much that we have to lean further into connecting with each other and those we love. That seems to apply more broadly too. As Bad Bunny so eloquently expressed on Sunday: “The only thing that is more powerful than hate is love.” Still.

This past September Dan was supposed to have gone hiking in the Spanish Pyrenees with two friends. However, when Cassie’s cancer started to progress late last year and we saw the impacts the new meds were having, we decided to pull the plug on this trip. It just seemed like being away on a mountain in another country was a bridge too far at that moment. It felt scary and disconnected so Dan decided not to go.

This past September Cassie and Dan were supposed to have gone hiking in Yosemite. It would have been our first trip of this type and we thought it would be fun to do together and a good replacement for Dan’s cancelled Spanish hike.  However, four days before we were supposed to leave we again pulled the plug. This time a flare up of Dan’s plantar fasciitis was to blame. We knew it was the right call (trying to listen to what our bodies are telling us) but it was disappointing and we were both bummed.

Then we pivoted. 

We wound up at a Dude Ranch in Northern Colorado and it was a trip of a lifetime. We rode horses every day. Cassie on Rocky and Big Jake and Dan saddled up on Shiloh. We fished, shot some traps and saw multiple moose. The food was delicious. We made a new friend (hi Eileen).  It was magic and it was exactly where we were supposed to be. 

That’s the thing about couples living with MBC. We have had to get really good at pivoting. 

• Cassie not feeling well after we had made plans. Pivot.
• One of us is really stressed out or sad and wants to stay in bed for the day. Pivot.
• Vacation planned that turned out not to be realistic or the best timing. Pivot.
• Supposed to meet friends for dinner but one of us is simply not up to it. Pivot.
• The meds being particularly unruly today. Pivot.
• Start an evening out and realize you actually don’t have the energy you thought you did. Pivot.

And so on and so forth.

The keys to good pivoting for us are: remaining open, being gentle on ourselves and helping one another. It often takes one of us to give the other permission to slow down or change plans. We are both social. We both hate to disappoint our friends (for God’s sake we both hate being five minutes late to something so canceling at the last minute feels unnatural). We also both REALLY want to maximize the time we have left together so we have to help each other remember that often maximizing our time together actually involves doing less not more and that it’s perfectly fine to pivot! 

A few years ago we wrote about how hard it is for people/couples facing Metastatic Breast Cancer to answer the question: “How are you?” It’s just too big and too loaded.  Better alternatives include: “How are you today or how are you in this moment?” 

We thought we would answer that latter question.

Good things for us at this moment. Time in Winona. The new Springsteen movie. Family and friends. Our recent trip to a Dude Ranch (more on that soon). The Enneagram. Homemade Detroit Style Pizza. Dressing up for Halloween (a cowgirl and a Reese’s Peanut Butter Cup). College Possible’s 25th birthday. Our nieces and nephews. Daily journaling. Stillness. Magic. Cuddling. Sheet pan dinners. CPAP therapy. Hiking. Digitally unplugging. The new seasons of Slow Horses and the Diplomat. Caregiver CON. Buying Christmas sweaters (it’s never too early). 

Hard things for us at this moment. MBC (always). Trump. Depression. Medicine side effects. Friends dying. Creaky knees. Trump. Limited resilience. So much hate and fear in the world. Antisemitism. Loneliness. Slowing down without feeling guilty. Sadness. 

The hard is always there in some form or another and it’s pretty heavy. But so is lots of good and for that we are incredibly grateful.

Yesterday was Cassie’s seventh cancerversary. “Yay,” right? We are of course thrilled that Cassie is still alive as many women with MBC don’t make it seven years. And, at the beginning of all this, we never dared allow ourselves to imagine that Cassie would live that long. Thank goodness we were wrong and thanks for all of the prayers, positive energy and thoughts that people send our ways as a means of support.  Miracles can happen. 

It’s a complicated day and time though. As her first cancerversary approached, Cassie and a therapist she was seeing at the time, identified that it was important to acknowledge and mark this date annually for as long as she is still alive. One of the ways we have done that is by getting Cassie a bracelet every year on the 13th of July. We did that this year too and, as is often the case, Dan went looking for a card to accompany Cassie’s bracelet. So, what type of card fits the occasion? “Congratulations” – doesn’t seem right. “Thinking of you” – feels too cold. “Hang in there” – too informal. “Happy Anniversary” – hard no. It’s a real conundrum.

This year Dan got a card that simply said “Shit” and that pretty well sums it up. As grateful as we are to be marking seven years, we also find ourselves more exhausted, worn down, sad and lonely as the hardness of living with this disease compounds every year. One way of thinking about this is that while we have gotten better at managing life with MBC, living life has actually gotten harder. We share this not because we need anything from anybody at this moment (we promise we will say when we do) but rather so others will know that these milestones for people living with a terminal illness can be complex and bittersweet. There certainly a sense of “yay” for sure but there’s perhaps an equal or even greater amount of “sh*t.” 

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.