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.

On New Year’s Eve we wrote about “practicing joy” as one of our aspirations/resolutions for the coming year. But what do you do when, as hard as you might try, or as much as you may want it, there is no joy to be found? When you open yourself up to joy and nothing’s there? When moments, places and situations that had previously brought joy now feel flat and empty.

That’s the place we both found ourselves last year.

July was an especially hard month for Cassie. She felt worse than she had in a long time which is really saying something. Tired is her new normal but this felt like more than that – overwhelming fatigue, some dizziness and a constant sense of feeling generally “ooky.” Yet the cancer was stable, so her oncologist recommended that she consult her general practitioner. After a full examination, the doctor suggested that on top of everything else (Metastatic Breast Cancer, recovery from back surgery, etc.), or maybe because of everything else, Cassie might be depressed.

It was both a surprising diagnosis and at the same time not remotely a surprise. Surprising because Cassie hasn’t ever struggled with depression and doesn’t see herself as someone who is depressed. Not remotely surprising because…well of course she’s probably depressed. The past three years have been filled with unrelenting stress, fear, sadness and anxiety. It never lets up and it probably never will. Depression is a perfectly logical extension of all that and we actually greeted the doctor’s diagnosis with some relief because it was a way of making sense out of all Cassie had been feeling (or in some cases not feeling). 

Cassie started a low-dose regimen of Prozac and the results were pretty quickly transformative. She had significantly more energy, more get-up-and go and she welcomed anticipation and joy back into her life. It’s not like all was instantly good in her world, but for the first time in a long time, she found herself both looking forward to things and having the energy to do them as they arrived. A real gift.

Soon thereafter Cassie turned to Dan and said: “Hey these drugs (we call them ‘happy pills’) are really working, maybe you should try them.” To which Dan almost instantly replied: “I don’t think so. I don’t need those. I don’t think I’m depressed.” All of which were wrong.

Several months passed and two things happened. Dan continued to see the positive impacts of the antidepressants on Cassie’s day-to-day life and we went on two vacations with friends which were great but not the joyful experiences of Dan’s past. One moment in particular really stood out. We were at a vineyard in Oregon. Drinking wine, picnicking, taking in the gorgeous scenery. It was one of Dan’s favorite things in the whole world to do – drink good wine in a beautiful place with close friends – and had ALWAYS brought him great joy but on that day he felt….well not really anything, which some of his friends noticed and asked about with concern. 

That sparked Dan to talk with his therapist who, naturally, was more interested in why Dan thought he didn’t need anti-depressants than whether he actually did. Once that hurdle was cleared, Dan joined Cassie in becoming a daily consumer of Prozac and was soon experiencing many of the same positive results.

So that’s a big part of why we can now go into 2022 and think about “practicing” joy. Yes we can make it a practice. Yes we can be more intentional and yes we can celebrate joyful moments as they materialize. BUT all of that depends on actually being able to access a sense of joy and for that we both needed some help. For us antidepressants aren’t a silver bullet. They don’t make our sadness go away, or lessen the hard reality of Cassie’s cancer. We also know that they might stop working and/or require adjustments  over time. What the antidepressants are doing right now is helping open our hearts and senses to emotions such as joy and wonder that unbeknownst to us, had begun to slip away over the past cancer-filled years. We are grateful to have them back.

A couple of weeks ago Cassie was sweating through a doctor mandated 30-minute workout (Cassie’s most recent appointment at Mayo showed that a year after back surgery a part of her spine has yet to fuse and amping up her exercise routine is supposed to help). Anyway, during said workout, Cassie’s Peloton instructor talked about “practicing joy.” Between encouraging commands to push and race and blaring 90s holiday tunes (think NSYNC, Destiny’s Child and Britney) she talked about intentionally cultivating joy.

We practice mindfulness, gratitude, yoga, meditation . . . so why not joy? 

By becoming more aware of things that bring us joy, by taking time to acknowledge and cultivate those experiences and by spreading joy to others the hope is that it will become easier and easier to live a joy filled life.  Just like anything; exercise, mindfulness, meditation; the more you do it the more routine and habitual it becomes.

Then last week a different Peloton teacher shouted at Dan that “later is now.” Don’t put things off, she encouraged. You never know what’s going to happen or what’s coming up. All you’re ever guaranteed is today. 

Wise are these Peloton instructors.

Practice joy. Live in the moment. 

To us these feel like great reflections/resolutions to take into 2022 (plus Dan is going to try and cook 100 new recipes over the next 12 months, so yum). 

What brings us joy today . . .

Cassie drinking coffee out of her grandmother’s winter themed mugs. Dan taking long morning walks. Reading on the couch with Doc the dog on our laps, twinkle lights in the backyard, the laughter and silliness of nieces and nephews, playing a nightly card game (more joy for each of us when when we win, obviously), our river place in Winona, sharing a meal with Cassie’s parents, gathering with our friends. 

Here’s to even more joy in 2022. Happy New Year. 

Gratitude is not a given. Not for anyone and especially not for those living with late stage cancer. Gratitude is a practice. A way of looking at the world. Dan recently read a book  that asked what do you count each day? Challenges or blessings? We are choosing to count blessings as even with cancer in our lives we have so much for which we are grateful, including:

• The New York Times Spelling Bee
• Pickleball
• Six wonderful nieces and nephews (and one more on the way!)
• Vaccines
• Our remarkable and remarkably present friends
• Good wine
• The Inspector Gamache mystery series (thanks Kate!)
• Antidepressants 
• Renewed travel
• Morning coffee
• Grassroots Solutions evolution
• Support for caregivers
• Walks
• Those fighting for racial and social justice
• Doc the Basset Hound
• Gin rummy and cribbage
• Good health care
• Our Sether
• Peloton (especially Ally Love, Emma Lovewell and Andy Speer)
• Cassie parents and Dan’s stepmom
• Premade Thanksgiving dinner from Kowalski’s
• The latest season of Succession
• Winona
• A new therapist
• Tennis
• President Biden
• Our siblings
• Minimal cancer progression
• Enduring love
• And most of all this Thanksgiving season, being able to be TOGETHER with our family and friends 

Happy Thanksgiving. 

Love, Cassie and Dan

Last week we selected a burial plot. It’s in a beautiful and peaceful location in a non-denominational cemetery that overlooks our beloved Mississippi River. It’s just five minutes from our house and has great views of the downtown Minneapolis skyline. Best of all, for us, is that it’s dog-friendly and monument free (only in-ground grave markers allowed ) so it feels much more like a park than a cemetery. Did we mention it’s peaceful?

This marks the culmination of what’s been a long, and for Dan in particular, an emotionally arduous journey. Shortly after her diagnosis, Cassie announced that she wanted to go cemetery “shopping” so we did. It was raw and super heavy at first and we struggled to find a place that felt right to both of us (note many places that claim to be non-denominational really mean non-denominational Christian). But then, by pure happenstance, Cassie got lost on her way to our dentist and stumbled on this lovely cemetery established by the Masons in the 1920’s. She brought Dan over that same day and it felt more right to both of us than anything we had previously seen. 

At that point, we decided to slow our roll and visit it across all of the seasons. Each time we went it felt more and more like the place. We also appreciated learning that a founding Mason’s belief is that “everybody is equal in death” which is why they banned upright burial markers to avoid the trappings of wealth. We love that! We also loved the fact that the cemetery is now it’s own non-denominational nonprofit AND that it’s an Audubon bird sanctuary to boot. The fact that two MN governors (LeVander and Stassen) are buried there felt like a final positive sign given our active levels of political engagement as a couple. 

So we’ve known for some time that this is where we wanted to end up. The final step though was picking our specific gravesite which involved multiple visits, lots of walking around, jotting down the names of nearby graves and then looking at maps in consultation with the cemetery staff. It’s a lot. A lot of time. A lot of effort. A lot of emotional expense. A lot of sadness. It feels strange to be picking your final resting place when you’re in your early 50’s but it somehow also felt right. Maybe that’s because we gave ourselves the gift of time and didn’t force a decision while remaining focused on the overall goal. Maybe it’s because, since Cassie’s diagnosis, we’ve become used to talking about dying and death. Maybe it’s because it actually makes sense to do this when you are younger and not immediately before or after one of you dies. Or maybe it just feels right because we both feel at peace with where we landed (pun intended). 

Yes we both felt a little extra sad last week (especially Cassie). But we also feel a sense of closure and an ability to now let this part of the journey go. We are both grateful that Cassie has created her “death plan” and that this part of her plan is now complete (for more details on that topic see 8/24/2020 blog post and this template Death Plan Work Sheet.August 2020). Dan is still promising to finish (well honestly to start) his own death plan and seeing the sense of peace that Cassie has achieved is inspiring and motivating.

Honestly, the hardest and most beautiful part of this whole finding your burial site experience has been doing it together. Hard because it forces you to actively contemplate the death of the person you love most. Beautiful because you get to hold hands and be scared, vulnerable and connected with each other. 

Today’s my birthday. For the last ten years I’ve shared a celebration with our niece Sylvia whose birthday is just days after mine. We usually have apple pie (my favorite) AND birthday cake (though every year they somehow get my name wrong on the cake — Don, Denny, Donnie, etc. and I’m beginning to think that’s not a coincidence).

Anyway, historically when I’ve blown out my birthday candles, I’ve wished for the Cubs to win the World Series. Since Cassie’s Metastatic Breast Cancer diagnosis, however, my focus has changed. For the past three years, I’ve wished for more time together and that continues to be my deepest desire. This year though, I’ve decided to be more proactive and not just hope that Cassie gets more time but to do something about it.

So, for my 54th birthday, my wish (and request) is that people will join us in supporting METAvivor the only nonprofit in the country that exclusively raises money and advocates for Metastatic Breast Cancer research.  You can contribute to our METAvivor fundraiser through this link:

After Cassie’s diagnosis, we were shocked to learn that only 2% of all funding for breast cancer research is dedicated to metastatic research even though nearly 30% of the people diagnosed with breast cancer will unfortunately experience a metastasis. That’s why the median survival rate for women with MBC is still only five years. This disparity in funding research is wrong and has to change.

That’s where METAvivor comes into the story. It’s a wonderful nonprofit founded and led by women with MBC. 100% of the money they raise goes directly to metastatic research and since their inception METAvivor has funded over 17 million in research grants. Cassie and I are both active volunteers and I co-chair METAvivor’s Advoacy Committee. Our goal with this fundraising campaign is to raise at least $10,000 (and hopefully a lot more) by the end of the year and Cassie and I will match the first $5,000 in contributions.

So this year my birthday wish is that we begin to change the gap in funding metastatic research together. Ten years ago the drugs that are keeping Cassie alive didn’t exist and research led to their development. Please consider contributing to our METAvivor fundraiser so new research can likewise be supported. Maybe you’ll also consider learning more about METAvivor and even signing up for the Stage IV Stampede our signature advocacy event which this year is being held virtually during the entire month of October.

Thanks for helping my birthday wishes come true.

PS: Here’s the full link again as it can be tricky to find when embedded in the text.  https://donate.metavivor.org/fundraiser/3508769

At the beginning of the pandemic, there was lots of talk about having to adjust to a “new” normal. It makes all the sense in the world as many of our lives were turned upside down and we had to learn to adjust on the fly. It’s been hard, exhausting and unrelenting as the Delta variant continues to spread and too many people remain unvaccinated. Our societal sense of the new normal continues to evolve.

As a couple confronting Metastatic Breast Cancer, it’s pretty much the same thing but with a twist. We had to change our lives with little warning. It’s scary, exhausting and unrelenting. We’ve talked a lot since Cassie’s diagnosis about our new normal. Here’s the twist though. It’s not one new normal, it’s many. How Cassie feels is constantly changing and it’s so unpredictable. At the beginning, when she first started treatment we assumed that how Cassie felt would track her medicine cycle of three weeks on and one week off. Unfortunately it’s not that simple. Sometimes her best week is indeed week four when she is off her meds but not always. Other times she actually feels the worst on week one and pretty good on week three. Huh? It makes it hard to predict and plan. 

We’ve come to realize that for us normal is an illusion. Our normal is always new, always changing and the only certain thing about our normal is that it’s filled with uncertainty. It can be a tough way to live but we are also coming to see that you gain some freedom when you give up on the idea of “normal” and instead just embrace the day or week however it unfolds.