“Happy” Cancerversary????

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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.

Birthday Gratitude

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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. 

Vic

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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.

Mountains

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

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

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

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

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

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

Fatigue Empathy

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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.

New Year’s Wisdom From Peloton

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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. 

Birthday Wishes

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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

 

 

 

 

 

Dear Cassie

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July 13, 2021

Dear Cassie,

Today is your three year “Cancerversary,” a word that we didn’t even know existed in July 2018.

I can’t believe it’s been three years — in so many ways it feels like yesterday.

I can’t believe it’s only been three years – in so many ways it feels like an eternity has passed.

I’ll try to keep this short and sweet which you always say is best when it comes to writing. It helps that I’ve said all of this to you before but it feels important to say out loud again today. 

Over these past 36 months, you have often said to me that “nobody understands what it’s like.” And as much as I try, I now get that it’s impossible to truly understand unless you are the one living with the diagnosis. After three years, what I have come to realize is that most of us (especially well-off white people) wake up in the morning and are some variation of “fine.” Some days we may be a little worse than fine. Other days, a little better. But most of the time we’re just fine. Not you or others with MBC though. You wake up every day feeling some version of “shitty.” Often it’s pretty bad. Sometimes not as bad. But it’s never not there. The shittiness is constant. It’s unrelenting. It’s heavy. And that’s a really hard way to live.

Yet you do it. I don’t know how, but you do it every single day. Wake up and not feel like yourself but still step into the world. Do so much and see so many people when you are frequently exhausted. Embrace life in the face of death. Live with the fear that every new ache, pain or discomfort might be something really bad but not let that fear define you. Own your reality by honestly sharing how you feel when people ask. Model what it means to live with vulnerability. I learn so much from you and continue to draw strength and courage from you even though I often feel like I should be providing all of that to you. 

We have a big scan coming up and who knows what it will show. You’ve been feeling especially shitty lately and we are both worried. What I do know though, with absolute certainty, is that whatever comes (from this scan, the next, or one years from now) I am in it with you. We will hold hands. We will tell dark jokes. We will play gin and cribbage. We’ll stare at the river. We’ll walk Doc and make plans. We will live as fully as we can every single day. We will face whatever is to come together. I love you so much. Here’s hoping for many more Cancerversaries. 

Love, 

Dan

Grateful In Spite of Everything

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The other day, a friend of ours said that if a year or so ago, you had pitched 2020 as a movie or television concept it would have been dismissed as too unrealistic. As our friend remarked: “There is just no way you would have belived that so many hard and challenging things would all occur at the same time.” 

We couldn’t agree more. 

Yet in spite of everything, or maybe because of everything, we remain more grateful than ever. Among other things we are grateful for:

Our funny and generous friends.

Our incredible family.

Zingerman’s Deli.

Accessible health care.

Pelaton.

Dogs with floppy ears.

Skilled doctors.

Nieces and nephews.

The President-elect.

Zoom poker games.

Long walks (Dan)

Short walks (Post-surgery Cassie)

New puppies.

The Black Lives Matter Movement

Cooking.

Silly jokes (“Why don’t they play poker in the jungle? There are too many cheetahs.”)

Great colleagues and clients.

Jack’s Caregiver Coalition.

Good books.

Masks.

Learning.

Deep dish pizza (well any pizza but especially deep dish).

Ice packs and heating pads.

Haikus.

Cassie’s parents.

An enduring love.

While this Thanksgiving may not look like any other we have experienced, our hearts are still full and our gratitude plentiful. Happy Thanksgiving.

No Insignificant Birthdays

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My birthday was last weekend. On a birthday morning walk with a close friend, I found myself saying: “It’s just 53 not at all a significant birthday.” Then I almost immediately contradicted myself by adding: “But if we have learned anything recently it’s that there is no such thing as an insignificant birthday.” 

There is no such thing as an insignificant birthday. So simple but also a new mental frame. Who cares if the birthday doesn’t end in a zero or five? Every year we have is special and worth celebrating just because we have it. For me and Cassie, every birthday is a now poignant reminder that we are each still alive and choosing  to live our lives as fully and full of love as we can.

Early on, after Cassie’s Metastatic Breast Cancer diagnosis, a number of people said something that I found strange at the time. They remarked: “Well any of us could die anytime — I mean we could be hit by a bus tomorrow…” I still don’t know why people felt compelled to say that to us, but I found myself thinking about it a lot. Sure any of us could die at any time but most of us don’t live our lives that way. We don’t focus on the things that matter most or allocate our time as if we only have a limited amount of it left. Why not? 

I think it’s because while we say it we don’t really believe it. We think (especially well-off white people) that we are almost guaranteed to live to a ripe old age and to have all the time we need. Well for me that myth was shattered with Cassie’s cancer diagnosis. While I sure hope that all the data is wrong and that she lives for a long time yet, I am not planning on it. I want to live each day like we have limited time left because that’s likely the reality. I want to make the most of each day and each year and that’s why there are no longer any insignificant birthdays.