When Joy Doesn’t Come

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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.

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. 

Gratitude: Version 2021

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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

At Peace

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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. 

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

 

 

 

 

 

When Your Normal Is Always New

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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. 

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

Riding the Waves

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It is so amazing to be back out in the world! Being fully vaccinated for Covid-19 is allowing us to once again see friends close up, dine out (carefully), entertain and even travel.

In mid-May we went to Florida to visit friends in their brand new home on the ocean. The setting was spectacular, the house so comfortable, the wine delicious and the pool and the views were stunning. 

One afternoon Dan and our friend went to the beach and did some boogie boarding. The waves were big. Rough. Intimidating. They came back to the house a little beat up (and with pockets full of seaweed) but also exhilarated. Dan said, “You just have to catch the right wave and ride it as long as you can.” Cassie immediately responded: “Just like living with metastatic cancer.”

Living with MBC is a wild ride. Some “waves” are bigger than others – you hit a rough patch of not feeling well or you get bad scan results and all you can do is just try not to drown in how scary and overwhelming it all feels. Other “waves” are more easily managed. You find yourself in a spot where you can comfortably ride it out. Your head stays above water and you can even catch an occasional feeling of joy and lightness.

Right now, we are riding a good wave. Trying to enjoy this period which we have come to think of as the “in-between” time. Cassie’s back is recovering from her major November surgery just as the doctor had hoped. She still has six more months of not bending over and being very careful with lifting and twisting but that’s totally doable and overall we are feeling like we are close to the end of that journey. On the MBC front, Cassie has a scan at the end of summer to check if the lung tumors are continuing to grow (as they have three scans in a row) and to see if the cancer has found its way to any other part of the body. But, that scan isn’t until the end of summer.

Our challenge now is to enjoy this in-between time. To appreciate the wave we are on. To ride it as long as we can. To not spend a minute worrying about what may or may not be found in the upcoming scan. To not speculate about side effects of new medications. To just be in the here and now and soak up all that’s currently good in our lives.

Ride the wave. 

Fighting With Cancer

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We’ve never really been big fighters in our marriage. Of course we have regular disagreements and sometimes Cassie will inform Dan that “we’re fighting” only to let him know a while later that the fight is over. Other than that, fighting between us is not particularly commonplace.

A few weeks ago though we had a fight. It was a pretty run-of-the mill, typical long-time couples fight, that covered well worn ground. We don’t say that to minimize either of our perspectives but rather to simply note that this wasn’t remotely the first time in our almost 23 year marriage that we’d had this particular disagreement. Cassie felt Dan was ignoring her. Dan felt Cassie wasn’t giving him space. A lot of couples can probably relate and, in normal times, we might not even have categorized it as a fight.

Not in these times though. This time it felt like World War III. We were both angry, hurt and hurtful. We exchanged stinging retorts and retreated to different rooms. It felt really intense and heavy. We were both agitated and pissed off. Neither of us wanted to give an inch. Neither of us had an “I’m sorry” in us. It felt overwhelming like there was almost no way to resolve it.

That’s when it hit us — we weren’t angry about the fight, we were angry about our lives. About Cassie’s continued back pain and slow recovery. About the pandemic. About the impending start of the Derek Chauvin murder trial (thank goodness that turned out OK). We were both angry about all of that and as we came to realize, we were especially angry about Cassie’s cancer. It never goes away. It’s there every day. Constant and unrelenting. It makes everything harder and heavier. And for things like a “typical” couple’s fight, the cancer acts as an accelerant. It can easily blow the simplest most basic things out of proportion and it’s hard to see that when it’s happening. 

The other thing about fighting when one of you has a serious cancer diagnosis is that you frequently ignore little things that are annoying you because they can feel petty. Cassie knows Dan is doing so much as a caregiver so she often stops herself from raising small things that are bothering her. Similarly, Dan sees how much Cassie is suffering so he too often holds onto issues rather than communicating openly and directly. Left unsaid, these small things simmer, fester and grow. Then they blow up into something that feels much bigger than the underlying issue. It’s yet another way cancer acts as an accelerant. 

Once we realized what was happening it was easier to let go of our mutual resentments. To apologize to each other, hug (gently) and make up. It was a lightbulb moment for both of us. Cassie’s cancer impacts everything so we will often have to pause and ask: “What are we really reacting to in the moment?” How much is about the issue of the day and how much is about the overriding issue in our lives?  How much are we holding onto and not saying because we don’t want to “bother” the other, risking simmering resentment. That’s a whole lot of intentionality to be sure and we will most definitely miss the mark with some frequency. That said, in the years ahead as we have other arguments, gaining some clarity about what might really be driving our anger is helpful to both of us.

Hitting the Wall

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There was an article in the New York Times this past weekend that caught our attention. It was titled “We Have All Hit a Wall” and it really resonated for both of us. In particular, the following statement, jumped out:

“A year of uncertainty, of being whipsawed between anxiety and depression, of seeing expert predictions wither away and goal posts shift, has left many people feeling that they are existing in a kind of fog, the world shaded in gray.”

This was written about the pandemic of course but we found ourselves thinking about it in relation to Cassie’s Metastatic Breast Cancer diagnosis as well. Except instead of one year of uncertainty it’s been closer to three. The “whipsawing” reference feels particularly relevant this week as we just learned that Cassie’s cancer has continued to progress. Not a lot by any means, but there has now been growth over the last three scans and we seem to be approaching a juncture where changing medications could well be in order.  None of this is remotely unusual, or unexpected, but we definitely feel whipsawed from the high of seeing her back brace removed in February back to the reality and uncertainty that is life with MBC.

We also related to this other point in the article: 

“Stress is OK in small amounts, but when it extends over time it’s very dangerous. It disrupts our cycles of sleep and our regular routines in things like exercise and physical activity — all these things make it very difficult for the body to be resilient.”

Lots of stress? Check. Extended over a long time? Check. Disrupted sleep cycles? Check. Diminished resilience? Double check. We have especially found ourselves struggling with resilience.  Over this last pandemic-dominated year to be sure, but also over the past few days since we found out about the cancer growth (especially Dan). So what do you do when you’ve hit the proverbial wall? When your resilience is in short supply and continued uncertainty and stress abounds? The article didn’t offer a lot of suggestions which we actually found kind of refreshing. For us, the best we’ve been able to come up with is to go back to basics — to the things that grounded us in the beginning when we felt the most overwhelmed.  Cassie said it well the other day: “We’ve just got to focus on living as fully as we can right now in this moment.” 

That might not look the same as it did pre-pandemic but with both of us being close to fully vaccinated “living” life can certainly involve a lot more than it has these past twelve months. Bye bye Zoom happy hour and hello in-person cocktails! We’re booking travel and trying to figure out when we will feel safe eating inside a restaurant. We’ve also decided to revisit our buckets (See 3/21/19 post for more on those), refresh them and start actually scheduling things that bring us some lightness and joy. It’s not going to be that easy as we remain anxious, scared and cautious. We have to wait four more months until the next scan but we are not going to suspend our lives until then — especially not after the last year.

It seems like when you hit a wall you have to decide whether you are going to keep trying to push through it or change direction and try something else. This week we are going with the second option.