Nights Apart

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Cassie is the driver in our family. Everybody knows this. And it’s not just because she really likes to drive — which she does — it’s also because Dan is a lousy driver. Everybody knows that too. It’s not all his fault though as he comes by it naturally. Both of Dan’s parents made driving an adventure and neither of his brothers is an automotive rock star. So Cassie has always been the primary driver in the relationship.

This is significant because we decided to spend ten weeks in Northern California again this spring and we have historically driven out so that Doc the Basset Hound can join us and so we can have our car while we are there. This year, however, we decided it didn’t make sense for Cassie to do the drive given her varying energy levels. So Dan drove out with one of our close friends who graciously volunteered to make the trip. More accurately, our friend drove and Dan handled podcasts, snacks, and restaurant selections.  

It was a great road trip for them covering four nights and five days. The weather was perfect. The scenery beautiful. The podcasts funny. (Who knew true crime could be funny?) Yet it also represented the longest we have been apart since we learned that Cassie has metastatic breast cancer. Even though it was only four nights, we missed each other. We were both lonely and a little out of sorts. Dan was worried about Cassie. Cassie found it strange being in the house  without Dan or Doc. Dan didn’t sleep well because he kept rolling over, seeing an empty bed, and contemplating his future. 

It got us both thinking. How do we decide whether or not to spend time apart? We’ve both always been fiercely independent. Before the diagnosis we both traveled a lot for work, took  trips on our own and spent weekends away with friends. Sometimes we’d even make plans without consulting each other because it felt like we had all of the time in the world and both wanted the other to have fun. Now it all seems different. Every night away from each other feels like a lost night. Yet we still have things we want to do on our own and people we want to spend time with individually. So how do we decide? 

Sometimes it’s clear as it was with the California trip — the ends (ten weeks in California together and quality road-trip time with a close friend) clearly justified the means (five days apart). In other circumstances though, we’ve found we need to intentionally consider a set of questions before making plans. Will the time away from each other be restorative and energizing? How is Cassie feeling? How connected are we as a couple at that moment?  When were we last apart? How many nights are we talking about? 

There’s no clear formula but we’re realizing that time together is more precious than ever and sleeping next to each other can no longer be taken for granted. 

Fear Less

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Big spiders. Horror movies. What other people think. War. Trump. Identity theft. Home invasion. Failure. Clowns. Russian nesting dolls. 

Everybody has things they’re afraid of.  

Since Cassie’s diagnosis, we’ve picked a word or a theme for our year. Last year it was “A Year of Wow and Wonder.” This year we’re considering Fearless or Fear Less.

Fear can get in the way of living life. And, when one has limited time you don’t want any more obstacles.  Yet we can all think of instances when fear prevented us from experiencing something that could have been amazing and we wind up missing things because we couldn’t overcome our insecurities or anxiety.

Facing a terminal illness can be very scary. Fear of pain. Of side effects from medications. Bad scan results. Good scan results because then you know the bad results are just around the corner. Fear of not being able to do the things you want because of your illness. Fear of dying. Fear of being the one left behind. 

While it might be unrealistic to put aside all of these fears, as a couple we can agree to try and “fear less” together. We won’t let fear take over our days or drive our decision making. We will jump into this life with cancer with both feet. To live our lives to the fullest and not wait to have experiences or embark on adventures because of fear. Even fearing less won’t be that easy. We used to look at each other when we were scared and say “everything is going to be OK.” Now, that formerly comforting phrase rings hollow but we can still try to be less scared, less owned by fear, today

Living without fear may be impossible but fearing even a little bit less feels more doable.  So that’s our plan. What’s yours?

Love

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We’ve never been huge Valentine’s Day people. We don’t hate it or anything and we don’t disdainfully dismiss it as a “Hallmark” holiday but it’s never really been our thing. We don’t exchange gifts or go out. We’ve traditionally given each other a couple of cards and called it a day. 

Then last year, following Cassie’s diagnosis, we found ourselves wanting to have a small Valentine’s Day dinner party for the first time ever. We had some friends over.  Dan cooked a delicious meal (actually he recreated the first meal he ever made for Cassie which turned out to have been on Valentine’s Day 1992 so maybe we are more VD people than we thought). We shared stories of how we met.  It was great.

This year we are doing the same thing and we’ve added a robust Valentine’s Day playlist and an eagerly anticipated — by us anyway —  game of “lovers bingo” (get your minds out of the gutter its pretty clean). The bubbly is on ice, Cassie is decorating the table, Dan has on special heart socks and the cooking (once again of the “first meal”) will commence shortly.

So what changed? Why is Valentine’s Day now something that feels more worthy of marking? It’s probably because we’ve learned you can’t take anything for granted including or maybe especially love. We constantly say to each other that we feel so lucky to have such a strong foundation. To still be so much in love. To have our feelings for each other sustain us in the midst of unrelenting sadness and grief. Not all couples going through a terminal cancer diagnosis have that going for them and many unfortunately end in divorce. Others die so quickly they don’t make it to the next Valentine’s Day. Before, on February 14, we used to blithely say that everyday should be a “day of love” but now leaning into Valentine’s Day and celebrating our twenty eight year love affair feels really important. And doing it with some of the friends who have helped support us and our relationship just seems right. 

Tell someone you love them. Don’t wait. Happy Valentine’s Day.

Finding Balance (or how Cassie learned to nap)

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Dan comes from a family of big nappers. Cassie didn’t grow up that way. This has been one of those areas that we have had to reconcile over the course of our marriage. It’s been hilarious. There was that time Dan’s whole family was napping in Chicago and Cassie answered a knock on the front door only to be confronted by a total stranger dressed all in leather with a huge St. Bernard. (Everything worked out because “it was just Cousin Bernie.”) Or Dan trying to give Cassie napping lessons to limited success. (“Lie still. Close your eyes.”) We rest and recharge differently. And we’d grown OK with that over the years up to the time of Cassie’s diagnosis.

Then the recent holiday season got us both re-thinking the whole concept of rest. During all of the holiday craziness Cassie was constantly balancing her desire to participate in every activity, every party, every outing — every one of those fun opportunities that are presented that time of year —  with the voice in her head that asks “will a late dinner on a week-night be too much?” “ Will a particular activity today cause her to miss other fun things later in the week?” It’s really hard.

Dan, not surprisingly, often suggests that Cassie “take a nap” or cancel an activity. Cassie usually opts to push through. “I’ll sleep when I’m dead,” she says.  But, there has to be a balance. 

What we’re learning is that resting one day doesn’t necessarily equate to energy the next. But having a number of really full days strung together is not just exhausting but makes Cassie feel even worse than usual. And, that living in the middle – neither fully doing or totally resting – is unfulfilling. So, Cassie must follow her gut and do what feels right. Sometimes pushing through for a number of fun activities is totally worth it! Sometimes the voice in her head will say: “This is too much” and we need to listen to that and be aware of the consequences if we choose differently. It’s a constant balancing act but we’ve come to appreciate two things: 1) That relying on Cassie’s intuition usually gets us to the right place and 2) That those napping lessons are finally paying dividends.

The Great Lizard Incident of 2020

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Aloha.

We are just back from an almost two week vacation in Hawaii. It was our first time there and we jokingly referred to this trip as Cassie’s “make a wish.” Going to Hawaii is the only thing that Cassie’s said she wanted to do before she died. So we made it happen. “Don’t wait.”

It was a wonderful trip but it also got us thinking about vacationing with cancer. Like everything else, it’s different now. The biggest change is that we used to be able to go on a long vacation and leave life behind. Unplug. Forget about work or our to do lists. Recharge. It’s what made vacations so special and we were good at it. Despite our mutual Type A personalities we had both become excellent vacationers adept at letting go, shutting off our email and leaving life at home. 

Now though, after Cassie’s diagnosis there is no true way to get away. Her cancer is with us all of the time. It’s a constant. She doesn’t suddenly feel better because we are on a beach (though it is certainly better to feel crappy on the sand than in the snow) and our sadness doesn’t miraculously disappear as we board an airplane. MBC is on vacation with us and that’s a hard reality to accept because you want to escape it. You want a break. You want vacation to be what it used to be and you don’t get any of that. It’s unrelenting and omnipresent and that’s hard.

And it’s not just the cancer’s constant presence. It’s small things, too. Like the night Cassie had an allergic reaction to something for the first time ever and we freaked out. Do we go to the ER? Do we call her doctor? Do we take pictures of the rash? Thankfully a Benadryl took care of it but we were totally freaked out in a way that never would have happened before. 

Like we do at home, we tried to adjust and create room for the cancer – you can fight it or you can buy it a seat on the plane so that’s what we did. Feeling sad – bet a Mai Tai will help with that (don’t tell our therapists). Low energy – no problem the pool is right there. We didn’t ignore it or try to be cancer “champs” and tough it out. We talked about it, explored how it was making us feel and how we could respond to those feelings by changing our expectations, plans or pace. It wasn’t easy but it also wasn’t bad. We only had to accept that vacationing with cancer is just different. Fortunately, in spite of the differences, the three of us (Cassie, Dan and our third wheel MBC) all had a great vacation.

P.S. The lizard incident wasn’t really that big of a deal. We were driving back from the beach. Cassie had her window open and her arm hanging out. She felt something on her arm and looked down to find a lizard. She screamed. Dan almost crashed. We pulled over and got it out of the car. That’s all. But then we decided it would make a great title for a blog post so there you have it. 

Resolutions, Reflections and Such

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Like many, we have a long and complicated relationship with new year’s resolutions. For years we made and promptly ignored them. Then we simply ignored making them. There was a good multi-year streak when Cassie’s annual resolution was to “drink more sparkling wine” and Dan was all too happy to tag along with that one. Finally, because he is prone to over complicating things, Dan developed a tradition of starting to think about a resolution on New Year’s Eve and then adopting it by the end of the first quarter and letting it run for the next year. That approach actually seemed to work for a while as Dan focused on things like being less judgmental, more grateful, choosing without regret, etc. 

Last year following Cassie’s diagnosis, we simply let NYE pass without giving thought to resolutions. We were just trying to hang on. During this past year though we have learned that our life now requires a much higher level of intentionality. That can look different for each of us. Dan tries to set a daily aspiration. Cassie focuses on intentionally slowing down. We are checking in with each other more often and adjusting our schedules and plans on the fly. We have also talked about maybe needing or wanting a “theme” for our year to anchor us and provide some direction or sense of purpose for the year ahead.

So whether you call it a resolution, reflection, aspiration or theme here are a few things we are thinking about for the coming year.

  • Embrace a sense of adventure and all that comes with it — the excitement, fear, anticipation and the unknown to name just a few things.
  • Lean into gentleness — for us each individually and together as a couple. We aspire to “radical self-acceptance” but even just a little more self-gentleness will be good.
  • Ask for help/accept help. We are so lucky to have a loving support community and we can let them in even more.
  • Slow down.
  • Be generous.
  • Don’t wait.
  • Have fun.
  • Drink more bubbly. 

Happy New Year!

 

The Holidays

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This is our second holiday season since Cassie’s diagnosis. Our first one, last year, did not go all that well. Like most families we have our share of holiday traditions. Parties we attend. Celebrations we host. Silly sweaters we wear. Foods we love. Foods we quibble over (like Dan’s annual attempt to update the old fashioned green bean casserole at Thanksgiving). Gifts we send. On and on. 

Traditions are good. They are something to look forward to. They’re fun. They anchor us and provide comfort. So last year we didn’t really change a thing. We did it all. Actually, we did even more as we raised the bar on ourselves by adding new dishes to some meals and cramming in new events between Thanksgiving and Christmas. We thought that we had better pack it all in because “who knows what next year will bring or how Cassie will feel?” It was too much.

To be clear last year’s holidays weren’t horrible. They just didn’t turn out as we had expected. Of course it was great to spend time with family and to see friends and without question the food was delicious (well not the “new” green bean casserole but everything else). It was just that we really wiped ourselves out and for the first time in our lives together we couldn’t wait for the holidays to be over. We were also so busy (and Cassie had so much less energy) that we wound up being disconnected at different times as Dan tried to compensate all on his own for Cassie’s diminished capacity. Finally, we came to realize that last year we had inadvertently made ourselves really sad. That’s because we had set up a direct comparison between the way all of our traditions used to feel (pre-diagnosis) and how they felt in our first set of holidays post-diagnosis and that turned out not to be a good comparison. 

We have subsequently discovered that having hard holidays is pretty common for couples wrestling with a terminal cancer diagnosis. We have both heard lots of stories in our support groups and discussed it during therapy. One wise person observed that you have to go through “all of the seasons” to truly understand how much everything — every holiday, occasion, anniversary, tradition, etc. — has changed. 

So now we’ve been through all the seasons, and while we still have lots to learn, we are approaching this year’s holidays differently. We are creating some new traditions for our “new normal” so that we are no longer making side-by-side comparisons to the way things used to be. We are doing less and asking for more help. We are building in down-time. We are checking in with each other often and altering plans as necessary to stay healthy and connected. We are trying hard to appreciate these holidays for what they are and for all that we have right now and not look backwards with nostalgia or forwards with angst. It still feels really different but at least so far it’s a lot better than last year and our hope is that along with our ever-present sadness we are also creating room for some holiday joy to return. Oh yeah and this year’s re-imagined green bean casserole was better too so we have that going for us, which is nice. 

A Rabbi, a Death Doula and Mr. Rogers

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When Dan’s mom died this past May the Rabbi at her St. Paul Shiva shared an interesting observation. He explained that Jews traditionally avoid euphemisms like “passing” or “moving” on. They speak directly of death and dying. Now the Rabbi wasn’t being critical of other faiths or traditions he was just noting that death is certain and unavoidable and that confronting this certitude directly and head on can actually be healing. 

This was affirming to both of us because we had already started to do this. As we shared in a previous post, Cassie was a little obsessed with planning the details of her death, burial and funeral and we have been doing that in fits and starts for almost 14 months. There is also a lot of dark death humor in the Cramer household these days. And while this often takes our friends aback, it helps us to talk and joke about it. This is our life now and while hopefully still many years off —the previously abstract and far-removed idea of death has been replaced by a new and more immediate reality. Death now seems closer than we would ever want or have imagined and we just have to deal with that fact.

So with all of this on our minds, Cassie signed us up for a Community Education Class called “Death: It’s a Collaborative Event.” We walked into Central High with some trepidation but also open to what we might learn. And we learned a lot. First though, we were a little surprised to find that the class wasn’t filled with people like us who were confronting what could be the imminent death of a loved one. Instead it was attended by people who were seeking to better understand death and how to navigate this one great certainty that we all confront. 

The class leaders, a “death doula” and a celebrant (who helps create traditions and lead ceremonies) explained that we can “have the death we want” but only if we talk about it and plan for it. They led us through a visualization asking us to picture our final days. The room we are in. The way it looks and smells. The art on the walls. The photos by the bedside. The music playing. What surrounds us? Who surrounds us? Is someone with us all the time or do we want to be left alone at some moments? Have we written goodbye letters? Recorded video? Have we put ourselves in a position where we can let go? Are we set up to die on our terms or are we leaving all that to chance?

We sat there with our eyes closed imagining all of this. We reached for each other’s hand. We cried. But we also appreciated the questions and the conversation that followed. The biggest piece of advice — create a death “plan,” write it down and share it with our loved ones. Now on the one hand that seems hard and scary but on the other really liberating. So that’s what we are doing — together, one plan for each of us, and we have given ourselves a deadline so we can be done with the fits and starts and focus our energy on living. Then as a final affirmation, we learned that even Mr. Rogers talks about death. We recently saw the new movie “A Beautiful Day in the Neighborhood” and both walked away with a Fred Rogers’ quote about dying stuck in our heads: “Anything that is human is mentionable. And anything that is mentionable can be manageable.” Even, or especially, contemplating death. Thanks Mr. Rogers, Death Doula Jane and Rabbi Latz for the inspiration.

 

A Gratitude Post

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We are grateful for…

  • Macaroni and cheese
  • Friends who listen
  • Good health insurance
  • Snow (this one is all Cassie)
  • Laughter and hugs from our nieces and nephews
  • Long walks
  • A cuddly basset hound
  • Jeopardy (especially the episodes with James Holzhauer)
  • New restaurants and dining experiences
  • Good books
  • Dumb jokes
  • Red wine (OK, white and rose too)
  • Holiday parties
  • Caregiver support (Jack’s Caregiver Coalition)
  • Caregetter support (Firefly Sisterhood)
  • A superb oncology team
  • Soft blankets
  • Colleagues who have your back
  • So many good local breweries
  • Clarity about what matters most
  • Sweat pants
  • Winona
  • A crackling fire
  • Exceptional therapists
  • Binge worthy television
  • The Highland Grill
  • DB
  • Brothers and sisters
  • Parents
  • Turkey and stuffing
  • Things on the calendar to look forward to
  • Enduring love

Resilience

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Today Doc got his tail caught in a door. Dan was taking him for a walk and heard him yelp but didn’t notice anything wrong and assumed the door had just banged on him a little. He finished the walk and left Doc at home as he headed out to meet a friend for breakfast. Cassie was already out having breakfast and preparing to go to her favorite exercise class.

Then Cassie got a text. It was our cleaning person, Emily, expressing concern about Doc. She said there was blood everywhere. The house looked like a crime scene. Doc’s tail looked cut but Doc wouldn’t let her near him. Cassie rushed home calling Dan as she drove. We were both really worried.

The house was as reported. Blood on the carpets. Blood on the sofa. Blood all over Doc. Emily told Cassie she had been so worried when she walked in that she looked all over to see if we were ok. We were — Doc wasn’t. He was crying and still bleeding. Cassie called Dan on her way to the vet and he literally came unglued. She couldn’t understand a word he was saying as she sought to learn what had happened. He was sobbing, the dog was whimpering, Cassie was driving fast. It was a little chaotic to say the least.

After the rapid trip to the vet Doc now has a long pink bandage on his tail and is drugged out of his mind. There is some concern about whether he will fully heal and if not he will have to have the tip of his tail removed. Poor guy. 

Now unexpected things like this happen all of the time (though thank goodness this particular one hasn’t happened before). Historically when things arose we would just deal (just as Cassie did today) and then move quickly on. We have long prided ourselves on being pretty good in challenging situations and even better in a genuine crisis. Now though, following Cassie’s diagnosis, things like this knock us on our heels. We cry more easily. We worry more. We obsess in ways we didn’t before. We overreact. We catastrophize. Today it was about Doc. Last week it was a challenging work call for Dan. The week before a hard series of events for Cassie. What we are noticing is that we simply aren’t as resilient as we used to be. We are raw. Most of our energy goes to getting through the day and trying to stay as positive as we can. So when something unexpected and hard arises that extra gear we used to rely on isn’t as easy to access or maintain. Recognizing this lack of resilience helps. Naming it is even more important. And the best antidote we have found is to slow down and be gentle — on ourselves and each other (and on Doc).