Blog

Even before Coronavirus hit and many of us started “sheltering in place,” we had been struggling on and off with a sense of isolation. Since Cassie’s diagnosis, our life and routines have changed so much that we’ve had to consistently pay attention to our emotional health and sense of connectedness. 

We’ve learned (and are still learning) that keeping spirits up in a time of isolation and fear can be challenging. At the same time, we need to do our best not to spiral and succumb to feelings of loneliness, sadness and lack of purpose.

Here’s how we are trying to manage in the face of even greater isolation right now.

Focus on gratitude – even in the midst of this current pandemic crisis, we’ve got much to be thankful for. Safe shelter, plenty of food, access to good healthcare, ability to work less, just to name a few. So many others are facing huge obstacles. That leads us to thinking about…

Leaning into generosity – how can we help those who need help? We are donating to organizations on the front lines. We are buying restaurant gift certificates. We are responding to friend’s fundraising appeals for organizations they support. Supporting others is a good way to get out of our own heads and stay connected.

Connect with friends and family – one benefit of technology and being constantly connected is that although you can’t be with friends in person you can call, text, facetime, zoom, etc. It’s a blessing. We’ve both got a couple of virtual happy hours planned and all of our nieces and nephews should be watching their mailboxes for some help with the quarantine blues.

Exercise – Dan joined a health club here and it is still open but that doesn’t seem right. (No amount of bleach wipes can make that safe.) So, we’re opting to walk and walk and walk. It’s not even early afternoon and Dan has exceeded 10,000 steps. (Cassie will get hers later!) Doc loves these long walks.

Do projects – if we were home Cassie would be cleaning closets, scrubbing floors and emptying cupboards. But, since we’re in a rental house there is less of this to do. So, we are going to try to finish our death plans (both of us). Lots of letter writing is also in our immediate future. And, we’re posting a daily picture on Dan’s instagram page because not all projects have to be big ones!

Build in time together – Even though we are together almost constantly (here and at home), we’re still often doing our own things. Reading, Dan working, on calls with friends, etc. So, we wanted to build in some mandatory connecting time. We’ve decided to make it our mission to attempt the New York Times crossword puzzle each day. And, we’re committed to making our way through the 100 best movies of all time as named by the American Film Institute (https://www.afi.com/afis-100-years-100-movies-10th-anniversary-edition/). We just watched Guess Who’s Coming to Dinner last night. We’d highly recommend it.

Isolation is lonely. The unknown is scary. Our spirits can easily sag. All of that is natural but we are learning that creativity, invention and silliness can become natural too if we focus on them.  If there are things you are doing to keep your spirits up we’d love to hear! Please share in the comments.

Last night Dan snapped at Cassie out of the blue and she responded with her own snappy retort. Our “snappiness” didn’t last long and it didn’t take Einstein to figure out that it had nothing to do with Dan’s particular comment. Rather we were both anxious and stressed out (like everybody ) due to Coronavirus.

Yes we are trying to “fear less” but how do we do that when, for the first time ever, one of us is in the special category (immuno-compromised people) that is being discussed on the news every minute? How do we fear less when we feel isolated being away from our friends and family? How do we fear less when we think about Cassie possibly getting sick 2,100 miles away from her doctors?

Do we stay here? Do we go home? We were already anxious before and now it feels like anxiety on steroids. 

Yet, at the same time, we don’t want to just give up on this time away. In many ways, since Cassie’s diagnosis, we have felt that one of the only things keeping us going is having stuff to look forward to and we’ve been anticipating this trip for well over a year. So while using common sense, we don’t want our fear and anxiety to rule us, to control our decisions. We don’t want to act precipitously or make a decision that we might regret when we have more information or a little time has passed.

On the one hand maybe going home makes sense. On the other hand, Cassie’s doctor didn’t say that and in fact said it was just fine to stay as long as we took precautions. And, if are going to have to “socially isolate” wherever we are, why not do it where its 70 degrees and sunny. Why not enjoy the delicious wine we have stock-piled and the fresh food that’s still available? Why not walk Doc among the vines (no people there), play a lot of cribbage in the backyard and enjoy each other’s company and focused attention?

There’s no clear-cut answer but we’ve decided to take it day-by-day and not let anxiety make the decision for us. That’s helpful in this moment and we have a feeling will also be a lesson that applies over and over again on this metastatic breast cancer journey.

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. 

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?

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.

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.