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We got back from California six weeks ago today.

It’s been a bumpy transition.

The drive home was scary with virtually no masks to be seen in the five states between California and Minnesota. We were greeted at home by a letter from Cassie’s oncologist notifying her that he was moving on from his primary practice. We had to figure out how to shelter-in-place here. We were scared we might have picked up the Coronavirus on the way home so we strictly self-quarantined for 14 days. After that, we had to work through all the decisions that our friends and family had already confronted while we were gone and living in relative isolation in California — who do we see, how do we see them, how to stay safe, how to shop, where to shop, does Cassie go out or only Dan, how do we get house repairs done in a safe manner, on and on. We didn’t always see eye to eye on these things so we had to talk them out again and again. At the same time, Dan’s work (which is supposed to be pretty limited right now) not surprisingly intensified as his clients confronted the ongoing reality of working through a pandemic. Our lives aren’t currently set up for Dan to work a lot so this added even more bumps.

And that was all before George Floyd was murdered. His tragic death isn’t a bump though. It’s an earthquake the magnitude of which none of us yet know. Our hearts broke at the injustice but we are trying to hold onto hope that the resulting tremors will shock and eventually topple the foundations of systemic racism that underpin our country. We’ve been trying to figure out how we can best fit into the “movement moment” that seems to be emerging at a point in our lives when our attention and energies are consumed by Cassie’s cancer. One thing that has occurred to us is that given our current life situation we are in a position to learn and speak about the racial disparities that exist in health care in general and cancer care in particular so we will do that at a minimum. 

The murder of George Floyd is the first thing in the last two years that has dramatically shifted our focus from Cassie’s diagnosis. Of course her illness is still there. This week in particular Cassie has felt like she’s been hit by a truck, drained, tired, wiped out — googling “why” she is feeling so exhausted (answer: she has late stage cancer and the medication she is on impacts her differently at different times) and hoping this doesn’t mean that anything has changed medically. At the same time, as we try to ease back into our Minnesota life and put the bumpy transition behind us, our passion for justice remains, our recognition of our own privilege is acute and we are committed to doing what we can given where we are right now. Metastatic Breast Cancer is such a big thing but it’s not the only thing. 

When we received Cassie’s Stage IV cancer diagnosis in July of 2018 the only thing we knew for certain was our lives would never be the same. 

Having late-stage cancer means your life is filled with uncertainty. What will a scan show? What will side effects of medications be? How long before the disease progresses? How long will Cassie live? Will our relationship survive the stress? How will our relationships with family and friends change? 

After almost two years of living with metastatic breast cancer, we have learned to manage that uncertainty just a little bit. As a couple, we’ve developed coping mechanisms and patterns to help us through. While we haven’t mastered the cancer uncertainty by any means, we have gotten more comfortable with it. 

Then along comes coronavirus.  Our already uncertain world is rocked with more uncertainty. What happens if one of us gets the virus? How do we stay as safe as possible? Can we see our family and our friends? How do we live our lives to the fullest in this crazy time?

Coronavirus has stripped away some of our traditional coping mechanisms like having dinner with friends, hosting our family at our home, going to a brewery or to a movie. The new uncertainties of the times coupled with the cancer uncertainty has rocked our world. Uncertainty has met uncertainty and it’s disorienting. 

We were in California when the first stay at home orders were issued. We remember being in disbelief. This is really serious! One on hand it was difficult to be so far from home and our support network during a pandemic. On the other hand, there were less choices we had to make. No friends or family to see, no restaurants to go to, fewer choices to make which was helpful so we just stayed home.

Now, back in Minnesota, we’re once again faced with lots of uncertainty. As our state opens up, there are so many more choices we’ll have to make and more choices means more uncertainty. It’s scary and once again we feel like we are in a period of transition into some new unknown phase. We imagine that like what happened with cancer, we’ll get better at living in the world of coronavirus uncertainty. But, we also know that it’s likely to take some time. 

When Coronavirus hit California (where we are spending this spring) Dan wanted to come home. Cassie didn’t. 

Dan was scared being so far from home, our support network and Cassie’s doctors. He worried incessantly about what would happen if one of us, especially Cassie, got really sick. More than anything else he feared her being in a hospital and possible dying alone.

Cassie on the other hand actually felt more relaxed than she had at any point since her diagnosis. Napa is her happy place. She was sleeping better, walking more and, as she pointed out it’s not like we would be seeing people if we were home. She has spent a lot of time contemplating her own mortality since her metastatic breast cancer diagnosis which probably explains why her fear was less pronounced than Dan’s.

So do we leave or do we stay?  Does Dan get what he wants or does Cassie? That was our conundrum in early March.

We decided to give it a few days on the well-learned theory of not making major decisions impulsively (been there, done that). Yet we remained at loggerheads. Dan grew even more anxious. Cassie more settled. 

How to decide?

Like all long-married couples we’ve had our share of disagreements and we’ve learned how to work through them. We can usually find a compromise or talking it out leads to one of us changing our minds or deciding that whatever it is actually doesn’t matter that much to them. 

Then Cassie got sick and her diagnosis has complicated our decision-making process. Dan’s initial tendency post-diagnosis was to just agree or cede to Cassie’s wishes/opinions but that turned out not to be such a good idea because it drove her nuts! Cassie doesn’t want every decision to revolve around her or her situation. She doesn’t want the pressure of always having to be the decider or the sense that everyone (Dan, family, friends) is constantly deferring to her wishes. She doesn’t always want to be on the spot for making a choice or offering her opinion first. She craves a return to some sort of normalcy in our life including how decisions get made.  And of course this all makes sense. It’s not good for our relationship for Cassie’s opinion to always dominate so we need to find better ways of balancing her cancer and our decisions.

This played out in real time with some friends recently (pre-stay at home order) when we had a full day planned and had to decide whether to curtail it some. We all instinctively turned to Cassie and asked her what she wanted to do? But she helped guide us through an alternative approach. She gently said “I don’t want this to be all about me so why don’t we all share what we are thinking and then we can decide.” So we did and we did. It was still pretty stilted because once the idea of stopping sooner or resting more is “out there” it can easily take on a life of its own but we still tried to come to a decision as a group without either automatically deferring to Cassie or centering her situation above all else. For Dan it was a valuable lesson in navigating choices with cancer and trying to keep decision-making as normal as possible.

It isn’t easy because even while craving a return to normalcy in our lives we both recognize that nothing will ever be normal again. Cassie does have metastatic breast cancer — full stop. Everything has changed. And that was before Coronavius hit. Now “normal” feels even more like a mirage. We are all going to have to adjust to a new normal and that includes figuring out how to make decisions through the lens of both MBC and an ongoing pandemic.

For us, that has meant trying to distinguish between big decisions and the many more routine choices that we have to make all the time. A potential (maybe obvious?) guideline that we are now playing with is: The bigger the decision the more it’s informed by Cassie’s cancer. The converse is also true. So for the countless daily, weekly or social decisions that arise we will attempt to treat them as “normally” as possible without centering Cassie’s diagnosis. But for bigger decisions it will be more of a factor.

That’s how we ultimately decided to stay in California. One of us was going to be disappointed by the decision. If we picked up and went home it would be Cassie. If we stayed – Dan. In this case, because we were already here and because we don’t know how Cassie’s illness will progress or whether we will ever make it back we decided to stay. Looking at it through that lens felt right for both of us and Dan has actually been able to let go of a lot of his anxiety simply by seeing how much being here means to Cassie. It was a good choice and it taught us a lot about the challenges of making decisions with cancer. 

Since we’ve been in quarantine we’ve started to exercise at home. We walk a lot — so much that Doc the Basset Hound frequently stops, lies down on the sidewalk and glares at us. We’ve also been using the Peloton app. We had previously thought it was just for biking but we discovered that you can do cardio, body-weight strength classes, yoga and even meditation (though we haven’t advanced past five minutes for those yet). 

In the middle of one recent class, our instructor, with an eye towards motivation, exclaimed something like: “Make the most of this moment because you can’t get it back — time is NOT a renewable resource.” That throw away comment struck us both in the moment and we’ve returned to it often since.

Time is not a renewable resource. So simple and yet kinda profound. Upon reflection, we both think that until Cassie got sick we had often treated time like it was renewable. Sure we tried to be intentional (and were getting more so as we got older) but often days and weeks would just fly by without our giving real thought to what we were doing and why. We would often over schedule ourselves and become more focused on getting everything done than enjoying what we were doing. Occasionally we would realize how fast we were moving or how busy we were and try to re-calibrate. Mostly though we just kept going because we just assumed we had enough time to do everything we wanted. If we were too busy this week we’d do it next week. If we didn’t get to it this year there was always next year.

Then Cassie was diagnosed with metastatic breast cancer. While it varies greatly by person, the five year survival rate is just 22%. Less than a quarter of people with this disease will live beyond five years post diagnosis. Even with all of our doctor’s caveats, that statistic slapped us in the face. It also changed how we started thinking about time — it really is precious or in the words of our Peloton instructor it’s nonrenewable. We identified a set of personal “buckets” to help us focus and prioritize our time (for more on what those are, see our 3/21/19 blog post) and we are making different choices than we were before. Our relationship with time has changed. 

And now along comes Coronavirus and once again life as we (and everybody) know it has changed. One day bleeds into the other. Weekends mean less. Time feels different. And Cassie in particular can’t help thinking about the fact that she only has limited time left and some (much?) of that is likely going to be spent in isolation not doing the things we had planned. Not seeing the people we love.  Not taking advantage of the energy she has now but won’t have later. What if this is the last time we ever get to come to Napa (our happy place) and we just spent most of it indoors?  What if we don’t get to see our friends and families for months? What if Cassie begins to decline next year and this, her last “good” year, was largely spent in isolation? These are impossible questions with no real answers but this week they’ve resulted in a lot of tears and a lot more thinking about how we maximize our time no matter the circumstance.  Can we stop thinking about this as lost time and somehow re-frame it as found time for the two of us as a couple? That still feels hard but probably worth trying. 

Oh yeah and we are also setting a strict daily step limit for Doc so he stops glaring at us. How he uses his time matters too.