Blog

Jul 08
6

Worrying About Worrying

By | Blog

Married couples worry about one another. That’s part of the deal. The person you love most in the world is often on your mind and you are on theirs. 

Before Cassie’s diagnosis you could probably best describe our mutual worrying as “situational” in nature. If one of us had a big meeting or deadline at work the other shared the anxiety. If either of us was feeling crappy the other’s sense of concern was evident. Cassie would worry about Dan’s possibly unhealthy attachment to the characters in Game of Thrones. Dan would worry about Cassie eating popcorn (and only popcorn) for dinner when he traveled. Worrying for each other was a part of our life but only a small part.

Not anymore.

Now Dan worries about Cassie all the time. The past weeks she has had far less energy than normal and there is nothing he can do other than worry. Her vision has recently become a little blurry — it’s probably eye related but it sparks massive worry about a brain metastasis. Cassie’s sad, Dan worries. Cassie cries, more worry. A fun upcoming event sparks worry about energy levels. After the event there are new worries about not having something to look forward to. Cassie’s friends not checking-in enough, that’s worrisome. Friends calling too often, a different worry (sorry friends you can’t win). How do we fill our time? That’s a big worry. What if something we planned doesn’t feel as joyful or fun as we expected? Now add in Coronavirus, greater isolation, Trump and open questions about whether we as a country will seize this movement moment on racism and it feels like worry, on top of worry, on top of worry.

And it’s not just Dan who worries. Cassie is constantly concerned about how much Dan is taking on. She worries that she is not doing her share and that he will grow resentful. Cassie worries when Dan is quieter than usual then worries more about whether to say something about it. Cassie worries constantly about what the future holds even as she recognizes we have little control over it. She worries about every new ache or pain and whether to call the doctor or wait and see. She worries about Dan’s mental state, sense of loneliness and how we can best stay connected. 

This isn’t situational worrying anymore it’s more like universal worrying and it can be suffocating. We are also pretty sure that this near constant and mutual worrying isn’t particularly healthy for our relationship. The other day after an emotional back and forth about what was worrying each of us, Cassie noted: “I can see why so many couples who go through this wind up getting divorced.” That’s not remotely our situation but it’s a relevant observation. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is six times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men. The constant worrying, the need for even better communication, the changes in our roles and relationship and the unrelenting nature of it all. This shit is hard. 

We are trying to get better at interrupting the constant voices of worry that fill our heads without minimizing the challenges in our life. We are also trying to figure out how to better raise these topics with each other. It can be hard to hear each other’s fears and concerns without reacting defensively, especially when these have to do with how we are showing up. Dan can get angry when Cassie points out he has lower energy than usual and Cassie understandably can get really frustrated when she feels like Dan is judging her self-care. 

Navigating all of this worrying is really complicated. What we are learning is that like most everything else related to metastatic breast cancer, we need to be patient and gentle with each other. It seems like the goal isn’t to stop worrying (which would be impossible) but to try and not let worry consume our days. We also see that we need to better share the weight of our worries rather than each continuing to try and carry them alone. And on the up side, Game of Thrones isn’t on anymore and Dan isn’t traveling so no more popcorn dinners — it’s nice when at least some worries get resolved. 

Jun 24
8

Of Bumps and Earthquakes

By | Blog

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. 

May 21
7

Uncertainty Meets Uncertainty

By | Blog

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. 

May 05
6

Last Time. Last Time?

By | Blog

The first time we visited Napa was in 2006. It was a 60th birthday present for Cassie’s mom and for us and Cassie’s parents it was the trip of a lifetime. It has also become our (and especially Cassie’s) happy place. We’ve been back almost every year since — sometimes more than once a year — and this spring represented our third extended stay in the valley. 

We love it here. The food. The wine. The pace. The history. The mountains. The people. The small towns. The breakfast burritos. The scenery. All of it. And we know how lucky and privileged we are to get to spend so much time here and we don’t, for a second, take that for granted. 

For us, like everybody else, the last ten weeks were not what we expected. We had big ambitions for our Napa time with lots of visitors and activities planned. After our first ten days that all changed, and we discovered that we could easily slip into one of two unhelpful mindsets. We could compare this time to our last time(s) here and bemoan how different it is. Alternatively, we could become obsessed with the fact that this might be our last time here given Cassie’s metastatic breast cancer diagnosis. Who knows how she will feel a year from now. What if we never come back? What if this is our last time? 

Last time. Last time? Twin traps. One rooted in past comparisons. The other in future fears. The challenge we found is to stay rooted in this time because it actually is the only thing we get to control. And that’s not just about this ten weeks in California — it’s relevant to every aspect of our lives now. Are we going to spend our remaining and possibly severely limited time together wistfully looking back or in constant fear of what is to come or can we try to stay connected to each other and to each day? Honestly this is super hard for us but we have found that usually one of us at a time can stay more rooted in the now and help the other get there. We do that for each other constantly and it’s helping make this time, right now, some of the richest most connected time of our twenty-eight year relationship.  

Apr 19
8

Decision Making with Cancer

By | Blog

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. 

 

Apr 13
6

Time in the Age of Coronavirus

By | Blog

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. 

Apr 01
4

Warning: Coyotes Ahead

By | Blog

Neither of us are all that into Astrology but that doesn’t mean we aren’t open to signs. Everyday we encounter signs. But, do we follow them or decide to ignore what they tell us? Doc and Cassie recently stumbled on this sign during a walk.

They heeded the warning and turned around.

Living with a terminal cancer diagnosis and being their caregiver both require expert “sign-reading” skills. For the care-getter: How do my actions translate into how I feel physically? How does the way I feel today compare to previous days/months? What things make me more emotionally healthy? For the caregiver it’s heeding signs about self-care even as you worry more about your partner. It’s also being constantly aware of how your loved one is feeling and when to offer your thoughts and opinions about their life, actions and decisions — these are especially tricky signs to read.

In this time of staying at home and living life much differently than we used to (even after the cancer diagnosis), we are both seeing signs. For the most part, Cassie is feeling well — some days even than when we were home. We’re taking this as a sign that a slower, more relaxed pace is beneficial. Cassie’s joints hurt less. This sign points to the benefits of single level living and lots of walks. She’s also sleeping better. Maybe the dog is not allowed to sleep with us when we get home? And despite the worry about Covid-19, she is feeling less stressed generally — we’re not sure what this sign is! 

For Dan less social media and news has resulted in far less anxiety (maybe that stays). Truly limiting work to dedicated days/hours has resulted in greater presence at non-work times (can he continue this discipline?)

What part of this slower, pared down life works for us? Are there things from this time that we want to carry forward after the quarantine is lifted? Is it possible for us to move out of quarantine time and continue to have fewer expectations for ourselves? Can we move forward with a priority on taking walks, napping, reading and playing cards? 

How do we read these signs and apply the messages moving forward? 

PS: Here some other signs we’ve recently seen and appreciated.

PPS: Cassie is a Taurus and Dan a Libra, in case you’re curious. 

Mar 25
6

Social Distancing From the News

By | Blog

When Cassie was first diagnosed with metastatic breast cancer 19 months ago our lives were turned upside down. We were scared and overwhelmed. We didn’t know what to do or where to turn. We woke up anxious and went to bed the same way. We didn’t sleep. Our normal routines were upended. We were consumed by fear and uncertainty. Sound familiar?

Everything that we felt then has come rushing back these past weeks. It has reminded us that one of the first things we did when Cassie was diagnosed was to try to reduce other things that were causing anxiety in our lives. Primary among those was the daily onslaught of news and (for Dan) social media. We have both always been avid consumers of current events — reading multiple papers daily, staying engaged and using our I-pads and phones to check the news throughout the day. 

After we found out that Cassie was sick we pulled way back. Dan got off social media altogether, we limited our news consumption to once a day and we focused on connecting with each other and trying to address the new and extreme anxiety that cancer had brought into our lives. Being less obsessive with following and tracking the news helped — a lot.  We settled into our new normal and while we remain engaged with external events it was to a far lesser degree than we had previously.

As the months progressed, we resumed our historic patterns but then Coronavirus hit. Given Cassie’s compromised immune system and being far away from our support system, we’ve both been filled with extreme anxiety (Dan more than Cassie, actually.) So we decided to again limit our news consumption to once a day. That allows us to still track what’s going on but to otherwise disconnect from seeing the same scary news over and over again.  “Breaking” news isn’t really breaking all that much anymore. Instead it’s the same information repackaged across different sites and under different headlines. We can easily learn what we need by checking once a day and use our found time to focus on things that are less anxiety producing whether that’s taking a walk, a new book, TV series or a game. 

To be clear, disconnecting from the news wasn’t easy for us nineteen months ago and it’s not easy now. We have to (gently) remind each other constantly. But, desperate times call for desperate measures and we hope that social distancing from the news will flatten our anxiety curve.

Mar 18
6

Keeping Spirits Up

By | 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.

Mar 16
7

Anxiety of the Moment

By | Blog

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.

  • Home
  • About
  • Blog
  • Subscribe

    • Mailing list