Blog

Aug 24
9

Death Plan

By | Blog

Observation One:  We are planners. Both of us. We like order, clarity, direction and very few things get us as excited as a detailed timeline or a successful couples “scheduling meeting” where we plot out the days and weeks ahead. 

Observation Two: Since Cassie’s metastatic breast cancer diagnosis we’ve both become a little consumed by death. How can you not when the median five year survival rate is less than 30% and you’ve been told probably not to expect more than 5-6 years? We’ve written about this before in a 7/2/19 post titled “A Focus on the End” and more recently in December 2019 in a post called “A Rabbi, A Death Doula and Mr. Rogers.” 

When you combine these two observations it might be natural to think, as we did, that creating a “death plan” for Cassie wouldn’t be that much of a challenge for us. Sure, we knew intuitively that it wasn’t going to be easy because talking about death is one of the furthest things from easy that you can imagine. However, at the same time, we thought that once we had accepted the importance and value of death planning we would just get it done. We were wrong.

We waited, procrastinated, avoided it and then finally gave ourselves a deadline. Then we blew right by it. One of us as a time would remind the other and we would commit anew, only to revert to procrastination mode. Then one day it was done. Cassie sat down and batted it out. She created a Google doc and just started writing. Afterwards, she told Dan that it was done and we scheduled time to go over it together. And waited and delayed and rescheduled and rescheduled again. Dan was scared and sad. He didn’t want to see what Cassie had written even though he knew it was important. Cassie wanted to share what she had come up with but also really understood Dan’s hesitation. As we’ve said before, this shit is hard.

And then we did it. We sat down together while we were in California on a nice, warm sunny day (that helped) and talked it through. First, though, we agreed that it was very much a draft plan AND that even though it was Cassie’s death plan it had to “feel right” for both of us. We talked in advance about how something might feel right to Cassie but not to Dan and agreed to be patient with each other and really try to listen and hear what the other was saying. It’s complicated because of course the wishes of the person dying (or who you think will die first) matter most, but it’s the other person who will be experiencing the results of the plan — being bedside in the final days, reading the obituary, sitting through the funeral, greeting friends and family. Like many (most) things in marriage it had to work for both of us. 

It turned out the dreading and procrastinating was probably the hardest part. Dan looked at what Cassie drafted and asked a bunch of questions. We explored different possibilities, clarified a number of things and made some changes. Then we hit save and it was done. We decided to sit on it for a while and then give it another look before “locking it down” which we have now done. That said, we also agreed that we can revisit it over time as Cassie’s cancer progresses but for now at least we can rest more easily knowing that we have answered a lot of the big questions … for Cassie. 

You see, we’ve also agreed that we should now do the same thing for Dan even though he doesn’t have a terminal illness. When Dan’s dad and mom died one of the few things that made those sad days easier was that they had shared some of their wishes in advance. The death doulas who led the community education class we took late last year made the same point — you might not get the death you want but you certainly won’t get it if you don’t plan for it and instead leave everything to chance. 

So Dan’s plan is next up. To make that a little easier we took the questions we answered for Cassie (many of which came from our death doula class) and created a little planning worksheet (see observation one above). We’ve attached it to this post below in case it might prove helpful for anyone else who wants to tackle a death plan BUT we want to really emphasize that we are not experts nor trying to tell anyone what they should do. ( Death Plan Work Sheet.August 2020.) These are simply the main questions we asked ourselves as we contemplated Cassie’s death and that we will now wrestle with again as Dan creates his plan. That is after we finish the current round of waits, delays and procrastination. 

Jul 31
9

Dance Moves

By | Blog

Before we got married we took dance lessons. From a local Arthur Murray studio. Private lessons because, at that time, there was no way in hell Dan was going to learn to dance in a group setting. Cassie loved the lessons. Dan hated them. And he didn’t hide it. Often he would “escape” to the bathroom for a break and Cassie would end up apologizing to the instructor for Dan’s grumpiness. The instructor, who was really good-natured through all of this, suggested we learn the basic dances – foxtrot, swing, waltz – over eight or so lessons. However, at our first lesson, Dan declared he only needed to learn one dance. The one that would best fit the song we had chosen for our first dance as a married couple. One dance only. In Dan’s mind, there was no reason to learn other dances when the sole purpose of these lessons was to get us prepped for the one big dance.

We share this because recently, at a socially distant dinner with friends in our backyard, we were discussing how families change when a kid goes off to college. One person said that when her oldest left it was “like the rest of the family had to learn a new dance.”  Before that, everyone knew their dance steps – their role in the family, But, when one family member was no longer home, they all had to adjust. Learn new steps, a new rhythm, a whole new dance. 

Cancer has forced us to learn a new dance. The music has changed at our house. We’ve each been required to take on different roles and to approach our lives differently — individually and as a couple.

Dan has become a caregiver. Cassie has become (or is trying to become!) a “caregetter.”  Cassie’s new moves include patience, asking for and accepting help (the accepting part is an exceedingly complex and difficult dance step). She has had to practice doing less and sharing more which, for an intensely private person, is like learning to dance without any music. Dan’s had to learn to notice and do more, read Cassie’s energy level and he too has had to practice asking for help and support from friends and family which for him is also not a natural move. New communications challenges have also emerged. Dan is learning (duh) that he can’t encourage Cassie to let him do more and then be resentful when she does. Cassie has had to work on not taking her anger at the cancer out on Dan. New moves abound.

So how do you learn new dances on the fly with no lessons? While we both have received valuable support in our new roles thanks to Firefly Sisterhood and Jack’s Caregiver Coalition, we are finding out that we mostly have to teach ourselves. Try on these new roles. Plan new activities and don’t abandon them right away if they feel a little awkward. Stumble through uncomfortable exchanges and conversations. As we navigate living with metastatic breast cancer, we are learning to dance all over again and this time it’s not just for one song — it’s for our entire lives.

Jul 13
14

Cancer. I’m against it.

By | Blog

Cancer. I’m against it. 

Today is the two year anniversary of my diagnosis and I am acutely aware of the impact metastatic breast cancer has had on my life. All that has been lost. All that has been taken away. All that is different. I’ve been encouraged by friends to be more open and explicitly share the challenges of living with MBC. So on this anniversary, I’m going to give it a try. This level of sharing doesn’t feel natural, but as Dan and my therapist say, it’s probably good for me.  

Cancer makes me feel less than myself. Simply put, I just don’t have the physical and emotional energy I used to have. 

My cancer scares those who love me.   

Cancer removes unadulterated joy. Things just aren’t as fun as they used to be. The cancer cloud hangs over everything. Sure, I can still have fun but things aren’t as light and carefree as they once were. 

Cancer has changed my relationships with my husband, friends and family. Dan and I have adopted different roles in our marriage. Friendships feel different with the overlay of cancer. People are more cautious and solicitous around me. Not all bad. Just very different.    

Cancer makes the future something I don’t look forward to. How could I? I know that this disease will likely kill me and I know the stories of how other women have died from this disease. It is scary, painful and sad. Imagining my life even three years from now is challenging.

Cancer negatively impacts holidays and special times. Even before a holiday or special event I find myself worrying about what feelings will come up for me. Will I get emotional? Will I compare this event to a similar event pre-cancer? Will this be the last time I get to do or experience something? 

Cancer prevents me from trusting my body. Every ache and pain causes alarm. Has the cancer spread? Or, is it just that I’m over 50? If I ignore a new pain am I being stupid and irresponsible? If I act on every new pain am I a hypochondriac? 

Nancy Stordahl (@nancyspoint), one of the bloggers I follow, wrote a memoir “Cancer Was Not a Gift and It Didn’t Make Me a Better Person” and I couldn’t agree more. The relentless nature of metastatic breast cancer is exhausting and all consuming. But, I am committed to living as fully as I can for as long I can. I have much to be grateful for in my life overall but today, on the second anniversary of my diagnosis, I am far more sad and mad about how my life has changed. 

Cancer. I’m against it.

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 27
12

Hope IS a Strategy

By | Blog

I don’t know the first time I heard the expression “Hope isn’t a strategy” but I have certainly quoted it a number of times over the years. Usually it is something I’ve said to a client or a campaign I was advising as a way to make the case that we needed a plan or a more focused set of goals, priorities and tactics. It would usually engender a laugh and was a good way to provoke discussion. 

Last week though, I found myself saying the exact opposite. I was talking to some fellow cancer-caregivers and we were all discussing how scared, anxious and overwhelmed we were by the current situation. Now not only do our spouses/partners have cancer but they are also at heightened risk of getting Covid-19 and while that is scary for everyone it is especially frightening for those who already have severely compromised immune systems.

So we talked about our fears and all the plans in our lives that have changed. The fear of even stepping into a store because it might result in infection and god-forbid an even earlier death of our loved one. The “bucket-list” trips that people are cancelling without knowing if they will ever get to take them. The sadness and loneliness of not being able to accompany our partners to the doctor. How do you process all of this? How do you not have it overwhelm you?

That’s when I found myself saying: “Maybe hope is a strategy.” It immediately rang true because for me and others in this situation it is actually the only thing we have. Cassie was feeling awful the other day (almost couldn’t get out of bed) and really the only thing I could do was hope that she would feel better the next day. I hope all of the time that new medicines will be discovered. I hope that we have more time together. I’m encouraging us to make future plans and hope we can follow-through on them. I hope that I won’t wake up crushingly sad, or if I do, that I can hopefully find something that day to put a smile on my face. 

And now, in the middle of this new scary pandemic, I am finding that for me hope is more important than ever. There is so much fear, so much I am angry about. So many injustices and so many unknowns. The only way I can handle it all is through the hope of better days ahead. Hope that we will learn from this and act accordingly. Hope that suffering will be less than predicted. 

So I guess hope can be a strategy and I’m embracing it as I face both cancer and Coronavirus.

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. 

  • Home
  • About
  • Blog
  • Subscribe

    • Mailing list