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Having cancer is stressful. Not just the physical aspect, but the emotional and social aspects, too. 

Every party or outing we go to we think about who else will be there. Do they know our situation? How much or how little? Do we share the diagnosis or not? Do we have the energy for the “talk?” Mostly though we try to prepare for the inevitable question: “How are you?” 

Given how often this comes up and our professional backgrounds we have talked about developing our own cancer “elevator speech” (we have heard from others in our situation that they have done that) but haven’t done it yet because it’s actually pretty challenging. How do we best communicate how hard living with metastatic breast cancer is but also that we are doing as well as we can? We have shitty days. We cry. We question. We stay in bed with the covers over our heads. But, we also laugh, enjoy each other and our friends and family, take on new adventures and think about what new restaurants we want to try next.   

We’re finding how these conversations go just depends. It depends on how well we know the person and what we know they know about where we are in life. Cassie’s desire to tell every single person (like the person who owns the boutique she likes, the yoga instructor, and the manager at a restaurant we love) has subsided as the disease has become a more regular part of our lives instead of this piece of shocking news. But there is the question of authenticity. How can we best genuinely share where and how we are without taking every conversation down a long dark path? 

For us, we think about “how we are doing” on both a large or more macro scale and on a smaller or day-to-day scale. On the macro scale we are heartbroken, terrified, overwhelmed and incredibly sad almost all of the time. On the smaller, more day-to-day scale, we are often okay – which might mean we’ve slept well, gotten a workout in, are experiencing limited physical side effects and are looking forward to tomorrow. Another day we might be really struggling – haven’t slept well, experiencing side effects from the medication, and are feeling very emotional and like our lives are stuck or too small. We can have good days and bad days within the larger ugly context of metastatic breast cancer. We can be both okay and not okay at the same time depending on the scale or lens we are using to answer the question.

Another part of this is that we are learning about the importance of regularly checking in with each other on the related question of “how we are doing.” As a couple. Are we connected? Are we focusing enough on our buckets? Are we helping each other slow down? Are we in sync? This requires a degree of intentionality that we both find enormously challenging but that we are coming to realize more and more is absolutely essential. We can both be doing all right as individuals but not as well as a couple so we have to ask and answer the question both ways.

After losing her husband, Sheryl Sandberg talked about how jarring she found it when people asked how she was doing. She suggests re-framing the question from “How are you?” to “How are you today?” While we can’t, and really don’t want to, have a say over what people ask us, we can take control over how we answer the question. Today, we are okay.

The one year anniversary of Cassie’s MBC diagnosis is today, July 13. In some ways, we can’t believe a year has gone by. In other ways, we can’t believe it’s only been a year.

Reflecting on the past year is difficult. We still cry every time we start to think about where we’ve been, what we’ve lost and what is ahead. So we’re keeping this post simple. To mark July 13 and this anniversary (cancerversary) that we wish we didn’t have to acknowledge, here are 13 things we’ve learned over the last year.

13. It’s best to have difficult conversations at a brewery.

12. More than one night apart from each other is too many.

11. MBC is relentless. 

10. Slowing down and being intentional about every day is super hard for us.

9. MBC research is underfunded. Less than 10% of all money raised in support of breast cancer research goes toward a cure for metastatic breast cancer. 

8. How we see ourselves in the world is changing. 

7. Cassie can nap. Really.

6. A good therapist is key.

5. As shitty as this all is, we are so grateful to have good insurance, great care and flexibility with work because so many people don’t.

4. Our support network is deep and wide.

3. We’ve got to be patient with each other.

2. We can be okay and not okay at the same time.

1. Our love is very strong

Almost immediately following Cassie’s Stage IV metastatic breast cancer diagnosis, she started thinking about her death. Not so much “is there a heaven and hell” but more logistics – like will she be cremated? Buried? What will the memorial service be like? What music will we have? How do we reconcile our different religions? What will her obituary say?  

It turns out that Cassie has been focused on her own funeral since junior high. She still has a sketched-out version of her funeral program that she did in 7th or 8th grade. (So, to her friends from Cotter Junior High, she is officially rescinding your pallbearer invitations. Sorry.) And, Cassie’s mom told her that many years ago she had selected scripture readings for her funeral that she had written out and given to her for safekeeping. So to Kay, we should probably get those back. 

To Dan though, this all seemed way too soon and way too sad to think about. He knew we were going to have to talk about it at some point, and plan it all out eventually, but to him that meant later. In a few years. Certainly not so soon after the diagnosis.

Conversely, Cassie realized that her fixation on the details of death, while upsetting to Dan and probably unnerving to friends, actually gave her a much needed sense of control. So much about the illness was (and still is) beyond our control, but this wasn’t. And Cassie is an organizer and a planner and planning for her own death felt aligned with her natural tendencies and strengths. 

This was one of the first times where we saw things really differently. 

So knowing how important this was to Cassie, we came up with a compromise, which like many other things in our lives right now was developed with a heavy dose of dark humor. Here’s the deal we made with each other. We would start talking about the end of life issues but we would always have the conversations at a brewery to take some of the edge off. It’s not a perfect solution by any means but it makes the hard conversations just a little easier.

As we started talking about end of life plans other differences emerged. Dan expressed his desire to have Cassie buried. Cassie felt strongly about being cremated. So, we decided she’d be cremated and then buried. We toured a couple of cemeteries. Cassie is Catholic and Dan is Jewish so it is important for us to find a cemetery that is non-denominational and welcoming for both of us. We also want something near St Paul and easy to get to. 

(Here’s a tip – when you’re just trying to get a feel of a cemetery, don’t make an appointment. Just drive or walk around. Check out the grounds and views. See how it feels. For the first place we visited we made the mistake of making an appointment. The cemetery man was akin to the worst car salesman you’ve ever met. “What can I do to get you to buy a cemetery plot today? I can talk to my manager and get you 20% off.”  Seriously it could have been a f***ing SNL sketch. We spent the entire time kicking each other under the table and suppressing giggles.) 

We talked about funeral music, where we might have the service, and whether or not Dan could do a version of a Shivah at our home. We talked about our religious differences. Cassie had preliminary discussions with her parents about their thoughts (not an easy conversation but none of this is and they were awesome, by the way) and we even talked to two potential officiants. 

Then Cassie slowed her roll. As she became more settled into her illness and into how to live with metastatic breast cancer she feels less of the need to focus on end of life planning. But then something strange happened — we reversed roles after Dan’s mom died. Seeing how suddenly Dan’s mom’s health deteriorated and how she went from being fine to not being able to answer even the simplest of questions Dan became terrified that the same might happen to Cassie at some point. Not likely but possible. So now Dan feels some urgency to dive into more of the death details.

All of this has made us realize how we have to be open to each other’s timelines and evolving priorities. Nothing about this can ever really be written in stone. There is no right way or time to discuss any of this. We both just have to commit to communicating about what’s important to us and when — even if that changes often. So now, having recognized all that, we are proceeding — not at a crazy pace but we are letting ourselves go there and think and talk about the end when either of us needs to. And we still try to do it at a brewery.

When Cassie was diagnosed there was so much we didn’t know about metastatic breast cancer. Since then, we have often found ourselves facing a common set of questions and/or misconceptions so we thought it might be helpful to share some basic facts.

What is metastatic breast cancer?

MBC, also known as Stage IV, is breast cancer that has spread to other parts of the body–most commonly to the bones, liver, brain and lungs.

But if it is in your lungs, isn’t it lung cancer?

No. It is breast cancer in the lungs. It is not considered lung cancer.

How did it go from the breast to your lungs?

Most likely, it traveled through the bloodstream to create tumors in the lungs.

When will Cassie be finished with treatment?

Unfortunately never. While treatable, MBC cannot be cured. Scans, blood tests, and treatments will be ongoing. The goal of the treatment is to stabilize the disease — prevent the cancer from growing and spreading to other parts of the body and to prolong life. Once a treatment stops working (i.e., the cancer grows or spreads) the oncologist will switch Cassie to another type of treatment. This will go on until all viable treatment options have been exhausted.

What is the prognosis?

Some people with MBC live for a long time. We’ve read about women living for ten years! New treatments are being developed all the time. One of the drugs Cassie is taking is relatively new and the impact on survival rates is not yet known but appears positive. However, current general stats say the five year survival rate for stage IV breast cancer is 22%; median survival is three years.

But Cassie looks healthy. How is this possible?

Cassie’s current treatment doesn’t have visible side effects. But, please know that just because she looks normal doesn’t mean she feels well.

If Cassie fights really hard and stays strong, she’ll beat this, right? She is a survivor.

There is no cure for MBC. No matter how hard she “fights” or how positive her attitude this disease will kill her. Just the fact of the matter. We’re trying to stay away from referring to this illness as a battle or a fight as that language suggests that if one fights hard enough the cancer can be defeated. It just doesn’t work like that.

What else should you know? We found this video (https://youtu.be/QDQ0FjP7J-c) done by an MBC patient (who has since died) to be very helpful in wrapping our heads around the disease and some of the common perceptions and misconceptions that arise. Check it out but be warned it’s pretty emotional.

In the weeks following Cassie’s diagnosis we got lots of advice. We weren’t in a position to hear most of it as we were just trying to come to grips with the situation in which we suddenly found ourselves. Brief aside: if you wind up knowing other people who receive a similar late-stage cancer diagnosis hold onto your advice for a while. It’s not that its unwelcome, it’s that you can’t process much of anything those first few weeks.

One thing that did break through though was a breakfast conversation that Dan had with his friend Paul who shared an insight from another friend who had an advanced cancer. That friend advised “don’t make a bucket list because if you do then you are living to die.” This was super interesting to us because we had, in fact, just started a bucket list of things we wanted to do in the time we had left together. But instead we paused and thought about it some more.

On the one hand we totally understood why so many people make a bucket list — it makes all the sense in the world. At the same time, the advice resonated because what happens when you have checked off everything on the list? What then? We found that neither of us wanted to face that question so instead we asked ourselves some other questions. If we don’t want to live to die then what does it look like to live fully right now? How do we spend our time? What matters most? What’s our purpose?

So, one day with all these questions in mind, we sat down at our dining room table with a big piece of paper and together made a list of all of the things that “feed our souls.” The things that make us happy and the things that now seem most important. It was a long list (which was nice) so since both of us are strategists at heart we decided to “bucket” it into categories.

We came up with 13 buckets (something symbolic there since Cassie was diagnosed on Friday the 13th). They included things like time with family and friends, reading, movies and games, food, cooking and wine, exploring new things, and travel. They are not all “buckets of fun” because we included other things like house projects and end of life planning. Some are more important to Cassie, some to Dan, but all of them reflect what feels most nurturing and essential to us as a couple.

And we’ve started to use the buckets. To plan our weeks. To make decisions about what we want to do. To help us prioritize and say no to things. We look at them all the time. We talk about them. Refer to them by name. We fill them up with specific activities. Three of them (connection, health and reflection) we try — with limited success — to do every day. We’ve refined them. Added some and lost others. The point isn’t to have a list but rather to have a better sense of what matters most to each of us and to both of us.

Even before Cassie was diagnosed, we were trying to be more intentional about using our time. That probably made our bucket exercise easier because we weren’t starting from scratch. Our challenge before, though, was that we frequently found ourselves so busy that we lost sight of what mattered most. We don’t have that luxury anymore because every day really matters. That’s why we love our buckets and don’t have a bucket list.

We walked into the oncologist’s office knowing that Cassie had cancer again. Our care coordinator had told us that the appointment, scheduled for a few days after the biopsy, would be cancelled if cancer wasn’t found. The cancellation call never came as much as we had jumped up every time the phone rang. So we knew.  But we still hoped that things would be ok.

That had long been our mantra whenever one of us was facing a tough day or week or a particular life crisis. The one of us who was struggling would turn to the other and say: “Everything is going to be ok, right?” And it usually was. Even when Cassie was first diagnosed with early stage breast cancer 16 years ago. We would work or fight through the situation together. Support each other. Remain optimistic. Remind each other that things were going to turn out ok.

Then, on Friday, July 13 2018, the doctor told us that Cassie has metastatic breast cancer. We had different understandings of what that meant but Dr. Leach clarified it succinctly. Metastatic means that it has spread. It’s automatically “Stage IV” (Dan naively or hopefully asked if there was another stage after that but the doctor just shook his head). It’s “treatable but not curable.” And finally, we probably shouldn’t plan on more than five or six years though he naturally caveated the shit out of that prognosis.

There we were. In shock. Looking at each other dumbstruck. Cassie had to go have more tests. Dan had to call our families. And then as we drove home Cassie said it: “Honey, things are not going to be ok.”

She’s right of course. Unless things change there is no good outcome for women with MBC. So what we are now trying to figure out is how do you live fully and full of love when you know things aren’t ok? That our time together is going to end way sooner than we want, that our days, weeks and years will likely be filled with sadness, grief and trauma, and all of that is on top of Cassie feeling exhausted and crappy. How do we live like this? How do we stay true to our values? Can we find joy in the sadness? What stays the same? What changes? All big questions and all emerged over the weeks that followed the diagnosis.

That day though we were consumed with only one question — how do we share this news and with whom? Cassie is super private. Dan not so much. Dan is on social media. Cassie not so much. Dan wanted to share with the world. Cassie with as few as people as possible. We resolved this by sending an email to our family and close friends and in subsequent weeks we shared a little more widely. Word got out. People now know — though we each still bump into friends whom, to our great chagrin, we forgot to tell. And, if you are one of them and reading this we are really sorry.

What became clear right away is that we had pretty different views on communicating about the cancer and its impact on our lives and that we had to reconcile those differences. Now on the one hand this is not a unique situation. All couples have to bridge disagreements and we’ve been doing that for twenty-plus years. On the other hand, a metastatic cancer diagnosis changes everything including how you communicate, solve problems and navigate differences. We think about the cancer differently. We think about life (and death) differently. We process Cassie being sick differently. And what we’ve found is that there are not a lot of resources to help us navigate all of this as a couple. There is a lot of support available for Cassie as a cancer patient and a lot of guidance for Dan as a caregiver but not a lot of help on how to do this together.

So we decided to start writing. To share our experiences. To get out of our heads. To help us process all this as a couple. We totally get that within the context of a horrible diagnosis we are fortunate to have time, space, resources and flexibility to reflect on all of this, talk it through, and try to find meaning where we can. We are grateful for that and we hope that by sharing some of what we are going through we can pay it forward.

Maybe that’s how we make today OK.