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Spoiler Alert: This story has a happy ending.

So about two weeks after Dan’s mom died we got some potentially scary news about Cassie’s health. She’d just had a routine doctor’s appointment. So routine that she hadn’t even wanted Dan to attend (a first). No scans. No test results. Just some blood work and a short visit with the doctor. Purely routine.

Then they called. Cassie’s blood work had come back. Her kidney counts were way off — her creatinine levels were elevated much higher than they should have been. They told her not to panic (thanks) and that it might just be that Cassie was dehydrated at the time of the tests. They instructed her to drink a lot of water, lay off Ibuprofen and come back in a week to be re-tested. 

Left unsaid was that it might not be alright. That this might be the start of something new. Something bad. That maybe we should panic. The internet is not your friend at times like this. You know there’s that joke that if you look up an illness online you are always “three clicks from death.” Well that’s not as funny when you have metastatic breast cancer. When Cassie googled high kidney counts and MBC much of what came back was really scary. Some people do develop kidney trouble — not good. Sometimes that’s caused by the meds — also not good because we want to stay on these meds as long as possible. 

We started joking darkly about kidney failure. Visions of dialysis ran through our heads. It was too much, but what could we do? Cassie started a “water project” of at least 64 oz daily. She avoided intense workouts and rested more. We also told a lot of people because we were scared and this was our current reality.

And then everything was fine. We went back to the doctor (together this time). They did the test and asked us to stay for the results. We sat anxiously in the waiting room and then Cassie’s nurse came out and gave us the all clear. Probably just dehydrated she said. Keep drinking water. Nothing to look at here.

Whew, what a relief. But also what a ride. A true roller coaster of a week and certainly not the last one by a long shot. That got us thinking how do we handle these rides? How do we react but not over-react? How much do we share, when and with whom? We don’t want to shut out our family and friends but we also don’t want to scare them unnecessarily. Also how do we incorporate these regular ups and downs into our life as a couple? One of the things that is becoming increasingly clear to both of us is that as much as we ever thought we were “in control” of our lives before, we certainly aren’t any more. In so many ways, the MBC roller coaster is in control and we are just along for the ride. That doesn’t mean we don’t have lots we still get to decide on a daily basis, but it does mean that almost all of the big things are out of our hands. Makes us think a lot about the illusion of control we were operating under before. 

We are realizing (as with so much of this whole journey) that how we handle things will likely vary on a  case-by-case basis and that the bigger thing is to try and emotionally prepare ourselves for the constant ups and downs. That’s just part of our new reality which is too bad because Cassie really hates roller coasters.

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.