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Jul 13
17

Dear Cassie

By | Blog

July 13, 2021

Dear Cassie,

Today is your three year “Cancerversary,” a word that we didn’t even know existed in July 2018.

I can’t believe it’s been three years — in so many ways it feels like yesterday.

I can’t believe it’s only been three years – in so many ways it feels like an eternity has passed.

I’ll try to keep this short and sweet which you always say is best when it comes to writing. It helps that I’ve said all of this to you before but it feels important to say out loud again today. 

Over these past 36 months, you have often said to me that “nobody understands what it’s like.” And as much as I try, I now get that it’s impossible to truly understand unless you are the one living with the diagnosis. After three years, what I have come to realize is that most of us (especially well-off white people) wake up in the morning and are some variation of “fine.” Some days we may be a little worse than fine. Other days, a little better. But most of the time we’re just fine. Not you or others with MBC though. You wake up every day feeling some version of “shitty.” Often it’s pretty bad. Sometimes not as bad. But it’s never not there. The shittiness is constant. It’s unrelenting. It’s heavy. And that’s a really hard way to live.

Yet you do it. I don’t know how, but you do it every single day. Wake up and not feel like yourself but still step into the world. Do so much and see so many people when you are frequently exhausted. Embrace life in the face of death. Live with the fear that every new ache, pain or discomfort might be something really bad but not let that fear define you. Own your reality by honestly sharing how you feel when people ask. Model what it means to live with vulnerability. I learn so much from you and continue to draw strength and courage from you even though I often feel like I should be providing all of that to you. 

We have a big scan coming up and who knows what it will show. You’ve been feeling especially shitty lately and we are both worried. What I do know though, with absolute certainty, is that whatever comes (from this scan, the next, or one years from now) I am in it with you. We will hold hands. We will tell dark jokes. We will play gin and cribbage. We’ll stare at the river. We’ll walk Doc and make plans. We will live as fully as we can every single day. We will face whatever is to come together. I love you so much. Here’s hoping for many more Cancerversaries. 

Love, 

Dan

Apr 08
7

Hitting the Wall

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There was an article in the New York Times this past weekend that caught our attention. It was titled “We Have All Hit a Wall” and it really resonated for both of us. In particular, the following statement, jumped out:

“A year of uncertainty, of being whipsawed between anxiety and depression, of seeing expert predictions wither away and goal posts shift, has left many people feeling that they are existing in a kind of fog, the world shaded in gray.”

This was written about the pandemic of course but we found ourselves thinking about it in relation to Cassie’s Metastatic Breast Cancer diagnosis as well. Except instead of one year of uncertainty it’s been closer to three. The “whipsawing” reference feels particularly relevant this week as we just learned that Cassie’s cancer has continued to progress. Not a lot by any means, but there has now been growth over the last three scans and we seem to be approaching a juncture where changing medications could well be in order.  None of this is remotely unusual, or unexpected, but we definitely feel whipsawed from the high of seeing her back brace removed in February back to the reality and uncertainty that is life with MBC.

We also related to this other point in the article: 

“Stress is OK in small amounts, but when it extends over time it’s very dangerous. It disrupts our cycles of sleep and our regular routines in things like exercise and physical activity — all these things make it very difficult for the body to be resilient.”

Lots of stress? Check. Extended over a long time? Check. Disrupted sleep cycles? Check. Diminished resilience? Double check. We have especially found ourselves struggling with resilience.  Over this last pandemic-dominated year to be sure, but also over the past few days since we found out about the cancer growth (especially Dan). So what do you do when you’ve hit the proverbial wall? When your resilience is in short supply and continued uncertainty and stress abounds? The article didn’t offer a lot of suggestions which we actually found kind of refreshing. For us, the best we’ve been able to come up with is to go back to basics — to the things that grounded us in the beginning when we felt the most overwhelmed.  Cassie said it well the other day: “We’ve just got to focus on living as fully as we can right now in this moment.” 

That might not look the same as it did pre-pandemic but with both of us being close to fully vaccinated “living” life can certainly involve a lot more than it has these past twelve months. Bye bye Zoom happy hour and hello in-person cocktails! We’re booking travel and trying to figure out when we will feel safe eating inside a restaurant. We’ve also decided to revisit our buckets (See 3/21/19 post for more on those), refresh them and start actually scheduling things that bring us some lightness and joy. It’s not going to be that easy as we remain anxious, scared and cautious. We have to wait four more months until the next scan but we are not going to suspend our lives until then — especially not after the last year.

It seems like when you hit a wall you have to decide whether you are going to keep trying to push through it or change direction and try something else. This week we are going with the second option.

Jan 19
9

The Cancer Couple’s Conundrum

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There was a lot of crying in our home over the first days of the new year. More accurately at the end of the days. When we would get ready for bed. Take off Cassie’s back brace and turn off the lights. There in the dark we found ourselves engulfed in sadness. Sad that the holidays were over. Sad that Cassie was still in a horrible back brace. Sad that we had little to look forward to. Sad about the pandemic and the state of the world (and that was before the coup attempt). And of course sad that on top of it all, Cassie still has Metastatic Breast Cancer. This unrelenting disease that is always with us.

We also felt disconnected. Dan was exhausted from days of holiday preparations and cooking. He needed to sleep and sleep some more. He wanted to take some long walks to clear his head. To lose himself in a book without talking to anyone. Cassie, while super understanding of Dan’s exhaustion and supportive of his self-care also needed him close and present. In times of greater sadness and loneliness it only makes sense that you want to be as close as possible to those you love most. But it also presents a conundrum that we have experienced at different points (usually very stressful points) since Cassie’s MBC diagnosis. 

How do you center both the care-getter’s need for more sustained connection at especially hard and challenging times and the caregiver’s need for greater self-care at those exact same moments?

Neither of us wants the other to suffer. Both of us are naturally inclined to sacrifice our own needs. Neither of us wants to make the other sad. Both of us see the need for Dan’s intentional self care and for deeper connection as a couple.

Figuring out how to balance all of this is a recurring and core conundrum for couples dealing with a late-stage cancer diagnosis. 

We’ve been trying to talk about it more explicitly — and not just late at night when we are tired from the day and the darkness is both literal and figurative. We are also working on getting back into more of a routine (abandoned since Cassie’s surgery). We try to think of the mornings as our “alone” or individual time — perfect for calling friends, walking, reading, journaling, going back to sleep or working out. Doing all of that may not be possible in the limited morning hours but some of it most certainly is and right now that’s more than sufficient. It also leaves the afternoons and evenings for doing things together — being more connected. 

Empathy. Intentional conversations. Developing routines and practices that work for both of us. We find ourselves returning to these tools over and over on this Metastatic Breast Cancer (and now back surgery) journey. Yet we also find ourselves forgetting them over and over again too. We now see that’s the nature of being in a perpetual crisis of unrelenting stress and anxiety. It’s easy to forget what you know. To lose sight of what’s working. To abandon routine. To stop sharing what you’re feeling.

So we re-learn as we need. Re-discover as we have to and remind ourselves that together we can do this. 

Jan 08
7

A Poem

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This poem by Rumi was shared with Cassie by a dear friend. It really hit home for us.

“The Guest House” 

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they’re a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice,

meet them at the door laughing,

and invite them in.

Be grateful for whoever comes,

because each has been sent

as a guide from beyond.

— The poet Rumi, translated by Coleman Barks

Not gonna lie.  We are going through a rough time right now (and we were feeling that before the failed coup attempt this week). Our family and friends are life preservers, for sure. But, in the end, it is the two of us navigating rough waters alone. How do we do as Rumi says and be open to all that we are experiencing – both good and bad? How can we together as a couple manage all of the different “visitors” that are streaming the doors of our Guest House? We’re not sure. We know though that  this is the  challenge to focus on right now and we suspect that as Rumi suggests, gratitude may be the key to this house.

 

 

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 13
14

Cancer. I’m against it.

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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

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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

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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. 

Apr 19
8

Decision Making with Cancer

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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. 

 

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