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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 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

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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 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. 

Mar 25
6

Social Distancing From the News

By | Blog

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

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

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

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

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

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