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Apr 08
7

Hitting the Wall

By | Blog

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.

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. 

Apr 01
4

Warning: Coyotes Ahead

By | Blog

Neither of us are all that into Astrology but that doesn’t mean we aren’t open to signs. Everyday we encounter signs. But, do we follow them or decide to ignore what they tell us? Doc and Cassie recently stumbled on this sign during a walk.

They heeded the warning and turned around.

Living with a terminal cancer diagnosis and being their caregiver both require expert “sign-reading” skills. For the care-getter: How do my actions translate into how I feel physically? How does the way I feel today compare to previous days/months? What things make me more emotionally healthy? For the caregiver it’s heeding signs about self-care even as you worry more about your partner. It’s also being constantly aware of how your loved one is feeling and when to offer your thoughts and opinions about their life, actions and decisions — these are especially tricky signs to read.

In this time of staying at home and living life much differently than we used to (even after the cancer diagnosis), we are both seeing signs. For the most part, Cassie is feeling well — some days even than when we were home. We’re taking this as a sign that a slower, more relaxed pace is beneficial. Cassie’s joints hurt less. This sign points to the benefits of single level living and lots of walks. She’s also sleeping better. Maybe the dog is not allowed to sleep with us when we get home? And despite the worry about Covid-19, she is feeling less stressed generally — we’re not sure what this sign is! 

For Dan less social media and news has resulted in far less anxiety (maybe that stays). Truly limiting work to dedicated days/hours has resulted in greater presence at non-work times (can he continue this discipline?)

What part of this slower, pared down life works for us? Are there things from this time that we want to carry forward after the quarantine is lifted? Is it possible for us to move out of quarantine time and continue to have fewer expectations for ourselves? Can we move forward with a priority on taking walks, napping, reading and playing cards? 

How do we read these signs and apply the messages moving forward? 

PS: Here some other signs we’ve recently seen and appreciated.

PPS: Cassie is a Taurus and Dan a Libra, in case you’re curious. 

Mar 27
5

Look Up

By | Blog

I look down a lot – not on other people but when I’m walking. Did the dog poop? Is there a crack in the sidewalk? (I do have a propensity to fall so that one kinda makes sense.) Is there a stray sandwich on the ground that Doc could get? 

The other day, Doc and I were out walking our new route (in St. Helena California where we are spending the spring) when he decided to stop. He just sat down and there was no moving him. So, being that we had no particular schedule restraints I just let him be. In that moment I looked up and saw the most amazing view of sunshine and fog on the mountain side. It was incredible. Doc and I had walked this same route at least twice before and I had never noticed it. Too much looking down. What other things had I been missing? 

What I realized is that when you slow down and look up you can see some cool stuff. A street bearing the same name as a friend. Two stone bears a top pillars flanking a driveway. A tree in bloom. The moon. 

I find myself continually amazed at how interesting and beautiful the world is. I like to think I was pretty mindful even before my diagnosis but I’m still surprised by the things I miss. For me, I think, it’s about remembering to be in THIS moment.  This is especially true in the midst of all of the Coronavirus fear. Right now it’s even easier to look down both literally and figuratively and instead I want to keep reminding myself to look up. Right now, today. Observing and taking each moment one moment at a time. Who knows what I’ll see today and how it will make me feel? This type of attention and intention grounds me, gives me focus and instant gratification.  

So, on this scary cancer journey and in these days of Coronavirus I commit to looking up AND walking safely! 

Jan 29
9

The Great Lizard Incident of 2020

By | Blog

Aloha.

We are just back from an almost two week vacation in Hawaii. It was our first time there and we jokingly referred to this trip as Cassie’s “make a wish.” Going to Hawaii is the only thing that Cassie’s said she wanted to do before she died. So we made it happen. “Don’t wait.”

It was a wonderful trip but it also got us thinking about vacationing with cancer. Like everything else, it’s different now. The biggest change is that we used to be able to go on a long vacation and leave life behind. Unplug. Forget about work or our to do lists. Recharge. It’s what made vacations so special and we were good at it. Despite our mutual Type A personalities we had both become excellent vacationers adept at letting go, shutting off our email and leaving life at home. 

Now though, after Cassie’s diagnosis there is no true way to get away. Her cancer is with us all of the time. It’s a constant. She doesn’t suddenly feel better because we are on a beach (though it is certainly better to feel crappy on the sand than in the snow) and our sadness doesn’t miraculously disappear as we board an airplane. MBC is on vacation with us and that’s a hard reality to accept because you want to escape it. You want a break. You want vacation to be what it used to be and you don’t get any of that. It’s unrelenting and omnipresent and that’s hard.

And it’s not just the cancer’s constant presence. It’s small things, too. Like the night Cassie had an allergic reaction to something for the first time ever and we freaked out. Do we go to the ER? Do we call her doctor? Do we take pictures of the rash? Thankfully a Benadryl took care of it but we were totally freaked out in a way that never would have happened before. 

Like we do at home, we tried to adjust and create room for the cancer – you can fight it or you can buy it a seat on the plane so that’s what we did. Feeling sad – bet a Mai Tai will help with that (don’t tell our therapists). Low energy – no problem the pool is right there. We didn’t ignore it or try to be cancer “champs” and tough it out. We talked about it, explored how it was making us feel and how we could respond to those feelings by changing our expectations, plans or pace. It wasn’t easy but it also wasn’t bad. We only had to accept that vacationing with cancer is just different. Fortunately, in spite of the differences, the three of us (Cassie, Dan and our third wheel MBC) all had a great vacation.

P.S. The lizard incident wasn’t really that big of a deal. We were driving back from the beach. Cassie had her window open and her arm hanging out. She felt something on her arm and looked down to find a lizard. She screamed. Dan almost crashed. We pulled over and got it out of the car. That’s all. But then we decided it would make a great title for a blog post so there you have it. 

Nov 19
11

Resilience

By | Blog

Today Doc got his tail caught in a door. Dan was taking him for a walk and heard him yelp but didn’t notice anything wrong and assumed the door had just banged on him a little. He finished the walk and left Doc at home as he headed out to meet a friend for breakfast. Cassie was already out having breakfast and preparing to go to her favorite exercise class.

Then Cassie got a text. It was our cleaning person, Emily, expressing concern about Doc. She said there was blood everywhere. The house looked like a crime scene. Doc’s tail looked cut but Doc wouldn’t let her near him. Cassie rushed home calling Dan as she drove. We were both really worried.

The house was as reported. Blood on the carpets. Blood on the sofa. Blood all over Doc. Emily told Cassie she had been so worried when she walked in that she looked all over to see if we were ok. We were — Doc wasn’t. He was crying and still bleeding. Cassie called Dan on her way to the vet and he literally came unglued. She couldn’t understand a word he was saying as she sought to learn what had happened. He was sobbing, the dog was whimpering, Cassie was driving fast. It was a little chaotic to say the least.

After the rapid trip to the vet Doc now has a long pink bandage on his tail and is drugged out of his mind. There is some concern about whether he will fully heal and if not he will have to have the tip of his tail removed. Poor guy. 

Now unexpected things like this happen all of the time (though thank goodness this particular one hasn’t happened before). Historically when things arose we would just deal (just as Cassie did today) and then move quickly on. We have long prided ourselves on being pretty good in challenging situations and even better in a genuine crisis. Now though, following Cassie’s diagnosis, things like this knock us on our heels. We cry more easily. We worry more. We obsess in ways we didn’t before. We overreact. We catastrophize. Today it was about Doc. Last week it was a challenging work call for Dan. The week before a hard series of events for Cassie. What we are noticing is that we simply aren’t as resilient as we used to be. We are raw. Most of our energy goes to getting through the day and trying to stay as positive as we can. So when something unexpected and hard arises that extra gear we used to rely on isn’t as easy to access or maintain. Recognizing this lack of resilience helps. Naming it is even more important. And the best antidote we have found is to slow down and be gentle — on ourselves and each other (and on Doc).

Nov 13
8

Owning Your Own Story

By | Blog

It is so easy to take on other people’s bad news and transfer others’ suffering to your own life. Someone else’s cancer spreads to their central nervous system. The wife of someone in a caregiver support group has a bad scan.  You get a blog update that describes another MBC patient’s significant disease progression. Or a blogger you follow stops posting altogether because they have died. And you think, “we’re next.” 

We’ve learned that taking on others’ experiences as our own leads us nowhere good! It is so easy to end up in a downward spiral and in a puddle of extreme hopelessness. But, as Kelly Grosklags, an oncology psychotherapist who spoke at the recent Midwest Metastatic Breast Cancer conference, reminded us: “Those are not our stories.”  We can feel empathy and concern for others without taking on their experiences as our own. Their story is not our story. Our story will be different from everybody else’s. All of us dealing with metastatic disease will experience the illness in different ways. The ups and downs. The test results. The side effects. All are unique to our situation. Our story is our own.

We found that bit of advice — to own our story – to be extremely helpful. Not just in dealing with cancer, but in living life. How many times have we heard a piece of bad news and taken it on as our own? Too many to count and it only leads to more anxiety, fear and dread.  So now we are committed to listening to the stories of others and empathizing with their experiences but owning only our own.

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