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Ding-dong the brace is gone. Which old brace? The horrible brace. Ding-dong the horrible old brace is gone!

You’ll hopefully excuse us a moment of frivolity (and a massacring of that Wizard of Oz classic) as we are still riding a high from Cassie’s newly discovered brace freedom! The days since have been some of our best in a long, long while — maybe since her cancer diagnosis.  We have both been luxuriating in how much easier our lives are without the brace and the accompanying restrictions. Cassie can do things on her own. She can drive again. See her own feet. Walk with friends. Help with dishes and dinner prep (though her grabber is still in play) and sit in more than one chair in our house.

And it’s not just what she can do, it’s also how she can be.

The other morning Cassie was sitting on the couch, in front of the fire, drinking coffee and reading the news. Doc jumped up and joined her putting his head and front paws squarely in her laps for the first time in a LONG time. Cassie gave a huge sigh of contentment and said: “This is a dream come true.” And it was. 

Whether quiet moments with Doc. An unencumbered hug. Taking walks on her own in the unexpected spring weather or the ability to easily hold a book, it’s the little things that we’ve noticed most. Maybe that’s because these are the things that are so easy to take for granted and overlook in our day-to-day lives? But they bring such joy and are SO restorative. We didn’t understand how much they mattered until they weren’t possible. 

Sure there are hard things ahead. We have another scan coming up to see if the cancer is still growing (there always seems to be another scan). But we are not jumping ahead. We are waking up with smiles and lightness for the first time in what seems like forever. We are basking in new found freedom. We are hugging each other a lot. Mostly we are appreciating the little things and hopefully remembering to never again take them for granted.

It’s hard to mix optimism and Metastatic Breast Cancer.

Even for people who are more naturally optimistic like Dan.

Today we head back to the Mayo Clinic to find out if Cassie gets to lose the horrible back brace she has been in for ELEVEN weeks! It’s been a particularly tough stretch that has made us feel like our already condensed lives were even smaller. The brace has a huge negative impact on Cassie’s quality of life — both of ours actually — and we’ve grown to loathe it with a passion.

As this day approached, Cassie said “I don’t think we should get our hopes up.” To which Dan immediately replied” “That train has long since left the station.” We are both hoping so much that today is the day. As we’ve noted before, our home is filled with a lot  of dark humor and we’ve both recently taken to joking about how much we want to get back to the “good old days” when all we were dealing with was a terminal cancer diagnosis. So we hope and pray that the brace comes off.

But we are not optimistic. How can we be when it seems like most visits to the doctor brings a different form of bad or hard news? You have MBC. You might be paralyzed. You need to wear a brace. Your cancer is growing again. Optimism is in short supply. Even cautious optimism. But that doesn’t mean we’ve lost hope. It just means that our hope now comes with a generous dollop of pessimism. 

So here’s hoping that in a few hours we are in Winona for the first time in months and cracking open a good bottle of wine to toast a return to life without the brace. We are not counting on it, or expecting it but we sure are hoping for it. 

It’s easy to be cynical about Valentine’s Day. The price of flowers go up. It’s almost impossible to get a restaurant reservation (in normal times) and when you do the meals usually disappoint. Presents. Cards. Bubbly. It can be a lot. And all of that is of course on top of thinking about what the day might feel like for people who don’t have someone special. So yes, cynicism on and around St. Valentine’s Day is perfectly understandable.

We choose the opposite though. Embrace over cynicism. Not for the commercial aspects but for a day that intentionally and unabashedly is about embracing love. So on this February 14, as we get ready to celebrate with Cassie’s parents. As Dan dons his traditional Valentine’s Day socks and as we look forward to a multi-course, Italian-inspired feast, we wanted to share 14 things we are feeling special love for in THIS moment.

• Ted Lasso
• Our nieces and nephews. We heart you Slv, Hank, Mal, Evie, Mimi & Ari!
• Wine
• Heat that works and pipes that haven’t (yet) burst.
• Plans for future travel
• Love songs (if you want our Spotify VD playlist just ask)
• Online poker
• Joe Biden and Kamala Harris 
• Cassie’s parents
• Our new treadmill
• The Frozen River Film Festival
• Cancer meds that didn’t even exist five years ago
• Chocolate delights from our dear friends the Richmans

And of course each other. We first celebrated Valentine’s Day together in 1992. Some break-ups followed and it wasn’t close to a straight line from then until now. But our love is strong and enduring and full of joy, strength and laughter and for that, above all else, we are grateful. Today on THIS Valentine’s Day, we choose to put aside the hard shit that surrounds us and celebrate all the love in our life. 

Tell someone you love them. Don’t wait. Happy Valentine’s Day.

We’ve gotten into smoothies. Thanks to a recently acquired Ninja Blender (blatant product plug: it’s great and not all that expensive at Costco), and recipe guidance from our good friend Sherry, we have been churning out delicious concoctions to start many days. 

So the other morning we were cleaning up after a delightful mixed-berry smoothie and we couldn’t find the top of the milk container ANYWHERE. We knew it had to be there. We had JUST used it for goodness sake but it was nowhere to be found. Both of us kept moving in circles, opening drawers, lifting cutting boards, looking down the disposal and in the fridge but nope it wasn’t in any of those places. It had completely disappeared. But of course it hadn’t. After about ten minutes of futile searching and eye rolling, it turned up stuck under the top of the blender. We both laughed but we also sighed in virtual unison because this wasn’t close to the first time that we found ourselves feeling more scattered, disorganized and generally unmoored since Cassie’s diagnosis.

There were those times (many, many times) immediately post diagnosis, when Dan went to pay for something only to find that he had none of his credit cards, having left them scattered at different restaurants all across town. Or that time we nearly ran out of gas driving to a doctor’s appointment (thank God we noticed at literally the last moment). Or when we recently lost our checkbook for over three weeks only to find it in the same backpack we had already checked a dozen times. Cassie backed out of the driveway and smashed into our handyman’s car which she had just passed pulling in five minutes earlier. Dan went to get something out of the freezer only to leave a really good box of Sitka salmon (there’s a another product placement for you) out to spoil. The front door is often left open — that’s mostly Dan truth be told — and the degree to which we misplace our phones or get lost driving somewhere we know can’t be overstated.

Now some of this is of course normal (everyone loses their keys and phones right?) and even more so in the midst of a disorienting pandemic. That said, we are both pretty organized people and the frequency that we are losing, forgetting, misplacing and not remembering things is not typical for us. Or rather it is not typical to who we were pre-Metastatic Breast Cancer diagnosis. We sometimes refer to it as “cancer” brain and it impacts us both. It’s so easy to get frustrated and to channel the larger anxieties in our lives on to these smaller lapses. We  yell out of exasperation and beat up on ourselves with some regularity and one of us is constantly having to remind the other that this all makes sense. That of course we are going to lose and forget shit because our brains are otherwise consumed with big issues, concerns and fears. It’s requiring us to practice patience, gentleness and self-compassion (none of which come naturally to either of us) and to accept that this is just part of our “now” normal. It’s not a huge deal, especially compared to other challenges, but it’s a pretty constant pain in the ass and just one more reminder of how our lives have changed, in ways big and small, and how we have to practice changing (or at least better accepting ourselves) in response. 

P.S. The secret to Sherry’s smoothies is frozen bananas. 

When Cassie first tried on the back brace that she now has to wear she burst into tears. When Dan had to put the brace onto her for the first time he hyperventilated, broke into a sweat and had to take multiple breaks. Neither of us could imagine doing this for eight weeks (or God forbid possibly up to six months which we have now discovered is a possibility). On top of Cassie’s Metastatic Breast Cancer it was just too hard. Too uncomfortable. Too much to learn. Too difficult to adjust to. Too scary. Too unknown.

Jump forward to yesterday when Cassie said: “I have hope for next year. I think 2021 is going to be a more hopeful year. A better year.” She went on to suggest that we set some goals as a couple for next year and for each of us individually as well. She said she might even share her personal goals with Dan.  

We will leave the sharing of our couple’s goals for another day (after we actually know what they are) but for today we find ourselves grateful for the gifts of adaptability and resiliency. The brace is as uncomfortable as ever but it now comes on without tears or hyperventilating. We are learning what we can and can’t do. We are tailoring our days differently. We are even figuring out how to nap with the damn thing. 

We are adapting and that gives us hope.

“I don’t want to do today. Can we just fast-forward past it?”

Those were Cassie’s first words this morning.

And they make so much sense. Of course she doesn’t want to “do today.” She’s reached the point of beyond too much.

• A Metastatic Breast Cancer diagnosis was too much.
• Being told she might only have 5-6 years to live was too much.
• The extreme fatigue from the cancer medications was too much.
• The pandemic was too much.
• The summer murder of George Floyd was too much.
• Four years of Donald Trump and his hateful racist politics was way too much.
• Recurring back pain from a herniated thoracic disc was too much.
• Learning she might be paralyzed if she doesn’t address the disc/spine issues was too much.
• The seven and a half hour back surgery was too much.
• Being alone in the hospital post-surgery because of Covid was too much.
• The first four weeks of excruciatingly painful recovery and little to no sleep was too much.

And that was all before Tuesday when we learned that Cassie’s back isn’t healing correctly. That there is too much pressure being placed on the new bolts in her back. That her Mayo doctor is very concerned. That she has to wear an incredibly restrictive brace (it looks like some sort of medieval torture instrument) sixteen hours a day for at least eight weeks!

We don’t list all this out by way of complaining. We share it because at every step we said to ourselves. “It’s too much.” And then Cassie would always say: “But it doesn’t get to be too much.” So what do you do?

How do you handle life when too much doesn’t get to be too much. When you feel so overwhelmed and hopeless (even always optimistic Dan) you don’t know how to move forward but you know you have to?

For us it starts with remembering that as bad as this is, others (many others) have it even worse. We have support (thank goodness for Cassie’s parents right now), health-care, resources and a home we love that serves as a refuge. None of this diminishes how hard this is but all of it makes it easier to navigate the hardness.

We are trying to lean into kindness. To each other and to others. We can’t do a damn thing about Cassie’s pain and discomfort but we can keep expressing our love to each other (more daily kisses and hugs — but watch that back!) and we can keep trying to send goodness and love out in the world. That we can do. 

We are trying to adopt a “beginner’s mindset” when it comes to Cassie’s back and living with this damn brace. What can we learn from yesterday that might make today just a little easier? What hack’s might make the brace just a little more comfortable? How can we kill time together when reading and even watching TV are basically out? How do we stay more present than usual with each other (maybe Dan stops checking his texts and emails as much because that’s an activity not available to Cassie right now and it creates an imbalance)? How do we navigate the day with an openness to trying new and different things even if most of them don’t wind up actually improving Cassie’s situation?. 

Finally, we are desperately trying to stay focused on today. Not the eight weeks in front of us. Not the fact that when Cassie eventually heals from her back surgery she will still have Metastatic Breast Cancer. We are trying to avoid “future-tripping” as Dan’s brother often says and just deal with what’s right ahead of us. For now that might mean some days where the best we can do is endure. Since we can’t hit “fast-forward” we just have to be in it. 

Yesterday, Dan’s therapist shared a poem at the end of his session. It’s called “Start Close In” by David Whyte and the first stanza spoke to both of us:

Start close in,

don’t take the second step

or the third,

start with the first

thing

close in,

the step

you don’t want to take.

So that’s what we are doing since too much doesn’t get to be too much. We are starting close in. Together.

The other day, a friend of ours said that if a year or so ago, you had pitched 2020 as a movie or television concept it would have been dismissed as too unrealistic. As our friend remarked: “There is just no way you would have belived that so many hard and challenging things would all occur at the same time.” 

We couldn’t agree more. 

Yet in spite of everything, or maybe because of everything, we remain more grateful than ever. Among other things we are grateful for:

Our funny and generous friends.

Our incredible family.

Zingerman’s Deli.

Accessible health care.

Pelaton.

Dogs with floppy ears.

Skilled doctors.

Nieces and nephews.

The President-elect.

Zoom poker games.

Long walks (Dan)

Short walks (Post-surgery Cassie)

New puppies.

The Black Lives Matter Movement

Cooking.

Silly jokes (“Why don’t they play poker in the jungle? There are too many cheetahs.”)

Great colleagues and clients.

Jack’s Caregiver Coalition.

Good books.

Masks.

Learning.

Deep dish pizza (well any pizza but especially deep dish).

Ice packs and heating pads.

Haikus.

Cassie’s parents.

An enduring love.

While this Thanksgiving may not look like any other we have experienced, our hearts are still full and our gratitude plentiful. Happy Thanksgiving.

To say that our anxiety level (like many people’s) has been high these past couple of weeks would be a dramatic understatement. There’s been our normal anxiety of living with Metastatic Breast Cancer. The unfortunately “now” normal stress of living in an ever-lengthening pandemic. The anxiousness and fear leading up to the election and the unbelievable anxiety on election night and the days that followed. 

On top of all of that, we also knew that we had Cassie’s impending back surgery awaiting us on November 12.  What truly put us over the top anxiety-wise though, was learning that Cassie has to go it alone in the hospital. Thanks to the recent Covid spike, Dan can’t be in the hospital at all — not before, during or after the surgery. No matter what. No exceptions. So that sucks.

We started to process this latest curveball (see our last blog post for more on those) on our drive home from the Mayo Clinic where we had been given this crappy news. We both felt our chests tightening, our throats drying and our heads throbbing. One or the other of us kept audibly sighing. Dan can’t bear the thought of Cassie waking up alone in a strange hospital after a really long and risk-filled surgery. Cassie hates the idea of Dan not being there and worries about him at home in Saint Paul while she spends what could be a lot of days in Rochester. Our anxiety rose. Our fear was palatable.

At the same time, we also recognized that we are actually becoming pretty adept at living with anxiety. That’s what life with Metastatic Breast Cancer means and requires. As we talked, and looked back over the past couple of years, we realized that we’ve adopted a couple of informal rules or practices for anxiety/stress management that help us deal with the stress together as a couple. 

• Rule 1: Name the anxiety. That helps take some of its power away. 

• Rule 2: Create room for the anxiety because it’s not going anywhere. That means slowing down, letting other things go, being gentle with ourselves, and asking for help (to be clear all of these are still a major work in progress for both of us). 

Now, as the stress around Cassie’s imminent surgery piles on, we’ve identified a third practice that we have been exploring.

• Rule 3: Surround the anxiety. While we can’t make the anxiety go away we can decide what to put around it that might make it easier to live with and get through each day (and night). For us, we decided to surround our newfound stress with love and gratitude. That has looked like hugging each other more, spending more time with friends, checking in even more regularly with family and sharing our gratitude with each other and our support community. 

These little acts of love and gratitude don’t mitigate the anxiety but they do provide a nice accompaniment. It’s kind of like when we used to do a beer chaser with a shot of booze in our younger days — it didn’t make the shot taste any better but it sure helped it go down easier. OK, maybe that’s an imperfect analogy but hopefully you get our meaning. 

Cassie’s surgery is Thursday and even as we remain scared shitless we continue to surround our fear with love and gratitude and for us, right now, that’s helping.