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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.

We are both big baseball fans. The Twins and the Cubs are our favorite teams and we are more than a little heartbroken that they both had early exits from this year’s playoffs (though given that the Cubs won the World Series in 2016 and then Trump won, maybe their early loss this year is a good thing?) 

Dan’s dad was a HUGE baseball fan. He often used to say that baseball is a great analogy for many parts of real life. That observation has felt especially relevant to both of us recently. 

They say that the hardest act in all sports is hitting a baseball. It’s hard to prepare yourself for the different pitches because you never know what’s coming. Fastballs are probably the easiest to hit but then there is that damned curveball.

We’ve been talking about curveballs a lot lately. It seems like each time we feel that we are beginning to settle into a groove with this whole Metastatic Breast Cancer thing (learning to hit the fastballs) along comes some new crazy curveball.

The latest unexpected curve doesn’t even have anything to do with Cassie’s cancer. About a year ago, she began to experience bad pain in her back. After ruling out further cancer metastasis, it was diagnosed as a herniated thoracic disc. While it’s pretty uncommon to have a bad disc in that region of the back the doctors still thought it would cure itself as do most similar injuries.

Well it didn’t. The pain has only gotten worse and after a number of further consultations, and a second opinion at the Mayo Clinic, the recommended course of action is surgery. Yes, even surgery for someone with Metastatic Breast Cancer. It’s suggested because the risks of NOT having the surgery are potentially severe including what the doctors termed “a real possibility of paralysis” if we don’t act. 

And of course it’s not just any surgery. It will be a complicated procedure likely necessitating multiple days in the hospital and a long and hard recovery. So once again we feel like we have been hit by a truck, or rather to torture the baseball analogy, like we have been hit in the head by an errant curveball. We are worried and frightened. We feel isolated (thanks Covid) and overwhelmed. We keep saying “enough already” and it’s “too much” but then one of us always says — “yeah but it doesn’t get to be too much” and we just have to deal.

So that’s what we are trying to do. Even though, like almost everybody else in the midst of this pandemic and election season, we are exhausted and depleted. We don’t get to pick and choose the curveballs that come at us, we only get to decide how we react to them. To us that means remembering that every day we get to make a choice between hope and despair. Most days we choose hope and we move forward. And on the days that we can’t choose hope, where it all just feels too overwhelming, well on those days we remember that we get to make the same choice all over again the next day.

This latest curveball sucks. The surgery is going to suck and the recovery will probably suck as well. But all that said, we choose hope because that’s the only bat that will allow us to hit this curveball and the next. And who knows, a little more hope may even get the Twins and Cubs back to the World Series one of these days. 

My birthday was last weekend. On a birthday morning walk with a close friend, I found myself saying: “It’s just 53 not at all a significant birthday.” Then I almost immediately contradicted myself by adding: “But if we have learned anything recently it’s that there is no such thing as an insignificant birthday.” 

There is no such thing as an insignificant birthday. So simple but also a new mental frame. Who cares if the birthday doesn’t end in a zero or five? Every year we have is special and worth celebrating just because we have it. For me and Cassie, every birthday is a now poignant reminder that we are each still alive and choosing  to live our lives as fully and full of love as we can.

Early on, after Cassie’s Metastatic Breast Cancer diagnosis, a number of people said something that I found strange at the time. They remarked: “Well any of us could die anytime — I mean we could be hit by a bus tomorrow…” I still don’t know why people felt compelled to say that to us, but I found myself thinking about it a lot. Sure any of us could die at any time but most of us don’t live our lives that way. We don’t focus on the things that matter most or allocate our time as if we only have a limited amount of it left. Why not? 

I think it’s because while we say it we don’t really believe it. We think (especially well-off white people) that we are almost guaranteed to live to a ripe old age and to have all the time we need. Well for me that myth was shattered with Cassie’s cancer diagnosis. While I sure hope that all the data is wrong and that she lives for a long time yet, I am not planning on it. I want to live each day like we have limited time left because that’s likely the reality. I want to make the most of each day and each year and that’s why there are no longer any insignificant birthdays.

Recently we learned that Cassie’s cancer has started to progress. Not a lot at this point but definitely the wrong direction. Upon hearing that news, we felt like we had been punched in the gut all over again even though we both know that this is just the deal with Metastatic Breast Cancer. It’s unrelenting. 

We realized right away that it would be easy to fall back into a complete sense of sadness and grief for what we are going through. Not surprisingly perhaps, in Cassie’s metastatic cancer support group that week the subject turned to all that the women in the group have lost and all the ways their lives have changed. One woman spoke up and said at this stage of her illness, she is more focused on what her cancer can’t take away.

We decided that might be a good exercise for us, too. . . . . 

What cancer can’t take away

Craft cocktails 

Stylish shoes 

Delicious wine

Corny jokes and laughter (“Woman walks into a bar. Bartender says what are you having? She says — A Corona and Two Hurricanes. Bartender replies: That’s 2020!”)

Playing games

Time with our friends (even if six feet apart)

Walks with Doc the dog

Grilling good food

Zoom poker

Celebrating milestones 

Bloedows donuts (go to Winona and check them out they are seriously the best)

Sunsets over the river 

Family zooms

22 years of marriage full of love

Recently, one of the other guys in my caregiver support group (Jack’s Caregiver Coalition) emailed me and asked what being a caregiver means to me. Here is what I wrote back.

The person I love most in the world has late stage cancer. Being a caregiver to her is the hardest and most important thing I have ever done in my life. I hate that I have to do it and I wish more than anything that Cassie didn’t have cancer but I am grateful that I feel equipped to play this role. More than anything else, being a caregiver to me means being present. Being around. Listening. Loving. Being there with Cassie, not always to help with something (though that is part of it) but just being in it with her. It’s hard but it’s beautiful too in a way I can’t really describe. It’s also unrelenting. There is never a day she doesn’t have metastatic breast cancer so there is never a day off from being a caregiver. I don’t say that because I am looking for sympathy just to state that’s the reality. You are always on (even when there’s down time you are still on heightened alert). You are always scared. I worry all of the time about Cassie and while I don’t actively think about it I know that somewhere in the dark recesses of my mind I am scared about what will happen when she dies. I can’t imagine my life without her so I choose to focus right now on our life together for whatever time we have left. It’s hard and it’s sad and it’s loaded with grief for what we have lost but we are in it together. Caregiver and caregetter loving as fiercely (if not more fiercely) than ever.