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Apr 13
6

Time in the Age of Coronavirus

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Since we’ve been in quarantine we’ve started to exercise at home. We walk a lot — so much that Doc the Basset Hound frequently stops, lies down on the sidewalk and glares at us. We’ve also been using the Peloton app. We had previously thought it was just for biking but we discovered that you can do cardio, body-weight strength classes, yoga and even meditation (though we haven’t advanced past five minutes for those yet). 

In the middle of one recent class, our instructor, with an eye towards motivation, exclaimed something like: “Make the most of this moment because you can’t get it back — time is NOT a renewable resource.” That throw away comment struck us both in the moment and we’ve returned to it often since.

Time is not a renewable resource. So simple and yet kinda profound. Upon reflection, we both think that until Cassie got sick we had often treated time like it was renewable. Sure we tried to be intentional (and were getting more so as we got older) but often days and weeks would just fly by without our giving real thought to what we were doing and why. We would often over schedule ourselves and become more focused on getting everything done than enjoying what we were doing. Occasionally we would realize how fast we were moving or how busy we were and try to re-calibrate. Mostly though we just kept going because we just assumed we had enough time to do everything we wanted. If we were too busy this week we’d do it next week. If we didn’t get to it this year there was always next year.

Then Cassie was diagnosed with metastatic breast cancer. While it varies greatly by person, the five year survival rate is just 22%. Less than a quarter of people with this disease will live beyond five years post diagnosis. Even with all of our doctor’s caveats, that statistic slapped us in the face. It also changed how we started thinking about time — it really is precious or in the words of our Peloton instructor it’s nonrenewable. We identified a set of personal “buckets” to help us focus and prioritize our time (for more on what those are, see our 3/21/19 blog post) and we are making different choices than we were before. Our relationship with time has changed. 

And now along comes Coronavirus and once again life as we (and everybody) know it has changed. One day bleeds into the other. Weekends mean less. Time feels different. And Cassie in particular can’t help thinking about the fact that she only has limited time left and some (much?) of that is likely going to be spent in isolation not doing the things we had planned. Not seeing the people we love.  Not taking advantage of the energy she has now but won’t have later. What if this is the last time we ever get to come to Napa (our happy place) and we just spent most of it indoors?  What if we don’t get to see our friends and families for months? What if Cassie begins to decline next year and this, her last “good” year, was largely spent in isolation? These are impossible questions with no real answers but this week they’ve resulted in a lot of tears and a lot more thinking about how we maximize our time no matter the circumstance.  Can we stop thinking about this as lost time and somehow re-frame it as found time for the two of us as a couple? That still feels hard but probably worth trying. 

Oh yeah and we are also setting a strict daily step limit for Doc so he stops glaring at us. How he uses his time matters too. 

Apr 01
4

Warning: Coyotes Ahead

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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

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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! 

Mar 25
6

Social Distancing From the News

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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.

Jan 29
9

The Great Lizard Incident of 2020

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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. 

Dec 03
9

A Rabbi, a Death Doula and Mr. Rogers

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When Dan’s mom died this past May the Rabbi at her St. Paul Shiva shared an interesting observation. He explained that Jews traditionally avoid euphemisms like “passing” or “moving” on. They speak directly of death and dying. Now the Rabbi wasn’t being critical of other faiths or traditions he was just noting that death is certain and unavoidable and that confronting this certitude directly and head on can actually be healing. 

This was affirming to both of us because we had already started to do this. As we shared in a previous post, Cassie was a little obsessed with planning the details of her death, burial and funeral and we have been doing that in fits and starts for almost 14 months. There is also a lot of dark death humor in the Cramer household these days. And while this often takes our friends aback, it helps us to talk and joke about it. This is our life now and while hopefully still many years off —the previously abstract and far-removed idea of death has been replaced by a new and more immediate reality. Death now seems closer than we would ever want or have imagined and we just have to deal with that fact.

So with all of this on our minds, Cassie signed us up for a Community Education Class called “Death: It’s a Collaborative Event.” We walked into Central High with some trepidation but also open to what we might learn. And we learned a lot. First though, we were a little surprised to find that the class wasn’t filled with people like us who were confronting what could be the imminent death of a loved one. Instead it was attended by people who were seeking to better understand death and how to navigate this one great certainty that we all confront. 

The class leaders, a “death doula” and a celebrant (who helps create traditions and lead ceremonies) explained that we can “have the death we want” but only if we talk about it and plan for it. They led us through a visualization asking us to picture our final days. The room we are in. The way it looks and smells. The art on the walls. The photos by the bedside. The music playing. What surrounds us? Who surrounds us? Is someone with us all the time or do we want to be left alone at some moments? Have we written goodbye letters? Recorded video? Have we put ourselves in a position where we can let go? Are we set up to die on our terms or are we leaving all that to chance?

We sat there with our eyes closed imagining all of this. We reached for each other’s hand. We cried. But we also appreciated the questions and the conversation that followed. The biggest piece of advice — create a death “plan,” write it down and share it with our loved ones. Now on the one hand that seems hard and scary but on the other really liberating. So that’s what we are doing — together, one plan for each of us, and we have given ourselves a deadline so we can be done with the fits and starts and focus our energy on living. Then as a final affirmation, we learned that even Mr. Rogers talks about death. We recently saw the new movie “A Beautiful Day in the Neighborhood” and both walked away with a Fred Rogers’ quote about dying stuck in our heads: “Anything that is human is mentionable. And anything that is mentionable can be manageable.” Even, or especially, contemplating death. Thanks Mr. Rogers, Death Doula Jane and Rabbi Latz for the inspiration.

 

Nov 26
7

A Gratitude Post

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We are grateful for…

  • Macaroni and cheese
  • Friends who listen
  • Good health insurance
  • Snow (this one is all Cassie)
  • Laughter and hugs from our nieces and nephews
  • Long walks
  • A cuddly basset hound
  • Jeopardy (especially the episodes with James Holzhauer)
  • New restaurants and dining experiences
  • Good books
  • Dumb jokes
  • Red wine (OK, white and rose too)
  • Holiday parties
  • Caregiver support (Jack’s Caregiver Coalition)
  • Caregetter support (Firefly Sisterhood)
  • A superb oncology team
  • Soft blankets
  • Colleagues who have your back
  • So many good local breweries
  • Clarity about what matters most
  • Sweat pants
  • Winona
  • A crackling fire
  • Exceptional therapists
  • Binge worthy television
  • The Highland Grill
  • DB
  • Brothers and sisters
  • Parents
  • Turkey and stuffing
  • Things on the calendar to look forward to
  • Enduring love
Nov 19
11

Resilience

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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

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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.

Nov 08
11

Caregivers Have Feelings Too

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Last weekend Dan and I, along with my parents, attended the Midwest Metastatic Breast Cancer Conference. It was interesting and we learned a lot about medical research, clinical trials, palliative care, integrative health, and advocacy and got to connect with others living with MBC. Dan co-led a session on being a caregiver and that, combined with some thinking I was already doing, has me reflecting on the role of caregivers. 

The life of a caregiver is tough. Always putting the needs of the “care-getter” above their own. Sacrificing personal wants and needs for the other. And sometimes minimizing their own emotions and feelings of sadness about their loved one’s illness in order to keep a brave face.

As a care-getter with an amazing caregiver, I need to remember how hard this is for Dan. My cancer affects him deeply . . .And, he is allowed to show it. To others and to me. 

For the last couple of weeks, I’ve noticed Dan feeling more down than usual. He was going about his day-to-day life, but I sensed an unusually deep layer of sadness and discontent. Kind of one of those things that when I was healthy I’d wonder whether I’d done something to piss him off! But this time I heard the voice in my head saying: “Of course he is sad, his wife has a terminal illness.” Dan’s life has been turned upside down. Much of what we had hoped for and expected from our lives together is different now. 

It is interesting to experience how our relationship has changed since the early days of my diagnosis. Moving from “deal” mode, to settling into the ongoing reality that this is our life now. 

How do I as a care-getter support my caregiver? Can our roles ever switch back and forth? I’ve been trying to encourage Dan to do things that are fun for him and that don’t necessarily include me. However, he is often hesitant to do that because he wants to maximize our time together. But self-care for both of us is now more important than ever. How do I help him with his? Is there a way for us to have days where we step out of our caregiver/getter roles? Maybe not but perhaps we can redefine those roles to fit where we both are and what we both need right now. 

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