Hope IS a Strategy

By | Blog

I don’t know the first time I heard the expression “Hope isn’t a strategy” but I have certainly quoted it a number of times over the years. Usually it is something I’ve said to a client or a campaign I was advising as a way to make the case that we needed a plan or a more focused set of goals, priorities and tactics. It would usually engender a laugh and was a good way to provoke discussion. 

Last week though, I found myself saying the exact opposite. I was talking to some fellow cancer-caregivers and we were all discussing how scared, anxious and overwhelmed we were by the current situation. Now not only do our spouses/partners have cancer but they are also at heightened risk of getting Covid-19 and while that is scary for everyone it is especially frightening for those who already have severely compromised immune systems.

So we talked about our fears and all the plans in our lives that have changed. The fear of even stepping into a store because it might result in infection and god-forbid an even earlier death of our loved one. The “bucket-list” trips that people are cancelling without knowing if they will ever get to take them. The sadness and loneliness of not being able to accompany our partners to the doctor. How do you process all of this? How do you not have it overwhelm you?

That’s when I found myself saying: “Maybe hope is a strategy.” It immediately rang true because for me and others in this situation it is actually the only thing we have. Cassie was feeling awful the other day (almost couldn’t get out of bed) and really the only thing I could do was hope that she would feel better the next day. I hope all of the time that new medicines will be discovered. I hope that we have more time together. I’m encouraging us to make future plans and hope we can follow-through on them. I hope that I won’t wake up crushingly sad, or if I do, that I can hopefully find something that day to put a smile on my face. 

And now, in the middle of this new scary pandemic, I am finding that for me hope is more important than ever. There is so much fear, so much I am angry about. So many injustices and so many unknowns. The only way I can handle it all is through the hope of better days ahead. Hope that we will learn from this and act accordingly. Hope that suffering will be less than predicted. 

So I guess hope can be a strategy and I’m embracing it as I face both cancer and Coronavirus.

Decision Making with Cancer

By | Blog

When Coronavirus hit California (where we are spending this spring) Dan wanted to come home. Cassie didn’t. 

Dan was scared being so far from home, our support network and Cassie’s doctors. He worried incessantly about what would happen if one of us, especially Cassie, got really sick. More than anything else he feared her being in a hospital and possible dying alone.

Cassie on the other hand actually felt more relaxed than she had at any point since her diagnosis. Napa is her happy place. She was sleeping better, walking more and, as she pointed out it’s not like we would be seeing people if we were home. She has spent a lot of time contemplating her own mortality since her metastatic breast cancer diagnosis which probably explains why her fear was less pronounced than Dan’s.

So do we leave or do we stay?  Does Dan get what he wants or does Cassie? That was our conundrum in early March.

We decided to give it a few days on the well-learned theory of not making major decisions impulsively (been there, done that). Yet we remained at loggerheads. Dan grew even more anxious. Cassie more settled. 

How to decide?

Like all long-married couples we’ve had our share of disagreements and we’ve learned how to work through them. We can usually find a compromise or talking it out leads to one of us changing our minds or deciding that whatever it is actually doesn’t matter that much to them. 

Then Cassie got sick and her diagnosis has complicated our decision-making process. Dan’s initial tendency post-diagnosis was to just agree or cede to Cassie’s wishes/opinions but that turned out not to be such a good idea because it drove her nuts! Cassie doesn’t want every decision to revolve around her or her situation. She doesn’t want the pressure of always having to be the decider or the sense that everyone (Dan, family, friends) is constantly deferring to her wishes. She doesn’t always want to be on the spot for making a choice or offering her opinion first. She craves a return to some sort of normalcy in our life including how decisions get made.  And of course this all makes sense. It’s not good for our relationship for Cassie’s opinion to always dominate so we need to find better ways of balancing her cancer and our decisions.

This played out in real time with some friends recently (pre-stay at home order) when we had a full day planned and had to decide whether to curtail it some. We all instinctively turned to Cassie and asked her what she wanted to do? But she helped guide us through an alternative approach. She gently said “I don’t want this to be all about me so why don’t we all share what we are thinking and then we can decide.” So we did and we did. It was still pretty stilted because once the idea of stopping sooner or resting more is “out there” it can easily take on a life of its own but we still tried to come to a decision as a group without either automatically deferring to Cassie or centering her situation above all else. For Dan it was a valuable lesson in navigating choices with cancer and trying to keep decision-making as normal as possible.

It isn’t easy because even while craving a return to normalcy in our lives we both recognize that nothing will ever be normal again. Cassie does have metastatic breast cancer — full stop. Everything has changed. And that was before Coronavius hit. Now “normal” feels even more like a mirage. We are all going to have to adjust to a new normal and that includes figuring out how to make decisions through the lens of both MBC and an ongoing pandemic.

For us, that has meant trying to distinguish between big decisions and the many more routine choices that we have to make all the time. A potential (maybe obvious?) guideline that we are now playing with is: The bigger the decision the more it’s informed by Cassie’s cancer. The converse is also true. So for the countless daily, weekly or social decisions that arise we will attempt to treat them as “normally” as possible without centering Cassie’s diagnosis. But for bigger decisions it will be more of a factor.

That’s how we ultimately decided to stay in California. One of us was going to be disappointed by the decision. If we picked up and went home it would be Cassie. If we stayed – Dan. In this case, because we were already here and because we don’t know how Cassie’s illness will progress or whether we will ever make it back we decided to stay. Looking at it through that lens felt right for both of us and Dan has actually been able to let go of a lot of his anxiety simply by seeing how much being here means to Cassie. It was a good choice and it taught us a lot about the challenges of making decisions with cancer. 

 

Time in the Age of Coronavirus

By | Blog

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. 

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.