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Right after the diagnosis, Cassie started looking for resources online to learn more about metastatic breast cancer and to learn from the experience of others. She started following roughly six bloggers on a regular basis. (Three of those women have recently died. Such is MBC.)

On one of the blogs Cassie follows, we came across this quote: 

“Oncoming death is terrible enough, but worse still, is oncoming death with time to spare, time in which all the happiness that was yours and all the happiness that might have been yours becomes clear to you. You see with utter lucidity all that you are losing.” — Yann Martel, Life of Pi

Every time we read this we cry. Every time. But, we wanted to share it because it really sums up what we are going through. 

We are so grateful that we still have time together to try and enjoy life (many people with late stage cancer wind up with little to no time). Yet metastatic breast cancer is a lonely road. You can look fine on the outside but feel crappy on the inside. It can seem like life is normal when it is anything but. It is hard for people to understand. This isn’t – go through treatment and you’ll be cured. It is ongoing. Relentless. You are always living with the knowledge that unless you get hit by a bus or something crazy, that this is what will kill you. You don’t know when exactly (although 75% of those with MBC don’t live beyond 5 years.) But it’s coming. 

Everyday it’s a challenge to stay positive. Our mental frame is something we work on together from the moment we wake up. It’s difficult not to focus on all that we are losing. It’s difficult to avoid asking ourselves — every time we do something fun — whether this could this be the last time? It’s difficult to explain to our friends and family what this is like day-after-day because we only see them episodically and because we don’t want talk of cancer to dominate every interaction.

The one thing that makes any of this tolerable is that we also have utter lucidity about what matters most right now. We know we want to spend our time with each other and with friends and family. We know we need to practice self-care and we know that we need to match the relentlessness of the cancer with our own relentless and sustaining love. In this way, the clarity of what we are facing is both a daily burden and a blessing as it helps reveal and keep us grounded in the things that matter most.

One of the most challenging things about this diagnosis is the lack of control and lack of structure it has brought to our lives. How do we make sure that we own each day and create some structure for ourselves while also recognizing that Cassie has many days where low energy levels require her to do less? How do we learn to be okay with days that are filled with less doing and more being?

It’s strange to ever write the word lucky in relation to a late stage cancer diagnosis but we both feel lucky that we have been able to step away from our jobs. Cassie is not working at all and Dan has cut back by around 90%. However, without full-time work to occupy our days, we find ourselves making it up as we go along. Some days we have the energy to do a lot and keep a pretty full schedule. We exercise, see friends for lunch, work on a house project, go to a movie, etc. Other days taking a shower is about all we accomplish. (Some days not even a shower!) We are realizing that we have to be OK when we are not actively out doing things even though we are both doers and are both used to active and busy lives outside of our home. Learning to just be is new and hard but also grounding, liberating in some ways, and absolutely essential given our current situation.

This is made all the more difficult by the fact that we both almost always wake up feeling sad and like our lives have gotten really small revolving around the cancer. Fortunately, along with this morning sadness, we both have the most energy early in the day and we now know that we often have to deliberately focus this energy on re-centering and re-framing for the day ahead.

We’re coming to learn that each day (whether a doing-day, or being-day) is best with a little structure and intentionality. We try to have regular scheduling meetings to talk through the week ahead and the weeks to come. We have designated our mornings “self” (thanks Browns) where we each schedule whatever we want. For our afternoons and evenings, we try to plan something from at least one of our “buckets” and we try to have a couple of fun hanging-out “projects” in our back-pocket. For example, we recently completed watching every movie in the Marvel Cinematic Universe in story (not release) order.  On being-days, even just naming that we are going to stay in and read or do a crossword puzzle is helpful. Maintaining this level of intentionality about our days though is much easier said than done.

One particular challenge is that we don’t know in advance whether it will be a doing-day or being-day as this depends on how Cassie is feeling and her energy level. So ideally we would have two plans for each day but instead we are lowering the bar and just trying to take the being or doing as it presents itself. Within all this uncertainty, one thing we know for sure is that for us, every day is better when it includes multiple things that keep us connected as a couple. This could be a dog walk or a game of cribbage or entertaining friends. We have learned the hard way that unless we focus explicitly on connection we can easily drift into just doing our own things. And for us, right now in particular, living parallel lives simply does not work! Whether doing or being, togetherness is key.