12. Communication in Relationships

Since I’ve been writing more lately, I’ve been thinking a whole lot about communication -- about the meaning of words and their etymology, how we choose and use them, and how they’re received.  For example, Wikipedia states that the word etymology derives from the Greek word etumología, meaning "true sense," and the suffix -logia, denoting "the study of."  Ironic, as I’m also in the process of studying my true sense?  

The word berserk is a little more interesting.  From the Oxford Dictionary, I learned that the word came into English early in the 19th century, used to describe an ancient Norse warrior who fought with uncontrolled ferocity.  Derived from the Old Norse berserkr (noun), itself probably from combining bjorn (bear) and serkr (coat).  I know you always wanted to know that!  There I go down the rabbit hole… was bazooka named after a berserker?  And so it goes.

I knew when I started this blog that there would be a time when I’d explain how the information that changed our lives was delivered to Dave and I in the ER, and how we passed that information on to our family and friends… maybe even parlaying that into how as someone who is facing a pretty big challenge experiences it.    

I’ve said before how special the ER doc is that Dave and I met in perhaps one of the worst moments of our lives.  He sat with Dave and I for about an hour after the scans were complete and my pain had been stabilized and outlined what he thought the process would be moving forward.  In no uncertain terms, he told me that my life experience would definitely involve some sort of combination of chemotherapy, radiation and surgery, and maybe all three.  And on the heels of that, made certain that I knew I absolutely needed to be tenacious about the quality of my care.  That people who are tenacious and keep digging are the ones that prevail.  And then ten minutes later, made sure to reiterate it again.  In those moments, he held hope that I would be one of the lucky ones.  Here are the high level points of what we came away with:

  • On our journey, if any doctor that we come across is a naysayer, then it’s time to find a new doctor.  If we hear something that isn’t in line with moving forward, such as “it’s impossible,” or “there’s not much we can do,” then you look for those who say that there is hope and many things to try.  
  • It’s important to keep looking for answers.  Keep researching, keep exploring. Don’t get complacent or too comfortable.  
  • Never believe that the status quo as the be-all and end-all.
  • Given the severity of my diagnosis and the symptoms I was experiencing, what I did for a living (and my career) were no longer top priority for now.   I needed to make my life, my wellness and care my full-time job.  He made sure that Dave understood what this really meant while I stared off at the ceiling for a while.  
  • Treatment should not be determined by whether or not if would affect my hair.  To quote, “You’re fighting for your life.  Who gives a fuck about hair?” And I would like to note that his language was only after I’d dropped a few f-bombs myself.

It took Dave and I almost a week to start telling our families and our friends.  We needed a few days to get used to our new reality and for me to heal a little, but we were also stuck on when and how to tell our families.  Any considerate person tries to save others from as much pain as possible, and we are very considerate people.  Do we save them from this pain and anguish?  If not, do we at least do it for a little while?  We were in hell, and cognizant enough not to want to bring others into the fold just for company.  Seeing both sides, we were stuck on what to do.  So, we went back to the ER and met with “our guy” to ask his opinion.  Part of his job is delivering the worst kind of news, if not daily then at least a few times a week.  He is an experienced ER doc, and at least figured out what works and what doesn’t.  

His initial words of advice stayed with me, even in my fentanyl-induced drug haze.  What he specifically said about communication in all of our conversations really stuck, and was what we used to deliver our show-stopping news.  Tips that you can use to deliver any type difficult news.  His advice:

  • It’s important that you bring your friends and family on the journey with you, it’s what life is about.  
  • It’s not fair not to tell them, despite your best intentions to protect them.  
  • It’s waaaaay too much for the two of us to carry on our own, we need their love and support.  
  • You need to share information as you get it, it’s difficult for others to receive it all at once.  Bite-sized pieces are best.
  • In starting these conversations, when people hear “stage four cancer,” they mostly think, “dead person walking.”  Come into the conversation with some words to alleviate that immediate fear.
  • Deliver hard news like you’re talking to a six-year-old.  Say one sentence and then leave a pause.  Leave lots of room for questions and reiterate that it’s new for us too, and we’ll all figure it out together.  

And so, I made my list of five things to say, and wrote them on a sticky note, which I consulted during each of our conversations: I’d been to the ER with acute abdominal pain; I had had an ultrasound, CT scan and liver biopsy while there; I’ve been diagnosed with stage four metastatic liver disease; they didn’t know what type of cancer, or where it has originated; and, we had an appointment set with an oncologist and would share more information when we had it.  That was it.  Then we answered follow-up questions as best as we could.

Information like this spreads like wildfire.  Sometimes people share things with others, often without considering whether or not it’s their place to share it because it’s too big, or too scary, or because they feel like they have something important to share and that others have a right to know.  I do wish that we’d had time to tell all of our people instead of some of them hearing it from others, we didn’t realize in the moment that we should have asked for it.  In this situation, when it’s already done, you have to let go of it.  I still don’t particularly like hearing other people talk about my diagnosis while I’m within earshot, but it’s just not news that can stay proprietary.  It was my body and our reality, but not ours alone.

In hindsight, the thing that I appreciated most from the ER doc was the way he pieced together all the information, in what he knew would be an overwhelming situation.  He delivered the initial news on my diagnosis so kindly and so matter-of-fact to Dave and I (totally!) like we were six-years-olds.  It was so incredibly helpful.  He shared the story of the history of cancer in his family, which connected his story to our story.  And in that, he also connected and endeared himself to both Dave and I.  It was in that connection of stories that he reiterated how important tenacity was for figuring out quickly what type of cancer I had (and therefore making the best decision on treatment options), and prognosis, and how little hair really mattered.  In the time since those conversations, his words often ring in my mind, because who really gives a big piece of chocolate fudge about hair when your life’s on the line?  That level of endearment holds true today.  When I had to go back to the ER on New Years Eve with my DVT, I’ve already described how much like a family reunion it was.  Amazing, really.

Words have the power to connect, or disconnect.    

A story about words that fuel disconnection.  I’ve written about how emotionally challenging the last couple of weeks have been.  While I was at the hospital getting my last CT, the nurse administering the IV contrast needed for the scan asked me about my diagnosis and treatment.  I gave the high level points, which prompted an unsolicited story about a friend who was diagnosed with stage four cancer during Christmas and the New Year, in a way that was apparently so remarkably similar to mine, and that she really wasn’t doing well at all, and was already in hospice and on the way out.  A lovely, uplifting story, especially while I was in the process of doing the thing I needed to do to get more information on my situation.  We had a little snafu with my port during the procedure, which then started another story about how many ports they’ve seen crap out and that it wasn’t unusual at all for them to just stop working… you know, requiring another minor surgery to have it swapped out.  All the while I was nodding along to her story (I was completely captive after all, attached to the CT machine), I kept internally repeating my reconsidered belief: I have ways to positively impact my treatment outcome, I have ways to positively impact my treatment outcome, I have ways to positively impact my treatment outcome.  I have to wonder what the point was of telling me those things?  It certainly didn’t make me feel better, or connected to this human being!

Can we please just keep it real, and mostly normal?  The only thing that has physically changed since my diagnosis is that we all now know that I have abnormal cells living in various parts of my body.  Cells that will hopefully move out sometime soon.  Mentally and emotionally there have been some big changes, but all-in-all, it’s spurred radical growth -- no pun intended -- in both those areas.  

I’ve had friends who’ve left meek (read: weird) voicemails, ones so unlike the ones previous to diagnosis.  I’ve had those who’ve told me things about what’s going on with them that I don’t have the capacity to help carry or process at the moment.  I’m fighting for my life over here!  I usually delete the voicemails before they’re done and steer conversations back to more neutral territory, or tell them outright that I don’t have the capacity to deal about it at the moment.  That said, I do look forward when I can deal with it, especially because of what that will really mean!

Thich Nhat Hanh says, “it's important to find the right time and place to communicate.”  For the record, I would like to say that if you’re anxious, fearful or sad -- about my situation or something unrelated -- it’s not the right time to communicate with me, or with others.  The best thing to do is whatever you normally do to calm yourself and reground, and then reach out.  In the context of all that I’ve learned about those who’ve achieved their own radical remissions, positive emotions and feelings of love, joy and connection are immune-building, and those of anxiety, fear and sadness are not.  Simple, but not easy.  We are complex beings, after all.

Funnily enough, I’ve also been reminded of my own weirdness about words and how I receive them.  I am also known to be particularly sensitive to tone.  Right, Dave?  Consider the following statement in two different emotional states.  A friend calls with joy and laughter in her voice and says, “Cass!  You have so many people who love and support you.  Don’t ever give up!” and the same statement from a voice laced with worry and sadness, “Cass… (dramatic pause), you have so many people who love and support you, you know.  You can’t give up.”  Who would you believe?  The former spreads joy and laughter.  The latter sounds a bit like a lecture and spreads worry and sadness, and most often without intending it.

Throughout this journey, there has been someone who checks in with me frequently via email, stating that I’m inspiring, or that my posts/mindset/tenacity/whatever is inspirational.  It usually elicits an internal eye-roll.  I’m not in this to be a role-model, this blog is completely self-serving!  The same person wrote me an email recently about how a particular post had been so helpful in the way they were dealing with their current circumstance.  And those words totally landed in all the ways those others were meant.  Intuitively, I know that all the words should have landed in the same way, and that’s mine to own, process, and then change or resolve.  My work is to know and understand what others might mean when they don’t choose the words that I would, to know their intention.  Humans are weird, aren’t they? Or, it that just me?!

Therefore, please take everything I’ve just shared with a grain of salt.  Oh, and don’t read this if you’re dealing with heavier shit than I am at the moment.  Next time, I’ll make sure to open with that.

Love you!