Beyond Polarity

Cancer Journey Post #6

RELENTLESS IS THE WORD OF THE MONTH. Relentless wildfires. Relentless cancer.  Relentless anxiety. 

Harrowing updates from friends who escaped the wildfires in Lahaina have my stomach churning. And while my post-lumpectomy healing is going well (and I’ve been buoyed up by an outpouring of love), the surgical pathology report that landed in my inbox last week from Alberta Health Services (AHS) makes me nervous. 

Don’t get me wrong; instant access to test results is fantastic. But there’s a downside to all this information. My appointment with the surgeon to discuss the pathology is August 22nd so I’ve got far too much time to decipher the prognosis with help from Dr. Google and an over-wrought imagination! While I remain confident this cancer isn’t likely to kill me, what I’m interpreting causes me pause. 

First, the “margins are clear” (yeah!…there are no cancer cells in a rim of normal tissue surrounding the tumour) but the margins are too narrow for comfort (less than .5 mm wide; they should be at least 2 mm). Does this mean another surgery or a re-incision? 

Second, the “nuclear grade” of the DCIS (not to be confused with the stage of the cancer growth) is Grade III (high)- that’s most aggressive of the 3 types. Damn.

Waiting until the 22nd doesn’t sound like a big deal (… “you have to wait a couple of weeks for the oncological surgeon to meet with you to decipher the pathology or the biopsy results”…). But it can feel like forever when you are in the midst of it all.  The “system” feels opaque & impenetrable.

To be clear, I’m not blaming my surgeon! In Calgary, a city of 1,640,000, there are five oncological surgeons dedicated to dealing with breast cancer–that includes interpreting biopsies, doing the surgeries, and following patients for a year or two. Roughly 800 new cases of breast cancer are diagnosed every year in the city. Do the math; these surgeons are busy.

Is there any way for the healthcare system to do this differently…to put required expertise at the point of the patient in a more compassionate way? I ask friends who spend a lot of time in healthcare limbo.

The U.S. system isn’t necessarily a useful reference point, they report: You may hear quicker but decisions may well be made by an insurance company (“this is what we will pay for this type of cancer in a woman of this age”).

One suggestion? Give other professionals—lab professionals, your family doctor, nurse practitioners—more latitude. But, but, but…pathology experts deal with thousands of tests every day (and aren’t patient-facing), and family docs couldn’t possibly be expected to have the expertise needed to interpret pathology on all the different kinds of cancer. What’s required is an intermediary–someone who has accumulated knowledge about breast cancer & its treatment through experience (not book learning) and can bring that wisdom to patients’ concerns.

A nurse navigator may be the answer! Edith is my designated nurse navigator in the AHS breast health program. When I call, she answers my questions–explains how a surgical re-incision could work and assures me chemo is unlikely if the cancer is not invasive. This human touch helps.

SO YES, RELENTLESS…

But relentless isn’t all bad; it can be a good thing too. What about relentless love. Relentless compassion. Relentless kindness.  

Relentless love & compassion & kindness—waves and waves of support— have buoyed me up these past weeks. I’m so grateful for the phone calls, emails, texts, cards, social media messages, face-to-face visits, gorgeous bouquets of flowers, yummy sushi, decadent desserts (even a whole pecan pie), bottles of wine, homemade soups and chowders, Glamorgan bakery cheese buns, cups of sweet chai tea, ripe B.C. cherries, and artwork, including this lovely monarch butterfly drawn by Julie, age 6. 

WHAT ABOUT RELENTLESS HOPE? 

Rebecca Solnit, author, tells us to wield hope like an axe. I love that directive. It was my mantra running a non-profit to support females in Yemen. For instance: Do whatever it takes to influence ultra-conservative fathers (and complicit clerics) from marrying off their daughters as child brides by focusing, constructively, on the negative health implications of twelve- and thirteen-year-old girls bearing children.

Relentless hope is an action; it’s not a feeling. It’s a commitment to making the best possible future possible. And that means accepting that the future is not yet decided. Seriously–how can we pretend to know what the future holds? Who could ever have predicted the deadliest U.S. wildfire event in the past century to happen in Lahaina, this August, a coastal city on a tropical island? Solnit is also telling us hope can co-exist with heartbreak and grief.

Survivors in Lahaina will need relentless hope.

A relentless spill of negative ooze—from political actors and thought leaders and influencers—will only serve to depress the huddled masses.

So, yes. Relentless hope. For what, exactly, is the question.

Relentless hope that the state will figure out how to provide protection for its citizens in the instance of another Katrina-moment, such as Lahaina represents–where the people responsible failed to alert citizens of the danger. (The internet didn’t work, phones didn’t work, and no one sounded the siren.) 

Relentless hope is also what I’m going to need to get through this cancer journey. That means moving with confidence through Alberta’s healthcare system. A system equipped with gleaming surgical wards, top-notch equipment, leading research, and highly-qualified practitioners. But also, a system rattled by the COVID-19 plague and lurching forward at times, figuring out better ways to compassionately deliver health care to Albertans.