Plan, Plan, Plan . . . Pivot

On September 26, 2021, I shared my breast cancer diagnosis with friends I hadn’t told personally in a private Facebook post, writing “information has been uniformly good: pathology is favorable, I have no genetic markers, it is small, and all indications are it remains localized.”

At the moment I hit post, I strongly believed I would require surgical intervention and cancer would be behind me in a matter of weeks.

I had discovered my cancer on July 4^th and contemplated not sharing my diagnosis, but gossip being what it is, someone heard something and took it upon themselves to investigate by calling a variety of my friends to prod for information – it was clear that if I didn’t share, people would fill the vacuum with a story that bore little resemblance to the truth.

Virtually all of the information in my initial cancer “announcement” proved to be false – and thus began the greatest lesson of my cancer journey: Plan. Plan. Plan. And be ready to pivot when all of those plans have an atom bomb dropped on top of them.

Fortunately, I am well-suited to this tactic. Anyone who has vacationed with me has mocked my detailed binders full of travel information, alternative modes of transportation in the event there is a problem with the original plan, possible flights to take should a later flight result in a missed connection . . . And they are equally familiar with the fact that I am happy to toss out my carefully curated itinerary if we are in love with an activity and want to stay longer, see an interesting sign on the highway that diverts us, or a local tells us of entertainment we simply cannot miss.

I was entirely unprepared, however, for information regarding my diagnosis and treatment to swing from one compass point to another more frequently than a metronome swings from, beat to beat . . . and far less predictably.

In the ensuing weeks, virtually every aspect of my diagnosis changed. My initial MRI revealed a third tumor. Further pathology indicated I was “triple positive” rather than the more common “hormone positive” my initial biopsy indicated. My mammogram demonstrated my largest tumor was 4.3 cm rather than the 1.8 cm indicated at biopsy and presurgical screening had failed to identify that my cancer had made itself at home in my lymph nodes. In fact, my “healthy” breast, removed only because I elected to have a double mastectomy, revealed a tiny lobular cancer – which had not been previously detected.

My plan to choose a double mastectomy to avoid radiation went out the window and my date book filled up with chemo sessions, second opinions . . . and later radiation treatments and additional prophylactic surgeries.

There were dozens of pivots . . . large and small. Good and bad.

Arriving on chemo day to discover my insurance wouldn’t cover the version of my medication in the pharmacy. Trying to hold in my distress at believing I would need to return the next day instead. Having the pharmacist visit to tell me the mix up in brands was his fault and the City of Hope would be covering the cost of that drug so my treatment could proceed as scheduled.

Discovering my platelets weren’t rebounding adequately and further chemo infusions would need to be spaced farther apart – delaying radiation, so I would not be done by Daphne’s graduation as I had fervently believed.

Making the decision to extend treatment for an additional year with Nerlynx,  an oral medication that would pass the blood brain barrier and combat my cancer via an additional mechanism. Discovering while gradually building up to the full dose that, by Day 9 of 365, I had lost 14 pounds and it was necessary to temporarily discontinue the treatment.

Walking out of my oncologist’s appointment on February 16, 2023 having made the abrupt decision together with my oncologist to permanently terminate Nerlynx . . . suddenly being free aside from my daily hormone blocker.

While I already have possessed some of the skills necessary to navigate the sudden changes of direction inherent in undergoing cancer treatment, my experiences from the Summer of 2021 through the Winter of 2023 honed those skills. The skill set necessary to maintain the highest quality of life while being subjected to the demands of a disease beyond my control has made me able to take advantage of exciting opportunities that present themselves, which I may previously have dismissed.

Recently, cancer tossed yet another redirection my way. An acquaintance has become a friend. I have had the opportunity to get to know the delightful Cheri as she has welcomed me into her classroom to share my experiences and the knowledge I have gained from them with her students. Cheri is a remarkable educator – her love of her chosen profession emanates off her in waves. Her students give her their complete attention and clearly feel confident in her classroom thanks to Cheri’s obvious affection for each and every one. And I owe Cheri gratitude not just for giving me the opportunity to get to know her students a bit but for being the latest supporter of my Susan G. Komen fundraising efforts.

My greatest advice to anyone undergoing this journey is to plan – constantly. Acquire information. Determine how you are going to react to it. Lean on those closest to you in deciding how you are going to approach treatment.

And when all of your best laid plans go to hell in a hand basket: Take a deep breath. Pivot. And make a new plan. Over and over again.