One Year

“So this is Christmas, and what have you done?”

My first cancerversary. December 19, 2019 was the day my life changed forever, and here I am one year later. 2020, the worst year of all.

I’m a Christmas baby who loves all things Christmas. In non-pandemic times I protect the holiday season. I carefully carve out time for the five of us to enjoy this magical time. The holidays are a very infrequent time for our household to breathe a sigh of relief and for these lawyer parents to actually take a day without working. It’s inconvenient to say the least that my cancer diagnosis landed smack in the middle of this time. Special thanks to the doctors who negligently pushed me off for three and a half months, or it would otherwise have fallen in September.

Christmas will always hit a little differently now, but hopefully last year’s will remain the worst of the worst.

I was worried about how I would feel about this bizarre milestone. As it crept up on the calendar I tried to think of ways to distract myself. Several months ago when the pandemic was not looking quite so terrible, I booked another trip to Disney for this week. I thought that heading back to re-claim the family fun would help us all heal. Terry and I desperately need a respite from our day-to-day lives after shuffling pregnancy-newborn-cancerland-pandemic-virtual-school and our careers for the last couple of years. Alas. As numbers continued to rise I was forced to reconsider, cancel yet another trip, and prepare for idle time at home.

I knew I could not ignore the monumental date, so, once again, I sat down to reflect. Many times over the last year when I sat down to write a piece of my experience I was overcome with emotion. Tears streamed down my face while I attempted to put to words the complicated thoughts that filled my mind.

Today there are no tears.

The grief and pain that have steered me for the past year are still with me, but they’re no longer calling the shots. I guess that “strength” that everyone told me I had within me has finally gotten back into the driver’s seat. I finally feel like myself again.

But for, of course, my less than desirable hair situation.

“Another year over, a new one’s just begun”

From a medical standpoint, I am done. There is nothing more to do. I did not need radiation since no lymph nodes were involved and I had a pathological complete response to chemo. I “graduated” to the breast cancer survivorship program back in June, and I have visits at the cancer hospital every three months.

I had a bilateral mastectomy in June and reconstruction in November. From a plastic surgery standpoint, I am also done.

People ask if I’m “cancer free” or “in remission” and I don’t use any of these terms. I am just living my life and hoping there is no cancer anywhere in my body, no different than any of you.

Unfortunately though, unlike most of you, I have to be hyper-aware of anything weird going on with my body. The other day I had a headache and I ran through the litany of items that it could be: Not enough coffee? Dehydration? Covid? Too much wine? Cancer metastases to the brain? On most people’s list, covid is the big source of stress. On my list, Covid is not the worst case scenario.

A few months ago, around the time that social media was losing its collective mind over virtual school, I noticed some hip pain. When it lingered for over a week, I knew I had to call oncology. My team thought it was probably just strain from running, compounded by the three ring circus they put me through over the past several months, but ordered an X-ray. Triple negative breast cancer, when it metastasizes after early stage treatment, usually comes back quickly and aggressively.

I put the X-ray off for over a week, hoping that the pain would subside on its own and knowing that it would be gut wrenching waiting for the results. When I finally worked up the nerve to have it done the anxiety of waiting for the results was some of the worst that I ever experienced. The lifespan for stage four TNBC is grim. Thankfully, I am FINE. I ran to the bathroom to throw up when I got the phone call. This might even sound like an over-reaction to someone who has not had to confront their own mortality, but scans are absolutely harrowing for someone who has had cancer.

I guess this is life for me now. Ninety-five percent moving forward and living my best life and five percent a black hole of the darkest breed of anxiety. It is often said that healing is not linear. Like the market, the trajectory is upward overall, but some days are quite bear-ish. The bull always manages to come roaring back though, a little stronger than before.

“And so this is Christmas, for weak and for strong”

Looking back over the past year at my writing is odd. It’s a bit like a diary about the most painful experience of my life with the pages available to anyone with a wifi connection. Many people have had a lot of opinions about my decision to be so open with this time in my life. Reflecting, I have revisited what motivated me to put words to any of it to begin with.

When I was first diagnosed, I sat squarely in the eye of a hurricane. Lyrics from the popular Broadway show, “Hamilton”, blustered through my brain.

“In the eye of a hurricane there is quiet, for just a moment, just a yellow sky”.

The very moment that Terry and I reached out and told one person outside of ourselves about the “big C”, the wind started to pick up and it started to spin. I made Terry call my parents, I could not bring myself to let the words cross my lips. Eventually, I made some calls. I texted a lot. Family members were finding out. Friends. The chain of people started to grow. Inevitably, folks reached back out to those closest to me to find out updates. In general, folks did not want to bother me with questions, so they naturally leaned on my inner circle. It felt like a whir of conversation and buzz around me and it was oddly quiet from where I sat. It made me uncomfortable that so many people were discussing what was happening with my body and my life.

I filed a motion to quash the whispering immediately, and took control the narrative by writing it myself. It is MY narrative, after all.

Through the process of writing, I dealt with the pain head on. I was very angry and confused but I did not suffer from an obligation to hide my feelings. Airing my pain out for the world to see helped me to release it. Many people found this refreshing and some found it repugnant.

I can’t say that I had any particular motivation for continuing to publish my thoughts other than honesty was the only thing left that I had the capacity to feel.

As I delved deeper into the life of a cancer patient I was shocked at how much of a shroud still hung over the process. I was also horrified by the things people said to me. I often compare the experience of having been treated for cancer to the experience of a new mother. It’s a time in the life of a young person when suddenly everyone feels like it’s appropriate to comment on the woman’s body, the process of birth, or how to properly raise a child.

Getting advice on how to deal with cancer from people who never had cancer is like getting parenting advice from people who never had kids.

Women (and parents, but mostly women) have come to decry this type of behavior as “mom-shaming” in the past decade or so. A woman’s body is not up for debate. The decisions that parents make about raising their children are not an open topic for community forums.

Likewise, the body, experience, and decisions of a person being treated for cancer are not up for debate. There is an extraordinary amount of pain that a person being treated for cancer has to bear. It shocked me that anyone would contribute to this burden by hoisting their pre-conceived notions upon me as well.

The “mom-culture” framework is a useful lens when talking about the body-altering procedures that come along with cancer. Some mothers look at their stretch marks as badges of honor. Some can’t stand them. Some are upset by the trauma the accompanied their birth process, or let down that they did not get the experience they hoped to have. As a culture, we are learning to get better with our words in times like this. “At least you have a healthy baby,” is really dismissive of what a woman has endured. Of course mothers are happy when their babies are healthy. It does not change pain or trauma of mother’s birth experience that went sideways.

“Save the ta-ta’s,” or any type of phrase that sexualizes breast cancer in a way that is different from cancer or the lung, brain, blood, prostate, etc. has always made me cringe. I confidently chose to forego my “ta-ta’s” for my life. It seems like folks want to forget the “cancer” part of breast cancer. Unfortunately, it’s not sexy just because it originated in a breast. Breast reconstruction is not a “free boob job” or “breast augmentation” any more than a cesarean section is a “free mommy makeover.” Surgery is surgery. Amputation is permanent. This weird terminology cheapens the experience.

Dismissive talk plagues the entire cancer community. Folks told me to “be positive” or “look on the bright side” when I could barely comprehend what was happening to me. I laid awake at night worrying that my endless spiral of anxiety was causing my cancer to grow or spread because I did not have the ability to be positive enough that day. Sometimes I would wonder what kinds of things people would say at my funeral. I would subsequently panic in a mistaken belief that negative thoughts were causing the cancer to spread. Then immediately Google “what causes cancer to spread,” and then continue to freak out when lack of sleep was listed among the search results.

Sure, I made TikToks and wore rainbow wigs and unicorn suits and eventually found my way. But there were some very dark moments, even on the days when I greeted the world with a smile.

With this painful experience, sometimes I just needed to sit in my grief for a minute. Explaining to a friend or loved one about how much fear and sadness I was carrying let me share the burden, even just for a moment. I really appreciate everyone that just let me be sad when I needed to be sad.

I wrote about a lot of this, in retrospect, not to roast the people in my life, but because it was truly baffling to me. This is something we really need to change about the way we discuss cancer and probably a lot of other chronic illnesses and conditions. I could tell that people cared about me a lot, but for some reason no one could see that they were putting their feet in their mouths.

Folks often ask me what to say or do when someone in their life has cancer. It’s the million dollar question. Everyone is different. There is no million dollar answer. The only real advice I am able to pass on to anyone who loves a person afflicted with cancer is simply to listen.

“And so this is Christmas, I hope you have fun”

At some point after Penny’s birthday, I was able to turn the corner.

The hardest part for me was always that I had to do all of this newly postpartum and that I was completely robbed of my time with my last baby. This aspect still stings the most, and I think it always will. The external tie that binds a mother to her child is through nursing. To have that part of me poisoned and severed pierced my heart deeply. When October finally rolled through and I no longer “should” have been nursing her, I was able to let go of a massive piece of my daily struggle.

I talk about this all the time, but I was very much hoping to take our kids back to Disney by now. This pandemic has certainly added an additional hurdle to getting past cancer. I have booked and cancelled more Disney trips than I care to admit this year. I don’t know if I’ll ever do Christmas at home again after this. I do know, however, that I am going to focus on the five of us in our little nuclear family and lean into maximizing fun for our kids.

Christmas, after all, is about the kids.

And so is life. My life is about these three little munchkins and doing everything I can to fill them with happiness and set them on a course to do the same. I have had a lot of fun along the way and I will continue to have fun. Even though we have spent a ridiculous amount of time together in this house this year, I can’t imagine being away from them for very long going forward. I live for the three of them.

When you are faced with the possibility of not getting to see your kids grow up, you look at the world a little differently.

“A very Merry Christmas, and a Happy New Year”

I sincerely hope with all of my heart and soul to leave cancer behind in the blazing dumpster fire of everything that was 2020. Fear lurks in the back of my mind. I don’t know if I’ll ever feel comfortable enough to declare that I survived cancer until I die of something else. (This is not an invitation, by the way.) Although, truthfully, I have been surviving cancer for exactly one year as of today.

I also do not have any extremely profound wisdom at the end of this. I am changed in small ways that I am comfortable with. I am more direct. More honest. More open. Less patient with excuses. Less frivolous with my time. More focused on my immediate family. Less concerned with the opinions of others.

Cancer freed me of the inclination to hold back. Time is precious and sentiments should not be left unsaid. It makes people uncomfortable, but what is the point of living a life that is smoke and mirrors and charades? The big emotions, the hard conversations, the soul searching, the declarations of love - these are secrets of a life well lived.

My marriage was tested in ways I never could have imagined by cancer, cancer treatment, and the global pandemic. I wrote, about a year ago, that “the best steel is forged in the hottest fire.” We remain, more than ever, a team. I very much look forward to years from now when we look back with befuddled bewilderment at our ability to keep our heads above water as the tsunami crashed down on us in 2020.

Last year before we left Disney in a frenzied fearful rush, we took the kids into one of their many flagship souvenir stores to do some “guilt shopping.” (Guilt shopping was to let them loose with a dollar amount to spend after we told them we had to leave Disney before had done everything their little hearts had hoped to do.) The enormity of the store felt like the enormity of my problems. Tall trees sparkled among the displays and cheerful Christmas music jingled in the background. As I wandered through the aisles, frightened tears streamed down my face from behind my sunglasses. A Christmas ornament caught my eye. I purchased it and put it away. I loved it but I could not bear to hang it on the tree when we got home.

It’s a figure of Dumbo being held by his mother, a scene from the song “Baby Mine” from the movie Dumbo.

“Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine”

A year ago I was not sure if I would be here this Christmas. I did not know if Penny would ever know me. I wanted her to understand how deeply sorry I was for the tragedy in our story. I am hopeful that this is only the beginning. Some day, many years from now, we will look back and know that it was never a Shakespearean tragedy, but instead a great Shakespearean comedy.

I did not bring these magnificent children into this world to leave them at this young age. I need to raise them and teach them about this wonderful and terrible world. I need to indulge them in the grand and mundane joys of life.

I need to take them to Disney World.

Heading into a new year of surviving cancer, I continue to sit atop of the world dripping in fortune as I remain delightfully, steadfast, and most devotedly, their mother.