by Jennifer Acee Robinson
(Editor’s note: Jennifer Acee Robinson, a Redondo Beach resident, battled breast cancer while raising a little boy and, improbably, became pregnant with her second child while still undergoing radiation treatment. The following are her day-to-day recollections of this experience, which was also chronicled in her blog, Lovely, With a Side of Terrible)
I am 28 years old. I have breast cancer.
I am two weeks into my first round of chemotherapy and the ominous day in which my scalp begins to tingle and dislodge strands has just arrived. Running my hands across my brown curls, which I suddenly have developed a deep affection for, I come away with an unnatural mound stuck between my fingers. It’s happening. I’m losing my hair.
Immediately after the astonishing blow of my recent diagnosis, I began treatment. I also began my transformation into the dark world of medical appointments, tests, procedures, and bills unceasing – the world of the sick. I am a long way out from fully processing the trauma of this diagnosis, treatment, and pervasive side effects. Today, I am simply putting one foot in front of the other and trudging forward. Today, I want my head shaved. (I don’t need to lose my hair in a prolonged progression of clumpy stages.)
I have enlisted my husband to assist in this endeavor.
Shaving your wife’s head is not exactly every man’s dream. My husband and I have dated since high school, been together a decade now and faced all manner of odd and difficult things that life pitches. But this is a new one for us both.
We each make limp attempts at lightening the mood on this impossibly heavy evening. He asks to start with a Mohawk and take pictures. I make bad bald jokes.
On our way out to our garage, for ease of clean-up, with a chair and hair clippers, I sigh, “Well, I guess I won’t need my keys anymore…” too long of silence while I try to build up the punch-line suspense and he stares at me blankly… “I’m losing my locks.”
My 2-year-old son, in pajamas and rain boots, follows outside and into the action, as though this were a normal family activity.
As my husband passes the noisy buzzer across my scalp, which hadn’t been exposed since I was an infant, I had planned to look up at him and say, “I better not wear a turtleneck, I’ll look like a roll-on deodorant,” my second, prepared bald joke that I had looked up online moments before we began. But I end up not having the heart.
The clippers’ insulting buzz is loud in my bared ears and they yank uncomfortably at the strands as they cut. I transition into simply willing the process to pass as quickly as possible – a tactic I will repeat through many unpleasant experiences over the coming year.
Meanwhile, my son happily pushes the extricated strands around the driveway with a broom. Yes, just another normal evening for us: my husband shaved my head in the driveway while my son stomped through the hair in his rain boots.
The metamorphosis into bald is a pretty significant kick into the emotional struggle of a cancer diagnosis – the full weight of which will take me months of scarf and wig wearing to understand. But overnight, I will become a person who looks so ill that people actually perceive me, with one glance, as someone who is dying.
Dying… I am pushing that possible outcome away. The fear of such a thing will creep out in waves for years to come. But not today.
The first person I let look at my bare, bald head is my happily-oblivious toddler, a good 24 hours after our driveway-revelry. He and I are in the bathtub when he suddenly looks surprised, noticing my naked, hairless head joining us in the tub.
I try to explain with simple honesty that my hair is gone now, which I don’t really like, so I’ll be wearing a lot of hats. My son stares with his huge, hazel eyes and then nods casually. He concludes our heart-to-heart by pointing at my head and saying, “Mommy don’t like that.”
“That’s right son, I don’t really like it like this.”
(And so went the next five minutes with him repeating “Mommy don’t like that,” as he pointed at my head and tried to process what I told him.)
Over the next week, as my baldness readily morphs into normal for him, he will occasionally recall this conversation and repeat the mantra. With beautiful succinctness and accuracy, my toddler will walk around proclaiming, “Mommy don’t like that.”
In the coming months, I will undergo five additional, brutal rounds of chemotherapy, a bilateral mastectomy with sentinel node dissection and reconstruction that will include two follow-up surgeries, an oophorectomy that will spiral me into a permanent medical menopause, and five weeks of radiation to my chest that will attempt to burn away any stray, remaining cancer cells. I will reach lows of despair and pain that will never leave me. I will lie broken on the floor, bleeding and sure death is going to steal my son’s mother away. I will cry. A lot. I will retreat into the lonely darkness of a failing body.
There will be an overwhelming flood of things “Mommy don’t like.”
But then I will begin to heal. My brown curls will regrow. My energy will return. I will crawl back to joy and light, at first in small ebbs forward, learning along the way to manage my scarred, broken body; learning, through the months of increasing normalcy, to see beyond my fear of reoccurrence to a life still unfolding.
I will raise my son. And eventually, one day, I will even go on to have a daughter.
How lucky I am. The beautiful, difficult world will continue for me – all the more beautiful for the difficulty endured.
* * *
Standing in my children’s shared closet, my eyes scan across the rainbow-pastels of my daughter’s wardrobe to the dark, little-man colors of my son’s side. There, amongst the blues and greens, the Angry Birds, the Star Wars, and the Teenage Mutant Ninja Turtles, there is one light pink shirt hanging crisply on its hanger.
Simply but heart-wrenchingly across the front it reads, “I wear pink for my mommy.”
My son is generally afraid to wear this shirt because he knows there is something special about it. But today, his thin shoulders leaning against my hip, he reaches out for it.
He doesn’t remember the year I was bald or even the year after that when I had strange, manly-short hair. He doesn’t remember the many months of family members coming in rounds to make a meal or change his diaper because his mommy was too sick to do it. He doesn’t remember the countless hours he spent in medical waiting rooms, eating string cheeses and pushing his toy cars across dirty carpet and tacky wallpaper.
“I think I should wear my fight for mommy shirt today,” he declares with unusual decisiveness.
His understanding of what I’ve been through is so vague, his comprehension of the gravity so minimal.
“Would you like that, Mama?”
I rest my hand atop my kindergartner’s head as those huge hazel eyes search my face for approval.
“Yes,” I reply. “I would like that.”
Jennifer Acee Robinson lives in Redondo Beach with her husband and two children. You can read more of her story at: lovelywithaside.blogspot.com
Q&A with Jennifer Acee Robinson
Where were you when you were told you had cancer? What was your immediate reaction?
I got a phone call from the OB-GYN’s office that I needed to come in to see the doctor regarding my biopsy results. Now that’s never good. I knew. It will sound strange, but what I felt, sitting across from the doctor telling me I had cancer, was hope. I had been extremely sick with severe joint inflammation for about a year leading up to the diagnosis. I felt like maybe we had finally found what was wrong and could treat it.
What were the challenges of going through cancer as a mother of a toddler? And did this in any way give you greater resolve in your fight?
As any parent knows, a child pulls you out of yourself. Your focus is on their needs and their well-being. This was a good and bad for me during treatment. It was difficult to take time to rest or recover when that meant more time away from my son, and alternatively, a focus on him kept me both distracted and connected to joy.
If you were going to give one piece of advice to others fighting this disease, what would you tell them?
I was compelled to pay attention to the positive things that came out of whatever I was going through. That may sound more Polyanna-ish than I actually was. But I did find it helpful to really notice the good: the quiet morning at home when I was on medical leave instead of at work, the visit from a friend who wouldn’t have come otherwise, the activities and circle of people I spent time with at the Cancer Support Community. When I could look around and say, this good wouldn’t be happening if I didn’t have cancer that would help me cope with the dog-pile of bad that also accompanied the disease.
You utilized the support services of the locally based Cancer Support Community. What form did this support take, and what did it mean to you?
In spite of thinking I didn’t want to at first (does anyone ever want to?), I attended a support group of other newly diagnosed women for the first year of my treatment. Connecting with and learning from these women was big in a time when I was overwhelmed with decisions and emotions. I also went to lectures and borrowed books and I participated in a number of activities that I wouldn’t have otherwise know about, thanks to this excellent resource right here in Redondo Beach.
In your writings, a pervasive sense of gratitude, and a sense of humor, always emerges — even in blog entries made in the depths of your fight with cancer. How were you able to remain grateful in the face of such difficulties?
I think we all wonder what sort of person we would be in the face of our worst nightmares. The truth is, you are the same person you were before. There were times I reached a low of pain and darkness I am sorry to know exists, but all the in-between times, I could still be myself. I could still appreciate the love and beauty of life.
None of us is entitled to a perfect life. And certainly, none of us has it. What joy we do have is made in our attitude, our gratitude, our selflessness.
You kept a blog, lovelywithaside.blogspot.com, throughout your experience with cancer. What was your intention in doing so, and did it help you in your fight with cancer? And what about that title, “Lovely, With a Side of Terrible?”
(Wow, you ask a lot of questions. What are you, a journalist?) So, I wrote things down a lot during the throes of my treatment, as writing is a hobby of mine, but I didn’t start sharing them until later. I had more energy and in some cases better perspective to be able to tell the stories afterward, retrospectively. I started noticing a place for what I could share – an opportunity to commiserate that life is difficult but also such a precious and miraculous gift.
I didn’t give a lot of thought to the title; it just seemed to fit the moment I thought of it. Because isn’t that all of our lives: managing bits of terrible into the overarching loveliness.
What was your lowest point? And when was the first time you felt able to exhale, to feel that you had gained the upper hand in this fight?
The experience didn’t follow a linear path of low to normal again. There were so many horrific times: times I couldn’t walk, couldn’t stand another needle prick, couldn’t accept being told I wouldn’t be able to have a second child, couldn’t cope with the idea of dying. Thankfully, I generally reached a reprieve of acceptance between the lows. I still vacillate some between frustration and peacefulness, but, with the birth of my daughter, I put the worst behind me and began to feel a return of normal.
What was the experience of becoming a mother again so shortly after going through a battle with cancer?
Actually, it wasn’t shortly after, it was during; I became pregnant in the middle of radiation treatment. It was a shock – incredibly improbable – and a rocky first trimester. But I had amazing radiation oncologists (Daniel Hovenstine and Thyra Endicott) and my baby girl was the rainbow at the end of my storm. I have never seen God move so clearly in my life as with the healthy birth of that little girl – who came to me against ALL odds.
Are you a different person for having gone through this experience? If so, how?
Of course. In many ways. Above all else, I have a perspective born of such profound and profuse adversity that I can better value (and devalue) the highs and lows of everyday life. Oh, and I appreciate my hair a lot more.