Time Travel Jet Lag: Unpacking 4 Different Perspectives

TW: sexual assault, abuse

I am not sure if it was the serious jet lag from twenty-four hours of transit across nine time zones, or the rough reentry and integration back into anything-but-normal life. Or perhaps it was the brutal stripping away of female reproductive rights and the threat of repealing so many other human rights, all whilst ensuring that the leading cause of death in children will continue to be gun violence. Who knows? Could be a combo of all of these. In light of these dystopian gems, plus life in general right now, perhaps it is not surprising that it has taken me a full week to process just the tip of the iceberg of emotion brought on by the events of this past week.

But as a pediatrician whose clinical niches are trauma/adversity, resilience, and equity, as well as children with medical complexity… and as a survivor… it is time to emerge from the brain fog of this past week. Personally and professionally there are so many layers of this to unpack, that it made unpacking the actual luggage from my recent trip seem far less daunting by comparison. And like all unpacking, there is bound to be at least a little dirty laundry.

One of the realities of caring for children with special healthcare needs is that for a certain subset of my patients, a pregnancy could be catastrophic, resulting in death of both my adolescent patient and the fetus. Additionally, my patients with intellectual disability, severe autism, or other neurodevelopmental disabilities are already at higher risk of sexual assault, which is, in and of itself, a terrifying experience for them. Now try to imagine the added horror of becoming pregnant for a patient with limited cognition and/or traditional verbal capacity. My own mind cannot process that fully. Maybe it’s the jet lag.

Furthermore, and please bear with my science nerd perspective for a minute, my work in trauma/adversity, resilience, and equity is aimed at the goals of screening for these factors and helping patients and families build resilience, nurture buffering caregiver/child relationships, and address disparities in social emotional determinants of health (food, housing, transportation, insurance, & other financial or social justice issues). Without going too far down the physiology rabbit hole, adverse childhood experiences (referred to as ACEs), especially when unbuffered and untreated, can lead to chronic activation of the stress response. And that constant “fight or flight,” dynamic can lead to future poor health outcomes such as asthma, obesity, cardiovascular disease, high blood pressure, cancer, depression, anxiety, substance use disorders, and others. As such, childhood adversity poses the single greatest threat to the future health and well-being of our children. To add intergenerational insult to injury, trauma can cause actual changes in the DNA (referred to as epigenetic changes) that can be transmitted to future generations; an ancestral curse in the truest sense. Thus, by forcing a mother to carry an unwanted pregnancy, with its implications for intergenerational poverty and widening disparities, especially within the BIPOC community, our country is actually legislating trauma and adversity for our patients and future generations. I certainly did not order the trauma special with a side of racism, so if you could take it off the menu, that’d be great!

As if all of that is not ominous enough, there are still a few other layers worth unpacking. Please excuse me while I take off my white coat and scrubs for a moment to lend a different, more personal, perspective. In other words, it’s about to get a little more real. When I was in my third trimester with my youngest child, I noticed a small growth at my jawline. Initially thinking it was probably a pimple, and given I was on bed rest, it was convenient to simply ignore it. However, it never really declared itself as a pimple, and it persisted and grew, likely thanks to all those fun pregnancy hormones. It turns out that what I had initially dismissed as a pimple, ended up being a rare tumor (now my second rare tumor…but who’s counting?). I was fortunate that it was at the end of my pregnancy, it was relatively slow growing, and it had not metastasized–a trifecta of oncologic good fortune. Under different circumstances, I could have had an extremely difficult decision to make. It is a decision that no mother should ever have to make, but unfortunately it is all too common amongst cancer survivors. Having begun my cancer journey at age eleven, I am grateful to have lived long enough to have three wonderful children. I cannot imagine if that cancer journey had ended during pregnancy, which is now a very real possibility for so many others.

However, cancer survivorship is not the only meandering journey I have traversed (aka stumbled through) in my life. When it comes to vocations, whether due to comfort or serendipity, sometimes you organically find yourself doing what you know. One reason I have gravitated toward work in adversity and trauma is because I, like many of you, have had a little too much experience doing the hard work of overcoming my own past traumas. While those experiences, and the difficult work of surviving and transcending them, are in the past, there’s nothing quite like having your reproductive rights stripped away to remind you of all you have endured.

By the time I reached double digits, I had been sexually abused, and by the time I reached 20 years of age, I had been raped twice. I was extremely fortunate that I did not end up pregnant, but I cannot begin to imagine how much more difficult my healing journey would have been had I been forced to carry a rapist’s baby. Honestly there are days that I still wonder how I survived abuse, rape, poverty, and cancer to be where I am at today. But then there are other days…days in which the residual sequelae of past trauma are just perceptible enough, at least to me, to remind me that survivorship is a lifelong journey. By the grace of God, the Universe, karma, ancestors, holy water, a lucky penny, and favorable winds, that journey has allowed me to live a life that ensures those past experiences were not in vain. But I can say with reasonable certainty that my ability to not only heal, but to utilize past adversity to ultimately help others, would have been severely impacted by forced pregnancy. So the work of advocacy and activism must be tireless to ensure that every woman has that same chance to not only survive but thrive, despite the intergenerational cycles of trauma and poverty that just became that much harder to break. To that end, it is time to unpack the luggage and get to work, because this jet lag ain’t got nothin’ on time travel back to 1973!

Photo Credit: https://www.zacharyleeportrait.com/

Curtain Call

Center offspring: Mom, sing “Easy Street”

Me (mouth full of salad): No

Center offspring: C’mon Mom

Me: Still no

Pause (to finish salad)

Me: Sings “Maybe”…including both verses. I think he was sorry he asked.

It was then that the irony hit me. My son is preparing for the role of Rooster, in an upcoming performance of Annie. That is the very musical that I used to envision myself starring in on Broadway. Yet it would ultimately be a moment, surrounded by other musicians and thespians, in which I would realize a larger dream.

Poised between the awkward middle school years and exciting, challenging, formative years of college, was this four year timespan that stood between me and “the rest of my life.” High School. It was to be the stepping stone, both necessary and sufficient to get me out of Kansas City. Why you ask? I wasn’t exactly being forced to milk cows or tend to the farm. So why the desire to leave? Well, much of my family was in California, where I had spent a portion of each summer since I was six and first began flying alone to stay with my grandparents. I loved it. It was warm, sunny, big, exciting, diverse. The weather was perfect. I loved the beach. Too young to be cognizant of the cost of living or the drudgery of commuting, I was sold, and there was no going back. I did not realize in high school how long it would actually take me to ultimately move to SoCal, nor how many moves lay in my future. All I knew was that I was Cali bound, one way or another.

Despite being a means to an end (which is how surely many viewed those four years), high school was a lot of fun. I sang in several choirs, played cello, did drama, debate and forensics, went to football games, homecomings, four proms, and hung out with friends as much as possible. Music was a huge part of my life. Perhaps it was fitting that it would be in the large orchestra/band room, in which I spent countless hours of high school, where I would ultimately make my single largest career decision. The irony lay in the fact that this decision would take me very far from music.

My junior year I was having a fair amount of pain in my right hip where I had had my initial cancer surgeries years earlier. To be fair I had never really been completely pain free, which was attributed to post-surgical neuropathy (changes in the nerves in the area of resection). It was not terrible, and it did not limit my activity, at least not any more than my own intrinsic laziness did. But the area near the scar was very sensitive to touch. In fact it was probably fifteen years before I was able to comfortably sleep on my right side, even briefly. I had also developed a keloid (thick, overgrown scar), which added to the discomfort. And from a cosmetic standpoint, it appeared as if I might have had a little run in with a machete. Thank God for the mid-nineties baggy jeans!

Due to my pre-existing condition, we had gone a time without health insurance but thankfully had recently obtained insurance again. My mother took me to a new surgeon at Children’s Mercy hospital, in downtown Kansas City. He said that although he hoped the pain was due to the keloid and neuroma formation (basically due to overgrowth of nerves after prior surgeries), he could not be sure that the pain was not due to recurrence of the sarcoma. So he recommended resection of the affected tissue with revision of the overlying scar.

We left that appointment, and my mom drove me back (as we Kansas Citians say) “north of the river” to school, as I had orchestra practice. I felt numb on the ride back and made an immediate b line for the orchestra room. As soon as I walked in, wearing my standard issue baggy jeans and navy high school logo jacket, I saw a couple of friends near the door. Having zero ability to conjure up any semblance of a poker face, my distress was transparent. I struggled to get the words out that I might have cancer again and would be having surgery soon. Tears filled my eyes, which I fought against to the best of my abilities. I paused while talking to my friends long enough to have a brief internal dialogue. I do not recall uttering the words aloud, but in that moment I promised myself and God that if I made it through this, I would become a doctor. Suddenly, and for the first time, my pain had meaning and purpose.

When I was younger and my mom would ask me what I wanted to be when I grew up, my answer was, at least for several years, consistently the same. I wanted to sing on Broadway. I used to stand in our kitchen, chin up, confidently belting out “the sun’ll come out tomorrow” as if I could feel the warm, unforgiving spotlights shining upon me. It seemed reasonable enough at the time. However, I can say with 100% certainty that, even before I developed vocal cord nodules in high school, and just a few years ago developed paresis (partial paralysis) of one of my vocal cords, this was an unreasonable life plan. But between the ages of say three and ten, this was the plan.

My mom was also consistent in her response to me. “You can do whatever you like, after medical school.” Was she serious? Absolutely not. We have no doctors in the family. She was not pushing a family business upon me. I do not think we even knew any doctors outside of our own, at least not in a social capacity. Did she actually intend for me to go to medical school to fulfill some parental desire to have a child become a doctor? Nope. But this was her way of informing me that I needed to go to college and get a decent paying job. Raising me without financial support and no college education, she always reminded me that I needed to be able to provide for myself, without the help of anyone, if at all possible. I honestly think she chose “medical school” as her specific response, because back then the stereotype that doctors make a lot of money was still at least somewhat grounded in reality. That being said, I do not think she ever really thought that I would choose medicine. Rather she just hoped I would choose something that would keep me from living on the streets or on her couch for the rest of my life.

A few weeks after I solidified my overall career trajectory, I underwent my third surgery on my hip. The subsequent week spent awaiting final pathology results, felt like one of the longest weeks of my life. Ultimately the news was good, and the tissue was benign. I was so relieved that I got a small dove tattoo on the opposite hip, as to me the dove signified freedom and peace from cancer. I had thought that would be my last surgery, and that I was now magically granted immunity from cancer. That notion is laughable now, but I cannot blame my sixteen-year-old self for being optimistic.

Now with that behind me, it was time to uphold my end of the bargain. This was really my first introduction to the concepts of duty, calling, and vocation, and I was fortunate they happened relatively early in my life. Without that gift, and I do truly believe this was a gift, I would have lacked the drive to forge through what was to come in the following years.

Happy National Physicians Day to everyone of you who continues to show up, with the early morning call time, under the unrelenting, hot flood lights (and PPE), front and center stage for your patients!

Photo Credit: https://www.zacharyleeportrait.com/

The Double-Edged Scalpel

Eternally in a hurry, I uttered my standard-issue, “No, I’m sure it’s all fine. It’s just the typical surveillance testing,” excused myself from the call, and walked quickly toward the hospital.

Five hours of testing later, and I would find myself deflated and wondering if that statement had jinxed things, as I dressed and gathered the paperwork to schedule my next, unexpected biopsy.

Sometimes we become so very used to a particular behavior that it becomes second nature. This is true of a wide variety of both adaptive and maladaptive behaviors…eating healthy, working out, drinking enough water, smoking, working too much, gossiping, shutting people out, making excuses for other people. Actions are so powerful that, when repeated over time, they simply become part of who we are. And after 30 years of cancer survivorship, eleven surgeries, more than eleven procedures, sixteen different types of biopsies, and twenty-one MRIs, I am no different in that regard. Long ago I became so accustomed to reassuring other people that I would fine, that it is literally reflexive. My arguably canned response is always “I know it will be OK.”

However, this is a little more complex than merely trying to placate others with a submissive, disingenuous statement. Though I must admit I am more prone to doing so when really busy and lacking the bandwidth to really comfort other people. But there is something more than just mere habit and convenience at play. For starters, I really do believe that God and the universe (and perhaps a pinch of karma) will ensure that things will work out fine, one way or another. While faith, like anything, may wax and wane at times, it is always there anchoring the journey.

Furthermore, as I have written before, I really do believe survivorship is a “good problem to have.” I try to not lose sight of those who are no longer among us, but who would have given anything to have this type of “problem.” I have also had decades of hearing the phrase “it is probably nothing…but because of your history, we should biopsy… just to be sure.” In fact, during the otherwise seemingly endless days awaiting pathology results, it is not unheard of for me to temporarily forget that I am waiting for that call. Additionally, I recognize how fortunate I am to have insurance and access to great care, and appreciate that I have been blessed with doctors who do their due diligence to ensure that I remain cancer-free. Thus while it may not be ideal to have yet another biopsy, the benefit of those needles and sterile surgical steel is that it is what ensures I remain here…for my kids…for my patients…for anyone else whose life I might have the opportunity to touch…and to continue to share my musings on surviving cancer (and so much more). So bring on the betadine and lidocaine. God-willing, it will all be OK.

*** Photo credit: @auskr (IG)

Holy Waterbed

Ninety-six years ago today, my grandmother was born. I had envisioned this day would involve a visit, a meal, and undoubtedly some dessert, as I have always, to the dismay of my inner, self-anointed nutritionist, shared her fondness for sweets. However, God and the universe had other plans, and she passed away on December 17th, a mere week before Christmas and twelve days shy of that birthday dessert.

As you might imagine given her age, she had amassed quite the impressive repertoire of life experiences. She had five children, four grand-children, and five great-grand-children. My grandmother attended college, spoke several languages, worked outside the home, traveled to more countries than I can count, cooked and baked prolifically, volunteered, attended mass every day, and drove until we could no longer, in good conscience, allow her to do so. She was truly the matriarch of our family, in every sense, and I spent a month each summer living with her, yielding some of my fondest childhood memories.

But there was another, unspoken yet more important, way in which she left an indelible impact on me. And it is only now, as I write these words, that I realize I never shared this with her. Yes…I know…there should have been plenty of time to share somewhere in those ninety-five plus years. Yet somehow, despite the fact that I wrote about it in my manuscript over a year ago, it just did not occur to me to tell her. As it is twelve days too late to remedy that, I will just have to hope that, as a woman of incredible strength, wisdom, and intuition, she simply knew. Ironically, her greatest impact on me likewise came without much overt verbalization. Having survived endometrial (uterine) cancer, a mere year prior to my own cancer diagnosis, my grandmother was the ultimate example of faith and strength.

Shortly after I was diagnosed at age eleven, I lay on my waterbed thinking about my reality. Yes, I had a waterbed. In 1989, it was still cool. And for any readers born in the late nineties or beyond, I will be sincerely flattered if google sees a significant uptick in the search term “waterbed,” as a result of this post! Alright, back to my contemplative waterbed scene. I lay there, staring up at the ceiling, and wondered whether or not I would be OK…whether or not I might die from this disease. Quite oddly, I never allowed that thought to really take hold in my mind. I remember telling myself that since my own grandmother had recently survived cancer, that surely I would do the same. That was it. It was decided.

It was not a formal prayer. I do not think I even asked God to heal me in that moment. Instead, it was as if I acknowledged that God and I had some type of arrangement or understanding that I would simply be ok. “Hey God. We’re good, right? Yes? Ok, good.” It felt as simple as that. I can only wish my current adult practices of prayer and faith were that simple. While I would not wish to relive that experience, I would happily take back some of that simple, blissful faith, without the side of the adolescent awkwardness, of course.

It is that simple example of spirituality for which I would thank my grandmother, if had a few more moments with her. And perhaps, given the symbolism of water throughout many different religions, it was appropriate that the impression of my grandmother’s faith was appreciated while lying on a waterbed. Happy birthday to my grandmother, and may she rest in eternal peace.

Welcome To The Group…

I would like to think it was fitting that I spent the last night of my dear friend’s (all-too-short) life raising money and awareness at a JDRF fundraiser, for it was diabetes that first bonded us. Unfortunately, we were bonded by another illness, cancer. And it was that illness which caused her to breathe her last breath a handful of hours after I returned from said fundraiser. It was shortly after I emerged groggily from my bed, having perhaps overestimated my ability to stay up so late (and having slightly underestimated the appropriate food to cocktail ratio the night prior), that I learned of her passing. She had been on hospice a few short weeks, and I admit that each day I wondered if this would be the day that the world would lose an amazing woman, mother, physician, and friend.

I admit that my friend and I had what you might call an unusual friendship. It was non-traditional in the sense that our entire friendship occurred through the mediums of text, phone calls, social media, and messenger. Yes, that means we have never met in person. We live in entirely different states, 1300 miles away from one another. Yet, we led eerily similar lives, which united us in ways that likely no two people would ever hope to be aligned.

I first “met” her the day after my youngest child was diagnosed with type 1 diabetes. He had just been admitted to the hospital, and I posted in a private physicians group about what it was like to watch my then 20-month-old son get his first insulin injection. She reached out to me, and the next thing I knew we were chatting away on the phone as she helped me navigate my first few days and weeks as a MOD (mother of a diabetic). Her own son had been diagnosed many months prior, and she already had some experience under her belt with navigating medical devices, carb counting, and the other details of the day-to-day care of a diabetic toddler. She understood what it felt like to be a mother, and a pediatrician, dealing with this disease, and her advice and support were invaluable to me. As I traversed the path from a pediatrician ordering all the shots, to a mom giving the shots, she was the one that shepherded me along the way.

Quite ironically, we had both been pediatric hospitalists (pediatricians who care for patients admitted to the hospital). I had transitioned to outpatient (working solely in the clinic) about 3 years prior to my son’s diagnosis. Shortly after we became friends, she considered and ultimately made a similar transition to outpatient medicine. Sadly, her tenure in the outpatient world would be way too short.

We both had three children, including an older daughter (hers a few years younger than my own) and two younger boys (hers are twins, mine are 5 years apart). Our type 1 diabetic boys even looked a bit like one another, and we kept saying how we needed to get the boys together. My heart aches when I consider that this particular play date never occurred.

As a person who values physical presence and touch, it might seem odd to feel so close to someone whom I have never hugged, other than in a virtual fashion. But sometimes empathy forges powerful connections that transcend physical distance. Something within me recognized and connected with something…many things… within her. And because of that recognition, my life was touched by having her in it. Likewise, because of that same connection, I now feel the void left behind by her absence.

Having been first diagnosed with cancer at an early age, I have had many occasions in which to experience survivor guilt. Most would say it is a good problem to have. And it is. I am grateful to be a survivor. But survivor guilt is a very real thing and in no way diminishes the gratitude of the survivor. And today that survivor guilt weighs more heavily than in the past. It is not merely because she and I both had a similar type of cancer (hers clearly worse than my own), though I have contemplated that particular unfairness on more days than I can count since she was diagnosed. It has less to do with our uncanny similarities, and much more to do with the fact that I know how incredibly heartbreaking it had to be to leave behind three young children, including one with a medical illness of his own. It is the pain of knowing that your babies need you, and that you will not be able to be there. While I am sure she took some solace in knowing that her children will be loved, nurtured, and cared for, that knowledge cannot erase the reality she faced in these past few weeks. While I am grateful that her suffering has ended, I wish God and the universe had granted her more time with her children (and, selfishly, with the rest of us as well).

However, despite all that cancer has robbed us of with her passing, she managed to touch so many people in such a short time. And those memories will hopefully ease the ache that we now feel without her presence, physical or virtual. One of my first memories of her was during our first conversation, as I stood in my son’s hospital room with tears in my eyes. At the time she jokingly welcomed me to the “group that no one wanted to be a part of.” It broke my heart a year later when I welcomed her to the other “group that no one wanted to be a part of” after she was diagnosed with cancer. My sincere hope is that her children will know there was one more “group” to which she belonged as well. A “group” that defined her more than her identity as a pediatrician, mother of a diabetic, or even a woman with cancer. It is the “group” of women who support, empower, and touch the lives of others.

Rest in peace, my beautiful friend. Your time here may be done, but your work continues.