#DoctorsSpeakUp

As both a mother and pediatrician, I am pretty comfortable in my bad cop persona. I have fully embraced the fact that I may never be the “fun” parent, nor will I likely be perceived as the “fun” doctor, as I spout such popular and well-received kernels of information, such as “no, it’s not healthy to play Fortnite 8 hours per day….yes, you should still be in a booster, I don’t care if your seven-year-old-friend rides in the front seat…no, cake is not a healthy breakfast… and no, neither candy corn, nor regular corn for that matter, count as a vegetable.” Thus it stands to reason that I should be unfazed by having to dispel various anti-vax-manufactured urban legends that have zero basis in either reality or evidence based medicine.

You know what though? It actually does bother me. I know that I “should” have no issue sharing unpopular, yet scientifically sound, vaccine information. However, I am going to admit that doing so can be exhausting. But why?

First off, it is winter. While to the blissfully unaware non-primary-care-physicians out there, this may mean merely colder weather, holidays, ski season, snow shoveling, and hot chocolate, this season has a different connotation for those on the medical front lines. Pediatricians are typically exhausted during the respiratory season, and this season has been rougher than usual due to the high volume of influenza in the community. Now enter stage right, COVID-19, and our bandwidth is dipping even further below where it was in January, when we found ourselves looking longingly toward April or May. But such is the seasonal nature of pediatrics and medicine in general. Most of us either knew what we signed up for in that regard, or quickly realized about two weeks into our first “respiratory season.” And certainly, this seasonality is something with which any parent of a small child is well- acquainted!

But one thing that no winter can fully prepare a doctor for is having to continually defend science to the general public. Now here is where I will admit that I am extremely lucky and have a really fantastic panel of patients, the majority of whom are fully vaccinated. So I am grateful that I spend very little time having protracted discussions about vaccines, beyond the standard anticipatory guidance. I rarely have to discuss Andrew Wakefield, the UK “physician” who lost his medical license for fabricating research positing a link between the MMR vaccine and autism. I also rarely have to address the lack of evidence that vaccines are unsafe or non-evidence-based alternative vaccination schedules. I only occasionally have to mention that there is far more formaldehyde in a single pear, than in the entire childhood vaccine series. At times I may need to mention that the entire childhood vaccine series contains a much smaller volume of antigens (portions of a virus or bacteria that stimulate the body to make protective antibodies) than that door handle you just touched. But even that conversation is not common in my daily practice. That said, for the occasional vaccine-hesitant or questioning parent, I can certainly engage in this discourse in the interest of health and well-being for my families and the community at large.

However, what I do not have much bandwidth left for is fighting the fear-mongering and ant-vax trolling practices that have become far too common and lead to a deleterious public health crisis. Some of us have almost become immune, ridiculous pun intended, to receiving yet another public health communicae regarding yet another case of measles or pertussis (whooping cough). I would be hard-pressed to think that any of us knew, when we took on $200K of medical school debt, that the medicine and science we learned would be publicly ridiculed on a nearly daily basis, and by people with zero training in science, research, medicine, or public health. In fact, in pediatrics, there is really little else that has such a robust body of evidence to support it. Yet here we are, arguing with conspiracy-theorists on social media. Who knew?

On March 5th, in the midst of an unrelenting flu season, and between answering questions about COVID-19, we will pause as a pediatric community to remind you that we will continue to fight the good fight. We are tired. But just as we used to rally in the 29th hour of a 30 hour shift in residency, we will dig deep. We will continue to support our patients, our families, and those in our practices and communities who are unable to receive vaccines or whose medical conditions put them at higher risk (such as cancer patients, transplant recipients, and those with weakened immune systems, including my youngest child). We will continue to engage in discourse and spread awareness to combat misinformation. We will persevere, to the best of our abilities, in trying to protect the community. All we ask in return is for you to vaccinate, wash your hands, and cover your cough. Also, we would like a nap…or two.

#DoctorsSpeakUp #Vaccinessavelives #Vaccinescauseadults #Vaccinate #WashYourHands #CoverYourCough #supportdoctors #weneedsleep

Disclaimer: Any offensive comments will be removed. Thank you for understanding.

State of Confusion

I have waited my entire life for one thing. And last night it finally happened! Leading up to last evening, I knew that there would be ugly crying. I am beyond grateful that they were tears of joy. Now you might be asking yourself, what could possibly be so important that I would hope and pray for one thing for several decades, without it coming to fruition? What one goal could be so meaningful as to inspire me to continue to remain optimistic year after year after year?

The Super Bowl of course! And last night, after decades of waiting, the Kansas City Chiefs won the Super Bowl! Just typing those words nearly invokes more ugly crying, but I will keep it in check long enough to address a very important issue…the existence of the apparently little known state of Missouri. Thanks to a rather infamous tweet immediately following last night’s game, I feel compelled to share a little excerpt from my manuscript that highlights the geographical conundrum that haunts me even now, twenty years after my departure from Kansas City.

I was born in Kansas City, Missouri, in a year that I do not wish to disclose as it forces me to remember my current age and somewhat recent(ish) milestone birthday. Now let us quickly dispense with the important burning questions. It is pronounced Missouri (miz-ur-ee) with an emphasis on the “ur” and with an “i” (long e sound). It is not “miz-er-uh.” You will note the lack of an “a” in its spelling. It is also not “misery” as the tired joke would suggest. But most importantly, Missouri and Kansas are not the same state. Yes there is also a Kansas City, Kansas. In fact, it shares a border with Kansas City, Missouri. But Missouri is still a separate state. Why, you ask, would I state something so seemingly obvious? Well that is because ninety-eight percent of the time, the immediate response to the sentence “I am originally from Kansas City, Missouri” is one of the following questions or declarative statements:

“Oh…what is it like growing up in Kansas?” I wouldn’t know. I just said I am from Missouri.
“Wow. Kansas. So it’s really flat there, right?” Yeah, I have also heard that little rumor about Kansas. But I cannot speak from experience, as I grew up in Missouri.
“Kansas? Well, I guess you’re not in Kansas anymore!” That is right. Because I wasn’t there to begin with…hence why I said I am from Kansas City, Missouri.

Now I could see how people might make assumptions had I merely stated “I am originally from Kansas City.” That would have left things open to interpretation and might invite the aforementioned questioning/commentary. However, knowing this reflexive dismissal of an entire midwestern state is so pervasive, I am always careful to include the “Missouri” after “Kansas City.” Even then, the questions are surprisingly the same. The even more surprising part is the varying degrees of incredulousness when confronted with the fact that there exists a Kansas City, within the state of Missouri. Some people seem convinced that I have fabricated its existence. When you find yourself defending your city’s existence to a flat-earther/alien conspiracy-theorist, you know that your city has an image problem. Then there are those that think perhaps I am really just from St. Louis, MO. Nope… that is yet another city within the state of Missouri, and it is on the other side of the state, no less.

Of course for people who grew up in either KCMO or KCK as the vernacular goes, there are stereotypes about people who live in each of those cities and a very subtle rivalry on behalf of a few. Though I suspect that any real rivalry is likely born from the frustration that comes with having to explain, ad nauseum, the difference between Missouri and Kansas. Alright, I suppose that should suffice for the geography portion of our discussion. However, geographical rivalries aside, it is important to point out that given the proximity of Kansas, and the fact that it does not have a separate NFL team, a great many people in Kansas are Chiefs fans.

And as long as we are challenging assumptions here, I should add that I did not grow up on a farm, nor did I have cows. We did have dogs…many dogs…including two white and black ones. But no cows. And no, I have never milked a cow or any other farm animal, despite what you might ascertain given my deep love of all things dairy. I have been to farms (mostly my grandfather’s chicken farm in Arkansas as a child), so maybe that gives me a tiny bit of street cred….or pasture cred, as it were. But I just needed to dispel the myth that all of us from the Midwest grew up on farms, know how to birth a calf, and/or actually know the difference between hay and straw. Yes, there is a difference. No, I do not know what it is.

But what I do know is that Kansas City, is a city full of people so passionate about their Chiefs that even if they, say, move to California for many years, they still dress themselves, three kids, and one dog in Chiefs gear on Sundays…they still pace back and forth during important games, keeping hope alive year after year…and they still ugly cry when their beloved Chiefs win the Super Bowl! Congratulations to the Kansas City Chiefs, Super Bowl winners at long last!

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.

A Good Problem To Have

Last night I was folding laundry, because I am glamorous like that, and was accompanied by my middle child. In the midst of this seemingly mundane task, and while he was actively resisting bedtime, we had an interesting conversation. It went a little something like this…

Me: Middle child, the nanny will be picking you up from school tomorrow.

Middle Child (whining): What?! Whyyyy?

It is worth noting that my newfound ability to pick my kids up from school on certain days is a relatively recent occurrence in our lives. And I frequently have meetings or the need to take his younger brother to appointments, so this really should not have been a big deal.

Me: I have an oncology appointment tomorrow.

Middle Child (still whining): OMG! You have an oncology appointment every day!

Me (shooting him a look, followed by momentary silence): …Are you kidding me?

Middle Child (yep, still whining): OK…not EVERY day…but all the time. When was the last time you went to the oncologist? Saturday?

Me: Umm, that was the optometrist..the eye doctor. You were there, remember (we have the same eye doctor)? I last saw oncology in October. That was two months ago!

Middle Child: Wait…what’s an oncologist again?

Me: The cancer doctor. And, Middle Child, this is a good problem to have.

Middle Child: What do you mean?

Me: There are people that would love to have this problem, because the alternative is not being here at all.

Middle Child (softens a little, no longer whining): But how can you say it’s a “good” problem?

Me: Middle Child, this is part of survivorship. There are two alternatives, death or survivorship, which means going to these types of appointments and having tests and procedures.

Middle Child (seeing an angle, cross-examining me): So… what you are saying is that having cancer is good?

Me (recognizing he kind of had me on a semantics technicality): Well actually… in this case, yes, because it led me to my career in medicine.

Middle Child: Well ok, I see your point.

Me: And yes, I see yours. Of course not having cancer is better than having cancer. But if you have to have cancer, surviving to be able to go to the oncologist is a good thing. There are so many cancer patients who would absolutely love to have this “problem.” In life, Middle Child, we all get our thing. It is what we do with it…how we turn it into something good to help others…that ultimately matters.

Middle Child: Ok, so what’s my thing?

Me: Slow your roll there, ten-year-old. Don’t borrow trouble! Also, did I mention it is bedtime?

As I sat in the waiting room today, which can feel a bit isolating, I reflected back on this conversation and could not help but smile. Normally as I sit in the waiting room I like to take stock of the various surgeries, biopsies, procedures, and imaging studies I have had over the past 30 years, only a handful of which were due to things other than cancer. At last count it was 11 surgeries, 16 different body sites biopsied, a minimum of 11 procedures, 20 MRIs, and at least 18 encounters for anesthesia. Yes, I’m that person that laughs aloud when a new patient form contains only three lines upon which you are supposed to “list your surgeries.” I do keep a reasonably updated running list in my phone, which serves a dual purpose. While it is a useful reference for occasions in which I need a memory jog, it is even more useful when I need a dose of perspective.

Survivorship is truly a gift, even when it comes with a hefty dose of surveillance and testing. Thirty years after this journey began, the resultant appointments, imaging, and procedures have seamlessly become part of my life. Though I admit it does not feel as “seamless” when I am trying to play schedule tetris to minimize time off work or when fighting with insurance for silly things such as sedation for a colonoscopy. I am not sure who among you are signing up for colonoscopies sans sedation, but my hat is off to you! Even the waiting, whether it be waiting for the radiologist to read my latest MRI, or waiting for pathology results after another round of biopsies…even the waiting has become second nature. So much so that I have been known to forget, for several days, that I am even awaiting results!

Nevertheless, I have accepted all of this as just part of the experience of survivorship, which, as it turns out, is a long, meandering excursion. But to be abundantly clear, the fact that my cancer journey is long is absolutely a blessing. And as I have grown fond of saying, as you and my kids can now attest, it is a very good problem to have!

Eight Weeks

Eight weeks. This picture was eight weeks in the making. I had a change in insurance this summer, which entailed navigating a new insurance company, with its different rules, exclusions, co-pays, providers, and coinsurance rates for medical devices/testing/etc. Most notably (and painfully), it meant different contracted pharmacies and Rx rules. We were incredibly fortunate to obtain a coveted endocrine appointment the same week our new insurance took effect. Yes, it involved a lot of calls and various people advocating on our behalf. And it involved an amazing, flexible, dedicated, hard-working endocrine team.

After dealing with five different pharmacies over the course of eight weeks, my son finally has all of his prescriptions. I am so grateful to the endocrine team who helped us navigate the prescription issues and search for solutions, especially when it seemed that everyone on the other end of the insurance phone calls gave conflicting answers. I lost count of the number of times they submitted and resubmitted prescriptions. Throughout this process they were accessible, helpful, and empathetic. Each time I felt as if I was bludgeoning my head against a wall, they went the extra step to help.

All things considered, even despite a nearly herculean effort, we are luckier than many. With the skyrocketing price of insulin, had we been without insurance, no amount of navigational help would have spared us the $1200 price tag for a one month supply of my son’s insulin. And that price is up 50% from when he was first diagnosed three short years ago.

In case that reality is not humbling enough, consider a few other factors.

1. I have private health insurance

2. English is my first language

3. I like to believe that I am reasonably well-educated

4. I have experience working with medically complex patients and, as such, some limited experience dealing with insurance companies, vendors, pharmacies, etc.

5. I have transportation, which increases my access to doctors and pharmacies (including being able to go back and forth to the pharmacy more times than I care to admit)

My point is not to brag about my relative good fortune of “only” struggling for eight weeks or “only” losing “x” number of hours on the phone. Insider secret: do not, under any circumstances, keep a running tally of the number of hours/days/weeks of productive life lost to phone calls to insurance, vendors, pharmacies, and the like. Unless, of course, you also want to find yourself navigating the mental health system as you slowly lose your grip on reality! To that end, I am very grateful for both external help from my son’s providers, access to care, divine providence, the universe, karma, and some luck.

But as a pediatrician, mother, and in solidarity with a larger community of caregivers, I have an obligation to state that the current global situation surrounding insulin pricing is floridly unethical. November 14th is World Diabetes Day, a date chosen because it is the birth date of Sir Frederick Banting, who won the 1923 Nobel Prize for being the first person to extract insulin from the pancreas. Banting’s discovery is what keeps the 1.25 million Americans with Type 1 Diabetes alive every single day. Banting’s discovery is what is keeping my son alive tonight, as he lays sleeping in his bed while I write this. And on the eve of World Diabetes Day and Banting’s birthday eve, I feel he would roll over in his grave if he knew that 1 in 4 patients with T1D admits to rationing insulin. I will even go on record and say that I have done it. Something has to change in this country for the more than 1 million patients living with T1D. And while I know that change is coming, I hope and pray it will be expedient, as many patients with T1D do not have eight weeks to wait. Happy World Diabetes Day! May both your insulin and your coffee be long-lasting!

An Ordinary Saturday

There was not supposed to be anything particularly auspicious about Saturday, November 5th, 2016. It was going to be an ordinary Saturday. In my Saturday uniform of yoga pants, hoodie, and flip flops, I willed it to be a normal Saturday, as I performed my typical weekend grocery run. Shortly after arriving home and feeding my son lunch, he walked over to his toy mat, threw himself down on the ground, and began to cry out in a way that sounded eerily sad and almost as if he were in pain.

Moments prior I was talking to a friend and colleague, a pediatric neurologist, about my son’s strangely disrupted sleep and my concern he might be diabetic (based almost solely on a two day history of increased urination). She must have somehow sensed I needed that extra push to get beyond the fear that I was merely being neurotic, and she said “you know you are going to have to bite the bullet and test him, or else you are going to drive yourself crazy.” I knew she was right, and upon hearing his cry, I packed him up into the car and drove him to urgent care.

Our pediatric urgent care was just closing, so I drove him to one closer to my own office that I knew had extended hours. When I arrived, I told the medical assistant (MA) that my son had polyuria (excessive urination) and polydipsia (excessive thirst), and I was here to test him for diabetes. So he cleaned him and placed a urine bag on him to test for glucose (sugar) and ketones (indicative of acid build up, a known complication of diabetes) in his urine. When the attending physician entered the room, I explained that my son had been having polyuria and polydipsia, words which she must have thought I googled, because she responded to say it “is probably just post-viral.” My gut reaction was that she had made that up and was using it to reassure me without unilaterally dismissing my concerns.

But I paused for a moment. As someone who spends much of her day telling parents that what their child has is likely viral, I considered how much I hate being doubted by parents. So, I gave her the benefit of the doubt, but asked if we could just test him anyway. Afterall, the urine bag was already on him. I also hate when parents try to insist on tests, as I do not like to order tests when they are not necessary, but I was not asking for anything expensive or invasive. She acquiesced and stepped out of the room.

I admit I felt a little silly, as if maybe I was overreacting. Mildly content with her explanation, likely only because that would have been a much better outcome, I settled, momentarily, into the notion that everything was fine. I was more than willing to believe that there are many medical entities about which I am completely unaware. So I decided to do the one thing that drives myself and most doctors crazy. I googled it. I found nothing. Not a scholarly article or even a “fluff” non-evidence-based article on the topic. Any slight validation I might have felt was massively overpowered by concern for the alternate explanation. This all transpired quickly, although it felt like hours, and at this point my son had peed into the urine bag, so I had the MA take it off in order to test the urine.

In reality the time spent awaiting the results was probably not more than twenty minutes, but it felt like a long time before the doctor returned to the room. At first she did not say a word. She merely let a small but audible sigh escape her lips. I immediately began crying. Before she could say anything beyond, “I was surprised,” I burst in with the words, “it’s OK. I already knew.” I am still not sure why I did that. I think it was a combination of having been in her place as a doctor and being charged with the task of delivering bad news, plus my own past experiences of receiving (or not receiving in a timely fashion) a difficult medical diagnosis. Then of course there is also the fear that once the words are uttered, it becomes real. But I distinctly remember sensing the awkwardness of her having to tell me that she had been a bit quick to attribute his symptoms to a virus, and that I wanted to make her feel more comfortable because, as physicians we all make hasty assumptions at times.

She asked how I knew, and I told her “I am a pediatrician.” Understandably, she then asked why I hadn’t led with that particular tidbit of information. It was a bit of a blur, but I think I said something less than insightful such as “I don’t know.” However, the truth is twofold. 1. When I teach residents, I often tell them that when a parent (especially when it is not their first child) tells you something is wrong, you owe it to them to listen. If a parent is significantly concerned, my senses go on high alert, because they are often right. Thankfully she did listen to me and agreed to test him. 2. I did not flaunt the pediatrician card, because I did not want to be a pediatrician that day. I wanted to be his mom. That was the role I needed to fill that day, in that moment. Perhaps that role allowed me those extra moments I needed to bask in denial. Maybe I just needed an objective party to be the one to confirm my fears

So it was there, on what was to be an ordinary Saturday, that the last moments of prior normalcy slipped from my grasp. Three years later I can only vaguely remember what “ordinary” even looked like, as it was eclipsed by our new normal. But three years later, one extraordinary four-and-a-half year old kid is celebrating his 3rd Diaversary! November is diabetes awareness month, a time to celebrate all the kids and adults who, like my son, are extraordinary heroes.

Caffeination for the Journey

By show of hands…have you ever had such a long week, that by Wednesday afternoon you were reasonably sure that no one would blame you for starting your weekend early and skipping out on the remainder of the week? Alas, I see that is all of you. OK, you can put your hands down now (and thank you to those of you wearing deodorant). Now as the majority of you are dragging yourself across the finish line this week (TGIF), I imagine that many of you did so with the fantasy of sleeping in this weekend. While I can only speak for myself, I know that I promised myself lots of “catch up” sleep as motivation for getting through this week. But then I remembered a slightly inconvenient fact…that I will be forgoing some of that coveted sleep to get up early and drag myself across a different type of finish line. That is because this Sunday morning is the annual JDRF OneWalk.

I cannot believe it has been almost 3 years since our lives were forever changed by type 1 diabetes (T1D). After we made it through the first year, I recall feeling almost empowered in a way…as if we could do anything as a family. And, even on the days where I require an extra cup or two of coffee, I still believe we can!

But what I did not know was that surviving that first year was only the beginning. Although we had tackled a year of medical firsts, there was much more to T1D than this pediatrician and single mom of three recognized. This last year, in particular, has begun to teach me how truly little I knew and appreciated about the social, emotional, economic, educational, sibling, family, and professional implications of T1D. As we humbly attempt to navigate the many facets of T1D, I feel a renewed sense of the need for education, awareness, and advocacy for all people and families living with type 1 diabetes.

Even now, more than two years into this journey, I still think back on those days in November 2016, when I was forced to reckon with both my intuition as a pediatrician and my inner mom voice, both of which whispered, “your child has diabetes.” That whisper grew to a louder whisper and then to a shout, over the course of two days. On November 5, 2016, shortly after my son turned 20 months, he was diagnosed with type 1 diabetes. That day marked the beginning of a new journey for him, and for our family as well. He is now 4 years old, and while this path has had many twists and turns this last year, we are grateful to have friends and loved ones by our side.

This Sunday, hundreds of patients with T1D, along with their loved ones and friends, will gather at the Rose Bowl in Pasadena, to walk a leg of this journey together. Each year all over the United States, there are similar JDRF OneWalk events. I hope that you might consider lacing up your shoes and walking alongside the T1D community as well. Like any journey with a T1D, I promise there will be snacks! And coffee…you can never have too much coffee.

For more information or to find an event near you: https://www2.jdrf.org/site/SPageServer?pagename=walk_homepage

The First Cut

Shortly after reaching the awkward, angsty age of eleven, I noticed a change in my body. No, not that kind of change. This was not the ominous harbinger of womanhood. Instead it was the signpost of something more sinister than even adolescence. For months I had what was thought to be a superficial wound in my right leg that simply would not heal. There had been no trauma, though a spider bite had been posited as a possible cause. Needless to say, I still hate spiders. Yet despite the lack of a probable mechanism, there remained this unexplained, non-healing ulcer. What was not readily apparent was that, beneath that lesion, lurked a softball-sized tumor.

On what was to be the auspicious occasion known as the first day of sixth grade, I awoke with fever and ear pain. My mother took me to my pediatrician to confirm my presumed ear infection. While I was there, he looked at the lesion and, seeing it still had not healed, sent us immediately to a dermatologist’s office upstairs in the same building. It is only now that I realize there is no way my pediatrician knew exactly what was going on, given how rare this tumor is in the pediatric population. But he definitely knew something was not right. I also now know how extremely unlikely it is to get a same day dermatology appointment. But due to a highly unlikely appointment scheduling miracle (or perhaps a phone call from a concerned pediatrician), there I was. The dermatologist took one look at it, and the next thing I knew, he was wielding a scalpel and cutting off a sample for biopsy. Sixteen biopsies and eleven surgeries later, I still remember crying when he cut into me. I suppose you always do remember your first time.

They told my mom they would call her in a week to discuss the results. Instead they called her four days later, on a Friday, to inform her I had a type of cancer known as dermatofibrosarcoma, for which I needed surgery. Thirty years later, I still remember many details of that day, Friday, September 15th, 1989. I recall the drive to the hospital, being angry that mom dared drink a diet Dr. Pepper in front of me while I was NPO (nil per os, which is Latin for the torture of fasting prior to anesthesia), what I was wearing (a black cotton jumper with pale peach shirt–yes I am judging my own fashion choices as I write this), and my fear of pain and needles, which is laughable now. As the nurse and anesthesiologist wheeled me back to the operating room, I remember my grandmother crying. The distinctive, noxious smell of inhaled anesthetic (gas) is a scent that I could place anywhere. As I counted backwards from 100, I thought about how the gas smelled like white out, a smell that transports me back to that cold OR. Although I had no way of predicting the number of subsequent encounters I would have in the operating room in the years following my cancer diagnosis, it almost feels apropos that my diagnosis and first surgery came in September, which is Childhood Cancer Awareness Month. As September draws to a close, I want to recognize and honor all the survivors of childhood cancer, those who are still fighting, and those who are no longer with us physically but who have touched our lives in immeasurable ways.

I Promised To Never Forget

Between the start of the school year, starting a new professional journey, and a few other transitions for our family, the last few weeks have been a bit of a blur. Add in the fact that I worked late the last two nights and was up early again this morning, and perhaps it is no surprise that I did not have pause to consider today’s date until mid-morning. Yes, this means I somehow managed to avoid all social media, news, and radio until another person’s comments lured me promptly out from the rock under which I had apparently been hiding thus far today. I am embarrassed to admit this, not because it speaks to the fact that I was clearly out of touch this morning. Rather I feel ashamed that I failed to be mindful of such a tragic day in our history and honor both the fallen and our first responders. I, like many of us, promised I would never forget. I almost did. Almost. While it may not quite make amends for such a slight, I wanted to share my experience of 9/11, as I do truly believe that it is the discourse and memories that unite us as a nation.

After a few months off between my first and second years of medical school, I returned to Washington, DC, to resume my coursework at Georgetown. I had not been back very long, when I awoke one morning feeling a bit behind and with a plan to skip a couple of lectures and use the time to catch up on reading and studying. But first I needed to run a few errands. I quickly donned a black cotton dress and platform flip flops and hopped in my car. Leaving the quiet gated community, in which I was renting a room, I started driving toward the Key Bridge to cross from Georgetown to Arlington, Virginia. My plan was to go to Target, which happened to be close to the Pentagon (2.9 miles to be specific). But just before I got to the bridge, I remembered I needed to pick up a prescription from CVS, so I made a last minute split decision and turned right to drive toward the pharmacy. I was in and out of CVS in less than fifteen minutes and began to head back toward the bridge. As I was turning on my radio in my Saturn, I looked out my windshield and saw black billowing smoke beginning to rise in the air off to my right. It appeared to be in the exact direction that I should have been driving, had I not made the last minute decision to run to the pharmacy. At that moment, I noticed the radio was not playing the expected music but rather was engaged in reporting some very serious-sounding story. As I was just tuning in, it took me a few minutes to piece together what they were saying, that a plane had struck the twin towers in New York. At that time there was no mention of what could be causing the smoke I saw coming from across the Potomac. My mind barely had time to process this information, as I made another decision to go straight home and find out what was going on. I was home within minutes and ran straight to my room and turned on the news. I watched in absolute horror as the footage was being replayed of the second plane striking the South Tower. A few minutes later, news of a plane striking the Pentagon broke through, followed shortly by the information that there was a 4th plane headed for D.C.

Assuming my classmates would be studiously sitting in lecture (where arguably I should have been as well), and would have no idea what was going on, I walked (ran) down to campus to join my class in the lecture hall. But as I hurriedly crossed the street to enter the building, I was stopped by an armed guard who said that the area was being evacuated and, unless I was showing up for a shift in the hospital, I needed to turn back around and head off campus. At that moment, I saw classmates walking out of the building and quickly dispersing in various directions. A few that headed in my direction shared the same look of bewilderment and panic that I am sure I had, and I talked to a few to discuss the news and their plans of where to go. A few were headed to their homes to await further news, and one or two others were going to attempt to head to Maryland where they had family or a spouse.

One classmate told me that the Key Bridge was either closed or impossible to traverse at that time, which immediately made me feel a combination of relief and fear. I was relieved that I had made that split decision earlier to not head to Arlington, as I would now be stuck in Virginia. But I was simultaneously fearful, as my roommate had headed out before me in the morning to the gym, which was across the bridge. It was at this time that I realized our cell phones were of little use. I was unable to reach her for some time, but later learned she was OK but stuck trying to get out of Arlington. As I had nowhere else to go, I walked back to the house to wait…wait for answers as to who would do something so awful, not to mention why…wait to be able to reach loved ones and tell them I was OK…wait to be reunited with my roommate…wait to hear where that 4th plane was headed, as there was much speculation that it was headed for our area. Eventually my roommate made it home safely, we learned the fourth plane had been heroically grounded, and I was finally able to reach family and friends to tell them I was safe.

The skies around us became eerily silent as air traffic came to a screeching halt. Our country became silent as we collectively processed and tried to grasp any semblance of understanding regarding the events. It felt like there was an enormous pause, as a nation, before we could even begin to count our fallen, grieve, and try to pick up the pieces, let alone even contemplate starting to heal. Watching the news, talking with friends about what we knew, who we knew that had lost someone, all the theories, hows, and whys, took on an almost obsessive character. Many friends and fellow medical students, at least in the two to four weeks that followed, appeared reduced to hollow versions of who they used to be, and understandably so. I think we all just felt different, changed by our shared trauma, though most of us were not able to articulate the shift that had occurred within us.

For all the loved ones who remained, forced to pick up the pieces and move forward, lives forever changed, may the memories bring you some measure of peace. And for the first responders, may we never stop showing our gratitude for all you have done.