There was a day when I thought I might have only 45 minutes to live. That day was April 27, 2012, exactly ten years ago today.
Ten years. When I was 8 years old, the 10 years between me and my 18th birthday seemed like an eternity. Now that I am 36, ten years feels significant but not forever. I suspect that if I make it to 46, these next ten years will seem even shorter than any decade I have experienced yet.
Ten years ago today was the closest brush with death that I have had. Unwillingly, I was forced to face my own mortality. The presumed invincibility and long term outlook of my 20’s ended abruptly that day.
When I was rushed into emergency surgery, I didn’t know what was wrong with me and neither did the doctors. We only knew that my intestines were obstructed by an unknown mass and if I were to live, it had to come out immediately. I was told I would likely wake up with a colostomy bag and asked to sign a form acknowledging death as a risk of the surgery. I was all alone for most of the 45 minutes I had.
When I woke up from surgery, I was colostomy bag free but faced with the prospect of a long recovery and the lingering mystery of the origin of the mass. Later that week I learned that it was a malignant neoplasm–cancer–the exact type still unknown. I was told it was either a sarcoma or a melanoma, not a carcinoma which is by far the most common type (breast cancer, colon cancer, prostate cancer, lung cancer).
My tumor was unusual and had to be sent to UCLA’s tumor board for analysis. I had my very first PET scan that week. Before receiving the results I worried that my future was now limited. The questions were innumerable.
Would I survive the summer? Christmas felt like a long shot. What would life look like with a massive vertical wound that would someday become a scar on my belly? Would anyone ever want to date me again? Would employers want to take a chance on a young girl who might die from cancer soon? If my time was limited, what should I focus on?
My long term goals no longer mattered like they once did. How could I live a fulfilling life, not knowing if these weeks were the end of my life? I had always been a long term planner, taking actions with future me in mind, nevermind the present. Robbed of the certainty of my future, I was forced to make a monumental mindset shift.
After nearly a week of uncertainty and wearing a wound vacuum, I visited my assigned oncologist. He told me that the PET scan revealed no evidence of disease. This is the best news possible for cancer survivors, but it was hard for me to understand just how wonderful that was. I was, after all, newly inducted into the world of cancer and I still didn’t even know what kind I had had.
Eventually they determined it was clear cell sarcoma of the gastrointestinal tract. A research study conducted between 2004-2017 revealed only 53 cases of this cancer worldwide.
The statistics for clear cell sarcoma are grim. If you google it like I did, you will be faced with the phrase ‘poor prognosis.’ Five year survival is 56%; ten year is 33% and twenty year is 10%.
But now that I am in the one-third who makes it to this 10 year milestone my hope for old age is reignited. Yes, I need to remain vigilant. Especially because having radioactive glucose injected into my veins (procedure for PET scans) multiple times at a young age increases the odds for developing other cancers. But, now that I’m in the 10 year club there should only be a 23% chance that I perish before age 46. Much better than the 90% chance I once faced.
So today I celebrate this incredible milestone by indulging in the here and now. I took the day off work and filled it with activities that bring me immediate joy, writing is one of them.
Ten years has taught me so much and I have been incredibly fortunate, perhaps even blessed, to have such a magnificent quality of life. That is not always the case with cancer. Even those who survive 5 years are often undergoing treatments and battling relapses during that time.
I’ll be making a series of videos over the next month highlighting 10 perspective shifts that I have made since surviving cancer. I love to write about developing a resilient mindset, and those strategies are directly influenced by what I’ve learned as a cancer survivor. So, if you’d like, follow along on my YouTube channel.
I’ll also be raising money for the Sarcoma Foundation of America through the next month in hopes that my story can inspire newly diagnosed sarcoma patients and we can raise money for more research on these rare cancers that account for less than 1% of all cancers and mainly impact young adults. Check out my page on Raise Your Way to donate directly to my 10 year cancer free fund. My goal is to get 100 people to donate just $10. Of course, if you can donate more you are welcome to but $10 is all I ask. Thank you, everyone. Here’s to 10 more years!
This week I celebrated eight years since I survived cancer. I’d like to say eight years ‘cancer free’ but that term always strikes me as a misnomer because I continue to think about and alter the way I live because of my experience with the disease. It’s crazy to think that it’s been eight years now since I was recovering from surgery at Ronald Reagan UCLA Hospital and bracing for a huge fight against the disease, not knowing how much time I might have left to live out my dreams and accomplish my goals. I am so thankful for the time I’ve had, and I’ve written recently about my goals and reflections entering a new decade as a cancer survivor. So today I wanted to share my most recent cancer related experience because I think there are others like me out there in limbo, cautiously optimistic but still navigating concerns even eight years later.
I recently broke up with my oncologist. It wasn’t because I didn’t like him anymore or I found someone better. It was mostly an economical choice based on a rough cost benefit analysis. For years I was a huge proponent of the PPO insurance plan and the flexibility and choice inherent in it. It was ingrained in me from a young age (probably due to some bad experiences my parents had) that HMO’s are evil corporations that put money before the patient’s needs and if you are on an HMO and something bad happens you will be trapped and severely limited in the options you have available to get life saving care. So of course I was extremely thankful that I was on a PPO in 2012 when I was rushed to the hospital for emergency, life-saving surgery to remove my tumor. My hospital bill was over $100,000 and it would have absolutely bankrupted my struggling entry level finances at the time. Fortunately, I had been paying monthly premiums for a good, employer sponsored PPO. After meeting a $2500 maximum out of pocket I did not owe anymore. I was also able to choose to go to UCLA, a leading oncology hospital and see a sarcoma specialist, Dr. Arun Singh.
From Day One we had a great relationship and rapport. He was funny, charming, and incredibly smart. I was finishing my graduate work at the time and well familiar with his world of publications and research conferences. I was somewhat fascinated that I was the subject of his research. My case was ultra rare (only 53 cases like mine have been documented worldwide from 2003-2017), and I got the feeling that it was very interesting to him. When I was assigned to him, I really believed our relationship would probably be lifelong, at least for me. My particular strain of cancer has a late recurrence interval and there was never an ‘end date’ discussed for when I should stop getting follow up scans.
Year after year, I would see him for appointments and always felt like I must have been one of his favorite patients. After he delivered the good news from my most recent imaging scans (“A+ good job” he would say) we would spend the majority of the appointment catching up like old friends and engaging in small talk. I remember him telling me about his cooking endeavors, his 2016 Presidential candidate Bobby Jindal Halloween costume, and the birth of his first child. I told him about my blossoming career, my White House visit, and why he shouldn’t run to a doorway during an earthquake. I remember it felt like a huge milestone when I brought my boyfriend (now husband) to an appointment with me to meet him, almost as if I needed his approval. I think he enjoyed our visits as they must have been breaks of positivity in his challenging days of delivering bad news and advising people in difficult situations. I think he took pride in knowing that he helped save a young life that was now flourishing and making moves in the world.
But when JB and I got married in 2018 and decided to start trying for a baby everything changed for me. I was no longer just a single person making her own choice about healthcare. My decisions now had an impact on our family. We both wanted to be on the same health plan, it was certainly most cost effective and nice to be treated like a family unit. JB had always been on Kaiser, an HMO, and had fine experiences. He has also never had any major health problems. I had a couple friends who had recently received prenatal care and delivered through Kaiser and raved about having excellent affordable care throughout the process. While I was still leery about HMO’s for the difficult cases, like my cancer, I believed that they probably do a pretty good job providing prenatal care. This was something that happened every single day and lots of patients needed help with. It was exactly what an HMO should be good for.
We made the switch to Kaiser in 2019 and I received fantastic prenatal care with access to classes and online materials throughout my pregnancy. While my birth story was not the easiest, I always felt that I was in good hands at Kaiser and was not afraid when after 3+ hours of pushing my labor ended in a C section. The care that they’ve provided Scarlett has been high quality and consistent. I really believe their breastfeeding clinic is exceptional too. I am not sure if our breastfeeding relationship would have survived the incredibly difficult early days without their follow up appointments, tailored feeding plans, and assistance with getting a free hospital grade pump. The best part about this is that it was all 100% covered. Yes, you read that right we did not pay a dime for prenatal care, an induction, a C-section, a 5 day hospital stay or any breastfeeding consultation appointments. And that includes the premium–our Kaiser HMO plan for a family of 3 costs us $0 per month (because JB’s union is great at negotiating!)
So when it came time to decide on 2020 care plans, I was torn. I was going to need another imaging scan to make sure that the cancer hadn’t returned, in fact I was overdue for one. I had sent an email to Dr. Singh in August, when it was time for my annual scan, to share the news of Scarlett’s arrival and to tell him I’d like to delay til the Spring if possible so I could wait until the new year to return to my PPO plan. He said that he was fine with that–no urgent need to get the scan in August.
But when we looked at the costs, I realized I was in a bit of a predicament. The out of pocket costs on my employer’s health premiums were going up (of course) and would run me nearly $300 a month for the premium PPO plan I had previously been on. And that is just for me, not my family. In addition to this monthly premium, I would also have to meet a $500 deductible before then covering 10% of the bill. From previous experience, I knew the annual MRI would run me about $800-900. Then there were sometimes bills for the lab work and of course the $50 co-pay to see Dr. Singh. So it would end up costing me about $5,000 to get the MRI and the good news (fingers crossed) delivered to me by my specialist.
Now that I’m a mom and a wife, the choice isn’t so easy anymore. It’s also been 8 years and as thankful as I am that I’ve never had a recurrence, I have to start to think about whether it is worth it financially to be on an expensive plan for the chance that I need highly specialized care. I chose to give Kaiser’s oncology department a shot. The oncologist I’ve been assigned to there told me that it was very unlikely for cancer to recur after 5 years and with the rarity of my disease Dr. Singh didn’t really know either how long I should continue the follow ups. There was not really a standard for something as rare as this and I guess he had written about this uncertainty in some of the notes that my new Doctor read on my case. Through discussion we came to the conclusion that we should plan to continue annual MRI scans to the 10-year mark and then revisit. I had a normal scan in 2020 and was given the all clear for another year.
It’s Spring now and I’ve had a normal scan, so I decided to write to Dr. Singh to update him and let him know where I stand with my insurance. I guess in a sense it was a break up letter because I was telling him that I had a new doctor and had gotten scans behind his back so to speak. It weighed on me heavily for weeks before I did it, I kept finding excuses to avoid doing it. I crafted the note to be as respectful, personal, and thankful as I could as I tried to explain my decision. I must’ve re-read the email 20 times before sending it. Once I sent it I was nervous to check my email for responses. My heart stopped every time I saw my gmail tab with a (1) on my browser that day. There are very few people who have that effect on me mentally, but he is one of them–I guess as an authority figure of sorts in my life. But he never wrote back.
I don’t know what he thinks, maybe he is sad, maybe he is disappointed. Perhaps frustrated that the healthcare system in the US is what drove me to leave him. Maybe he thinks that the out of pocket expenses I’m trying to avoid are measly in comparison to what most of his patients spend on treatment, which I know is true. At least I have a good job with employer sponsored health insurance, I am well aware that many don’t and face much higher premiums and out of pocket costs. While I’m thankful for my health and my employment knowing that I’ve had it so much easier than so many other cancer survivors, I still have to prioritize my family and our middle class plight of trying to buy a home in Southern California and save for our daughter’s future. It’s a difficult predicament to be in, but I take comfort in knowing that Kaiser would refer me out of network to a specialist if anything were to change with my condition, and I could lobby to see him. I also take comfort in knowing that with all the money I save not paying the PPO premiums I could also afford to see Dr. Singh out of pocket if I really needed to.
The decision wasn’t easy and I am still struggling with it and the hurt of ending the relationship on a financially driven, sour note. Perhaps this story is too personal to really be of relevance to many people. Or perhaps it is more relevant than ever in the age of COVID-19 when health is constantly being pitted against economics in a nation with a privatized healthcare system. Either way I wanted to share it, because even after eight years without a cancer cell in my body I continue to carry its phantom weight and sometimes writing allows me to release an ounce or two. And if there are other survivors out there struggling with a similar decision, perhaps my story can help or at the very least provide a sense of solidarity.
Last summer I gave birth to a baby girl who will turn 8 months old during the pandemic. Living through this crisis as a parent is completely different than it would have been if I was still looking forward to motherhood. There are so many layers of responsibilities and emotions for parents as we cope with this new reality of the world. My child is definitely too young to understand what is going on and certainly won’t remember this, but it’s an even more complex situation for parents with older kids who don’t understand why they aren’t in school and why they can’t go to their friends birthday parties anymore. I’ve been reflecting on how the crisis impacts my new identity as a parent.
The primary way that I am approaching this situation differently is that I am now a protector. I work in the field of emergency management and my job for the last 3 years has been focused on response, so in this situation I theoretically should be going out into the world to help manage this crisis in any way I can. But in my new role as a mom I am the protector of an infant who is just learning to wobble on her own two feet. It has spurred me to seek opportunities to support my agency’s mission remotely so that I can keep my daughter home from daycare and self isolate the both of us as much as possible.
There is nothing more important to me than her safety so I will have to make difficult choices while navigating the career path that I loved so much before. While I retain the ambition and drive for my career and remain passionate about crisis management and disaster relief, I am finding myself needing to rethink my approach. How can I best apply myself professionally while prioritizing my role as a protector for Scarlett, especially in the era of the pandemic? I am challenging myself to find new, creative ways to remain productive and to thrive professionally while working from home and entertaining my daughter. I think many parents may be grappling with similar choices and exploring new productivity strategies, especially those who have careers that could put them in harm’s way during the outbreak.
The Curator of their Universe
Especially now that so many of us are home with kids who would normally be in school, we are more responsible for crafting our children’s worlds than we ever were before. Shaping each day is now solely within our control, we can’t rely on teachers and strict school schedules to guide their days. It is up to parents to design the pace of day and find a good balance of playtime and learning, breaks for snacks and exercise, and the ratio of time spent indoors vs outdoors. Scarlett and I have settled into a good schedule–I have set up a couple different play areas that I rotate her between while I fire off emails and enter resource requests in the system. For conference calls, there are a few safe places I can use to keep her entertained and contained while mama moves to the office for the call. Her morning and afternoon naps provide an opportunity for me to catch up on the bigger projects that require utilization of my double screen set up in the office.
While the work that I’m engaged in deals directly with the impacts of the pandemic and how we move resources to assist local government with their response, I know that I need to also be mindful of the atmosphere in the household. The tone of my voice when I’m speaking, my body language as I react to new urgent tasks, will all have an effect on my daughter. While Scarlett is too young to remember this time, it’s especially important for parents of older children to be purposeful in the atmosphere that they create. The situation is grim in many regards but within your own household you are the curator of their universe. You can shape this memory into a deeply meaningful, positive era when the family got to spend more time together and take a break from the hurried American lifestyle. They can learn to cook dinners or experiment with baking, perhaps learn to garden, change the oil in the car, learn to scrapbook or engage in other crafts that they wouldn’t normally have time to do in school. This is a great time to learn extracurricular skills and if we create a world where the quarantine is actually a fun vacation rather than a prison sentence our children may look back on this time fondly.
While many of us are taking on the role of teacher whether or not we like it, I think we should also try to take on the role of the student. Our kids for the most part are blissfully unaware of the greater world and the threat of the pandemic. They aren’t worrying about transmission and mortality rates or the status of the economy. They are waking up each day ready to experience life, explore new things, grow, and learn. Their outlooks are inherently positive because they have so much life to live and so much to look forward to. My daughter has been babbling excitedly at us and is so thrilled to be able to stand now. She loves to practice curling her toes under and elevating herself. The house is a brand new place to explore for her as she can now see and touch things that she never could before when she was limited to army crawling. She starts each day with a smile. Teenagers may not have the blissful naivety of Scarlett, but are probably at least thankful for some extra time to sleep in and access to household snacks all day.
When I feel myself getting overwhelmed with the devastation and isolation of COVID-19, I try to focus on Scarlett’s face, her attitude and the smile she gives me when I make a silly face and just absorb the small moments of mother-daughter bonding. We may be newly minted teachers but our kids actually have a lot they can teach us about focusing on simple moments of bliss throughout the day and the uncomplicated joy of smiling and laughing in the sun. Give yourself this opportunity to recapture the innocence of childhood and allow them to share with you their hope for the future.
As the world grapples with the first truly devastating pandemic of the globalization age, I’d like to offer my reflections on this catastrophe through my perspective as a cancer survivor. There are attributes of the situation that I find are akin to coping with cancer, which may conjure many familiar emotions for cancer survivors. There are strengths and lessons that we as survivors have gleaned from our experiences that I hope the world can impart from this scary situation.
The Invisibility of Disease
People who have never had a close friend or family member with a disease tend to have a perception that when someone is sick, they look sick. There’s an assumption out there that the person will be pale, thin, or exhibit other obvious physical symptoms that something is not right. As many of those who have been diagnosed with cancer are all too aware, you often feel just fine. Or perhaps you’ve got a bit of discomfort, a strange ache or recurring pain but it definitely does not seem insidious enough to be life threatening. What’s striking for me with the COVID-19 outbreak is the similarity in that many only ever exhibit mild symptoms and nearly all cases are asymptomatic during the incubation period which can be 2-5 days from what I’ve heard.
This means that at least in the beginning COVID-19 is invisible. You can’t look at yourself in the mirror and see it. When I had cancer, I had no changes in my physical appearance except for some welcomed weight loss. I was a 26-year-old woman, in pretty good shape and definitely able bodied. No one would have ever guessed, myself included, that I had cancer. You can’t tell if someone has COVID-19 by looking at them, and you can’t tell if they just have a cough because so many common colds are going around too.
We keep hearing the virus can survive on surfaces for days, and we have to assume that it could literally be anywhere in our communities. It is invisible–microscopic just like the cancer cells that can lurk deep within. One of the most difficult things to come to grips with about this crisis is that we cannot see it as it spreads, our enemy’s presence is unknown and that raises the stakes and heightens our anxiety.
The Anxiety of Uncertainty
One of the words most associated with this crisis is ‘uncertainty.’ We don’t know how long it will last. We don’t know when cases will peak. We don’t know if our hospitals will be able to keep pace with the need for ventilators. We don’t know if someone in our inner circle will be infected, or if they will die. These are familiar emotions for cancer survivors. We never know how successful our treatments will be. We never know if a follow up scan will reveal good news or bad news because we feel ok and the disease is invisible.
For me personally, I recently went through a period of intense anxiety and uncertainty for my future. A routine scan revealed something the doctors recommended for further investigation. The period between learning this and receiving the results of the follow up scan was nearly a month long and I went through a roller coaster of emotions. I oscillated between visions of my future self–one with a healthy, normal, ‘unremarkable’ life after receiving good news and another of myself once again gearing up for a big battle and calling upon my inner strength to survive another assault from within. Thankfully, the results of the second scan were normal and I was allowed to refocus on my vision for a healthy future, a longer life, and being able to watch my daughter grow up. I received the results the week before the Governor issued the Stay At Home order, so as I released one anxiety the other quickly took its place.
The uncertainty has settled over us like a dark cloud and we don’t know when it will dissipate. We have been stripped of our ability to plan our futures, not knowing if weddings or big trips we looked forward to will happen. We don’t know the extent that this disease will impact us personally. Much like cancer survivors, the world must now learn to accept the uncertainty and wait.
The Susceptibility of Being the Other
Many cancer survivors who are currently undergoing treatment or have recently finished are considered to be more susceptible to COVID-19 as their immune systems are still fighting and healing. This amplifies the anxiety that everyone feels. We must lean on others to make the right choices of staying in to flatten the curve, and we must deal emotionally with being classified yet again as ‘other.’ After my diagnosis, I longed for the luxury and freedom of being normal, of being average, of just being someone with no ‘underlying issues,’ or ‘pre-existing conditions.’ It can be very isolating to feel ostracized in this way.
Everyone has been hoping the teenager that passed away from COVID-19 earlier this week had an ‘underlying condition’ to make him/her more susceptible because no one wants to think that this disease can kill those who are normal, healthy and young. But how does that make people already in those classifications feel? For me, it exacerbates an already existent anxiety and almost shame for having been sickly. It reignites a deep traumatic fear I have because my immune system failed me once before by letting a tumor develop, that it could fail me again in a situation like this. Now this classification as one of those ‘at risk’ has been extended to those with heart disease, diabetes, compromised immune systems, and even to every person over the age of 65. Today, more people than ever have the unease of being othered and separated from the healthy herd of humans into the realm of uncertain vulnerability to an invisible enemy.
Cancer survivors have a lot to offer the world right now when it comes to guiding our fellow humans through coping with a global pandemic. One of the key things that we can offer is inspiration for endurance. We are used to enduring long, uncertain waits between procedures or follow up scans. We are used to enduring the mental distress of entrapping medical statistics and difficult prognoses. We have been through weeks, months, some of us many years of grappling mentally with a barrage of testing and the possibility of shortened futures. Not knowing whether we will hit certain milestones we had planned for that year and our lives. I think right now we can offer our perspectives to our communities–we will get through this, we have to take whatever protective actions we can, maintain a positive attitude and know that if we preserve through these unpleasant times wrought with negativity and challenges that we will get to a better place. Patience is the key to endurance in a crisis like this when so much is out of our hands and we have to wait for answers. Think about the things that helped you endure your journey with disease and share your strategies with those who might not have ever had to deal with something as scary as this.
Celebrating the Small
One strategy for me when I was diagnosed with cancer was to stop focusing so much on the future. I had spent much of my life looking forward to life’s biggest milestones and trying to accelerate on the fast track for a successful professional career. When cancer blindsided me I had to totally regain my balance and find a way to re-frame my perception of my future, and–in a way–my perception of time in general. I feel like we are in a similar situation now, with so much being canceled we suddenly have these giant, blank calendars and it’s unknown if the things we have planned for the summer will come to pass.
While most of this situation is out of our control, we can regain our sense of self by setting new metrics for success and celebrating the small, everyday moments in our life that we would have otherwise overlooked. For me, my daily walks are one of the metrics I use to measure my success toward my health goals. Writing is another action I can take that elevates my mood and sense of accomplishment toward professional goals. Engaging in family dinners at the table, rather than being scattered all around is another way you can glean a personal success and find joy. Even finding a quiet 30 minutes to be able to do yoga, just read or relax in the sun can really boost your spirits during this dark time. Eating healthy is a challenge for all of us right now, so I feel like I’m achieving in that arena when I can get at least a couple fresh fruits or veggies into my diet. We may feel powerless but there are all kinds of little things we can do to fight back and try to stay healthy both in mind and spirit.
Sharing our Emotions
Right now, you can be sure that everyone you know is going through an array of emotions associated with the pandemic crisis. Anxiety, fear, relief at being able to stay home, and hope that we will come through this stronger than ever. Now is a really great opportunity to connect with friends, acquaintances, and previous professional connections you may not have heard from in a while. Check in on each other, be vocal about how you are feeling. We need to lean on each other now and try to nurture our connections to get through this. When I was going through cancer, I was overwhelmed with the love that I felt from all corners of my life–both past and present. People I hadn’t spoken to in years reached out to make sure that I was doing ok and offer supportive words and virtual hugs. It really helped me a lot to know that so many people were in my corner and praying for me during a dark time. We can all do this for each other now, particularly those who might be more at risk for this or who are struggling without much support either from being laid off or being overwhelmed at home with both work and childcare. Community is a powerful tool and we can all do our part to leverage it now. Speak up, share your story, share how you are feeling. You can create a wave of positivity that will break down barriers in this quarantined world.
How are you reflecting on the current situation in comparison to past adversity you have survived? What strategies can you borrow from those times to get through this?
The 2010s were an incredible decade for me, full of the highest highs and lowest lows that I have yet experienced. Toward the beginning of the decade, in 2012, I underwent emergency surgery and was diagnosed with a rare form of cancer. It completely changed my outlook on life forever—although I had always been a long term planner, I was suddenly forced to hyperfocus on the now. There was a time in May of 2012, when I was not sure I could see a future for myself after the summer. I couldn’t even think of Christmas, let alone 2020. So as 2019 drew to a close I reflected on what it means to enter a new decade as a cancer survivor and to think about time in 10 year increments.
When I learned that I had cancer I was immediately thrust
into the parallel universe. Everything around me went on with its usual pace,
humming forward with the busy-ness of normal, healthy life. Business people had
deadlines, children had seasonal school activities, people were getting
engaged, and my friends made plans to go out drinking on weekends. My little
world was rocked, all of the sudden time skidded to a stop for me while life
went on without me. I had spent my young life always looking toward the future,
planning out and achieving my goals—landing my first job and moving out at 17, getting
married at 20, graduating college at 21, starting a PhD program at 22, and
checking the boxes off my life list. I was on the up and up, constantly moving—determined
to ascend the escalator of life, my eye always on the next milestone. All of
the sudden my escalator came to a screeching halt, while everyone around me
just kept on climbing. I had encountered some faulty machinery, and I had to
step off to see what was around me in the here and now.
The future that had always seemed like an endless horizon of
possibilities was suddenly shrunken and uncertain. Would there even be a future
for me? My particular diagnosis is accompanied by some pretty alarming
statistics—a 56% chance of surviving 5 years, a 33% chance of surviving 10
years and a 10% chance of surviving 20 years. At 26 years old, it translated
into a pretty grim outlook. I began to picture myself driving along a winding road,
with a steep cliff drop off to one side. My road hugged the crevices of the
ocean cliff tightly, and my vision was limited only to the next hairpin curve—when
I would go in for my next scan. I could see nothing beyond this harrowing
swerve—did the road continue along with breathtaking views, or did it simply
end, leaving me to close my eyes and fly off the edge into oblivion? I wanted
more—there were so many things left undone, I had not achieved hardly any of my
life goals. I wanted a life with a beginning, a middle, and an end yet I was
stuck in place somewhere along the ascent to the midpoint. But would I get it?
I realized then what we should all never forget—that our length of time here is
never promised, you are not entitled to a long life.
When I could no longer look forward to the future, I started
to think only about how I could live each day with joy and health. I no longer
toiled on laying small, insignificant stones in hopes of building a future
cathedral. I woke up each day and set my focus toward things I had never
considered to be worthy goals before: drink at least one cup of green tea, eat
5 fruits and vegetables, go on a walk, stop to reflect or write, breathe in the
ocean air, talk to my friends. And whenever I could, try to find a moment of pure
joy and bask in its glory.
I have been very lucky. I went in for regular scans—three times a year in the beginning, then twice, now only once. Each anxiety inducing call from my oncologist has yielded positive conversations, small talk and a review of the scan that included words like ‘unremarkable’ and ‘unchanged’ which I had never known to be so wonderful. I started celebrating a ‘second birthday’ on the day of my surgery—when 100% of my cancer was removed. Two years, three years, four. The fifth was a major milestone as that is commonly seen as the period in which cancer will return if it’s going to. I celebrated the fifth by bringing a disaster preparedness event to students at UCLA, the place that had saved my life. Slowly, but surely the blinders on my future vision were lifted. I started to plan again. On a small scale at first but it has been increasing. My husband and I had a nearly 2 year engagement, and allowing myself to plan a wedding so far in advance was a challenge, but I achieved it. I started to think that, despite the high recurrence rate, the cancer is behind me. Perhaps I can begin to think about laying the bricks toward the long term goals and dreams that I once had.
Over the last couple years of the decade, I began investing more in my long term career path and beginning to work toward making a name for myself in emergency management—as a responder, a consultant, a writer, and a speaker. And perhaps the biggest move I’ve made toward planning for an elongated future is the birth of my first daughter in 2019. I am committed to raising her to adulthood and now I have to plan it, I am starting to let visions of this baby in elementary school, in high school and going off to college come into focus.
As we celebrate the birth of a new decade, I have taken some
time to reflect and set my eyes on the long term prizes. This week I decided to
set some goals, not just for the year, but for the decade. Both professional
and personal. I believe the more you talk about your vision and share it with
others, it stays in the forefront of your mind and your everyday actions will
cement it into being. So I want to share with you here my goals for the decade.
If you are struggling with envisioning a more long term future, certainly spend
some time thinking about your daily goals because every day well lived will
amount to a wonderful existence. As time passes you might find that you are
able to tug the blinders an inch at a time and one day feel comfortable taking a
peak into the distance.
I was very lucky in my pregnancy because it was relatively easy. I was happy, I was pain-free, I didn’t get morning sickness and I was able to go on long daily walks right up until the day of my induction. By far the hardest part of the whole parenting experience for me so far has been the so-called ‘fourth trimester’ or post-partum period. Particularly the very first 3-4 weeks was the most difficult and the main reason was breastfeeding. As special, important, and beautiful that breastfeeding can be, it can also be an incredibly painful, anxiety inducting, emotion laden imprisonment. I am happy to say that Scarlett and I have a great breastfeeding relationship now, but there were definitely dark, difficult times in the beginning when I often questioned how others could find it so amazing and whether it was for me.
I had heard from many sources that breastfeeding can be ‘hard’ or ‘frustrating’ or ‘challenging’ while I was pregnant. I took a 90 minute class at Kaiser where the instructor basically told us we had no excuse to not breastfeed. It wasn’t very helpful. I really didn’t know what, if anything, I could do to prepare for breastfeeding before Scarlett was born. I focused all my energy on preparing for the labor and delivery because breastfeeding was a big unknown and I assumed we would naturally find our way. I still don’t think there is much you can do to physically prepare for it, but I do think that really understanding what those first few weeks might be like could help you prepare mentally.
In this post I want to share the nitty gritty of my experience in hopes it might help someone. I know my experience wasn’t the easiest that could be had, but I also know that it wasn’t the most challenging. I am not a lactation expert of any kind, all I can do is genuinely convey what my world was like for the first few weeks, explain what makes it ‘hard’ and solutions that I used to cope.
The first big surprise to me was how time consuming it was. I don’t think that I really realized how often newborns need to feed before I had one. The rule of thumb is pretty much every two hours and this includes through the night. If you are breastfeeding ‘on demand’ though you watch for feeding cues from the infant and feed them more often if they desire it. Some newborns will ‘cluster feed’ which basically means feeding nearly constantly or with very short breaks between sessions. So be prepared to literally not have time for anything else in the beginning. The frequency is counted from the beginning of the feed, so if you feed at 8AM expect to do so again at 10AM, 12PM, 2PM, etc. In the beginning, my baby wanted her feeding sessions to be extremely lengthy. It was not uncommon for her to go 30-40 minutes on one side before even switching to the next. My sessions sometimes lasted more than an hour, they were regularly 40 minutes. That’s what I planned for every time. So if I needed to feed her in public, it meant excusing myself from the activity to go to the car and feed her for 40 minutes. If we had visitors, I excused myself to her room for a 40 minute feeding. If you do the math, you also realize that it leaves very little time to do much else before the next feeding commences. You get used to living basically an hour on, an hour off, for weeks. And if you are trying to also pump after each feed to increase your supply, expect to spend an additional 15 minutes or so doing that afterward. The pace was grueling, the emotions ran high, I was struggling to nourish this precarious new life and set my motherhood on the right course.
Time itself seemed to transform. It was no longer a marker for my working hours, meeting up with a friend or when the game started. It was a tracking device for my every movement—for a while I was instructed to feed 15 minutes on each side—no more, no less. I then needed to pump for 15 more minutes. I would have gone insane without a clock to time this, to give myself pep talks—just five more minutes to go. When we changed her, we took note of the time. The clock measured my life in a way that I never knew it could. I was “off work” and freed from any time dictated obligations, yet I was more bound to the minutes that passed than ever before. I tracked the time in small increments, without much thought at all to whole days passing or what the date was.
I also didn’t realize that I would need both hands to feed
her. One hand to guide my breast toward her mouth and cup it into a ‘sandwich’
and the other to guide / hold her head so that she correctly faced the breast
and give us the best chances of getting a good latch on one of the first few
tries. This meant that I wasn’t able to read, scroll through my phone, get a
drink of water, blow my nose or anything that I might have wanted to do to
occupy my mind for 40-60 minutes each session. This is why having some shows
lined up to binge watch hands free can be such a lifesaver while breastfeeding!
As much as I had been told that breastfeeding might hurt, I was unprepared for the true physical pain of it. Somehow between leaving the hospital on Friday afternoon and visiting the lactation consultant Saturday morning Scarlett managed to shred my nipples. They were scabbed over, but the thin scabs ripped and oozed fresh blood each time my hungry baby attempted to feed. I inhaled sharply and yelped ‘ouch’ and other obscenities each time she tried to latch on. I think she could sense my negative energy and instinctively knew that the metallic taste of blood was not the sweet milk her body craved. That Friday night became the night of hell as our baby screamed, wailed, and lashed out at us inconsolably as her face scrunched redder, angrier and hungrier as the hours wore on sleeplessly. When the lactation consultant saw my nipples, scabbed over and adorned with hickey-type purple ridges she knew that I needed a break. I had expected some version of ‘power through it’ which I had heard from countless friends and stories on the Birth Hour podcast. When I pumped only a few drops of colostrum after 15 minutes, she told us firmly that we needed to supplement with formula so that she could get her weight back up after losing 10% of her birth weight. She assured me that it was just a rest for a few days for my nipples to heal and I could still pump to stimulate milk production. I cried raw, unrestrained tears there in the office, trying to come to terms with my failure yet thankful that she had granted me some respite from my torturous endeavor. I also felt ashamed and embarrassed because I had wanted so badly to be a part of the ‘exclusive breastfeeding’ club. While we were able to resume direct breastfeeding after a few days and it became easier when my milk came in it was definitely not pain free until the next month. The latch would send searing pain rippling through my chest and I would have to gear up and brace myself for it when she began feeding. I would exhale slowly and count in my head, using some of the same strategies that had gotten me through her labor. I also felt the strangest tingling and burning sensation throughout my breasts after each feed. It was as if the milk was being regenerated and I could feel that sensation as they refilled slowly. It was uncomfortable and each time I longed for the relief of warm water or a compress. This was every day, 8-10 times per day. It only got better incrementally, so slowly that you could barely notice improvement but by eight weeks nursing was pain free.
Failure and Rejection
Breastfeeding is the natural way for us mammals to feed our offspring. That is why so many people assume it will be easy or that they can just figure it out. It is also why failing at it feels like the ultimate, deepest, most personal failure. What is wrong with me if I can’t even feed my baby? Am I just not cut out for motherhood? How can some people enjoy this? These types of thoughts ran through my head and tears sprung from my eyes when Scarlett turned her head away from my breast, howling from hunger but unwilling to suckle. She was frustrated with failing to latch too and horribly hungry. I wanted to help her but I felt powerless to force my breast into her mouth in the correct position and stimulate her to suck to extract milk. As we continued to try I swatted away the help or advice my mother and mother in law tried to provide. I wallowed in feeling a deep, personal rejection by my daughter when she would not feed from my breast. I felt so small, like I wasn’t fit to perform this function that should be instinctual. My own child did not want anything to do with momma’s milk and I was miserable. My husband can attest that on more than one occasion I screamed out of despair, pain and frustration, “I hate breastfeeding!” I felt inadequate as a mother and ultimately a human being. How could the wail and turned cheek of a baby reduce me to a worthless, sobbing pile of nothingness the way that it did? Somehow feeding my daughter was more mentally challenging than responding to a disaster, crafting an emergency plan, battling cancer, or any other obstacle I had yet faced in my life.
I did not expect the hunger and the exhaustion.
Breastfeeding is draining as the calories and nourishment from your own body is
literally sucked into another. I have read that you burn an extra 500 calories
a day. I thought I was eating for two while pregnant, but I felt the most ravenous
hunger of my life while breastfeeding. I needed to eat immediately in the morning
and I couldn’t last from one meal to the next without significant snacking in
between. The compounding factor was that I was in the heat of surgery recovery
while learning to do this. Physically, I was not at my best to take on this
most difficult journey. I was still on pain medication around the clock and
there was just so much to keep track of. I had to document my pill schedule as
well as every feeding, how long she fed directly on breast, how many ounces we
supplemented, whether it was breastmilk or formula, every time she had a wet
diaper, a dirty diaper, and even her naps. I felt like I was going mad trying
to document all this while it was happening. I was totally sleep deprived and
absolutely running on empty. I still couldn’t get up and down from a seating
position without assistance. My brain was racing around writing checks my body couldn’t
begin to cash. I needed to eat and I needed to sleep, but feeding her was my life’s
purpose and I was the only one that could do it. It was incredibly taxing.
Another mental and emotional challenge was the pressure of being
the only one that could feed her. As many people that surrounded us offering
help and support it still came down to me as the mother to be able to
breastfeed her. It was my sole responsibility and I felt that I could never truly
get a break. Even when we supplemented with formula I would have to be pumping
simultaneously to make sure my supply kept up. Even if my husband or mom offered
to take over one of the nighttime feeds, I couldn’t really rest because I knew
I needed to be pumping so that my body would know what her demand really was. I
had been educated on how critical those first few weeks would be to shape the
future of our breastfeeding journey. It was an immense amount of pressure that
I had not anticipated. I also did not want to give up. I didn’t want to fail at
giving her what had been ingrained into my head as the most wonderful gift a
mother could bestow. I had heard and read so much about all the benefits of
breastfeeding, the way your body adapts to give the infant exactly what she
needs based on a feedback mechanism through her saliva while attached to the
nipple. I didn’t want to deprive her of this because I was too weak or
exhausted. I felt an incredible amount of social pressure to keep going from
the constant dialogue on how superior breastmilk is to formula. Though every
day I felt that switching to a bottle would be such a mental and emotional relief.
Finally we could share the responsibility of feeding her and some of my burden
could be alleviated. But I endured, hoping that I would find a light in the end
of the tunnel. And I did.
Here are some things that helped me, by no means is this a
definitive guide or am I suggesting that all of these things will help every
person. But I know I wouldn’t have made it through my own journey without some
of these external factors.
I must give a huge shout out to Kaiser Permanente’s South Bay Lactation Center. We met with two different lactation consultants there and both were extremely helpful. It was amazing to already have the appointment set up for the day after we were released for the hospital. Even though we were struggling so much I feel like I still would’ve hesitated to reach out for help, too stubborn to accept that I needed assistance. They always set follow up appointments for us, taking the questioning of whether to go back out of the equation. They made it seem normal to struggle. They were able to hook me up with two free months of a hospital grade breast pump for home usage, which was oh so helpful. They have a super precise scale that will weigh baby before and after a feeding so that you can actually know how many ounces (or milliliters) he or she is transferring. This was extremely helpful, validating that we were making progress and giving me peace of mind that she wasn’t going hungry after I fed her directly on the breast since we had no way to measure at home. They also would observe the latch and make sure you were getting it right. I felt like I had the opportunity to ask questions and better understand what was happening. They gave us a detailed print out of instructions after each visit, which was so crucial since my mind was literally mush at that time—trying to keep track of all the tiny details of Scarlett’s life made it hard to remember what was said during conversations.
There are a few things I would recommend for those of you embarking on your first breastfeeding journey. Gel soothing pads were a huge, huge help for me in the first few weeks. My nipples were always some degree of sore around the clock and these really helped to take the edge off. I would put them in the refrigerator during each feed / pumping session and then they’d provide instant cool relief as soon as I was done. Nipple butters were also a regimen that I indulged in, I had two different kinds and I kept one in the bathroom and one next to my nursing station so that I could apply as needed. It may seem basic but showering was huge. I always hear moms say that they go days without showering while taking care of little ones, but I seriously don’t think I could’ve functioned without it. Each day it was the one activity that allowed me to feel human again, the warm water rinsing over my body and reminding me that I existed for more than just to feed a newborn. It felt amazing on my sore breasts and it was the one time of day they were free from a bra. I seriously would not skip this, it was the highlight of so many of those early days. I also had gel compression pads that could be heated or cooled for relief, I didn’t use these as much as I wanted to frankly because I was so exhausted at the end of each feed it seemed like too much to even get up and microwave them. The few times I did use them it was with assistance from one of my supporters and they felt awesome! While you’re pregnant, download a baby tracker app and get prepared to track away—at the lactation consultant and the doctor’s offices they would always ask how many feedings, how many wet & dry diapers in the last 24 hours. I literally don’t think I could have remembered this if I hadn’t been meticulously tracking it in my app. The Brestfriend pillow has also been my most prized possession. We still use it and I highly recommend it, it’s the perfect level for baby and it buckles around you so that it stays in place. The pouch that it has is also perfect for storing your essentials—I have nipple butter, headphones, my Kindle and her nail file in there. I also highly recommend making sure you get all your essentials together before settling in for a session, since you never know how long she’ll want to nurse for or if baby will want to fall asleep on you right after! Cell phone & charger, water bottle, Kindle / ipad, the TV remote, a burp cloth for baby, a snack if you need it…
I can’t stress enough how important it was to have my husband there to help me. I really don’t know how single mothers do it and I am so incredibly thankful for his support. I also had my parents come visit for a week in the beginning and they were amazing. So seriously, don’t be shy! Enlist friends and family. The most helpful things they can do are help with cooking, cleaning dishes, washing your breast pump parts, refilling your water bottle, doing laundry, even feeding you directly! There were so many times I was grateful for my mom to literally put food in my mouth while I was starving but using both hands to feed the baby. Your helpers might not be able to help with directly breastfeeding, but they can help with everything else. It really does consume your whole life, so any help you can get with your other normal functions is going to work wonders for your sanity.
Alternatives to Direct Breastfeeding
Knowing when to take a break from breastfeeding (with the
help of a lactation consultant) really saved our long term breastfeeding
relationship. I thought that it might be ruined when we fed Scarlett formula.
But it was absolutely crucial for my mental health and to let my breasts heal. I
was able to pump during this time to continue stimulating my breasts and help
my milk come in. We bought formula and my husband being able to feed her
formula with a syringe was a lifesaver. I felt like a weight was lifted. I
would recommend researching and even purchasing a small store of formula to
have on hand for after birth even if you plan to exclusively breastfeed. We had
to frantically go to the store and procure some, and I found myself falling
asleep out of pure exhaustion while trying to figure out which brand was best
to feed her.
Light at the End of the Tunnel
Gradually, these difficulties got easier. I got stronger I guess, or we just learned together through practice how to make the symbiotic process work. I became accustomed to the routine and learned what to expect. I am so thankful now that I stuck through those very dark, very low days. Breastfeeding now seems like it is actually the easier way to feed her—no bottle or pumping accessories to worry about washing multiple times a day, no mental inventory on formula that I have to keep up and remember to buy. I can give her everything she needs freely and easily from my body and it carves out skin to skin cuddling time for us each day. It wasn’t easy but I appreciate the benefits that this most difficult battle has bestowed on my daughter and I hope I can prepare and inspire others to undertake the journey. I hope this knowledge can help you mentally prepare and know that it isn’t all the perfectly lit, peaceful Instagram posts you see. It’s ok to not love breastfeeding, and it’s ok to choose not to do it. And if you suffer while embarking on this endeavor, know that you are not alone.
For the past 3 months I have been spending all my time with our
12-week-old daughter, Scarlett. It’s been quite a change of pace for me as I’ve
been watching the wildfires take off from the confines of my couch, fighting
the urge to get out there and get involved to help coordinate response. My
husband JB worked long hours at the Saddle Ridge Local Assistance Center for 4 consecutive
days and on the fifth day when he was supposed to be home earlier he had to stay
late to work a new EOC activation for the Palisades Fire. This meant more FOMO
for me and more hours of one-on-one time with Scarlett. As much as staying home
goes against my nature to get out into the field and dive straight into these
emergency management challenges, I have tried to really embrace my new,
non-permanent role as a stay at home, full-time mother to Scarlett G and use
this new lens to expand my viewpoint on the human experience.
Having spent every day and night of her life with her so far, I have had the priceless opportunity to watch a brand new human being emerge from the womb, adjust to a shockingly different environment, and begin to grow into a little person who tries to communicate. It has been nothing short of miraculous. I recently took some time to reflect on what she has shown me firsthand about the innate abilities of human beings to adapt and overcome the incredulous challenge of being helpless, immobile, and incapable of speaking in a massive obstacle-laden landscape. Before we fill our worlds with layers of experiences and years of learning, what are the native traits that we develop immediately, to cope with such a traumatic transformation as transitioning to life outside the womb? Spending time with Scarlett has allowed me a unique ‘back to basics’ perspective on our human resilience before it is colored by the complexities of adulthood. She is simply trying to survive, and it’s been fascinating to watch her develop behaviors that promote growth and endurance in this whole new world.
The Power of Self-Soothing
In the first few weeks after we brought her home from the
hospital, Scarlett would sometimes cry unconsolably. As a newborn, crying was
really her only way to communicate and I am sure there were many things that
she found frightening and uncomfortable about her new home. It used to take mom
and dad spending serious time rocking her, swaddling her, cuddling her or
speaking to her softly to get her to calm down. But as she has grown, she has
found her own way to calm herself down and has gained a very powerful tool. My
baby sucks her thumb, and it instantly pacifies her. She constantly resists the
pacifier, which we’ve come to terms with although we still offer it from time
to time. Scarlett has learned that her own two lips can form the perfect fit to
cradle her thumb and turn it into a readily available calming tool. Now
whenever she gets bored, mildly uncomfortable, cranky or tired she will simply
turn her head, find her thumb, and breathe a sigh of relief. She puts herself
to sleep this way and wakes up in a much better mood! This has really shown me
how powerful it is for adults to discover effective tools of self-soothing that
we can practice in our daily lives.
Now, I’m definitely not advocating that we suck our thumbs,
but it is incredibly empowering to be able to take control of a stressful,
irritating mindset and transform it into peace and clarity. Practices such as
deep breathing, stretching / yoga, meditation, walking or exercise, writing or
reading, going outside, or having a hot cup of tea can really work wonders on
helping to soothe our anger, anxiety, or irritation. It is important to try a
few soothing mechanisms and learn what works best for you as an individual so
that you can keep it in your back pocket as a frontline defense when you are
thrown into high-stress, crisis situations. I think coping tools which rely the
least on external resources are the most reliable since you need only to
exercise a behavior within your own reserves. For me, it’s walking that will
immediately calm me down. Stretching and deep breathing also help me to eradicate
stress and center myself during times of crisis.
The Power of a Smile
I struggle to identify when Scarlett’s first smile occurred
because I feel like she has been smiling since day one. But she has certainly
learned to utilize her smile as a tool to break the ice with new people and to melt
mom and dad’s hearts into giving her whatever she wants. It might seem simple,
but I think there is an important lesson behind the fact that smiling is one of
the earliest behaviors that babies develop. A smile is the gateway to
friendship, to developing social capital with other humans around you. As a
helpless baby, she’s learned quickly that smiling gets people to smile back at
her and emit affection and love. Smiling gets people on her side. I have
noticed this as her mom as well that walking around with a smiling baby
instantly endears me to strangers at the grocery store or on the streets.
People who would normally walk by me with their hardened big city expressions,
completely open up to me and I feel more welcomed and acknowledged wherever I
While it’s very basic, smiling and establishing good
relations with our colleagues, neighbors, and fellow human beings is a crucial survival
tool. The more that community resilience is studied the more it is shown that having
a strong social fabric within a community is correlated with the ability to
bounce back more quickly after a disaster or crisis. Exercising good relationships
makes us happier people and gives a network to rely on when times get tough. It
is also well known within the disaster world that you are most likely to be
helped by neighbors or people around you when a disaster occurs since first
responders will be spread so thin. A smile today is an investment in your future
social capital—it’s easy and completely free.
The Power of the Unknown
New babies spend the majority of their time on their backs exerting minimal energy to look up at people and things around them. When placed on their bellies, babies typically struggle. They have to work extremely hard just to lift their massive heads off the ground and look around. For some reason, Scarlett loves ‘tummy time’ and I think I know why. Even though she must push her neck muscles to new extremes, she is mesmerized by this different perspective on the world around her and will work as hard as she can to be able to access this window into the unknown. From her belly she isn’t stuck staring at ceiling fans and drab white paint. She can see blades of grass, plants, the lower shelves of bookcases, the print on the bedskirt, mommy’s feet, and the detailed pattern of the rug. There is so much to see and discover from this new perspective. The added bonus is that if she works hard enough she will be able to crawl very soon from this position, which will add the whole new dimension of mobility to her human experience.
It’s easy to look at things the way that we always do, the way that we always have. We can simply lie on our backs and see a sterile, clean cut version of the world with minimal complications, where we see the people that choose to come in and out of our scope of vision. It’s much more challenging to force ourselves to turn around, seek out new places, try new activities, interact with different people, languages, sights and smells. Sometimes we have to take on a new challenge to open up a new dimension of ourselves and unlock the next level of our lives. If you want to someday be able to move up or move on, take some time today to open up a new portal into the world around you by analyzing the challenges you have in front of you, perhaps one that you have been ignoring just because it seems too difficult to even begin to tackle. Think about what it would take to overcome this challenge and begin by taking baby steps toward surmounting it. It’s not about improving what you know, it’s about embracing what you don’t know.
Even though I’m the mommy and she’s the baby, Scarlett G has taught me a lot about the human experience. I hope to be able to use the lessons I’ve gleaned from her survival mechanisms to better my own adult life. When you strip away the complexities of our adult world and truly go back to basics you can discover more than you might have imagine. Even though I’m not jumping out to coordinate the next wildfire response I am learning something new about resilience right here, in my own home. So today I challenge you to practice one of your self-soothing powers, to smile at a stranger and to identify a challenge in your life that you can work to overcome. You never know what new worlds will open up to you on the other side.
It’s taken me
some time to write about Scarlett’s birth and to process the whole experience.
It almost goes without saying that these past 2 months have absolutely changed
my entire life, yet I am saying it because that fact can also not be
understated. Newborn babies are incredibly sweet and angelically cherub-like in
their chubby, rosy cheeked aesthetic. Their earliest smiles will pull at your
heartstrings in a way that you can never have fully anticipated before you see
their little faces and big curious eyes. Yet the first month also brings a
suite of new challenges the depth and intensity of which you never fully
understood, certainly not leaving much time for anything extra.
But I’m happy to say that now that we are nearing the 2-month mark, we’ve gotten into a pretty good routine that’s allowed me some time to get back to the computer to write. As a follow up to my earlier post on how my experience with cancer affected my outlook on pregnancy, I wanted to share some nuggets of advice now that I’m on the other side of the experience. In short, I was induced and had a 43-hour labor, including 3.5 hours of pushing and a diagnosis of ‘failure to progress’ through the pushing stage. The whole thing ended in a C-section. It wasn’t a great experience, but I’ve bounced back and my little angel is more than worth it. Here are some recommendations I have on what you can do ahead of time to maximize your resiliency through a difficult (or even an easy!) labor.
Education is Empowerment
I went into pregnancy with very
little knowledge of what it would be like, and what factors to consider when
planning a birth. Like most young American women, I just assumed you go to the
hospital and they guide you through it. I thought home births were for new age
hippies. I didn’t have many close friends or family who had gone through
pregnancy and I had never seen a birth.
Like a good former academic, I purchased some books about pregnancy when my pregnancy test first lit up positive. What to Expect When You’re Expecting and the Mayo Clinic Guide to a Healthy Pregnancy were my first purchases. But it was 50 Things To Do Before You Deliver, a light-hearted, brightly colored listicle of a book that brought me to the best resource I discovered during pregnancy. The book suggested listening to birth stories, and specifically recommended a podcast called The Birth Hour. After my first listen, I was hooked—it really changed how I thought about the whole process and broadened my perspective of what birth could be. I was already midway through my second trimester by the time I started listening, but I have to say that it was the single most valuable way that I learned about birth.
Learning through listening to real
birth stories from other women allowed me to be exposed to a very wide range of
possibilities. It was striking to hear how each experience was unique, yet as I
began to listen religiously during my daily walks, I began to pick up on common
patterns to labor and delivery. Investing the time in hearing these different
perspectives was so much more educational than just reading a medical article
or book chapter that listed out different medical interventions or the stages
of labor and what to expect. I really felt like I understood how certain
decisions—like whether to get an epidural and when, might impact the course and
outcome of labor.
I learned why many women chose to
go the route of home birth or birthing center rather than hospital, after
hearing multiple stories about pushy hospital doctors or the detached,
nonpersonal experience of having a stranger who viewed you as a medical record
number rather than a person deliver your baby. I listened to women describe how
real and beautiful it was to experience all of the feelings throughout the
labor—pain, relief, and pure joy. Many women believed they really benefited
from developing an understanding of the full capabilities of the body and how
we are meant to reproduce by going through the delivery unmedicated.
Another benefit to learning through
birth stories is that you are inherently learning through multiple sources.
Whenever I delve into a new subject I make sure to use multiple avenues of
learning so that I can cross-reference the most salient points from each and
get a more informed perspective. We also took a La Maze class through Kaiser,
which added another layer to my education. The class didn’t start until I was
35 weeks pregnant, so I was at the tail end of my pregnancy and we weren’t even
sure we’d finish if the baby came early. The class reinforced much of what I’d
picked up through the Birth Hour and allowed us to practice breathing and
movement techniques together. The instructor had given birth 5 times—all
unmedicated. She had a strong preference for natural labor but discussed medication
options as tools that you could turn to in your toolbox—under certain
circumstances they could be very beneficial.
Know Your Birth Philosophy
I recommend becoming educated about the wonderful
world of birthing as early as possible. This allows you to choose from the
beginning what type of care provider you want to seek—midwife or OBGYN, and to
begin advocating for yourself and your birthing preferences up front. You may
hear about a Birth Plan and how you need one. You’ll probably find it on the
checklists of the pregnancy apps you’re using. Or you may be handed a standard
paper birth plan to fill out with check boxes from your doctor’s office, like I
was. However, I would advise against developing too rigid of a birth plan. I
don’t believe it’s a checkbox kind of activity—these are not simple black or
white, yes or no type questions.
The more I reflect on my experiences, it
becomes clearer and clearer what a grey world it is. That’s why I recommend
understanding the different techniques that might be used, particularly if you
are being induced, and evaluating how you feel about each one so that you can
develop a sort of birth philosophy rather than a hard and fast plan. In my
case, they used a foley balloon to mechanically induce dilation for the first
12 hours of my labor. While it didn’t work well in my case, I’m glad we went
this route rather than the cervix softening medications that are sometimes used
to start labor. Understand each of the tools in your toolbox and set an overall
goal for your experience. Then, you can match your tool selection with the way
your labor progresses to help you meet that goal. It is definitely important to
have a birth partner / labor coach / doula to discuss this with beforehand,
this person should understand how you feel about the different options and be
able to advocate on your behalf if you are not able to during labor. Believe
me, it can get intense quickly, especially if Pitocin is involved, and your
ability to have a rational conversation may be greatly diminished.
In my case, my birth philosophy was to approach the experience as naturally as circumstances would allow but I was not against utilizing pain medications if my labor became particularly long or difficult. I researched alternative pain relief measures and prepared to use tools such as aromatherapy, visualization, music, massage, breathing, and movement. I was against being induced, but given my doctor’s stern recommendation that I was at high risk of developing preeclampsia due to my pre-existing chronic hypertension, I was willing to undergo induction. However, I was not comfortable with inducing any earlier than 40 weeks, despite her initial recommendation of doing it at 38 or 39 weeks. Due to hearing the many induction stories on the Birth Hour I was well aware that beginning labor through medical methods often leads to a ‘cascade’ of medical interventions until the baby is born. Knowing this beforehand, I came to terms with the fact that I would be a lot more likely to ask for the epidural if I was induced—I had heard time and time again about how Pitocin can create extremely intense contractions as the chemical forces your uterus to contract, and often does this overly well.
Having a birth philosophy ended up suiting me very
well. I did not feel like I had failed when I asked for the epidural about 24
hours into my labor when I had failed to progress in dilation at all (I was 1.5
the entire time) and was exhausted by the frequency and intensity of the Pitocin
induced contractions. With the epidural, not only was I able to get some rest overnight,
my body was also relaxed enough to dilate to 10 centimeters. I’m not sure if I would’ve
gotten there without it.
A year earlier I had used my emergency management
skills to plan my own wedding, developing a full event action plan complete
with a down to the minute timeline, set up diagrams, contact rosters and
organizational charts. Unlike weddings, birth is one of the few things in today’s
perfectly planned, calendar-centric world where you cannot anticipate the
timing and progression of events. It was both freeing and a little intimidating
going into the birth experience knowing that I must relinquish control of the
process. My baby and my body would guide me through and I had to trust them.
For our La Maze class, we were instructed to identify an object to serve as a ‘focal
point’ during our breathing and laboring. I decided to make a vision board with
relaxing imagery and motivational quotes. One of the phrases I selected was:
Birth isn’t scripted, it unfolds. And through 5 weeks of practicing with the
focal point in LaMaze, I think I truly came to believe it.
This mentality helped me greatly when the
doctors recommended that I be moved to the operating room for a Cesarean
Section after nearly 4 hours of pushing. While my birth philosophy had always
involved a preference for birthing through a vaginal delivery, I knew in the
back of my mind that a C-section was a possibility. My own birth was via C-section,
and I had known a few friends recently who had to give birth this way even though
it was not planned. One in three births in the United States occur via C-section,
and I knew that even though Kaiser prided themselves on having a lower rate
than most and doing everything they could to encourage vaginal deliveries, the possibility
was there. I remained calm and was, at that point, grateful that we were most
definitely going to meet our baby very shortly.
One of the reasons I was able to remain calm and matter of fact during a time when the doctors said many women are in tears and extremely frightened, was because I took some time during my third trimester to reflect on my strengths. Going into labor, I wanted to visualize myself as strong, as a survivor. Writing has always helped me process things and create deeper understanding in my own life, so I wrote about how my experience as a cancer survivor shaped my mentality as I approached labor. While not everyone may have as dramatic of an experience to reflect on as I did, I challenge you to think critically about life experiences where you were strong–physically or emotionally–and channel that inner strength as you go into labor.
teacher told us that she would rather give birth than have strep throat. In her
experience, strep throat was way more painful. I think most of us were skeptical
about this, given the many horror stories out there about labor and the way
that it is depicted in popular culture. But, her point was that this pain has
an end game, it has a purpose, whereas illnesses and broken bones do not. You
can recall an experience like an illness, injury, training for a marathon or
sport, or even getting through a difficult divorce where you were resilient and
use that documented example to show yourself why you will get through labor.
In addition to
using a past example, you can also strive to cultivate endurance while you’re
pregnant. Doctors recommend walking and other moderate exercise while pregnant as
healthful for both mom and baby. As you get further along it can feel pretty challenging
just to walk for 30 minutes, especially if there are hills or heat waves
involved! As you continue to conquer physical milestones during your pregnancy
you will be creating an endurance in your body that can be called upon during
delivery. Yoga and meditation have also been shown to promote wellness in
pregnant women, and fostering this strength of mind-body connection can work
wonders on boosting your stamina during labor. I walked pretty much every day right
up until the date of my induction, and practiced yoga regularly throughout my
pregnancy—both of which I credit with helping me build the power to push for
nearly four hours.
While I was ultimately
unsuccessful, I have not let that bring me dismay. My baby’s positioning wasn’t
great—her feet were crammed way up in my left ribcage for the entire second stage
of labor and she refused to budge even though the nurses told me I was pushing
correctly (as evidenced by the three stools I passed in the process!). I chalk
it up to her not being ready, and the induction process as a whole not being
effective in convincing her it was time to make her appearance. But the
important thing is that she is here! Her apgar scores of 8 and 9 upon birth and
she was happily average on all accounts, well except for her thick mop of
In this post, I’ve tried to summarize some of the main takeaways, but if you’re interested in more details on my lengthy labor, you’re welcome to read my full birth story (be aware it is 8 pages long!!).
As I approach the due date of my first child this weekend, I am reflecting on how this pregnancy journey has been shaped by my experience as a cancer survivor. For many young moms, labor and delivery will be their first / most serious experience with the medical system, and possibly their first overnight stay at a hospital. And many cancer survivors are older, already mothers and not trying to conceive while in recovery. As someone who was diagnosed with cancer (a very rare clear cell sarcoma within the colon) at 26 years old, and becoming a mom afterward at 33 years old, I find myself in a unique position—with both benefits and drawbacks.
When I got the diagnosis in 2012,
becoming a mother was one of the primary goals that I quickly realized I still
wanted to accomplish with however much of my life that remained. I made a
bucket list of sorts and having a child was right up at the top. Of course, to
create the ideal environment to raise one would take years. I had not yet found
my partner, my career was not yet well established and certainly living in a
house with four roommates was not the best place to raise a child. It took
time, and I’m forever grateful to have had these 7 years to get where I wanted
to be; here, as I am about to experience the joy and journey of motherhood.
With the goal of ending on a
positive note, I’ll begin by addressing downsides to going through pregnancy as
a cancer survivor. The first is that you can’t go for your normally scheduled
follow up scans. After primary courses of treatment such as chemotherapy,
radiation, or surgery, cancer survivors are typically kept under surveillance
for years through follow up imaging to ensure our bodies are still cancer free.
Unfortunately, MRI’s / PET Scans and babies in utero don’t mix. Depending on
the frequency your doctor is recommending, this can certainly throw a wrench
into your follow up care plan since pregnancy is more than 9 months and many
people are supposed to go multiple times per year. Skipping recommended scans
can certainly make a survivor nervous because the fear of recurrence is
omnipresent, very real—always there, just out of sight. Clear scans keep you
reassured of your health and help you continue forward on your life track with
reduced anxiety. I am very fortunate in that being 7 years out with no
recurrences I have only been going annually for the past couple years. My
oncologist actually approved an even longer gap for me to accommodate my
pregnancy and recovery—waiting about a year and a half until Spring 2020. While
it’s a little nerve-wracking to be unsure of what your body is up to for that
length of time, at over 7 years I am feeling pretty good about this–perhaps
I’ve graduated to the 18-month interval from the 12.
The second downside of approaching this as a cancer survivor is the heightened worry with all that can go wrong in pregnancy. There are a lot of tests, many different criteria for levels in your blood draws, blood pressure, your weight, protein or glucose in urine. I actually did experience elevated fear and paranoia that I know is a kind of PTSD from my cancer. At the beginning of my 2nd trimester, my liver enzymes (AST/ALT) mysteriously shot up and I had to go for several repeat blood tests, which continued to escalate to levels over 200. This can be a marker of liver damage or of Intrahepatic Cholestasis of Pregnancy or possibly preeclampsia. Trust me, Google will show you lots of different disorders this can be a foreboding symptom of.
I was referred to the high-risk
doctor and a liver specialist. They even performed an ultrasound on my liver to
check for any damages or suspicious lesions. Boy was that scary for me, it was
the first time since my original diagnosis that I had been told something was
abnormal and needed to be investigated. It was so tough to relax and think
positively as the creeping, agonizing panic of something being wrong with my
body began to sink in from the sidelines. When your body has psyched you out
once already by throwing you a super-rare-cancer-at-26-years-old-wildcard you
are constantly on your toes at any little sign that something isn’t right. Even
after 7 years, I continue to be a bit of hypochondriac, but this was the first
time that doctors were concerned too. In my case, my liver enzyme levels simply
began dropping until they returned to normal levels. No explanation whatsoever.
The body is still nature’s mysterious machine in a lot of ways. For as much as
we seem to decipher about it there is so much more that we have yet to understand.
But as a cancer survivor, it is difficult to trust your body to just be normal
sometimes. You know all too well that just because you feel fine and you’re
functioning perfectly well that doesn’t mean there isn’t something sinister at
play in your cells.
I think the biggest benefit of
approaching pregnancy as a cancer survivor is that I’m not afraid. The idea of
labor and delivery isn’t really scary to me the way it is to some first-time
moms. A lot of people are afraid of getting a C-section, afraid of the
recovery, afraid of the scar, and fearful of infection. But having already gone
through a major, exploratory, emergency surgery on my abdomen I’m not scared of
the possibility of a C-section. It’s not my first choice for how I deliver my
baby, but I have no anxieties about undergoing the procedure if it’s necessary
for a safe delivery. The video we watched in LaMaze class talked about how they
slice through the abdominal walls and the layers of fat and muscle, then pull
it apart so the baby can come out. It made it sound kind of gory and I almost
wonder if it’s designed to scare you—but 7 years ago that happened to me. It
was even worse, a large vertical incision was made through all my layers and my
intestines sliced open, a section removed, then stitched back together. They
poked around at my other organs too since they didn’t know what they were
dealing with at the time, hence the term ‘exploratory.’ That sounds a hell of a
lot more intense than a small, measured, horizontal incision on the uterus. The
recovery? Yeah it was no fun. But I made it, I was able to go on short, slow
walks tethered to my IV pole within a couple of days. It took a couple weeks
for me to be able to go on longer ones around my neighborhood, after the wound
vacuum was removed. Yes, my wound did get infected. Due to the emergency nature
of my surgery I couldn’t do a proper bowel cleanse / fast beforehand. So I had
to wear the vacuum for a week after the infection was discovered, then do
‘wet-to-dry’ dressings and change them myself twice a day until it healed from
the inside out. What are the odds of that happening with a C-section? Very low
I’m sure. The Cesarean is such a controlled, well-practiced procedure. One in
three births in the U.S. occurs through this method. Even the emergency ones
are nothing in comparison to the major, complex surgery that I’ve already been
through, recovered from and owe my life to.
In terms of vaginal delivery and
the whole labor experience, I know many people are afraid of the pain, so many
want to request an epidural immediately to spare themselves from horrible
contractions. I am not so afraid of it, although it is the unknown so I’m also
not opposed to the epidural as a tool for a difficult and prolonged labor.
While it’s true that I have never experienced labor and probably nothing
similar, I did experience prolonged pain and discomfort in my stomach for
months before the surgery. The doctors told me that I must’ve had a high
tolerance to pain to not have come in sooner. This gives me hope that I’ll be
able to endure labor pains.
Am I afraid of the epidural? I’m
a bit hesitant about it, since I’ve never had a needle in my spine before. I’m
hoping not to get one, but again if it will help me relax to get through a
prolonged labor I will. This is a routine procedure that I am confident the
anesthesiologist is well-practiced in. I do have the benefit of knowing I’m not
allergic to anesthesia, having undergone general anesthesia for my surgery.
I’m comfortable in hospitals.
They’ve saved my life once before and got me on the road to full recovery.
Needles, IV’s, and blood draws don’t scare me at all because I’ve gotten used
to these medical tools through the sixteen MRIs / Pet Scans I’ve had for follow
up care. None of these interventions bother me because I literally owe my life
to the benefits that modern medicine can provide.
Most importantly, I think the
cancer has prepared me for this experience in a positive way because I know I’m
a survivor. Because I’ve gotten through something far more horrific and
menacing than childbirth. I know that my body can recover, that I can heal and
fight off infections. I know that I can take small quantities of necessary
opioids for pain, I’ve felt the itching side effects, and I know that I can
wean myself off them successfully. I have been through a much scarier, bigger
battle than this and I am still standing strong.
I approach my first birth with
confidence, with wisdom, with gratitude, and with excitement that this time
when I go to the hospital it will be for something beautiful. This time, my
body has been growing a human being, not a malignant neoplasm, and the birth of
this baby will be spectacular and celebrated. I am experiencing a normal human condition—a
womanly rite of passage that has given longevity to the humanity for
generation. My body is meant to do this and this is one of my dreams.