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!
I want to start by apologizing. I am sorry that I have not been more vocal on the greatest issue facing America today, which is the huge disparity in the way that black citizens are treated compared with white citizens. This racial inequity permeates all elements of our lives, including my life’s work on disaster resilience. Time and time again race is shown to be affiliated with worse outcomes after disaster, as we are currently seeing with the higher number of cases and mortality rate in the black community with COVID-19.
I was quiet because this is uncomfortable for me. This is not my area of expertise, and quite frankly I am among the many white people who grew up being taught that racism was a thing of the past in America. I grew up in a rural, predominantly white part of the country. I was taught to view all people as equals, but was not heavily exposed to other cultures or people who looked different than me as a child. I was not aware of the disadvantages that my black friends and colleagues had inherited from centuries of systemic racism. While I believe that I have earned a lot of my successes through hard work, I have undoubtedly walked through life with the inherent privilege of whiteness and that should not be overlooked when I evaluate where I am today.
I may never be able to understand firsthand the extent of racism in the United States and what it is like to fear for your life in every interaction with a police officer. But I can try harder than I have. This past week has been a time of intense self-reflection for me and the last thing I want to do is sweep this under the rug and go on with my life because I have the privilege of being indifferent.
Indifference is as detrimental to change as the instigation of violence against people of color. Silence is complicit. As a white woman who does not consider herself to be racist I need to take action and speak out against these atrocities that have been committed against my fellow human beings. Innocent lives have been taken simply because of the way blackness is still perceived by many white people.
I have heard the term ‘anti-racist’ a lot this week and I’d like to be able to say that it applies to me. But I don’t think I’ve done enough yet to deserve that adjective. I don’t think I’m racist but I haven’t been vocal enough to be an anti-racist. I think that applies to many of my white friends. Now is the time for us to change that. I know I can never be an expert on this, but I want to make a difference as best I can by changing how I live the life I am already living.
I want to ask for help from my black friends and people of color in my life who are willing to educate me. How can I enhance what I am doing in the following arenas to support you and contribute to alleviating racial disparities?
I am amother. I want to raise my child to understand other cultures and be loving and unbiased toward people of color. What children’s books, toys, games, activities are out there that you recommend I invest in? I want to be an anti-racist parent.
I am a writer. I want to use my platform and my voice to elevate people of color and amplify their voices. What books can I read to educate myself? What social media accounts & other writers should I follow and share? Especially with regards to resilience and race, I would love to be able to reference authors of color in the resilience book I am working on. I want to be an anti-racist writer.
I am an Emergency Manager. I want to fully consider racial disparities when planning for disasters and mitigate in advance how black communities and people of color might be marginalized in a disaster. What resources are out there for planning, responding and recovering from disasters that I need to include in my emergency management toolbox? I will soon be leading 23 campuses in emergency management. What can I share with them? I want to be an anti-racist Emergency Manager.
I am employed. I am one of the lucky ones, who did not lose her job during the pandemic. I am one of the few who was actually able to find a new job and take a step up in my career during the pandemic. How can I best give back to this movement? Is it best to donate locally or to larger, national groups? I have seen many lists of organizations, but I would love it if a friend could recommend one or two that he/she can personally vouch for so that I know my money will make a difference. I want to be a financial backer of the anti-racist movement.
I am an engaged citizen. I pride myself on voting in every election and paying special attention to local politics, I am even a commissioner in my city and have been a neighborhood leader in the past. What laws are most important to lobby for now and at what level does the law need to change? I want to be an anti-racist citizen.
I am a friend. I want to connect with my friends of color on a deeper level. I feel like sometimes in the past I’ve avoided conversations about race because I was afraid of saying something wrong or offending. Not anymore. I want to hear your personal stories, how you are feeling and your own reflections on this time of dynamic change and uprising in this country. There is no better way to foster resilience than to share your stories. I’ve been reaching out, but please feel free to send me a message, share your story and let’s connect. I want to be an anti-racist friend and ally.
Please comment or send messages if you can help with any of these asks. I’d like to hear from my friends of color first, but once they have spoken I’ll appreciate input from fellow white allies as well.
Let us lead our lives thinking first about checking our privilege and always keeping the mantra in the forefront for our minds: Black lives matter.
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.
I am an Emergency Manager–but what the heck does that mean? I like to explain my job as a California Emergency Manager as ‘like FEMA but for the state.’ While the majority of the general public has not heard of emergency management, they have heard of FEMA and generally understand that FEMA works on disaster response, recovery and preparedness. Positions like mine exist for cities and counties too, as well as universities, school districts, museums, and many large corporations like Disney, Target and Walmart.
So right now, while the world is in a state of emergency due to a global pandemic I want to take some time to tell you what we emergency managers are doing and further explain why our function is important. It’s important to note that we are working very collaboratively with public health professionals and that while most of the subject matter expertise is in their court, we play a major role in supporting them.
Facilitating the resource request process is a critical function of emergency managers. When we say ‘resource’ it can mean any supply, material, or personnel needed to accomplish the mission. The scope of this disaster is massive and literally every entity is involved in this response, which makes resource coordination trickier than usual. In California, when a city runs out of a resource, they will in turn ask their local county if they are able to help, if not the county will make an ask for state assistance. If the state can’t fill the request, we will ask the federal government for help. Emergency managers are in charge of creating and managing the way that this information is transmitted by the various levels of government. These are the common types of resource requests that we are helping with in the pandemic:
Personal Protective Equipment such as N95 masks, gloves, Tyvek suits and gowns
Disinfecting wipes and hand sanitizer
Trailers to provide isolation space for quarantine of homeless populations
Personnel to assist with food distribution
Personnel to assist with onsite logistics for medical field hospitals and drive thru testing sites
Cots, blankets, and hygiene supplies for congregate shelters
Meals Ready to Eat (emergency food for first responders)
Communication equipment to support virtual operations to ensure better social distancing.
Body bags for mass fatality planning.
It’s important to note that the public health side of the house has their own resource ordering system so they handle the ordering and distribution for actual medical equipment and medically trained staff.
Producing Situation Reports
Another key function of emergency managers is to coordinate information. An incident like this is incredibly dynamic as the situation changes daily. We try to keep track of all the updates in our assigned areas and produce reports that can be shared with partner agencies to keep everyone on the same page. We also work with GIS folks to create dashboards that are interactive and accessible to the public. We are working closely with public health on this, since they are the keepers of the official case and fatality counts. Information you might not think of that’s important to us include:
Actions of other departments within our agencies
Emergency Operations Center activations within our areas (the coordination centers where we work together)
The status of emergency proclamations by our local governments and requests for state / federal assistance (the legal documentation of states of emergencies)
The number of resource requests pending and filled
The status of first responders (i.e. are police and fire at full functioning status)
The status of executive emergency orders such as business / public facility closures, banning of gatherings, etc.
Press conferences scheduled / public information that has been disseminated
While collecting data for situation reports from other departments, emergency managers are also learning about continuity of their organization. This is an especially important function of private sector agency emergency managers. In an event like COVID-19, it’s important for us to understand how employee absenteeism and/or telework is impacting the mission of the agency overall and if we are still able to meet our customer service goals–including continuity of government for public agencies. In a pandemic this is really critical and I think that as the situation continues to evolve the focus will shift a bit toward organizational continuity, especially as closures endure for months. How will businesses stay afloat? Can their models evolve toward delivery or online service / products? I’ve seen many yoga studios and gyms move toward online courses and our schools are being forced to rapidly evolve to meet their goals. Emergency managers (and business continuity managers) play a huge role in planning for this and helping the organization continue to meet its goals.
Managing Public Information
Emergency Managers also have a responsibility for keeping the public informed about emergency actions that are being taken. An emergency management department typically has a Public Information Officer assigned or works closely with a PIO from another department to ensure that talking points for press conferences are vetted, press releases have actionable and accurate information and that social media is engaged with current information. During press conferences, I’ve seen the Emergency Management Director of California, as well as the City of Los Angeles, make appearances. I have also seen agencies utilizing the Wireless Emergency Alert system (i.e. the Amber alert function on your phone) to send messaging to all cell phones in their areas. I’ve gotten several notifications with COVID-19 updates from my City’s emergency notification system too.
Planning for Recovery
As Emergency Managers we plan for all functions of the ‘disaster cycle.’ That includes planning for the aftermath of the incident–even though it feels like it might never come in this one. What is the future going to look like economically for the agency? How many citizens in the jurisdiction might be impacted by unemployment? In this disaster, because we don’t have debris removal or rebuilding to worry about, our focus will be on helping people and businesses to get through this in order for our communities to return to normalcy. What existing social service programs can be expanded to support people in the aftermath of this crisis? We also apply for reimbursement from the federal government through the disaster cost recovery process. In coordination with grants personnel we fill out the forms needed to account for all the overtime and ‘emergency protective measures’ that we expended during the response so that our local jurisdictions can recoup some of what was spent in this already very expensive disaster.
How Can You Help?
Now that you have a better understanding of what emergency managers are doing during this pandemic, you may be thinking what can I do to support the mission? Here are three ways…
Keep Emergency Supplies: What I’m hoping will be a major takeaway for the general public is to keep a disaster preparedness kit–including food and toilet paper!–ready for future disasters. We saw how everyone made a run on the stores and the negative impacts that had. Make sure you’ve got some emergency food and water already stored up. We were lucky no major supply chain impacts (besides some disruptions to PPE) have occurred in this disaster, but the next one may cause major physical damage that will disrupt supply lines. Take this as a lesson to have what you need to survive on hand before it happens.
Know How to Stay Informed: We hope you are more dialed into the emergency channels now–hopefully you’ve signed up for emergency alerts in your local jurisdiction and/or followed them on Twitter and other social media. This is a great way to stay informed. The COVID response is somewhat slow moving compared to other disasters, so it’s a good idea to continue to follow these outlets closely in future emergencies.
Advocate for Emergency Planning: And finally if you’re ever in a position where you can speak up about the importance of funding emergency management, please do! We are the ones working behind the scene to make improvements to the plans, processes, and systems so that we can respond swiftly to the next disaster. Give us a shout out to your executive management or let your local representative know!
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?
Today we watch the outbreak known as COVID-19 continue to grow with ferocity, spurring emergency proclamations from more than half of the United States. The number of Emergency Operations Centers active in California softly escalates to what is likely an all-time high since my career in emergency management began. The scale of impacts the COVID-19 virus will have on our society remains to be seen, yet there are already some salient lessons that can be gleaned from this experience. These are my thoughts so far as my world is slowly consumed by the first pandemic of my emergency management career.
Social Distancing, Telework and Disproportionate Impacts
The Governor of the State of California announced late last
night a statewide ban on public gatherings and more and more agencies are
implementing telework policies that allow employees to work from home.
Universities throughout the nation are moving toward online classes and almost
all conferences are being canceled / postponed to a later date. Major music
festivals such as Coachella and major sports such as the NBA are being
suspended. The impacts of COVID-19 are widespread. I commend the decisions in
most of these cases to minimize the spread of disease, especially the move of
computer work to an online environment. I have always been a proponent of
telework, even in a blue skies environment, particularly after becoming a
mother. So many people work in industries that are almost entirely computer
based and don’t actually require in person interactions at all. So why do we
still get in our cars everyday and drive to an office, making traffic just a
little bit worse? I think that the widespread usage of telework in response to
COVID-19 may enlighten agencies that telework can be a feasible option that
actually increases productivity and boosts employee morale (and people will see
how much this helps traffic in urban areas!). Especially as a breastfeeding
mother, the ability to directly nurse throughout the day would actually
increase my working hours as pumping, washing bottles, and properly storing and
rationing breastmilk is significantly more time consuming than nursing.
Today, anyone who can definitely should try to complete
their work in a place of relative isolation. Those of us who are young and
relatively healthy may not see this as imperative, but if it slows the spread
of this disease that could be fatal to our elderly families and immune
comprised peers (including pregnant women!) then it is certainly worth it. I
believe we will find that many of the in person meetings we previously held may
have been a drain on resources and will be shorter and more efficient if
conducted in an online environment—either through video conferencing, phone
calls, or email exchanges.
However, the move toward online work will inevitably leave behind many hourly workers who typically earn lower wages than their salaried office counterparts. Even though the disease does not discriminate based on wealth and fame, as we have already seen with Tom Hanks, politicians, and NBA players being impacted, exposure will almost certainly be disproportionate. In line with so many other disasters, this outbreak will impact socially vulnerable groups, particularly low income populations who already struggle day to day. These are the folks who most often work in customer service roles at gas stations, grocery stores, as hotel maids, as servers in restaurants. Often they don’t have paid sick leave, and shifts may even be canceled due to event cancelations as many aren’t represented by unions to guarantee a set number of hours. These are the people we need to consider and support as a community to ensure that they feel financially secure enough to stay home if they are sick and feel able to care for family members who may be sick. I am fully supportive of extending government paid sick leave for these purposes. We need to think through how we can best protect these workers and how we can sustain these functions with as little human exposure as necessary. I think we need to be innovative now and rise to the challenge of public health to protect all citizens not just those privileged enough to be able to work from home.
Health is Precious
With my daughter starting day care recently and immediately being stricken with a tough cold that had her home for a week and the anxiety of a recent personal health scare, the subject of health was already at the forefront of my thoughts. But now that COVID-19 has so rampantly run through our society, we need to rethink health as a priority. Every day, healthy people take for granted their ability to breathe, to walk, to eat without pain or difficulty. But this status can change rapidly at any moment, especially with such a highly contagious disease that is now so prominent worldwide. This is another way that COVID-19 will have disproportionate impacts, in this case on those who are already challenged by underlying medical issues. We need to take actions to boost our health and our immune systems and to actively be thankful when are well. Far too many of us only think of and wish for health when we are already sick. Instead, I challenge you to be mindfully thankful for your health every day—take pride in heathy choices that you make, eat your veggies, go on that walk, do that yoga, drink that water, EmergenC and green tea! Wash your hands, stay home if you can and remember that if we can slow the spread of this disease we can diminish the immediate need for finite resources such as hospital beds and ventilators, giving older people and those with compromised immune systems the best chance to fight this illness.
Technology and the Culmination of Couch Culture
I just recently returned to work after a 7 month maternity leave, some of which I didn’t have a personal vehicle. I am well practiced at social isolation and one of the major factors that makes me feel empowered to stay home is technology. Particularly the plethora of readily available delivery services—I am a regular user of Amazon Prime, Uber Eats and Vons grocery delivery. All of these were not available with the speed and precision just 5 years ago and are still not as accessible in many rural parts of the country. These technologies are a very powerful weapon in the fight against COVID-19 and I think we should make ready use of them. There is no need to make a rush on Costco or Walmart when you can have the essentials brought to your door step. I am aware that there are humans involved in these logistical processes, but I guarantee there are far fewer total opportunities for exposure in the quick interaction of the exchange at the doorstep then there are if you went to a crowded store or restaurant and spent an hour there. As technology progresses, it’s possible to envision a future where we could utilize drones and other automated technologies such as autonomous vehicles rather than Ubers to further mitigate the spread of this biological threat. It goes without saying that the Internet, smart phones, and tools such as Zoom and Go To Meeting are huge technological enablers in the work from home revolution. I know that loss of some hourly jobs is inevitable as we lean more heavily on technology, but I believe there will be more opportunities for creative, strategic employment for the next generation who, like my infant daughter, are practically born with a knack for technology. And isn’t this the perfect culmination of the ‘couch culture’ that we have been cultivating for years?? This generation of 20 somethings goes out far less than prior generations, and who can blame them with so many movies, shows, tasty foods, and even alcohol available with a few swipes of the smart phone? We have already been training for social isolation, now it’s game day.
These are my immediate musings on COVID-19, as I enter a week long period as the Emergency Management Duty Officer for eleven counties in Southern California. In the first nine hours of my shift I have received ELEVEN proclamations of local emergencies for cities and counties in CA. Wish me luck as I attempt to stay on top of this dynamic situation, and feel free to share the thoughts this pandemic is triggering for you.
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.