Category: Blog (Page 2 of 4)

Photo by Martha Dominguez de Gouveia on Unsplash

Breaking Up With My Oncologist

May 3, 2020 / JNovak19

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.

2016 Presidential candidate Bobby Jindal, US House of Representatives photo

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.

At the State Operations Center in August 2017.

Three Years Working for a State Emergency Management Agency: What I’ve Learned

April 22, 2020 / JNovak19

Last week amidst the continued frenzy of the COVID-19 response, I hit a big milestone: my three year anniversary working for the California Governor’s Office of Emergency Services (CalOES). This is a milestone I’ve come close to at a couple different jobs but have never surpassed. Prior to this position all of my experience comes from the local and campus level (and a touch of private & NGO sectors). When I set out on this journey three years ago, I wasn’t quite sure what it would bring. I was hoping to gain response experience (big check) and gain a broader understanding of emergency management functions over multiple jurisdictions (check). Today I’m reflecting on what the major lessons and takeaways have been thus far.

The Heartbeat of Incident Response

The past three years have been some of the very busiest response years in the state’s history. My first 6 months were eerily quiet, but ever since then we haven’t stopped engaging in either response or recovery. We saw some of the state’s largest wildfires and I was directly involved in response and recovery for the Thomas Fire and the Woolsey Fire in Ventura County. I also responded to the Borderline shooting in 2018 and now I’m embedded in a pandemic response. Our agency responded to the earthquakes in Trona / Ridgecrest last summer too while I was out on maternity leave.

While there are many detailed technical lessons I’ve learned, I would say the important big picture take away from all this experience is a better understanding of the battle rhythm of these incidents, particularly wildfires since there have been so many. I’m no stranger to the flurry of information, the whirlwind adrenaline and anxiety of a wildfire sparking during Santa Ana winds and the lifesaving push for evacuations. I have endured the weeks long EOC activations and felt the burn out from both responders and evacuated residents. I have navigated the turn from a response toward a recovery and rebuilding effort. I have settled in for the long haul and partnered up with FEMA for major disaster recovery operations and the establishment of long term recovery groups. Each phase comes with a different pace, a different flavor and different prioritized information needs.

Responsiveness for Relationship Building

It’s been said time and time again, so I won’t take time to explain that relationships are key in emergency management. But I will share one strategy to build good relationships that I have discovered during my time with CalOES: Responsiveness. It can certainly be difficult to practice, especially when we are all so busy right now with this response or even just in the normal day to day managing our own programs. It can be tempting to only reply quickly to the most time sensitive emails, or to the ones that will impact you the most directly (i.e. the ones from the boss). But, I have really tried to pride myself on being responsive to inquiries from colleagues both in and outside of my organization and I have found it to pay dividends.

My role is a little bit tricky because while as a regional liaison I am the face of the organization to many of my EM colleagues in SoCal, I also work in a field office and am not directly embedded within all the various state programming in Sacramento. Accordingly I get a lot of questions thrown my way and I often don’t know the answers. At first I felt embarrassed about this and it was tempting to just flag an email and let it sit. No one in my chain of command would ever know if I just didn’t field the question. Instead, I have practiced replying quickly to the person–it lets them know that I care about their question or concern, that I’m here for them and that I will try to advocate for them and get their question answered as quickly as I can. Then I try to dig up answers. If I do know the answer, I try to reply right away even from my phone while I’m in the field instead of waiting to get back to my computer the next day. People have really appreciated this “customer service” type of strategy, and I believe that relationships are strengthened significantly when we engage in these small exchanges of information and correspondence.

The Importance of Teams

The majority of Emergency Management jobs are one person shops that do not come with a dedicated team. One of the things that I’ve enjoyed the most about working at the state level is that I am a part of a massive extended team and a close knit team here in the Southern Region. Throughout the years I’ve seen our team step up to support each other through the good times and the bad and I’m so happy to work with a great group of folks. When I needed to take time off to have a baby last year, I wasn’t worried at all because I knew I was leaving my projects in capable hands and that the team would be able to backfill me. It’s one of the perks I treasure the most.

Just because your position doesn’t come with a built in team, doesn’t mean that you can’t work to build one. Most of us manage EOC’s and that can be a great place to start. You may not be able to groom anyone on your EOC team to fall in love with EM quite as much as you have, but you can at least work to get one or two good EOC coordinator backups or train up a Planning or Sit Stat Unit to alleviate some of the stress from an incident falling 100% on your shoulders. During my time as the EM for Cal State Northridge, I worked to build a ‘preparedness coalition’ that became my interdepartmental team. I held regular meetings and got them jazzed about some of the fun preparedness events I was planning. My enthusiasm and angle of making it enjoyable got a couple of them hooked and even scored one of them a trip to the White House with me to accept a FEMA Individual & Community Preparedness Award for our efforts. It might not be the easiest or most obvious solution but I think that operating as part of a team is extremely important for emergency managers.

Balance

Working for the state, I feel like we constantly have to work toward attaining an appropriate balance. Mainly between providing the leadership that is sought from our large, statewide agency and respecting the expertise and unparalleled local knowledge of our Southern California emergency managers. We have to find the sweet spot between stringent mandates and hands off silence, often opting for issuing a kind of ‘guidance’ on hot topic issues. However, sometimes our initiatives are tied to local eligibility for state funding and this is when we can quickly fall from favor if our guidelines are too demanding or not so feasible. During my 3 year tenure I have heard both opinions: “the state should be doing more,” and “the state keeps pushing things on us and asking too many questions.”

One niche that I think we can fill to maintain some balance is by identifying and creating opportunities to share best practices. Because I work with eleven counties in my role, I am uniquely positioned to see and hear about different programs and processes that have been successful in different jurisdictions. I see it as an excellent utilization of our position to be able to make others aware of these best practices and to create forums for this type of information sharing. While I haven’t really been able to create brand new initiatives, I have tried my best to bring these best practices into some of the forums I do have influence over, such as our quarterly mutual aid committee meetings and the recent workshops for our catastrophic earthquake plan. I would love to work to expand these efforts in the future and continue to provide that mechanism for sharing.

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It’s been a great ride and I’ve really enjoyed the journey so far. Although sometimes I miss having my own program and a more hands on role, I wouldn’t trade these past three years for anything. What kind of lessons do you think are important to share from your level with EM’s from other types of jurisdictions?

Emergency Managers: Who are they and how are they helping with COVID-19?

April 3, 2020 / JNovak19

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.

Coordinating Resources

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

Monitoring Continuity

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!

Scarlett's ready to survive this pandemic.

Navigating the Pandemic as a New Parent

March 27, 2020 / JNovak19

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 Protector

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.

Playing with her flash cards during the pandemic.

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.

The Student

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.

Surviving Cancer and the Pandemic of 2020

March 27, 2020 / JNovak19

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.

Endurance

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?

Thermometers are being used for medical screenings in some EOC's. Photo by Kelly Sikkema on Unsplash

How COVID-19 will change Emergency Management Forever

March 23, 2020 / JNovak19

This disaster is nowhere near over, in fact I think things will continue to escalate in the United States for weeks. Yet the global pandemic of 2020, COVID-19, has already changed the field of emergency management forever.

Depicts how small a person is in comparison to the Grand Canyon. — Photo by David Mullins on Unsplash

Scale

The word I keep finding myself using is unprecedented. I know we’ve said that before, to the devastation of the Camp Fire in 2018, the colossal losses in the Carribean when two category five hurricanes hit within 10 days, the drain on resources in Ventura County when a mass shooting occurred within hours of two major wildfires breaking out, the destruction of the Tohoku earthquake and pan-Pacific tsunami…all of these were catastrophic, for the jurisdictions they impacted. But none of these were global disasters. They were all regional. In California, we are always planning for the Big One, we just recently put a ton of time and effort into developing a Catastrophic Earthquake Plan for Southern California. It was always seen as this extreme scenario that would truly test our limits. But even in that seemingly extreme scenario there would be outside resources available, we could activate mutual aid systems and rely on our neighboring states, or at least the East Coast to alleviate some of our burden. If people wanted to escape the devastated region, they could migrate to other parts of the country as we saw with the diaspora following Hurricane Katrina.

The pandemic is different. You cannot escape it, because you don’t know exactly where it is. You have to assume that it is literally everywhere in the world. Every jurisdiction is impacted. Everyone is proclaiming an emergency and everyone is activating their EOC (as of this morning there were 106 EOC’s activated in Southern California). The scale is just enormous, and I don’t think that it’s something that the state or the federal government ever really thought through or anticipated to the degree that we are now impacted. As it turns out when everyone everywhere is impacted a lot of the assumptions we have always made about emergency management change. How can the federal government possibly reimburse every jurisdiction? How can we make and distribute tens of millions of masks, gloves and other supplies everywhere simultaneously? Can FEMA and the American Red Cross be everywhere at once? Neighbors can’t help neighbors if everyone is impacted and if getting too close to each other puts our lives at risk. As we move forward from COVID-19 I anticipate a new subset of this field focused solely on global disasters, and not in the distant mythical kind of approach that we always used when talking about ‘megadisasters’ before.

Response Experience

The pandemic will be a great equalizer in a way because now every emergency manager who was working in 2020 has response experience. Obviously everyone’s role is a little different right now, but in some way literally all of us are having to respond or adapt our planning because of COVID-19. There are many emergency managers for small jurisdictions who might have NEVER had to activate their EOC in the twenty years they were working there. There are cities I have never even heard of in Southern California that now have activated EOCs. Some of us that activate regularly are getting a whole new kind of experience–one where there are real resource requests that need to be filled ASAP and LOTS of them. There are true shortages of supplies in this incident and we are all using that system for real now, not just talking about it in an exercise scenario. No matter what type of jurisdiction or what your role is, if you are an emergency manager in 2020 you have now earned your pandemic response badge. This response will be the topic of discussion and dissection for many years to come, everyone will have a story to tell and every jurisdiction is learning how to better operate their EOC’s after this incident.

Safety in the EOC

In most responses that I’ve been a part of, the Safety Officer position in the EOC typically became an ‘other duty as assigned’ because there was just not enough to do. This position makes a lot of sense in the field, at the ICP for a shooting or a wildfire, but EOC’s are pretty inherently safe working environments. Most of them are secured facilities that are built to withstand earthquakes, hurricanes, car bombs, etc. When non-EM friends see my posts about responding to fires, they typically say ‘stay safe’ without realizing that when I respond to an EOC I’m responding to an office like environment. I’ve joked many times that the biggest hazard for me is the 10 pounds I’ll inevitably gain from sitting too much and snacking on EOC food all day. But in this incident, all of the sudden our jobs did become dangerous. The Safety Officer is now critical in protecting EOC staff from spreading the virus–implementing medical screenings, keeping a strict sanitation schedule and ensuring work spaces are 6 feet apart are enough to keep any one person busy all day. Things we normally don’t think about like sharing a common pen with the sign in sheet, or using a common key pad to access a facility…all of these practices have now become hazardous.

It is also distressing in a way that many of us aren’t used to. If you came into this field having studied it and are passionate about operating at a coordination level separate from the field operations, this is probably the first time your job has truly been dangerous. We are not first responders, like firefighters and police officers. We aren’t used to putting our lives and our family’s safety on the line by going to work and now many of us are. I know several EOC’s that don’t have the space to practice social distancing–cramming 50-100 bodies into a small room and spending 12+ hours there. In the future, this is going to become a huge consideration for how we can better protect ourselves. I also think some of us may have a lot to chew on mentally–myself included–about whether we want to work in a job that can be so dangerous.

Remote EOC’s

The discussion of safety in the EOC leads me to my next point. Most of us aren’t well equipped enough in our processes and procedures to take our operations virtual at this point. Some of our essential functions are still done with pen and paper, or with T-cards, or with hard copy 214’s, or with a desktop computer that has to be hooked up to a certain server. Many are scrambling right now to be able to execute the essential functions of their EOC’s remotely so as to preserve the safety of their critical staff. The tools are out there and some jurisdictions are extremely successful at this. Your planning meetings can be conducted over web conferencing, even press conferences can be as we are seeing in California. Email and phone allow you to ask questions of other sections. Virtual environments like slack that are conducive to group chats and discussion threads are extremely useful to engage several people working on the same problems. I think many of us have drastically underutilized WebEOC, VEOCI, and other EOC management software. It hasn’t been trained and integrated enough into our operation to be able to function at its full capability. I think this is a huge lesson learned from COVID-19. The ability to work remotely is crucial, and it is possible, we just need to practice and equip our responders to be able to do it comfortably. Pandemics aren’t the only disasters this can be good for, if roads are damaged in a major earthquake but communications are still up it might be a lot easier to get your EOC up and running virtually for the first operational period. This is the major way that I think this disaster will change the field.

California Gov. Gavin Newsom holds a conference on the COVID-19 conference on March 15, 2020. (Credit: KTXL)

Political Ubiquity

Now that every jurisdiction has been involved in such a major disaster response, all of our elected leaders are getting a crash course in disaster management. Whether they were engaged with EM before or not, they now undoubtedly have had to function in a crisis environment. More proclamations means that every city council and board of supervisors out there has had to draft and approve a resolution pertaining to an emergency. I bet it was the first time many of them had done it in decades. Mayors, governors, and even our President are giving press conferences on this disaster daily and having to learn good risk communication. They are learning a lot about continuity of government and just what services are essential. They are having to make some pretty big decisions that impact their constituents in huge ways–shelter in place orders? Closing down local businesses? These are not things that are easy to do and certainly won’t please all the voters. But as emergency managers I think that this is a win for us because I don’t think we’re going to have trouble convincing our bosses in the future why emergency management is important. For the next several years this disaster will be fresh in everyone’s memories on a scale we’ve never seen before. We are used to seeing news of distant disasters and being entranced for a couple weeks, sending donations and creating hashtags #anyplacestrong. But now that our lives are truly disrupted in a major way for an extended period, politicians and previously detached coworkers are going to care about our field.

More Funding?

That brings me to my last point, more funding. I have it with a question mark because in the immediate future I think a pretty big recession is inevitable, so I don’t think there is going to be much money to go around. However, I can tell you one thing. Emergency management programs are certainly not going to be the first on the chopping block as they historically have been in some jurisdictions. Executives will remember the plan, the program, the person they had to turn to in this dark time for guidance and they will not cut that program. I think that the long term fiscal impact on EM funding is going to be positive after COVID-19. I think there will be more emergency management positions created and hopefully more young folks interested in filling them. For once, everyone is going to see our value because this will be an incident that is not soon forgotten.

I am sure there will be many more lessons learned in the weeks to come of this prolonged disaster. But these are the initial ways in which I think our field will never be the same.

COVID-19 and Society

March 13, 2020 / JNovak19

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.

An Ode to Maternity Leave

January 30, 2020 / JNovak19

In the beginning of your life there were three: your father, you and me. We thrived for six wonderful weeks free from the hassle of commutes and the distractions of office work.

When dad returned to work, it was just you and me, I wasn’t quite sure how it would be. It hasn’t always been easy but it has always been marvelous. Although it surpasses the depth of words, I will try to paint for you a picture of the most special time in my life and the most precious memories that you have given me.

Early afternoon weekday walks through our neighborhood, you watch the seasons change slowly for the first time from your seat, catching glimpses of falling leaves, jack o’ lanterns, wreaths, then trees banished to the curbside.

As a sleepy newborn with closed eyes you raise your eyebrows and jut out your lower chin, seeking out my nipple.

When you awake from night’s slumber we partake in our morning routine, opening blinds and bidding good morning to each room and your reflection in the mirror.

I watch the wonder in your eyes when you feel your first rain and we hunker down, not leaving the warm walls of the house as the rain patters softly around us.

Your eyes droop closed while nursing, your cherub cheeks so still and perfect as your rhythmic suckling slows gently to a mere instinctual reflex and I let you sleep on my breast in the house’s midday silence while I read a mystery novel.

The smiles you elicit from strangers midweek at the grocery store while I show you where we find our food and fill the cart’s cupholder with a Starbucks treat.

I chart the shadows of the house at the tail end of summer, learning when they allow for blanket time in the backyard as you learn to lift your head steadily.

Unaware of the hour, we accidently mix with the backpack clad children walking to school while we are enroute to the local coffee shop, I daydream about how you’ll look at that age.

Errands that I used to drive to become excuses for exercise, another opportunity to show you the world through the vantage point of your stroller.

We watch the cars clear one side of the street for the weekly sweeping, and push past the sweeper driver and parking enforcement officer casually chatting on a crisp morning.

Unexpected cuddles transform my afternoon and I forgo my loosely made plans in favor of the soft warmth of your skin on mine as we lazily watch a Lifetime movie.

I retrieve my mixer and show you how to bake holiday goodies that we take to the neighbors who smile sweetly at you and your wild hair, strapped snuggly to my chest.

We hear tales of traffic on the morning news and I imagine its snarling storm around us while we are nestled comfortably in our little neighborhood bubble.

I let you carve the path of my agenda-free days: feed you on demand, snuggle you when you’re tired, and move through each room in the house to entertain you.

From the library’s alphabet carpet you smile shyly at the other babies with their nannies and look anxiously for me while perched on your tummy.

Monday morning at 9am we join the other littles for a swimming lesson in place of the staff meetings I once endured.

Always vigilant of your safety, I dial deeply into the neighborhood routines and anticipate each jogger and dog walker’s passage on our street.

The coming of the garbage truck is a weekly milestone, and we take note of when it comes and goes.

We follow the Amazon delivery van from house to house, you in your stroller—blissfully unaware of how many of your accessories came into our home that way.

We burrow so deeply into the house that we become familiar with microclimate that shifts diurnally and I adjust the layers of your clothes to your comfort.

You watch in fascination as the patterns of sunlight dance across the living room in late afternoon, I marvel at how they differ from season to season.

I bring you to the studio for your first yoga class and you roll across the shining wooden floors while I attempt my first sun salutation as a mother.

Your little hand grabs at my favorite ceramic mug as I sit leisurely sipping my morning coffee, smugly pleased at the retirement of the travel mug.

We indulge in the independence to feed on demand: you free from the confines of a clocked bottle and me liberated from the mediocrity of a boxed lunch.

I tell my friends they can come over anytime to meet you and I mean it, our schedule can be molded around theirs.

When you struggle with sleep overnight I am up to comfort without hesitation or complaint since the next day presents no hurried obligations or mental challenges.

We shoo away the neighborhood cats that come to play with a mouse in our backyard because they assume we are all away for the day.

You teach me a whole new meaning of prioritization, your beautiful smile is my day’s only true goal.

I make time for weekday phone conversations with friends who are all so excited to meet you.

The intimacy between us knows no bounds as I have been with you every day of your life, cherishing the nuances of your bowel movements, your naps and your meals.

We bask in the apricity of our little corner of the world and I wonder if you remember the sunflowers of summer that used to line these streets.

When we get a late start to our walk, we are joined by the cars returning one by one from the outside world as the empty driveways begin to fill.

Untethered from time’s obligations, I rock you to sleep in your clockless room, cherishing the soft stillness of your skin on mine, not knowing or caring how long it takes.

Our walking route shifts and meanders as the days grow shorter and I grow stronger, we add a jog up the hill to the river vista.

I read your favorite books so often that I have committed them to memory, adding new inflections to the stories as I please.

We attend your first music class, you make friends and learn Christmas music rhymes while mom and dad smile and sing to you proudly.

Laying on the couch, we FaceTime with grandma filling the hour between your afternoon nap and dinner preparations.

Our relationship is priceless, so deeply intimate that our bodies still merge as one for your feeding several times a day.

When strangers join us, you look around anxiously for me and give them a big sad lip, crying until you are in my arms again.

We take a field trip to Garden Grove to enjoy a picnic lunch in the park with Aunt Ellen.

I lounge in moments of calm and silence gazing at you lovingly through your baby monitor while you snooze peacefully in your crib—happy to rest but excited to see your smile again.

I am deeply familiar with the daily pattern of your eyes, from their wide early morning excitement to the drowsy fluttering droop after your evening bedtime story.

We walk to the wetlands daily where we monitor the water level and marvel at the colony of ducks that shifts through the seasons.

You gave me this new and wonderous life as mama and transformed my perception of the life of a stay-at-home mom from skeptical to envious.

I will forever be thankful for the luxury of reflecting on this time in months and seasons rather than days and weeks.

I will never forget the beauty and bliss of these minute moments and the intimacy we’ve shared during your beautiful first six months of life.

Photo credit: Zeny Rosalina via Unsplash

Entering a new Decade as a Cancer Survivor

January 6, 2020 / JNovak19

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.

Photo credit: Damiano Baschier via Unsplash

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.

Photo credit: Terry McCombs via Unsplash

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.

My daughter Scarlett turned 5 months old on New Years Eve.

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.

Category: Blog (Page 2 of 4)

Breaking Up With My Oncologist

Three Years Working for a State Emergency Management Agency: What I’ve Learned

The Heartbeat of Incident Response

Responsiveness for Relationship Building

The Importance of Teams

Balance

Emergency Managers: Who are they and how are they helping with COVID-19?

Navigating the Pandemic as a New Parent

Surviving Cancer and the Pandemic of 2020

How COVID-19 will change Emergency Management Forever

COVID-19 and Society

An Ode to Maternity Leave

Entering a new Decade as a Cancer Survivor

Jenny Novak

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The Heartbeat of Incident Response

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Jenny Novak

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