Jenny Novak Publications

Emergency Manager | Speaker | Writer

Tag: cancer

Breaking Up With My Oncologist

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.

Photo by Kelly Sikkema on Unsplash

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. 

Newborn Scarlett G at Kaiser South Bay.

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.

Photo by Annie Spratt on Unsplash

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.

Photo by Micheile Henderson on Unsplash

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.

Surviving Cancer and the Pandemic of 2020

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. 

Photo by Rúben Marques on Unsplash

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.

Photo by Rebecca Prest on Unsplash

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.

Photo by Sharon McCutcheon on Unsplash

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.

Photo by Noah Buscher on Unsplash

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? 

Entering a new Decade as a Cancer Survivor

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.

Photo credit: David Ballew via Unsplash

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.

My goals 2020-2030.

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.

Pregnancy as a Cancer Survivor

As I approach the due date of my first child this weekend, I am reflecting on how this pregnancy journey has been shaped by my experience as a cancer survivor. For many young moms, labor and delivery will be their first / most serious experience with the medical system, and possibly their first overnight stay at a hospital. And many cancer survivors are older, already mothers and not trying to conceive while in recovery. As someone who was diagnosed with cancer (a very rare clear cell sarcoma within the colon) at 26 years old, and becoming a mom afterward at 33 years old, I find myself in a unique position—with both benefits and drawbacks.

When I got the diagnosis in 2012, becoming a mother was one of the primary goals that I quickly realized I still wanted to accomplish with however much of my life that remained. I made a bucket list of sorts and having a child was right up at the top. Of course, to create the ideal environment to raise one would take years. I had not yet found my partner, my career was not yet well established and certainly living in a house with four roommates was not the best place to raise a child. It took time, and I’m forever grateful to have had these 7 years to get where I wanted to be; here, as I am about to experience the joy and journey of motherhood.

In the hospital recovering from cancer surgery
April 2012, recovering from cancer surgery with therapy dog Jackson at UCLA Hospital.

With the goal of ending on a positive note, I’ll begin by addressing downsides to going through pregnancy as a cancer survivor. The first is that you can’t go for your normally scheduled follow up scans. After primary courses of treatment such as chemotherapy, radiation, or surgery, cancer survivors are typically kept under surveillance for years through follow up imaging to ensure our bodies are still cancer free. Unfortunately, MRI’s / PET Scans and babies in utero don’t mix. Depending on the frequency your doctor is recommending, this can certainly throw a wrench into your follow up care plan since pregnancy is more than 9 months and many people are supposed to go multiple times per year. Skipping recommended scans can certainly make a survivor nervous because the fear of recurrence is omnipresent, very real—always there, just out of sight. Clear scans keep you reassured of your health and help you continue forward on your life track with reduced anxiety. I am very fortunate in that being 7 years out with no recurrences I have only been going annually for the past couple years. My oncologist actually approved an even longer gap for me to accommodate my pregnancy and recovery—waiting about a year and a half until Spring 2020. While it’s a little nerve-wracking to be unsure of what your body is up to for that length of time, at over 7 years I am feeling pretty good about this–perhaps I’ve graduated to the 18-month interval from the 12.

The second downside of approaching this as a cancer survivor is the heightened worry with all that can go wrong in pregnancy. There are a lot of tests, many different criteria for levels in your blood draws, blood pressure, your weight, protein or glucose in urine. I actually did experience elevated fear and paranoia that I know is a kind of PTSD from my cancer. At the beginning of my 2nd trimester, my liver enzymes (AST/ALT) mysteriously shot up and I had to go for several repeat blood tests, which continued to escalate to levels over 200. This can be a marker of liver damage or of Intrahepatic Cholestasis of Pregnancy or possibly preeclampsia. Trust me, Google will show you lots of different disorders this can be a foreboding symptom of.

I was referred to the high-risk doctor and a liver specialist. They even performed an ultrasound on my liver to check for any damages or suspicious lesions. Boy was that scary for me, it was the first time since my original diagnosis that I had been told something was abnormal and needed to be investigated. It was so tough to relax and think positively as the creeping, agonizing panic of something being wrong with my body began to sink in from the sidelines. When your body has psyched you out once already by throwing you a super-rare-cancer-at-26-years-old-wildcard you are constantly on your toes at any little sign that something isn’t right. Even after 7 years, I continue to be a bit of hypochondriac, but this was the first time that doctors were concerned too. In my case, my liver enzyme levels simply began dropping until they returned to normal levels. No explanation whatsoever. The body is still nature’s mysterious machine in a lot of ways. For as much as we seem to decipher about it there is so much more that we have yet to understand. But as a cancer survivor, it is difficult to trust your body to just be normal sometimes. You know all too well that just because you feel fine and you’re functioning perfectly well that doesn’t mean there isn’t something sinister at play in your cells.

22 weeks pregnant with cancer surgery scar on stomach
22 weeks pregnant, camping in Anza Borrego State Park.

I think the biggest benefit of approaching pregnancy as a cancer survivor is that I’m not afraid. The idea of labor and delivery isn’t really scary to me the way it is to some first-time moms. A lot of people are afraid of getting a C-section, afraid of the recovery, afraid of the scar, and fearful of infection. But having already gone through a major, exploratory, emergency surgery on my abdomen I’m not scared of the possibility of a C-section. It’s not my first choice for how I deliver my baby, but I have no anxieties about undergoing the procedure if it’s necessary for a safe delivery. The video we watched in LaMaze class talked about how they slice through the abdominal walls and the layers of fat and muscle, then pull it apart so the baby can come out. It made it sound kind of gory and I almost wonder if it’s designed to scare you—but 7 years ago that happened to me. It was even worse, a large vertical incision was made through all my layers and my intestines sliced open, a section removed, then stitched back together. They poked around at my other organs too since they didn’t know what they were dealing with at the time, hence the term ‘exploratory.’ That sounds a hell of a lot more intense than a small, measured, horizontal incision on the uterus. The recovery? Yeah it was no fun. But I made it, I was able to go on short, slow walks tethered to my IV pole within a couple of days. It took a couple weeks for me to be able to go on longer ones around my neighborhood, after the wound vacuum was removed. Yes, my wound did get infected. Due to the emergency nature of my surgery I couldn’t do a proper bowel cleanse / fast beforehand. So I had to wear the vacuum for a week after the infection was discovered, then do ‘wet-to-dry’ dressings and change them myself twice a day until it healed from the inside out. What are the odds of that happening with a C-section? Very low I’m sure. The Cesarean is such a controlled, well-practiced procedure. One in three births in the U.S. occurs through this method. Even the emergency ones are nothing in comparison to the major, complex surgery that I’ve already been through, recovered from and owe my life to.

In terms of vaginal delivery and the whole labor experience, I know many people are afraid of the pain, so many want to request an epidural immediately to spare themselves from horrible contractions. I am not so afraid of it, although it is the unknown so I’m also not opposed to the epidural as a tool for a difficult and prolonged labor. While it’s true that I have never experienced labor and probably nothing similar, I did experience prolonged pain and discomfort in my stomach for months before the surgery. The doctors told me that I must’ve had a high tolerance to pain to not have come in sooner. This gives me hope that I’ll be able to endure labor pains.

Am I afraid of the epidural? I’m a bit hesitant about it, since I’ve never had a needle in my spine before. I’m hoping not to get one, but again if it will help me relax to get through a prolonged labor I will. This is a routine procedure that I am confident the anesthesiologist is well-practiced in. I do have the benefit of knowing I’m not allergic to anesthesia, having undergone general anesthesia for my surgery.

I’m comfortable in hospitals. They’ve saved my life once before and got me on the road to full recovery. Needles, IV’s, and blood draws don’t scare me at all because I’ve gotten used to these medical tools through the sixteen MRIs / Pet Scans I’ve had for follow up care. None of these interventions bother me because I literally owe my life to the benefits that modern medicine can provide.

38 weeks pregnant on the couch with cancer surgery scar on stomach.
38 weeks pregnant with a big belly, resting my feet on the couch.

Most importantly, I think the cancer has prepared me for this experience in a positive way because I know I’m a survivor. Because I’ve gotten through something far more horrific and menacing than childbirth. I know that my body can recover, that I can heal and fight off infections. I know that I can take small quantities of necessary opioids for pain, I’ve felt the itching side effects, and I know that I can wean myself off them successfully. I have been through a much scarier, bigger battle than this and I am still standing strong.

I approach my first birth with confidence, with wisdom, with gratitude, and with excitement that this time when I go to the hospital it will be for something beautiful. This time, my body has been growing a human being, not a malignant neoplasm, and the birth of this baby will be spectacular and celebrated. I am experiencing a normal human condition—a womanly rite of passage that has given longevity to the humanity for generation. My body is meant to do this and this is one of my dreams.