The therapy dog who visited me during my one week stay at UCLA Ronald Reagan Hospital in 2012.
There was a day when I thought I might have only 45 minutes to live. That day was April 27, 2012, exactly ten years ago today.
Ten years. When I was 8 years old, the 10 years between me and my 18th birthday seemed like an eternity. Now that I am 36, ten years feels significant but not forever. I suspect that if I make it to 46, these next ten years will seem even shorter than any decade I have experienced yet.
Ten years ago today was the closest brush with death that I have had. Unwillingly, I was forced to face my own mortality. The presumed invincibility and long term outlook of my 20’s ended abruptly that day.
When I was rushed into emergency surgery, I didn’t know what was wrong with me and neither did the doctors. We only knew that my intestines were obstructed by an unknown mass and if I were to live, it had to come out immediately. I was told I would likely wake up with a colostomy bag and asked to sign a form acknowledging death as a risk of the surgery. I was all alone for most of the 45 minutes I had.
When I woke up from surgery, I was colostomy bag free but faced with the prospect of a long recovery and the lingering mystery of the origin of the mass. Later that week I learned that it was a malignant neoplasm–cancer–the exact type still unknown. I was told it was either a sarcoma or a melanoma, not a carcinoma which is by far the most common type (breast cancer, colon cancer, prostate cancer, lung cancer).
My tumor was unusual and had to be sent to UCLA’s tumor board for analysis. I had my very first PET scan that week. Before receiving the results I worried that my future was now limited. The questions were innumerable.
Would I survive the summer? Christmas felt like a long shot. What would life look like with a massive vertical wound that would someday become a scar on my belly? Would anyone ever want to date me again? Would employers want to take a chance on a young girl who might die from cancer soon? If my time was limited, what should I focus on?
My long term goals no longer mattered like they once did. How could I live a fulfilling life, not knowing if these weeks were the end of my life? I had always been a long term planner, taking actions with future me in mind, nevermind the present. Robbed of the certainty of my future, I was forced to make a monumental mindset shift.
After nearly a week of uncertainty and wearing a wound vacuum, I visited my assigned oncologist. He told me that the PET scan revealed no evidence of disease. This is the best news possible for cancer survivors, but it was hard for me to understand just how wonderful that was. I was, after all, newly inducted into the world of cancer and I still didn’t even know what kind I had had.
Eventually they determined it was clear cell sarcoma of the gastrointestinal tract. A research study conducted between 2004-2017 revealed only 53 cases of this cancer worldwide.
The statistics for clear cell sarcoma are grim. If you google it like I did, you will be faced with the phrase ‘poor prognosis.’ Five year survival is 56%; ten year is 33% and twenty year is 10%.
But now that I am in the one-third who makes it to this 10 year milestone my hope for old age is reignited. Yes, I need to remain vigilant. Especially because having radioactive glucose injected into my veins (procedure for PET scans) multiple times at a young age increases the odds for developing other cancers. But, now that I’m in the 10 year club there should only be a 23% chance that I perish before age 46. Much better than the 90% chance I once faced.
So today I celebrate this incredible milestone by indulging in the here and now. I took the day off work and filled it with activities that bring me immediate joy, writing is one of them.
Sunflowers are the symbol of sarcoma awareness. Photo by todd kent on Unsplash
Ten years has taught me so much and I have been incredibly fortunate, perhaps even blessed, to have such a magnificent quality of life. That is not always the case with cancer. Even those who survive 5 years are often undergoing treatments and battling relapses during that time.
I’ll be making a series of videos over the next month highlighting 10 perspective shifts that I have made since surviving cancer. I love to write about developing a resilient mindset, and those strategies are directly influenced by what I’ve learned as a cancer survivor. So, if you’d like, follow along on my YouTube channel.
I’ll also be raising money for the Sarcoma Foundation of America through the next month in hopes that my story can inspire newly diagnosed sarcoma patients and we can raise money for more research on these rare cancers that account for less than 1% of all cancers and mainly impact young adults. Check out my page on Raise Your Way to donate directly to my 10 year cancer free fund. My goal is to get 100 people to donate just $10. Of course, if you can donate more you are welcome to but $10 is all I ask. Thank you, everyone. Here’s to 10 more years!
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.
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.
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.
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.
Right now, you can be sure that everyone you know is going through an array of emotions associated with the pandemic crisis. Anxiety, fear, relief at being able to stay home, and hope that we will come through this stronger than ever. Now is a really great opportunity to connect with friends, acquaintances, and previous professional connections you may not have heard from in a while. Check in on each other, be vocal about how you are feeling. We need to lean on each other now and try to nurture our connections to get through this. When I was going through cancer, I was overwhelmed with the love that I felt from all corners of my life–both past and present. People I hadn’t spoken to in years reached out to make sure that I was doing ok and offer supportive words and virtual hugs. It really helped me a lot to know that so many people were in my corner and praying for me during a dark time. We can all do this for each other now, particularly those who might be more at risk for this or who are struggling without much support either from being laid off or being overwhelmed at home with both work and childcare. Community is a powerful tool and we can all do our part to leverage it now. Speak up, share your story, share how you are feeling. You can create a wave of positivity that will break down barriers in this quarantined world.
How are you reflecting on the current situation in comparison to past adversity you have survived? What strategies can you borrow from those times to get through this?
The 2010s were an incredible decade for me, full of the highest highs and lowest lows that I have yet experienced. Toward the beginning of the decade, in 2012, I underwent emergency surgery and was diagnosed with a rare form of cancer. It completely changed my outlook on life forever—although I had always been a long term planner, I was suddenly forced to hyperfocus on the now. There was a time in May of 2012, when I was not sure I could see a future for myself after the summer. I couldn’t even think of Christmas, let alone 2020. So as 2019 drew to a close I reflected on what it means to enter a new decade as a cancer survivor and to think about time in 10 year increments.
When I learned that I had cancer I was immediately thrust
into the parallel universe. Everything around me went on with its usual pace,
humming forward with the busy-ness of normal, healthy life. Business people had
deadlines, children had seasonal school activities, people were getting
engaged, and my friends made plans to go out drinking on weekends. My little
world was rocked, all of the sudden time skidded to a stop for me while life
went on without me. I had spent my young life always looking toward the future,
planning out and achieving my goals—landing my first job and moving out at 17, getting
married at 20, graduating college at 21, starting a PhD program at 22, and
checking the boxes off my life list. I was on the up and up, constantly moving—determined
to ascend the escalator of life, my eye always on the next milestone. All of
the sudden my escalator came to a screeching halt, while everyone around me
just kept on climbing. I had encountered some faulty machinery, and I had to
step off to see what was around me in the here and now.
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.
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.
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, 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 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.
