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The Cost of My Cancer in Hawaii
About the Author
Cora SpearmanCora Spearman-Chang is the CEO, president and designer of Coradorables, which can be found at www.coradorables.com.
When my grandma was alive, I loved her country, quirky but very honest anecdotes. Her storytelling influenced my own in some ways, although my biting sense of humor is all my own.
She used to say, “Everything has a cost, baby girl, everything.” When I grew up, her words rang even more true.
A lot of things involve paying a price, whether it is the cost of living in “paradise,” being in love, being happy and honest; the bill eventually comes due.
My grandma died of cancer in 2009. Her final days taught me something, as well. As she was dying, I learned that cancer isn’t free. Unfortunately, I got that last lesson a second time.
Let me explain. Toward the end of 2006, my fiancé and I were planning for some big things. I had just turned 29, we were preparing to open a luxury boutique retail store on Ala Moana Boulevard and we were about to get married. We were in the prime of our lives and things were good.
Then we found a small pea-sized bump inside my jaw. CT & MRI scans showed there was a lump that looked to be the size of a baseball. It was actually the size of a papaya and — yes, it gets worse — it was wrapped intricately around the base of my skull and along my jaw line. The tumor was eating away at the bone muscle and tissue in my head, and was edging toward my brain.
My inner voice, in a bout of gallows’ humor, said: “Leave it to my stupid cancer to be the overachiever.”
The Future Delayed
I immediately needed surgery. We halted construction on our store, put off the opening date and started paying for the delays. We had signed a five-year lease at Ward Warehouse on a 2,500-square-foot space that we were building out, so we were sort of stuck.
My extreme medical experience was different in Hawaii because I live on an island with a small population in the middle of the Pacific Ocean. Serious medical problems are expensive across America, but there are fewer medical resources available here for rare cases like mine, which meant a seemingly endless stream of additional costs.
The tumor, it turned out, was not cancerous, just really mean. The first surgery lasted 21 hours, which my doctors at Queens Medical Center said was the longest on record at the time. My face was deformed, but I was alive, with a lot to live for — and that was all that seemed to matter.
On Feb. 3, 2007, we finally opened our store. We started selling high brow labels like Tokidoki, Jedidiah, Maribelle chocolates & Riedel, and launched as-yet unknown brands in Hawaii. We started making good money, which helped, but it wasn’t enough. People might wonder what “enough” means in Hawaii, given prices, but I’m talking mostly about the medical bills.
And then there was the wedding. The Chinese side of my husband’s family knew we needed all the luck we could get. They suggested an auspicious date for our wedding: Aug. 8, 2008 — AKA 08/08/08. My husband and I liked the recurring infinity symbols in the numbers; we think of our love as infinite, like our faith. We had no idea how much both would be tested.
After the successful surgery and the store opening, we had reasons to celebrate. We got married at the Wynn Hotel in Las Vegas. We were once again young entrepreneurs, back on the path to success. We could afford to splurge.
In hindsight, it was a little surreal. At the private pool outside our room, there were computer nerds working on their laptops. They were young hotshot entrepreneurs with names like Andre, Dustin and Mark Zuckerberg. Yes, that Mark Zuckerberg.
Facebook? I was all like, “Yeah, cool, I have an account. I haven’t really used it yet.” Maybe they knew they were on the verge of taking over the world. They laughed.
Soon enough, I was crying.
As my husband and I got off the plane back in Hawaii, the cell phone rang. It was our surprisingly irate landlord. There were two problems. Unbeknownst to us, a friend who was house-sitting at our place had accidentally flooded our apartment, and our neighbors’ place.
This led our landlord to discover that we had two dogs, Daisy and Gizmo. We were great tenants, who swallowed every annual rent increase, but we were violating the no-pets policy. You could say we were deceptive, but the truth is — as many pet owners in Hawaii know — few landlords will rent to people with a dog, let alone two.
We had been good, loyal, law-abiding, non-smoking, on-time-rent-paying tenants for five years, but boom: We had to find a new place to live. The honeymoon felt far off.
Soon it felt even further away. The medical system in Hawaii decided it was no longer able to treat me and my still-active tumor. First my husband and I were evicted from our home, then my tumor got evicted from the islands.
Look, I wasn’t ready for any of this; no one is ready for cancer.
I was referred to a specialist on the mainland because no one could treat the tumor here. Having a rare cancer in Hawaii often means people need to seek treatment elsewhere. I couldn’t drive, catch cheap flights or a train there — like I might have been able to if I lived on the mainland.
And then there were the costs of travel and places to stay on the mainland; they were almost entirely on me, despite my pretty good health insurance. I was able to obtain some lodging at the American Cancer Society’s Hope Lodge, which provides housing and transportation to and from treatment for out-of-state cancer patients in parts of the mainland.
There is currently no Hope Lodge in Honolulu for cancer patients from the outer islands, so they often find it less expensive to seek care on the mainland than in Honolulu where lodging is so pricey. These are cancer-related costs that are pretty unique to residents of Hawaii.
Still, I figured, ‘Hey, I sell luxury items, spend on great hotels and meals, and I have the Bentley of tumors, so let’s go for the best of the best.’ I called John Hopkins Hospital in Baltimore.
I called their concierge services, which I later learned is a sort of hotline reserved for presidents, sheiks and the like. I spoke with a lovely lady named Robin who never let on that I had called the wrong number. I swear I must have been the most broke person to ever call that line because by then, we didn’t have much. But Robin, who used to live in Hawaii, connected me with the best of the best. (Robin said she left the islands, yes, because it was too expensive.)
From Hawaii to John Hopkins and Back Again
At John Hopkins I went through another surgery. This time it was 16 hours. Fortunately, they extracted another tumor. Unfortunately, it was cancerous.
In fact, they diagnosed me with such a rare cancer that even John Hopkins hadn’t seen it before. I became their case study.
The cost of living in Hawaii is already, obviously, sort of crazy to most locals. For me, there were some additional factors. I was paying rent on the 2,500 square-foot store and on our apartment in downtown Honolulu.
The surgeries put more than a small kink in my ability to work and earn an income. We took out bank loans and cashed out years of annuities and our life savings, which included tapping into our 401K.
But in 2009, due to my absences, we had to close our store. The retail landlords allowed us to break the lease, due to my health problems, by paying a penalty charge.
I was living the high life, hanging out with the glamorous ones because we worked hard and could afford to. We never lived beyond our means and we had even saved for rainy days — we just weren’t prepared for the length of the storm.
I traveled back and forth, over and over again to the East Coast. Initially it was for radiation treatments, then for follow-up surgeries and care. Since I needed a place to stay in Baltimore, we were paying many of the costs of two households simultaneously, and we were suddenly down to just one steady income. My husband was working in Hawaii, and living in our new rental here. I was often away for treatments and staying with family and friends on the mainland, and later at The Hope Lodge in Maryland.
So, to recap: Within a year of our wedding, we had to move into a new place, spend a lot of time apart and I was battling cancer.
And the cost of the cancer was rising. Our airfare, hotel and car rental bills alone were staggering. Soon we were — no surprise — filing for bankruptcy.
I had gone to John Hopkins expecting one surgery, recovery and then a return home. But in 2012 I had four major operations in a four-month period in response to the residual effects of my cancer.
Speaking of those effects, the right side of my face, at one point, was a gaping open hole, from the middle of my ear to my chin. In that area, there was no skin, bone, dead tissue or blood supply. I had to be “reconstructed” physically (as I already had been spiritually and mentally). My bank account had flat-lined, but I found strength I didn’t know I had.
On Oct. 10, 2010 — which is 10/10/10 for people who are paying attention — I gave birth to our daughter Izzabelle who has been the inspiration for me to rebuild our lives.
In 2012 the doctors cut my scapula to reconstruct my face, which suffered from the after-effects of radiation to my head. Unfortunately, and I really mean that, the scapula reconstruction failed. The blood supply did not survive even after days of leech therapy and vacuum seals on my head.
On Easter Sunday that same year, doctors cut into my forearm bone, muscle and tissue to use as fodder to reconstruct my face. That surgery failed too. Since the bone, muscle and tissue reconstruction did not have an active blood supply, none of the surgeries took.
As a final resort they did a pectorals flap where they severed my right breast and did a partial mastectomy, and stretched my breast muscle, tissue and the veins up to my face. I recovered at the home of a stranger, my doctor’s nurse, who cared for me until I could get back home to my husband and child.
I finally settled back home in Hawaii to a completely changed life, and to a very different relationship with the cost of living.
For one, 17 months ago, we had another daughter, Zoe.
The Real Cost and What We Got
Look, I wasn’t ready for any of this; no one is ready for cancer. I was living the high life, hanging out with the glamorous ones because we worked hard and could afford to. We never lived beyond our means and we had even saved for rainy days — we just weren’t prepared for the length of the storm.
Without the surgeries, we could have weathered the unexpected eviction, the lavish wedding and building out the $250,000 store (not including the luxury inventory), but not the cancer.
We no longer have any savings or a safety net. We live paycheck to paycheck; my husband, thankfully, still has his job and I am trying to build a business again. This time, I am selling Coradorables, Hawaii’s top affordable luxury brand for children. They were inspired by the births and personalities of my two girls.
My health has improved a lot and now I’m living a newer down-scaled version of the dream. We never thought it would be possible to start a family after the surgeries and the demise of our finances. Sometimes you have to dive in. Today, we are weak monetarily, but we are rich in spirit and love.
But enough of that mushy stuff. The next goal is to rebuild financially. We want to get beyond supporting ourselves. We want to thrive — and do it here in Hawaii. And that’s where things have to get practical.
These experiences changed the way I look at the cost of things. Yeah, “discount” $5.49 gallons of milk are crazy, and this momma has had to give up her shoe habit, but whatever. I’m doing my best to rise from the ashes. I like to think that if I can kick my cancer’s ass, then I can probably handle Hawaii’s high prices.
I try not to worry about any new unexpected medical costs.
Grandma always said, “If you are going to worry, then don’t pray, and if you’re going to pray, then don’t worry.” I think of her words when my husband and I wonder how we will cover the costs of bringing up our little ones on Oahu.
We’ve been the beneficiaries of a lot of unexpected support. For 15 years, I shopped at farmers markets and patronized the same family of local farmers. In recent years, they have been generous with me, my growing family and our limited budget.
I try not to fret about the high price of childcare and tuition and my children’s basic extracurricular activities, like birthday parties, but as a parent we all fret about these things.
These days, I am a momma on a budget who has learned to make a dollar holler. Forget the posh health club, we try to stay fit at the YMCA.
Now that the money is gone, I’ve come to understand that it was never the point. Often when I go outside in Hawaii the sun will be shining even as it rains. My grandma used to call this phenomena “the devil beating his wife.”
Now when I see the sun shining through the rain, as I did today, I giggle mischievously. The storm is finally passing and neither the cost of living in Hawaii, nor cancer will dampen my spirit.
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