My Story: A Bone Cancer Survivor’s Search for Pain Relief

By Kristen Hernandez

The past three weeks have been the most challenging since my cancer diagnosis 20 years ago. Shortages of opioid pain medication have taken their toll, costing me weeks of productivity, mental and physical anguish, and a negative bank account.

When I was 25, I had a different life -- a career as a corporate travel consultant for RCA Records in New York City. I clawed my way out the ghettos of the Bronx and into corporate America, and purchased my first home in the suburbs of Long Island.

But everything changed when I was diagnosed with an insidious and rare form of bone cancer called Chordoma. It’s a literal one-in-a-million disease, with just one in every million individuals diagnosed with it each year.

The type of Chordoma that chose me is extremely rare, due to the tumor’s location: it was housed inside the L3 vertebra of my lumbar spine. And it was extraordinarily painful.

KRISTEN HERNANDEZ

Because Chordoma doesn't respond to chemotherapy or radiation, surgery is the only treatment. To save my life, surgeons reconstructed my spine, replacing a vertebra with a titanium cage and filling it with bone graft from my hip.

They also replaced a spinal disc with two more titanium cages, adding 16 rods and 20 screws for reinforcement.

My spine today resembles a nightmarish ladder that Tim Burton might have created.

After eight reconstructive spinal surgeries, I was given a miraculous drug called OxyContin. Doctors did not think I’d ever walk again because they needed to sever the nerves to my legs so that they could remove the cancer-infected bone.

Because of OxyContin, I was able to take my first step and eventually walk. This was in 2005, at the beginning of the so-called opioid crisis.

Once I relocated to Florida, pain management doctors refused to prescribe OxyContin to me, fearing lawsuits and scrutiny from law enforcement. Regardless of how much I protested, I was dismissed as if I was the problem, instead of having a problem.

At the time, pill mills were everywhere in Florida. They were places where if you had cash, you could get any medication. It’s also why there’s a such stigma today against chronic pain sufferers.

Eventually, I found a legitimate pain management doctor in Fort Lauderdale. Instead of OxyContin, he changed my regimen to a fentanyl patch, along with oxycodone/acetaminophen tablets (Percocet) for breakthrough pain, essentially replacing one opioid with two. That was my pain management routine for the past twelve years, until recently.

When I went to a Walgreens pharmacy this past June, I was shocked to hear, “Sorry, oxycodone is on back order, and we have no idea if or when it’s coming back.”

Opioid Shortages

Shortages of oxcodone, hydrocodone and other opioids are increasing around the country. And there is zero advance notice from pharmacies about when a prescribed medication will be available. Patients like me who suffer from severe pain are forced to go through withdrawal until the pharmacy restocks.

It’s a nightmare to deal with. Pain patients are usually not prepared for the sudden halt in medical care. Even the smallest disruption can have devastating effects, such as loss of productivity, reduced quality of life, and a diminished social life. Even smiling takes an effort.

Patients are always the last to know when there’s a problem with a prescription. Like thousands of others, I made frantic phone calls to my doctor, who scrambled to find an alternative medication. Without consulting me, he wrote a script for hydrocodone/acetaminophen (Vicodin), a medication I had never taken before. That’s when my three-week nightmare began. Because I wasn’t prepared to handle the ineffectiveness of hydrocodone for bone pain, my condition quickly began to decline.

Each morning, the first sensation I get feels like someone dug their elbow into my lower back all night long. It’s so fierce, it takes my breath away. Then, when I stand and all the titanium in my spine settles, the nerves hum in my legs and a crawling sensation shoots up and down, vibrating constantly.

As the morning coffee brews, I get the “poke” sensation. Due to a 200-pound weight loss, there’s a rod that sticks out of my thoracic spine area that rubs up against everything -- the bed, couch, office chair, car seat, everything. It’s miserable because it’s there forever.

Hydrocodone/acetaminophen tablets seem to exacerbate those symptoms, causing my body to swell and tighten into a ball of pressure, while the pain intensified. My productivity stopped and the bills began to pile up. Working while experiencing severe spinal and bone pain is nearly impossible.

After a recent candid discussion with my pain management doctor, we formed a “Plan B.” We’re trying oxycodone without acetaminophen to see if that works better. Having a backup plan with an alternate list of medications is essential with the shortages and fear-based drug culture we’ve found ourselves dumped into.

Government regulators and health policies have failed the people who suffer the most in this country, who often live with medical conditions they cannot control, like cancer. They’ve failed us time after time, filing lawsuits and adopting guidelines that make it harder for us to get prescription opioids – even though over 82% of opioid overdoses are caused by illicit fentanyl and other street drugs.

Patients who suffer from chronic pain all have one common goal: relief. When that relief is interrupted, and access to crucial therapies and drugs is denied, you leave us with few choices. We can either live our lives without pain relief or seek out riskier alternatives. Those are not good choices.

Kristen Hernandez is a freelance journalist and creative nonfiction writer living in South Florida. 

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