A Tribute to Patients
The Wall Of The Unknown Patient
As a tribute to the brave people who ever have, are currently or
will face a battle with cancer, we highlight the stories of two patients, who participated in clinical trials thus paving the way
for new treatments in the war against cancer.
The names of these patients have been altered for their privacy.
A Real Wonder Woman
Think of a heroine.
In your mind maybe she has long raven hair, ivory skin and emerald eyes with a costume that consists of red boots, a silver tiara and a pair of indestructible bracelets.
Because here’s an image that you won’t find in DC Comics’ The Adventures of Wonder Woman:
Her hair is brittle, her skin is sallow, and underneath her flowing hospital gown she’s all skin and bones. Her hospital gown flows like a cape precisely because she’s all skin and bones.
Patient Karen may not have looked anything like Wonder Woman; she may have been pale (for an African American woman) instead of hale; she may have worn slippers instead of red lace up boots and a hospital gown instead of a crown but with every ounce of her exceptional spirit and courage she stood up even when she couldn’t physically stand anymore and fought for what she believed in—not only for herself but for everyone else that has or ever will have cancer.
She participated in a clinical trial.
That’s exceptional for three reasons: 1) because less than 1% of the population participates in clinical trials 2) because among African Americans participation is less than 1% 3) because without clinical trials no new therapies could or would be developed.
Unfortunately real-life heroines aren’t immortal.
And so on Saturday July 7, 2012, Karen, a Wonder Woman in her own right, lost her battle against pancreatic cancer. She was 52 years old.
What’s indestructible about her is her legacy. Call her an auntie-hero. She was an aunt, a mother, a wife and role model to all of us—not just to women and African Americans.
It’s easy to be a heroine when you have exceptional durability, strength, endurance, and stamina.
It’s an entirely different story when you’re exhausted, nauseated, anorexic and anemic.
It is our hope that the bright spark of courage and hope which Karen and her husband carried in defiance of the black hole of the tumor will ignite a flame of indignation and outrage against cancer starting in San Diego and spreading to the rest of the world. May this fire turn into a conflagration that will burn down the barbed wire fence of prejudice, fear and ignorance surrounding clinical trials.
What Karen clearly, unmistakably and unequivocally showed all of us is that you don’t need boots or a cape to be a Superhero—just the moral courage to stand up and act against injustice.
She intentionally sought to change the world and by her example so can we all.
Mel and his Boat Shoes
You could imagine him on the weekend, as an adult, in Bermuda shorts, a t-shirt, and boat shoes or flip-flops grilling hamburgers and hot dogs out in the hot sun, or on the Tennessee River in a sailboat with a crisp breeze filling the sails and the bright sun sparkling off the water.
At the end of the day, Mel’s face would feel hot, itchy and uncomfortable and he would know, without looking in the mirror, because it had happened to him countless times since childhood, that his fair freckled skin had turned bright red, as if he were embarrassed, which, in retrospect, he should have been, for not regularly wearing sunscreen, sunglasses or a wide-brimmed hat in place of a baseball cap.
His only excuse, he would tell himself, is that he didn’t know, no one ever told him that the sun’s rays could be dangerous, certainly not his parents, who encouraged him to play outside and took him regularly when he was young to Shady Beach, which was anything but, in Bean Station, Tennessee during the summer. His mother made little clucking sounds and “tsk-tsk” noises while she fussed over him, tousled his sandy hair, and applied the aloe vera cream to his red blistered face. When he went to the dermatologist for the first time in his life in his early 50s, at the insistence of his wife, for the large inflamed mole on the side of his face, he realized that the years of sun exposure, which he thought was healthy and good for him, had resulted in malignant Melanoma.
This portrait of Mel is entirely fictional. Mel isn’t even his real name; the “Mel” is an identifier for Melanoma. The opening paragraph was imagined, rather than real, because, as a clinical trial participant, Mel’s privacy and identity are strictly protected. All we know about Mel is that he is a married 56 year old man from Tennessee who initially received chemotherapy and radiation to treat the Melanoma which spread from his cheek to the surrounding lymph nodes in his neck prior to enrolling in at least two clinical trials. Because Mel was prone to nausea and vomiting in anxious anticipation of taking part in clinical trials, even though the experience was uniformly positive for him, he received an intravenous sedative called Ativan, a medication similar to Valium, to calm him down before starting treatment.
In the second clinical trial, the study drug was well-tolerated, with no side effects, however, unfortunately, in October 2011, a week after his second treatment, he developed a seizure and was taken to the hospital where a CT scan of his head showed metastases or a spread of the cancer to his brain, a frequent complication of melanoma.
It is estimated that 1 in 75 Americans will develop a melanoma in their lifetime. This lifetime risk is even higher for whites (1 in 50) who, because of their increased susceptibility to sunburns, are the primary targets for melanoma. Blondes may have more fun, but they also get more sun, as fair skin, light hair, and light eye color predispose to melanoma.
While malignant melanoma rates tend to increase with age, they have also spiked in women under the age of 30 due regular use of tanning beds and failure to wear protective clothing such as long sleeves, long pants, and wide-brimmed hats. Hey, the stats are in favor of hats, the wider the better, so practice safe sun and wear them!
Detection due to inspection is an important part of preventing melanoma deaths and complications so remember your ABCDs—A is for asymmetry, B is for border irregularity, C is for a change in color and D is for diameter. Look at the melanoma pictures and revisit the ABCD criteria in this website to determine which moles need to be examined by your doctor. If the tumor is discovered when it is thin and confined to the top layer of the skin, the epidermis, before it invades into the dermis, surgery is 100% curative
Once melanoma has spread or metastasized cure becomes much more difficult. The lungs, bones, liver and brain are preferred sites of metastasis. We believe that Mel would want everyone to know this information so that they don’t suffer his fate. Ignorance about the sun isn’t bliss. It’s blister. Indeed a tendency to turn red and blister, like Mel, is one of the most important risk factors for melanoma
We wish Mel the very best and take our hats off, or rather, to avoid undue sun exposure, leave them on, in tribute and sincere gratitude to patients like him that extend the frontiers of medical knowledge by participating in clinical trials.