I was lying face down when I first heard about Stephen Schulman. I’d been feeling sorry for myself, complaining of an aching wrist and back – the vestiges of an age-inappropriate roller skating accident – while my massage therapist Elisa worked to soothe my pain.
Eventually, our conversation turned to her friend Stephen. At only 41, just months after marrying the love of his life, Stephen had gone to the doctor complaining of stomach pains and the inability to keep anything down. He reemerged with a diagnosis: stage-3 pancreatic cancer, inoperable due to a very large tumor wrapping itself around a major artery in his abdomen.
In essence, a death sentence.
Elisa had been buying Stephen sublingual CBD oil – $89 for one ounce – because it proved to be the only thing effectively alleviating the tingling and numbness that had recently consumed his fingers and toes. He and his husband Wade’s savings had been bled dry by their $2,400 per month insurance premium plus general expenses. Stephen is unable to work since his life has become a blur of excruciating pain, treatments, hope, fear, and heavy doses of opioids like fentanyl and oxycodone.
Stephen first heard about the reported pain relief benefits of medical marijuana and CBD oil for cancer patients a year into his treatment. When he asked his doctors about applying for a medical marijuana card, their reluctance confused him. Still, he persisted and when he started using both, he found they controlled his symptoms as well or, in some cases, better than opioids. He also found out that no insurance company covers their high costs.
As Elisa told me Stephen’s story, I considered how the small discomforts I’d come in with made it harder for me to get around in the day or to sleep well at night. How they made me feel irritable and fragile. And how I could pay a negligible amount of money to a lovely woman to help soothe them for me. My ailments were absolutely nothing by comparison to Stephen’s, yet what he needs is elusive at best, prohibited at worst.
Politicians have been embroiled in contentious debates for years about the morality and logistics of legalizing medical marijuana despite reputable studies, like the RAND study, which supports its efficacy. In the meantime, people like Stephen suffer.
I decided to document Stephen’s life because his story had something valuable to remind us all about the gap between the abstract moralizing of politicians and the needs of the people they represent.
These pictures were taken between January and August 2019.
Wade is a freelance hairstylist. Once in a while, he sits Stephen down in the chair in his home salon and treats him to a haircut, shave and facial mask.
Stephen remembers clearly what it felt like to be diagnosed: “It just hits you like a ton of bricks: ‘Everything is about to change.’ Your life is going to be about doing chemo, radiation, things you wouldn’t normally do and it’s going to be a hard, uphill battle.”
Wade adds Osmolite formula, a therapeutic nutrition for patients with increased calorie and protein needs, to a drip every other night to help Stephen maintain a healthy weight. The procedure takes eight hours and is very uncomfortable. Lack of appetite and nausea leading to unhealthy weight loss are common for pancreatic patients. The use of medical marijuana has helped Stephen greatly with these symptoms.
Artist Jason Naylor, whose self described mission is to “spread color and positivity across the globe,” heard about Stephen’s plight through social media and made him the “Love” painting, which he hand delivered to the couple, that hangs above Stephen and Wade’s bed.
Overwhelmed by medical expenses, Stephen and Wade accepted the offer of a friend to set up a GoFundMe page for them.
“We have to lean on each other, trust one another, and be up front about how we’re doing and feeling every single day,” Stephen says of his relationship. “There’s no way I would have been able to get through this diagnosis without Wade. I appreciate him more every day. I know that sounds corny, but it’s true.”
Clyde, one of the couple’s two cats, the other is Bonnie (both male), watches as Stephen tries on his kickboxing gloves. Kickboxing was something Stephen enjoyed with friends before his diagnoses when he was 40 pounds heavier. Now, there are some days he’s too weak to get out of bed.
Stephen describes the current state of his disease; “Stage 3-pancreatic cancer without the possibility of the Whipple procedure because of the placement of the tumor. They do a CT scan every three months and determine the next steps based on those results. A very risky surgery – I believe it’s only performed by one doctor in the US at the Mayo Clinic in Rochester, Minnesota – is my only option and we’re hoping to make that happen. But insurance has, so far, refused to pay for it or the chemotherapy I’ll need beforehand, and it is astronomically expensive.”
“It makes me smile a little to wear fun, colorful socks,” Stephen says in reference to the “cock socks” he wears to physical therapy.
“I think it’s funny,” Stephen remarks, “that in America you’re able to buy alcohol, which is known to cause all these problems, but CBD oil and medical marijuana are more regulated and looked down upon. It’s sad because they’ve definitely helped me immensely.”
In New York State, medication comes primarily in the form of pills, vapes, oils and lotions. Dispensaries can’t distribute edibles because it’s much harder to control the doses a patient receives in them. Every dose at Columbia Care New York is consistent and titrated, meaning it’s increased, if need be, slowly over time.
Tricia Reed, PharmD, Columbia Care New York’s lead pharmacist, describes the purported benefits of some of their products.
“High THC products are good for nausea, vomiting, and severe pain, giving more of an opiate-type pain relief. THC is a good muscle relaxer and helps with sleep. CBD is a great anti- inflammatory, works well for nerve pain, and is an anti-convulsant so it’s good for seizures.
Every dose has to deliver the exact milligram per milliliter as prescribed. Each time you take an inhalation from the vapor, it gives you a specific mg.”
When a patient visits Columbia Care for the first time, they meet with a pharmacist who takes them through a full consultation to determine what products they may respond to best.
“In the higher THC products,” Reed explains, “there can be a euphoric feeling which might not be so bad for patients going through a hard time. It’s similar to the side effects you’d get from other meds like Valium. I encourage patients to think of it that way. It’s just a side effect similar to those of other medications they may have already taken. There is still that sense of taboo or stigma that goes along with marijuana. A lot of what we’ve been trying to do is to de-stigmatize it.
Rosemary Mazanet, an oncologist by original training, is chief scientific officer for Columbia Care. “When I think about the disconnect between the enormous promise that cannabis products bring and the fact that there’s such an air about it that makes it tawdry, it comes down to the fact that it’s federally illegal.”
She adds: “In the state of Massachusetts, where I live, the Massachusetts Medical Society sent a letter to doctors stating that they could recommend cannabis when it was made legal there, but that they were at risk for losing their license. ‘We don’t know what will happen, but the federal government may take action’, the letter essentially said. We do know that physicians at any hospital that’s federally funded will be terminated if they recommend medical marijuana to a patient. That’s made physicians understandably very reluctant. I do get angry because this should be easy and it’s not. We need to fix it!”
“Cancer is a mind fuck,” Wade says. “You’re hit with devastating and debilitating news that your loved one’s life has an expiration date and you realize your own powerlessness and that begins to take its toll on your spirit. All you can do is try to remember that love is the greatest gift you can give anyone.”
“Every day is a waiting game, praying for the best,” Stephen muses. “It’s very scary, but I try to remain positive and think that if the tumor does grow, I’ll just have to fight it and try to remain strong. I have no other choice.”