A 36-year-old U.S. man diagnosed with stage IV colon cancer in March of this year is now being forced to confront the likelihood of losing his job should he choose to use marijuana for the purpose of relieving symptoms caused by his cancer and cancer treatments.

John Doe is a married father of one. He spent at least ten years as a biologist and environmental protection specialist and planned large scale projects to minimize environmental impacts. He also directed the cleanup of solid waste sites and oil spills for several federal agencies. (We granted him anonymity because if he is suspected of using marijuana he will be fired.)

He told Shadowproof that he hoped to move to the private sector in the months leading up to the diagnosis to be closer to his wife’s family or his own family. “But the diagnosis changed that, since a stage IV cancer patient can’t get life insurance on the private market and the health insurance available to federal employees was a better deal” for him than what was available under the Affordable Care Act. “It’s gotten worse since then.”

After experiencing complications with the prescribed medicines for his cancer, the doctor recommended medical marijuana, “which is required to get a card in the state I had been living in and also in the state in which I live now.”

Since marijuana is listed under the Controlled Substances Act as a schedule 1 substance by the DEA, doctors cannot prescribe it. “Dronabinol/Marinol gets around that by being a synthetic analog— apparently it’s okay if you pay a pharmaceutical company for it, but not okay if you grow it yourself,” Doe said.

Doe was never offered a prescription for dronabinol. Instead, it was recommended he use medical marijuana should he need nausea relief and appetite stimulation, and he used it when he needed it to function, “which was typically for the several days following chemo so that I could stop the nausea. It’s constant, by the way, readers should know that it does not come in waves, and there is no relief.”

But Doe had to hide his medical marijuana use from everyone. “Federal employees are barred from using any illegal drug and can be fired even if the use is on their own time away from work.”

“All federal employees receive a memo each year from their agency solicitor or DOJ reminding them specifically that medical marijuana is not recognized as valid by the DEA, and since all marijuana (except dronabinol) is listed as schedule 1, it’s use is ‘inconsistent with federal employment’ and employees can be fired if they are caught using it or if they test positive during a drug test.”

Unfortunately for Doe, drug testing is likely to expand from law enforcement, firefighters, commercial drivers, and seasonal employees to his position at the agency. Any employee may be forced to submit to a test if there is “reasonable suspicion” that employee is using drugs. “I’m not sure the threat of a lawsuit for discrimination under the Americans with Disabilities Act would help me forestall a drug test. I’d like to point out as well that my use has been limited to edibles, and that I do not work under the influence. When I use, it is after work so that I can eat.”

Back in August 2015, Doe suffered bouts of constipation and diarrhea, symptoms he assumed were triggered by all the stress brought on after having his first child. While the constipation and diarrhea diminished, the issues did not entirely go away.

Doe mentioned these symptoms to his doctor in October, who noticed that Doe had also lost around five or six pounds. “He then asked how the baby was doing and said that I was probably just dealing with stress and asked me to track how I feel and report back to him if things didn’t improve in a week.”

Things did not improve, and he found himself having to use the bathroom more often than usual. After another doctor’s visit, he was asked to make some dietary changes and prescribed a laxative and stool softener with instructions to call back after a week or two if things didn’t improve.

In November, after Doe’s symptoms continued to worsen, he made an appointment for a colonoscopy. Unfortunately, the hospital was booked so he had to wait.

By mid-January, he used the bathroom nearly 10 times a day. “[The doctor] finally ordered a thorough set of blood and stool tests to look for a range of disorders, parasites, etc. Results that came back in mid-February were all in the middle of reference range for blood chemistry and negative for parasites. According to the doctor, I was healthy as a horse, and he gave me a large stack of literature on irritable bowel syndrome. It was at this point that the hospital finally found time to get me in for a colonoscopy.”

In March, Doe finally had a colonoscopy. “I fell asleep on the gurney fully expecting to wake up and hear that it was IBS.” After waking up in the recovery room, the doctor came in and told him that she had some bad news. They found and removed a polyp in his sigmoid colon, which was the good news. He was then shown a picture of an obstruction a few inches further into his sigmoid colon.

“There was a obstructing tumor so large that she couldn’t push the scope beyond that point. Preliminary diagnosis was colon cancer,” he shared. They had to do a CT scan immediately to see if the cancer spread, and he needed surgery within a week to install a colostomy bag to bypass the blockage.

“I remember thinking, ‘Well, if they’d been able to get me in for a routine colonoscopy back in November I might not be in this situation,” followed by “I guess this means I can eat onions and garlic again since it’s not IBS.”

Days after having a CT scan, Doe went in to work to fill out several forms, “mostly making sure my designations of beneficiaries were current and submitting an open-ended sick leave request.” While he was there, he received a call from the gastroenterologist. “My CT results were in, and they weren’t good. In addition to the tumor in the colon I also had numerous tumors in my liver and lungs. That was…hard to hear.”

The doctors put off the consultation for surgery to install the colostomy until Wednesday of that week, but he didn’t make it that far. “My digestive tract was not happy after a full week of nothing but clear liquid, and I had trouble passing anything. My wife and I went to the emergency room on Tuesday and after waiting several hours had surgery to install the colostomy. That went well. Then we met with the local oncologist.”

Doe was told they would focus on palliative care with drugs, and that surgery was not an option. “I give you about a fifty percent shot at living another two years.”

He sought second opinions and got two, one at the University of Wisconsin and another at the University of Iowa. “Those doctors were more encouraging. Despite a stage IV diagnosis and spread [of cancer] to more than one distant organ, they held out hope that if my cancer responded well to chemotherapy perhaps we could consider surgery given my age and otherwise great health.”

As of publication, Doe has done one course, or twelve rounds, of FOLFOX plus Avastin. FOLFOX is a chemotherapy regimen for colorectal cancer, and Avastin is a cancer medicine that is supposed to disrupt the growth of cancer cells.

“I also took and continue to take several supplements my doctors have suggested to me: curcumin, vitamin D, vitamin E, etc. The tumor marker CEA in my blood samples dropped precipitously each time I went in for the next round of chemo, and CT scans at various points during treatment documented shrinkage of the tumors in the liver and lungs.”

While comparing his most recent CT scan to the first scan, doctors have pointed out just how much the tumors had shrunk and noted that some of the tumors in the liver appeared to be mostly dead. “They also said that given my response to chemo, they’d like to give me a shot at surgery. To do that, they need to grow the unaffected lobe of my liver before surgery and then the surgery, assuming it happens, will be a great big invasive procedure to remove the tumor in my colon, some lymph nodes, and the still-affected part of my liver, and burn out the remaining tumor tissue in my lungs. I am looking forward to that, believe it or not.”

Despite undergoing a series of traumatic symptoms, medical treatments, and consultations, Doe continues to work full time, and on a number of occasions he has worked during chemotherapy sessions in the hospital.

At first, the only side effects he felt from the chemotherapy were fatigue and nausea. He told Shadowproof that each chemo session involves receiving an IV drug that helps minimize nausea, and that he was also prescribed prochlorperazine, which is to be taken every 8 hours and scopolamine patches to wear behind his ear to prevent motion sickness.

The prochlorperazine worsened his fatigue, and after a few days of struggling to stay awake on prochlorperazine, he asked if there was anything else they could prescribe. “They gave me ondansetron, which also was to be taken every 8 hours. One doctor mentioned dronabinol, AKA marinol, synthetic THC (and approved by the FDA for treating nausea), but said that would be a last resort if nothing else worked.”

“I wondered why, since I had been researching the hell out of my treatment options and a lot of patients strongly suggested that marijuana was by far the best thing to prevent nausea and stimulate appetite. The ondansetron worked to a degree. By six hours into a dose, I would feel nauseous, and my appetite wasn’t good for several days following treatments. This worsened over time, such that my nausea and suppressed appetite would last longer and longer after chemo sessions.”

“I still continued to work but there would be long stretches of feeling uncomfortable when my nausea wasn’t controlled.”

Should Doe lose his federal employment because he is taking marijuana to help him through cancer treatment, it will mean  he also loses the life insurance policy he has through the government. If he loses that, he would be unable replace it, “as no insurance company will underwrite a new policy for a stage IV cancer patient.”

“Being fired would cost my family dearly in the event that I die sooner rather than later, and losing the health insurance virtually guarantees that I would die sooner rather than later.”

The cost of Doe’s chemotherapy runs between $10,000 and $20,000, depending on the hospital. “The insurance for families has quite a few copays and an annual $11,000 deductible for the family, $5,000 for the first family member to reach that number. I hit $5,000 pretty quickly after my diagnosis so while I still make copays for my family’s medical care I haven’t had to pay any for myself since May of 2016.”

“I will have to start paying the deductible again on January 1 until I hit whatever deductible the insurance company sets for next year, which I assume will be higher than it was this year. I pay something like $350 a month for this insurance and the government pays an additional $900+ as part of my compensation package.

Doe continued, “I haven’t seen how much the premiums in my state of residence will be going up for 2017, but I know the number of providers has dropped to one or two and those providers have limits on office visits, larger copays, and higher deductibles that I currently pay. Were I to be drug tested and fired, I would have to make do with one of those plans that carries larger costs and offers fewer benefits.”

Right now, Doe has friends writing letters to the White House, their Representatives, and their Senators asking for either executive action to modify the 1986 Reagan Executive Order regarding off-duty drug use and to recognize state laws regarding medical marijuana. They are also helping him push for congressional action to grant marijuana the same exemption from the Controlled Substances Act “enjoyed by the alcohol and tobacco lobbies.”

“I’d like to note that the White House responses so far have been tone deaf, and that while the responses have focused on a supposed lack of any therapeutic use of marijuana—despite the FDA approval for dronabinol, lots of state laws, and lots of very sick people saying it works—to avoid action. I’d like to know what therapeutic use alcohol and nicotine serve.”

The White House’s response to these letters is distressing. It shows little concern for those impacted by blanket drug testing and zero tolerance drug policies. It reads in part:

“This Administration opposes marijuana legalization, and our policy approach focuses on improving public health and safety through prevention, treatment, support for recovery, and innovative criminal justice strategies to break the cycle of drug use and crime. A considerable body of evidence shows that marijuana use, especially chronic use that begins at a young age, is associated with serious health and social problems. Studies also reveal that marijuana potency has tripled since 1990, raising serious public health concerns.

At the same time, we share public concerns about ensuring limited Federal enforcement resources are dedicated to pursuing our highest enforcement priorities, such as preventing the distribution of marijuana to minors, preventing the sale of marijuana by criminal enterprises and gangs, preventing violence and the use of firearms in the cultivation and distribution of marijuana, and preventing drugged driving and other adverse public health consequences. We will also closely monitor implementation of marijuana legalization in individual States and prevent the diversion of marijuana to States that have not legalized its use, sale, or distribution. Outside of its highest enforcement priorities, the Federal Government has traditionally relied on State and local agencies to address marijuana activity through enforcement of their own narcotics laws.”

Attorney Stefan Borst-Censullo, Counsel to Hoban Law Group, who specializes in cannabis legislation, explained that the federal government “defined the idea that employers have the right to terminate for off work drug use, and they’ve continued this tradition, regardless of state laws for medical marijuana.”

Borst-Censullo told Shadowproof that this applies to “everyone,” as there is no existing marijuana law in the states which offers worker protection to patients, “and most state courts that look at the issue side with federal supremacy.” When it comes to whether or not medical marijuana users should be hopeful that they will see any changes, Borst-Censullo says no.

“The Colorado Supreme Court ruled against a man with [multiple scoliosis] who was being blatantly discriminated against due to his ADA [Americans With Disabilities Act] status. But because marijuana is federally illegal, ADA doesn’t apply,” Borst-Censullo added.

Doe hoped more exposure will pressure the President and Congress “to step into the 21st century” because “that is apparently what it will take to allow people access to medicine they need without fear of punishment for simply trying to control nausea or pain.” This isn’t just for him, he said. “This is for anybody and everybody in my situation.” He added, “And there are many of us.”