Is there anything worse than being 43 and diagnosed with terminal cancer? A sneaky cancer with no diagnostic test and vague symptoms that, despite repeated visits to a GP, delayed my diagnosis until it was too late. A cancer that has been underfunded for decades with no increases in cure rates or survival time. I couldn't imagine anything worse, but then I found myself in my current situation. In the course of fighting my terminal cancer I discover an "illegal" plant medicine shrank my tumor! Now I am desperately, frantically trying to figure out how to give myself the best change to survive. To simplify each distinct cancer mutation needs a specific mix of cannabinoids, terpines or flavonoids to trigger the apoptosis, angiogenesis and anti metastatic effects. The chemistry is incredibly complex, but there are answers! Experiments can be run, chemical pathways elucidated and methods of action identified. University research groups in other countries are working on it. I would fund the pre clinical science myself, with the last of my cashed out IRA, but my government says the science I need to stay alive is "illegal". This feels so much worse than simple having a terminal diagnosis. The potential to manage my disease is locked away, for me this turns a tragic situation into torture. I know the science I need to do to save my life, but the DEA and Schedule 1 make that impossible here in America. So much for the land of the free!
But it could always be worse, if I wasn't so melanin deficient I might be in jail. This is just one of thousands of similar stories. https://www.washingtonpost.com/nation/2020/07/14/alabama-veteran-marijuana-prison/. Does this make you angry? Then support these great people.... https://www.lastprisonerproject.org/
Without Cannabis I'll likely be dead next year. Standard of care has nothing left to offer me, My oncologists hands are tied by FDA approved treatments, and my insurance coverage. My insurance certainly isn't being helpful. In mid June I needed my regular 6 week bloodwork. We decided it was safest to spend the entire pandemic summer in rural Colorado. Our insurance pays for my routine bloodwork at home, but not here. Apparently I'm not allowed to have terminal cancer while visiting my parents. I even asked my nurse navigator to appeal the denial of coverage. No go. Only emergency services are covered while away from home, and apparently a global pandemic isn't an emergency. To state the obvious, by denying my lab work I have to pay $120 out of pocket, twice, but the insurance saves the cost of that same bloodwork I would have had in SB. There is no incentive to do the right thing. It would be extremely helpful to have bloodwork every 3 weeks, to fine tuning my dosing. Since I'm off maintenance treatment insurance denied it and even pushed back against labs every 6 week. They are rigid- I have no hope they will support me as I forge ahead with Cannabinoids. If I could request my own blood work I would, but despite the fact that it's my blood, my body, my terminal diagnosis, my life I am fighting for, I can't get a blood draw without a doctors request, even if I wanted to pay for it. Our health care delivery system is broken.
I say it again, IF I die of this disease do not say I dies of cancer. I died of the suppression of science. I died from stigma and racism that removed Cannabis from the pharmacopeia and locked it behind prohibition. I died from the intrusion of politics into medicine. I died of scientific illiteracy. I died because NIDA treats Cannabis as a drug of abuse and only funds studies looking for harm. I died because the DEA is drunk on power and addicted to big plush budgets. I died because the FDA doesn't have the balls to stand up to the DEA and demand rescheduling. (if my ovaries weren't frozen in a pathology lab in Oxford I'd loan them too you). I died because the Endocannabinoid system, despite being the master regulator of our health, is only taught in a handful of medical schools. But if I die it was NOT because I didn't do everything I could. I spent hours in PubMed, read every relevant paper, listened to every lecture and podcast, pestered leading researchers, tried to sue the DEA, tried to fund my own preclinical science. If I survive, it will be because I fought hard: against a disease, against stigma, against a rigid health system and against my own government.
Yes, I am feeling pissy and pessimistic. My tumor marker was up a bit last month, and again yesterday, at 9.9. (recurrence is 35) Hopefully it is not worth panicking over because I have been on a haphazard dosing plan. Partly because we are away from the generous growers who make my custom oil. They have a new batch for me but they can't ship it across state lines. And partly because of this. https://www.thegrowthop.com/cannabis-news/california-sheriffs-office-ordered-to-return-cannabis-oil-and-cash. Yep, thats right, the Cannabis enforcement officers "stole" my oncology medicine. Thankfully, a few weeks back a judge ordered the products and cash returned and chastised the Sheriff for the raid, saying there was no wrongdoing, no illegal intent. Just generous people helping terminal cancer patients. I am trying not to worry about my dosing, but papers I recently read add new questions, new issues, complexity I had not even considered. Chemical crosstalk, allosteric modulators, molecule size, sequence of administration, cyclical dosing, resistance. How will I ever figure this out? Am I driving myself crazy trying to solve this puzzle? Probably, but no one else is working to save my life.
When I don't have my nose in PubMed we are hiking, canoeing, playing in the river, playing cards, puzzling, painting pottery, and we took an apiarist class! We enjoyed a visit by Donna, Toni, Vinni and little Desmo the Scrapperdoodle. And I continue promoting my story: hoping to spark research, ignite political change and show "hope in action". (stolen from Dr. Fajgenbaum, cause I love that quote). I recently gave several interviews:
4 podcasts, 1 article are posted online, with more to come.
Mary Biles, Cannabis Voices Podcast
I buried the lead! The spectacular news, the editor of this medical Cannabinoid journal and director of UC Irvine's Center for the study of Cannabis is interviewing me for a "patient perspective" / case report! This isn't how science is supposed to work, but this is where we are after 80 years of prohibition. There are hundreds of cancer patients with amazing remission stories, and until we have RCT each story holds a clue. I was thrilled to read that the UK based Medical Cannabis Clinicians Society is compiling a searchable database with case studies and published science to help clinicians in desperate need of dosing guidelines. Medical Cannabis giants like Tilray are talking about capturing the experience of patients managing a host of serious illnesses.
Efforts like these are so critical until the "real science" catches up. Are you a medical cannabis patient? Have you had a remarkable improvement on Cannabis? Don't let your Physician write you off! Encourage them to write a case report and submit it for publication. We need to capture these experiences, it will inform science and speed research.
I hope you will peruse the new resources posted on Schedule1movie.com: articles, podcasts and lectures I found helpful in understanding the endocannabinoid system and cancer. I collected, curated and condensed 18 months of internet wanderings. I hope these help you get to a better understanding, faster than my journey. Thanks to Patrick for updating the website.
My nightmare? Despite all my study and finessing my dosing, my tumor grows and I die next year. All the while Big Pharma researchers are busy untangling the combinations of Cannabinoids that kill specific cancers so they can patent novel cannabinoid combinations and sell them for big bucks. And all the while the DEA is harassing cannabis users trying to save their lives. Let's work to untangle this nightmare. More news in a few weeks. MK.