I'm finally getting up enough courage to write a post about a topic that has been heavy on our hearts since Jonathan's diagnosis. I've debated for 3 months now about writing this or not because it is such a political and heated topic that everyone seems to have an opinion about. The intention of my blog has simply been to share our story with family and friends, to offer encouragement to others, and possibly get encouragement when we need it. I really don't want to open a door that allows debate and criticism, but I know that's just what happens with stuff like this. Why I enjoying writing the blog, is because I can be raw, honest, and tell people the truth about what fighting cancer is really like. I feel today if I don't talk about this, I'm not disclosing part of our story that I feel like needs to be shared.
Most of you reading this know quite a bit about me and Jonathan by now. For those of you who don't, if you asked me to describe myself, I guess I would tell you I'm a hard working Christian girl that would land on the conservative side more often than not, on many topics such as this. I'm 29 years old and have never tried marijuana. Until recently if someone around me was smoking it, I would probably begin to look for a skunk in the area. Although Jonathan was probably far less naïve to the subject, he would make the same claim. This is simply our story about our experience down this road of medical marijuana, and it is a frustrating story to say the least.
In July when we receive Jonathan's diagnosis of a very serious form of cancer we had 1,000 questions as you could imagine. When we had our very first meeting with our original oncologist one of our questions was "How do you recommend using medical marijuana along side chemotherapy?" The response was "I don't recommend introducing another poison into your system." In other words, he doesn't recommend we use medical marijuana at all, and we moved on to the next question.
As we began to share our story through this blog, we had numerous people reach out to us and recommend us look further into the topic of medical marijuana. One person even slipped us a joint! To be honest, I thought about just throwing it away, but then again Jonathan was already in quite a bit of pain and he hadn't even started chemo treatment yet. It is legal now in Washington, so I just put it away in a hiding place for a possible rainy day.
Then Jonathan had his first dose of the liquid anti Christ doctors call Cisplatin. He was so sick... I was overdosing him by double the recommended amount of the 1 anti nausea meds they had given us. He was basically comatose from nausea, and just the thought of applesauce would push him over the edge. As Jonathan's wife I was just sick from seeing him suffer like this. He had lost 6 pounds in just days and so for me, it was finally a rainy day! I told Jonathan's mother, who is a chemical dependency counselor about the joint I had hidden away. I think I was looking for her to confirm that it is a bad idea and I should not encourage Jonathan to try it. But as his mother, I think she was suffering right beside me. She looked at me and said I think we should have him try it! I actually began to laugh and confessed to her that we had no idea how to smoke a joint. I find humor in the fact that a biblical based chemical dependency counselor was getting use of her time spent in the 70's and was now explaining to her son how to properly smoke pot. But the reality is, when it's your family, we were desperate for something to help him.
After about 5 minutes from taking a couple hits, Jonathan was sitting upright. This had not been the case in 3 days. He then began to joke around with the kids and shortly after that turned to me and asked for a bowl of cheerios. He ate an entire bowl of cheerios, and a whole thing of yogurt. After about an hour, he made his way back upstairs, and returned to his coma of nausea and pain. What I witnessed in Jonathan at that moment put me on a mission. I needed to get informed about medical marijuana! Once again I had quite a few questions racing through my mind that I needed to get answers to. I think most people in our position probably wonder about this same stuff... that is why I'm sharing.
My very first question was why did our doctor tell us this was a bad idea? It was like a miracle, it worked so well. What does he know that we don't? Of coarse after him telling us we don't want to put any more "poison" in his body I was worried to tell him I had Jonathan try it. So instead of telling him the truth about what happened I asked further about the marijuana. He said it is something only really used for end of life patients to help cope and manage because their is no point in not adding more toxins anyway. But my research found something so much different. What I found was this: Marijuana is classified as a schedule 1 drug federally, same as heroin and LSD. This means that the government views this drug as having no medical benefits to offer and are highly addictive. Cocaine and Meth are considered schedule 2 and more safe. (just think about that for a second...) There are 20,000 medical journals written on the topic of marijuana, the only problem for a cancer patient is that 90% of those articles are written
with the purpose to explain why it is bad for us. It is very difficult to find medical journals written with the intent to find its benefits. However in a brief entry level search there are claims of people using it for Epilepsy, Tourette's, MS, ALS, Loupus, Crohns, PTSD, cancer and the list went on and on. So my conclusion to this question didn't stop at the doctor's answer. The answer that I came to is that it is federally illegal. Any doctor that values his medical license isn't going to risk going into this gray area that has very little medical research done to support the use of it with a patient. They don't actually know what effects it has while taken with chemo, they don't know about dosages, they don't know a lot. There are so many questions yet to be answered with actual medical research that it puts them at risk, not to mention it is federally illegal to use anyway. So of coarse that is the doctors answer.
Which brought me to my next question... Ok, so why is it a schedule 1 drug and federally illegal? So began my search of the history of cannabis... Did you know that our declaration of independence was actually written on cannabis paper? Turns out, years ago, prior to the 1930's cannabis was the cash crop. Not mainly used for recreation drug use, but for everything under the sun. Henry Ford used it in one of his first cars for the metal body. The guy that invented the diesel engine first invented an engine that ran on cannabis oil. It was being used to make things like shoes, ropes, paper, fuel, medicine, etc. Then a guy by the name of William Randolph Hursh came into the picture. He was invested in the news papers, and their printing presses that would print on wood paper. It was the industrial revolution and a machine was just created that made harvesting cannabis and turning it into paper much easier. Mr. Hursh's big investment was now a bad one! So he had the money and the means to write a story about this new drug called marijuana. He published a story about how black and Mexican men were smoking this crazy drug and causing them to rape and kill white women. Mr. Rockefeller who at the time was well invested in Oil (gasoline) jumped on this propaganda. By the 1930s they had a bill in front of congress to make this horrible drug called marijuana illegal. It passed, but what was not clear in this bill was that marijuana and cannabis were the same thing. If congress would have known they were making cannabis illegal, it is believed this bill would have never passed. The first ten dollar bill in print was a display of the wonderful crop of cannabis, why would congress now vote to eliminate it? Were they tricked or possibly persuaded by money?
I instantly called in for help. I have a few medical resources who I asked to go on the hunt for medical journals. Anything that they could find that would tell us what additional risks that using this drug would have on a person that was undergoing chemotherapy. Would it counteract his current prescribed medications? What are the risks that would be any higher than taking an oxycodone or Ativan? I was discouraged when there was very little they could find on the subject. But we do know that over 100 people overdose on prescribed medication every hour. We could not find 1 case of an overdose from marijuana. In fact I found a study where scientists tried to kill a monkey on overdose of marijuana and were unsuccessful. Basically the risks were similar to that of many of the current drugs already being prescribed and in many cases not as bad.
I received a name of a girl that ran a medical marijuana dispenser place here in Spokane. I was told she was very knowledgeable. So I called her... She was very nice and she did know quite a lot about Marijuana. dosages for different ailments etc. I was very nervous by how little she knew about chemotherapy. I asked her what qualified her to help dose patients, Her answer was basically "I for many years have pursued my passion." The struggle we felt is that although very nice and knowledgeable she isn't an MD... she has really no medical training. So now I'm trusting what she tells me over my doctor? What she did do, was forward me onto various medical studies that have been done. (Because marijuana is federally illegal, there are very few)
There is a Dr. Nogarkatti out of the University of South Carolina that has been researching cannabinoids and how they interact with the CB2 receptor. I don't need to explain the boring details that I looked into in depth, but basically the study showed that in 25%-30% of mice were completely cured from cancerous tumors by being treated with the cannabinoids which I think is the CBD compound of the plant. It targeted only the cancer cells and did not harm the healthy cells as chemo does. There are also studies being done in Spain with mice that are also showing the same results. If the mice weren't totally cured, almost all of them had a significant decrease in the tumor size.
After weighing the risks, Jonathan and I made an appointment to get his medical marijuana card. As soon as he was feeling well enough to leave the house after his first round of chemo we made our way down to a some what shady hole in the wall place that had a peculiar smell. I remember sitting in the waiting room listening to a gentleman that was purchasing his license who asked the employee "now that I have this, my ex wife can't pursue me in court for custody because I posses marijuana right?" Then the nurse called us back. She took Jonathan's heart rate and was doing typical nurse stuff, but while doing this, she was smoking on a vaporizer... what I can only assume was marijuana. I kept thinking to myself "what are we doing?" Then we met the doctor! As I sat there and questioned myself on this decision, this doctor eased my mind. As she looked at Jonathan, she could see how he was suffering. She looked him in the eye and told him she has never smoked marijuana in her life, and she gets so much criticism for what she is doing, but for the 1 patient each day that comes in like him with cancer, that is why she is here. She said "this will help you!" She asked all kinds of questions about types of chemotherapy, meds he was on etc. She began to write out natural path medication that she would recommend. Unlike the other patients before us, she walked Jonathan out to the front and told the girls his license was No Charge. I had regained faith in our decision.
When I went to the dispenser place, the girl helped me with recommended dosages of the CBD in the marijuana. Jonathan would be taking very little amounts of the THC which is what actually gives you the high, not what studies are showing to actually help the cancer, but will help with other symptoms. Because we still feel uncomfortable with the variety of research of actually smoking marijuana, we are opting for him to take it in pills. So here is this One drug that now is going to help Jonathan with his nausea, He has 3 prescriptions for that purpose. This same drug is helping him with his appetite, they don't have any prescriptions for that besides Marinol which is the synthetic form of the same thing. This same drug is also helping him with his pain which he has 3 prescriptions for and additional over the counter meds as well. It helps with anxiety and insomnia, Jon has 2 separate scripts for that. So if prescribed by a doctor and given actual dosages of the right compounds of Marijuana, could this replace 6-9 prescription meds? Why are pharmaceutical companies not all over this? So of coarse I researched it!
Marijuana is a multimolecular plant. You can't patent it! It has 421 chemical compounds, 60 of those are cannabinoids. Pharmaceutical companies are never going to pay for research done on something that they can't patent and make money from. The only attempt they have made is with Marinol which is a synthetic form of the THC found in marijuana. This is how doctors and pharmaceutical companies are getting around the schedule 1 drug issue. If you choose to take Marinol for symptoms from chemotherapy, you are eliminating any possible benefit from the CBD or cannabinoid compounds though.
So what is the point in this long blog? If you think I'm
simply jumping on the legalizing marijuana band wagon, you've
NOT felt my struggle. If you are suffering with something, do your due diligence, get informed about all the types/species of medical marijuana. Before you just bake it in a brownie, or roll it in a joint, be as well informed as you can. Today I help my husband dose himself with a medication we don't really know how to dose or use properly with other medication, but not from lack of effort. What we do know, is that is helps. It helps so much more than all of these other prescriptions. So we guess. We lower doctor recommend dosages of this and that and guess what amount of the marijuana will parallel! I do know Jonathan handled his subsequent rounds of chemo far better than the first. We are so frustrated by this process.
The point in this is an outcry for people to really understand what this is like. Maybe if something comes across a ballet somewhere you will be more informed on how this really goes for a patient. We need to bridge this gap between "natural" medicine and "modern" medicine. Why can't we work together? Why does this have to feel like we are doing something wrong? Why won't the government recognize that this is a medication and it does actually work? Then maybe we can make some headway on research so people like us aren't making this decision to guess dosages. We need to make some MAJOR changes here!
For so many years on this subject I would admit I was pretty uninformed. But to be honest, I didn't use the stuff and it didn't effect me at all... So why did I really care. It reminded me of a quote that I read in a book last year. In the words of Holocaust survivor Elie Wiesel, "Neutrality helps the oppressor, never the victim." When I read it I promised myself, that never again will I sit on the sideline and remain neutral. Today I'm speaking out on behalf of my husband, and I have every intention to let my voice be heard on this subject far beyond this blog.
