Cannabis You Say? No Thanks, I Don’t Use Drugs

Surprise! I use more drugs now than I ever have in my life, ever wanted to in my life and hopefully than I ever will again! Why stop at prescription pain meds?!

Let’s explore my relationship with marijuana and then move onto what I’ve learned about it over the last year.

I distinctly remember the first time I smoked a joint. I was 12 years old, it was summertime and I was wandering the streets all hours of the day and night as many kids did back then. I was with a group of friends who had a hook up with someone who was older and sold pot. We snuck behind one of the local churches after dark and that is where we did the deed. In retrospect, I must say, it didn’t really seem like a big deal to me. Maybe I hadn’t smoked enough or maybe it was bad (or even fake) product. What I know is, I didn’t feel different at all. Fitting in was of the utmost importance to me at that time in my life. I had always been a social outcast. Spent a lot of time alone. It was approaching the climax of my parents unhappy relationship and I desperately wanted to belong somewhere. So, I played along that night I smoked weed for the first time. I giggled and smiled a lot. Said dumb things and they giggled and slurred and fell over with me as we laughed even harder.

I don’t remember the second time I smoked a joint. It likely was soon after though. We eventually became friends with the older boy who supplied us with the first joint which gave us a readily available source. I know for sure that the second time, and every time after that was different than the first. It was stronger. The giggling became genuine. The slurring, sloth like movement and eventually paranoia became real. I’m not really sure why I bothered. Or maybe I am. I had found a group of ‘friends’. My first group since my best friend Crystal had moved away at about 7 years old.

I was about 14 years old the one and only time my dad caught me high. I was visiting friends. Their Mom smoked a lot of pot and allowed them to smoke with her. A few others were over passing a joint around so I took a couple hits. I knew I had to go home for dinner soon but that didn’t really matter to me anymore. I enjoyed the numbness that smoking weed provided. The tension at home was palpable. I hated being there. I hated feeling…feeling anything really; alone, lonely, sad, angry, neglected, betrayed, stupid, different…the list goes on. Numb was good and discretion had left me at some point.

My dad was angry. I knew he was but he didn’t say much at the time. He sort of just let me be. I was surprised but later he shared he knew it was for the best. Much later I came to understand what that meant. When he finally did talk to me about it, we were alone. He had taken me out for a ride on his motorcycle. It was a super comfy cruiser. I always enjoyed the feeling of the wind on the bike. It’s the closest I could have imagined flying would feel like. It was the calmest he had ever talked to me about anything. It was confusing to me because calm was not my dads style. He yelled and threatened a lot. Hit us when we were younger, but never just talked. As I write this now, I realize that is likely because he felt responsible. My dad smoked then too. Mostly hash I think. I recall because a time or two I had enough courage (or stupidity) to steal from his stash…but I digress.

Using marijuana lasted for about 4 years. As I aged and my surroundings and company changed, I started realizing this was not what I wanted for myself. I was 16 years old when I stopped smoking weed. Since then, I can count on one hand how many times I smoked it. In fact, at some point in my late 20s to early 30s, I developed strong negative feelings towards the stuff as a result of marijuana abuse in an old relationship. I developed such a strong disdain for it that I was willing to go to any lengths to protect myself and later, my daughter from exposure to any drugs.

In December 2017, within the first two or three days of being admitted to the hospital with Acute Promyelocytic Leukemia, several chronic users of pot made off the cuff comments about my getting used to using marijuana to manage various symptoms of my condition. At that time, I gave them answers very similar to what I may have said had I never been diagnosed in the first place; ‘Never going to happen’, or ‘They’ll bury me before I use marijuana’.

Within the first two to three days after diagnosis, there was no pain. In fact, there wasn’t really any pain for the first week or more. To be clear, I did have pain as a result of a gym injury that occurred after the onset of the Leukemia, but I had experienced this particular type of pain in my back often in my life so that wasn’t really out of the ordinary for me. Stepping out of myself and looking from a third party perspective, it was really quite intriguing. I had spent my whole life believing that dying was painful. In fact, it was not painful at all. I mean, I was tired…really tired but dying didn’t hurt.

The pain started in the second week after treatment started. It really came on with a vengeance. First was unrelenting heartburn and extreme swelling from all of the IV fluids. I actually looked 6 months pregnant and my skin stretched just the same within a matter of days. At times I thought it would just tear open. Then the mucositis started and covered more than half of my tongue and throat. In the early days, I resisted taking pain meds. When I couldn’t take it anymore, I was given IV dilaudid, a strong narcotic. For weeks this continued to manage my pain. Inevitably, when life started to go back to ‘normal’ (ready or not). I was experiencing significant (and still do to a lesser extent), debilitating joint pain and inflammation to the point of swelling for months upon months that severely impacted by ability to complete day to day tasks, like cook dinner for my family. However, narcotics were no longer an option due to the impact to cognitive function…not to mention they are highly addictive.

About 6 months out of IV treatment and 4 months into maintenance therapy, I was still experiencing extreme pain. Not only that but my anxiety was skyrocketing, I couldn’t sleep but the fatigue was impairing my cognition and reflexes making things like driving very dangerous, and I began having extreme mood swings. With more than a year and a half to go, I needed to find a solution that would help with my symptoms and not incapacitate me at the same time. When I finally caved and decided to at least go for a consultation to learn more, I felt defeat, shame, embarrassment…and desperate. It took a little bit of time to reconcile this decision within myself but once I did, I also decided I needed to approach this with an unbiased view. So, I worked at putting my judgments and personal experience on the back burner so I could learn what there was to learn without a skewed perspective.

I was a little shocked to learn about the process of being approved for the use of medical marijuana. It’s no small task and depending on personal circumstance and mobility, may really be a problem for some people! Now that cannabis has been decriminalized, I can see why patients would choose to go the recreational route. It’s much quicker…though I would question the quality of the product they receive. When I discussed exploring cannabis with my oncologist, he informed me he would have a referral sent to the Canadian Cannabis Clinic (CCC) and they would call me with my appointment information. You see, to get access to medical marijuana, this is the private company contracted through Health Canada to counsel patients.

When I went in for my first appointment, I was terribly underwhelmed by the facility. It was about as visually appealing as the dingiest medical walk in clinic I had ever attended. They had a TV hung on the wall playing videos about all the amazing benefits of using cannabis. The woman at the reception desk was very warm and friendly. She handed me a booklet and an information pamphlet and told me to read everything before I was called in for my appointment.

The first interesting fact I learned was, you shouldn’t smoke or vape marijuana if you have any immune deficiency, including leukemia. Simply put, sometimes marijuana has a fungus called aspergillus that grows on it. It happens. In general, inhaling a very small amount of aspergillus spores is not harmful but with a weakened immune system, or no immune system at all, can make their way into the lungs and grow there. This would undoubtedly result in a trip to intensive care. In other words, in order to avoid further complications, cannabis in oil form was the only ‘safe’ option for me. I was comfortable with this as I wasn’t interested in smoking or vaping anyway. Anything combustible that is inhaled is, after all, carcinogenic which has always seemed counter-intuitive to me. Vaping, well, we just don’t know enough about it yet.

The next interesting fact I learned is, since cannabis is not a pharmaceutical drug, it does not have a DIN – drug identification number. That means that insurance companies have no way of accepting cannabis under their prescription drug plans. As of February 2018, there is only one insurance provider who covers medical marijuana and that is SunLife. No other insurance company has followed suit to date. The good news is, any out of pocket expense for medical marijuana is tax deductible. So while it may be a significant out of pocket expense throughout the year, you will get at least some of that money back at tax time. Click here for more information about what’s happening with Canadian insurance companies and cannabis. Click here for more information about tax deductions and medical marijuana.

After learning these interesting and very important facts, it was time to
make a decision. It wasn’t a very pressing decision to make. I simply couldn’t
take the pain or the exhaustion anymore. So, next was to decide what to use. We
already knew my only option was CBD oil but what does that really mean?

There are two main types of cannabis, both available in oil form; THC
(Tetrahydrocannabinol) and CDB (Cannabidiol Oil). THC is the component that
causes the high (and sometimes paranoia), CBD is the component that causes the calm and is believed to have anti-inflammatory properties. Since I’m one of
those people who used to smoke a joint, laugh like a hyena for 20 minutes and
then hide in the bathroom, paranoid the KGB would find me, I knew that THC was not what I was looking for. There are hybrids also. They contain both THC and CBD. Depending on the producer, there are several blends available – high THC and low CBD, high CBD and low THC and relatively equal parts. One of the important notes to make is whether the blend is recommended for daytime use (Sativa) or nighttime use (Indica). Next was dosing…

There is no hard and fast rules with cannabis except for the maximum
allowable amount for purchase through the CCC. You don’t get a prescription
from your doctor that says, you should take 1 gram of CBD oil, three times per
day for the next ten days and you’re cured of whatever ailment brought you in.
Instead, the recommendation was to start slow. I wonder whether there is an opportunity here for existing perscriptions. Do we really need as much as we take? How about for as long as we take them? Again, I digress…

Considering my main concern was chronic inflammation and pain, the ‘prescription’ was to start with .5 grams of oil, three times per day and work up to a maximum of 1 gram, three times per day or until I found the appropriate dose that would manage my concerns. Since we were starting slow, I decided to purchase one 30mL bottle of CBD oil during my first visit to the clinic.

The process of actually purchasing CBD oil was explained to me during the
‘consultation’ with the nurse(?) at the CCC. After doing an assessment that
spit out what type of product I should be using, he took me to the Aurora Cannabis website where there was a high CBD, low THC hybrid that was recommended. The clinic had to send Aurora my information ahead of time in order for me to be able to set up a login and password for their website. I very simply made the purchase online and waited for it to come in the mail.

It arrived within a couple of days. Very quick. Delivery may be a little
inconvenient if you work a full time job or have a mobility issue because it
can not be left by the shipper without a signature. I opened up my package and
was instantly punched in the face by the smell of marijuana. I read all the
supporting information which suggested dispensing the desired amount directly
under my tongue. This was not a good idea for me. Instead, I went with option
#2. I mixed it in with my yogurt and granola for breakfast. I must say, that
didn’t really seem like the better option! Anyone who knows me, knows I’m a
little picky about what I put in my mouth and this was no exception!

It took a little while to figure out the best way to take it. Knowing the
dose would inevitably increase, I needed a solution quick! I decided to try
shooting the CBD oil with a little bit of my daughters fruit juice. We had a
winner folks!!! It wasn’t long after I started using the CBD oil that I fell ill
with a cold virus. Stuffed up and feeling extra crappy, I decided to take some
daytime flu medicine. According to any and every resource I could find,
cannabis should NOT be taken with nighttime cold medicine, the kind that makes you groggy or puts you to sleep but there was no mention of the daytime stuff or any of their ingredients. So, down the hatch it went.

I’ll never forget that day. I was talking on the phone with a friend after
taking my morning dose of CBD oil and shortly after my cold medicine. A half
hour or so later, I felt jittery so I stood up and started pacing. Five minutes
later my hands started to tremble and my mouth dried up and I was talking a
mile a minute! It felt like a flashback to my teenage days! I called my local pharmacy to ask them about the interaction to which they had absolutely no information and then scoured the internet. Nothing. So, I called my brother who has been using marijuana for as long as I can remember – and come to think of it, has a significant repository of information related to drugs in his brain – and he confirmed exactly what I suspected. That the CBD oil had interacted with the daytime cold medicine. In fact, he advised I should not be using CBD oil with any kind of cold medicine or caffeine. I had taken both with the CBD oil that morning. This was the one and only time I had a negative interaction using CBD oil.

The interaction with the cold medicine freaked me out and I was reluctant to
increase the dosage any further. One of the most important factors in making
this decision was the hefty cost. One 30mL bottle of hybrid CBD oil costs
approximately $100-$120. For those who meet some disability criteria or other exceptions, or with incomes below $30k/year, there is an option called ‘Compassionate Pricing’. Click here for more information. Since I do not qualify for any of these exceptions, I pay full price. If I were using the maximum dose of 3 grams per day, I would require 3 bottles per month at a rate of approximately $350/month. This is simply unreasonable for me.

I used the CBD oil for about 3 months. During that time, I can confidently
report that it helped reset my sleeping patterns by keeping me asleep longer at
night. Rather than waking up around 2:30am and staring at the ceiling for
hours. I would stay asleep until 4:30-5am, resulting in a more restful sleep.
In addition to this, I also practiced relaxation techniques that would allow my
body to relax (quicker). After a few weeks, I had trained myself to relax
enough that I could fall to sleep within minutes rather than staring at the
ceiling or tossing around restlessly for up to two hours before finally falling
to sleep. Once these new sleep patterns were established, I no longer needed
the CBD oil to help me sleep.

As it relates to the anxiety and joint pain/inflammation, the dose as low as
I was taking simply wasn’t enough to have an affect.

Towards the end of my 3 month love affair with CBD oil, my (now) husband and I attended an award ceremony and conference held by The Canadian CML Network, where I was asked to give a speech for, and present an award to my oncologist, Dr. Brian Leber. One of the guest presenters was Dr. Jason Busse, Associate Director of the McMaster University DeGroote Centre for Medicinal Cannabis Research. This was, by far, the most eye opening session of the day.

Dr. Jason Busse shared some very interesting facts during his presentation. Here are a few of them:

• the rate of registered cannabis users in Canada has increased from approximately 23,000 people in 2015 to more than 340,000 in 2018
• there were more than 813,000 medical cannabis users in the United States in 2017. The qualifying condition for 62% of users was chronic pain, followed by multiple sclerosis and chemotherapy induced nausea
• A survey study of 400 oncologists in the United States in 2016/17 was conducted to gather the beliefs, practices and knowledge regarding the therapeutic use of marijuana. 63% of the 400 surveyed responded. More than 66% of them believe that medical marijuana helps manage pain from some extent to a great extent. Less than 10% believed it does not help at all.
• Almost 80% of them discuss medical marijuana with their patients, over 45% of them had discussed it within their patients in the last year.
• In a series of recent studies, results found that there was a moderate quality evidence for chronic pain relief, low quality evidence of reduced nausea and vomiting associated with chemotherapy and inconclusive results regarding effect on weight gain.
• In most cases, there was a noted association of all use with adverse effects such as dizziness, disorientation, dry mouth, nausea, fatigue, confusion, loss of balance, hallucinations, among others.

During the presentation, Dr. Busse talked a lot about the media attention that cannabis has attracted over the last few years. Essentially, what they have concluded is that there are two very distinct mindsets; those who believe in it’s use for medical purposes and those who don’t. There doesn’t seem to be much in-between.

In my personal experience, I would agree with this conclusion. Many non-users seem to associate marijuana with some pretty unfair, negative social standards. I was one of those people. I’ve met a number of people who use medical marijuana and swear by it’s effectiveness. They’ve boasted about it’s ability to manage unpleasant side effects of chemotherapy, such as lack of appetite and anxiety. Others swear it’s the only thing that helps their chronic joint pain and use it in the form of a paste or cream. I even met a man who was diagnosed with blood cancer, opted out of traditional chemotherapy and instead started using marijuana and juicing. Miraculously, his condition improved and even achieved remission. Six months after achieving remission, he stopped using marijuana and relapsed. He was convinced the marijuana has helped him achieve remission and maintain it…until he stopped. Even those who use marijuana recreationally are quick to defend their use. Sometimes, they even deflect by attacking alcohol and it’s known effects. Which leads into the next very interesting point I learned from Dr. Jason Busse.

Since marijuana has only been legalized for medical use in the last few years and recreationally in 2018, there is very limited concrete evidence related to the short and long term side effects of marijuana use. As I mentioned earlier, it was already clear to me that the medical community doesn’t even have a handle on drug interactions yet based on my experience with daytime cold medicine and CBD oil.

I’ll be the first to admit I have newly acquired anxiety as a result of my experience with cancer. I work daily at not being paranoid about the impact of the environment on my health. After all, I have little control over how many cars, trucks, trains and planes there are in use today. I have a little more control over the quality of the food I nourish my body with and will eventually start my own garden so I have even more control in that department. However, I have full control over what drugs (yes, i realize marijuana isn’t a ‘drug’…you know what I mean) I put in my body. Using one which does not offer me the opportunity to make a decision with a clear understanding of the short and long term side effects, or even the ability to anticipate interactions with other medications simply isn’t an option for me. That’s not to say it doesn’t have it’s place for others. Experiencing the level of chronic pain, anxiety and – dare I say – depression I have over the last two years, I completely sympathize with those who made the decision to use it.

That said, I look forward to following the progression of marijuana research in Canada. Clearly, it’s not going anywhere and if there is the promise of more natural means of managing and/or resolving health issues, with potentially better short/long term outcomes, it’s worth considering. In the meantime, I use turmeric for inflammation control and I’ve my joints as needed. It isn’t a perfect solution but at least I know what it’s doing to me.

For more information on the Michael G. DeGroote Centre for Medicinal Cannabis Research program, click here.

Until next time, keep up the good fight.