My CBD experiment and dreaming - in two parts
Not many of you know, but last fall, after I finished the course of cancer infusions that I had from Jan 4, 2017- late August, I saw an MD in Santa Monica who switched his practice 10 years ago from being an internist to instead working with patients using cannabinoid (CBD) oil. He shared research with me from Israel about double blind trials for breast cancer, using standard of care chemo vs CBD oil and the results were pretty good. He also showed me data on initial blood cancer studies which looked interesting enough. I decided to proceed with the CBD oil. CBD MD indicated it would take 8-12 weeks to have an effect on my lymphoma. The western treatment I had last year worked well and shrunk my nodes but I was hopeful the CBD oil would maintain my low tumor burden.
For malignancies, they prescribe what’s called a quad oil, taken orally. It contains four elements from the cannabis plant : CBD, CBD-acid, THC and THC-acid. Research showed that you need a little THC to open up the malignant cells to accept the cancer fighting properties of the oil. I was wary of the THC as the few times I tried pot, mostly in college, it made me dopey, lethargic and down, but CBD MD reassured me that if I felt stoned, I could just back down a dose until I developed THC tolerance. I was to take it 3 times per day on an empty stomach. He had a cannabis collective fill the prescription as they test the product for toxins, pesticides, molds and fungus, all of which are present in most products sold in a public dispensary as they are untested.
I informed de Vos that I was trying this. He said he didn’t know anything about it, but that I should give it a try and we would experiment together. He also said, very emphatically, do not smoke it, especially product you buy on the street as most of what you get is full of contaminants (see above list) and for an immune compromised patient like me, it could be very damaging to my lungs.
CBD MD started me with tinctures under my tongue and gradually I built up to half strength capsules and then full strength capsules. I did feel stoned at times and would just back my dose down until I could tolerate it.
The good news was that almost immediately, my joint pain went away. In addition, my blood pressure went from a normal 120/80 to an even healthier 105/65. CBD MD told me many of his patients eliminated their blood pressure and arthritis meds completely. I wasn’t on meds for either but it was a nice benefit for me.
The not so good news was that also almost immediately, I fell into a pretty deep depression. Now you also have to understand there was a lot happening around this time: Gus was finishing his college applications and I had the empty nest racing toward me; Ben’s sweet 86 year old mom, Joan, fell, broke her hip and passed away one day before her 87th birthday just after New Years; we were finishing our new house in Nichols Canyon with all the pressures that brought; and I was packing up the house pretty much on my own in Santa Monica where we had lived since 1998, 20 years of memories to process. While I had experienced depression over my lifetime (mostly around life changing things like relationships ending, cancer diagnosis etc.), this depression was like nothing I had felt before, there was a huge physical component to it that felt like waves of vibration passing through me.
In addition, a few weeks into my CBD ramp up, I was having breakfast with a friend and felt a chain of tumors in the back of my neck. January 20 we moved to our new place and at that point I was at full CBD dose. I kept going as I was just so hopeful this would help reduce my cancer - I figured another several months at full dose was worth doing and decided that maybe my lymphoma was special and it would take longer for the CBD oil to work for me. As time went by though, the disease blossomed into probably the largest relapse I had had with multiple grapefruit sized tumors. It also got into the tear duct above my left eye again and blocked tear production. The result was a very droopy, puffy and painfully dry left eye. Ben thoughtfully bought me a patch for the eye but it actually hurt too much when I wore it so I can contribute it to a pirate costume if any of you are dressing up for Halloween in the fall.
I was emailing CBD MD, informing him of all this. I was really interested to hear if others reported depression, but he said none of his patients had ever reported this and actually it was the opposite, that patients reported a feeling of well being, hmmm. He told me one of his 80 year old patients reported spontaneous outbursts of laughter. Me thinks maybe he was smoking a bit of his product....
On May 18, I saw CBD MD. He took one look at me and my tumors and pulled the plug on the CBD. I stopped it immediately (there’s still a half bottle of quad oil capsules in my house if anyone wants it, could add an interesting touch to the pirate costume...) and he said it would clear my system within a week. I kid you not, within one week, my depression was gone, holy cow, that stuff is powerful.
While I still believe there are beneficial properties of CBD oil, it just wasn’t the solution for me. I can add it to the long list of things I have tried during the last 12 years - resveratrol and curcumin supplements; vitamin C pushes; boiling and drinking Chinese herbs; eating vegan for about a year (that’s when I learned how tofu “products” are made, no thanks); trying flaxseed oil and cottage cheese (that’s a good one); acupuncture; trying macrobiotic for a very short time (sorry any diet that says you can’t eat tomatoes, sweet potatoes, baked potatoes and mushrooms is illogical to me). Some of the things that did help me were visits to an osteopath who eliminated some acute pain episodes, visits from a reiki master, and massages. I also had healings from a pastor.
All of the above said, I believe that some of these things work for some people, some of the time. Just like cancer, our bodies are individual and what works for one person may not for another.
Very sorry this post is so long, now I will get to the second part which which will be quick and is why I went off on the long CBD oil story in the first place. Plus, World Cup socccer is on in ten minutes so I need to wrap this up.
PART II Dreams and Nightmares
I have always had a very active dream life, and while mostly my dreams are just odd, at times, my dreams have been oddly prophetic. Ask me sometime about the City of Hope anesthesiologist feeding his goats while the sun was coming up, it’s pretty unbelievable.
When I stopped the CBD, the dreams came racing back. This is mostly fine but when I am approaching another fork in the road, like a new treatment, my dreams tend to become negative and nightmarish as I process things while I sleep.
Last night, I had a terrible dream that my genetically modified CAR-T cells were so large they wouldn’t fit into my external catheter line. The doctors, nurses, researchers, and Ben and Gus were all in my hospital room trying to get the cells to fit into the line. They were all wearing masks and gloves but I knew who they were. Just before I woke up in a sweat, Dr. de Vos said “what if she just drinks them?” at which point everyone just put their hands in the air, mystified. Thankfully, I woke up then and knee it was just a dream, not reality, and this is not going to happen.
If anyone has tricks to banish negative dreams, I sure could use them over the next week or two! The A-Z gratitude list was pretty transformative for me so I am hoping some of you have ideas.
p.s. I just got preregistered by the UCLA hospital for my “stay”. One piece of really good news is that because I am in a clinical trial, the pharmaceutical company will pay all of my costs, including waiving the $375,000 one time fee for CAR-T plus my deluxe hospital accommodations for as long as I need to stay. They also cover all of the costs for everything I have had to do over the last few weeks - the catheter placement, blood work, biopsies, echo cardiograms, MRIs, CTs/PETS etc etc. Even the fees for me to park at UCLA Santa Monica and Westwood have been covered.
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