Before heading to my parents’ house, Hilary and I drove to Oakland to hit up a marijuana dispensary, as you do.
Mom was out of CBD oil and her appetite was almost non-existent, so we hoped to find something to remedy that. We stepped into a sleek, airy warehouse flooded with natural light. Caramel-colored wood floors, brushed silver shelving units and pale green succulents caught my eye as did the shiny glass cases full of marijuana, a.k.a. Mary Jane, a.k.a. Sticky Icky. (Oh how I love the slang.) A long line of customers bobbed their heads as Bob Marley’s honey-like voice emanated from the speakers accented by twangy guitar riffs and echoing steel drums. Bob crooned, ”I wanna love ya, I wanna love and treat, love and treat you right.” We surveyed the various tinctures on display and were asked if we needed any help. We did, in fact. A friendly and knowledgeable sales guy with a bushy brown beard and a long ponytail answered all of our questions and recommended a non-psychoactive THC tincture to help stimulate Mom’s appetite. We grabbed a bottle of that, two bottles of CBD oil and a salve for Hilary’s knee as she’s still recovering from surgery. As we stood in line, Hil asked, “Can you believe how nice this place is?” I answered, “No, it’s beautiful.”
I’ve only been to one other dispensary in my life. That one was was nice too – clean with glistening glass cases full of fragrant buds and other cannabis-based products – only it was about a quarter of the size and a bit darker inside. That first dispensary visit was absolutely surreal. It was August and Mom had just been diagnosed with stomach cancer. She was experiencing a pain crisis and the medications she had been prescribed were doing more harm than help. We had asked the oncologist about medical marijuana and she said she would be happy to write a prescription. Dad was nervous. Mom said she would think about it. The idea was so foreign, and there was so much going on at once, I think it was hard for them to even consider the possibility. That night, Hilary and I walked to the Sonoma Square and discussed everything over dinner. When we got home, we sat my parents down for an intervention – only instead of the usual intervention where people tell someone they need to stop taking drugs, we told Mom she should consider taking more drugs. Specifically cannabis. We laid out the pros and cons and asked her how she felt about it. Ultimately the decision was hers, and in the end, she decided she would try it.
The next day we called the oncologist and asked her to write the prescription. While Mom attended an appointment to get fitted for radiation treatments, Dad and I drove to the doctor’s office in Santa Rosa to pick up this precious piece of paper that we hoped would change Mom’s life for the better. I looked at the three dispensary recommendations included with the prescription. Peace in Medicine. That sounded good. We raced back to pick up Mom and just like that, we were on our way in search of some peace. As we parked the car in front of the industrial complex, Dad said, “I don’t know about this.” I didn’t know what to expect but determined to move forward, I replied, “It’s going to be okay. Come on.” We pushed through the door to find a spotless and professional environment. After handing over the prescription and filling out the necessary paperwork, Dad waited in the lobby while Mom and I went in the back to shop. After being given brochures and information about the various products, we mulled everything over and finally picked a few items. Mom purchased a bag of CBD-laced gummies and some THC treats. I had to laugh. Never in my life did I imagine myself shopping in a dispensary with my mom, but there we were!
It took some trial and error, but we finally figured out what worked for her. The CBD gummies made her feel wavy; the THC chocolate squares made her loopy. Based on recommendations from friends and the way Mom’s body reacted, we finally learned that CBD oil with a teeny amount of THC was the way to go. The oil helps with pain, nausea and neuropathy, and it is said to inhibit cancer cell growth. A couple weeks ago Mom ran out of the brand we found worked best for her. Hilary had given her another oil to try, but she said it made her throw up and she stopped taking it. She had actually thrown up a few times in the past week which never happens in the second week after chemo. We needed to find out what was going on. Hil and I gathered the goods in Oakland and made our way to Sonoma.
My parents were surprised to see me. I was surprised to see my mom looking rail thin. I knew at her last weigh-in she was 109 pounds but I didn’t know what that actually looked like on her frame. I gazed at her as she sat on the couch in her powder blue zip-up jacket. I couldn’t get over how frail and petite she was and I was struck by how much she looked like my grandma. She coughed a hacking cough. That didn’t sound good. Hilary and I administered the tinctures immediately. Mom had trouble swallowing a whole dropper full of CBD oil. A little spilled out of her mouth and she almost vomited. Too bad it doesn’t taste very good. I’ve never tried it but I’ve got two eyes and when I put the bottle to my nose, it smelled herbaceous. Not my favorite flavor profile.
My first two days in town I was worried. Mom was so tired and she struggled to eat. And the cough; it actually activated her gag reflex. She stopped herself when she could, but she said she had thrown up four times in the past week. Obviously not a good thing, especially when she needed to gain weight. I wanted to get her some Sudafed or a cough suppressant. She said she’d talk to the doctor about it at her appointment the next day. It was an important one, as Dr. Galligan would go over the results of her latest CT scan and we could talk about Mom’s chemo regimen, which at this point seemed to be too intense.
I was curious to know about next steps. We were told that when the chemo stops working that she would move on to a drug called Neratinib. I’ve spent a lot of time studying adjunctive therapies, alternative therapies, immunotherapies – you name it. I wanted to know exactly why this drug was chosen for her. She was recently offered a chance to participate in a separate clinical trial which seemed to have nothing to do with her genetic biomarkers and in my eyes, the risks outweighed any benefits. Mom considered it and eventually declined. I planned to talk to the doctor and make sure that this drug they were currently recommending was the absolute best choice for her. The night before the appointment I stayed up until 1 a.m. researching various drugs used in stomach cancer therapy to see if there was anything else we could be trying; something with tolerable side effects that would enable her to enjoy life a little more. I closed my eyes and prayed for a solution. Something better than the chemo. Please God. Just help her to feel better.
In the morning, I printed out some articles and tucked them in my bag in case I needed to refer to them. Armed with my highlighter, I was ready to discuss Mom’s options. Ha, I say “armed” as if I was about to enter into a battle with the doctor. In some ways it does feel like a battle. I still am somewhat wary of the care my mom is receiving. I know these doctors are qualified, kind and compassionate people. I also know that they are inundated with patients and they don’t have time to constantly reflect on my mom’s (or any other patient’s) case. A treatment plan has been established and they are sticking to it. I have asked about a variety of options over the past few months and have been told every time that chemo is the only scientifically-backed, evidence-based treatment for stomach cancer and therefore, that’s what we’re going to do. Maybe it is the best plan but I can’t help but think there is something else we could be doing to help her. Is there a drug we could be using in conjunction with chemo? A clinical trial she fits the profile for? Anything? My fear is that my mom has become a number; a product in the assembly line to be looked over briefly until the conveyor belt brings her around again two weeks later. It may just be my anger and disappointment that Mom’s disease is incurable, but this one-track care is starting to feel like an injustice.
I know how to respectfully stand up to injustice. I remember when I was thirteen years old and I was crazy about whales.
I was a member of Greenpeace and I heard that there was going to be a gathering at our local Burger King to protest Icelandic whaling.
The folks at Greenpeace and I were upset with Iceland because of their whaling practices. We were also unhappy with Burger King because they were buying fish from the same country which allowed fishermen to kill our beloved fin, sei and minke whales! Mom accompanied me to the protest that day. We held up signs and chanted at Burger King customers who just wanted to have it their way to “Stop Icelandic whaling!” We explained to anyone who would listen what was happening in the waters surrounding Iceland. At the end of the day, the leader of the protest asked everyone to get in their cars, go through the drive-thru one by one and let the Burger King employees have it. It’s one thing to raise awareness but did these poor employees making minimum wage really need to be berated? My mom and I decided I would politely say, “Please help stop Icelandic whaling,” and we’d honk the horn once as we drove away. We got to the drive-thru window and heard the speaker crackle. A cheerful young man said, “Welcome to Burger King. May I take your order?” We froze. I looked at my mom with an expression that said, “Uh, I have no idea what to do right now.” She turned to the microphone and calmly ordered us a burger and fries. She drove up to the window, sincerely thanked the employee and we drove off with our food, laughing at our inability to get really mad at the Burger King crew.
Although I wasn’t prepared to speak up at the drive-thru, on the day of my mom’s appointment I was totally ready to ask questions, voice my concerns and make sure we were all doing everything we could to outsmart this disease and make Mom more comfortable. I had my highlighted texts and my game face on. Nothing was going to stop me. Then, in classic California style, we got stuck in a massive traffic jam on the 101 Freeway. At this point we’d be lucky if we got to see Dr. Galligan at all.
To be continued.
P.S. A reminder that peaceful protests, even small ones, do make a difference.