It had started after Natasha had finished craniospinal radiation, following her brain tumor recurrence. Gradually, eating had become a chore. She stopped eating meat and then fish. Pasta was "too chewy" and potatoes "too heavy." For a while, my smoothies curbed her weight loss, until she asked me to skip the peanut butter, then the ice cream, and eventually even the banana. My protein-packed high-calorie smoothie had become a low-calorie berry juice, better suited for an extreme weight-loss enthusiast. The drug Periactin, which is often used in cancer patients to restore appetite, failed to work and so did Marinol, an FDA-approved synthetic marijuana. Could the real deal be more potent? A search on the Internet indicated that it might be.
I respond to the call for the "next patient" at the pot club. What am I interested in purchasing, asks the sales assistant whose slurred speech suggests that he might be a patient himself. We settle on a strain of marijuana with THC and CBD levels that minimize the buzz and boost appetite. I purchase a tincture, hop into the car and prepare dinner, my hopes rising that I might have found the ultimate unorthodox fix-it. Minutes after taking the tincture, Natasha's posture droops, her speech slows and she bursts into sporadic gales of maniacal laughter. I take advantage of the apparent good humor and feed her spoonfuls of chicken-noodle soup. After spoonful number four, Natasha's eyes start to close.
Over the next several months we make multiple trips to the pot club, ordering chewables and tinctures with different configurations of CBD and THC. Nothing helps her appetite. Our oncologist talks about a feeding tube. My daughter is about to start sixth grade in a brand new school. A feeding tube in addition to her permanent bald patch? Not the best way for the new kid to blend in. Against our endocrinologist's recommendation, our oncologist prescribes Megace ES, a synthetic version of the hormone progesterone. After two weeks, I notice Natasha eating half a watermelon in one sitting. After a month, she is enjoying a highly eclectic diet of pho, orange juice, dried seaweed and crackers. The weight loss stalls.
But I don't give up on the pot club. A handful of small studies show that marijuana may be helpful to brain tumor patients. One study demonstrates that it inhibits the genes needed for the production of a protein that makes the blood vessels required for a brain tumor to thrive. For more than a year, Natasha takes a capsule or tincture before she goes to sleep at night.
At a retreat for parents of children with brain tumor and neuroblastoma, a group of us discuss alternative treatments. One parent mentions vitamins, another brings up curcumin. I mention our foray into the pot club.
One mother insists she would never give her child pot. An interesting perspective and one that is shared by many parents in Cancerland.
Why the resistance? My daughter underwent conformal radiation, craniospinal radiation, systemic chemo and experimental targeted chemo. The risks and side effects for these treatments are depletion of the body's immune system and subsequent infections including potentially fatal ones; brain hemorrhage, secondary cancers, including a rare and incurable form of leukemia, and benign and malignant brain tumors.
Marijuana never did save Natasha's life. But neither did the mainstream treatments. I'll take the side effects of the other stuff, please.