90.9 WBUR - Boston's NPR news station
Top Stories:
PLEDGE NOW

Mother Goes To Extremes To Prevent Daughter’s End-of-Life Suffering

(dliban/Flickr)

(dliban/Flickr)

How far would you go to ease your child’s pain? How far, really, if your child had cancer? Would you try Eastern medicines and non-traditional therapies? Would you even break the law?

Well, that is exactly what Marilyn Howell did. For all intents and purposes, the former Brookline school teacher committed a crime to help ease the final two weeks of her daughter’s life.

Her daughter Mara was 32 when she was diagnosed with stage four colon cancer. She died 14 months later, after what Howell calls an excruciating odyssey of treatments. There were many rounds of chemotherapy, all of which failed.

“She also did Tibetan herbs with Dr. Dondan, who used to be the Dalai Lama’s private physician,” Howell said. “In Brazil, she also went to see John of God, probably the most famous healer in the world. And while it didn’t stop her cancer, it was an incredible experience.”

Mara, however, was in pain. A lot of pain. Ebbing that pain away was Howell’s primary focus.

In her new book, “Honor Thy Daughter,” Howell writes about the extraordinary lengths she went to ease her daughter’s pain.

Guests:

More:

Excerpt
Honor Thy Daughter
By Marilyn Howell

Chapter 23

When we got home from the hospital, Mara needed me to help her climb the four stairs to the front porch. Rather than taking it as a sign of defeat, she made a commitment to rebuild the strength in her legs by adding one squat and one step each day. I was once again occupied with Mara’s needs and requests, from food to acupuncture appointments. In the aftermath of the hospital stay, both of us seemed reengaged with life.

Mara now wanted another MDMA session. In two months of hospice care, MDMA therapy was the only thing that had given her a joyful and painless experience and the only thing that seemed to hold any hope for healing. I hesitated, unable to forget the physical crash that followed her first session. I didn’t know whether MDMA had precipitated a medical crisis and accelerated her decline or whether it had been unrelated. If it had been related, how could we take that risk again?

Allan and I examined the sequence of events that had followed Mara’s first MDMA session. First, we considered whether the drug, which is known to increase heart rate, could have played a role in the cardiac crisis that sent her to the emergency room. Or was methadone the culprit? Mara’s symptoms began several hours after the peak of MDMA activity and got much worse after the midnight and early morning doses of methadone. Milder versions of the same symptoms had followed previous increases in her methadone dosage.

There was another factor to consider. MDMA both causes sweating and blunts the awareness of thirst. Since dehydration is known to lead to palpitations, it is this dual property that makes the drug so dangerous among youth subcultures that consume large doses of MDMA (sometimes in combination with alcohol and other drugs) and engage in prolonged dancing at all-night raves. The combination can lead to hyperthermia, extreme dehydration, organ failure, and even death. In Mara’s case, methadone was yet another factor in her dehydration.

Some things had changed since the previous MDMA session. After the first psychedelic treatment, MDMA had stimulated her appetite, enabling her to consume more food than she could tolerate given the intestinal blockage. Now, however, the blockage had been removed. She was also on a lower dose of methadone and getting IV hydration every night.

Allan and I concluded that while MDMA probably played a role in the crisis that brought Mara to the emergency room, it was other factors (especially the intestinal blockage) that had led to the lengthy hospitalization. On the other hand, Mara was now much weaker and on twice as many medications. No one knew all the possible interactions between the 15 legal drugs she was on or how they would affect how much time she had left. Allan and I had the same goal as Mara’s medical team—to ease her suffering and make her life as comfortable as possible—but we had a tool the medical team didn’t.

Allan contacted an expert on drug interactions to help us decide if MDMA would be an unreasonable risk given Mara’s changed condition. The physician reviewed Mara’s medications and warned us that since Lovenox was an anticoagulant and MDMA increased blood pressure, the combination of the two would increase the chances of hemorrhaging. The doctor suggested that the Lovenox injections be discontinued the evening before the MDMA was administered.

I asked Mara if, all things considered, she still wanted another psychedelic session.

“Let’s go for it,” she said.

Mara had a lifelong yearning for challenge and exhilaration. As a child, her favorite sports were skiing and horseback riding, activities that frightened me. When she went to college and no longer needed my permission for extracurricular activities, she was drawn to mountain climbing, scuba diving, and whitewater rafting. As a young adult, she led wilderness trips across the country. Part of the appeal of her teaching career was having free summers during which she could test her physical, mental, and emotional strength. She made a passionate case for her point of view in her Master’s thesis on outdoor adventure education.

Risk is an essential element in adventure programming….Since programs take place in the wilderness where flash floods, lightning, wild animals, and broken bones among other dangers are potential factors, instructors cannot eliminate real risk….To shelter youth from reality, with all its dangers and uncertainties, is to deny them real life. Adventure education programs offer students opportunities to confront life and its unpredictability.

There was no death wish in Mara’s approach to life, nothing reckless in her personal choices, and nothing irresponsible in her leadership.

While risk is an essential element in adventure programming, the ideal risk is one that is only perceived to be high, but is actually quite low. The inherent dangers can be minimized through careful planning, well-developed skills, being willing to change course as conditions change, and the ability to let go of a goal that becomes perilous. There’s a question that I always ask myself when in a position to decide whether to engage in an activity: If something goes wrong, can I justify my decision to do this?

As an intelligent and responsible adult, Mara naturally assessed risks and took precautions. She trained me to accept her daring choices and to take pride in her bravery in spite of my protective instincts. She typically omitted the details of dangers she faced until after the fact. She never promised to contact me during her travels and adventures. “If you don’t expect me to call, you won’t worry,” she reasoned.

Cancer had turned our lives upside-down. Mara was no longer able to research opportunities, assess risks, or make decisions on her own. She depended on me. My role had grown beyond working with the medical establishment. Now I was in charge of opportunities outside the law that carried substantial risks—for her, for me, and for Allan. I did all I could to minimize danger. It was no time to be ruled by fear, and I was inspired by Mara’s own courage.

If something went wrong, could I justify my decision?

Mara’s second MDMA session took place in early July, a week after she was discharged from the hospital. Although she’d had a difficult night and was exhausted from extra pain medications, she wanted to go ahead with it.

The setting was the same as the first time, with Mara on the inflatable bed and Allan and I sitting on the green rug at her side. At 10:45 AM, she took 130 mg of MDMA. At first she only wanted to close her eyes and rest, but within an hour she was more alert, with less pain, and ready to engage. Once again, the therapy consisted of gentle music and conversation.

Allan and MDMA were a powerful combination. The drug fosters openness and intimacy, and Allan had a special talent for breaking through Mara’s resistance to medical professionals.

His approach was far from the traditional one in which the therapist doesn’t talk too much, insert too much of his personality, reveal his problems, or expose his values. Instead, Allan was Mara’s teammate in a life experience, a fellow adventurer as eager to be known as to know her. He was a disarming storyteller of personal experiences that were alternately hilarious and inspiring. Through his stories, he connected to the core of Mara’s passions and values. In one story, he told us about a time he visited an animal refuge in New Hampshire.

“The refuge is a haven for dog-wolf offspring that would never make it in the wild but are too dangerous to keep as pets,” he said.

“Do they look like wolves?” Mara asked.

“Pretty much. Most of them are husky or shepherd mixes. There was one funny little guy, a beagle-wolf mix who seemed to know he was different, but he knew his place in the hierarchy and got along just fine. Anyway, Fred, who founded the refuge, took me with him on one of his rounds. There were probably a dozen one-acre pens, each with a pack of about seven or eight animals. Twice a day he touches every single wolf, calls them by name, and speaks to them with affection.”

“Has he ever been bitten?” Mara asked.

“Nope. He said that every once in while an animal will challenge him, and he has to let it know who’s alpha. Fred is a huge, strong guy. He grabs the fur on the back of the wolf’s neck, pushes it to the ground, and holds it down until it goes limp.”

I wondered if Fred would lose his alpha status or his life one day from an attack. Thoughts of death were never far from my mind. I kept silent as Allan continued.

“I felt really sorry for one sickly animal named Silver who had a huge abscess on his rear-end. Silver had recently joined one of the packs after spending time alone in an introductory pen where he could sniff his future pack mates and observe their behavior. Unfortunately, he hadn’t learned appropriate wolf manners: he dug up the alpha female’s food. The female attacked him viciously, leaving gashes on his legs and back. The wounds he could lick were healing, but the infected area was out of his tongue’s reach, and it looked like he was going to die.” Allan gestured with his hands to show the wound was about ten inches in diameter.

“The refuge can’t afford veterinary care. I offered to treat Silver’s wound and got my first aid kit from my car. I knew it would be painful to pull out the infected tissue and apply iodine. Fred stood by with a dart gun, but Silver seemed to know I just wanted to help. He hunkered down, rolled up in a ball, and let me clean and dress his wound. I camped overnight and went back the next day to change the dressing. Silver came up to me wagging his tail, turned around, and stuck his patched-up butt in my face. Five years later I returned to the refuge and made the rounds with Fred again. When we entered Silver’s pen, he cocked his head and looked at me, then bounded forward wagging his tail, jumped up, and licked my face.”

Mara’s eyes filled up, and she looked at Allan with an expression of love. It seemed the right moment for her to open up to him about her own adventures. I urged her to tell him about her all-night vigil to save Brian, the young man wounded by a water buffalo in Kenya.
She described the walkout from Mt. Kenya, the buffalo attack, and her long hours of banging pots, taking Brian’s vital signs, and marking territory with her own urine to survive the night. Her attitude about the aftermath of the ordeal was as revealing as the dangers she overcame.

She and the injured student were the only members of the group who weren’t angry at the National Outdoor Leadership School for putting them in a dangerous situation. Instead, Mara had defended the program and its leaders. The students had been given the tools they needed to survive. They had been warned that encounters with wild animals were possible, had signed a waiver, had experienced close calls when they were with instructors, and had chosen to proceed. No one had been forced to participate. They handled the situation as well as their instructors would have, had they been present.

“I don’t crumble under the weight of intense responsibility,” Mara said. “And I can be trusted with another person’s life. How else could I ever have known, really known, these things about myself?”

Psychedelic therapy let Mara see herself as much more than a bedridden cancer patient. She remembered who she was. Still, she hoped for an even deeper experience, perhaps a window into her deepest vulnerabilities, and a shift that could heal her.

“I’d like to take more,” she said.

At 1:00 Mara took an additional 55 mg of MDMA. Over the next two hours, she talked about private issues—her resistance to intimacy, her fear of losing control, and her dread of betrayal. She described breaking up with her boyfriend and their renewed friendship after she was diagnosed with cancer.

“There’s lots locked up in there,” she said, putting her hands over her abdomen.

“I don’t know when I lost my laugh,” she said. “Nobody seemed to notice until last year. A friend told me she loved to watch my whole body shake without making a peep. That’s when I realized that I don’t even know how to laugh. When I try it feels fake and unfunny. I think it would be a healing thing for me to laugh out loud.”

For the first time since she was under hospice care, Mara cracked open a door to her internal dialogue about her disease.

“I don’t know if I want to find out about my tumors,” she said. “They could be spreading fast or slowly or not at all. There are scans I could find out. I’m open to a miracle, but I don’t want to be defined in those terms, as a lost cause. Whatever happens, cancer gave me the opportunity to seek out God, the Spirit.”

At 5:00 PM the therapy session came to a close. I was grateful for Mara’s respite from pain and encouraged by the deepening of her trust with Allan. She had begun to reveal thoughts she had kept hidden—maybe even from herself—until now.


Other stories from this show:

Please follow our community rules when engaging in comment discussion on this site.

Hosts Meghna Chakrabarti and Anthony Brooks introduce us to newsmakers, big thinkers and artists and bring us stories of relevance to Bostonians here and around the region. Live every weekday at 3.

  • Listen: Weekdays, 3 p.m. on 90.9 FM
  • Live Call-In: (800) 423-TALK
  • Listener Voicemail: (617) 358-0607
Most Popular
This site is best viewed with: Firefox | Internet Explorer 9 | Chrome | Safari