Receiving a cancer diagnosis is a terrifying experience for anyone. My brush with such a diagnosis occurred in September when my doctor urged me to see a urologist to rule out bladder cancer. Medical information abounds online, which is how I became an overnight expert on the two kinds of bladder cancers and the invasive procedures used to diagnose and treat them.
My home base is considerably left of center on the anxiety scale, but my fear of what lay ahead became formidable and consuming. Fueling my anxiety was a family history that has left three relatives dead from kidney disease, uremic poisoning and bladder cancer. Fortunately, my cancer scare was only that, but those terrifying weeks gave me a glimpse into the lives of the 14 million people currently living with cancer in the United States.
Had my diagnosis gone the other way, I would have dealt with a host of physical and emotional changes that could have left in their wake some measure of sexual dysfunction. This is not the first thing we tend to think of when someone gets cancer, yet cancer can ravage a person’s sex life, as well as their body.
The Importance of Awareness, Support, Mindfulness and Willingness
Every couple’s journey is fraught with impermanence, but in the case of cancer, 50% of relationships do not survive — even if the patient does.
On the other hand, with the key elements of a support system, awareness, mindfulness and willingness, cancer can strengthen a couple’s emotional and erotic connection. Even as physical capacity ebbs, mindfulness and willingness can flow—as I have written about in Mindfulness and Willingness Are Game Changers. Indeed, some couples actually become stronger and more intimate than they would have had cancer not shown up in their lives.
In this article, we follow the story of two such couples who became stronger in the face of cancer: Ken and Treya Wilber, and Eve and Michael Cook.
Two Couples with Cancer
Ken Wilber can perhaps best be described as a transpersonal philosopher, who, with his wife Treya, wrote extensively about their five-year journey with breast cancer in the book Grace and Grit. As newlyweds in 1983, 36-year-old Treya was diagnosed with breast cancer. Instead of basking in conjugal bliss during their honeymoon, Treya underwent a mastectomy.
Eve and Michael Cook operate Elohee, a retreat center in the North Georgia mountains where we sometimes hold our Passion and Presence retreats. Eve was diagnosed with Hodgkin’s Lymphoma in 2009, one month before her wedding. Normally considered the cancer “you want to get” because of its 90-95% survival rate, Eve relapsed continuously during four years of taxing mainstream and alternative treatments.
While Eve received a clean bill of health in March of 2013, Treya did not recover and died after six years of conventional and alternative care, in 1989. There are differences in their stories, as Eve and Michael benefitted from more of a support system. Yet both couples demonstrated mindfulness and willingness in different ways on their cancer journeys. Both developed resilience and even post-traumatic growth in the face of cancer.
Sadly, general levels of awareness about sexual side effects of cancer are still not optimal, so let’s start there.
Awareness of the Sexual “Side” Effects of Cancer is Crucial
Awareness of what can become the “new normal” helps us prepare better. Rebecca Clay explains that a lot of younger women with cancer go from having reasonable sex lives to having to cope with considerable sexual difficulty, and they tend to blame themselves for not coping better with those so-called “side” effects.
Knowledge is power, so here’s what you might expect:
- About 50 percent of breast cancer survivors experience a loss of desire, and intercourse can become painful. The impacts are even higher for those with ovarian, vulvar or pancreatic cancers.
- Radiation and chemotherapy for cancer of any kind can bring about the early onset of menopause in young women, and radiation to the pelvis can create vaginal soreness and shortening of the vaginal canal.
- Sexual side effects are not limited to women, however. Men with bladder, colon, prostate, testicular or colon cancer may experience erectile dysfunction, loss of desire and ejaculation problems. Chemotherapy can also render men infertile and remain in semen for up to 72 hours, requiring the use of condoms to protect their partners from exposure.
- Concerns about body image resulting from surgery and hair loss, combined with nausea, low energy and depressed mood, can also affect the sexual capacity of both men and women.
In the 80s, Ken and Treya experienced an initial lack of awareness of sexual side effects which led them to raise levels of awareness for other couples towards the end of their story. Yet even today, when I asked if Eve had received sexual education or counseling from her healthcare providers, she said, “It was appalling how little information I received other than, ‘It’s normal to lose your sex life and gain weight.’”
Unfortunately, statistics show that patients may still have to educate themselves and their healthcare providers on these sexual side effects rather than the other way around.
Missing Breasts, Losing Desire
Current research indicates the fallout from chemotherapy is typically harder for a lot of women to deal with than losing a breast or breasts.
As a newlywed, Ken wrote of Treya: “It’s no secret that in our society breasts are the most visible and ‘prized’ symbols of a woman’s sexuality, and losing one or both breasts can be devastating. I was always struck by how relatively well Treya had handled this difficulty. Of course she missed her breast, and of course she complained bitterly on occasion, to me and to her friends—it was a very difficult time. But by and large, as she often said, ‘I think I’ll be okay.’”
In fact, some women are now proudly reclaiming their new breastless bodies after cancer instead of undergoing reconstructive surgery as the positive choice known as “going flat.”
It was the effects of chemotherapy that were to cause a far greater toll for Treya than losing her breast. After her chemotherapy regimen began, Ken described her as…”often too tired, too exhausted, to be interested in sex at all, and then she feels terribly guilty about not being there sexually for her man. And so to undesirability is added guilt.”
Willingness to See Yourself as Broken Open
While cancer drew Eve and Michael closer, things were not easy for the couple. After a failed bone marrow replacement, Eve fell into a deep depression. Her surgeon insisted that her only option was to try again, but that it would likely give her only one more year to live. Eve reflects, “I had to go through a complete shattering of my being to be where I am now.”
Things turned around for Eve and Michael after they found their “angel” — Dr. Fred Schwaibold, D.O. “Dr. Schwaibold gave me hope and was the first doctor who really cared about me,” says Eve, who underwent six months of an alternative type of radiation treatment and then had surgery to remove her badly destroyed spleen.
Eve reached a decision to no longer postpone her dream of building a retreat center. She quit her job in the education department of her parent’s functional medicine lab and moved to the country to build a house with Michael that she might never live in.
Despite all their challenges, Eve’s diagnosis had drawn her and Michael closer together, while Treya and Ken’s relationship, lacking social support, moved to the brink of collapse. Ken wrote “…the overriding problem, was simply that, in my desire to do anything to help Treya, I had for over a year completely submerged my own interests, my own work, my own needs, my own life.”
In this terrifying and stressful year, Ken and Treya had no sex at all. Ken wrote, “Treya, understandably, felt it was largely because I found her “mutilated” body undesirable.”
Ken explains that, “…it wasn’t her body so much as her that I didn’t like too much, and that naturally translated into sexual terms as well.” “As I became more and more bitter and resentful and sarcastic—and depressed and exhausted—Treya was becoming more and more defensive, obsessive, demanding, even grating. But I suppose the simplest and most crushing mistake I made was this: I blamed Treya for my woes. I had freely and voluntarily chosen to set aside my own interests in order to help her, and then when I missed those interests—missed my writing, missed my editorial jobs, missed mediation—I just blamed Treya. Blamed her for getting cancer, blamed her for wrecking my life…”
Ken and Treya had also been broken open. Now they had a conscious choice to split up or to work on healing together in a healthier way. They chose to consciously practice an ever-deeper sense of awareness and mindfulness.
Willingness to Be Physical
Like Treya, Eve’s desire also flat-lined during treatment, but she and Michael maintained a sexual relationship the entire time. What is most striking to Eve, however, is how intimate she and Michael could be without having sex in the conventional sense. “The deepest times were holding each other and not saying anything,” she recalls.
“Luckily, I have a wonderful husband who never made me feel badly for not being up for sex,” says Eve. “For a while, I tried wearing wigs and sexy lingerie, but Michael would say, ‘I like to see you as you are.’ This helped me not feel like an alien, even though I will be partially bald for the rest of my life and am considering a preventive double mastectomy.”
As I described elsewhere, when we check inside to see if we are willing to be physical, even without desire, we can still have a very good time. Our erotic connection can be loving and deeply pleasurable. Indeed, it’s clear that the long, deep embraces that Eve and Michael experienced were some of their most blissful times together.
Mindfulness and Menopause
From Treya’s journal entries, it seems that the most devastating impact of chemo for her was her loss of fertility, as she was plunged into premature menopause. She had really wanted to have a child with Ken, which was clearly no longer possible. Given a lack of awareness about sexual side effects of cancer treatments at the time, Treya was not prepared for the mood swings and vaginal dryness that accompanied menopause.
Chemotherapy also brought on menopause in 34-year-old Eve, who harvested her eggs early in her treatment. Eve also went on bio-identical hormones, but discontinued them because she has a genetic risk for breast cancer. She ultimately decided not to become a parent because her life expectancy is shorter due to the bone marrow treatment she received.
With mindfulness we can bring a sense of self-compassion and heartfulness to our experience, regardless of the challenges. When we accept our changing bodies and hormones, instead of resisting them, we can recover a sense of peace.
And a really good lube helps too! Like so many women after menopause, Treya and Eve struggled with painful intercourse and both discovered the importance of good lubricants – on their own. In Eve’s case, it’s a homemade concoction of coconut and avocado oils.
A Support System is Vital
When Treya got sick, she and Ken decided to move to Lake Tahoe, thinking a change of scenery might help. But, despite their beautiful surroundings, Ken became chronically sick himself. They had not foreseen how the move would leave them without a much-needed support system of family and friends. Eventually they moved back to where they could get support.
Ken wrote that if he had his time over again, he would still be there fulltime for Treya “…but I would do it differently, with more of a support system for myself in place…” As Treya went into remission for a while, she and Ken participated in local cancer support groups. They also started couples counselling to learn how to deal with each other’s different coping styles and triggers in a less reactive way.
Eve is adamant that a strong support system was crucial to her healing. Blessed by a family who pulled together in the aftermath of her diagnosis, they were determined to be by her side, helping the couple buy land and build a home in the mountains.
What Else Can We Take Away from Their Stories?
As Treya and Ken chose to approach Treya’s illness in an ever more mindful way, they resumed their mediation practices, which helped them adopt a “both/and” type of attitude. Treya did all she could to heal her body, but when her diagnosis became terminal, she had developed the strength to accept her illness and likely death.
They saw this as a spiritual awakening to “wei wu wei” or “action no action” as Taoists call it, which is often translated as “effortless effort.” Her illness had become an opening to “Grace and grit. Being and doing. Equanimity and passion. Surrender and will. Total acceptance and fierce determination.”
Linda Graham describes mindfulness as a “central resilience-building approach” in her book Bouncing Back. “… that allows us to see clearly what’s happening and how we are reacting, to respond to triggers and traumas with far more open-mindedness, and to face the process of necessary changes with far more flexibility and tolerance.”
Eve found solace through Chi Gong, eyes-open meditation, movement and sound, and by fulfilling the mission of Elohee “To be a home, rooted in nature, for deepening human awareness, facilitating the healing of mind and body, and transforming individuals and society.” As Elohee’s Facilities Manager, Michael could build things and stay active — his preferred ways to relieve stress.
Post-Traumatic Growth is Possible
If we survive, and more so if we are dying, “Crisis, suffering, loss, the unexpected encounter with the unknown – all of this has the potential to initiate a shift in perspective. A way of seeing the familiar with new eyes, a way of seeing the self in a completely new way.” (Rachel Naomi Remen).
Eve agrees, and says she no longer fears death and is filled with gratitude for all of the love in her life. She adds that she and Michael experienced some of the most “touching, sweet and moving times” during her cancer ordeal, even though they were unquestionably the hardest.
For couples who survive cancer, the experience of surmounting a life-threatening illness can be used as a “crucible experience to reconstruct their lives,” as David Schnarch writes in Intimacy and Desire. “They don’t return to their prior level of functioning, they go on to greater levels. According to one scientist who is also a cancer survivor, ‘Post-traumatic growth is above and beyond resilience. Life after cancer means finding a new normal, but for many the new normal is better than the old normal.’” This can also apply to sex.
Sizzling Sex is Still Possible
If sexual and genital functioning is compromised (and even if it is not) we are free to follow our erotic flow into a more creative form of sexual expression. We can choose to leave a fixation on penetration and performance behind, transcending the conventional frame around sexuality. This allows couples to reach new levels of intimacy by becoming an Erotic Team.
This creativity is something those of us who have been spared from the terrifying and arduous cancer journey can also benefit from. As we embrace a more fluid vision of sexuality, we also access more and more of our Pure Erotic Potential. This happens when we revision sex from a goal-oriented, orgasmic-driven achievement to an improvised dance that requires nothing more than our presence, curiosity and openness to the changing face of eroticism.
“My husband is a normal, healthy man,” says Eve, “but staying connected to my sexuality is also important to me. This requires being intentional since my libido is low from menopause and diminished functioning of my thyroid from radiation to my chest.” Nonetheless, Eve and Michael have found creative ways to stay intimately connected, such as planning erotic dates and alternating giving and receiving (“so there’s less pressure and we don’t have to draw things out”). When they do make time for sex, Eve’s the one to say: “That was fun, we should do that more often.”
How Can Mindfulness Enliven Your Sexuality After Cancer?
For the past ten years Lori Brotto, a researcher at the University of British Columbia has pioneered the use of mindfulness to treat sexual side effects resulting from cancer (as well as other sexual problems). The results have been promising. Participants of her 3-session and 8-week programs report having more tolerance of discomfort, more sensitivity to pleasure and arousal, and more acceptance of bodily changes.
The elements of these programs: mindfulness training, combined with sexual education and sensory exercises, are also part of our Passion and Presence program.
Is Passion and Presence for You?
At Passion & Presence, we help people who don’t want their cancer or survival from cancer to stop them from having a loving and deeply pleasurable erotic connection to their long-term partner. Our emphasis on teaming has helped hundreds of couples use their sexual difficulties to become intimate and connected allies.
If you are dealing with sexual challenges, we can help you find new pathways to pleasure that honor your changing capacities.
Come join us! Looking forward to meeting you!
Very warmly, Maci