“This is a detour... but I still have a life”

Mary Jo Rapini with Dr. Barb

Mary Jo RapiniMary Jo Rapini is a psychologist, author, and frequent communicator advocating for healthy relationships. In addition to her work with couples, families, and individuals, she’s a regular on Fox Houston 26 with a segment on healthy relationships and “Ask Mary Jo”; she’s also appeared on CNN’s Prime News, the Today Show, and Dateline. She’s co-authored three books, including one that supports mother/daughter conversations about sexuality, and one for couples seeking greater intimacy. Mary Jo was also an early advisor to MiddlesexMD, providing insight into the emotional aspects of intimacy and desire. (Find her guest blog posts or contributions to Dr. Barb’s here.)

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We're building a community of people who aren't afraid to advocate for themselves.Barb: Today our topic is going to be concerning intimacy after cancer. Our guest today has been a friend to MiddlesexMD for a number of years. If you are a regular reader of our blog, you likely recall reading her wisdom responding to issues of self esteem, relationships, and cancer recovery. Mary Jo Rapini is a therapist who works with couples, individuals, and families to build healthy, genuine relationships. She also frequently speaks and publishes articles on a range of topics related to intimacy. She is definitely a missionary for the cause. Welcome Mary Jo!

Mary Jo: Welcome. It’s so good to be here, and thank you for inviting me.

Barb: Yes, well, thanks for taking your time to share with our listeners.

Mary Jo: Well, I love your listeners! I’m constantly reading your stuff, and I just think it’s great because they can actually come, and it helps all of us. We’re building a community of people who aren’t afraid to advocate for themselves and understand the importance of healthy intimacy and sex.

Barb: Exactly, and while I may work on the health side of it, I think maybe a more important aspect of a healthy relationship probably comes from the emotional side of it, so it’s great to know that there are individuals who are dedicated to try to promote healthy intimate relationships as well.

Obviously, cancer poses a somewhat unique challenge to many individuals, both men and women. We’ve both worked with patients in this situation, but can you speak more specifically into how a cancer diagnosis may affect a woman’s sexuality?

Mary Jo: Well, I think basically what ends up happening is, you just are stunned when you first hear it. You can’t think, you know; “What has happened?” And everyone needs to know, when they get a catastrophic illness, “How did this happen?” They are looking for how they could have done it differently or who is to blame. And the truth is, many times no matter how well you take care of yourself, you’re going to get that.

This is indeed a detour, it is a breast cancer, but I still have a life.It immediately shifts you into a fear and this is why, many times after a woman get diagnosed, you’ll see them panic, and they’ve got to find the right person, “I’ve got to go for more.” Many times you get so absorbed in the diagnosis that you forget: “Listen, this is indeed a detour, it is a breast cancer, but I still have a life, I still have other things that make me a, you know, vibrant woman, and I want to keep those things intact. And then also care for me and get the treatment I need.” And I think that that latter part is more important for healing.  All the medical staff and basically good friends have to support that idea that right now their friend is confused, overwhelmed, and stressed out.

Barb: I’m curious about when individuals, or maybe couples, are likely to seek someone like yourself to help navigate this. Is it ever, or often, that couples have the insight that maybe we should bring along a professional to help navigate this? Or is it more often on the other side? Or is it maybe post completion of some treatment and they are sort of struggling to figure out how to reunite and restore their relationship?

You're a whole person. This is a part of your life, and it's not your whole life.Mary Jo: Right, that’s a really good question. I think that most of the time what ends up happening is when they’re in the initial stage, they don’t think about their emotional state. They are so worried, they are so scared that they almost completely rely on the medical community. And I think that’s where the medical community really needs to step in and basically remind that patient, “Listen, you’re a whole person, this is going to be part of your life, and it’s not your whole life,” – really focus on the present and offer hope and encourage counseling.

When I get patients from a doctor, as a doctor referral, the patients do so much better, because they take on, they embrace the trust that the physician has for the therapist they’re basically referring to. So when they come to see me, they see it as a normal part of their treatment and their care going forward. They come in and they want to know what I have to say, and they trust me.

Unfortunately, you see those couples who are on the verge of divorce after treatment; they’ve lost a lot of their intimacy, they felt incompetent to handle what was happening with them as a couple, with being intimate again. And those are the ones that are really sad, because after you’ve been abandoned in a treatment, like, let’s say it’s a woman who has breast cancer and her lover abandons her because he doesn’t know what to do, so he withdraws, you will really really hurt your relationship, instead of doing the little things, being a good listener and asking her what’s going to be the most helpful and taking the opportunities.

Barb: Because it’s Breast Cancer Awareness Month, and because that’s a very common cancer women experience, and the treatment and surgeries related to breast cancer treatments often do have direct sexual consequences versus what they may experience for different other types of cancer: Can you give us specific concerns or questions women or couples bring to you, specifically around their breast cancer diagnosis and treatment?

Mary Jo: Yes, I think the biggest thing for women is, “How will we ever work as a couple again? Like, he’s seen me so fragile, they took a part of my body that is so significant to myself as a woman.” And they feel a lot of times embarrassment and shame, and there’s awkwardness in the bedroom. Especially the first couple of times.

Whatever we do, we're going to be a team.But what we know now is that couples who are able to communicate and talk that through and go with the stages with that, they actually can develop a deeper, stronger, more intimate relationship, because it’s this being in it together. And I think that for the partner, just reassuring them, for the example of fear, when she says, “I’m just so afraid of what’s going to happen.” If he says, “Don’t be afraid,” she is going to feel less heard than when he says, “You know, I’m fearful too. Whatever we do we’re going to be a team.”

I think it’s more when women feel alone or abandoned and the guy doesn’t want to get involved or the close friends or family want them to make all the decisions entirely, that’s where it’s really scary. Because you don’t know, if you get a diagnosis of breast cancer, you don’t know. And what’s most important is that you know you have a team member that loves your body and is as invested in you as you are. And I think that’s a really big deal, many of my couples, the woman feels so abandoned and she feels like he doesn’t know how to handle it and so he withdraws and many of them have really saddened, they really have let this diagnosis ruin their real life.

They tell themselves these things like, “I’ll never be sexy again,” or “He’ll never love me or desire me the same.”

And I think there’s a lot of guilt. If you think about it, every woman has said things or thought things about other women, and she knew it was wrong, but you thought it and now it’s you. Anytime you have vulnerability, many of the women I’ve seen have had something like, abortions or over-drank or over-smoked, or whatever, and their doctor alludes to that, without knowing. He says, “Your bad habits may have contributed to this.” Or, even if the doctor doesn’t allude to it, their own inner critic is, and they feel like they are being paid back.

I think there’s just so much confusion, Dr. Barb, they don’t know. They look to other people who have had total mastectomies and, at that point, we really have to listen to the woman and what she thinks she can live with, because we are all very individual.

Barb: Those are interesting points that I think we probably don’t often consider when we’re having conversations, important conversations with patients, so it’s insightful for you to mention that and provide those words.

I remember you talking about, specifically, women needing to reestablish comfort with touch –

Mary Jo: Yes, touch is a big thing.

Barb: Tell me how you might help someone navigate that specifically. And when we talk about intimacy we talk about the senses, and all of the senses – trying to engage all of the senses in having an intimate relationship. I think again, in patients who have treatment and in some cases surgery and/or radiation, and maybe complications of chemotherapy with peripheral neuropathy or something, I’m intrigued by that sense of touch and what it can provide and how it can draw couples together. So, how would you advise someone in that?

Mary Jo: I think the most important thing is, and I think the most important thing maybe that the partner can help them with, is starting to think – you know most women don’t want the scar to be seen. They really haven’t made friends with it yet, and it reminds them, it looks brutal at first, this is how they describe it. It looks – it’s just the worst thing they can... Most of the cancer centers do have websites where you can buy camisoles where basically, it’s after surgery and they are very sexual, they basically draw attention to the shoulders and to the form of the woman, but they don’t irritate the skin if the woman has had cancer or radiation or anything like that. And I think what I really love about them, is they are so feminine, they give her back a sense of “she as a woman” and many times couples will say, “I can’t take that off; I think I could let him touch me, but I can’t take the camisole off.”

And I caution couples, I say, you know, do that! Go ahead and do that, that’s perfectly fine. And you know, touching when it first begins after cancer, many times couples have their clothes on and... they are just snuggling. You just get used to touching the neck again, and touching the upper chest. Because there is numbness and it often doesn’t go away many times for up to six months or a year. I have clients who tell me it’s still numb. Plus you want to be very tender about it, because remember, they are still healing; they may have been through radiation as well as chemo, and that skin is still tender, it’s different.

We know that when people are touched it resonates with every cell in their bodies.I like the idea of starting with just caressing, touching, and no contact of the genitals. And, what you wear is not as important as you feel each other’s touch on your skin. We know that when people are touched, it resonates with every cell in their body. Their physical self, it changes. Immediately it changes their immune system, it changes their cardiac rhythms, usually their breathing slows down. And this has been well studied in research study after study. So you know, a simple thing of holding their hands. At all the appointments, holding their hands or take every opportunity you can to touch your partner. And some people aren’t real touchy, some women feel a little bit of a need to protect themselves, so don’t give them a hug that’s going to be felt negatively. You always want your touch to be positive.

Barb: And I think that’s an important message to our non-cancer patients as well – I think your emphasis on the health benefits of what human touch can bring. It doesn’t always need to be leading to a sexual encounter. It can just be very intimate by, as you mentioned, at the right time extending a touch or holding a hand. And I think it’s an important point again, for any relationship to have that reinforced.

Mary Jo: Absolutely. You know, Barb, right now we’re in Houston. We’re going through a lot with survivors from the storm. And these people have really been traumatized emotionally. What we’re finding when we go to the shelters, and especially as psychologists, our main job is just to take their hand and touch them. And you know, usually when you take someone’s hand they let go; these people they usually do not let go. That tells me the symbolicalness; you can give medicine, you can give an antidepressant and antianxiety, but nothing works like staying silent and touching someone. And even if it’s like you feel totally helpless, being courageous enough to extend yourself, to be there, your presence after breast cancer is so, so important. And you don’t have to fill it, you know.

Barb: Right, so you were providing a lifeline, in a way, to those individuals who just needed that contact of someone who expressed concern and care for them.

Mary Jo: Right, exactly.

Barb: Are there any exercises you would recommend for couples to practice after a cancer diagnosis or any serious illness or specifically a cancer diagnosis?

Mary Jo: I think the most important things, really – and I call it this with my clients – I say,

“This is your opportunity in your relationship to basically experiment. You’re going to do self exploration.” And what’s interesting is that it doesn’t just happen to the woman that was healing.

What’s interesting is that so many couples can focus on orgasm, and they get focused on completing an act of sex. Everybody is too busy for their relationship.

Cancer is a wake-up call. When you hear it, you realize, okay, I’m going back to the basics of my relationships. And I start very, very slowly, and I always say, “The objective is not intercourse. You can take your time with that.” The cancer centers I work and align with, they are all on board with this, that it’s not sexual intercourse that’s going to help people heal after breast cancer. It's the connection, it's the intimacy, taking time to just briefly explore each other again. With touch, talk to them, how does that make you feel? And you know the woman can touch her partner, too, the breast cancer patient is often a giver, and that’s one thing they miss. They feel like they’ve been taken care of for so long, they want to give to their partner. No matter who is touching, it feels good, it’s a form of intimacy, it’s a form of caring.

And I walk them through a very – like, step one is where you just kind of set it up. You don’t need to be unclothed, you might have something light on, like a camisole and for the guys, boxers, and you’re just lying in bed or on a comfortable chair together and maybe even watching a movie or love story that you both like and remember, or a cartoon, a lot of people like to watch funny things. Just start casually like that, there is no goal. The goal is not to, basically, see the scar. The goal is to embrace the whole woman, and that includes the scar. And to learn that it’s still very much a part of her body and an integral part of her story, it makes her richer, it makes her more valuable to you.

Barb: Well, those are really great words to help individuals and couples to hopefully more successfully navigate this. I think that from the medical side of the equation, I’m not sure in the midst of oncology treatments and protocols and office appointments and the scheduling that needs to go on, I don’t know that these important conversations are always integrated into patients’ care plans. But I certainly hope that individuals can try to make it a priority to have a conversation with their caregivers around how to best navigate this, and how to maintain their close intimate relationships.

Often on the medical side, it's pretty late in the game when they present to me often with pain or  with loss of arousal or lack of orgasm. Unfortunately, I think sometimes the relationship is pretty fractured by the time they reach out to seek treatment. I think it would be interesting to think about integrating someone like yourself early into the process, maybe even before a surgical intervention as they try to wrap their head around what the future is going to look like.

So many of these women are surviving now. I think I just read that somewhere around 90 percent of our breast cancer patients are surviving their disease, which is great. But, we want them to survive with as full of a life as possible.

Mary Jo: Yes, and you know, I really bring in the couple. I bring in the other partner, because I’ve seen much better outcomes when the partner shares the crisis. He or she doesn’t let their wife, or whatever, they don’t let them go through it alone.

I've seen much better outcomes when the partner shares the crisis.So, in other words, when they say, “I have cancer,” the partner says, “No, we have cancer. We have cancer and we’re going to get through it together.” Because many of those problems that the woman is thinking of are like, you know, “I can’t take romantic vacations because I’ve got to be here for chemo. I have financial concerns. Basically I’m anxious about the medical care. I’m going to have body disfigurement. And I’m stressed about leaving the kids.” If they have children they are worried about who will care of them.

When their partner is like, “Well, you know what? We’re doing this together,” he takes on, or she takes on what they can for the partner who is going through the treatment. Because cancer is heavy on one person, but for two people, cancer is a lot lighter. And it has a way of binding two people together than it does just one. So when I see people, I’m all very much focused on who’s the other person. If it’s a family member, let’s get them in here, or a good friend, let’s get them in here. Because we can do so much more when we are helping two people struggling with breast cancer than only one.

Barb: I can imagine that. Thanks again, Mary Jo! As we conclude the discussion about intimacy and cancer, it’s always interesting for me to hear from the person I’m interviewing, more broadly, about their interests in life. So my question for you is, where do you find richness in your life?

Mary Jo: Oh, that’s a really good question! You know my whole mission is about building an incredible platform to promote healthy relationships. And so where I’m getting so much joy, is when I put something out, when I create something, hearing people say how it’s helped them in their life.

I had a cerebral aneurysm in 2003 that almost killed me. I had 60 ccs of blood in my head.

I used to be a nurse, and you’re a physician, and you know what that should have done, but it didn’t. I was lying in the hospital with all that blood in my head, and they were trying to figure out what had happened because you couldn’t even see, like to treat it. It was just full.

Enriching other people's lives just turns me on.I just keep thinking back since then, that was my wake-up call. And I think that in all of our lives we have the opportunity God gives us with a wake-up call. And what you do from that point on is really, really different. And so I encourage all my patients, listen, this may be your wake-up call: What do you want to change? What do you want to give back? You’re going to live with this illness, but what is the lesson? Because if you don’t learn or change at all, you’ve missed a golden opportunity. And I really try to promote them experimenting in their relationships to try new things – you may never have taken a bath together, then start doing that. Because that really stimulates conversation. You’re two people sitting in a nice warm bath, and you maybe have a cup of tea and just talk, maybe about where you’re at. Or, escape cancer completely and talk about where you want to be in one year, or five years.

I think enriching other people's lives just turns me on. And I don’t know how else to say it.

Barb: Well, that was stated perfectly and beautifully. You are always an inspiration to me, Mary Jo, when I hear you speak with passion about your gifts and skills and how you can improve other people’s relationships. I want to thank you for what you do and for the time you’ve spent here today.

Mary Jo: Thank you so much. It’s always great talking to you. You inspire me, every time after I leave you with whatever we do, I end up going, “Man! I’m going to try that,” or “I want to do that!”

You are a really influential person. I’m really grateful to have you as a friend.

Barb: Thank you, Mary Jo.


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