Everything Changes - The Guide to Young Adult Cancer

If my sexual history came with a transcript, you could read that I am anything but a prude.  So in my interview today with Newsweek, why am I so down on the ‘Save the Boobs’ ad campaign that consists exclusively of Canadian MTV host Aliya-Jasmine Sovani (a non-breast cancer patient) strutting her bouncy stuff in a string bikini with the message ‘you know you love them, now save them’?

Supporters of the ad say that being snarky, rebellious, and over the top is how we stake out the territory of the young adult cancer message. But what happens when there is actually no message?  This ad is about breasts.  Not about cancer.  So, are we reverting back to avoiding the C-word because we think it’s too grim to sell our own cause?  Is my cancer just too un-hip, un-revolutionary, un-cool for my peers?  I don’t think so.

What if we keep the gorgeous colors and sensual suspense of the ad, but saw a hottie in a bikini walking only in profile, and when she turns to face forward, we get the lopsided view of her as a breastless young woman with a mastectomy? It would be a racy, educational ad, with a message about why we need breast cancer research funding for young women.

Using sex to sell cancer instead of beer or cars isn’t a brilliant revolutionary branding tactic.  It’s an obvious, easy ad campaign that misrepresents the reality of cancer, and is a slap in the face to men by assuming the only way they can be empathetic to women in pain is by getting off on her breasts.

The ad has received 350,000 You Tube hits.  I suspect the majority of views are replays from guys pleasuring themselves in front of their laptops who still don’t remember what the ad is for; who would likely never flirt with a bald girl in a bar; and who still hope to crawl into bed with Aliya-Jasmine and have no clue that real, 160 pound, size A-cup, 25-year-olds are walking around with prosthetic “ta-tas.”

What do you think?  Do you like the ad?  Is it revolutionary to sell cancer with sex?  Do you know someone with breast cancer and do you feel proud of them when you watch this ad?

Read more about the real lives of young women with breast cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Here she is again, continuing on from Wednesday’s post - the amazing 36 year old ovarian cancer patient from Philly guest blogging about early menopause - Emily Beck.

The Dark Side of the Moon

I am not mystically inclined.  I love The Lord of the Rings as much as the next person, but I have never been a druid (one of my friends in middle school claimed that she was), a sun worshiper or a witch (a college roommate was most assuredly one of these.)  But one of the hardest things to adjust to about menopause has been losing my connection to the cycles of the moon.

For some people it’s probably hard to imagine missing anything about menstruating.  (No more cramps?  No more PMS?  No more tampons? Where do I sign?!?)  But cancer robs us of so much that we take for granted, and for those of us who are sent into either surgically or chemo-induced early menopause, it takes away the primary way in which most of us feel connected to the rhythms of our body, the hormonal cycles we often curse, but which define so much of what it means to be a woman.

In the year-plus before I was diagnosed with ovarian cancer, I was trying to get pregnant.  I had begun the tedious (but fascinating) process of taking my basal body temperature and paying somewhat pathologically close attention to the nature of my vaginal discharge.   Charts and notes related to my menstrual cycle piled up on my night table.  I was peeing on ovulation detectors in the bathroom at my office, and rushing home to demand sex on the appropriate day.  I was, to put it mildly, in tune with my body.

After my hysterectomy, it was as though the tuner connected to my hormonal cycles broadcast nothing but static.  Without the signs to which I had grown accustomed (tender breasts, the changing texture of my discharge, and of course the thrills of a monthly period), I suddenly felt unmoored – disconnected from my woman-ness, and from the cycles of nature (the moon, the tide) that I had always associated with my monthly hormonal evolution.

I remember distinctly a stretch of time, probably during college, when the first day of my period continually fell on the same day as the full moon.  Suddenly, I had a new sense of the ways in which my body and the experience of being a woman connected me with nature.  It was pretty damn cool.

Now, over a year and a half post-hysterectomy, I am still searching for new ways to feel connected to the earth and to stay aware of my body’s rhythms.  The patterns are new, but the goal is the same:  to stay in touch with the physical essence of being a woman.

Have you gone through early menopause?  Does it make you feel like you are missing part of your womanhood?  How have you adapted?  Any tips of suggestions?

Check out It Girl, a chapter in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, in which Mary Ann talks about feeling the loss of what she always considered to be her womanhood.

This post is much longer than usual but is so raw, eloquent, and well worth taking the time to read.  Leslie Rott is a 23 year-old lupus patient and grad student at University of Michigan.  She’s the creator of Getting Closer To Myself blog. Take it away Leslie:

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read the book Everything Changes in which Kairol writes: “In my first two years of living with cancer, the number of men I slept with had more than doubled”.

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes Wafa’a, a young adult cancer patient: “Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either.”

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Another patient in Everything Changes says: “Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time.”

Kairol herself, says: “[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face”.

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

Kairol writes “[If] a broken heart caused cancer [or lupus, or any other disease] […]”, then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.

Are you as blown away by Leslie as I am?  What parts of her writing could you relate to?  Has your intimate life changed dramatically since being diagnosed with an illness?

For practical tips and resources on having sex with illness read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

“If I had a message to the men of the world who have rejected women with cancer it would be f*** you! No. You’re an idiot. No you’re just selfish. It’s so pathetic- do these men not think that they could get sick some day too? It is just bad karma.”

These words spouted from Melissa Sorenson’s mouth, to my tape recorder, to the pages of my book Everything Changes. I high-five her all the way. But it’s not just a message to men. Plenty of women have rejected guys with cancer too.

Diagnosed with rectal cancer at 41, James Buchanan writes about cancer and dating. Gas eruptions on a coffee date; a woman who was fine with cancer but not his colostomy bag; and finally Lesleigh, who was up for both. This is a great description of their first time in bed:

“We undressed and climbed into her bed, but cancer had one more ‘f*** you’ in store for me. Hidden beneath the pain of the radiation and surgery and the sickness of chemo was damage to the nerves necessary to achieve an erection. My body and mind wanted her frantically; my soul silently screamed in embarrassment and anguish.

As I would learn later, these difficulties were an on-again-off-again problem that could be cured with a pill when necessary. But for that night, I held her in quiet sorrow. I was convinced that my life would never be whole again, that this relationship was nothing more than a promising meal about to be taken away from a starving man.

‘I’m sorry,’ I said. ‘Is it me?,’ she asked. ‘No, not at all, never,’ I replied and then feebly described how my treatment had been so focused on this one area of my body that it was inevitable it would have obliterated the anatomy required to make love to her. Lesleigh rested quietly next me, naked, beautiful and sexy, and my newfound impotence burned hotter than anything I had ever felt in my life. Then she turned and kissed me. I wrapped my arms around her as she curled into my body and we lay together, naked and sad.

Lesleigh and I worked through my cancer and physical infirmities, and as we have progressed and fallen in love we have brought our kids together and established amongst all of this complexity a family based on a healthy and loving relationship. At no point have I doubted Lesleigh’s love for me nor my love for her.”

I love James’ story not just because he and Lesleigh got married in the end, but because it is such a good example of why great communication really matters.

I hear so many cancer dating horror stories. Do you have stories about people who are loving, accepting, communicative? What worked and didn’t work for you with cancer and dating?

Check out the sordid details of my dating life, including a very happy ending, in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

One of the greatest parts of writing my book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, was having complete strangers talk to me about the intimate details of their sex life. Here’s Mary Ann, from Chapter 9 ‘It Girl’:

“From my head to toes, I have been affected by cancer. Every part of my body has changed. I don’t feel sexy or female. I feel mutilated. I feel different, like an it. Feeling attractive goes into and is combined with feeling sexy, which might put you in the mood. Usually, I don’t feel like I’m in that mood. When you have been married for nine months, people think you are making love every night. I feel like we should be engaged in it all the time, and we are not.”

As young adult cancer survivors, we’re on hormonal roller coasters, missing body parts, wrestling with anxiety, reacting to medications, treatments, and transplants, and managing our ever fluctuating self image. These are not the easiest ingredients for a smooth sex life and it’s time we started talking about it and figuring out how to make sex work better for us.

Tonight, Monday, June 8th, 9 PM, EST is the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We’ll have two sexperts - Sage Bolte and Sueann Marks, on air focusing for an entire hour on cancer and sex. We’ll also be giving away to listeners three free copies of The Guide To Getting It On.

If you have any questions you want asked on air about sex and cancer, it is not too late to leave them in the comment section of this blog post (remember, they can be anonymous). And thanks to you who have already sent me your juicy questions!

What have you always wanted to ask about sex and cancer? Have you ever talked to a sex therapist before?  Have you ever brought up sexual issues with your docs?  How did they respond?  Were they educated, informed, embarrassed?

Mark your calendars. Monday, June 8th, 9 PM, EST for the ‘Sex, Sex, and More Sex’ episode of the Stupid Cancer Show. We will have three experts on air focusing for an entire hour on cancer and sex!

I got a great email today from a blog reader who was writing me about some issues down there – mostly feeling like she is popping her cherry every time she has sex with her spouse. These down and dirty sex issues are real problems and we have few forums in which to talk about them and receive expert advice.

So, over the next few weeks, I’m going to request that you leave in the comment section of my blog questions you would like to have read on air. Remember that there is an anonymous option in my comment section, so nobody will ever know who you are and you have carte blache to ask whatever questions you like.

Be as graphic, real, and hardcore as you need to be. Sage Bolte is one of the experts. I interviewed her in my book Everything Changes and believe me – NOTHING is too graphic to discuss with this woman.

We all look forward to reading and hearing your questions!

In my book, I write a lot about being single and jealous of what I called those “married cancer bitches.” I also talk about now being one of them. Cathy Bueti is the author of Breastless in the City, a breast cancer memoir that focuses almost exclusively on dating and love. It hits the shelves tomorrow, so I thought I’d ask her about what it is like to write a whole book about cancer, romance, and intimacy:

What was the most satisfying part of writing Breastless in the City? What was the hardest part? The most satisfying part was knowing the potential my story had to help others. The hardest part was digging up all the emotional stuff that had been hidden away for so long. In some ways it was like reopening old wounds.

If you could turn back the hands on the clock and had control over your fate, would you choose to get a cancer diagnosis? Probably not. However, I am grateful for having gone through it because of what it taught me about myself. It also lead me to my husband and to all of the great people I connected with through the experience.

Did you have body image issues after treatment and how did you deal with them? Hell Yeah! It was very tough to deal with it. A diagnosis of breast cancer especially affects your sexuality so directly. I had to connect more with myself on an inner level in an attempt to separate from the physical stuff so I could see that who I truly am was still present. I still struggle with that.

What adjectives do you use to describe yourself as a patient? Challenging, inquisitive, and unfortunately anxious!

What is your cancer motto? A quote from Emerson I used in my book, “What lies behind us, and what lies before us are tiny matters compared to what lies within us.”

So readers, if you were to write a cancer memoir, how much of your book would focus on aspects of love, dating, relationship, sex, and body image? Have you experienced what Cathy talks about with connecting on an inner level to separate yourself from the physical experience? (I actually did some what more of that before cancer and less since cancer.) What is your cancer motto or three adjectives you use to describe yourself as a cancer patient?

Sunday, on The Group Room radio show, I read excerpts of dating and sex tips from my book, which served as the springboard for conversation between a panel of young adult cancer experts. Listen to the podcast here – it features the orgasmic Stephanie LaRue, fabulous author Cathy Bueti, and creative musician Charlie Lustman (come on, it is kind of funny that a guy named Lustman is talking about sex.)

It was a great conversation. But, now I want to write about issues that weren’t talked about on air – some less spontaneous and vivacious parts of sex and cancer that may or may not be your reality.

When I interviewed patients for my book, I met survivors with
post-traumatic stress disorder who couldn’t stand to have their bodies touched by a lover, partner, or spouse. Others had hormonal shifts that threw them into deep sexual malaise. For some just the stress of dealing with cancer zapped their sexual energy and they hadn’t had sex with their spouse for over a year. This stuff is real and is really hard.

I deal with many of these issues in my book, and while I’d love to hear a dialogue about it on air, it is hard to find survivors willing to publicly expose such private experiences. So I want instead to make use of the ability for you all to comment anonymously, or using your real name, on my blog, to speak out loud about some of your real life experiences of cancer and sex.

Has your cancer prevented you from having sex for long periods of time? Are you embarrassed by your body or hindered by medical devices? Has PTSD spilled over into your sex life? Have you had the opposite problem of being such a horn dog that you wanted to hump everything in sight and what was that like? (I’ll tell you from personal experience that it isn’t all it is cracked up to be!) How did you handle these sexual issues? Is there a comfortable place or person you can talk to about this stuff or do you just keep it inside? If you have a partner, does it drive a wedge in your relationship or have you grown closer? What advice or hope do you have to give to others in this situation?