Sex, Cancer, and the Things We Don’t Say

Okay, this is it. I’m talking about sex again. It was ages ago that I spilled the beans on contracting vaginas, so now I’m back to give you a refresher and talk about an important project. Essentially, AnneMarie over at Chemo Brain Fog is once again going into lightly treaded territory and has decided to take on sexuality. I know—you know—we know this is a hot topic with the lid on tight. Beneath that cover there is serious bubbling happening.

sex talk

I can see the discussion on the rise. There are articles in Huffpost once in a while, bloggers have pulled back the curtain occasionally, and Facing Cancer Together has got stuff in the mix too. So there is a bubbling. Geez, even Dr. Canada once mentioned the usefulness in cuddling. That is all good stuff. Let’s get that pot exploding with conversation.

I admire AnneMarie for tackling this conversation with a large-scale project. Her book idea isn’t just about sharing one experience, it’s about collecting many. So this post has two things: 1) A little bit from me, since that feels fair, and 2) A little bit from her too with more to come on her own blog, later. After reading this, hopefully you move on to 3) A little bit from yourself as you anonymously fill out the survey. There’s one for you and, if they are open, one for your partner too.

(Chances are if you’ve read this far but never had cancer, you’re thinking ‘time to click outta here’ but hey, we are talking sex and that’s engaging. Plus, stress around intimacy can impact you whether or not you have had cancer. Okay, I’m being cancer specific – but it would be so naive to imagine other women and men don’t struggle with their bodies as life happens and things change. So while the survey is for women who have had cancer and their partners, this post is also for you. Thanks for being with us.)

Now for a little bit from me (but only the really embarrassing stuff).

You might know my story of intimacy during and after chemotherapy. Sex drive evaporated, lady parts tightened to the point of impossibility. Or at least, so I thought. After a load of work, and with the return of my estrogen, things improved loads. However, my lower area was never 100% healed. (Mind you, I was the only one who noticed. Zsolt had no complaints!)

pie

A distraction for those who want to skip the ‘details’. Look here! Then go down a couple paragraphs.

BUT then I was diagnosed stage four. The depression itself was a buzz kill, and then I went on Zolodex. This is a drug that essentially stops ovulation. The lack of lady hormones has again broken my vagina. It takes a lot of work for me to feel anything except pain down there. Thankfully I’ve learned to power through the experience (This is S&M in action, people. 50 shades of ‘fuck off cancer’) so that it can also incorporate pleasure, but  sex will never be easy again. Thank God for whipped body butter!

Zsolt and I talk about this, I cry as required, and we then have very intimate experiences together. But it’s hard and I often have a sense of dread toward what was once so awesome.

That is my story and those are my issues. For others it is surgery, chemotherapy, lack of bodily control, cramps from sliced muscles, exhaustion, missing body parts, etc. The point is, this is just my story. Many of you have your own stories. Now, here is a little of AnneMarie’s. I put on my ‘blogger’ hat and interviewed her.  Before we go further, if you want, you can fill her survey right here.  The survey is anonymous.

Now here we go, AnneMarie and her project! WOOOHOO for you AnneMarie!

Catherine (i.e. me, asking her, AnneMarie): Why do you want to write a book about sex and cancer? And how do you know other women/men are struggling with this as well?

The Amazing AnneMarie.

AnneMarie: First, I wanted to see if there was any interest, would others be willing to share their stories.  I attended a support group about body image issues many months ago and the conversation immediately turned to sex.  It was all women and we ranged in age from early 20’s up to age 70.  The room was packed; the conversation was lively and eye-opening.  I realized others are struggling with so many aspects of their sexuality.

It seems the topic is barely discussed.  I don’t want to write a self-help book based solely upon my own experiences.   Compiling stories from many different women is what I believe will make the book helpful to the widest audience.  Women who are single and dating obviously have different concerns than women who married or in committed relationships.

Catherine: Who are you working with for the book (there’s a doctor, right?)

AnneMarie: I’m working with a medical oncologist whose practice includes addressing sexual issues.  The doctor has chosen to remain in the background for now since the collection of the stories and having a true picture of what patients are feeling is crucial.  Interestingly, when the first narratives where shared, I discussed some of what I was reading with the doctor.  Some of the issues being shared were things that were never brought up by patients during their visits with the doctor.  Knowing that made me more determined.  This book may provide insight to our doctors and help them to ask the questions we may be too embarrassed to mention.  The doctors aren’t mind readers.  If we aren’t telling them everything, how can they even attempt to offer us solutions.

 Catherine: Can you share what’s in this survey, and why it matters?

AnneMarie: The survey is short.  All questions are optional.  I ask for age, relationship status, type(s) of surgery, ongoing treatment with tamoxifen or any other “maintenance” medications, disease stage, geographical location.  Those responses help put the remainder of the information into perspective.  For example, if someone lives in a very rural area, I would expect they may not have access to a large number of doctors so they may not have an opportunity to speak to a doctor who is well versed in issues surrounding intimacy or sex.  The most important part of the survey is a personal narrative.  I didn’t want to ask specific questions about sex.  I hope people will share their fears, their feelings or even specific stories that may be helpful for others to hear.

Catherine: There’s a survey specifically for caregivers. What are you hoping to learn from them?

AnneMarie: I am seeking information from caregivers or partners of patients because I think some of our hang-ups are insignificant to our partners.  What I mean is that we may be overwhelmed at the thought of someone seeing our altered bodies and for our partners, they aren’t looking at the scars.  I hope hearing from some of them may help us past our insecurities.  Hearing from partners is a means of breaking down a communication barrier that may exist in many relationships.

Catherine: Is there any personal story you’d feel comfortable sharing around this area?

AnneMarie: I am very insecure about my appearance since my breasts were removed.  Clothed, I’m fine.  I still change with my back to my husband.  My surgery was never an issue to him.  He did everything to assure me I was more than my breasts.

Many months ago, we had serious marital issues that resulted in a separation.  Shortly after the separation, I had to undergo a complete hysterectomy.  The combination of losing all of the rest of my female parts and being separated was one of the lowest points of my life.  This is not something I’ve ever really discussed on my own blog.  We are trying to work things out but it’s been difficult.  The thought of dating and possibly becoming intimate with a man terrified me.  How would I tell a potential partner that I have missing body parts?  Would I expose my chest to anyone or would I insist on remaining partially clothed?  Is there appropriate lingerie?

Having been married for so many years and then, being thrust into the world of dating, it was easier to avoid all of it.  The fact that I was in that situation and instead, just spent time with my female friends, made me realize I sex was becoming an insurmountable problem.  I have an excellent therapist and we discussed this issue so many times.  Intellectually, I know it wouldn’t matter with the right person, but I never got past that fear.  My marriage is still very much in the earliest stages of repair so this is an issue that I may have to face one day and frankly, it terrifies me.

*

Interview over, Thanks AnneMarie!

Now it’s your turn: If you’ve read this far, I reckon you care. So, share your experiences and let’s help one another. Again, you can find the survey, “Share Those Moments” here,  and if you are a partner, you can go over here to fill out your version.

It’s emotional, but it’s also so good to let these things go. There are way more stories that I’ve heard from others that could be shared here, but wouldn’t it be better to tell your story for  yourself?

Good luck. And thank you.

Catherine

It’s my Birthday!

Guess what? Today I’m officially 31 – a word to my thirties: I’m here, I’m in you, and I’m not letting go!

make a wishYesterday was something. Zsolt and I had a follow up appointment with Dr Canada at the hospital, so that pretty much consumed my thoughts. We were going to learn about tumour markers and hear what could be seen on the lung x-ray.

So, we get to the hospital and are pretty much immediately taken into a consultation room. The nurse says she’ll pass me a slip after the talk with Dr Canada so I can book my follow up appointment. And I was like, “Follow up appointment?” in my head. Not aloud. Follow up appointments are never quite the words you want to hear in a consultation room, particularly after the life-shaking news I received last time.

Anyhow, she left and Zsolt and I waited. And waited. And waited. Part of me had been calm going in there, but as the waiting continued another part of me started kicking up and wanted to just leave.

“Let’s leave,” I said to Zsolt, pretending to be joking.

He pretended to laugh.

For some reason I decided to dress nicely for this appointment. Yesterday I was in my high-waist blue skirt, stripped blue t-shirt, and blue canvas shoes. Zsolt was in his red t-shirt, blue jeans and white shoes. Together we looked like the American flag, which I guess was appropriate considering it was July 4th.

Anyhow, just as I’m sliding down in my chair onto the consultation room floor with all the nerves, in walks Dr Canada.

He’s smiling, he says hello, he gives me a hug. (After I sit back up.)

And all along in the back of my mind, as we exchange words and he tells me a little bit about the anxiety he realizes I must be feeling, I just want to know about the tumour markers. Finally he lets us know that the markers looked ‘normal’, and the markers specific to my situation looks rather ‘normal’. And that was great to hear.

The X-ray didn’t show the spots, which probably means they are too small. This, he said, was a bit of a disappointment because now I’ll need to be bounced around in my referrals before we can find someone to actually biopsy the little things. Therefore, that means I need to keep waiting.

Fucking torturous.

And then we talked about possibilities and options and treatments and scary stuff. They may be benign spots that resulted from a lung infection some people in this area can get, so there’s that as a bit of hope. The biopsy will really reveal all.

Some scary things were also said yesterday. Things I already knew, but I guess you never want to hear coming out of a doctor’s mouth. Stuff like breast metastatic cancer isn’t curable (garbage!). Stuff like woman do die from this. Stuff like some women live one or two years while others live many more.

Stuff I don’t want to battle, take on, challenge, fight, deal with, or acknowledge. Stuff I’d rather not have to consider.  (And I think it’s total crap that we are slapped in the face with this ‘no cure’ crap! Science – GET ON THIS ALREADY. Oh, yes, you are. Okay – GO FASTER.)

He also said that if it is metastatic I can basically forget about carrying a child. And if it’s estrogen receptive, I should consider removing my ovaries.

However, we have a bit more hope after that appointment, and small in good no matter what. Small is good. Not being cancer is the best. Let’s shoot for the best!!!

On another note, a happier note, last night I attended a bachelorette party. This is my first every bachelorette party – I didn’t even have a bachelorette party when marrying the Zsoltster.

Dress code said black dresses. Hmm. I paired a black skirt with a black tank top, and said, “good enough!” Can you believe I own no little black ‘going to a club’ dress? I guess I can believe it – black isn’t my best shade.

The party was for an old friend I’ve known since almost always. (She was an excitable, imaginative and trouble-making kid, who I got to see grow up into a beautiful, hilarious, and compassionate woman. You would like her very much.) She and I grew up on the same street, and while we weren’t tied at the hip or anything, it’s been good to have her there to talk to when it’s needed, and I’m sure its visa versa. I’m so entirely happy for her to be marrying such a lovely guy, and think there’s a lifetime of laughter and fun ahead for that couple.

Now, I’m not a natural party girl – I’m kinda the anti-party girl, particularly as of late – so I showed up with my bottle off fizzy water and was quiet in my corner as stories were passed around about the bride-to-be, and quizzes were taken, beads won, salads and Mexican food eaten. I met new people and caught up with friends from high school. :)

It was one of those nights when I could forget about the hard stuff for just a little while, just long enough to laugh and think of how wonderful the world can be for us. So I’m very glad to have gone, very glad to have been there for that moment, and kinda sorry I wasn’t in the mood to dance on any tables – though that really rarely (if ever?) happens anyhow.

Now here is a small miracle I’d love to see happen:  Dr Canada wants to look at my previous post-original-diagnosis CT scan from three years ago. If he sees spots on that scan, then I’m okay because this is probably just a result of that stupid infection people can get. If he doesn’t, then I need to have a biopsy to see what is going on – and that has a long wait time attached to it, plus scary possible implications. I wasn’t sure whether or not to talk about this, but I’ve decided to do so since your good vibes worked last time, so I’m hoping they work again. Please do send some my way, if that’s okay. And in the meanwhile I’m hoping, praying and writing for good results in all areas.

Next week I drop off that CT scan.

Week after I have a bone scan.

We want spots on the original CT scan, and a clear bone scan. That two things would be good. Good would be GOOD.

And, it’d be an awesome birthday present too.

Well shit, that scared me

Oh my goodness, what a day . . . this morning I signed into the Facing Cancer Together twitter account (@cancer2gether) and wrote out a morning tweet. Ultimately it went like this :

Okay Wednesday, be awesome!

But it started out like this:

Okay Wednesday, surprise me!

And then I thought, “well, I just had an MRI so no surprises are necessary.

So I switched it to:

Okay Wednesday, delight me!

And then I thought, “but this isn’t really about me.”

Which is how it ended up at general awesomeness. But I feel somewhat convinced that I beckoned the universe to give me a surprise, and therefore shouldn’t have been at all shocked when the hospital called to arrange a CT scan.

Okay, I had an MRI yesterday. Then today, unexpectedly (without my realizing I’d be sent for one) I was called in for a CT scan. In fact, they called my parents house, so my mom called me, and then I called the hospital. I would have asked the lady at the CT booking when this requisition had been sent in, but she was SO grumpy that I didn’t dare. Instead, I followed up that booking (for tomorrow by the way) with a call to my oncologist’s nurse.

Of course, their first point of contact is always the answering machine. Therefore I left a message along the lines of this:

“Hi, yeah, Catherine here. I’m just wondering whether the CT scan was requested before my MRI or as a result of my MRI. CALL ME BACK, PLEASE.”

Then I tried to work.

Ha!

Tried.

Failed.

Then Zsolt and I went for a walk. We basically said nothing to one another the entire time. I asked Zsolt at one point what he was thinking, and he said, “Nothing really, I’m in a blank space.” So that shows you that he was worried too. Personally, I was thinking: “oh fuck, oh fuck, oh fuck.” And then I started thinking: “If I were to die what would I want to have accomplished?” Which lead me to figure I would want to have a child, if possible, and I would want to publish my fiction novel. That led me to some far-fetched day dreams of crowd-funding to raise money for printing the novel and distribution (apparently I have some traces of business woman inside of me, since even in panic mode I was making this ridiculous plan), and people would probably give because they felt sorry for me and the book would sit on their shelf unread as a memorial to that awesome chick who once was, and maybe is somewhere else beyond whatever we know, but it’d never win a GG, and what the fuck is going on, and oh my God I hope it’s nothing, and holy shit I hope it’s nowhere else in my body . . . etc.

Of course, that reality is always a risk. It’s a risk having had breast cancer. It’s a risk resulting from stopping tamoxifen. IT’S a real life risk. And today I had just the smallest taste of how it would feel to hear more bad news.

The good news: I’ve been living my dream, and don’t hold many regrets. I still WANT to have kids, and WANT to publish my writing, and felt that even when in panic mode. So I’m glad it’s all congruent.

The bad news: This shit can be scary. And it can be real.

Then we came home and I decided to try and be productive. That involved working on a slide show for the local community organization.  Somewhere between deciding on transitions between pictures (fade in, pop up, vortex, flip, conveyor belt, and so on!) the mobile phone rang. It was my doctor’s nurse.

Essentially, she has no idea about this CT scan. No clue! But as for the MRI, here is what she said:

“Your MRI has come back indicating no signs of cancer.”

YES. FUCK YES. HIGH FIVE. WOOOHOO. Oh shit. That was stressful. I need a nap . . .

None of which I said to the nurse. Anyhow, I can therefore assume that this CT scan is just to get a full body impression before I move forward to try and get pregnant, and is not at this moment (and hopefully in no future moment) connected to any sort of recurrence or cancer.

Zsolt and I hugged. I called my mom. But damn it, it was scary. Today brought some awesomeness, but not before delivering a big dose of surprise and panic.

Now I’m on my back porch, and typing this out to you. Hello, how are you doing? The sun is shining after many days of rain, and I have a CT scan tomorrow. Later this month we are going to a cottage . . . and in the meanwhile, my apartment is a compete mess since this is a month were I’m a little out of control, and have therefore lost my ability to tidy.

Life goes on. But geez, does it need to be so dramatic?