I haven't written in a while and it dawned on me today that I have perhaps been subconsciously avoiding it. October, as I am sure you're well aware, is "Breast Cancer Awareness Month," and with all the pinkwashing and pink bashing, I was not sure how to cut through all the noise or if I even had anything of value to add. I also did not think I could write coherently because I have all the feels this month! The 11th was my 31st birthday; one I honestly doubted I'd live to see. The 13th was Metastatic Breast Cancer Awareness Day -- that's right, for the 31 days of Breast Cancer Awareness Month, the terminal kind gets one measly day. Oh, and that day was over shadowed by the bro-tastic No Bra Day. So...mentally I've been a little distracted and torn between trying to advocate and trying to maintain my sanity.
I am also having a difficult time
because what I’ve been wanting to write about for a long while now is on the
subject of sexual health and intimacy. I wanted to write this blog post, like
so many others, with humor to try to make it less awkward. Try as I might
though, I have been unable to be witty, clever, or funny in any of my posts because simply put …breast cancer, and what we as
patients have to endure, is not a joke.
Yet, this month I have been
inundated with “save the ta tas” and “love your boobies” type slogans. Breast
Cancer “Awareness” is a multi-million dollar marketing gold mine and everyone
is cashing in on the gimmicks that trivialize and sexualize the disease. I am
adamantly against these campaigns and the notion that “any awareness is good.”
Rather than point out why these campaigns are damaging and damning to the
cause, however, I want to go ahead and talk about sex; the real unsexy truth about women’s health and
intimacy through cancer treatment.
As a young woman, as a person, I very much still want
to have a sex life. I just turned 31 and for the past 6 months or more I have
had zero libido. I have also found a lack of resources or willingness of
medical professionals to have a discussion about it. And that is not ok.
In many ways, my cancer diagnosis
and treatment have pushed my husband and I to become much more intimate. We
hold hands more often, we look each other in the eye longer, we talk about
everything, and at night
we go to bed much earlier than we used to just to hold one another; to feel
skin against skin. And for that, I am grateful. While our intimacy has
improved, however, our sex life has suffered greatly.
Before cancer, we were very
affectionate and had a super healthy sex life. Even after having the baby, we
still made time for one another and that time often included sex. After my
mastectomy, it was a little jarring at first, but soon enough we were doing
just fine. My drive came to a screeching halt when my ovaries were removed and
I began hormone therapy. Since
my cancer is ER+ and very aggressive, the decision was made to use an aromatase
inhibitor (femara) coupled with ovarian suppression. In other words, estrogen
would be cut off or virtually removed from my body to stop the spread of
disease.
This treatment option showed very
promising results in terms of survival rates, but it is not enough to survive.
I want to thrive. To me, that means managing treatment and side effects to
allow for quality of life. And yes, I see sex as a healthy, natural part of
that life.
The side effects of my treatment
have been chronic muscle and joint pain, osteoporosis, and menopause. My body
hurts All. The. Time. As if that weren’t enough of a turn off, being slammed
into menopause has further drained me physically and emotionally. I experience mood swings and hot
flashes/night sweats regularly, though my oncologist has assured me that these
side effects should diminish over time. Unlike hot flashes though, I was told
to expect vaginal dryness and irritation to worsen over time. No estrogen means
no self-lubrication, which leads to extremely painful intercourse. The most
effective moisturizers and lubricants on the market contain estrogen…which I am
advised not to use. I have found Replens to be somewhat helpful (for anyone in
a similar situation), but it’s just one more thing that I have to remember to
do and my mental fatigue often gets the best of me. Also, it does nothing to
help with the lack in libido.
In the last six months, I can think
of two, maybe three times that my husband and I were able to have sex that
didn’t end in tears. When we try, my husband almost always has to initiate and
I know that is not fair to him. I’m perfectly comfortable with my shirt off,
but it is always disheartening when he touches my chest and I do not feel a
thing. When we start having sex, I feel everything though, and it hurts.
There’s a searing, burning, pain and I cannot stand it. Sometimes I’ll try to
force myself to work through the pain, but I often roll over and cry instead. I
love my husband and I hate that I cannot physically show him that love.
Enter the month of October, and
rather than feel a sense of comradery with all my sisters in pink, I strangely
feel more isolated than ever before. I get anxious when I go to stores and see
all the pink merchandise and the employees sporting the ribbons. The past few
weeks, I have been reliving the news of my diagnosis, the whirlwind of
chemotherapy, the surgeries that left me feeling hollowed out. It’s like PTSD.
It’s no wonder that sex has been difficult to impossible. But it’s so much more
than a mental block. There is a very real physical/physiological problem where
my body just does not work.
At every visit with my oncologist,
I fill out a survey that asks for my level of pain and distress and then asks
me to check off certain things that may be causing the pain/distress. Every
time I have checked off “sex/intimacy” as an issue and every time the medical
assistant shoves the sheet in my chart and it’s never seen nor heard of again.
Last week I had decided that it was
time to get vocal about my concerns. I had recently attended a conference
hosted by Living Beyond Breast Cancer where I learned about Mona
Lisa Touch and I wasn’t going
to leave my oncologist’s office until I had a referral in my hand! He surprised
me and did one better… he pulled out his cell phone and called the OBGYN’s
office that specializes in this new laser therapy and got me in to see her,
that day…right after my appointment with him.
And so we talked…about shooting
lasers into my vagina. Not a conversation I thought I would ever be having.
Mona Lisa Touch uses lasers aimed at
helping the cells make more collagen, which corrects vaginal atrophy and aids
in the production of natural lubrication. The doctor explained that it may not
make my libido come back, but it is a start. I would need three treatments,
spaced six weeks apart, and then one treatment annually for the rest of my life.
In
addition to not being able to help with libido, there is another downfall to
this: Mona Lisa Touch is not covered by insurance. I’ve been having a hard time
accepting this, especially this month. It feels like such a slap in the face to
be one of the thousands of women who are made into sex objects by slogans like
“save second base,” and yet (a) no longer have “second base” and (b) not have
the ability to round the bases to make it home. Not to go all “femi-nazi,” but
I’m sure if this were an issue with men there would be more options that would
indeed be covered by insurance. A certain little blue pill comes to mind.
I
made an appointment, telling myself we’d figure out the financials later. I was
excited and I was hopeful. Then, slowly but surely, doubt started to creep in.
What if it wasn’t really the right treatment for me? What if it didn’t work?
Maybe I should just be content to live in a sexless marriage, so long as I’m
living, right?
In
a moment of self-defeat, I canceled the appointment. That was a week ago. It’s
something I plan to discuss with my doctors further, but for now I need to let
it go. I received news that my white count is critically low again and I am
neutropenic. I have to stop my Ibrance (which I put so much stock into and
convinced myself would be my ‘cure’) and hope my body can rebound. Then maybe
we change the dosage or change the medication to something else that may extend
my life.
This
month, all I can think about is how I am on borrowed time. I want to live and
laugh and love as much as possible. I want to do all the things “normal” people
do, including have sex with my husband. But when I go out and I see all the
pink…I’m reminded that I am different; that everything is different. I’m
writing this because I think it’s important that people know my reality, our
reality, beyond the pink party raging on all over the damn place. Yet, I still
don’t feel like this post is adequate. In my writing, in my bedroom, in my day
to day life I feel completely …impotent. But I know this is the first
step…talking about it. Step two, to be determined. Stay tuned.
For additional information and metastatic breast
cancer awareness please "like" and follow Jenny B. living with MBC on
Facebook at www.facebook.com/JBvsBC.
To make a donation in support of Jen and her family, please visit www.gofundme.com/JBvsBC.
