The Vagina Dialog--What No One Tells Women Who are Caregivers

There are so many things that go unspoken in the realm of couples and cancer care. If you are a female caregiver and you are caring for an intimate partner or spouse pay attention to this:  You need to keep dilating your vagina.

I was going to use gentler language but really, isn’t euphemism half the problem in Cancer Land? And I didn’t want to use baby words for vagina. I mean, how many times do you have to see “The Vagina Monologues” to know that women are powerful when we call things (our own body parts) by their correct name.

So, if your male partner/lover has cancer there are some things that you need to do that do not involve binders or calendars or tote bags. Your partner may have surgery and chemo and maybe radiation, and so, no, he’s not in the mood for sex and neither are you. Yes, you can have oral sex—for you and for him. And manual stimulation is also very nice. But for all kinds of reasons you might not have intercourse for weeks or months.

And all that time you might think, “Well hey, when he feels better we are going to get it on!” You might imagine the night when it’s possible and he’s ready and you have new lingerie and he has new meds, and the setting is just right—there is arousal and humor in equal measure, and so you turn down the lights and begin.

But all of a sudden no one is laughing and you might even be crying because trying to have intercourse hurts! And it’s you who is hurting not him because now you are too tight. So, you think, a little foreplay and some lube will fix that. But it doesn’t. Odds are good you will be sad, mad maybe scared, embarrassed and definitely confused.

Who saw that coming? If you are over 45 and you do not have intercourse or use a dildo inside your vagina for any stretch of time then you are not stretching it and any attempt at penetration is going to hurt like hell.

So, you think, “This is what I need to think about while I’m worried about his life and our healthcare bills?” And the answer is, “Yes.” Yes, if you want your sex life to return, and yes, if you want to feel that yummy good feeling again. And yes, because a healthy vagina is important. Vaginal atrophy is no joke. It happens to all women over 50—with or without partners. It happens to happily married couples who skip sex for too long, or who fall out of the intercourse habit. (It happens)  and it happens to couples in CancerLand and you then have heartbreak on top of heath scare—you want to do “it” but you can’t.

So how do you keep your vagina elastic and ready? Well, use your imagination or, even better; use a set of vaginal dilators. No porn shop needed. They are a medical product and your doctor will order them for you, or if you want a faster and cheaper solution: buy a set online. (You can even buy them on Amazon).

There is a link below to one company and an additional link to Sloan Kettering that gives advice on how to use the dilators. But you can also Google “Vaginal dilators” and you will see products from many companies that sell medically approved sets. You need a set that provides several dilators that vary in diameter because getting “fit” is a process. If you have been without intercourse for a long time you will want to use the teeny one (like your little finger) first and then gradually progress to one that is, let’s say, more like your partner.

Please don’t blush or brush this advice away. The older you are the longer it will take to return your vagina to its earlier elasticity. That means the sooner you begin the sooner you will feel like a confidant and relaxed lover again. And here’s a bonus: Doing vaginal dilation plus your Kegels means better orgasms for you.

And that’s a prize you get to keep.

Now, look at this link to Sloan Kettering:
http://www.mskcc.org/cancer-care/patient-education/resources/how-use-vaginal-dilator

http://www.soulsource.com/products/silicone-vaginal-dilators/

Helping Employees Who Are Caregivers

Letting Go into Tigers

What are we now but voices
who promise each other a life
neither one can deliver
not for lack of wanting
but wanting won’t make it so
We cling to a vine
at the cliff’s edge.
There are tigers above
and below. Let us love
one another and let go.

-Eliza Griswold

Rethinking Early Cancer Detection

For so long we have been taught that early detection was the answer. The earlier the better and the earlier the more lives saved. Now, it seems, that may not be true. As I have reported here before (We All Have Cancer-August 7th) we all, in fact, have cancer cells in our bodies all the time.

The dilemma is that the earlier we detect the presence of cancer cells the faster we get "treated" (surgery, chemo, radiation) and the faster we get disabled by cancer's many treatments. We do know that many cancer patients die of the treatment not the cancer. So what do you do? And now what should your doctor do?

This is complicated science and complicated ethics. There is now enough longitudinal study to show that 30% of women diagnosed with breast cancer would not have died even without any treatment. (The slow growing cancers) . Ok, maybe that's worth the risk versus loss. But 60% of prostate cancer is over diagnosed--meaning those men may have had disabling treatments that were unnecessary.

But how do you know? What is your risk quotient?

There is some complicated science here. As if cancer isn't complicated enough. So this article in Sunday's Wall Street Journal is worth reading. And sharing. And discussing. It may help you ask more and better questions of your treatment team. It might help you manage the fear.

The link below is to the full article. If you have any trouble with the link simply Google: "It's Time to Rethink Early Cancer Detection". Wall Street Journal.

As the article says, language is a big factor. We haven't changed our definition of cancer in many years even though medicine has progressed. And the C word scares us into acting fast when sometimes it seems we should think more slowly.

http://online.wsj.com/articles/some-cancer-experts-see-overdiagnosis-and-question-emphasis-on-early-detection-1410724838?tesla=y&mod=WSJ_business_IndustryNews_DHC&mg=reno64-wsj&url=http://online.wsj.com/article/SB10001424052970203523204580113491950100232.html?mod=WSJ_business_IndustryNews_DHC

More About the Book: AfterShock

A few days ago I wrote about the book, AfterShock by Jessie Gruman, Ph.D. It is such a perfect handbook and bedside/tote bag companion for day one to day 100 of any serious health diagnosis.

If you or a loved one gets bad news about cancer, heart disease, stroke, ALS, MS etc. This might be the best, first thing to read. The first chapter is on shock and can help you normalize—and manage –the unmanageable feelings and crazy thinking.

Each chapter is short—therefore readable by someone in shock or crisis, and her language is straight. She does not use the word “cuddle” once. She explains what to ask the doc, what to ask the nurse, what to ask your family and what to care about and what to ignore in the short run.

AfterShock has a chapter on work: what to say, who to tell, how to proceed with Human Resources, and what your situation may be like from the HR and coworker perspective. It helps to know that.

One of my favorite lists that Gruman includes is the Personal Health Kit. I love seeing this here because it took me a year to get my chemo/caregiver kit just right. This is the bag (shoulder straps please) you will take to every doc appointment, test, chemo visit and lab. In addition to the obvious medical stuff you include your wrapped candy, treats, pens, book, pashmina, cardigan, phone list (better than your phone directory), phone charger, and sunglasses. (Yep, at least once you’ll need the sunglasses and you will have them right there.)

As I mentioned the other day, this is a book to buy and have on hand. If you are over 40 someone you know will get bad medical news this year—friend, neighbor, co-worker, family member. And you will have the perfect thing to give them on their first day of after shock.

What to Do When You Get Really Bad News

You may remember how you heard it.

 Were you in the hospital? A doctor’s office? Did you get a phone call? Maybe it was well and compassionately done, or maybe the doctor fumbled the news and blurted out your diagnosis or prognosis.

What so many people have said was how quickly the fog descended. They remember the dissociation and fear flowing on top of reason. When I received my cancer diagnosis I was young (in my twenties) and alone and massively in denial. I was more concerned that my married “boy friend” not know about my health issues. I definitely did not have a list of questions or a notebook or a plan.

When John got his preliminary cancer diagnosis I was in the curtained room of the medical suite, and when he got the definitive diagnosis of Stage Four cancer I was there in the new surgeon’s office as well. We were both shocked, both times—sure that such a healthy, fit guy with zero symptoms could have such a serious cancer gobbling him up.

I began writing “Love in the Time of Cancer” that year to process my feelings, to document what it was like to be in love and cancer at the same time and to become a new and better resource for others than I had been able to find for us.

You’ve seen here lots of helpful websites, articles and books. Today I want to suggest a book that is new to me that you will likely want to have handy for your family or for a friend or coworker.

The book is called, “After Shock—What to Do When the Doctor Gives You a Devastating Diagnosis.”  The author is Jessie Gruman, Ph.D. She is a scholar, researcher and the founder of the Center for the Advancement of Health—an independent health policy institute.

This is the book I wish I’d had and the book your doctor should hand you but probably didn't. And this is not just a cancer book—the guidelines, checklists and stories are helpful for a diagnosis of heart disease, stroke, multiple sclerosis, ALS—and of course, cancer.

I think this book is also something you can do for a friend or coworker when you have no idea what to do or when boundaries prohibit getting too involved—maybe at work or with an ex etc.

In the next few posts I’ll share some of the highlights and what I think is especially helpful from “After Shock”.

What Playing Golf Taught Me

Golf Lesson

It’s the little things.

Shifting my weight to my right foot. Not dropping my left shoulder. Not lifting my right hip.

Leading with my hands. Trusting that I'll hit the ball. Going for it.
Staying focused.

Laughing.

Sex Lesson
It’s the little things. 

Shifting my attention to his body. Not worrying what he thinks.  Lifting my gaze to him. 

Loving my body. Trusting that it will happen.
Going for it.
Staying focused.

Laughing.