What Makes a Woman?

what-makes-a-womanWhen I was very young, my mother read to me the old nursery rhyme, “What Are Little Boys Made Of?” Little girls are made of “sugar and spice and everything nice.”

But what about women?

Those of us with breast cancer face many difficult questions, including treatment and surgery options. A part of this, of course, is reconstruction.

This is a very personal decision, and it is based on a variety of factors. As far as my own choice, it was made for me. I was strongly advised against reconstruction due to the type of cancer that I am currently fighting and the particular genetic mutation that led to this cancer. Considering these risks, I reluctantly agreed that I would not have reconstruction.

Perhaps it is just me, but going through this latest bout of cancer, I have noticed more and more often our society’s emphasis on breasts. The focus on this part of a woman’s body becomes all too clear as my upcoming surgery date draws closer. Indeed, I have frequently wondered, “What makes a woman in our society?”

Generally, the basis for being a woman seems to lie either in childbearing or sexuality. Whether it is women’s fashion or blogs about motherhood, these two bases for womanhood are dominant in our culture. Even some breast cancer charities focus on breasts–not on the women themselves–with their sexualized slogans such as “Save the Tatas!”

What does this mean for those of us who have never had children and who will soon be living “flat“? What happens when you are desperate to save your life, and in order to do so, your breasts must be sacrificed?

I have lived with these questions every day lately. And I was confronted with it head on last night during a conversation about avatars in Second Life. My husband and a friend were discussing men who choose to have female avatars in this virtual world. The friend pondered this for awhile and then jokingly said, “Who wouldn’t want breasts if they could have them!”

Who wouldn’t want breasts if they could have them? Indeed.

My heart sunk as I realized the implications of this and knew how society would view me after my surgery. My husband hugged me later and apologized for the trend of that conversation.

I still wonder, though, about life after my upcoming surgeries. Sometimes, I feel I don’t have the courage to live through this. Reading more in Ann Voskamp’s book, The Broken Way, I found these words:

“God’s mercies are new every morning–not as an obligation to you, but as an affirmation of you….I’m the broken…and I’m the beloved. Were there more healing words to be heard in the universe? Was there a more soothing balm for all my brokenness?”

Right now, the belief that I am loved by Him keeps me going and gives me the courage to move forward. Redefining what makes a woman not based on what society says, but rather our identity as His beloved.

Do I feel courageous? No, I feel very weak. And it still hurts to think about all of this. I’m trying to trust, praying that God will strengthen me enough to live, truly live through all that lies ahead.

ForĀ  more information on going through mastectomy (either single or bilateral) without reconstruction:

Living without Breasts

“Going Flat” after Breast Cancer

Flat & Fabulous on Facebook

Turning on the Light

turning-on-the-lightFor the past several weeks, my reading has tended toward fiction, generally lighter fare selected from Kindle’s seemingly endless supply. Truly I love my Kindle for that reason. What bookworm wouldn’t?

Although an occasional escape into fiction-land can be a positive thing, when it is continual it is probably not so good. As for me, I’ve most likely been on the not-so-healthy side for a bit. Exchanging my storyline for a fictional character’s seemed the best choice at the time.

But today, during our holiday of Thanksgiving, I picked up a book about brokenness. Turning the pages of Ann Voskamp’s The Broken Way, I felt I was reading the words of someone who understands what it’s like to want to escape, to trade my own dramatic tension for someone else’s.

Listening to the noise of a football game and sipping some water, I read a description of my past several weeks:

“I wonder if all the bad brokenness in the world begins with the act of forgetting–forgetting God is enough, forgetting what He gives is good enough, forgetting there’s always more than enough and that we can live into an intimate communion. Forgetting is kin to fear.”

I understand the forgetting and the rush of fear all too well these days. Why is it that we can’t seem to do what we ought to do? Why do we eat unhealthy foods and forget to exercise? Or, why do we run from God into books and music and any other distractions the world might offer?

I don’t have an answer for these or any other questions really. Reading further in Voskamp’s book, I found this push toward a healthier view:

“The way you always find the light in the dark is to make your hand reach out.”

I thought of my groping in the darkness of fear even as I had given up reading scripture and praying. Isn’t this how life can be, though? We continually fall and then search for ways to get back up, grasp for what will make us stronger and less likely to fall. Whether it is good or bad is our choice. But we keep going, somehow.

Ah, but it is the living that can sometimes trip us up. And how we live–whether in fear or otherwise–can possibly shine the light for others.

Voskamp’s words in the very first chapter made me wonder about my own life right now:

“Not one thing in your life is more important than figuring out how to live in the face of unspoken pain.”

Yes. How do we live with all the pain we carry around day after day? And when life throws you down in the mud–whether it is a divorce, job loss, illness, or a multitude of other problems–how do we continue to live? Will it be with fear and bitterness? Or thanksgiving?

I admit I’m not the role model for the perfect cancer patient. I’m angry far too often and have thrown myself numerous pity parties. Honestly, it’s amazing that anyone puts up with me right now. (Maybe that’s why I hang out with cats a lot nowadays.)

But, perhaps being real about my emotions and struggles while going through cancer treatment might just show another that they’re not the only one feeling this way. That there will be days–weeks even–when you feel you can’t go on.

But the days pass, and occasionally we find a little bit of light somewhere, like in a book. A bit of hope that someone has left for others who are still groping around in the dark.

Nothing has changed in my life since yesterday. I still have cancer and still face more surgery and more treatment. But I’m going to pick myself up today and start doing some of those things I should have been doing all along. Reading scripture, praying… I know I’ll fall at some point, but I’ll look for a speck of hope while I’m down on the ground.

If you’re struggling today, please know you’re not alone. There are a lot of us down here in the dust, trying to stand again.

Wandering in Thanksgiving-land

ampere-and-volta-with-frameNot all who wander are lost.

I’ve seen this phrase posted everywhere online, whether it is Facebook, a message board, or even in Second Life. It seems to resonate with everyone from wannabe hipsters to aging hippies.

For the past month or so, I’ve been wandering in my own spiritual desert, and honestly, I have been lost. I’ve quit praying or reading scripture. Everything–including me–seems dried up like the leaves that litter our front lawn.

Now in this in-between time of treatment, I’m finding it even harder to make it day by day. The structure of my weeks–once taken up by chemo and meds and doctor visits and everything–has disappeared suddenly, leaving me feeling oddly empty. Because the waiting for what comes next is sometimes harder than fighting.

Especially when you’re already wandering in your mind and heart. Days keep passing, but that oasis of spiritual clarity remains a mirage.

And now it is almost Thanksgiving. I see my friends’ Facebook posts about the upcoming holiday feast and wonder about taking my seat at the table this year. Tomorrow will be a day of food and family and noise and gratitude.

Do I feel grateful?

My mind says yes, but my feelings are lagging behind. And celebrating this year? I truly don’t know if I can belly up to the table full of trimmings and smile with the others. This holiday of waiting will be followed by a Christmas-time where I will be recovering from surgery. My life has been up-ended, and it still lies teetering on the edge of normality.

So what is a wandering fool supposed to do in this happy time of the year? Maybe search for those bits of life to be grateful for?

There have been blessings along the way. Here are just a few of them:

  • The Underbelly published one of my blog posts as an article on their website. I’m so incredibly honored that this amazing group of ladies chose to include my writing on their site.
  • I received a Compassion Bag from Compassion That Compels, a great organization that faithfully serves cancer patients.
  • The two kittens that we rescued on a hot summer night right as my life was beginning to go topsy-turvy continue to liven up our household. The smaller one is quite a “scrapper” and loves to get into trouble. And the larger one, the kitten with the gloriously fluffy bottom, enjoys tummy rubs and food.

I don’t know how I’ll feel tomorrow about life and cancer and whatnot. Perhaps my wandering will have ended and a rush of happiness and peace will take its place.

Perhaps…or maybe the wandering is something that is needed. That maybe when I get so down and dirty and just plain tired, I’ll look to the only One who can end my dusty days.

Despite my current feelings about the holiday, I hope all of my American friends have a great Thanksgiving tomorrow. I’ll leave you with another picture of my fluffy, lovable, huggable kitty.

ampere-and-tweety-with-frame

On Being Rare

on-being-rareBelieve me, I’ve become used to doctors being unsure about what’s going on with me. Whether it is an overly large tumor or simply not recovering from an infection, doctors of all backgrounds have often been confused when facing me on an examination table.

But now I sometimes feel a bit like a carnival attraction. I can almost hear the carnival barker saying, “Step right up! See the fabulous and amazing PTEN! A rarity in the medical world!”

(I added the “fabulous and amazing” part. Might as well be fabulous and amazing if I’m going to be rare, right?)

Anyway, after my final chemo treatment this week, I met with my radiation oncologist on Friday. She is actually the radiation oncologist who treated my first cancer in 2004, and I am so happy that she is still practicing. She is truly a caring and very intelligent doctor.

We discussed the possibility of my having radiation treatment for a second time. She looked at my reports from twelve years ago and talked about my current cancer. Modern medicine had indeed cured the original triple negative cancer from 2004, but the PTEN mutation has reared its ugly head and produced a different, totally new cancer. Doctors–as well as myself, for that matter–expect a recurrence, but certainly not a new cancer after a length of time in which most patients are declared cancer free.

Again I heard, “Honestly, you just don’t see this happen!”

Of course, one of the major considerations of the treatment is the PTEN mutation. When I first saw her in 2004, this was unknown. My BRCA test was negative, and so nothing more was said about the cancer being hereditary. However, this particular doctor was quite concerned about that possibility due to the particular cluster of cancers in my family history.

And now, twelve years later, we had our answer. As we discussed a second treatment as well as the risks involved, she reassured me that she would bring my case before the hospital’s tumor board and that my case would be thoroughly discussed. I trust her and know that she will care for me in the best way possible.

Behind all of that, though, I detected something else in her questions. Having spent quite a bit of my life around colleges, I could tell there was an element of academic curiosity to all of this. She, along with my other doctors, seem quite excited to find a rare PTEN in their midst. And to get to treat one? Well, that could be a paper in the making.

It is interesting that genetic testing has produced a class of patients like myself. We are the rarities who now sit before doctors who are aware of our particular genetic mutation but still know very little about treating us. Too, we are confronted with paperwork that illustrates elevated risks for cancer–including the risk for breast cancer, which is extremely high–and are asked to make treatment decisions based on those risks, even if there is currently no evidence of disease in that part of our body.

In some ways, I suppose, there is an element of the Wild West to it all. Genetic testing and treatments are still pretty new, and we as the patients with rare syndromes face off with a gunslinger who has more knowledge about us than we do. But indeed we do step out into the street, armed with the treatments available to us and stand in front of our disease.

And that’s courage.

Cancer…Yada, Yada

cancer-yada-yadaIf everything goes well, this week should be a finale of sorts for me. Tomorrow will be my sixth chemo treatment in this series, the final one (hopefully).

After going through cancer treatment and surgery in 2004 and again this year, I am simultaneously bored with my own cancer and thrilled to dive into advocacy at this point.

As for my own story at the moment, I keep thinking that I’m repeating myself in my regular posts. Perhaps I should go the Seinfeld route and make it more succinct…

Question: What’s going on with you?

Me: Oh, you know, I went to the doctor…and you know–Yada, Yada–I have cancer again.

Question: What happens now?

Me: Oh, treatment and surgery, Yada, Yada.

The thought of what will happen next in this particular cancer journey scares me to my bones. I’m not frightened of the surgery per se, but rather the unknown that lies beyond it. The change that is coming no matter how I might turn, or how much I wish to hide.

The thought of using this terrible time in my life for something good keeps me going. Perhaps it is one of those dreams that God puts in our hearts, or just a desperation on my own part to find some reason to keep going.

But maybe there is a reason for all of this. And perhaps I can use my writing–and my pain–to help others through their own fires of change.

I’ve tentatively made contact with the American Cancer Society to become one voice among many to raise awareness for cancer, but particularly hereditary cancer and its relation to rare genetic mutations like PTEN. And I have applied to become an official Second Life blogger for the SL Christmas Expo.

Honestly, I would gladly step out of my storyline at this point and move on to something different, something less painful. But I’m holding on to the possibility that I can make a difference and be an advocate for those rare birds like myself.

Family Stories

family-storiesSome family members are only known through stories partially told, hidden by forgetfulness and secrets unshared.

I thought of my great-grandmother yesterday. She is one of those people for me.

My grandmother grew up on a farm in northern Texas during the Great Depression. It was a large family, with 10+ children born and only 7 surviving. It was a tough life only made worse by illness.

For the longest, I only knew one thing about my great-grandmother. My grandmother didn’t talk about her childhood much, with very little being said about her own mother. The one thing she did tell me was that her mother had been ill.

Apparently at some time during my great-grandmother’s life, her breast began to “harden,” and this sickness traveled down her arm. “Some sort of cancer,” the doctors told them. As the illness progressed, my great-grandmother would sit in her rocking chair at night and scream from the pain. She eventually begged the doctors to amputate her arm, which they did.

At this point in the story, my grandmother stopped and said, “She nursed the rest of the kids with one breast.” I don’t know if the breast was removed as well, but it apparently was completely taken over by this cancer.

That’s really all I knew until both of my grandparents had died. As I sat with an older relative–the daughter of one of my grandmother’s brothers–she began to tell me one of our family secrets.

Her father, Raymond, was the oldest of the seven children who survived. He was also evidently a bit wild. Raymond was a “Jellybean” and refused to follow the rules. And one of those rules that he broke involved my great-grandmother.

According to my relative, my great-grandmother was a well-known faith healer. She didn’t just cure anything, though. Just thrush. But she was effective, I suppose, as one family drove from New York to seek treatment for their child.

When my great-grandmother’s “clients” would arrive, she would take them behind the barn for some privacy. The kids–including Raymond–were supposed to stay away from the area while they were there. Raymond decided to see what was happening one day and was disappointed to find that his mother simply put her hand on the person’s head and uttered prayers.

Honestly, I found the story a bit incredible but found similar tales of healings when I read them in the Foxfire books.

I also wondered about the family driving to Texas from New York. That seemed a bit much to me.

Until yesterday when I realized that my burning mouth and lips, cracked tongue, etc were thrush. Unable to eat anything other than yogurt, I totally understood the family’s desperation for treatment during a time when anti-fungal remedies weren’t simply obtained by a call to a doctor.

As I waited for my own prescription to be filled, I thought about my great-grandmother and her cancer. And honestly, I wished I could have talked with her right then and there. Because sometimes even family members we only know through stories seem to have more in common with us than those who are near.

Although I know the chemo caused my thrush infection, I am thankful that I have access to both. Because the pain of cancer (and thrush) is indescribable. And those who think that “going natural,” “eating x diet,” and “living right” will solve every health problem didn’t grow up with stories of cancer during the Great Depression and one family’s willingness to travel across America to treat a common infection.