Life.Love.Cancer

In this ten-part series, Butterfly Temptress discusses how cancer has affected her life.

If you’d like to make a contribution toward Butterfly Temptress’ ongoing medical treatments, please click the button below. EF will match all donations received through November 18th, 2008.

******

Part III

Long before the diagnosis, long before the seizures and the struggles within my marriage, cancer had completely taken my body over. I was tired and lethargic. I’d gone from working hours upon hours as a nurse to being unable to fix a full meal for our family. Exhaustion had taken hold.

As with many female issues, a common first sign of trouble is bleeding during or after intercourse. It was definitely the case with me, but one day it started and it never stopped. Week after week, pad after pad, I bled. After six weeks I scheduled an appointment with my family physician who promptl referred me to a gynecologist.

My first exam was impossible to do because the bleeding was so bad. The doctor told me that he wanted to prescribe birth control pills for six weeks just to see if they made a difference. So I sucked down a pill every single day for six weeks and went through a super-size packs of sanitary napkins weekly. Still, I bled.

My next appointment came and he said that he was going to try to do an exam, even though the bleeding was profuse. So I endured what had to be one of the most painful exams ever. While he was doing the exam he also decided to do a biopsy, just in case. When I left, I left with a handful of pamphlets and lots of questions.

Ultimately, the tests came back and they did some minor surgeries. We thought that was it. Just some abnormal cells, nothing to be worried about. Life goes on.

Except it didn’t. The bleeding got worse. My skin looked like that of a person who had been dead and embalmed and even felt that way.

Add all of that to the fact that I am fat and well, I guess it comes as no surprise that sex wasn’t happening. I didn’t even want it. My husband didn’t ask for it, I didn’t ask for it, so we just kept floating along, content to have yet one more item off our checklist.

My body had betrayed me. That was what I felt. Instead of working through it, I began to feel sorry for myself. I got out of bed long enough to do the basics, like see the kids off to school and fix dinner. I had no desire to do anything other than that, so I didn’t.

The turning point came only after the diagnosis was made. They had started chemo and radiation and over time the bleeding slowed. Thanks to injections and specific dietary guidelines I was able to regain some energy. I was fat but at least I was able to function a little better than before.

I knew we were on the right path when one afternoon before my husband got home I took a shower and did my make-up. When I met him at the door with a hug and a kiss, no doubt he wondered what I’d done with his wife. Instead of asking, he took me to bed.

From then on we were at it like two teenagers. Quickies in the bathroom. Anal in the shower. A quickie in the office on the floor, then a long slow session before we went to bed. There were weekends when our kids were gone that we didn’t leave our bed. We made love, slept, then woke up and did it all again.

There was an urgency to our lovemaking that had never existed before. I wanted to fit as many positions and experimentations into every second. Memories of a million lives squeezed into one.

That urgency is still there. With sex, with the laughter, and with the moments that can’t be categorized, I am depserate to fill the time with something meaningful. If I can’t leave a part of us behind in a child that we’ve created, then I am bound and determined to leave behind enough memories to last him the rest of his life.

But it’s not just for him.

It’s also for me.

For that moment when there is no more fight left in my body. For that moment when I can’t speak to my family, to my love. For that moment when I have no idea where I’m going and no idea where I have been.

I will close my eyes and let the memories play like my own home movie. The highs and the lows, the times when we were strong and the times when we could have been a little kinder to one another. Those are the moments that will have made us the couple that made it through with the love that endured.

Part II

Even before the scan showed that the cancer had spread to my brain, I guess I knew something had changed. Headaches became more intense and far more frequent than the ones that usually accompanied radiation. I started forgetting things that I would normally never forget. (Anyone who knows me knows that I never forget anything- ever.) Instead of remaining positive, suddenly I was unable to smile or find even the slightest bit of joy in anything. I cried all the time, at any time, often for no reason.

Then there were the seizures. I didn’t know they were seizures. I would fall down the stairs and not remember doing it. I would pass out in the bathroom and wake up with my head against the door at an awkward angle, usually with my pants and underwear around my ankles. At first I didn’t tell my husband because I didn’t want him to worry. Soon enough there was no hiding them and he was taking time off of work to be with me.

The dynamics within our relationship were changing. What started out as an old-fashioned relationship where he was the man of the house and I was the woman who kept him in clean shirts and hot meals soon became old-fashioned in a completely different way. We began ordering more pizza and while I still tried to lay out his clothes for him every morning, it was him that started caring for me.

While we had always showered together on the days he worked from home or on the weekends, it soon became a necessity. He was determined to make sure that I was safe, that in the event that I had a seizure in the shower he would be there to make sure I was ok. He began to wash me from head to toe just as I’d washed him from head to toe every day since we’d moved in together. We were less like lovers every single day and it worried me.

I remember reading somewhere that 75% of marriages fail when one person is diagnosed with a terminal illness. That number haunted me. There were people at the hospital that came in every week to tell us that their spouses had left or brought up divorce. People who were madly in love suddenly weren’t. So, I did what any irrational and completely terrified individual would do; I offered him an out.

If we argued about the kids, I offered him an out. If I had a seizure before he left for work and he called in sick to stay home with me, I picked a fight and said whatever I had to say to make him want to leave. In my heart and in my head I was convinced that we would both be better off if he just skipped to the part where he left. That way, we were covered. If I died, he would be gone so he wouldn’t have to deal with it. If he decided he couldn’t handle my diagnosis, it was a non-issue because I’d already pushed him away. No matter what, there was always the out.

While I don’t remember the exact argument, I remember knowing in my heart that I’d finally pushed him away. I remember that July day when his shoulders slumped and his eyes dimmed. He’d had enough and I’d finally convinced him that I was right. So, he asked me to leave.

Looking back, I suppose I should have been relieved. I should have taken a deep breath and gone quietly. After all, he had finally taken the out that I had been offering all along. Instead, all I could do was cry. As I packed my clothes and comforted my girls, I sobbed. While I called my parents to come and get me, while I tried to think of all the things I’d have to do, while I silently wished for his arms around me, I cried.

When it was time for me to leave, I could see in his eyes that he wanted to take it back. I could tell that he was sorry for the entire argument. I remember wrapping my arms around him and telling him that I would love him forever, whether we were together or not. As I held him, I realized that all along all I had really wanted were his words of reassurance that he wasn’t going anywhere. Instead, I’d pushed him away, pushed him to his breaking point and I was hearing him tell me good-bye.

On the drive to my parents’ house, all I could do was cry. My heart was shattered into a million pieces. The only person who had ever loved me and accepted me was the one person I’d managed to drive away. I didn’t think that it could ever be worked out but I hoped just the same.

That night, before everyone went to bed, I slipped off to use the computer. As I sat in front of the monitor with the cursor blinking on the blank page, I wondered if it would even make a difference. Instead of saying anything that I was thinking or feeling, I simply emailed him and told him that I had arrived safely and signed it as I’d signed every email since I’d met him.

It was a long night. I didn’t sleep and I didn’t want to. I wasn’t in my home, in my bed, with my husband. Sleep wasn’t happening. So I wrote and I cried and I prayed that it would all turn out the way it was supposed to.

When morning came I checked my email. He had replied to my email with short phrases and words that gave no indication of how he was feeling or where we would go from there. I was sad until I read his post script asking if he could call me.

Then I knew we would be ok. I knew in my heart of hearts that this whole cancer thing wouldn’t tear us apart. It would only make us stronger.

******

Part 1

Before I was what I am now, I used to play the ‘What If…?’ game. As a nurse it was a favorite game to play when you spent your life surrounded by illness and death. In the game, I was always so sure of what my actions would be if…I were paralyzed…I was diagnosed with HIV(a very real possibility for anyone in health care professions)…I was told that I was dying of cancer.

So the day finally came that I wasn’t playing the ‘What If…?’ game anymore. I was originally diagnosed with cervical cancer that was so progressed that it has spread to my lymph nodes. The situation wasn’t easy to fix and the treatments were more complex than I’d ever imagined them being. I’d worked with cancer patients. I’d played the game and I was so sure of what I would do, how I would handle everything.

The reality, however, is that I wasn’t sure at all. Somewhere between playing that game and a terminal diagnosis, I’d fallen in love. I’d dealt with my issues and I’d moved from working as a nurse to living my dream of writing for a living. Suddenly all my thoughts and resolutions, my decision to never fight cancer if I were diagnosed, had fallen by the wayside.

Immediately after meeting him I no longer lived my days surrounded by death and illness. Instead, I’d started to live my life surrounded by love. My days were filled with hopes and dreams. The words that I wrote flowed from my fingertips like a river to the sea and I finally believed in myself. At the age of twenty-eight I had found true and unconditional love. And at the age of thirty I was told that it was a temporary thing.

I remember that day, just barely. He picked me up from the hospital and took me home. I waited by the phone for the call. After the curt voice on the other end I was in a state of disbelief. Numb, shocked, I walked up the stairs and crawled into our bed. A million thoughts tumbled around inside my head and I couldn’t make sense of it. I couldn’t breathe and for the longest time, I couldn’t cry. All I could think about were our five children and about how this would affect the people I loved the most.

It wasn’t long before my (then) husband-to-be made his way upstairs. He didn’t say anything at all. He just held me close until I told him what the doctor said. He still held on but he also began to tell me how strong we are, how well we’d do, how quickly we would put this behind us. I wanted to believe him, needed to believe him, so I did. He’d never let me down before.

The day came for chemo and radiation to start. The first round consisted of oral chemotherapy combined with radiation. It was great at keeping us in a holding pattern. Things were no better but then again, they were no worse either. I bounced through it almost without any issues whatsoever. My attitude was positive and I felt that our relationship was fine.

Then the doctor told me that it had stopped working; the cancer had spread to my brain.

************

The Butterfly Temptress is the pen name used by a freelance author who has written and published everything from poetry to video game reviews and guides. In 2005, immediately upon meeting her then boyfriend, she began to keep an on-line journal of their relationship. They are now happily married and residing in Pittsburgh, PA with their five collective children. Her readership grew and in the spring of 2006 she launched her own site.

It was immediately following the launch of TheButterflyTemptress.com that she was originally diagnosed with Stage 4 cervical cancer. Through various tests it was determined to have spread through the lymph system to other parts of her body. Currently she is preparing to undergo treatment for the metastatic glioma of the brain stem that causes regular seizures as well as other symptoms that generally accompany the diagnosis. Though she is living on borrowed time, she remains hopeful that medicine can and will provide a cure for her and the countless others living with cancer.

When originally asked to write for EdenFantasys two years ago, she saw it for the incredible opportunity that it was. Her hope has always been that through her articles and stories, readers can find a bit of themselves. With EdenFantasys she believes that it’s possible for people to take those first steps towards discovering their sexual identity or those steps to keep their sex lives going strong.

If interested, you can reach her via email at thebutterflytemptress@gmail.com.