Life. Love. Caner.- Part IX

I’m not the woman I used to be. Somewhere along the way I feel as if I have matured. Part of me thinks that I may have even chilled out a little bit when it comes to things that don’t make a difference in the big scheme of things.

Gone are the days that I jumped out of bed and made it immediately. No longer do I stress or flip out when there is laundry on the floor of the laundry room for more than a day. I’ve even relaxed enough to allow other people to load the dishwasher, clean the bathroom, and do the grocery shopping.

When I was first diagnosed and started treatments I tried valiantly to do it all. I made the meals, packed the lunches, cleaned the house, and tried like hell to be everything my husband and kids deserved. At the end of the night I was so exhausted that I couldn’t be bothered to walk up the stairs to go to bed. Still, I’d wake up and do it all again.

My husband and I would argue because I wouldn’t let him do anything. He struggled with watching the woman he loved pushing herself beyond her limits and I struggled to be the wife I thought he wanted and needed. It took a major argument and pneumonia for me to let go and let someone else.

In the six weeks that he has been home with me we’ve argued only twice. I really thought that we’d kill one another by the time a week had passed but he was convinced that this was just what we both needed. He knew better than I what a difference it would make for both of us as individuals and as a couple.

Oh, we still bicker. He tells me when I’m being a bitch. I tell him when he’s being an insensitive asshole. There are times when I’m sure we both could use a break but we hang in there. By the time the smoke clears we’re laughing like loons and enjoying one another once more.

He wants to do more. I curl up under the blankets and allow him. If I need a soda he brings me one. If I am sick he checks on me and helps me back to my chair. If I’m hungry but nothing in the house sounds appetizing (and we have two or three dollars) then he volunteers to run and get fries and sweet tea from McDonalds so that I have something in my system.

Our routine is simple, relaxed. We get up at the same time and head downstairs. He logs in and gets ready for work. I curl up in my comfortable chair and put my feet on the ottoman. He tucks my blankets in around me and brings me whatever I need before he heads back to his desk to work.

At some point during the day he helps me shower. I wash my hair and he washes my body. Then he washes himself before helping me out. He escorts me into the living room where my clothes are waiting for me before he heads back to his desk. (Showering and dressing seem to be the biggest energy drains for me but showering feels so good!) I dress slowly, piece of clothing by piece of clothing, then wait for him to help me back to my chair. If his schedule allows for it, we nap together. Otherwise, I sleep in my chair.

The days are the same. His love is the same. I thank him for taking care of me and he tells me that he loves taking care of me.

I never imagined finding a love like this. Someone who makes me laugh and smile is also the person who looks out for me, protects me. The person who drives me the most insane is the person I can’t imagine being without.

The man who kisses me gently in the morning is the same man that makes sweet passionate love to me at night. The man who is my warden is also my protector, my champion, and my guardian. The man who made me his wife has made me his life.

I’m convinced that when faced with a love like ours, cancer doesn’t stand a chance.

 

Life. Love. Cancer.- Part VIII

We’re on the eighth part of Life. Love. Cancer. It seems odd to say it, but I’m kind of sad that we’re at this part already. Writing these posts has helped me in ways I hadn’t even realized.

They have been challenging but in a good way. Many times I have struggled and wondered where I would go with each installment, often to the point of tears. Now I realize that the tears weren’t tears of frustration, but my way of coming to terms with my diagnosis.

I believed I had dealt with all of it. In my heart of hearts I didn’t think there was anything left to confront. Well, anything short of death itself. I see now that I still had a lot of anger and frustration to work out. Writing this series has helped me to find a sort of internal peace that works well with my determination to not give up hope.

Before all of this, hope was just a word on a page. With every appointment, every scan, I sank deeper into the acceptance. I wrote letters and planned holidays that were over the top. Plans that I never had the energy to carry out, but the plans were there just the same. I focused all my energies on the end because that’s what I was told to do.

But it wasn’t me. I hated the feeling of waking up every day and going through the motions. I wasn’t living. I was waiting to die.

Waiting.

To die.

I started blogging about all the things that were happening and the response was overwhelming. People left comments and sent positive thoughts my way. They sent emails and offered encouragement. Perfect strangers brought to life a small glimmer of hope.

Today I write this and I know that I have made peace with the fact that I might die. I might die. My oncologists and varied physicians aren’t God. They do what they know to do in the best way they know how to do it. They give facts based on tests and labs and co-morbidities. I know the odds are against me. I know I might die.

The thing is, I also might live.

All the prayers, all the words of encouragement, and all the healing vibes might be just the thing to lead me to a miracle. I know that I don’t deserve one more than anyone else. There is nothing extraordinary about me that sets me apart from all the other people in the world who are fighting for their lives. I’m a girl in a world full of sadness and strife, in a world full of struggle and unfairness.

Am I wrong to hope? Is it selfish of me to watch my little girls and hope against all hope that I will beat the odds, that I’ll be there when they grow up? Maybe so; but holding them close and listening to them laugh only fuels the fire, the will and the desire to come through this on the other side.

 

Life. Love. Cancer.- Part VII

I don’t think that anyone can ever explain what happens to a person when they stand toe to toe with a terminal diagnosis. Unless you have been there and experienced it, there’s no way you can help someone else to understand. Yet, people ask all the time.

They want to know what it’s like to do something knowing it may or may not be the last time. They want to know how it changed your relationships with those you love. They ask if it feels weird to have sex knowing that you’re probably only going to be having sex for a little while longer.

I try to be understanding. I answer their questions to the best of my ability and I try to do it nicely. Especially when I know that they have read my blog, because they feel like they know me after reading my stuff for almost three years. I figure that I owe them a little common courtesy.

What no one realizes is that the entire cancer thing is completely subjective. My experience with it isn’t like anyone else’s. My thoughts and emotions might not sync with their grandmothers experience or their sisters experience.

Still, it’s sometimes easier to answer their questions than to answer the ones that they left unasked.

The questions just hang in the air. They want to know about HPV. They want to know if I ended up with HPV which led to cervical cancer because I was a slut (I wasn’t- Sperm Donor had it and passed it onto me while the repeated rapes and abuse were occurring.).

They want to know if they will one day be like me.

And I can’t answer that question for them.

There are too many variables; too many unknowns. I’m not a doctor. I don’t have the answers and I certainly am not in any place to offer any sort of reassurance.

So I tell them to see a doctor. Even if they’ve never had unprotected sex, ask for a full work-up. I remind them that they are their best advocate. If they don’t find the answers they’re looking for, go elsewhere. Doctors are human too.

If I’d argued with every gynecologist that told me that the results of my Pap smear were abnormal. If I’d made them read the family history section of my records. If I’d told them sooner that I was sexually abused repeatedly as a child. If I’d remained steadfast in my insistence that my age didn’t mean I was exempt from developing cancer.

If I would have taken my own advice, I might not be fighting for my life.

Life. Love. Cancer.- Part VI

I wrote it but it seems kind of silly. Still, it came from the heart, so I wanted to share it with those of you who are following Life.Love.Cancer.

Dear Cancer,

Let me begin by saying that I know that writing this will likely do absolutely nothing. I acknowledge that this is an exercise in futility. Still, I’d be lying if I said it didn’t feel damn good to be doing it anyway.

For far too long now you have had the power. You have invaded my space, my brain and my body. I’m not okay with that any more than I was okay with my biological father raping and abusing me for years. I am an independent woman with a life. I have no time nor any use for the things that you bring to the table.

I know you’re a stubborn bastard, or maybe you’re just a lazy bitch who refuses to leave because there isn’t a better gig elsewhere. However, I have news for you. This is MY life; this is MY body. I don’t want you here. I never did. No doubt this is all a little harsh to you, but if you’ll hear me out, I’m sure you will understand where I’m coming from.

You see, I’m a mother. I have two absolutely gorgeous little girls who need their Mama. You know the ones I’m talking about. Gorgeous with impish smiles and tinkling laughter that the angels themselves envy? Yeah. Those girls.

They need me. Maybe they don’t realize it yet. Maybe they don’t think they do right now but as their mother, I know that will change. And when it does, I fully expect to be here for them.

I’m also a wife. Finally, after all this time, he married me. He loves me. Sure, he’s a man and he has man tendencies but he’s MY man and he loves ME. Where I come from, that means something.

I love being married to him. For me, it’s the best thing going. No one loves me like he does. While this whole terminal routine seems to work for you, it doesn’t work for me. I don’t like it because it threatens my relationship with him. I’m not ready to have that be over yet.

So here is what I suggest-

Chemo. A whole lot of chemo. Maybe some radiation. Nuclear warfare developed just for you. I’ve asked nicely, so really, you have left me with no other choice.

I’d like to say that I’m sorry it had to end this way but I’m not. So, leave quietly. Pack what you can now because you won’t ever be welcome here again. Are we clear?

Good.

I’ll see you in remission.

Without apology,

The Butterfly Temptress

Life. Love. Cancer.- Part V

I’m more in love with my husband now than I ever was before. I probably didn’t know or understand just what love really was until the oncologists told me that I might not have it. I was a stupid girl living in a make-believe world, full of romance novel misunderstandings and real world consequences.

Along with being in love with my husband, I find that my attraction to him has grown to gargantuan proportions. He smiles and I see his rakish charm. He laughs and I feel that tingle somewhere deep inside. He reaches out to caress my skin or hold my face in his hands and I am taken to a place most women only dream of being with their husbands.

I know that I’m one of the lucky ones. My husband is faithful and he is strong. My husband is gentle and sweet. He is everything I waited to find. Is it any wonder that being near him, being loved by him, makes me yearn for his touch?

Sometimes we just can’t. The day has been too long and the pain is just too much. The desire is there but the energy is not. On those nights we snuggle close, skin on skin, buried beneath the comforter in our perfectly sized bed. We talk and we laugh most days. Other days, we cry. With our arms wrapped tightly and our toes tangled ever so slightly.

Then there are the times that we can’t get enough. A look across the room, a smile or a wink is all it takes to urge us on. In our bedroom, the living room, or maybe in the shower as the water begins to turn cold. The where or the why doesn’t matter as much as the when, as much as the fact that right then we need to be one, without a thought to anything other than one another.

Cancer is cruelest to those who need their families and to those in love. Who will be there to hold the hand of the man who stole my heart? Who will be there to fix his dinner, to remember his birthday, or make sweet passionate oral love to him at the end of a long work day? I can’t help but cry when it plays out in my mind.

Who will hold him close and cherish him the way I do? Who will see through his bark and beyond his bite to know that he’s hurting and in need of a hug? That’s my job, that’s what I’m here for. Cancer doesn’t listen when I scream and cry, when I try to make it understand that I’m not finished yet.

By now I know that the best thing to do would be to let him go. I should encourage him to find someone now, to help make the transition easier. Instead, I’m more selfish than ever. I want him all to myself for as long as I have left. I want his hugs and kisses, his touches and his orgasms to be mine and mine alone.

I just want everything that is him to be wrapped up in everything that is us until the end of my time.

Life. Love. Cancer.- Part IV

I can’t even begin to tell you what it feels like. They deliver the news like it’s no big deal, like it happens every single day. Their eyes won’t meet yours and they glance at the clock above your head or clear the reminders from their pagers.

All you can do is watch your body from above and try to decipher the words. It’s like they’re trying to talk to you while you’re underwater in a swimming pool. You know, it’s warbled, a little muted and you want to hold up your finger to motion for them to give you just one minute to come up for air.

Except that there is no coming up. Your chest heaves and you begin to cry silent tears. There is no air to be had. Your nose runs and there are rivers of mascara on your cheeks. Later you will look in the mirror and ask yourself why you bothered to wear it at all.

Even now, that’s how it feels. Like it’s happening to someone else. Almost like I’m watching a made for television movie except the main character looks a whole lot like the fat me that I see in the mirror.

The hardest part of the entire process is the internal mental dialogue. You ask yourself a million times if you’ve thought it all out. Did you make the appointments for the radiation? Did you schedule chemo for the days when the kids had school? Did you remember to tell those kids that you love them even when they’re mouthy?

You smile at everyone whether you feel like it or not. You hold your nearly bald head high when you tell the old ladies of the hospital auxiliary that you’re doing fine, getting better every day. Then you tell yourself that you could always find the next Dr. Kevorkian because at least then you would die with at least a trace amount of dignity. All the while, you smile that thousand watt smile that your husband says is the one he knows isn’t real.

It’s not always self-pity. Sometimes you’re just downright pissed off; at the doctor, at your husband, at the nurse who holds the bags of chemo. You want to scream and pull the IV out of your arm like your former patients used to do all the time. You want to ask the clergy who prays for you why God decided that this was your cross to bear.

Friends don’t know what to say, so they stop calling or emailing. Family members don’t visit and gossip among themselves about how they think you’re doing. You can rely on your husband and your mother, but you hate to because they just look so damn tired.

It’s an emotional high wire act that can go wrong at any moment. Which mask is it today, the happy but in pain or the honest and unbearable? My husband says it’s a roll of the dice and he’s right; except I’m usually not the one rolling them because cancer has already done that for me.

Luckily, I do have my writing. When the world is a mess and my emotions are jumbled, I can sit down and blog. I am lucky to have met some great people through my blog and through other things I have written, so I try to let that be my focus.

Someone out there has it much worse than I do. This week someone has already lost a lover, buried a child, or been diagnosed with HIV. Someone in a country far away doesn’t have enough food to eat or money to pay the rent. Others have no jobs and no idea if they will survive another night with an abusive spouse.

When I look at the big picture, I’m ashamed of myself. For as much as it seems has been taken away, I have been given so much. My children are healthy. My husband still has his job. My mother and father love me. I can laugh, smile, and breathe.

Today I am alive.

Life. Love. Cancer.- 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 promptly 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 desperate 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.

Life. Love. Cancer.- 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.

Life. Love. Cancer.- Part I

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.

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