Tuesday, January 22, 2013

My wife is awesome. That is all.

So we wrapped our arms around each other
Trying to shove ourselves back together
We were making love
Making love
-"Origin of Love" by Hedwig and the Angry Inch





Monday, January 21, 2013

Chemo Therapy

It is a daily reckoning. To be faced with your own mortality when you don't feel physically ill is one thing. To be faced with it when feeling physically more ill than you've ever imagined feeling is a new thing. A thing all it's own. Apart even from the reality of death, being forced intellectually to recognize that you will definitely die someday is interesting. Logistically, intellectually I know that Stage 1 Invasive Ductal Carcinoma isn't the thing that will kill me. It is only the thing that brought me here, to this uncomfortable place of reckoning. Chemo, on the other hand...whew. I'm on some serious drugs. Not your run of the mill glass of wine, not a little hit of grass here and there, and not the funny "hahahahahaha, I'm so HIGH on drugs because I just had surgery and I am sending hilarious text messages of my noobs to all of my friends, weeeeee!" type of drugs. No. these are serious fucking drugs. My mind is blown by the level of terrified I can manage to feel. I am devastated beyond any level of depression I have experienced, I am lonely, I am utterly sad and sick and tired. So I take whatever additional medication I need to in order to sit back and close my eyes and drift for a bit. And I sink into it. I sink into every thought and sensation that the present is willing to grant. I sink into the discomfort of the disparity. And that is when I realize that I am in the trenches now. I am in the clutches of the experience. I know that in time will come the glory of this fight. For now I drift.

Tuesday, January 8, 2013

Free Agent: Guardian Guide

I've been thinking a lot about a woman I once knew. I was a little girl, and she was a woman. And then I was a young woman. And she was dying.

There is much to be said about Sabrina, so much that even as a writer I feel I couldn't properly express her magnitude. You would have had to know her. The important thing to share here though, is that she has been gone for almost 5 years and I haven't seen her in over 8. But I have recognized growth in my life, throughout out my adulthood, seeded from pearls that she sometimes temperamentally shared, years before. Once, I was pissed off about the war that the US waged on Iraq and I paced my living room floor in my hippie apartment in Bryan Texas, raging over the landline to her as she listened patiently. She let me ramble on and on and on. I was distraught and passionate and hell bent on changing the world, or at least the minds of other people. And then she quietly spoke. She warned me about being angry. "This isn't going to get you anywhere. Start with yourself. Love the people around you. If you want to make a change, the bigger picture change starts within you..." I was pissed at her that day. I thought she didn't understand. I thought she was high and acting like a hippie dippy freak. I was 22 years old. The idea that she planted in my noggin that day has manifested itself as the number one motto that by now I live my life. I have practiced it and it has worked. This practice has birthed change that is tangible.

Before that she was like an aunt or a god mother to me. The seedy, crude, big, bold, sexy, gut laughing, pot smoking spiritual seeking crystal/rock hugging, incense burning, husky voiced, fearless, unapologetic, admittedly vulnerable, insatiably frustrating, grossly honest and raw and self exposed, crazy god damned godmother.

She is with me a lot since my cancer diagnosis. But now I inadvertently mutter phrases of hers that I have never said myself. Sometimes when I drive myself to a cancer appointment in my car alone, I feel like she is sitting in my passenger seat, sharing raw wisdom of mortality and grace, the fantasy manifesting itself in my body with tears that spring from deep inside my throat. Or laughter. Laughter. Laughter. Sometimes I see her in someone else. A glint in the eye, a toss of the head, a belly laugh, body type, manner of speaking. She is like an invisible laughing buddha angel, occasionally poking me in the ribs. She pokes at me randomly, reminding me that I was not put on this planet to be a pleaser of people, but an inspiration, and possibly a guide. She reminds me to say "fuck it all" every now and then. She reminds me that bands of women can be your best friends, and sometimes your truest sense of familial love. She reminds me that I'm going to die someday, but that it isn't today, and while I am here I should have a hell of a good time and serve others by serving that love and compassion that I have within me. She reminds me that I have a gift. She knew it because she had it too.

It is no surprise that she visited me today, during my first chemo session, in the form of the financial counselor at TX Oncology. There was something in the way she flicked her head when she spoke quickly and laughed, her body type, skin tone, bone structure. She spoke to us like we were familiar, administered her speech and then with a hastiness that would have been awkward from anyone with an ounce of self consciousness said in that husky voice, "You are beautiful." Randomly, spoken like a fact. And walked away.

I found the last letter she wrote to me before she died. I would like to share a few passages here, in the name of keeping her spirit alive and to remind myself that there is so much magic in this life. "It's going on late afternoon now. I'm dressed in my favorite "holy" jeans and my black velvet bra and black velvet panties. I feel good! Black top cut kinda low but not too much, just enough to enjoy to power of the BOOBS, oh yes yes YES. I was just full of myself ... and enjoyed the whole day. Will I actually do that everyday? I will try anyway. SAY YES TO LIFE!! I just hate limitations.....I miss you but you always feel near. Be good to yourself and of course, to others...Love and Peace and Harmony and Passion, Me"





Sunday, December 30, 2012

"How is it Going?", you ask.

3 weeks and 2 days post op. My tissue expanders (hard plastic balloon boobs) were expanded 4 days ago. I will have another expansion in 3 days. My chemo port was installed 3 days ago. I am going to try and go back to work in 4 days. I have my first round of chemo in 10 days.

How do I feel?

Physically: Sore, slightly winded, fatigued, generally uncomfortable 100% of the time. My armpits feel sunburned. The tissue expanders are placed below my muscles so I occasionally have spasms. All of the time it feels like I have done an extreme chest work out. The sternum is tender to the touch, but getting less so as time goes on. The inside of my chest wall feels almost exactly like your skin feels a few days after sitting for a very large tattoo. For those of you reading that have never healed from a large tat, I always compare the feeling to the tattooed body part being dragged along pavement or gravel, full of open wounds and raw, tender skin. I have phantom nipple pain. I guess. When I am cold, it feels like my nipples are rock hard and tender. But i don't have nipples. Maybe its the plastic not warming to my body temperature. The port is still sore and I hope swollen, otherwise this sucker sticks out so far from my body that it appears I have a raging boil about 2 or 3 inches just below my left clavicle. When I stretch my arm a certain way, or roll my neck as I usually do to loosen up, it pulls the port, which is connected very deeply to one of my main arteries. The port gives me the heeby jeebies. Just as I was in the brink of weaning off the narcotics, I have to have one in the morning just to get moving. I am a side or stomach sleeper, but stomach sleeping is not an option, and to lie comfortably on my side I have to wear a tight sports bra or place a small pillow or my hand in between my "breasts" as the hard expanders seem to knock together. No thanks. It is almost impossible to snuggle with my partner. Intimacy demands creativity at this point and the physical discomfort as well as the mental discomfort doesn't so much lend itself to the creative.

Mentally: Frustrated. It frightens me that I get winded after a brisk walk, and when I have trouble catching my breath as I first get out of bed. I can't do the same activities I could do a month ago. Guilty. I feel guilty that my partner is carrying so much of the weight. I don't feel sexy or interested in sex. Sadness.That my gorgeous honey will get bored of what I have become and will be left unsatisfied for too long. Resolved. I feel prepared for Chemotherapy. I am getting better at the waiting game. I am slightly sedated to the fact that I will be chock full of medicine that will kill healthy cells in my body, and that I will remain unaware of what side effects will happen to me until they actually do...or not. Gratitude. Grateful that I am not in this alone. That my friends have become my family and they have proven to stand by me no matter what. That the tribe I have always longed for exists. I feel loved unconditionally and supported beyond measure. The peace that that feeling brings keeps me afloat. Always.

And I miss...oh my God do I miss.. Moving with abandon, that only those without foreign objects surgically inserted into ones body can. Wine. Sex. Feeling sexy, attractive. Running, jogging, hard core work outs. Caring what I see when I look in the mirror. My long red hair, my breasts...

And still, I would not trade any of the things that I whine about for the naïveté of my mind set pre cancer. I would not trade it because I know that with the weight of this burden comes the fruit of a new life. I am not afraid anymore and that alone is the most miraculous innovation of my life. I know that the lack of fear is worth all of the above, because all of the above is temporary. Or so they say.

Tuesday, December 18, 2012

Anterior to Life

"Love is anterior to life
Posterior to death,
Initial of creation, and
The exponent of Breath~Emily Dickinson

Today was a good day. I have come a long way in a short time. A cancer diagnosis does that to you. You find out you have it. Your life as you know it ends. You live in limbo. You begin to accept that you have cancer. you do so by waking up each morning feeling for a millisecond that you know your life, and then remembering that you now have cancer. And with each moment you gain the strength and the knowledge and hopefully the support to empower you to make the decisions to not only carry on and function with the knowledge of your having cancer, but finding the tools to get rid of it, or fight it, whichever your case may be. You learn that you will change, your life will change, your perspective will change, your partner may change, and a number of other things will most likely change. So, here I am 10 days post bilateral mastectomy and having one of the better days I have had since diagnosis. Despite the scars, my under construction, nipple free boobs look fantastic in clothing and they don't scare the shit out of me or make me cry when I see them naked in the mirror. In fact, I love to show them off. They don't yet feel like they belong to me. I wonder if they will ever feel "private" again. I still have drains which make it a total pain in the ass to get dressed. You have to hide the drains somehow, in my case today, duct tape on the inside of my cashmere cardigan best served me with a suitable disguise (thanks to the infamous Kayla who is a superhero freak of nature that has the ability to solve, with little to no resource,everything that needs solving). Today is the second day that I have actually bothered to wear real pants or put on mascara in over 10 days. It was because Kayla needed a haircut and I still cant do it and we desperately needed to leave the house. So we went to the shop. I love my new short haircut. My skin looks fantastic. I got some new lipstick and some fancy hand me down clothes from my bestie's fashionista mom. I've gained five lbs but I'm willing to ignore it for a minute and cut myself a break. I've been high on narcotics for over a week and I'm bound to get tired of the shit and start exercising one of these days. So overall I feel good. I feel cute. It was nice to see the girls and nice to see my chair, touch my stuff, hang out in my break-room, shop talk for a bit while Jen cut Kayla's hair. After her adorable haircut, we headed to one of our staples for dinner and our gals Shae and Jenny met us there. As always we had a good time and on our way home I spoke with my friend Mel about co hosting my birthday scarf party that we are holding on Sunday. She and her hubs are starting a party planning biz of sorts and I like to promote good people when I can so I asked them to help me with this little last minute project. As usual, as soon as we get home I check the Facebook. My grandma had, unbeknownst to her, unleashed a ripple of effects that would cause Kayla and I to end our evening crying in one another's arms. She commented on a photo that was taken of me by K a couple of months ago on a day date to our favorite Texas winery, William and Chris. On this particular day, we had just come up with the financial solution to how we were going to buy our sperm. We had found our donor. He was perfect. We were giddy with joy and excitement and every natural high feeling that comes along with standing at the brink of what you believe to be one if the biggest and most beautiful, important exciting abysses of joy in ones life. We were going to make a baby. We had a donor and we would be parents, probably by this time next year. Our morning conversation was giddy full,of laughter, high fives, and random jumping up and downs. We had started the date off at brunch, then a drive to our favorite spot in the hill country to pick up our wine club shipment and enjoy a glass. Next time we made this drive I would be the DD and we would pick up a couple of bottles to save until after the baby was born, talking about how we would build up our collection during the pregnancy instead of drinking our shipment with our usual unabashed enthusiasm within days of receiving them. We brought the dogs and flirted with a baby girl who was barely walking and talking and kept wobbling over to pat Marybelle and Bertie. As had become our regular routine with any activity we did, we talked about how these trips would be different for us once the baby was here. As young parents to be, we never went anywhere or did anything anymore without comparing the experience to how it would be once our little person was finally with us. When I look at this photo I see in my eyes how my heart felt that day. I had to harden myself to it, let it melt, and then give in. Just a glimpse into what could have been, what almost was. And with my sniffle, she instinctively moved in from the other room to hold me as I cried. And here we are, a few weeks shy of my first chemo treatment, out of full time work, celebrating the fact that my cancer has not spread and that there are drugs that will keep it from coming back, the same drugs that will prevent me from allowing a pregnancy. I have done a lot of processing on this front. To mourn the loss of motherhood, or at least the idea of physically carrying a child, had to happen quickly in order for me to have the oomph that was required to do what I needed to do to face the cancer treatment. For Kayla, it has been all about taking care of me, and taking over my roles in the household as well as her own, staying professionally available at work, upholding the health insurance, making the bacon, and generally keeping our little world turning, while Im kept busy making huge decisions about how to handle what's happening in my body. For her, it was about getting shit done so I could get well. Renovate the "would be"nursery into a yoga/healing room, turning the trashed out art studio into a family guest room, etc. etc. So, the funny thing about what happened tonight is that after I wiped my tears and blew my nose to go about my business, she found something light and funny for us to watch on TV. We decided on The New Normal, because I had heard it was cute and its a gay show so I'm down...It didn't occur to me that we were setting ourselves up for the little breakthrough that we so desperately needed to finish. In the pilot of the sitcom, one of the men in the gay relationship that wants to become a dad is recording a video for his future child to watch. He gets choked up as he is telling his unborn baby how desperately he or she is so wanted and already so very loved. My mouth dropped in that awkward smirk between a laugh and a cry and I look over to see my beautiful rock as she crumbles. We fall into each others arms and we cry for the first time together, for our baby that we won't yet get to meet. Our baby that will not come in 9 months from my womb, but in almost two years from hers, our baby that will not yet live in the nursery and will not yet celebrate its first Thanksgiving or Christmas next year. We cried finally, openly for what we feel somewhat robbed of.

But our baby is so very loved and wanted. Now more than when that photo was taken. And it's moms are so much more prepared. We are stronger for that baby. We are better for that baby. As for me, I am better because of this love. So grateful for this love. This is what we signed up for. I made the right choice. This is the First Day of My Life.

Sunday, November 25, 2012

Fear

"Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.

When we think that something is going to bring us pleasure, we don't know what's really going to happen. When we think that something is going to give us misery, we don't know. Letting there be room for not knowing is the most important thing of all. We try to do what we think is going to help. But we don't know. We never know of we're going to fall flat or sit up tall. When there's a big disappointment we don't know if that's the end of the story. It may be just the beginning of a great adventure."~ Pema Chodron When Things Fall Apart

The truth is that I have  lived a large portion of my life in fear. Fear of not being taken seriously, not being smart enough, of being alone, not being good enough or successful enough, and most of all fear of getting sick. Terrified, in fact, of getting sick. The anxiety that has permeated my soul from this particular fear dates back to fairly early childhood, and grew stronger in early adulthood. Over the last year I had been facing this fear head on. I had been working to rationalize my irrational fears of getting sick, had worked on sifting through the root of the fear and what it is about getting sick that I'm actually afraid of. Actively i had been working through this, right up to the very morning of my diagnosis. And now I have cancer. And wheni got the phone call, I literally breathed a sigh of relief. In that instant I was cognitively aware that this fear was going to be addressed, once and for all, and that this was the beginning of freeing myself from it. Then there comes the myriad of emotions that I imagine anyone diagnosed with a dreadful disease experiences. There is the anger, the anxiety, the sadness, the depression. But the fear I was familiar with. The fear did not suddenly become more real. I have been practicing the fear for years, and it has always been real. Cripplingly so. So maybe what I am trying to say is that I am willing to embrace this time in my life because I see it as a real turning point for me. I can't know what this disease holds for me. I can speculate. I can do my best to control what I can control about the situation but I really just.can't.know.

Saturday, November 17, 2012

The Bridge

Here is the ketchup. I was diagnosed with breast cancer on Monday. Three negative pregnancy tests and today my monthly visitor came. TMI? Such is my life right now. I am squabbling with myself over starting a new blog, the cancer blog, or keeping up with this blog since we are still, technically in our first year of marriage. The marriage and the cancer go hand in hand now. The cancer is part of the marriage. The cancer is in me. The cancer can go fuck itself. To say that I feel disconnected from the world is an understatement. I feel like I can't connect to anything. To live, to cope, is to go through the motions of my life pre cancer. I can do it well. It's called autopilot. I'm passing. Unfortunately there are decisions to be made, and while decisions like whether or not to lop off your boobies in exchange for something else entirely, or just scoop out part of one boob should be made under sound mind and calm spirit, I just don't know that that is a possibility. The decision could still be made for me, although it would be nice to have some control in the matter. Perhaps I jumped the gun when I went about chirping cheerfully that I knew that underneath all of it, without a shadow of a doubt I would come out on the other side of this cancer thing a better and more inspired person. An inspiring person. A fearless person. And by underneath it all I refer to the fear,the anxiety,the sadness,anger, the mourning of my unborn child, the mourning of a pregnancy I will never have,the mourning of my breasts as i know them,the mourning of my hair(that will grow back, i know), the changes that will take place inside of my body once chock full of chemicals and radiation and hormone blocking drugs with horrible side effects. Perhaps I put too much faith in the old adage "fake it till you make it". I am faking it most of the time. What i have become as a result is a vessel completely void of emotion, eerily calm, or synthetically optimistic, or a blubbering,irritable mess. I feel right now as if I'm about to lose myself. If I make the decision to have this surgery I will lose a part of myself. Forever. And I like that part of myself. In fact , I like all of myself. The self that I knew before cancer. This new self, I fear. I don't know her. I don't know this aggression. I don't know this pain. I don't know this fear or this resentment or this loss. I don't know how to bridge the gap between myself and the people around me that don't have cancer. I suppose that the body who is writing this entry is the bridge between pre cancer and post cancer me. I am not familiar with this body.