Feel the Burn

Parking in front of these signs makes me feel like I'm part of some sort of elite club. I've always gotten an odd sense of privilege from it, like I'm special, or something. Weird, I know.

Tomorrow, will be my last radiation, treatment. I'm really not sure how to process it yet, as so much is coming to the forefront. Today, as I pulled into the Cancer Center parking lot, I stared at the patient parking sign, and was surprised to find that I was almost ready to cry. Was it relief, sadness, joy, fear? I'm not entirely certain, as I've been feeling a mixture of all these things. The morning was bright and sunny, and while cold, it did not hold the bitter chill I had been expecting. As I traveled in my car, to and from, the whole sky seemed to open up. Something big is happening, something I cannot yet name.

It's difficult to remember life before cancer. It's hard to imagine what it will be afterward. I was already in the throws of massive change, being a new mother, when my diagnosis came. My world was already forever transformed, as well as my body and spirit. While I met the diagnosis with surprising calm, I knew the heaviness of it. People have asked me how I can handle it the way I do. Honestly, how else could I handle it? Perhaps it's because I've had cancer before. Perhaps it's my stubborn determination to fully experience things. I did it with my brother's death, and I've done it with this.

Maybe, once it all reaches hindsight, the meaning will change. Maybe it will look different from the other side. I've been poisoned, had my breasts carved off, I've been burned...the burning was awful. Chemo was a cake-walk, compared to fifteen years ago, but radiation was something entirely new. I have joked about my life as a microwaved burrito, but really...it was very painful for at least a couple of weeks. And of course, having my breasts removed was difficult, but I've gotten used to that. Besides, I'm getting new breasts, later. They will have scars stretching across them. Nothing can be done about that, but I've never minded scars. They tell a story...they are the stitch-work, sewing who we become together.

My mermaid, didn't surface, today. Today, I felt more like the phoenix, preparing to rise from the ashes of my former self. For the first time since this started, I felt a fire within. I felt life, I felt breath. Perhaps that's what prompted the lump in my throat. Tomorrow, I might actually cry, and maybe I'll cry again after that. When this is all done, and I'm threading my new existence, perhaps only then, will I be able to see it in its entirety. In the morning, comes the final burn. There will be a lot to do in my recovery from treatment, but there is still something final about it. It's over. It's really over.

This was actually after the redness and pain began to subside. My skin will be "tan" for a while, however.

"Did my time among the strong.

Some are here, and some are gone.

Did my time among the cursed,

praying that my brain would burst"

~Glenn Danzig

Liquid and Daydreams...

"Feed me, Seymour"

I have yet to meet a little girl who doesn't love mermaids. Of course, I was no exception. I wanted to be a mermaid, especially after seeing Daryll Hanna in the movie Splash. Over the years, I've met or heard of countless little girls named Madison, after her character, and sure enough...the mothers are always in my age group. There's something about the thought of just vanishing into the sea, that seems so freeing; like flying under water.

I used to sit for hours, or sometimes lie in bed, with my eyes closed but not really sleeping, and I would imagine what it could be like. The daydream I visited the most, involved waking up in my own bed, in my own bedroom, but the world would be covered with water. Everything looked the same, only instead of a little girl, I was a beautiful creature with a shimmering tail and flowing hair. I would swim out from under my covers, and instead of being confined to walking to the bathroom, or the living room, or the kitchen, I could just swim there...or, I could just swim out the window, never having to meet the pavement. I could swim over the house, or around it. I could swim to my school, but not have to go in. I could swim right over the top of that, too. Even though the world I knew was still there, being under the ocean made it more beautiful, more limitless.

I've got about nine or ten radiation treatments to go, which should only take a couple of weeks. Even though chemo made me feel worse, this is more exhausting, and the damage to my skin and muscles has become quite painful. The machine is large and strange-looking. It can be intimidating, especially when I'm having to lie perfectly still in a fixed position, as it moves, and rotates it's enormous head around me, getting way too close for comfort, much like a dangerous beast sniffing at a helpless creature, examining it from all sides, while making the decision whether or not to devour it. I recently named the machine Seymour. It's not as easy to be intimidated by something named Seymour. But then...Seymour has had many names.

The bed that I am positioned on, cushioned by a fitted “pillow”, moves up and down, back and forward. It moves me closer to the machine, and I stay in that spot until treatment is done. This takes about fifteen minutes. You can think about a lot of things over the course of fifteen minutes, or you can focus on a few. My treatments are in the morning, so often times, I'm sleepy. Even in my still and tired state, I remain awake, and sometimes...I drift.

I don't remember how many sessions I'd had before it happened. Lying there under the machine, I returned to my mermaid self. I watched Seymour turn and move and hover, and realized that if the world was covered in water, I could just swim away. The bed would not have to resume its prior position. It would not have to move at all. Even with the machine resting right above my face, I could just swim.

This daydream came to me in the middle of the afternoon, today. I was coming home from visiting my physical therapist. We had decided that my burns were too severe to be able to perform the exercises needed in order to regain full use of my left arm. On Andresen, as I was pulling forward through a green light, first in line, an SUV blasted through a red light, right in front of me. Had I not hit my breaks immediately, it would have been devastating. I'm sure I would have survived, but not without being badly hurt. The car would probably have been totaled. Managing to miss the collision entirely, as the irresponsible SUV driver sped down the road, I continued my journey, and soon the world was under the ocean, with beams of light peeking through the clouds, reaching down. Looking at the glow from above, I found myself somewhere between ocean and sky, remembering how I used to sit watching the robins in the back yard. How I had envied them. How I had longed to fly. It was then that I wondered, if there was much of a difference between flying and swimming. The freedoms seem the same, after all. I could dip, dive, twist and soar just as easily under water, as I could in the sky. Perhaps there is no difference. Maybe the ability to flow freely is not confined to a specific climate or shape. Maybe that's where the magic is. So many things happen to our bodies, and we find ourselves in the strangest of places. No matter where I am, I suppose there will always be that place behind my eyes, where I'm as free as a bird, and as graceful as a mermaid.

"I guess I'm an underwater thing, 

so I guess I can't take it personally.

I guess I'm an underwater thing,

I'm liquid running.

There's a sea secret in me.

It's plain to see it is rising,

but I must be flowing liquid diamonds"

~Tori Amos

The Year the World Didn't End

Wait. Where did the year go? I remember bits of the beginning. I had a new baby, I was a student, and everything had changed. In January, my milk stopped coming in. I cried a lot over it, at first. Nursing Violet was one of the most amazing things I have ever done, next to carrying her in my body. I really did grieve over losing that. February, March, April went by while I worked at balancing school, and caring for a newborn. Then everything changed, again.

Spring has become such a strange time for me. My brother died in the spring. Finances plummeted the spring after that. And then I was diagnosed with breast cancer. I can't recall the exact date, but it was sometime in May. For the last few years, it seems that catastrophe always strikes when the grass is new, and the trees are covered with blossoms. I've always loved spring, but now it carries a slight sense of dread.

What is so strange about having cancer for the second time, is that I was prepared for it. The treatments have been more drastic, and my body has been permanently altered, but I accept it. Sure, I have stressful days, but that's mainly due to losing income, rather than the illness itself. I can't count how many times I've stated that if cancer and Violet were all I had to worry about, I'd be fine. Fortunately, we've had a lot of help along the way. This year, I have learned a lot about how amazing people can be. Friends, relatives, and even strangers have rallied around my little family, helping us in ways I could not have imagined.

Christmas was amazing! As usual, things were extremely tight, and we weren't sure if we'd be doing much of anything. I really didn't need a lot. All I wanted was a tree, and something for Violet. I did not anticipate that there would be so much more. Without warning, gifts, money, visits and an overwhelming abundance of love came pouring in! We hadn't asked, it just came. Violet was showered with incredible gifts, as were we, and we even had a little for Daryll and I to do something for each other. Humbled is an understatement.

Maybe it makes me weird, but above everything else, I feel lucky. I have been the recipient of so much love, how could I not? Of course I have bad days. Things are tight, and so much will remain uncertain until I can get back into school or work. We'll be okay, though. We'll survive. After all, it's what we do.

In a couple of weeks, radiation ends. Then, all I have to do is heal, build my strength, and prepare for reconstruction. That could be a lengthy process, but the cancer treatment itself, is almost done. It's kind of difficult to wrap my mind around that, just yet. Like everything else, I'll take it as it comes.

It's been crazy, tumultuous, and at times, just beyond any description. Over all, it hasn't been a bad year. I'm alive, I've got the most beautiful daughter in the world (which didn't end), and there are a lot of people who care about me. So really, I can't complain too much.  

Almond Milk

A warm cup of almond milk, with vanilla, cinnamon, and nutmeg...my insomnia drink. I don't know if anything in it actually helps, but perhaps the warm comfort is all I need. This autumn has been mild and pleasant, even with the last few days of heavy rain. But with winter closing in, I am already feeling the promise of its chill. Opeth is the music for the moment. Something about it feels fitting to decorate the walls of my limbo at this time. As much as I know I'm going to feel like hell in the morning, sometimes I find more truth and sight in these sleepless hours, than I do anywhere else. It is MY time. I belong here. Once the noise in my head has established the pattern for the night, and it gets me out of bed, I am often rewarded for doing so, and as stated above...punished for it later. This is fine. There is nothing a nap won't cure.

I need this. I need the time to think, sort, re-prioritize. While it's nice to reconnect with the “real” world as I am walking this landscape, I have found that I need to back away, as well. I am on a very important journey, and I prefer to focus on what I can learn from it. Parts of me may be missing, but if I continue to look and learn, I will walk away with so much more than I lost. There have been too many distractions as of late, and I have been spending too much time getting involved in the lives of others. This is not what I need, right now. It only leaves me feeling more alien and exposed, even with my awesome new “stunt breasts” to make me look somewhat normal. Having visitors from time to time is good. I like staying connected, but in short bursts, and from a safe distance.

I have started my second week of radiation. So far, it's not so bad. In fact, I kind of like the fact that I have to get up every morning to do it, because that way, I can get myself on a decent schedule for Violet. Even in limbo, I'm a mother. That will never change or become less important. My daughter and my husband are really all I need, most of the time. I know that when this is all over, I'll have to return to that other world, so I'm doing my best to enjoy the solitude of this one. Even though I know I'm going to get better, and it's what I want, I sometimes wonder if I'll miss the quiet of this space. Even though I still have a long way to go, it will be over before I know it, and I'll have less time for such introspection. There are things I want from this. Not just my life...that's a given. I want to learn to let things go, release burdens, move on, and grow. I want to shed the self-doubt I've carried all my life, embrace my strengths, and become the best version of myself that I can. Being able to do that seems even more daunting than cancer, sometimes. Nevertheless, it's what I need to figure out how to do. I must be careful in what distractions I let through, and I must learn a new way of living. I've shackled myself long enough.

I get a lot of people telling me that they don't understand how I manage to laugh and smile as much as I do. I have a hard time answering that one, because I don't know how else to be. In fact, I've feel more at peace than I have in a long time. No, I don't enjoy having cancer. Maybe part of me is just relieved to have a break from the mundane. I'm sure that must seem very weird, but it's true. I get to stay home with my baby girl, and be here to see all the things she does and learns. I have the freedom to work on jewelry and art. Yes, money is tight, but that's nothing new. I'm enjoying my quiet life, with my awesome little family.

So, I guess that's enough rambling, for now. I think I'll finish my cozy beverage and try to get a nap in. Yesterday, the radiation machine was down, so I got a day off. I doubt it will happen two days in a row.

My Favorite Freckle

The hospital gowns are quite cozy when you wear two of them

On Wednesday, it will have been a month since surgery. I'm no longer taking pain medication of any sort, even though I'm still uncomfortable a lot of the time. The mobility in my arms has increased significantly, although the left one is lagging a bit, due to the removal of 14 lymph nodes. It's taking a while for the glue left from the surgical tape to come off, because my chest is still very tender, and I can't really scrub it off...but it's slowly washing away to reveal clean skin surrounding the two large scars, where my breasts and nipples used to be.

Before surgery, I half-jokingly asked my surgeon if I'd get to keep my favorite freckle. It sat just to the right of my right breast, just a couple of inches before my armpit. I don't know why, but I always liked it. It was cute. She said I could keep it, and I smiled about it, even though I knew I'd be losing so much more.

As I began my recovery, I could not see whether it was still there, or not, due to the surgical tape. The tape eventually came off, but as mentioned above, the sticky residue lingers. I thought about my freckle, and occasionally wondered if it had survived the operation. As more time passed, I began to think that it was probably gone, and decided to dismiss it.

In this parallel existence, there are days full of color, and days in which it's all been coated in a wash of gray. Both leave me feeling full of experience, but disconnected from the real world. This is not a bad thing, really, but sometimes I need to feel human again. I need to feel like I'm real. The things that bring me that feeling, come in various shapes and sizes, different lengths of time, and some are complete surprises. Sometimes, they snap me into my body with a vividness, and a full breath. Life flows in, clearing the sleep from my perception.

Today, that moment came, after I got out of the shower, and began getting dressed. Before covering my chest, I examined the changes in tape residue, and remembered my long, lost freckle. Looking in the mirror, I turned my attention to where I felt it should be. At first, I didn't see it, but looking more closely, I could see how the shape of everything had changed. The place where my freckle had been was gone, but the freckle itself, had in fact, just moved a little. The tape was clearing from where it now sat, exposing the little brown dot I had periodically wondered about. As I leaned into the mirror, I touched it, and tears came to my eyes. Maybe it's silly that something so small meant so much. It was certainly unexpected...but I cannot describe the relief that washed over me to see that I had one more thing I get to keep. I smiled through happy tears, as I was snapped back into my former self just long enough to really feel alive, and then the vividness rippled, and the haze of non-reality took back over. I came back into my parallel place, carrying a gift to sustain me for the day.

The rest of the day brought a trip to the Cancer Center, with its friendly staff and large, mysterious machines, followed by some bizarre exchanges with friends. There was an argument with one, a misunderstanding with another, and a warm visit with yet, another. All of them ended more positively than they began, which is a good thing, all around. Now, as I should be heading toward bed, I am reviewing the events of the day, and I'm realizing how some of the people in my life have been like my freckle; not always in sight, and sometimes faded from mind as time passes, but no matter the circumstance, the resurfacing is a happy surprise that snaps me back into where I need to be.

There it is!

Somewhere Between Comedy and Tragedy

We fed each other cake! Photo by FX Vargas

There's something about a warm chai latte, especially this time of year. November is the month for cozy things and savory comfort foods. I'm not entirely certain what this one will bring, but a lot of things are uncertain, these days. This isn't necessarily a bad thing.

Surgery was about two and a half weeks ago, and the time has been intensely full. My mom was here for the first two weeks, and my sister for a few days. It's been a rough recovery, even with the added help. It was only yesterday that I began working toward regaining the use of my arms, and I've been able to pick up Violet a few times. That was the worst part...not being able to pick her up. I'm glad that part is over.

I'm still in pain, but it's getting better, and I'm weaning myself off the narcotics. There's a spot on the back of my left arm, just above the elbow that feels prickly and strange, and my sternum aches. Sometimes, it feels like I still have breasts, until I look down, or touch my chest, then I feel that same prickly sensation, only less intense. There's really nothing there, but two long scars, stretching across the concave places where my breasts once were. I'm nowhere near as horrified as I thought I would be, but it is quite surreal to look at. Every time I undress in the bathroom, I see the strangest reflection in the mirror, and I am instantly transported to some sort of bizarre dream-scape. I'll be attending my first support group meeting, later this month. I had to come to the conclusion that I can't keep doing this on my own. Talking to women who have been here really helps me. I'm ready to reach out.

Even with all of this, there have been wonderful things happening. In the time since surgery, I've had the opportunity to see some incredible musicians perform, and even met a few (including one of my favorites), my beautiful baby turned one (we had one hell of a baby birthday bash), and I celebrated seven years of marriage to my wonderful husband by taking Violet and my youngest stepson out trick-or-treating. It was all very exhausting, and I know I overdid it, but it was so worth it! I got to experience multiple once-in-a-lifetime events, while simultaneously living through one of the most difficult.

With Seth Siro Anton of Septicflesh

That seems to be a recurring theme in my life; the juxtaposition of immense joy and shattering pain. Oddly, I am grateful for both. It's not that I wanted cancer, and I certainly didn't want to watch my brother die, a couple of years ago. So, perhaps I should clarify: I am grateful for the beauty that finds me, even when in the depths of darkness. There is so much to learn from it, and so much to see. I hope I use this time wisely, as there is much that I can glean from this experience. Of course there are times when I fall apart. Who wouldn't? I think falling apart from time to time is just as important as laughing and smiling.

Believe me, I'm not rainbows and sunshine about this, all the time. It is serious, I know. It's also very hard. However, with all the love and support that I receive on a daily basis, it's impossible not to feel humbled, thankful, and warm. When this is over, my next challenge will be in finding the best way to live my life in a manner that fully earns all that I have been given from those who don't have to care, but do, anyway. I've still got a long way to go, before I am done. Again, I hope that I can use this time wisely.

My little faerie-bug!

Inside

“6:58, are you sure where my spark is?” Tori asks, when it's really closer to a quarter-to-two. My tea is still too hot to drink, but I've got the last of the chocolate chip cookies to keep me busy while I wait...waiting, waiting, waiting...

Daryll asked me how I'm doing. It wasn't just the on-the-surface “how are you doing?”. It was much more like the serious, “what's going on inside you?” way of asking. I don't remember how I answered, exactly. It was a long string of verbal thoughts floating, dancing, spinning, and hovering, and then coming to a halt at a simple “I don't know”.

The operation went well, my hospital stay was smooth, and I'm healing without a hiccup. I'm at home now, and I'm doing my part in taking care of myself in the areas where outside help can't reach. There is so much outside information on how I'm doing, but none of it sheds enough light to see how things are on the inside. Right now, I'm living on whispers, hints, and obscurities, where the truth of how I am is concerned. Even the microscopic icicles seeping into my veins, don't really clear the fog.

I won't say there aren't emotions, because there are, but all I'm getting are fragments. There is so much happening...so much, that I can't pin it down. The mental and emotional white noise rising behind the Percoset haze has me aware that preparations must be made, but I have no idea what to prepare for. Of course, there is a very obvious element of horror to the whole situation. My breasts have been removed, along with the nipples. In their place, are a couple of dents in my chest, each one with a diagonal scar reaching from one side to the other. Over this, I am bandaged and bruised, and there are drainage tubes suchered into my armpits. At the end of each tube, is a squeezy little container that must be emptied a couple of times a day. Yes, it's a rather disturbing sight, I suppose. However, I knew this part was coming, and had been over it countless times, so I didn't go to the surgery table naive.

As I do with every major situation, I spent some time comparing it with George's death. Nothing compares to the pain of watching your baby brother die, but I handled his passing a lot better than I ever would have guessed. I've noticed for a while that I have been handling breast cancer with significantly less grace, at least where the mastectomy has been concerned. Sometimes, when having a fear moment, I've reminded myself that losing my breasts is horrible, but George lost a sixth of his brain, and then his life, the following year. It has kept me in-check, most of the time.

Perhaps the emotions are so mixed because this particular cancer story has a lot of events taking place. Every day, my daughter brings me unparalleled joy. Could it be she, who is fortifying my spirit with her indescribable beauty and unconditional love? I am surrounded by support, the likes of which I never would have imagined, and it has been unbelievably touching.

On the darker side of things, I'm having to deal with cancer for the second time, and this round is costing me body parts. Recovering from surgery, so far, has been a lot better than I anticipated, though it is definitely uncomfortable and a little gruesome to look at.

So, no...I really don't know how I feel. I don't know if I'm going to be able to keep my chin up, or if it's all going to slam in on me when I least expect it. Is it really of any importance whether I know, or not? I might be doing okay, or I might be a crumpled mess, tomorrow. Does it matter which, as long as I work actively toward getting past this? This is temporary. I know it will pass, and I will emerge from this chain of events as a stronger, happier, more determined person. In the meantime, I'll take it all as it comes, and do what I have to do in order to stay afloat. I've got a long way to go...one foot in front of the other...