Mosaic

People ask me how I’m doing and I don’t know what to say.  How am I doing?  It’s a loaded question because it assumes that I have a scale of what normal is that I could base my response on.  But, I don’t remember what normal feels like anymore.

How am I in relation to being terrified that the next step in my journey is going to be infinitely worse than the one before?  Good, really good! The worst is over.  I am grateful and humble every day that I will walk away from this battle.  Do I have battle scars?  Yes.  But I’m still walking away and that is the greatest gift ever.

How am I in relation to who I was?  Different, really different and that takes some getting used to. Have you ever dropped a cup or a dish on a tile floor and watched it shatter? The last year of my life has been the slow motion decent toward the inevitable crash. I try not to be quiet from too long because the moment of impact replays over and over in my mind.  I relive the sound and fear of the shatter and watch the pieces skid across the floor.  One day, I’ll probably put it to music and make peace with it, but I am not there yet.  Healing comes in stages, and I’m not ready to dance with the crash, not yet.

For now, I am focused on picking up the chunks.  Thankfully, I have an incredible group of friends and family to help me search the floor, sweep up the mess, and find the scattered shards.  For now, I am looking at my pile of broken parts and trying to figure out what I should do with it.  I have a couple of options.  I could try to glue it back together.  I have enough of the chunks that I could probably make them into a cup again.  Sure, it will always have cracks and scars and I don’t know how functional it would be. But at first glance, if you don’t look too closely, you might not notice.

But that really isn’t me. In all truth an honesty, there is no going back.  I could try to put the pieces together but I’m not the type of person that can live a cracked and broken life. If I’ve learned nothing else I’ve learned that life is short and precious.  I’ve learned to make every minute count because there are far less of them than anyone expects.

So, I am left with option number two, make a mosaic.  When you can’t go backwards, go forwards. Take the pieces that remain and turn them into something new.  Maybe how I’m doing isn’t nearly as important as what am I doing?  I’m working on picking up the pieces of my life, taking stock of what is there and what is missing, considering my options and ultimately working on making something new.

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You Look Radiant

If you ever find yourself with cancer you might get the distinct pleasure of getting to experience radiation as part of your treatment. As it turns out, the decision of whether or not to do radiation is based on your initial pathology. It doesn’t matter how well your body responds to chemotherapy or if the cancer is no longer visible when they cut out the infected tissue.  If radiation was decided in the beginning, radiation is what you get.

Medicine is not an exact science.  Although there is much we know and much we have learned, sometimes the best we can hope for is just statistical guesses, best practices, and the standard of care. Over time, statistics have shown that women with XYZ type of breast cancer have a better statistical chance of it not coming back if they do radiation.  At best, radiation is a balancing act and a bit of a guessing game. As it turns out, studies indicate that the magical number of radiation treatments that the body can endure without getting completely poisoned is about 30, that’s the threshold.  Or, that’s just what insurance will pay for.  You aren’t completely sure.

Radiation is cumulative.  You need to build it up in your system, over time.  The best way to do this is to go every day, Monday through Friday, (not the weekends because everyone could us a little break) for six weeks. But if you wait much more than a couple of days in between sessions, your skin might start to heal, and that’s not what you want.  After all, the point of radiation is to burn you.  The doctors are looking for specific burns on your skin.

In the past they would make a map of where to burn victims patients, by tattooing them, now they use sharpies and stickers. When you first see the radiation map on your skin it looks like that time you got drunk, passed out, and since your friends are assholes you wake up with sharpie all over you. (Except there are no penis’ drawn on you, just a bunch of dots and lines in different colors.)

It’s a treasure map for the pirates of radiation, except instead of digging, that’s where they’re going to burn you.   You of course protect this map with your life. You do everything in your power to keep it from rubbing off, washing off, sweating off, oozing off, and finally peeling off when your skin can’t take it anymore.  Every day you inspect the map, and try to re-stick stickers or re-draw dots and lines that might be fading.

Radiation treatment is a controlled burn. Like firefighters taking to the forest floor before burn season, you are spraying all of the surrounding area with a flame thrower trying to prevent any seeds that may have spread from taking root.  It’s very precise, it has to be because one or two millimeters in the wrong direction and you risk burning your heart, or lungs, or esophagus.  So no matter how much it hurts, or how badly you are in pain, you lie very still on the table and hold your breath when they tell you to.  You let them burn you over and over again, for twenty minutes, every day, for six weeks.

You’re unique cancer journey can be explain like this, cancer is an unwanted tree growing in your backyard, chemotherapy is like putting poison in the ground.  The tree soaks up the poison and hopefully dies. Next, surgeons come in and remove the tree.  They cut it down, and scoop out as much of the roots around it as they can. Then, they remove the places the roots might have spread. Surgery is the cutting down and removal of cancer tree.  After surgery, you are technically “cancer free” as long as they don’t see any more signs of the tree. The final step in your fight is to take flame thrower to any area the wind may have spread a seed.  At the microscopic level, cancer could be hiding in the skin, just waiting to take root and grow again.  The best way to ensure that doesn’t happen, is to burn the skin and the tissue underneath in all the surrounding areas.

It’s funny, at the time of diagnosis everyone dreads chemotherapy. It comes first, and it’s by far the most notable.  It gets all the top billing.  But radiation is like going to a concert where don’t know the opening bands, all you know, is the headliner.  You decide to go early check out some new music.  The opening band comes on and your world is rocked.  You are their newest, biggest fan. You head straight to their merch table and can wait to get your hands on a shirt.  Amazed, you are changed for life.  Then you go on with the show and enjoy the headliner you came to see. It isn’t until after the concert that you realize that while the headliner was good, it was exactly what you expected.  It was the unexpected opening band that really blew your mind because you never saw it coming. Chemotherapy is defiantly the headliner, but radiation is the unexpected opener that kicks your ass in ways you never dreamed possible.  Everyone seems to think if you made it through six months of chemotherapy, and you made it through surgery, radiation is just a drop in the bucket!  Insert Trump GIF Here, “Wrong.”

In the sickest of cruel jokes, you are given about ten weeks to recover from the most horrendous trauma of your life, a double mastectomy.  To be fair, it’s just to let your skin heal, it’s going to take you a lot longer to fully recover.  But your body has about ten weeks to get over it.  The first six are the worst.  Amid heavy pain-killing medications are draining tubes that have to be milked, spit baths, and weekly injections of saline to stretch your skin draped over the expanders that are stitched to your pectoral muscles. But as you move into your seventh week post-surgery, the pain subsides.  The skin has scabbed over where the tubes were removed a couple of weeks ago. You have weaned yourself off of the heavy pain medications and are now only taking Tylenol a couple times a day. You’ve gone back to work and have started to feel somewhat normal again. You’ve survived a war zone and earned two-weeks leave. It’s so amazing after that after a six-month tour, you have this reprieve.  You go out, start to see your friends again, life as you once knew it flows back and you see a flicker of it once was.

You are now eight weeks post-op.  Your skin will not be stretched any more, it’s time to start radiation. You tell yourself, it’s only six weeks. No problem. The doctors say you probably won’t even feel anything for the first couple of weeks.  Derby up, you got this.

The first three weeks of radiation pass by.  You’ve noticed that you have started to get tired again, but this is a different kind of tired than it was before. This isn’t sickly like chemotherapy.  You don’t feel like you have the perpetual flu, it feels more like you go to the gym every night, and people take turns punching you. Radiation doesn’t hurt at the time.  It’s more like an intense workout, about 20 minutes after you’ve finished, you start to feel the burn.  You’re tired after your workout and try to sleep it off.  You hope you’ll feel better in the morning.  And you kind of do.  For the first three weeks, you actually do feel a little better in the morning.  But this has become your existence. Every day you go to work and attempt to live your life, and then every night you go to the gym and let people take turns punching you.  Day in, day out, Monday through Friday, for six weeks.

About three-an-a-half weeks in you start to notice the burn doesn’t fade overnight anymore. It’s red, warm to the touch and a little itchy. You can see the pink building up on your chest and underneath your arm.  By the time you are four weeks into radiation treatment, the areas that were pink are now red, and the Aloe vera doesn’t help the burn for more than a few seconds. You are exhausted from your daily ass-kicking.  (This is no longer a daily workout, this is just a daily ass-kicking.)  By five weeks in, it feels like the pain has gone from linear to exponential growth almost overnight.  It wakes you up in your sleep and there is no way to get comfortable.  By the end of the fifth week you have started to blister and peel in areas where the skin isn’t as thick.  The name of the game becomes prophylactic care and you try to keep as much of your skin as possible from blistering and rubbing off. There is no longer a comfortable way to sit or lay down, and standing is just out of the question.

You begin your sixth week. You’re body has been to hell and back. In the last eight months, you have been poisoned, stabbed, beaten, and burned alive.  You have one more week. Only a crazy person would go back for more.  Who in their right mind would show up?  But Monday is coming.

It has only been with the help of some really good friends and of course your family that you’ve made it this far.  They have held your hand for the last eight months and have journeyed with you to these, the last three weeks which are the hardest, cruelest, most intense and awful piece of this entire experience. You’ve almost made it to the end, but you have nothing left to give.  You have done your best to fight, but you are tired of fighting.  You are tired of hurting, and the pain is like nothing you have ever experienced.

You will never figure out the words to say thank you to the people who are there for you. It blows your mind how in this, the last stretch of this horror-marathon, the people who love you the most step forward, hold you up, and carry you across the finish line. They take the day off work and come stay by your side and cuddle up and watch a movie.  They make you laugh when all you want to do is cry.  The pain your toenails.  They become your own personal lyft and grub hub.  They take you to your appointments and feed you, and they take care of your kids (both two and four legged).  If they can’t be there in person, they message you let you know they are rooting for you every step of the way.  They are the friends who tell you not to worry about anything, to just take care of yourself.  They tell you to stay focused on just getting through it, and they mean it.

You are NOT alone in this war.  You are at the point where you are blistering and peeling and hurting 24 hours a day, but you have back up. You have people in your corner backing you up, dragging you forward, and cheering you on.  They remind you every step of the way that you can do it.  Somehow, with a little help from your friends and family, you will manage to woman up and show up on Monday, for your sixth, and final week of ass kicking. That, is beating cancer.  You’ve gone from three weeks down to one.  You have seven more treatments to go. Barring something horrific (like having to get mapped again because your skin is now so blistery and peeling you can’t keep the map on) you will be done in seven sessions.  You’re down to single digits. 7…..6……5……4….3..…2…..

See you at the finish line.

*Fingers crossed*

 Tuesday, March 13, 2018. 

3:00PM

MD Anderson Cancer Treatment Center in Gilbert. 1st Floor, Radiation and Oncology.