My Journey Through the Fire

I am on cloud nine today.  I can’t even begin to explain how good it feels to be back in “normal life”.  Every boobie fill I feel more and more like myself.  Looking in the mirror these days I’m no longer shocked by the stark reality of my mastectomy, but rather filled with joy at the perky new ladies who ride so high upon my chest.  Who knew boobs had such an effect? Most teenage boys, I suppose, yet I digress.

I also received really amazing news today.  We had a bit of a scare last week.  I didn’t want to say anything until we knew one way or the other but when I had my biannual ultrasound of my ovaries and girl bits they found a mass on one of my ovaries.  It was a year to the day of my cancer diagnoses and I found myself alone and frightened, sitting in the dark room waiting (again) for the Radiologist.  They think it’s just a cyst, however they will be tracking me more closely now and I will have another ultrasound in six weeks instead of six months.  But here’s where the good news comes in; I had a CA125 test done earlier this week to track any tumor markers in my blood and we just found out my numbers are in the “normal” range.  They’re double what they were six months ago, but my Gynecologist assured me they’re still normal.  Phewww.  This one really terrifies me.  Breast cancer is a nasty beast, don’t get me wrong, but ovarian cancer is a whole other monster.  One I’d really like to not tangle with.  

So here I am, cancer free, sun shining, birds singing, peonies blooming on my desk and all I can feel is gratitude and love.  For everything.  We are so truly blessed, you just have to change your perspective to see it sometimes.  This life is a gift, and I intend to live mine as such. So much love from me to you all <3

I realize it’s been a bit since I’ve posted something purely positive.  I try to do my best to be honest and to share the struggles as well as the gains and today I want to share my gains. 

What I am grateful for today:

• EVERYTHING. Seriously though, I truly am.
• Sunshine on warm skin.
• The sound of birds singing outside my studio.
• Jazz, well actually pretty much all music, but especially jazz.
• Looking up from work to see my beloved working on our garden.
• Stolen kisses from my children throughout the day while I work.
• Boobs and curls, both of which are now gracing me with their presence.
• My incredible body that can bounce back from anything.
• My selfless family; Mom, I’m talking to you.
• The ability to make my art for a living.
• The amazing new woman who is going to help make my business more fun and less stress.
• The phenomenal women I have met along this journey that inspire me with their strength every day.

What are you grateful for?

Wow, there are good days and then there are bad days.  Today was a B.A.D. day.  Last Thursday I underwent surgery to have the chest expanders placed under my pectoral muscles and to begin the slow process of reconstruction. The surgery went really smooth, I woke up quickly from the anesthesia and felt coherent right off the bat.  The first night I stayed at OHSU and was able to get up and move about by myself and I was released to head home early Friday afternoon.  The drive home was a piece of cake, I had visions prior to the surgery of a drug hazed me rolling about moaning in pain in the backseat; not quite the case.  I stayed wide awake and chatted with Chris and my Mom the whole way home.  

Monday was the turning point.  I hate pain meds.  I’d make a really poor junkie.  I just can’t stand being on any medication that alters reality.  So after two days of meds I decided to come off them cold turkey and rely on Tylenol.  I also had my once every three weeks infusion of Herceptin which really was like kicking a dead horse.  By the afternoon I felt terrible and was a puddle on the couch.  

This morning I woke with, for lack of a better term, an impending sense of doom.  There was a little black rain cloud hanging over my head from the moment I opened my eyes.  I spent most of the morning sobbing to my Mom and feeling sorry for myself.  I try so hard to be a champ, to take all the licks cancer has to give and look back with a “is that all you’ve got?” but sometimes this disease just fucking lays me flat.  Surgery, anesthesia, herceptin, fear of recurrence and of course, my period; all on one day.  Needless to say, I was a mess.

But then something happened, the sun came out and my incredible husband began our front yard makeover.  I sat in the sun, tears streaming down my pale cheeks and tried to remember why I fight this fight.  Why I get up every morning and keep going. It’s simple; because I can.  I’m alive and as much as I may feel like shit, that’s something.  So I wiped my snotty nose, got my pitiful ass off the lounge chair and put on some blush and lipgloss.  If I’m going to fight this horrific fight, I’m at least going to look good doing it.

Throughout this process I have had a goal in mind, a finish line if you will.  When all is said and done, when the infusions have ended, the port is removed, there is hair on my head and air in my lungs I will be done with this chapter of my life.  Part of that closure includes getting some semblance of my body back.  I oscillated on this one for months and depending on the day, hour, minute I was either for or against reconstruction.  

Now I differ from most of the other young women I know in my shoes because I chose to do a delayed reconstruction.  For me it just made more sense and I really wanted that time to be present with my new body and mourn the loss of my breasts.  It’s been nine months now and I’m ready to move on.  

I know that my breasts do not define me.  I actually think I look really lovely without them, but I don’t feel like myself.  My clothes fit differently, and the reflection in the mirror doesn’t match the image I have of myself in my heart.  For all of these reasons I have chosen to undergo yet another surgery and move forward towards my finish line.

Earlier this month Chris and I went to OHSU to meet with the head of their Plastic Surgery department.  I made the decision to travel out of town because my previous experiences with the local Doctors hadn’t been extremely heart warming and I wanted to to see if there was a better option, for me.  The Surgeon at OHSU was fabulous.  She was warm, compassionate and understanding of all that I had been through. She was also much more experienced in reconstructions and had some ideas about surgery that the other Doctors had never mentioned.  I left her office feeling for the first time, that there may be light at the end of this tunnel after all. That in a few months I may look like myself again.

So here we go, final chapter of this story.  (Truly, I’m so over this whole cancer thing).  April 18th I will be in Portland having surgery to place the expanders in my chest.  From there I’ll have a couple weeks of down time, multiple trips over the hill to get “fill ups”, (this makes me laugh every time) and eventually one last surgery to swap the expanders for my Pamela Andersons ;)

I haven’t been writing much these days because as things calm down, there isn’t much to write about.  I’ll take dull and boring any day of the week.  However, this week there’s been a bit of activity, so I thought I’d share.

My back has been killing me.  For the last five or six weeks I’ve had a dull aching constantly that riles up to a decent stabbing pain by the end of the day.  Normally this wouldn’t bother me too much.  I’m not sure if you’ve noticed, but I have a high pain tolerance.  The fear with this pain is that it was radiating from the center of my spine, not my muscles but my actual spine and that’s new for me.  Her2+ cancers really dig the spine as a spot to settle in and metastasise so every day in the back of my mind there’s been a little voice whispering, “it’s back”.  

When I met with my Oncologist last week he agreed that the pain was such that he felt an MRI would be a good choice just to see what’s going on.  He also told me that he truly didn’t think it was cancer, but we’d better check just to be sure.  So of course for the last week I’ve envisioned this little octopus of a tumor intertwined in my spine, (terrible, I know).  At seven o’clock this morning I was strapped down and sent into the tube of claustrophobia.  And then we waited.

It’s not cancer!! Not that anyone but my self doubt thought that it was, but they did find out that my back is completely jacked and there is a valid reason for all the pain.  I have some degenerative disc disease going on along with some “fissures” in my spine.  Sweet.  Off to meet the spinal specialist and possibly surgeon.  

It’s so strange, last year if you’d have asked me I would have sang the praises of my healthy body.  Nothing wrong, no surgeries, pure perfection.  Every day since I’ve learned how wrong I was.  Oh well, I’ll take daily back pain any day over cancer.  Bring on the pilates!

I’ve always taken parenthood very seriously.  My husband and I have been entrusted to help shape and mold these two beautiful little souls into people who will better this world through their grace and loving spirit.  Not a light task.  Even before cancer I was aware of every moment they were watching me, studying me to learn how to be better citizens of this world.  Now however, I feel a new sense of urgency.  I’m afraid that I may only have a fraction of time left with them and all the lessons I had planned out over my lifetime must now be imparted while I’m here.

This morning my eight year old daughter was caught back talking her father and sharing only a glimpse of the attitude I know we are in store for.  I tried to explain to her how she had hurt his feelings and was talking with her about how our actions have an impact on others, but she was only half listening.  I could see in her little brown eyes that she was placating me while internally she was planning her day with her friends.  It broke my heart.  I NEED them to hear me, while I am here to be heard.  

I’ve thought of writing them letters; every time I have a thought that I know I will want to share with them down the road.  Yet I’m afraid.  I’m afraid that in that act I will allow my mind to accept the fear that the cancer will return.  That my children will have to live their lives without their mother, without my love and protection.  So instead I choose to make each moment as meaningful as possible.  

Driving them to school this morning, tears streaming down my cheeks, I made a plea to them.  Listen. Listen when I speak.  Promise me that you will treat others with the love and respect that you seek.  Know that if you do this one small thing it will shape every relationship in your life moving forward.  Do this for me.  So that I will know you will hear my voice, even when I am no longer here to whisper in your ears.

I’ve often wondered lately if I will ever transition back to normal life.  Physically I’m getting there; I’m easing back into work, I’ve been working out and being a mother to two children.  It’s the mental baggage that gets me.  

If my cancer is to return it obviously won’t be in my breasts.  It could be ANYWHERE.  Her2+ cancers tend to metastasis in the brain, bones or lungs; joy.  I won’t be having regular scans to check for cancer, it’s just up to me to be aware of my body and any new pains that don’t make sense.  Now imagine if you were told to go on living your life and to do so without cancer on your mind, but oh, be sure to notify the doctors immediately if there’s any pain because you could be in real danger.  Not an easy task.  There is a pinpoint of balance between living in fear and remaining optimistic.

These past two weeks I’ve been having a strange back pain.  I haven’t done anything new that would explain it and it isn’t muscle pain, it’s on my actual spine.  Try as I might, I have spent every second afraid that the cancer has come back.  In order to ease my fears I met with the Nurse Practitioner at the Oncology Department yesterday evening and she felt it was a good idea to have an x-ray of my spine.  So off I went to the Radiologists at 4:30 on a Friday, terrified.  

The sun was setting as I was driving back to the Oncologist’s office for my results and I had the most profound awakening.  I may die.  Not today, not tomorrow, but sometime in the near future, I could die.  This may have been my life.  Now this isn’t the first time I’ve had this realization, but it was one of the few where I felt at peace.  I’ve been very blessed in my short life and I have loved deeply.  I’m surrounded by people who hold me in their hearts and that knowledge has brought me serenity. 

My x-rays didn’t show anything unusual, which is great news.  They’re not sure why I’m in pain, but if it continues I’ll go in for an MRI.  Now it is up to me to be present with the pain without allowing my mind to visualize the cancer spreading.  Quite the challenge.

I have done so well through this entire journey by not getting angry.  When I was first diagnosed I didn’t have that “I’m angry with the world” reaction; I’ve never even been angry at the cancer.  It’s not like cancer is a being that chose me to attack, it just happened.  I’ve done so well, but now I’m mad.

People have been so incredibly rude to me since my hair began to grow back.  They scoff, stare, recoil and are just all around assholes.  I’m sorry that I had the misfortune of being young and tattooed when I got cancer, but maybe think before you act/speak.  Not every tattooed girl with a shaved head is a f’n skinhead.  Some of us just spent the last six months fighting for our lives. It’s not easy walking out into the world without hiding what you’re going through; that takes strength. Some of us have done everything in our power to be present for our families and friends and deserve a little compassion.  

Which brings me to my next tirade: my plastic surgeon.  I have been waiting for six months to meet with my surgeon and discuss my reconstruction. For six hellish months I have looked forward to the finish line, the moment where I get to start building my body back to some semblence of “normal”.  Today was that day and my surgeon came in treating me like just another girl and was not amused with my list of specific questions.  I’m sorry; I’m about to have a huge, elective surgery; what kind of moron doesn’t ask questions?  He never once acknowledged what I’d been through and he spoke to me with not an ounce of compassion.  Excuse me bud, but I’m hiring you, not the other way around.  The least you could do is treat me with a bit of understanding and patience.  I’m not asking a lot.  Are you going to treat my body the way you do my person? Quick and rough? I now have a mental image of the surgeon slapping my muscles around during surgery, as if my poor chest hasn’t been through enough.

This last one isn’t directly cancer related, but it sure feels like a kick in the teeth when I’ve been fighting for my life.  I’m an artist by trade, I work in metal and I pride myself in  my unique designs.  When I’m designing a new line I go to the library and check out books on various artists, architects, sculptures; I study lines and shapes, color and texture.  I don’t get online and start studying other metal worker’s pieces and doing my own variation of their work.  Since I have been down there have been multiple artists who began reproducing my work.  Some of whom would at the same time send me emails telling me they’re praying for my recovery.  That’s just dirty.  I know that in art we’re all “inspired” by something and that people will say everything has been done before, but I believe in being morally sound in my work and my life.  I once worked for another designer and I’ve had to build my line to stand on it’s own two feet, knowing that it needed to stand apart and represent my individuality.  Stealing is stealing and stealing from a cancer patient is a new level of ugly that I didn’t think existed.

I try to use this blog as a place to express myself and share my story.  I do my best to be as positive as possible, but I need to also be honest.  Please, let’s all do our part to treat each other with kindness.  Don’t automatically assume that the short haired girl next to you is a skinhead, know that maybe someone might be dealing with something greater, something you may know nothing about.  It breaks my heart that we live in a society where people feel they need to live every moment armed with a weapon for fear that others are out to get them.  Maybe instead we could just try treating each other the way we ourselves would like to be treated.  Come on people, my five year old understands this concept, why can’t we?