My Journey Through the Fire

Last year about this time I had the honor of meeting someone who would become a very beloved friend to me.  This incredible man has taught me many things, about cancer, about life and not least importantly, about growing tomatoes in Central Oregon, (it’s not easy).  My dear friend has had a rough year, well a rough nine years if we’re counting, but the last one has been especially tough.  Through all of his own struggles, he has met with me for coffee and we’ve discussed pretty much everything.  Tonight I couldn’t get these words out of my head and knew that I needed to my dear friend to hear them.  I thought there might be something there that is of use to you all and so I am sharing; my letter to Gary:

Over the last year I’ve spent many a moment pondering life and it’s meaning.  Why were we put here and why must some of us suffer so? Having you as a dear friend has brought that last question to the forefront more often these days.  Why did cancer strike such an incredible man, a kind and generous man who would give anything to help someone else. Why him? I know you and I already know you’re thinking, “Why not me?”  And you’re right; there is no rhyme or reason to all of this, it just is.

This gets me thinking on the teachings of the Buddha; that life is suffering.  When I think back on time upon time it seems to be the one theme that threads itself through the fabric of time, suffering.  Yet there is another color interwoven with all that suffering, and that is love.  Again, for ages when things have seemed at their worst and humanity has fallen to it’s lowest, there is always love.  This is what gives me hope and this is what helps me forgive the Universe when I am angry for what it has done to you my friend.  

I think about your girls and the amazing little sanctuary you have built for yourselves.  I think about the inside jokes that I have been blessed to hear tale of.  I think of the strength the women in your life possess to sit in the center of the storm with you; not for a month, or a year, but for many, many years.  They sit and hold vigil at your side because they love you.  You are loved.  That warms my heart and helps me to have faith in the Universe once more.  My little family has only felt a sliver of the struggles you and yours have been through, but through our long talks I have learned more than you could ever know.  You have taught me to savor the juicy bits, and to let the suffering be.  It is after all; no one can change that, as hard as one might try.  

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?

I’m now one month out from chemo and life is beginning to look so much brighter.  My energy is growing day by day and the moments where my mind is focused on cancer are fewer and farther between.  I’m starting to resemble G.I. Jane more than Powder, which is nice; although I notice people stare more at me when I have stubble than when I’m bald.  I’m convinced they think I’m a skinhead (tattoos and piercings).  I’m contemplating having a shirt made that reads, “Cancer not bigotry”. 

One of the greatest experiences so far is being able to work out again; to have the energy to move.  For the first time in at least five years I’ve started swimming again.  It’s comforting to return to a sport that I’m good at.  I don’t feel like I have to prove anything, I can just jump in the pool and lope along at my own pace.  Last week I was able to get in the water three times and swim over a mile each time.  It’s incredible to be sore from activity instead of inactivity.  I’ll take that any day.

I meet with my surgeons this week to discuss reconstruction.  I’m having mixed feelings regarding this, which is really surprising to me.  I thought for sure that I would have the surgery done, no questions asked, but now that I am coming out of this nightmare the last thing I want to do is go back in.  Don’t get me wrong, the thought of having breasts again sounds great, but if they are going to come at the expense of my ability to do anything in my life, I’m not going to do it.  

In order to focus on the future rather than being terrified by the past I’ve set goals for myself. I’m going to finish a sprint distance triathalon by the end of this summer.  I’ll have the swim leg down in a few more weeks, but I have to drag my lazy ass out of bed to go running in these arctic conditions.  Still working on that one.  Inspired by Pretty In Pink Terminator  I’m going to do the Susan G. Komen 3-Day Walk for the Cure  in Seattle this September.  I’m really excited about this one.  Three days, 60 miles and an opportunity to raise money and awareness to fight this horrific disease.  Whose going to join me? We can make it a mobile party! I’ll design some ridiculous getup for everyone to sport and we can do our part to kick cancer’s ass.

So it’s New Year’s Eve; the cusp of new beginnings, a fresh start, a second chance.  I am thrilled to be moving forward and to leave the last six months behind, but I do so with an air of acceptance and knowing that the last six months have not only broken me, but they’ve also broken me open.  I take away not only the pain and scars, but the gift of knowledge and of finding one’s self.  This new year ahead will find me slowly moving back into my life, but I will never be the same person I was and for that I am thankful.  

I hope that as I transition back into work that I do so with the understanding that it does not define me.  I will no longer work sixty hour weeks in order to please others; I will instead set my limits clearly from the beginning and make the time to take my children to their lessons. I will direct more energy towards activities that feed my soul: meditation, exercise, breathing fresh air and playing with paint and canvas.  

I will make an effort to treat each person I encounter in this life with love and compassion.  My journey has taught me that none of us understand the struggles of others.  We may think that we know what another’s experience is, but unless you have truly walked in someone else’s shoes, you can’t know all the factors that define their experience.  We are all worthy of love.  It would be of great benefit to begin treating each other as such.

My greatest challenge will be to treat myself with the love that I show others.  I have always been my greatest critic.  I strive for perfection in every aspect of my life and anything short of that is treated with criticism and ridicule.  Since I was a child I have set goals for myself and once I reach those goals I immediately modify them to the next level, never stopping to congratulate myself or bask in my accomplishment.  This need for perfection has obviously created a lack of self love.  I would never dare treat another person the way I do myself and I have often wondered over the past six months if that manifested itself as cancer.  I had cancer over my heart.

So now moving forward, I vow to break these cycles.  I vow that my inner voice will be one of compassion and patience; one of understanding that there is no such thing as perfection.  I vow to love deeply, to live each moment to the fullest and to never, ever again take a single moment on this Earth for granted.  

I’ve found that writing comes much easier to me when I’m feeling brave.  It’s easy to sit down and bare your soul when your soul is glittery and inspiring; it’s another thing entirely when your soul feels cold and alone.  Strangely I’ve been feeling pretty low since I finished my heavy duty chemo.  It’s as if I was so busy fighting these past few months that I hadn’t allowed myself the time to sit and focus on the big picture; all the symptoms, risks and effects of this disease and it’s treatment.  Now that I’m slowly crawling out of the abyss I am beginning to see things in a broader light.

My body has been ravaged.  By cancer, but more so by it’s treatment.  I’ve done my best to not complain; no one likes a whiner, but damn, this shit is hard.  A couple of weeks ago I went in for my weekly Herceptin infusion and my usually rock bottom blood pressure was through the roof. Combine that with the throbbing headache I’d had for days and the mysterious vertigo I’d been suffering with and my nurses were afraid I was going to have a stroke.  I was sent home with the understanding that there was nothing they could do at the moment but should anything change I was to rush to the nearest Emergency Room as quickly as possible because I might be bleeding out in my brain.  Sweet.  How do you explain to a five year old that if Mommy begins to look or talk funny that he has to call 911 and tell them I’m sick.  What a nightmare.

I go in for my second echocardiogram in four months next week.  Just to make sure the chemo didn’t do too much damage to my heart.  My fingertips and the soles of my feet have all peeled off and now look like those of a seventy year old woman.  While cooking dinner I’ll forget how sensitive they are and reach to pull the garlic bread out of the oven only to recoil in pain moments later.  I’m praying that they’ll recover enough for me to be able to begin working again in a couple of weeks; I’m a jeweler and my hands are my most precious tool.  Then there’s the obnoxious vanity issues I now face.  Somehow chemo packed on an extra 15 pounds in four months.  Seriously?! Not only do I have to deal with all this shit, but I get fat on top of it? Lame.  So now I can’t wait to begin working out to get all this extra baggage off, but my body is so weak that I can hardly walk a mile.  My eyebrows and eyelashes held on till the last round, but that was all they had in them.  I now look like Powder and when I find myself sobbing my eyelashes fall out with the weight of my tears and get stuck in my eyes.  What can I say, I’m a pitiful mess.

I share all of this not for sympathy, but so everyone knows that this is no cake walk.  Each day I do my best to hold my head high and fight with grace and courage, but there are many moments when I find myself crushed by the enormous weight of this journey and it is all I can do to stop crying and get back to life as a mother.  

Each day that I get farther and farther out from my last gnarly chemo treatment my perspective gets clearer and clearer.  I still have fear of the cancer returning but I think that’s fairly normal and it will be my goal to focus on the present and deal with the future as it unfolds.

More than the fear however, I’m feeling blessed.  I just spent the last five months at war.  I fought harder than I have ever fought in my life and I made it through to the other side.  Each second moving forward is a gift.  I keep thinking if I hadn’t found the cancer, where would I have been today? With as quickly as the tumor was growing/spreading; would I even be alive? Last night was my daughter’s annual talent show for her school and I sat there with tears in my eyes feeling so lucky to be there.  Just to be there.  This time last year I was working ridiculous hours frantically trying to fill orders and this year I’m with my family, it’s beautiful.  

There is also an overwhelming feeling of peace surrounding me.  Now that the terror of what might be has passed and I can clearly see what my risks are moving forward, I’m ok with them.  I was able to discuss recurrence with my Oncologist last week and yes, it’s a possibility.  With the kind of cancer I have it’s more likely that it would return quickly, within the next two or three years, rather than ten years out.  Now that we have that information we can sit with it and do everything we can in our power to keep it from happening.  And if it does?  I’ll fight again, and again and again as long as I have the strength to continue.  But for now, I’ll be busy living my life and savoring each juicy morsel.

So I just realized something this afternoon as I was finally beginning to regain consciousness from this last round; I’M CANCER FREE!!!! Just thought you might like to know.

It seems like an eternity, but I’ve finally reached the finish line with chemotherapy.  Tomorrow is my last big one.  I’ll still have my Herceptin infusions until August, but those are nothing in comparison.  As much as I know I should be dancing with joy and shouting from the rooftops, I have mixed emotions on finishing chemo.  I’m obviously thrilled to not have to endure anymore hellish weeks of recovery.  I’m grateful that I’ve made it through as well as I have, but I’m also afraid to stop.  While I’m in chemo I’m actively fighting the disease.  When I finish all I can do is sit and wait and pray that the cancer doesn’t return.  

This won’t be the end of all my cancer treatment, that will continue for the next five years in the form of hormone therapy.  Tomorrow I’ll have the opportunity to ask my Oncologist the plethora of questions that have been dancing through my head these past few weeks: 

• What will my screening process be moving forward?
• When will I begin my five year sentence of Tamoxifen?
• When will I begin the reconstruction process?

A chapter in my life is closing and it’s been the defining chapter of my life story thus far.  How do you just walk away from that? How do you go on with your life as usual and not live in fear every moment?  Will I really be able to return to normal life?  I have a feeling survivorship is going to take some getting used to.