The journey of a cancer survivor

Cancer has permeated the lives of many in my family.  Although most were diagnosed in their later stages of life, that is not true for both my sister and I.  My sister was diagnosed with breast cancer originally when she was only 31 years old.  Back then, roughly 30 years ago, the treatments were not as good as they are today and the options were very small.  After her initial diagnosis she had almost 10 years before her reoccurrence.  That “metastatic cancer” term owned the last few years of her life, before she died at the age of 46.  My last picture of my sister and I is at the Race for a Cure.  I remember watching her as she took part in the survivor photo.  I’ve participated in the Race for a Cure for years, but I won’t participate in the survivor photo.  It’s like a weird superstition for me.  I’ve walked in the 3 day 3 or 4 times.  I was asked to be a flag bearer for them.  Pretty cool.

I’ve always been really open about my entire journey.  I talked with friends who since have had their own diagnosis or a family member or friend.  I realized during all my surgeries and treatments that there is a lot that you aren’t told, that I wish I had been told.  So I figured if I could help someone else out, then I’m in.  Over time, I’ve also learned it’s important to see people years out of treatment to give help and perspective.  Some days you just try to make it through that day.  I’m proof of the future.

I have always been the active one of the family.  Good health with no major issues.  Well that was until January 2007.  I had been to the doctor in December because I could feel something odd just under my skin.  They sent me in for the usual mammogram which came up negative.  I knew it wasn’t right so I pushed them for other testing.  On to an ultrasound and a biopsy.

I was at work when the doctor’s office called.  I’m confident we talked on the phone for about 10 minutes as I had written a list of doctor appointments down on a piece of paper.  I don’t remember any of that call after he said “I’m sorry to tell you this but you have invasive ductal carcinoma.”  Weird how you fixate on certain words and then your mind just shuts off.   Code black!  I’ve learned plenty about that at work but this certainly was a different application with the same outcome.  Honestly only two things went through my mind.  The first was how was I going to tell my parents.  They had already buried one child.  I was panicked they would have to bury another.  The second thought was my kids.  They were so small, only 2 & 5 years old.  What would this do to them?  What would they remember about this journey?  Would they remember me?  I’ve always been a pretty confident and driven person but those 12 words rocked me to my core.  The tornado was just beginning and it lasted for 18 months.

The next five months is a total blur.  My life was controlled by doctor appointments, surgeries and chemotherapy appointments.  As the sole income provider for my family, not working was not an option!  Although difficult at times, it did provide a sense of normalcy in having a routine I recognized.  I found out I have the BRCA 1 gene, which makes me at much higher risk for breast cancer and ovarian cancer.  I’m sure my sister had it as well.  That gene carries risks for all the women in my family.  The oncologist told me all the options available and their impacts on my rate of reoccurrence.  I wanted no part of this to begin with so I certainly wanted no part of a reoccurrence so I took the most aggressive surgeries and treatments.  I was mad at the world.  First surgery was a bilateral mastectomy.  That alone cut my reoccurrence rate to under 5%.  That’s a crazy surgery!  No getting around it.  I had drains after.  Couldn’t get out of bed by myself.  Couldn’t lift my arms.  The big part is they don’t tell you that your chest is concave after.  It’s not flat.  Nothing near.  About 5 months later I had surgery to take my ovaries out because that is a silent but deadly cancer.  No real detection protocol until it’s too late.  Chemo puts you into menopause anyways so at this point they were just unnecessary.  Adding chemo to the mix dropped my rate down to less than 2%.  I didn’t have radiation.

In between those surgeries was 4 months of chemotherapy.  4 treatments that were 3 weeks apart.  I had the A and C treatments.  It’s called the “red devil”.  They aren’t kidding!  I show up for my first treatment.  I had a port placed in my chest so the chemo wouldn’t blow out the veins in my arms.  I’m just kicked back waiting for the oncology nurse to arrive, when this lady walks in wearing the most PPE equipment I’ve ever seen. You’d think I was in a nuclear lab.  I’m just in regular street clothes.  No PPE for me!!  She has on what can best be described as a space suit.  Two gowns, 2 pairs gloves, face shield, etc.  Nothing visible of her.  I asked why she was wearing all that and she said “because this stuff is so toxic it can’t touch our skin.”  Can’t touch your skin???  Are you kidding me?  You are getting ready to inject this into my vein, which runs right by my heart and drown my insides with this crap but it’s too toxic for your skin.  How about for my body??  Crazy stuff! First round takes about 2 hours and we head home. I’m actually feeling okay but starving.  We stop at Trader Joe’s so I can get some hummus and flatbread. Go home and wait.  The next day I feel like I’m getting the flu.  By day 3 I’m down for the count.  I’m have zero white blood cells so I have to go to the doctor’s office for a shot. As my treatments progressed these shots went from weekly to daily.  I was told I would lose my hair.  Over the course of 3 days I go from losing 5 hairs in the shower, to 50, to 500.  It comes out in clumps which results in huge bald spots on my head.  Not cool!  I decide to let my kids shave my head.  They think it’s pretty funny. I keep a mohawk for one last day and go to work!  During my treatments I was off work for 1 1/2 weeks (because I was sick and had zero white blood cells) then at work for the last 1 1/2 weeks before my next treatment.  My down time got progressively longer after each treatment.  Only a couple days for the first one.  Almost 2 weeks after my last one.  It is a level of sickness that is hard to describe.  I took a $300 anti nausea pill the day before each treatment and another one an hour before each treatment.  Nope insurance doesn’t cover those!  For the next 5 months I took a regular anti nausea pill every 4 hours.  Never threw up, but I have never felt so horrible in my life.  It’s like the flu times 1,000.  Never ending, no breather, can’t sleep, do not want to eat.  Everything tastes terrible. It’s like you are chewing aluminum foil.  For some reason I developed an insatiable appetite or chocolate though.  I could eat 6 Hershey bars in a day or a couple dozen chocolate chips cookies!  Crazy but so good!  (I still eat chocolate every day, just not 6 Hershey bars worth!) It takes you to the lowest of lows.  I can admit I wanted to quit.  Stopping treatment just seemed so much easier.  If that meant I would die that was okay.  It’s a terrible thing to say and an even worse feeling but it’s real.  People don’t understand.  They try, but they just don’t.  I belong to a club where we share different experiences but we have a  common bond.  We know. We’ve been there to that deep dark place.

I tried to live as normal of a  life as I could.  I needed it.  My kids needed it. I had 2 life changing experiences during my treatment that changed me on a dime.  They both brought perspective.  It’s easy to lose perspective because sometimes you just get swallowed up by trying to survive that you forget to breathe.

#1 During my third treatment I was not feeling good at all.  I was struggling physically, emotionally and mentally.  I was at the end of what I could take.  I was mad.  At everything and I knew it.  Normally during chemo treatments you have your own room because each person’s treatment is different and the infusion lasts for different lengths of time.  On this occasion I was in a room with another patient. He was 24 and getting a low dose chemo.  We were together for a couple hours so we started talking.  I was whining and complaining about how much this sucked.  He told me his story.  He was so matter of fact.  He had some back problems and was prescribed Oxy.  He became addicted and his life was out of control.  He met this girl and they decided to get married.  He wanted to change his life so he decided to get clean but the back pain didn’t go away.  After running many tests they discovered he had stage 4 colon cancer.  His tumor was huge and inoperable and he could not tolerate full dose chemo so he came in daily for a low dose.  He was given 6 months to live.  24 years old and newly married.  His whole life in front of him that he would never see.  He was going to make that the happiest 6 months of his life.  Perspective!  I was 42 at the time, married and had 2 kids.  I had been in a career I love for over 20 years.  I’d seen and done so much, but I was whining and complaining because life wasn’t fair.  Nope, life wasn’t fair.  I was sitting next to a 24 year old kid who wouldn’t live to see 25.  That life wasn’t fair.

#2  I was eating lunch at the Barking Frog restaurant in Woodinville after all my treatments were done but I was still bald.  It was a beautiful sunny day.  We were sitting next to a table with some obnoxious drunk people and I got up to go to the restroom.  Apparently I was the talk of the table after I left!  This was the summer Brittany Spears shaved her head.  This group was going on and on about not understanding why it was so trending for people (me) to shave their heads just because Brittany Spears did it!  Perspective!!  I didn’t look like a cancer patient!  It didn’t cross their mind.  I had cancer but it didn’t define me.

A lot has happened over the past 11 years.  Being able to say 11 years cancer free is awesome!  I’ve gotten to a point now where I’ve stopped counting.  Looking back I wish I’d had some more information to help me determine my path forward.  Doctors are great but they are focused on the clinical aspects and not the people aspects.  Some of the pointers I wish I knew back then are:

  1.  Don’t eat anything you like right before or after your chemo treatment.  You will  NEVER eat it again!!  Eleven years later I can barely look at hummus and flatbread without my mouth watering because it makes my nauseous.
  2. Your head freezes and does not like anything touching it!  Had to wear a hat at night to stay warm.
  3. These treatments and appointments screw with your mind!  It brings on serious PTSD.  The anxiety you feel around blood tests and scans is relentless.  It’s such a level of panic that you are going to hear the C word again.  Even 11 years later, with my latest surgery they did a tissue screening without my knowledge (thank god) but when I saw the word “pathology” on my paperwork, it immediately brought on that intense level of anxiety until I saw the words “no evidence of metastatic cancer”.
  4. Live your life–Tomorrow is never guaranteed.  Do everything you’ve always wanted to do.  Try things that are outside your comfort zone.  Don’t sweat the small stuff.  It’s not worth the time.  Let the BS and drama go.  That’s their problem and don’t make it yours!  Smile and laugh!

So here I sit 11 years later.  Had another surgery 2 months ago.  This is a two part surgery (last part at the end of February but it’s out patient) but it will be my last!  YAY!!  It’s called DIEP Flap.  It’s a crazy cool surgery.  I’ll let you google it and spare you the details except for the photo of my abdomen incision!

I’ve found over my journey there are a few things that just center me and make me feel at home.  The first is water.  This is my first home.  I spent most of my childhood on a boat.  It has significance to me in that it reminds me of years of great memories with my family and it just soothes my soul.  Water will always hold a sacred place in my life.  The second is my love of the outdoors.  I could hike everyday.  The old saying “the mountain is calling and I must go” so applies to me.  I love the peace of the outdoors, the smells and sounds.  It’s hard work to climb to the top of a trail, but the effort is all mine and feeling at the end is the bonus.  It’s part of why I started this blog.

This has been a tough two months for me while I’ve been recovering.  I’ve been grounded by my doctor and not allowed to exercise.  I’m finally allowed to head back out to the mountains!  Fresh powder, clean air and good friends!  I’m alive!

I’ve always been a big Kenny Chesney fan and he has a song that is my life.

I’m Alive

So damn easy to say that life’s so hard

Everybody’s got their share of battle scars

As for me, I’d like to thank my lucky stars that I’m alive, and well

 

It’d be easy to add up all the pain

And all the dreams you sat and watched go up in flames

Dwell on the wreckage as it smolders in the rain

But not me….I’m alive

 

And today you know that’s good enough for me

Breathin’ in and out’s a blessing can’t you see

Today’s the first day of the rest of my life and i’m alive

And well…I’m alive and well

 

The stars and dancing’ on the water here tonight

It’s good for the should when there’s not a should in sight

This boat has caught it’s wind and bright me back to life

now I’m alive and well

 

Life is all about perspective.  Live it!

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