Feeling like a burden… and how the big C affects relationships

My one biggest fear about living and eventually likely dying from this disease is becoming a burden to others.  This is a solid  fear…. I am a single woman with a lot of friend support, a boyfriend with a very busy business, and family who quite frankly hasn’t seen much of me during these last few years of hell.  

When I was diagnosed and treated for 2A disease in 2012 I put the paper bag on my head and did it, all while working.  Friends poured out their love bringing food at least once a week, donating a cleaning service for the house, helping with the dogs, at that time Althea was just a pup. So many other thoughtful things that made me feel so fortunate. 

The difference between then and now is startling….. I had a “curable” stage 2A course of treatment that had an end point, with the exception of a tamoxifen pill.  But there was an end.

With stage 4 disease there is no end. And the goal is to hang on to a drug as long as you can, either until the side effects are so intolerable, or the drug no longer works. You wind up hopping from drug to drug until there’s no tools left in the toolbox.

I have been dealing with severe GI issues since having major lung surgery and another procedure shortly thereafter. A whole lot goes through my squirrel brained 20 year nurse head as to why.  Why now is my belly revolting?

Unfortunately a lot of my thoughts and interactions result in feeling as though I’m a burden. I somewhat mourn my “old life” because of the safety and stability, and fearless independence. I had a full time job, I recovered my body from the assault it took to be the strongest in my life, I raced bikes, all while dealing with divorce.  

Cancer has changed relationships which are so incredibly valuable to most people’s well being.  Friends have faded away, my family lives out of state and are in their “bubble”…. all because “But Kristy, you look so good!”.  (That subject will be perhaps my next blog installment).

On the bright side, moving up to the mountains to a small quiet town was the best thing I could’ve ever done. Cancer has taught me to trust my gut and tap in to my intuition.  I love this community… great people who really care. I get the best of both worlds really….that work colleagues and friends have weekend homes here and I get to spend some quality time with people I’ve known my entire 17 year career where I still work very per diem.

However, that fearless girl is no longer… what’s been seemingly decimated is that self confidence and sense of security.

When all is said and done at the end of life is that you are ultimately with yourself…. everyone dies alone… you can’t pick someone or something to go with you.  You are in fact alone.

I don’t easily ask for help… but I would urge other MBC thrivers to ask and not feel an ounce of guilt. Just remember the person you are and what goes around comes around. Be a good human, and others will do the same.  Take help when people are offering, because in my experience that initial “crisis” type help tends to fade away. People have their own lives to live, which they should.  100%.

Thanks to anyone that’s  reading.  This whole blog thing is foreign to me, but as I said in the last post it feels good to write. 

Meanwhile, this week I’ll be delving into a vegan low fodmaps cookbook and planner trying to figure out what I can eat and try to wake that old fiestyness to help my body heal. 32 months of chemo and counting.  

Much love to you all.

Kristy

And you may ask yourself, well… How did I get here?

My name is Kristy…. I am a 42 year old woman living with Metastatic Breast Cancer (MBC).  I decided to write about my journey in hopes of educating, and helping people understand what it’s like to live with MBC, and to empower women who are living with MBC that they can still be athletes.  That ‘living’ a decent quality of life with MBC is possible.  And I also have hope that it will help heal some of the traumatic holes in this journey that the universe has somehow chosen for me.

My journey started in January 2012 when I was diagnosed with stage 2A breast cancer at the age of 36.  I found the lump while lying on my right side in bed.  I am a nurse, so as a nurse would do, I rationalized that I pulled a muscle from working my pecs out too hard that week.  Well it didn’t go away, then I had my annual, and I almost forgot to mention it to my doctor.  “Well it’s probably nothing, but we should do an ultrasound”.  The ultrasound led to a mammogram, which led to a biopsy, which led to a Radiologist, someone who would become one of my best friends, telling me in the doctor’s parking lot at work, with my boss and friend by my side, that I had the dreaded big C.  I could see it in his face while walking back from lunch with my boss, Joan.  We both saw it…. the oh shit moment.  My husband at the time was in California for work, that was the most awful phone call I’ve ever had to make….. next awful was my parents.

There was no good reason….. no explanation.  No family history (only 10% of BC patients do).  Vegetarian since age 14.  Exercise regularly.  Moderate drinker…. well there was my 20’s…. ha.  A good friend who is a Neuro Oncologist told me, ‘don’t try to figure out why Kristy, because you’ll never find the answer’…. and I never tried again.

Fast forward……. bilateral mastectomy, 6 rounds of IV chemo (TC), acquiring lymphedema, then a long discussion with a radiation oncologist about radiation to prevent chest wall recurrence… an exhausting conversation about numbers.  I declined radiation, hindsight that choice just helped to prolong my life this last year.

During that time I realized how fortunate I was to have such amazingly supportive friends and co-workers.  Two friends felt helpless and didn’t know what to do for me, so they created a ‘bike fund’ website, and 49 people donated into it to get me a new mountain bike.  My husband presented me a card with inspiring messages from all these friends, and it made me realize that despite cancer, I was so fortunate to have such amazing people surrounding us.  I picked out an Intense Carbine 275, and my husband picked out all the components, and it became the most special bike on the planet.

It took me a year to feel somewhat normal, and to have about an inch of hair grow back.  As time went on I felt like I was coming out of a coma.  The world looked different.  I felt different.  I knew what needed to happen….. joy and happiness.  I wasn’t necessarily unhappy, but I wasn’t blissfully happy.  I wanted to shoot for blissfully happy…. and give it a whirl in a quiet mountain town.  We split up, as I have learned a lot of women around this age group do after this traumatizing event.

10 months after my last dose of chemo I completed my first XC mountain bike race in April 2013…. all these feelings of inadequacy, that I couldn’t get back to where I was before the big C.  I had done it, it wasn’t pretty, but I did it….. then I did it 7 more times that year.  All while working, going through divorce, and taking the anti-hormone drug Tamoxifen.

Fast forward to the summer of 2014…. something wasn’t quite right.  I knew it in my gut.  But again rationalized that I was having allergy issues adjusting to life at 9000ft.

September 27, 2014….. the serendipitous mountain bike crash on my bike with special powers.   I had gone out for a ride with my radiologist friend Roger, his girlfriend, and a few other friends.  I climbed nearly 2,000ft then dropped into a trail well known to me and down I went…. I had dislocated, and broken my shoulder in three places.  That evening, the clinic doc whom I knew from being in such a small community, called and said “you have a massive pleural effusion Kristy”….. and the other foot dropped to a thud.  That’s when I knew I was one of the 30% of early stage breast cancer cases that had come back and metastasized.  I knew I had stage IV breast cancer.  I learned the statistics and they weren’t good…. so I chose not to consult the University of Google or WebMD…. I am not a number.  June 27, 2017, I outlived that 33 month statistic.  Many women don’t.

I had an emergent CT scan of the chest the following day, and had over 1.5 liters of fluid surrounding my lung and a spot on my liver.  My own personal camelbak on my lung….. great.  Then came the PET scan, brain MRI, MRI of my pelvis, all to confirm I had metastatic disease in my liver, the pleura of my lung, throughout the bones in my spine and pelvis.  Two liver biopsies confirmed I had ER/PR+ HER2- disease just like before.  I started an oral chemo agent called Xeloda, and IV bone drug called Zometa, and a painful monthly injection in my butt to shut down my ovaries/hormones called Lupron.

Scan. Treat. Repeat.  That is the motto of women everywhere living with this disease.

The first 6 months was a complete blur.  I had a boyfriend, and I thought, oh geez, this isn’t going to work.  But it did…. and we’re still going strong.  He had been a long time water and snow sport volunteer with disabled folks, and when I met him, I said ‘well, I’ve had breast cancer and I have this arm that is chronically swollen (lymphedema) from the surgery’ and he said ‘well at least your arm is still attached’….. I feel so fortunate to have found Scotti, a most precious and genuine soul.  It hasn’t been easy, but we’re doing it Harry….  All with the unconditional love and support of an amazing community of friends, family, and colleagues….. and my fur kids, Althea and Samson.  These precious souls get me out everyday even when I want to pull the covers over my head.

This is my first time writing, and it feels good…. so maybe I’ll write some more here soon.  In the meantime, screw pink ribbons….. no one dies from early stage breast cancer, we need research dollars and support for a cure for stage IV metastatic breast cancer… period.  Groups like Metavivor are doing this, as well as The Metastatic Breast Cancer Project.  Check them out at http://www.metavivor.org and http://www.mbcproject.org

Peace, love, skiing, and bike rides… Kristy