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Feel the pain

(This is the first installment of Shelley’s Shrugs.  These are the things that grind my gears about breast cancer.)  

 

As I enter my second year of survivorhood, there is something troubling that I see more and more.  Simply stated, it is the perception that because we are cured, we are healthy and painfree.  Let’s pick that apart:

 

  1. No one can ever know if they are “cured”.  Let’s face it, there were microscopic cancer cells road tripping through my lymph system.  We can know there are no noticeable cancer globs forming at the moment, but that doesn’t mean there aren’t pesky little cells waiting for a friend to party.  I have survived, but I can never be sure if I’m cured.
  2. Yes, I’m basically healthy.  I can do much of what I did prior to cancer diagnosis.  But I don’t do it with the same energy or strength.  And this means that I don’t just get tired.  It means that everyday around 5 pm or so, I hit a brick wall so hard that it leaves a mark.  It means that I sometimes need leverage to get out of a chair.  It means I go to bed at 8 pm, not because I expect to fall asleep (I usually read), but because I am physically too tired to hold myself up anymore.
  3. Cancer free does not equate to painfree.  I have pain every day.  My feet hurt.  My arm and leg bones hurt.  My scars ache.  My back hurts.  My neck hurts.  When I overdo it, I start getting nerve pain shooting through my legs.  This is what they do not tell you before treatment – that you will experience the side effects of chemo and radiation for years, if not forever.

 

Which leads me to the part that grinds my gears.  I actually talked to someone the other day with concern for a family member who was taking painkillers three years after breast cancer treatment ended.  She felt that her relative was addicted to painkillers because, as she said, “She’s cancer-free, she can’t be in pain.”

 

CAN’T BE IN PAIN

 

I’ve heard this a few times from doctors too, who told me that I couldn’t possibly be in pain.  That the discomfort I have can’t be related to treatment at this point.  Let’s see, I didn’t have bone pain before cancer, but I have it now.  Nope, can’t possibly be related.  It’s appalling.  No one should have to quantify how much pain they are in.  If you are not in their shoes, you have no idea what it may be like.  This is true for many other invisible conditions or disabilities, I know I am unfortunately not alone.  It’s time to stop the judging, and see what we can do constructively.

 

In the case of the conversation above, I think the family needs to turn their thinking around.  Is the relative addicted to painkillers?  Possibly.  But it’s time to validate the fact that she IS in pain, and that needs to be addressed.  Her painkiller use is a symptom, and any intervention needs to be part of a pain prevention plan.  I don’t suggest this as a medical professional (I’m not), but as a patient who knows what it is like to be in so much pain that I can’t function.  I personally stay away from painkillers, but I am totally sympathetic to those who can’t resist their draw.  Let’s open our minds, and not judge someone else’s suffering.

 

As for me, I don’t ask for sympathy – merely understanding.  Have patience with me when I can’t keep up.  More than anything, I want to do the normal things in life again.  It might just take a little longer.  Because I promise, cancer isn’t going to stop me.

Guilt by association

I’m sure it will not come as a surprise when I tell you that one of the questions that regularly plagues those newly diagnosed with breast cancer is:  “Why me?”

 

What may be more difficult to believe is the question that hits you once you are done with treatment and have no evidence of disease (NED):

 

“Why NOT me?”

 

Huh?

 

One of the good things that has come out of my breast cancer journey have been the friends that I have made, friends that also fight this insane disease.  They are the best.  These ladies are hilarious, beautiful, caring, and strong.  Early on, we were sharing many of the same experiences.  We were coping with diagnosis, treatment decisions, side effects, grief, and fear.  As for me, I was hopeful and optimistic that I would beat cancer and get back to my life.

 

And, I have mostly.  But there is something new, a little thing called survivor’s guilt.  According to Wikipedia, survivor’s guilt is:

 

A mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not.

 

(I take exception to the implication that I have a mental condition.   But that’s not really my point at the moment).

 

Moving on…

 

It seems like every time I look up now, another person I know has had a cancer recurrence.  Or has developed metastatic cancer (meaning it has spread to other parts of the body).  And I feel guilty.  I feel guilty because I am “healthy” now.  Because I get to continue to live my life.   Because I am making plans for the future again.   Because for now, I have been spared.

 

Why not me?

 

Some of my wonderful sisters have been through similar diagnoses and treatment.   But while I responded well to treatment, they did not.  While I have not had another influx of cancer cells, they have.  What makes us different?

 

Why them, and not me?

 

There are those who would say I’ve been spared for a reason.  That I have a higher calling.  I don’t believe in such things.  The truth, as only I can believe it, is simply that our cells reacted differently.   The cells in any one of our bodies are as different as I am to you.  So, while I may have been one of the lucky ones who have survived this round, next time I may be the one asking, “Why me?”

 

This is why I try to harness my survivor’s guilt.  I try not to take my life for granted.   I try now to get a little more out of each day.   I try to not be so afraid.  Because at the end of the day,  I need to know that I have made the most of my second chance.

 

Why me?  Why not?

 

 

Breathless

For breath is life, and if you breathe well you will live long on earth. ~Sanskrit Proverb

 

Most people don’t give a lot of thought to their breathing.  I mean, it’s a reflex right?  It goes in, it comes out, all without much intervention from our conscious brain.  But it is surprising how important it can be to cope with certain stresses and anxieties, which affect pretty much everyone.

 

Ever since I had chemo, I have experienced anxiety and downright panic attacks.  My chest starts to tighten up, I feel like I can’t breathe, and the hot flashes start forming at the top of my head.  I struggled to control them for a year without much success.  There was no trigger, no action that seemed to spark the attacks.  But they happened at least twice a day, usually sometime in the afternoon, and at bedtime.  I began to wonder if this was my life now.

 

I finally fell back into my old yoga habits, one of which was deep yogic breathing.   And it was incredible.   Over a few months my attacks began to taper off.  I rarely have one at bedtime anymore, and attacks during the day have decreased to maybe one or two a week.  Not only are the episodes occurring less frequently, but I can usually nip them in the bud as soon as they start.

 

The key to using breathing exercises is to perform them regularly as part of a routine, not just when you are getting flustered.  The exercises are simple, but take practice.  They require no equipment, and can be done pretty much anywhere.   And unlike most anti-anxiety medications, there are no side effects.  Well, unless you count being healthy and panic attack free.

 

Now, there, doesn’t that feel better?

 

Here is a very simple breathing exercise to get you started.   It is my go-to when I need to head off an attack at the pass.  (See kundaliniwomen.org for this and other useful information on deep breathing).  For best effect, make sure you are only breathing through your nose.

 

  • One Minute Breath
    Yogi Bhajan specifically recommended that women practice the One Minute Breath in order to create a deep experience of relaxation. Yogis also practice this breathing sequence to calm anxieties, fear and worry, open the intuition and activate the entire brain.
    Inhale: Breath the air very slowly into the lungs for 20 seconds
    Hold: Sustain the breath as you relax the chest and shoulders for 20 seconds
    Exhale: Release the breath very slowly for 20 seconds.
    Continue this sequence for 7-11 minutes daily.

 

Namaste!

 

Face-off

I have been giving a lot of thought to the face of breast cancer.  What is it?  As breast cancer patients and survivors, I sometimes feel like we are one dimensional to the outside world.  Other people have vague ideas about mastectomies, chemo or radiation.   But you treat it and it goes away, right?

 

Or not…

 

There are so many faces to breast cancer:

 

*The 30-something young mother, bravely fighting her original cancer, and finding out in the middle of chemo that it spread to her bones.

 

*The two-year survivor who still experiences paralyzing anxiety and PTSD.

 

*The 30-year old who beat breast cancer, but still faces a hysterectomy and a lifetime of worry.

 

*The 40-year old survivor who fights debilitating leg pain every day, but still laces up her sneakers to try to walk her way back to a healthy life.

 

*The single mom battling stage 4 cancer while trying to make sure her kids are cared for.

 

*The 40-something who dreads every doctor appointment, because it feels like Russian roulette with test results.

 

*The 20-something woman making funeral arrangements after her treatment options were exhausted.

 

These are all faces of breast cancer.  I know because these are my friends and sisters.  One of them is me.   We are all real, and we are everywhere.  We may be your mother, sister, daughter, neighbor, co-worker, or friend.  We may look well but we are in pain, no matter how long we have been finished with treatment.  Don’t mistake our optimism for peace.  We are just putting on a positive face while we attempt to regain our lives.  We turn to each other for support because it sometimes feels like no one else can understand.

 

So be patient with us.  Don’t question our pain.  Dont assume we are fine.  Just help us blaze a path through it.  We do not want to be faceless.  We want to build a community that reaches across cancer.  And no one face can do that alone.

 

 

Hopefully devoted to us all

Like many people, I was saddened to learn that Olivia Newton-John is again battling cancer.  To me, she is not just a wonderful entertainer – she is the first celebrity that I remember openly discussing her battle with breast cancer in 1992.  She advocated for more awareness and better treatments, and showed us that you can have a fulfilling life after breast cancer treatment  – even when you are diagnosed in your mid-40’s.

 

Which is why I think this has hit a lot of my pink sisters especially hard.  I have heard a lot of despair in my support group in the last few days.  After all, Olivia is the one who did it.  She stared breast cancer in the face and said “Oh, hell no!”  It is a reminder to us that any of us can have a recurrence.   Any of us can have a metastasis (when the cancer spreads to other parts of the body).  This is the fear that all cancer survivors, no matter what the type, live with every day.  We all fear the moment that we will once again hear those words, “You have cancer.”

 

But this is not my take away from Olivia’s fight.  When I read about her new challenges Tuesday, the words that jumped off the screen at me were “25 years”.

 

Wow.  Twenty-five years of being NED (no evidence of disease).

 

(On a side rant, I hate the term “remission”.  It implies to me that the cancer is sitting there dormant, waiting to strike again.  NED tells me we eliminated, no, exterminated all the cancer.  Sure, I may produce more at some point, but for now, I have won).

 

But I digress.

 

It is incredible to me that Olivia has been NED for 25 years.  My doctors keep scaring me with talk of five year recurrence rates.  There are days that I can’t imagine more than that.  Twenty-five years feels like a lifetime that I may barely dream about today.  And she did it!  After being treated with 1992 technology,  Olivia has not just survived, she has thrived.   And she shows no sign of stopping now.

 

From her press release:

“In addition to natural wellness therapies, Olivia will complete a short course of photon radiation therapy and is confident she will be back later in the year, better than ever, to celebrate her shows.”

 

I refuse to ever lose hope.  I refuse to think of myself in terms of statistics.  Cancer may win in the end, but it’s going to drag me out kicking, screaming, and leaving nail marks in the door jam.   I have hope for me, for all my pink sisters, and for Olivia.  I hope her treatment is successful.  I hope she tours again and embraces life.  No matter what the future holds, I know one thing.  She has already shown us there is life after cancer.  And I am devoted to finding that for myself.

Bucking the norm

In the hours after getting the results of my biopsy,  I remember having the sense that I was suddenly a mutant.  I was no longer normal.  I was suddenly bombarded with big words I did not understand, and scary sounding treatments that I dreaded.  And I wanted to go back to my ignorant, normal bliss of being healthy.

 

Over the next few months, I started coming to grips with the fact that I was on a year-long journey that had more downs than ups.  And what helped me through, what sometimes drove me to just survive this hour,  was the expectation that after it was all said and done, that I would get back to a normal life.  I would go to work, putter in my yard, enjoy my hobbies, and travel the world again.  On my worst night, when I was bawling my eyes out because I couldn’t face the prospect of getting out of bed the next morning for chemo #12, I gritted my teeth, told myself normal was just around the corner, and took care of business.

 

Which is why it was so frustrating when normal never materialized.   As I finished chemo and navigated radiation, I started getting strength back.  I began to exercise again.  I grew hair.  I went on a trip to celebrate life.  But so many additional items were packed in my suitcase.  The neuropathy in my feet, the anxiety, the chemo brain, the aching in my bones.  I started looking for a new job and had such bad panic attacks that I delayed any searching for a few months.  I developed lymphedema  (swelling in my arm from lymph node removal).  Life was still surreal six months after treatment ended.  And I kept asking once again, where is my normal?

 

As I come up to the one year anniversary of my treatment conclusion, there are still ups and downs.  I have developed nerve pain my arm, and the aches in my bones keep getting worse.  I am plagued by continuing fatigue, and periods of anxiety I don’t ever wish on anyone else.   But I found a temp job that I am loving, and I am slowly getting back to doing all the things I have missed at home.  And I have come to the realization that there is no normal.  Life is constantly changing,  and what is normal one minute, is crazy the next.  I am learning to embrace it.  Because this is who I am, and I want to live for now.  Not for one day when I am “normal.”

Take a ride on the Reading

Cancer takes things from you.  It has taken my inhibitions.   That happens after being felt up and stared at by more doctors, nurses, medical assistants, techs, and med students than I can count.  Hopefully they were all hospital employees.  It has taken my taste buds.  I literally cover all my food in hot sauce and peppers just so I can taste it.  It tried to take my hair, but I got the last laugh when I realized that I actually like my mane super short.  HA!

But I never thought it would take the activity that is nearest and dearest to my heart.

You see, my friends, I cannot read.

Clearly, I don’t mean that in a literal sense.  I still look at the page, and the collection of motley symbols crystallizes into prose like magic, and I am whisked away to far off places.  But I can’t make myself sit down and actually read the entire book.  I now careen through life with dozens of partially read books in my wake.  I used to devour books, now I sit down to read one and think, meh, maybe I’ll just watch a movie.  What???

It is called chemo brain, and the struggle is very real.

According to MD Anderson Cancer Centers, some symptoms of chemo brain include:
  • Difficulty concentrating on a single task
  • Problems with short-term memory; forgetting details of recent events
  • Feeling mentally “slower” than usual
  • Confusing dates and appointments
  • Misplacing objects
  • Fumbling for the right word or phrase

This last one is the reason you can find me standing in the middle of the kitchen frantically pointing at the stove, with no idea what the big hunk of metal is called.

This lack of focus does not extend to my work life.  I hit the office and immerse myself in the fascinating world of numbers with an intensity I haven’t felt in years.  We tussle, we fight, sometimes there is foul language, but at the end of the day, I’ve solved the puzzle, and all is right with the world. My superpower? I create order out of numeric chaos.  I am Nancy Drew, charging around in my roadster looking for clues.  I am Hercule Poirot using my little grey cells to ferret out what is missing from the picture.  I am Kinsey Millhone, drinking cheap wine and piecing disparate bits of information into a patchwork quilt of problem solving.

Just call me the numeric detective.

What I am not anymore, however, is a reader.  I have tried books on tape, but I would frankly rather watch a movie.  Reading gives me a headache.  I also can’t remember what I have read by the next page, so I have to constantly re-read passages.  Words no longer flow like a peaceful river; instead it is like a slow moving bed of lava.  It hurts. Ever been stabbed in the back by your best friend?  Yes, it is that level of emotional pain.

I am coming to terms with my limitations.  I find other ways to occupy my mind and combat the chemo brain.  My planner and a stack of notebooks accompany me everywhere.  My best buddy gave me a sudoku-a-day calendar that is my daily mind warmup.  I don’t blank out quite as often in the middle of sentences anymore.  I still hope to find that literary drive again.  To be a bookworm extraordinaire. An ultimate nerd.

Or to quote Ms.Millhone –

“There were pieces missing yet but they would fall into place and then maybe the whole of it would make sense.” 
― Sue GraftonA is for Alibi

Wait, what?

Patience.

HUH?  Patience is not something I naturally have in abundance. Ask anyone who has known me for more than five minutes.   But in this day and age, who does have patience?  We are a generation of convenience.   Our food is fast, our information is free,  and our streaming is instant.  We binge watch our favorite shows because we can’t stand to wait a week in between episodes.  Instant gratification has become our norm.

And then I got cancer.

When you are diagnosed with cancer, you want answers and treatment instantly.   Every moment is an eternity knowing that the cancer is there inside of you, growing with gleeful abandon (sort of like a malignant Johnny Appleseed).   But then you have to wait.  You wait for available appointments with the doctors who will become your team (probably more doctors than you have ever seen in your life to date).  You sit in waiting rooms, exam rooms, and treatment rooms, waiting for it to be your turn.  You wait hours, days, and weeks for results from blood tests and scans.  You wait for side effects to wane, and for medications to kick in.  Wait – it’s literally and figuratively a four-letter word.

And there is typically nothing you can do about it.  Yes, you can make calls and firmly nag, which sometimes helps, but in the end, our healthcare system is a big, hairy monster who does what it wants.  Which leaves you with two options:  lose your mind, or learn patience.

For me, I usually take my tablet or a book with me to doctor’s appointments and procedures in anticipation of the inevitable waits.  I look forward to catching up on HGTV in the waiting room while waiting for appointments  (What renovation miracle will Chip and Joanna perform this week???).  While waiting for results,  I focus on my life.  I can’t change what might happen in a few days, but I can live today like it counts.  Because it does.

Leo Tolstoy said, “The strongest of all warriors are these two — Time and Patience.”   All due respect to Leo, but he is missing one.  Along with time and patience, there is a third element of strength – the beautiful pink warriors that I am proud to call my sisters.  Surviving cancer is all about taking it one step at a time,  and patiently completing each obstacle in your journey.  And knowing that you will always be waiting – for follow-up tests and visits, as well as the possible recurrence.   You never escape from it.

So if you are newly diagnosed and feel like everything is happening in slow motion (or not at all), know that patience will come your way.  And you will emerge with a new outlook, a renewed sense of yourself, and, quite possibly, the ability and vision to turn a run-down mid-century ranch “Fixer upper” into a modern home.

Navigating the breast cancer highway

​I had cancer.  Some days I have to repeat myself.  I.Had.Cancer.  I first had this thought in the middle of the night a few weeks ago.  You would think at this point that it would not come as such a surprise to me.  I have lived with the idea of cancer for the last 40 years.  At six, I watched my mother succumb to breast cancer.  I have spent the rest of my life waiting for the day that I would be diagnosed as well.  It finally caught up with me on April 30, 2015 (the mammogram heard around the world).  For the past eighteen months, cancer has ruled my life.  I have waded through genetic testing, two surgeries, five months of chemo, six weeks of radiation, and endless months of trying to heal, both physically and mentally.  If this time has taught me anything, it was that I woefully unprepared for this fight.

I had done everything right.  I read a little bit about how cancer works in the body, which overcame some of my fears.  I developed a working relationship with my doctor, and had annual exams.  I started mammograms at 35, going every two years until I was 40, when it accelerated to every year.  Mentally, I was well prepared.  When the doctor called me to tell me my mammogram showed a new mass, and that they strongly recommended a biopsy, I was calm.  I was fine.  

Then the biopsy hit.  Like a hurricane.  I followed the tech in the room, she prepped me, and told me the radiologist would be in shortly.  And I waited.  And waited.  Apparently, the radiologist was tied up with another patient.  Some deeply held panic suddenly bubbled up from the dark recess of my brain.  I was staring at the ceiling, thinking of my mom, and how hard this must have been on her to be diagnosed, with two small children.  I have never had any kids, but the idea that I wouldn’t be able to grow old with my husband suddenly became a possibility in my mind.  I was suddenly terrified.  I was in tears.  I wanted very much to live.

When I received the biopsy results, I was not surprised to find out it was cancer.   But I stewed none the less.  What did the results mean?  How bad was it?  I googled some terms from my report, and quickly decided that was a bad idea, as I didn’t understand what I was reading, but, boy, was it scary-sounding.  I went to see the surgeon, I met with oncologists, and all my doctors did a wonderful job of explaining what my treatment options were.  But I was completely overwhelmed.  I felt paralyzed.  I didn’t know what else to research on my own, or what other questions I should be asking.  As time has passed and I have learned more about cancer and treatments, I realize that I should have made some decisions differently.  I wish I had been given a roadmap, a checklist, or some type of direction to help me navigate.  Because it is confusing.  There are so many doctors, so many options, and so many choices.  As I tried to do research, I found myself lost on websites, drowning in a sea of data.  And I couldn’t help but wonder, was I alone in this?  After more than a year of visiting with other patients in multiple waiting rooms, support groups, and just out and about, it’s clear how many of us face this.  

I have two purposes going forward:  to share my story and to provide information to help others navigate a little easier.  I am not a medical professional, nor do I want to dispense medical advice.  But I want to pull together information that I wish I had been able to find a year ago, linking to sources that may be able to help others in their own research.  Through this blog I hope to share my experiences and feelings as I try to transition between the worlds of patient and survivor.  Because one thing I know for sure – the road to breast cancer survivor does not end when treatment does.  Through trial and error, I am driven to become a breast cancer survivor.