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?

 

 

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.