Are you my mother?

Today as I write this, my mother would have turned 72. This is tragic given that we lost her to metastatic breast cancer when she was 30. I’ve often wondered over the intervening forty-two years what she would have been like. Would she be proud of us? Would we be close, and talk, and laugh?

 

Would I find that I am like her?

 

The honest truth is that I have no idea on that last one. The six-year-old me only knew Mom. The person who put band aids on skinned knees, broke up the bickering with my brother, and told me I really had to go to sleep because she just saw Santa Claus landing on the house next door. I didn’t get to know Mom the person, but I know she had to be amazing.  How could she not be?  She created my universe.

 

All the years I was growing up, I tried and failed to feel her presence. Anyone who knows me, understands that I don’t believe in ghosts and spirits in the traditional sense. But I do think that when someone has had an important place in your life, they become a part of you mentally. I know this was true with my grandfather. He was there every day for me, and after he passed away when I was 25, I still felt his presence. I think of him when I hear an off-color joke that I know he would have appreciated. I think of him when I eat baked beans, one of his favorites. I love to reminisce with my brother about all the crazy adventures we had camping with grandpa. He was colorful, and lively, and I love how much I am like him sometimes.

 

I don’t have those memories of Mom. The memories that I do have became hazy with time, as has her presence. Its not that I don’t remember her, it is just that it is like a dream.  You know you had it the next day, but there isn’t always clarity.  Much like watching an old 13-inch black and white tv with an old rabbit ear antenna, the picture is sometimes a bit scrambled.

 

It’s a part of my life that I have hated.  I look at pictures and don’t know what they mean.  I ordered a copy of my birth certificate about ten years ago, and was fascinated with her signature.   Up until that point, I don’t recall ever seeing her handwriting.   I’ve clung to scraps of stories to get insight into her nature.  But it’s like watching a movie of someone else’s life.

 

When I was first diagnosed with breast cancer, I thought about mom a lot.  As I began to work through my emotions, I began to wonder what her journey was like.  I tried to imagine going through cancer with two young kids, and my heart broke.  As I have come out the other side as a survivor, I count myself lucky because I know how it can turn out.  And how it may turn out in the end.

 

As I was struggling last week with what I wanted to say in mom’s memory, I received a message from one of my most dear friends and fellow breast cancer warriors.  She said during a recent meditation she had felt mom’s presence, and that she was proud of me and the work that has become my passion, educating the world about breast cancer.  And I suddenly realized something.

 

For the first time in many years, I feel mom’s presence beside me.  I have a glimpse into what she experienced, and for the first time in a long time,  I embrace that we have shared the same path.  I share something with her that no one else did.  And even though it is a horrible, ugly disease, I think that we share a common goal – to fight for all those who are afflicted.   Because I want everyone who has metastatic breast cancer to understand one thing.  Your children will not forget you.  They will love you always.  They will always look for more insights into who you are.  And hopefully one day, we will find a cure for metastatic breast cancer so no more daughters and sons have to spend their lives looking for a connection.

 

A cure.

 

For me.  For you.  For us all.

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Pinktober blues

It’s that time of year again.   The air turns cool, the leaves turn beautiful autumn colors as they drift to the ground, the air is scented with the heady aroma of pumpkin spice, and ghosts and goblins prepare for their night of debauchery.   And inexplicably,  everything is pink.

 

Yes, my friends, it is Pinktober.

 

We hold walks, bake pink cupcakes, and say we are supporting the fighters.  For one month out of the year.  But for those of us who have battled the disease, the awareness continues for the eleven months between Pinktobers.  We need to do more.

 

Now, I have no complaints about the color pink.  It’s actually my second favorite color.  I don’t even have a problem with its association with breast cancer awareness.  I love all my pink sisters.  What I find irksome is that we need a month for awareness.  After decades of the pink blitz, most people are aware that breast cancer is a horrible disease.  I think we need to focus less on awareness, and more on practical support that reaches out to women directly.

 

Here is what I suggest if you want to support our fight:

 

1.  Donate to a reputable research organization.   Find a group that will make the most use of your dollars.   There are wonderful research groups that are trying to make lifesaving discoveries.  But please be aware that some organizations use donations in varying ways.   Look for one that is funding research, not excessive administrative expenses.

 

And when it comes to research, we are failing our stage 4 warriors.  Stage 4 breast cancer is never cured, it is only treated.  But only a fraction of the research is focused on this group.  Breast cancer does not kill – we die when it spreads to other parts of our body.

 

**Not sure where to donate?  Do some research on Charity Navigator or Consumer Reports .  And please check out Metavivor for more information on stage 4 research. 

 

2.  Give directly to someone in treatment.  Make a care package, offer to drive her to treatments, take the kids for an afternoon, or chat about non-cancer life over a cup of tea.  Give gas cards to your local cancer center.  Crafty?  Make shawls, blankets, and hats to donate.  There are ladies in your neighborhood who need help.  Contact your local hospital, cancer center, or support groups to find out how to find them.

 

**Many patients feel like they are abandoned by family, friends, and their local community.   The best thing you can do is make them feel loved!

 

3.  Celebrate a survivor in your life.  Take them to lunch and a pedicure, send them a card, call them and ask how they are doing.  They need TLC long past their treatment.

 

**Did you know many survivors suffer from anxiety, depression, and fear?  Side effects last long past treatment. 

 

4.  If you are a survivor, share your stories, both the good and the bad.  Let others know what you wish you had understood prior to your diagnosis and treatment.  We know more than anyone how paralyzing it is to hear the words, “You have cancer”.  Let’s pay it forward, and help the next ladies who come after us.

 

Let’s re-invent Pinktober! 

 

We need to change the focus of the conversation.   Let’s work together to provide support to those in treatment, and to survivors.  Let’s fund meaningful research.  At this point, we know what we need.  Practical support.  For all women.  Let’s make pink positive again.

 

 

The bend and snap

A few days ago, I dropped something on the floor.  I squatted down, picked up the item, and straightened back up.  I almost dropped it again when what I realized what I had just done.

 

I BENT DOWN.

 

Wait, what?

 

Prior to having cancer, I took a lot for granted with my health and fitness.  Walking around the house without getting winded.  Doing simple tasks without my chest getting tight.   And, yes, bending down.  You don’t have to be an athlete to live your life with ease.

 

But all of that goes out the window during cancer treatment.  I spent the vast majority of my five months of chemo in bed.  You might be surprised at how quickly you suffer muscle atrophy and loss of flexibility.  (According to Livestrong, recreational athletes suffer atrophy after twelve weeks of inactivity.  I’m sure this is without being bedridden).  That would be on top of the effects of the chemo drugs on your body, particularly your heart and lungs.   I am in awe of anyone who is able to work and exercise during this period.  I did well to walk from the bed to the kitchen for a glass of water.  And the most frustrating thing to me was not being able to bend over.

 

I remember dropping my pen under my desk right after going back to work.  I got on the floor to pick it up — and couldn’t get back up.  My brain was sending a message to my muscles to engage… and my brain was flipping the bird right back.  I finally struggled back into my chair, but I am grateful no one was around to witness my lack of grace.

 

Which is why I am so thrilled to acknowledge how my flexibility has improved in the last few months.  I can stretch, scrunch up into a ball, and almost make myself into a pretzel.  I can easily paint my toenails.  I’m nowhere near my pre-cancer, yoga self.  But I can touch the floor without toppling over.   I can’t do this for long periods yet.  There is still too much chemo damage, and the tight chest and shortness of breath remind me of my journey.   But the improvement over the twenty months since finishing chemo is enough for now.

 

I can bend and snap with the best of them.

 

And I will never take this for granted again.

 

For more information, see:

www.livestrong.com

Do I look like I care?

Back before my cancer days, I was a little energizer bunny.  I love what I do for a living, and I do it well and often.  I worked late, I worked weekends, I worked at home.  If I didn’t get carsick, I probably would have worked there too.  I took everything to heart. Every catastrophe, every fire that had to be put out, every stress that came to bear, all came to roost on my very capable and strong shoulders.  I woke up in the middle of the night chewing on problems of the day before.  I jumped into every mess feet first, and wrangled that monster until it was untangled and beautifully clean.

 

When I first began to think about going back to work after I finished treatment, I was both excited and concerned.  I had been off for a year while I had surgeries and treatments.  I was ready to re-join the world of the living.  But I was nervous about how difficult it might be to maintain enough strength to be the employee that I had always been.  That was important to me.

 

When I went for my first interview, I began having panic attacks.  I decided that perhaps I wasn’t ready for my re-introduction to society.  For the next six months, I waffled between the desire to work, and the urge to crawl back into my blanket fort where I was safe.  But at long last, the day arrived.  I fell into the perfect situation, just what I had been looking for.

 

I soon discovered that stress was running rampant through my co-workers.  There were many to choose from, deadlines, system changes, staffing turnover.  Or as anyone in the corporate world will understand, just another day at the office.  I worried that I would get sucked back into the mayhem.  Two things that are quite bad for you after cancer are stress and fatigue.  They weaken the immune system, which can encourage the growth of more cancer.  I know I need to control the stress in my life.

 

It turns out that I needn’t have worried.  I have a new-found operating philosophy, a mantra so to speak.

 

I just don’t care.

 

This isn’t to say that I don’t enjoy what I do, or that I do a sketchy job.  On the contrary, my standards for my work are as high as ever.  But it’s a waste of my time to be drawn into emotional garbage over work.  Crisis at the office?  I’m there for you.  Let’s analyze the problem, brainstorm the solutions, and make it happen.  Get me some coffee and set me loose.  But I’m not going to waste any of that time gnashing my teeth,  being angry at anyone, or worrying about meeting deadlines.  I’m just going to work as hard and efficiently as I can to complete the job.   But the other half of the equation is that I am learning to be more realistic about what I can actually accomplish.  I may produce miracles, but I am much more methodical about getting there.

 

I won’t lie to you and say that I am in a constant state of zen everyday.  But I am much more at peace, and I feel more calm and comfortable confronting challenges.   Cancer didn’t break me, and neither will my career.  This may be the most important life lesson I’ve learned to date.

 

Even energizer bunnies need to re-charge now and them.

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.”