Tell it like it is

This is the next installment in my series of pet peeves about breast cancer…

 

 

We have things that people say that grind our gears.  I have heard it all.

 

I’m a warrior.

 

I’ll beat this.

 

Chemo isn’t that bad.

 

I just have to push through it.

 

There isn’t much lingering pain.

 

And my favorite, “I’m fine.”

 

In the past three years I have watched thousands of women journey from diagnosis through treatment, and into the aftermath.  It is a journey full of ups and downs, pain and elation, and grief and acceptance.  It is like being on a roller-coaster, and just as the train is pulling back into the station to end the ride, the machinery speeds back up and rockets you back for another whirl.  Over and over again.

 

I see a pretty similar pattern.  The bewilderment of diagnosis.  The overwhelming period of treatment decisions.  The determination that comes with the commencement of surgery, chemo, and radiation.  And the hope that comes as treatment is completed.  It has the essence of the plot of a fiction novel.  And it is about as true.

 

Once we overcome the initial shock, the only means to cope is to go into Super Woman mode.  We are warriors who will kick the crap out of cancer.   We can do it all – work, families, home, cancer treatment.  But it’s fine, we will get through it all, we will be cured, and life will be normal.   We minimize our pain and mental anguish to our friends and family because we want to be seen as strong, and we don’t want to ask for help.  Or even admit that we are flailing.  Badly.

 

So we tell everyone that we are ok.  Maybe a little tired.  But we got this.

 

And this is the biggest disservice that we can do for all of our pink sisters, past and present.  Because the average person has no idea what having cancer is like.  So they expect that we can handle it like a champ.  This is why we get comments like, “My mother’s best friend’s sister’s landlord’s former hairdresser didn’t have to leave work, or lose her hair, or get sick from chemo, or have chronic anxiety, or have long-term side effects.”

 

Umm… yes, she did.  I guarantee it.

 

But she is telling everyone that everything is ok and having her mental breakdowns in private.  And so the next woman comes along and thinks that she too must buy into the warrior mentality and not admit the truth about the pain.

 

I remember watching a woman in my support group from the time she was diagnosed.  She was confident and strong.  She brushed off the initial pain and suffering.  Even as she started admitting to the group that she was beginning to struggle, she was still posting only positive updates on her own personal page.  And yet, she has been deeply affected.  She has numerous long term side effects, and hurts for the way her life has changed.   But I doubt that most of her acquaintances understand that because she still falls back on, “I’m fine.”  And so the fiction perpetuates.

 

We need to be honest with everyone.  Yes, my body hurts constantly.   Yes, my brain feels like scrambled eggs most days.  Yes, I have insomnia that is downright painful.   Yes, I have anxiety that is paralyzing almost daily.  I don’t say these things to complain, I do it to promote understanding of why I may not seem cheery somedays.  Or why I may be snappy.  Why I am too tired to go anywhere.  Or at times even talk.  I also try to educate so that if someone else in your life is diagnosed, you will know to look beyond the superficial “I’m ok” or ” I’m fine”.  Don’t ask how she is, ask how you can help her to feel better.  She may not need anything, but for many of us, it is liberating to just know that someone acknowledges our pain, even years later.

 

Let’s not make breast cancer worse than it already is.  Let’s work together so we can all find our own measure of peace.

 

See http://www.driventosurvive.org for ideas, resources, and support while on your breast cancer journey.

 

 

 

 

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In the end

I have the angry music playing today.  The heart-pounding, I would like to scream, but I’m at work so I can’t kind of music.  The kind that dries my angry tears and lets me get back to business.

 

Specifically, I have an earworm from Linkin Park.

 

“In the end, nothing really matters.”

 

I have been fighting an uphill battle lately with anxiety and panic attacks.  Just when I think I have a handle on it, BAM, it smacks me again out of nowhere.  I can’t identify my triggers, none of my coping mechanisms work consistently, and it wears me out.

 

But today, this is different.  This is real.  A dear sister from my support group entered hospice.  Someone I have talked to, laughed with, cried with, and shared our stories.  And now she is at the end.  And I want to cry and scream at the unfairness, the wastefulness of it all.

 

I weep for her and what she is facing.  I’m trying to imagine what is in her head and I know that I probably can only conjure half of it.  Who can really know what they will feel at this moment?

 

I hurt for her family.  I know the pain they suffer because I have been there myself.  The hurt and sadness never really go away.  The path to emotional healing is long.

 

I worry for so many of my other sisters.  Some are early stage, some are stage 4.  But we all know it can be one of us.  If it can take Kelly, with her optimism and fighting spirit, it can come back for any of us.  That is the reality that we try to forget until something like this pops up to remind us.

 

I fear for myself.  That is selfish, I know.  But what happens to me?  I sit here every day, with the cold, dark fingers of anxiety tightening in my chest until I can’t breathe.  How can I ever go back to a sane life?  If it is all going to end way to soon?

 

But then I realize – life is life, no matter how crazy or sane.  It does matter.  Kelly siphoned out all the life she could, even after being diagnosed as terminal.  She never thought of herself that way.  That’s why we will remember her as a force to be reckoned with.  There is no shame in the end of her journey, only an acceptance that our bodies can only endure so much.

 

So I will do the things in life that make me whole.  And I will think of Kelly when I visit my happy place, Disney, which was also her happy place.  I will continue to befriend the courageous women fighting this damned disease.  We will share our stories, and we will be heard.  We will be remembered.

 

In the end, we will MAKE it all matter.

 

For more info on navigating breast cancer, see our website, http://www.driventosurvive.org.

Metal-tate

I have done traditional meditation for years.  I visualize, I do focus exercises, I’m even now dabbling in transcendental meditation (it all makes me sound so deep).  It’s an incredible experience.   I come out calmer, centered, and more focused.  It eases my physical pain.  Meditation is a wonderful treatment for a variety of things that may be ailing you.

 

Back when I started meditating about 10 years ago, my favorite exercise was focusing on the sound of the fan.  The noise, the patterns, the soothing way that it repeated.   Everything else melted away, until it was just me and the fan as I floated off.  Usually to sleep.

 

That was pre-cancer.

 

Now is post-chemo brain.

 

These days, my fan can’t crack the surface of my thoughts.  It’s like a maelstrom in there, a hurricane of ideas, reminders, and unrelated facts that only seem to come to me when I am trying to forget them.  Some days, I can’t sort through the debris.  Sometimes I wonder why I want to.  It’s a whole bunch of nothing.  A pile of crap.  Stuff I’ll forget in five minutes anyway.

 

But then I made a discovery.  Pretty mind-blowing, actually.  Something that has spun my meditation to a whole new level.

 

I almost hate to admit this.  And I apologize to all the yogis out there who think that I am crazy.   But I’m going to just come out and say it.

 

I may be the only person in the world who meditates to Metallica.

 

Yes, THAT Metallica.

 

I know others may listen to music while meditating.   It may even be beautiful,  uplifting, inspiring tunes.  That doesn’t do it for me.  I need noise to calm my thoughts.  Loud, pounding, angry,  head-banging kind of noise.  Sort of like pouring ice-water on your brain kind of noise.  Yes, it may hurt for a moment, but then comes the sweet relief.  I only hear the sounds from the song, not the nagging of my mind.  My head bobs in time to the beat.  Maybe theres even some fist pumping, let’s not judge.  My thoughts feel less disjointed, more associated.

 

And I get calm.  I float off to another plane, if I can be so honest.  They are putting into words what I am thinking.   All the pain, the grief, the madness, the anger.  Its all there, and the music helps me release it.  It’s actually kind of incredible.

 

I still practice the same habits as before.  I’m not completely shutting down my brain.  But I am sitting back and letting the waves turn into eddies so that I can sort out what I need to.  And I can turn off the music and feel the tranquility that has washed over me.  It doesn’t matter what went on that day.  Or what will happen tomorrow.  Or in ten years.  I am centered.  I am whole.

 

And I have found what works for me.

 

 

 

 

Knowing when to shut up

I talk to lots of ladies who are at various stages in their breast cancer journeys.   I make no secret of the fact that my mission in life now is educating anyone who will listen to me on breast cancer diagnosis, treatment, and recovery.  I have learned so much through my journey, how to navigate, how to research, and how many tips, tricks, and hacks are out there.  I want to make this process more manageable for those who come after me.  Sharing is the easiest thing in the world for me.

 

The area where I struggle is when to shut up.

 

Most of the time I think the advice or information is welcome.  Sometimes it is just lending an ear to someone who has questions, and needs to talk it out.  I could do that all day long (and I sometimes do).  But there are times when I really have to hold back.  When I know my advice or tough love will make things worse.

 

Such as:

 

My biopsy was so painful, nothing can be this bad – I hate to break it to you, but that was the easy part.  The good news is that you will get so used to needles, you’ll practically want to start sticking yourself to save time in the doctor’s office.

 

I just had my first chemo, and I feel great! – So, yeah.  I personally didn’t have this experience (I was horrendously sick from my first infusion), but I know others who have.  The effects of chemo are cumulative.  Meaning that each infusion will hit you a little (or a lot) harder than the one before.  Just because you are still going to your spinning class after your first treatment, does not mean you will still be that energetic after the tenth.  And please don’t judge those of us who had a harder time.  You may be one of us in another month.

 

I can’t wait until I’m done with treatment so I can have my life back – This is the cruelest lesson of cancer, which is why I try not to spoil the delusion.  You need that dream to get you through the day sometimes.  But the truth is you don’t really get your life back.  You may go back to work, and get more involved with housekeeping or your kids again.  But it will hurt.  You will be tired, a tired I can’t describe and that I never believe existed in nature.  You will still have constant doctor’s appointments, physical therapy, and tests.  You may be seeing a therapist to make sense of it all, and to combat the anxiety and PTSD.  You will have to make a spreadsheet of all your medications.  Your side effects will have side effects.  You will realize that the life you fought so hard to get back is gone.  But you know what?  You will have a new life, fresh perspectives, and maybe even a new mission.  All you have to do is embrace it.

 

These are things I would like to say, but I don’t.  Because you have to learn these things on your own, and sometimes you just need to believe that your experience will be different.   Sometimes the best way to help is to get out of the way.

 

Or just shut up.

 

Speaking of new missions, keep an eye out for our website, coming out later this week!

All bottled up

Isn’t it funny how we evolve as patients?

Prior to having cancer, I was meek, submissive, and never complained.  I didn’t really question a diagnosis or treatment.  If they were hurting me, I did my best to not show it.

Two years later, I speak up, challenge them, do my own research, and go to another doctor if necessary.  I listen carefully to my doctors’ advice, but I also let them know my feelings, and what I want.  I want to feel like we are making decisions together.

Oh, and just sucking it up and enduring the pain?  Oh, hell no.  I currently have a wound vac to stimulate blood flow to an open patch of tissue on the underside of my breast from my breast reduction surgery a few weeks ago.  The bloodfow issue dates back to one of my prior surgeries when I should have spoken up about how the surgeon planned the surgery.   I had concerns that I bottled up, both before and after.  Now the scar tissue has permanently affected my bloodfow to that breast.

Lesson learned.

So today, I was at the plastic surgeon’s office to have the dressing on my wound vac changed, and the sponge was stuck like gorilla glue.  Both my plastic surgeon and my husband were working on it (training so the hubs can do it at home), and it felt like they ripped off an inch of tissue.  This is when I would normally cry quietly and suck it up.

No.  I’m done.  I screamed bloody murder and cried like a baby.  One of the assistants ran in the room and gave me stressballs so I wouldn’t claw a hole in the chair.  But there was no way that I wasn’t expressing the pain.  There wasn’t anything they could do about it.  They had done their best to loosen it up without pain, but at some point it had to rip.  And that’s ok.  But I can’t internalize it, and I have to let them know when it hurts.  And I did.  (Anyone who has been on a roller coaster with me knows my lung capacity.   Yeah, blood-curdling).

The point is, I think too many of us associate holding in our pain as being strong.  It’s not.  Go watch Xena: Warrior Princess.   She is a badass who screams with the best of them.  We are not strong when we hide our pain.  We do a disservice to ourselves and everyone with our disease.   Those around us need to understand what we go through, or how they ever take our condition seriously?

So when you feel cruddy or are in pain, don’t put on a fake smile and say you are fine.  Be honest about how you feel now, but say “I will get through this too”.

Because you will.

As for me, I will sit here with my pain killers today, and plan the rockstar halter top that I’m going to wear to celebrate my great new rack.  Because every scream of pain is worth getting my body back to its glorious self.

The only bottle I want now is prosecco to celebrate the end of this leg of my journey.  It will taste that much better as reward for the pain.

Cheers.

Such a pain

We all have pet peeves, right?  Habits that make our skin crawl, sounds that are like fingernails on a blackboard  (google it, millenials).  But anymore, some of my worst peeves are stupid dangerous myths and conspiracy theories.   Particularly if they are delivered by medical professionals who swear to protect us.

 

As Pinktober winds down, I feel that I need to do a PSA to dispell the myth that most makes me nuts.  Think of it as my curtain call until next year.

 

Myth:  Only benign tumors are painful.

 

LIE.  BIG LIE.  Dare I say, BIG ASS LIE.

 

It baffles me as to why this idea is still perpetuated.   And why it’s spread by doctors.  Doctors who should know better.  I mean, logically it never makes sense to me if something is always or never.  We know everyone is different, and there is often an exception to the rule.  I’m sure there is some study out there of maybe ten patients and their tumors didn’t hurt.  Maybe it’s some molecular study done on hamsters.  I really don’t give a flying toot, because I am here today to break the bad news to you.

 

Tumors can be painful.

 

Take me, for example.  When my tumor was found on a mammogram, it measured 6mm.  That’s tiny.  Pull out a ruler, turn it to the weird side with the metric measurements you haven’t seen since fourth grade, and look at how small that actually is.  I couldn’t feel it.  Neither could the ob/gyn that I first saw.  Nor could the surgeon, radiologist, medical oncologist, radiation oncologist, another radiologist, a PCP, and the parade of medical staff at the hospital who seemed to randomly feel me up (I sort of took them at their word that they worked there).

 

So how did I come to be diagnosed?

 

I rolled over in bed one night, and noticed a sharp, needle-like pain in my breast.  I realized that I had been noticing it for a few weeks, to varying degrees.  It wasn’t going away, so it wasn’t a bruise.  It was in the same spot every time, but I couldn’t feel a lump.  But it was very wrong, and I knew it meant something.  I went to the doctor a few weeks later, and he scheduled a diagnostic mammogram and ultrasound that spotted my pretty little lump.

 

Seriously.   That pain saved my life.

 

I ended up being treated for stage 3 cancer because even a tiny little lump can invade the lymph nodes quickly.   This is why early detection is so important, and why nothing out of the ordinary should be ignored.  But more importantly,  no doctor should dismiss our concerns because they assume a painful lump is benign.   This is why we have second (or third) opinions.  It’s time to get beyond the myth.  It’s time for doctors to stop telling us that we are imagining the pain.  It’s time we stand up for ourselves and each other, and demand that we are taken seriously.   I have spent 47 years in this body.  I know what it is trying to tell me.

 

See you for #pinktober2018.

 

 

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.

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.