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!

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.

 

 

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 Grafton, A is for Alibi