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.

 

 

 

 

Advertisements

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!

Childs’ Play

This blog has been a long time coming, and probably my most personal one to date.  But it’s something that I want others to understand.  Please bear with me.

 

There are lots of things that people without cancer know about the disease.  Chemo, check.  Mastectomy (full or partial), sure.  Radiation, you betch’em.

 

But there is so much afterwards that makes your life hell that no one thinks about.

 

Specifically, kids.

 

As someone who lost her mom at a young age to breast cancer, I’ve gone around and around on this subject as an adult.  While I’ve never been convinced that I NEED to be a mother, as some do, I always thought I would be.  And while some would say I fiddle-farted away my best child-bearing years, the truth is that I met my husband at 35, and got married at 40.  Every part of me is glad that I didn’t settle for any of the duds that I dated when I was younger.  But it does get more challenging when you form your family later in life.

 

As we found out.

 

Fast forward another five years, and I was 45.  We had just moved halfway across the country, and settled in a new house.  And I had not given up on the idea of having kids.  We had even given some thought to adopting if my almost half century old eggs really would not function.  Then it happened.

 

BAM!!!!!

 

“You have cancer.”

 

And that was that.

 

A year of treatment.  A year and a half of not working.  A year back at work with mind-numbing fatigue and pain.  More surgery which I’m estimating will set back my physical recovery another six months.  This is all a constant reminder to me.

 

I am 48, and I can barely take care of my cat.  My husband spends most of his time taking care of me.  We are running out of people to take care of the kids.

 

Oh, the other part that is a deal breaker?  The early menopause.  Happens to a lot of us pink sisters.  You are welcome for the TMI.  But it makes me angry, because at least one decision has been taken out of my hands.  And I don’t like that.  Cancer took away one of the most personal things I could have done in life, in an instant.

 

Then there is the whole adoption idea.

 

I would still like to do it.  As someone who was raised by a non-biological mother, I can tell you that actions define a mother, not a bloodline.  But my actions are not what most at-risk kids need.  Anxiety, panic attacks, insomnia, PTSD, fatigue, pain, and mood swings.  Not to mention the financial toll that cancer treatment leaves in its wake, although I’m confident I could figure that part out if I could get the rest of it in line.

 

Why am I telling you this right now?  Because like any self-respecting psycho, I keep these feelings tamped down in the back of my brain.  It allows me to focus on my day-to-day life with some shred of sanity.  But then something cracks it open.  In this case, it was a picture of someone with her baby doing some fun activities I had always imagined doing with my kids.  It hits me out of nowhere.

 

And then the denial is broken.

 

No one asks for this.  No one asks to lose control of her body, her life, her reason for being.  And all I can do at this point is keep focusing on my mental, physical, and financial recovery.  But when you see someone with cancer, ask yourself:

 

“What hidden side effects does she have?”

 

Because I guarantee cancer has taken something precious from her.  It has derailed her life, no question.  And maybe there is some way that you can help, even if all you do is really talk to her and listen.  We just want others to understand how broken we are.  And how badly we want to be put back together.

 

At the very least, my cat will thank you.

 

 

 

World of difference

Anyone who knows me will tell you that I have a hard time making friends.  Painfully shy as a child, I have learned to put myself out there as an adult, but it still feels brutishly difficult.  Bookish, a loner, sarcastic to a point that people wonder if I’m serious (sometimes I am), I don’t have a “people person” personality (or as I like to think of it, a PPP).

 

So I have always run in small circles.  Like I can count my real friends on one hand.  I would rather spend a day off spread out on a lounge by the pool, or in a big chair with a book and a warm, purring cat.  Alone.  Talk to someone?  Oh, hell no.

 

So it has surprised me during my cancer journey to see the community that I have been building around myself.  I have family who have gotten much closer to me, and I love every minute that I talk to them.  Some of my close friends drifted away, but other friends have become my biggest defenders and cheerleaders.   And I make new friends, as it turns out that there is an actual audience who appreciates my personal brand of snark and witticism.

 

And then there is my family of pink sisters.   I swear that breast cancer bonds you in a way nothing else can.  I have ladies in my support group around the globe that I talk to as much as my family.  And it’s not just about cancer (although that is a frequent topic).  We talk about our lives, our families, our friends, our jobs, our hopes, our plans, and how we want to give back and love on the great big world.  We understand each other in a way that I couldn’t have conceived two years ago.  A few have become more than just pink sisters, they are real sisters.   Needless to say, locations for my future travel plans are multiplied exponentially, because there isn’t anyone that I don’t want to hug in person at some point.

 

It really does take a village, or as we like to think of it, a tribe.  Fear is lessened when it is shared, but joy has the opposite reaction.  It explodes in the sky like firecrackers.  I would never say that I’m glad I had cancer so I could learn this lesson.  On the contrary, I would prefer that it never happened.  But since I can’t turn back time, I am happy to find a silver lining.

 

A sense of community.

 

Dare I say it, a PPP.

 

 

 

 

 

 

 

Healthy choice

Life is about choices.  We face them everyday.  Some of my hardest choices have been about cancer treatment.  Is it aggressive enough?  Is it worth the side effects?

 

When I was faced with my surgery options, I was frozen.  I was numb.  I was terrified.  You name it.  I had never imagined what I would think when faced with the prospect of a mastectomy,  but I didn’t expect that.  I had some first-hand observations.  My mom had a mastectomy back when I was 4 or 5.  I used to play with her prosthesis,  and the need for it was not a mystery to me, even at that age.  And that’s perhaps why the idea so petrified me at the last minute.

 

I followed my doctors’ advice.  In the end, they told me I was a candidate for a lumpectomy,  and left the decision up to me.  I went with the lumpectomy.  It made sense, or so I told myself.  After all, it was an easier surgery with less recovery time.  I likely wouldn’t need additional surgery.  And most importantly – I didn’t have to make the hardest decision of my life.

 

Was it the best decision?  I don’t know, although I try not to second guess myself.   It still was a legitimate decision based upon the information at the time.  What I couldn’t have guessed at was the reality.  I couldn’t have foretold that I would have to undergo a second surgery a week later to remove more lymph nodes.   I would not have predicted that I would end up with an incision that would split open, and not close up for nine months.  It never would have occurred to me that I would end up with a fist-sized lump of scar tissue underneath a 2″ X 4″ scar that hurts constantly and is a great predictor of rain.  Or a breast that shrank a size smaller than the healthy side after radiation.

 

I won’t say it’s bad, but my radiation oncologist refers to me as “the scar”.  My plastic surgeon put it even more baldly, “What the hell did they do to you?”  I’m really not concerned about the appearance, but I’m tired of it aching and hurting.  And the nerve pain that it causes periodically in my arm.  And the fact that it feels like one big lump, such that all my doctors tell me that they can’t feel if anything else is there.   When I first went for a consult with the plastic surgeon,  I wasn’t sure what I wanted to do, if anything.   As I have followed up with him, my reaction has surprised me.  I told him to reduce the mangled side as much as he can, as well as evening out the good side.  I told him that even a mastectomy was on the table, if that was what it took.

 

The ease of that last statement shocked me.  I’ve changed so much in the last two years.  Losing my breasts is not the worst thing that can happen to me.  I’ve met so many women who have faced this decision so much more bravely than me, and I realize now it’s not the end of the world.   I understand how important the rest of me is.  And I know what a warrior my mom was, and I want to think I have a bit of that badassery in me.

 

So tomorrow is my surgery.  Currently, it is a bilateral breast reduction that will hopefully make me more comfortable and pain free, as well as giving me peace of mind by removing some extra tissue.  But I’m prepared for any outcome now or in the future.

 

My choice.  Because I’m not ruled by fear.