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.

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Forget about it

One of my favorite side effects is chemo brain.  It’s great.  You can’t remember anything, so there are no worries!  You won’t remember this in five minutes anyway.   And words.  What are those?  I routinely blank out in the middle of sentences and can’t remember a word I need.  It’s what I imagine it is like to have amnesia.

 

In all seriousness, chemo brain can be annoying at best, and debilitating at worst.  But I am learning to cope, and I want to share a few hacks with you.  And this is not just for those with chemo brain!  I know a lot of my non-cancer friends are entering the life phase of being “forgetful”.  These will work for you too!

 

So what am I talking about?

 

1.  Write it down.  I’m serious.  Pencil and paper baby, keep it old school.  Get a notebook and keep it by your side.  Write everything down.  EVERYTHING.  You may need it to jog your memory later, or you may never look at it again.  But I have found that the act of physically writing something down sometimes imbeds it in my brain so I remember it.  Also, I have rediscovered penmanship.  It feels so soothing to take my time writing.  And I feel  accomplished when I look back at the beautiful cursive.  Props to my third-grade teacher (whose name I have forgotten) for drilling this skill into my mind.

 

Typing on your computer or phone doesn’t seem to have the same effect, so don’t bother.  Pen and paper.  You can get them at any store.   Go.

 

2.  Speaking of writing, get a planner.  A good old-fashioned book that you actually write in.  You can put things in an electronic calendar if you like, but it helps to remember it if you physically write it down.  The are some great ones out there, I personally use the Law of Attraction planner.   It’s so much more than just a calendar.  It’s a life planner.  I’ve brainstormed, set goals, and evaluated my progress.  It inspires thinking and planning.  And it allows me to write.  It is by my side constantly, reminding me of tasks and appointments.  You need this.  Go now.

 

Freedom Mastery Law of Attraction or search on Amazon. (I have no vested interest, I just love their products.  So there.)

 

3.  Puzzles are good.  They make you think, and use logic.  They make you write, and we all know how I feel about that.  I personally love sudoku.   It’s not just thinking, it’s using numbers.  It’s a workout for your brain.  The more the brain is stimulated, the more it heals and stays young, or so I like to think.

 

(Disclaimer:  I am not a scientist.  I just like giving an opinion). 

 

So pull out that pencil and do a word or number puzzle.  Not an app on your phone that does all the work for you, but actual paper and pencil.  You know the drill.  Go.

 

4.  Learn another language.  It gives you a mental workout and challenges you to remember new things.  Think of where you would go on your dream vacation, and start learning the lingo.  Start with an app to help you with vocabulary (there, you can finally use your phone, does that feel better?).  A nice one I like is Duolingo.  Once you get more comfortable, watch shows in your new language with English subtitles (Netflix is your friend).  Read books and learn about the culture.  Get that brain working.  It’s good for you.  Why are you still reading this blog, you have studying to do!  Go.

 

5.  There was a fifth one, but I have already forgotten it.  Whatever.

 

So there you have it.  My recipe for fighting chemo brain and forgetfulness.  I’m not sure if mine is better, or if I just manage it well.  Either way, life is just a little bit easier.  And in the end, isn’t that the idea?

 

For more hacks and good info, check us out at Driven to survive.

 

 

 

Does size matter?

This post is all about boobs.

 

(I’m trying to attract more male readers).

 

Go out to a public place with a lot of traffic, and take a look around.  You will find women of all shapes and sizes.

 

(Be cool about this, I don’t need any of you going to jail for lewd behavior).

 

The size of a woman’s breasts is something very personal to her.  They may be too big or too small, but they are hers.   One of the great insults of breast cancer is suddenly having them altered whether you want it or not.  Woman endure single or double mastectomies.  They decide to remain flat, or undergo reconstruction to attempt to regain the look that makes them comfortable.   Even women who have a lumpectomy, like me, end up with breasts that are different sizes and shapes due the amount of tissue removed and the effects of radiation.

 

Which is why I underwent a bilateral reduction a few months ago to even out the size and thin out the scar tissue from radiation.  Despite on-going complications and the need for a skin graft, I am thrilled with my results.  I feel like me again.   I don’t see a reminder of my cancer journey every time I look down.  Cancer may come back, but that will be a new chapter.   This chapter is done.

 

During my time making these decisions,  I have talked with countless women to hear their stories and get other opinions.  Not just cancer survivors, but also women undergoing voluntary breast reductions or prophylactic mastectomies (what my surgeon referred to as the “full Angelina Jolie”).  And it has raised some interesting conclusions about size.  It’s heartening to see the options that women have, not just to counteract cancer,  but to take charge over other body issues.  Breast size can cause back problems, headaches, and increased cancer risk.  It is not just about body image.  In many cases, women liked their old breasts, but felt they needed the surgery to solve physical problems.

 

What I find troubling is the amount of obsession so many woman have over the “number”.  I see many ladies unhappy with their surgery results because they went to be measured, and their new bra size is too big or too small.  Or they were measured in several stores, and got a variety of sizes, none of which they wanted.  The issue is that they had no complaints until they were measured.  So is the actual size that important to our psyche?

 

The problem is how fickle size is.  Clothing manufacturers are notoriously bad about consistently sizing their clothes.  This is why we try things on before buying them.  It is not a personal failing, or a result of a poor surgeon, if we have to buy a bra that is a size bigger or smaller than our vision.  We, as women, need to look in the mirror and ask if we like what we see.  Certainly, if the answer is “no”, we should pursue revisions or other options.  But let’s make that about reality, not an arbitrary size.

 

In actuality, size does matter.  What does not matter is the little white label in your bra.  It’s time to cut it out and be free.

 

For more information on navigating your breast cancer journey, visit our website,  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!

Whitewash (A tale of dirty laundry)

My husband does the laundry in our house.  It works for us.  Back before I met the hubs, my idea of doing the laundry was to let the dirty clothes pile up until I had absolutely nothing to wear.  Then I would stuff the clothes into the washer, and sometimes they would make it into the dryer the same day, sometimes it was the next day.  Then I would go to the dryer each day to pull out an outfit.

 

The hubs likes his clothes folded and on hangers in the closet.  Go figure.

 

So he has become accomplished in the wonders of washing.

 

Why is this significant?  Let me explain.

 

I have become an expert in wound care in the last two and a half years.  I spent nine months caring for an open wound after my lymph node dissection, and I’ve been treating a fat necrosis for the last month and a half after my breast reduction.  What does this all mean?

 

Blood.  Lots of blood.

 

I clean, I bandage, I add padding.  Somehow, I always bleed on my bras.  I don’t even think about it anymore.   When I see it, I just change clothes.  Looking at my own guts?  Nothing to it.

 

This all led up to this conversation last week:

 

Hubs: Why is this bra on the side of the hamper?

 

Me: There is a large bloodstain on it, I just wanted to make sure you saw it.

 

Hubs: No biggie, I ALWAYS check all your white clothes for bloodstains.

 

Me: <Facepalm>

 

This, my friends, is real marriage.

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.

 

 

 

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.

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.