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.

 

 

 

 

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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.

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.