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.

Practicing medicine

I am here today to talk about being a proactive patient.


I don’t care if you have stage 4 cancer, are perfectly (disgustingly) healthy, or act as a caregiver to someone who is ill.


This one is for you.


(Ok, I do care, and wish we were all disgustingly healthy.  But you know what I mean).


This is the deal.  The days where we went to one doctor and took what he (and I do mean “HE”) said at face value are over.  Done.  Kaput.   This is your health we are talking about, the very essence of your life.  We need to build relationships with good doctors, and demand the best care available.  I don’t care how little money you have, or what insurance you are stuck with, we pay for a service, and we deserve the best results possible.


It’s your life.  YOU are responsible for overseeing it.  That can’t be delegated.


So how do you become proactive?  It starts with your choice of doctor.  If you are insanely healthy, you may only have one doctor (how quaint).  If you are fighting a disease such as breast cancer, you have an army of medical professionals.  I personally command a medical oncologist, radiation oncologist, cardiologist, plastic surgeon, surgeon, and primary care physician.  I also have a physical therapist and lymphedema therapist on call.  I feel like a general ordering maneuvers most of the time, but its the only way I can feel like I have covered all the bases.


What to look for in a doctor, whether it is one or ten?  Here are a few of my thoughts:


1.  How accessible is the doctor for questions?  Two of my doctors have cell phones where they can be reached 24/7.  Two more have an on-line messaging service; I always receive prompt responses.  Two others are mainly available by phone, but I find that they respond quickly so that is ok.


You should NEVER have to wait weeks until you have an appointment to have questions answered.  You should not put up with unanswered messages.   Part of healing is keeping calm, and that is difficult if you are under constant stress from your medical providers.


2.  Demand better.  Don’t look at it as a second opinion.  Treat it as an interview.


Go to meet additional doctors, listen to their views on your health, and ask questions to see if this is someone you can work with.  Are they willing to work as a team with your other doctors?  Ask questions about alternative treatments and recent research to see what their reactions are.  Make sure they are a good fit.


3.  Make sure your doctors are willing to listen to YOU.


You have concerns.  Are they being taken seriously?  I see too many people being diagnosed with advanced cases of their disease because it took too long to diagnose.  It infuriates me when this happens.   There are infinite diagnosis tools out there, but doctors need to listen to us and validate that we know something is wrong.


If you are brushed off, see #2.


Once you have doctors in place that make you comfortable, it is time to research


I don’t mean you should spend all your free time on webmd looking for diseases you might have.  But after discussions with your doctor, go on-line and make sure you understand what you are being told.  And that there isn’t more to the story.  Confirm side effects, and check for drug interactions that may have slipped past your doctor and pharmacist.  There are many reputable sites for medical information.  If it sounds wacky, it probably is.  But make notes and ask additional questions of your doctors.


If my doctors aren’t rolling their eyes by the end of my appointments,  I don’t feel like I’m doing my job as an informed patient.   Bonus points if they tell me to stay off the internet.


Finally, find a support group, either local or on-line. 


These are your people.  They are your tribe.  They have been through what you are facing, and have tips and hacks.  And some may be at your stage of treatment, so you have someone to face it with.


Facebook has groups for pretty much every medical condition.  They are an information rich environment to learn from others, and hear about treatments your doctor may not be doing.


Just a few safety pointers, though.


Do you feel comfortable sharing in the group?  Are other members respectful to each other, and do admins enforce group rules?  Is there any vetting of new members?   Are admins or other members actively trying to market products or services to you (a sign that the group is not about support)?


Remember that anything you share on-line is immediately out of your hands, so you want to ensure that you have a safe environment.  It should be a place you feel at home.  If not, you may want to keep looking.


And that is my primer on the first steps to becoming an informed health care consumer.   There is too much technology at our disposal to not be an active participant in our treatment.


And remember, the key word is “eyerolls”.   That means you are doing this right.

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.




“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.


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.








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.



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.

Are you my mother?

Today as I write this, my mother would have turned 72. This is tragic given that we lost her to metastatic breast cancer when she was 30. I’ve often wondered over the intervening forty-two years what she would have been like. Would she be proud of us? Would we be close, and talk, and laugh?


Would I find that I am like her?


The honest truth is that I have no idea on that last one. The six-year-old me only knew Mom. The person who put band aids on skinned knees, broke up the bickering with my brother, and told me I really had to go to sleep because she just saw Santa Claus landing on the house next door. I didn’t get to know Mom the person, but I know she had to be amazing.  How could she not be?  She created my universe.


All the years I was growing up, I tried and failed to feel her presence. Anyone who knows me, understands that I don’t believe in ghosts and spirits in the traditional sense. But I do think that when someone has had an important place in your life, they become a part of you mentally. I know this was true with my grandfather. He was there every day for me, and after he passed away when I was 25, I still felt his presence. I think of him when I hear an off-color joke that I know he would have appreciated. I think of him when I eat baked beans, one of his favorites. I love to reminisce with my brother about all the crazy adventures we had camping with grandpa. He was colorful, and lively, and I love how much I am like him sometimes.


I don’t have those memories of Mom. The memories that I do have became hazy with time, as has her presence. Its not that I don’t remember her, it is just that it is like a dream.  You know you had it the next day, but there isn’t always clarity.  Much like watching an old 13-inch black and white tv with an old rabbit ear antenna, the picture is sometimes a bit scrambled.


It’s a part of my life that I have hated.  I look at pictures and don’t know what they mean.  I ordered a copy of my birth certificate about ten years ago, and was fascinated with her signature.   Up until that point, I don’t recall ever seeing her handwriting.   I’ve clung to scraps of stories to get insight into her nature.  But it’s like watching a movie of someone else’s life.


When I was first diagnosed with breast cancer, I thought about mom a lot.  As I began to work through my emotions, I began to wonder what her journey was like.  I tried to imagine going through cancer with two young kids, and my heart broke.  As I have come out the other side as a survivor, I count myself lucky because I know how it can turn out.  And how it may turn out in the end.


As I was struggling last week with what I wanted to say in mom’s memory, I received a message from one of my most dear friends and fellow breast cancer warriors.  She said during a recent meditation she had felt mom’s presence, and that she was proud of me and the work that has become my passion, educating the world about breast cancer.  And I suddenly realized something.


For the first time in many years, I feel mom’s presence beside me.  I have a glimpse into what she experienced, and for the first time in a long time,  I embrace that we have shared the same path.  I share something with her that no one else did.  And even though it is a horrible, ugly disease, I think that we share a common goal – to fight for all those who are afflicted.   Because I want everyone who has metastatic breast cancer to understand one thing.  Your children will not forget you.  They will love you always.  They will always look for more insights into who you are.  And hopefully one day, we will find a cure for metastatic breast cancer so no more daughters and sons have to spend their lives looking for a connection.


A cure.


For me.  For you.  For us all.