Just the Facts, Ma'am

By the time most of you read this, I will be in surgery.  Thursday, December 11, 2014, at 7:30am, I will have a bilateral mastectomy. That means both my breasts, including nipples, will be removed.  The breast surgeon will remove one lymph node, have it biopsied while surgery is going on, and find out if any cancer cells have spread to it. This will help determine staging of my cancer, which are those numbers you hear - one, two, three, and four (which is metastasized cancer).  

We are expecting a stage one.  We are praying for a stage one, no evidence of disease spreading, and no evidence of disease in the other breast.

As I have opted for reconstruction, the breast surgeon and the plastic surgeon will both be in the operating room. As the breast surgeon finishes, the plastic surgeon will take over, inserting expanders into my chest between two muscles.  These expanders will allow the muscle to gradually stretch, so that permanent implants can eventually be put in.  That process can take months.

In the meantime, I will be healing and awaiting results on my tumor.  The breast surgeon will send my tumor (which is small, 1.7 cm - that's good) to a lab which will Oncotype it.  This test is really, really neat.  See, breast cancer is really rather rude.  You can remove it, and years and years later it can return or metastasize  even though you took it all out! This test tells you how likely it is your cancer will return.  This helps determine whether you need chemotherapy.  So, I will not know when I wake up from surgery if I need chemotherapy or even radiation.  

My hope is, of course, that I need neither.  My hope is the surgery goes well, I heal fast, and my cancer is so tiny and nothing that I never ever have to deal with it again, and instead I can spend my time and energy advocating for research into stage 4 breast cancer. 

I am being treated by really good surgeons at a really good cancer center in NJ.  It's Cancer Institute of NJ, aka Rutgers, aka Robert Wood Johnson.  I like my surgeons and feel comfortable with them.  Both their coworkers and their competition praise them.  My breast surgeon said to me, at our first meeting "I'm not just treating your cancer, I am treating you as a person".  My social worker heart warmed at that!

So those are the details to the most frequently asked questions.  I hope it helped to have that info there for you.  Thank you from the bottom of my heart for all the love and support. This is a huge, huge deal to me, and it's been hard at times and sad and there is definitely loss there, but I am constantly amazed by the love I have received and how much it has helped me cope.

Stay tuned to the Facebook page for updates - it's right here - Not A Cutesy Slogan and if you would like to help out if we need it, my friends are coordinating things over here: Lotsa Helping Hands.

Be well, and I will see you on the other side of surgery. 

As Seen on TV

To be honest, I don't remember what kind of kid I was. But I know what kind of adult I am. I'm engaged. Sometimes I see a flash of it in my daughter, in her inability to stop speaking, the way she always, always raises her hand and must contribute to every conversation. If you ever sat in a class or meeting with me, you know that's an accurate description of my behavior. When I have literally nothing to say, my husband checks my head for a fever.  

This engagement helps with cancer appointments.  Up until October 28, 2014, I was incredibly healthy.  There is really nothing wrong with me but this tiny bit of cancer that is radically altering my life. So I have never had all those tests and procedures that you hear about and see sometimes in television dramas.  And I have to say, they are really neat.

Do you know how an EKG works? They put these little disposable stickers on you, attach leads to them, and bam! Done. Results printed out.  How amazing is that?  Tomorrow, I will have radioactive dye injected into me and the doctor will be able tell which lymph node is most affected by my tumor. A day after that they will give me a drug that helps me relax and forget the scary ride to the operating room. Now tell me science isn't cool.

I find myself writing comments on the many, many forms I fill out. Every time a hospital asks me about my mental state, if I feel emotionally and physically safe, or any other social health history questions, I get kind of excited.  There is my profession at work! Woo!  The other day I wrote "good questions!" in the margin. Someone designed that form, someone else fought for the inclusion of those questions, and I just hope they know how excellent that was.  


There is a part of me that is like, I can't believe this is happening to me, especially when every nurse, registrar, and tech remarks on how young and otherwise healthy I am. But the other part of me is like Oh my goodness this is so cool! Look at that machine! Hmm, what happens next? I take selfies in the many, many different gowns I don for the many, many procedures.  I text my girlfriends from the waiting rooms. I find myself with a collection of those hospital bracelets. I considered making a fairy chain out of them they way I do with the paper napkin ties at restaurants.

Then I decided not to.  Some things you don't need to remember.  

Just Like College Admissions

I never really thought I would be diagnosed with breast cancer, but I swore to myself that if I was, I would get the best treatment.  I would go for second and third opinions.  I would seek out experts and research facilities and I would make the most informed decision possible.

That is far easier thought than accomplished.

It also speaks to my judgment on how my mom handled her care, whether or not I meant to make that judgment.  I spent my entire adult life with my mother's cancer.  I was 21 when she was diagnosed and 38 when she died.  I knew nothing else.  I saw her cancer up close. I was let into some, but not all, of her decision making processes. But I didn't understand it. How can you truly, in the parent-child dynamic.  I was angry about this for so long.  It wasn't until I was 38 and my mom was dying and I was starting graduate school that I actually understood why my mother and father had kept me out of some of those decisions, and carefully let me into others.

They were being good parents.  There was a line there - I was the child, still, and they were the parents.  They were protecting me.  They were allowing me to live my own life, unencumbered by responsibilities that were not mine. And, eventually, once I learned about family dynamics and structural theory, I got it.  The pieces fell into place, and I was grateful. Too late to thank my mom for it, but not too late to understand.  

Still, I wish I had asked her all those questions about why they made this choice or that choice in her cancer care.  One of the things I understood immediately was that this is seriously overwhelming.  Like, for reals. That nice scheduler at the breast center set me up with appointments on the very day I got my diagnosis.  I didn't know what I was saying yes or no to. I just said "okay" a lot and wrote down a bunch of dates. That was Tuesday.

By Friday I started to think for myself.  

I had a number of recommendations from friends on breast surgeons. (Turns out, my friends had friends who had breast surgeons). I had three major cancer centers I wanted to check out. I started to make plans.  I spent one entire day making phone calls and setting up visits and taking copious notes on everything everyone said to me.  Being a recent student came in handy.  I'm good at writing things down.

Cancer centers, it turns out, are kind of like college visits.  On the phone, they want all sorts of qualifying information from you - test results (scores), dates (grades), pathology slides (extracurricular activities). Once you get there, however, they start to woo you with their surgeons (professors), facilities (dorms, dining halls), and research studies (small class size).  Sometimes you even get freebies, like coffee, tea, and breakfast snacks. You find yourself saying things like Well, the bathrooms were really nice, and they have Starbucks on site.  

Once I realized that I could apply the fairly extensive college search I carried out 23 years ago to this experience, I felt a whole lot better. I am good at this. I like those qualifiers, criteria, statistics. I enjoy evaluating the hard facts and the soft feelings. When a doctor mentioned a study, I went and looked it up and read it for myself. (Thank you, MU, for not terminating my academic credentials quite yet.)

But it's not for everyone. It's a lot of work, at a time when you are lost, confused, scared, and panicked. It isn't easy. And once your decision is made, you are going to hear a whole host of opinions from people on where you should have gone - even if they don't say it aloud, they think it so hard you can hear them.  

That's okay, though.  It is scary, and love and concern look different from everyone. I feel confident that I am getting the best medical care and have made the best decisions. No doubts in my mind. And in the end, that's what really matters the most, isn't it?

But Indeed It Is

I found out I had breast cancer during a very strangely timed phone call minutes before I left for work.  It was not the World's Best Way to find out, but then no way is.

I was going in later that day, planning to stay for our evening hours. Nick was home, on a conference call.  I still do not understand the inability of the breast center to call my cell phone, but on this occasion, it worked.  The doctor of do you have a breast surgeon fame called me, and told me very plainly that while not all the pathology was back, it was positive for breast cancer.  She informed me that a coordinator would be calling me to set-up appointments. And that was that.

I told Nick.  I cried.  And then I got in the car and drove to the office.  

When I told my friend E this part of the story, she was incredulous.  But to me, it made perfect sense.  I like work. I like being there.  I like the people I work with.  It's sometimes frustrating and sometimes you don't feel like you make enough of a difference, but I am happy with what I do for a living and where I do it. I feel like I get to let go of some of my baggage at work, and just do what I am meant to at that time.  And we have fun.  We laugh.

So naturally, my coworkers were some of the first people I told.  It was pretty awful to see their faces crumple into tears, to watch the expressions that had been hopeful change to sorrowful. They did what every person after them did - told me they would see me through it.  


The next day, I went back to the hospital and had my blood drawn for genetic testing. The phlebotomist was very young and not very well trained in customer service.  At one point she told me to "cheer up" and that "things could always be worse".  (Maybe, but probably not on day two of a cancer diagnosis). Then she stuck a needle in my hand, which caused it to cramp up for days afterwards.   My right breast hurt. My right hand hurt. That night, when I went out for dinner with a friend, I couldn't see the menu because the room was too dark. I was massaging a sore hand, cradling a sore breast, and holding the menu up to the light. My (younger) friend was offering to read it for me.  I felt about 80.  I was a mess.

It seemed slightly ridiculous that this was my life, but there it was. It was laugh or cry. I laughed.  

The Bird

There is a belief, among many cultures and religions, that birds function as some sort of messengers between God and people.  You can find this in all kinds of religious writing and scripture.  Some believe they are sent from God, others from saints, still others from souls who have passed on. About a year after my mom died, I read a book about a woman grieving her father's death.  The author kept seeing birds after his death, so many that they could not be dismissed as mere coincidence.

Now, I am not saying I believe this.  I believe this author believes it, and I believe it has meaning for many people. But it was an interesting concept, and it kept showing up in my life. I started to joke about this, along the lines of hey Mom, why don't you show up as a bird? One day I was standing in Forever 21, waiting for three teenage girls to finish their shopping.  If you have not experienced that before, let me tell you that it is a particular level of hell.  On this day, I was kind of complaining in my head - I'm not sure why - about my mother's lack of birds.  Now, my mom was not a bird person.  She was not a nature person.  She was never, ever going to show up as a robin or a blue jay. Still, I was whining.  I had recently arranged to give away my grandmother's furniture, to a dear friend of mine.  While it seemed like the absolute best decision, I was still gutted about parting with it.  I felt like I was giving up my mom and my grandma.  Irrational, but there you go.  I needed a sign that I was doing the right thing. In the midst of this rumination, waiting at the cash register of Forever 21, I looked down, and I saw a set of bird salt and pepper shakers.

Forever 21 is not the sort of store that carries salt and pepper shakers.  I had never seen them before, and I have not seen them since. But there they were. Shaped like birds, with the words "share the love" on the box.  My mother was not a nature person, but she was a salt and pepper shaker person.  She had a huge collection of salt and pepper shakers. She started collecting them on her honeymoon and she never stopped.  When she died, I gave some to our family and friends.  If my mother was going to send me a sign, it would most certainly be in the form of a salt and pepper shaker.  I could just hear her voice saying Stop being such an ingrate! Here's your bird!

The next day, my friend Amy, who was doing a relay for cancer, asked if she could light a luminary in honor of my mother. I readily agreed, and she asked for a quote to put on the luminary, below my mom's name.  I wasn't sure what to give her, so I looked up the words to my mom's favorite song.  Although I have heard this song my entire life, and can sing all the words to it, I did not remember what the proper title of it was.  It's by The Beatles and it's called Norwegian Wood (This Bird Has Flown).  I almost fell over.

There were my birds.

After my biopsy, Nick and I went to CVS to get more ice packs for my bra. That's a fun side note - you walk out of the biopsy with an ice pack in your bra.  I needed one more, and some extra strength Tylenol, because you do not walk out of there with narcotics.  Just an ice pack, and a sheet of instructions, none of which are helpful. Drugs would be way more helpful.

I also wanted to go to AC Moore, because nothing says “it’s going to be alright” like doing a craft with your kid. After we walked in and started to look around, I noticed a woman.  She looked like my mom.  Same hair, similar face.  Like a heavier version of my mom, like my mom with weight on her.  I don't see a lot of women in this area who look like my mom - we have kind of an unique genetic makeup for this part of the country.  No one ever told my mother she looked like anyone else, with the exception of Meryl Streep. She got that quite a bit.  

So I was kind of staring, and nudging Nick, and willing him to agree with me that this lady looked like my mom and maybe this was a sign! A good sign, like even if I was about to find out I had cancer, I wasn't all alone. My mom was showing up, birds be damned.

So after maybe three times of "doesn't she look like my mom" Nick turned to me and said, "Maybe we should ask her if she's a bird".

Did I mention the funny spouse thing?

  

The New Normal

I had never made so many medical appointments in my life.

The day after my mammogram, I got a call back.  They said they wanted me to come back for a sonogram on the right breast and more images. 

I did not panic. I might have told my friend (boss) that she wished this on me, but that was not panicking. That was learning to laugh about it.

My appointment was for the following week. I found myself in the room I'd been grateful not to be in the week before, Diagnostic Screening.  I was one of those women. 

The tomosynthesis and the sonogram were quick, the techs kind. They let me get dressed and brought me back to the imaging room, where a smiley doctor with an open face read my images and told me they "recommended a biopsy".  As if anyone says No thanks, I think I will pass.  


There are signs up in the special changing area of the Not So Good Room, Diagnostic Screening. The signs show normal breasts and cancer in breasts. I'm not an expert, but that little dot on the "cancer" picture looked like my little dot. It did not look good.  Was it cancer? Was I supposed to be worried? Was I not supposed to be worried? No one was saying.  

On my way home, I  bought 10 bottles of wine, red and white. I had no intention of drinking them - I purposely do not drink when I am upset.  Nope, this was just part of being normal. What if friends dropped by? Now I had something to serve.

The following week, my third time at the breast center in as many weeks, I walked in knowing the drill.  First, registration.  I greeted the staff member by name and introduced her to my husband, who had taken the day off work.  We saw yet another statement of escalating costs.  Cancer screening is not cheap.

Then, the geneticist. We went through my entire family tree, and I managed to forget at least half of my relatives.  We discussed genogram software   She talked about risks and options for testing. We made jokes.  Later, I found out my file had "highly suspicious" on it and the geneticist knew, before I did, that I would be diagnosed that week.  She encouraged me to wait, get my results, and then decide on testing.

Next up was my biopsy.  Again, I sat in the Not So Good Room. I saw the high risk nurse practitioner who interrogated me on why she hadn't seen me before (I just turned 40) and on why I didn't feel this mass.  She claimed she could.  (Later, a surgeon told me that was utter bullshit, but I didn't know it at the time).  Then I was passed to a lovely sonogram tech, who explained the procedure in detail and marked my right breast with the word "yes".  For some reason, I found this very funny.

It was an ultrasound guided core biopsy, and I could see the entire procedure on screen. If it wasn't my breast and my health in question, I would have found it really neat.  The tech held my hand the whole time, never letting go of me once, and she talked me through it. As the doctor wrapped up, she asked me if I had a breast surgeon.  Um, no I replied.  Do you have any friends who have a breast surgeon?, she asked.  In my head I was thinking I'm 40.  FORTY.  We have babysitters, not breast surgeons.  But I just said no.  Well, she said, you need one.  

Even if this isn't cancer.

That should have told me everything.  But it didn't.  I still hadn't gotten the message.

Routine Screening

When I was 34, I had a mammogram. They like to call these "baseline" mammograms.  It's supposed to set you up for a lifetime of better, easier, happier mammograms.  I went willingly.  In fact, I practically bounced to the appointment.

I was very skinny at the time, and very chipper. It was a positive, proactive experience.  The tech complimented me on my weight loss and my easy to read boobs and everything was just wonderful.  

For me. 



My friend Jodi, who went with me, got a call back.  Nothing came of it, thank God, but it still complicated things and caused her anxiety.  But I was not focused on Jodi.  I was all about my glowing health and vitality and my positive, proactive stance.


At some point, I made some sort of decision that I would NOT get breast cancer, probably during my rather frightful phrase of poorly researched pop psychology and self-blame disguised as personal growth.  And then I promptly forgot about it.

When I graduated with my Master's in Social Work in May, I made a big list of things I would do. One of them was: Make GP appointment.  Another was: Make Ob/GYN appt.  I did both.  I was impressed with myself, in the way you are when you have convinced yourself that you are totally and completely healthy and have no need of physicians at all, and doing this is just an exercise in self-care.  My appointments were startlingly normal.  I had masses of blood work done, and two clinical breast exams, and all the tests came back showing that I was unbelievably healthy.  I felt very proud of myself for all this. I was doing the right thing.  

I did have a little script for a mammogram, and one for BRCA testing.  So of course I scheduled a mammogram, a routine mammogram, with confidence.  I wanted to do it right away, during the summer, when my work schedule was known.  Alas, the insurance company insisted I wait until my 40th birthday, since I had already had my baseline mammogram.
 So I waited.  And because this was still a positive, proactive thing, I dragged my friend (and boss) Lisa along. It was an outing! The breast center, attached to a medical center, was cheery and festooned with pink for October, breast cancer awareness month (aka breast cancer merchandising month). Ignoring my inward groan at the pink washing, and swallowing down any snark,  I filled out the paperwork, did my high risk screening, and waited.  Lisa went back, got her mammogram, and was finished.  My waiting was rewarded with the tag of "high risk" and I was taken to a fancy machine, called a tomosynthesis.  I passed the women waiting in the other room, the one called Diagnostic Screening, and I thought This is a bit nerve wracking but at least I'm not there.


We went to work, my friend (boss) and I.  An hour later, she had her results in her email.  I had nothing.  We joked.  Not good, she said.  I laughed. 


And then my new normal began.