I'm Not Afraid of Getting Older

Five years ago today I was diagnosed with breast cancer. I was at home.  I got a phone call.  I gestured to my husband, who was working from home, to come up from his office to the kitchen. This was a Serious Call, and it was on the landline.  I got off the phone.  I told him.  We hugged.  I left for work.

On the way to work, I made my first phone call of many, sent my first text.  It is horrible to tell people you love that you have cancer, because they worry.  You can practically see the worry start and how it wraps around them like a wet blanket that’s coming unstrung.  It threatens to drag them down, and you do not want to be responsible for that.

But me?  I am good with bad news. I am great at bad times. I was made for crisis.  You can tell me the very worst thing and I will take it in and I will not run screaming. I was made to float when you think you will drown - grab onto me. Just don’t ask me to break your heart, because I do not want to do that. I refuse. 

So, this was not the worst thing that ever happened to me, but I was afraid, because I knew it was going to rock the world of my ten year old, whose experience with breast cancer was that you have it, and then you die. And my husband, who would have to be my caretaker, and my close friends, who had watched me lose my mom two years before, and my father, to whom this would be a nightmare coming true. 

I knew I could deal with this. I was prepared. My mom and I had spoken about what I would do if I ever got diagnosed: how many cancer centers I would get opinions from; what choices I would make regarding surgery and reconstruction; how open I would be about my diagnosis. Conversations like these, which we humans instinctively shy away from, are my wheelhouse - I get them.  I know why they need to happen. Years before I went to school for social work, before I learned the skills and the value of vulnerability, we leveled with each other.

But I was angry.  I have no issue with smokers - honestly, I love the smell of someone lighting a cigarette, because it reminds me of hanging out in NYC in my 20s - but I found myself irrationally wanting to yell at people smoking outside the office complex near my home. I had cancer and they got to smoke? Not fair! 

I was angry that my daughter was afraid.  I was angry that this was hurting my people.  I was annoyed to hell that I needed to have a thousand blood tests, especially the genetic testing, which left me with a horrible bruise on my hand, pain so bad that I couldn’t even cut my food at a restaurant.  Want to feel old and sick?  Ask a friend who is younger than you to cut your dinner. (The lighting was also so dim that I couldn’t read the menu - I had just turned 40). We laughed, so we didn’t cry.

So, no, I did not sail through this with unusual grace and calm and purpose. It was an easy diagnosis, it was an easy time, comparatively, by all accounts. But it fucking sucked. Cancer was not, and never is, a gift. 

The last time I wrote on this blog, I was months away from a 3rd cancer related surgery, and a year away from my 4th, which was possibly the hardest recovery out of all of them.  I say cancer related, because while my bilateral mastectomy in 2014 removed my breasts, skin, nipples, breast tissue, and cancer, the other 3 surgeries were directly related to my diagnosis.  The second was reconstructive surgery, which put in permanent implants in place of my temporary ones.  The third was to remove my ovaries, which took place on October 28, 2016 - three years ago today and on my two year cancerversary. This surgery put me into menopause at the age of 42.  The fourth was a hysterectomy, removing my uterus and cervix. In between surgeries 3 and 4, I had a uterine cancer scare, with multiple biopsies and even a D and C coming back inconclusive.

That sucked, too.

But how did it change me? That is what I've been mulling over.

It changed my body image, because my body changed radically and kept changing. I have healed some of that with time, and some with the help of some loving and amazing humans who have given me radical acceptance.  That has been an unexpected surprise.

I have different boundaries now.  I know I physically cannot do some things on certain days, because of the chronic pain I have, and I've started to speak up about that in more productive ways. I'm coming to a place of no shame - pain is pain, and it's not my fault.  On the contrary, it's a sign of my survival. 

I am committed to a life that works for me. This includes my working environment, and the type of work I do. The company I keep.  How I spend my free time. If you know me from social media, you see an onslaught of images that speak to travel, Broadway plays, Disney trips, concerts, activities. Time with friends, time with family.  I don't have a bucket list, but I do have conversations with myself that ask if this is adding or subtracting to my life. I try to balance my need to be alone and recharge and my desire to live as much as I can, and to say yes to things that challenge me and feed my soul. I carpe the hell out of the diem. I want to leave this world with a million memories, and I want you to have so many of me that you can't pick your favorite. 

I've learned it's okay to make new friends. I say this with hesitation, because my instinct as a human being is to keep to myself - but my choice when I got diagnosed was to be open and vulnerable, and my choice now is to stay open and vulnerable. I've lost people I loved in the last 5 years, to death and to cutoff, and those losses still hurt. But it would be a sad life if I stopped learning and loving and losing. Or, more to the point, it wouldn't be very "me". I am made for human connection, it's the thing that feeds my soul the most. So, maybe my heart will be broken a few hundred more times  - and that's okay. Grief is the price of love. I choose deep love and connection.

I am acutely aware that while the days may be long, life is short, and it is hard, but precious. "Brutiful" is what writer Glennon Doyle calls it.  Beautiful and brutal at the same time. Everything in my life, that I have lived through, and that I have witnessed, has taught me this. So that is why I want to acknowledge what was hard, what is real, while I celebrate.  It is never one or the other. Happy and sad. Joy and sorrow. They walk hand in hand.

I'd like to tell you that I became more grateful and spiritual and deeply connected, that I stop and smell the roses, but I think I always did this.  I am definitely the weirdo that notices the pattern the rain makes and how leaves smell and the way the sun hits that spot.  I take pleasure in the really small things. I'm really lucky to be here, on this earth. To know you. To live my life. 

I hope that in 5 years I can write this same type of self indulgent navel gazing reflection, and that there are still some of you to read it. But, until there is a cure, I ask you to consider donating to Metavivor, which directly funds research into metastatic breast cancer. This research is so important for the women and men living with this disease, and the ones yet to be diagnosed.  

www.metavivor.com

And, thank you. I knew I was not alone, and that's because I was loved and supported. I'm so grateful. 

Song title from "One More Day" by Rob Thomas

On follow ups

I'm writing this from a doctor's office. Specifically, the cancer center where I was treated. I was initially going to whine about the amount of doctor's appointments I go to, which is, frankly, a remarkable lot. It's disruptive to my work life and to my personal life. It's exhausting. It's a drag. 

I try not to publicly complain about my diagnosis, or treatment, or ongoing side effects from the drug I take. Mostly because it's boring, even to me, but also because I feel pretty lucky. I only had a bilateral mastectomy. I only get joint pain and migraines and ovarian cysts. I only need follow up every three to four months. 

I know it could be different. 

I look around the waiting room and I'm the youngest person in it. Yet in the past few weeks, I've learned of more women my age being diagnosed with breast cancer. What gives? 

While we could conceivably argue what age is middle aged, I think we can all agree on basic science and research. Cancer is not a disease of your 40s. It's sure as hell not a disease of your 30s. There's always outliers but I can't help but wonder why there is this epidemic of women in my age group with breast cancer, both early stage and stage 4 (metastatic). 

Is it that we have better detection? If so, then the latest recommendations about mammograms should be thrown out. We should all continue to get mammograms and be screened. 

Is it environmental? There's no research proving this, and I have to think the super smart people who do this work aren't missing something huge. 

Deodorant and soy and birth control pills have all been blamed, and all the peer reviewed evidence based research says "yeah, not so much". I'm not a fear monger and I don't believe oncologists or drug companies are hiding the cure. 

As tired I am of being screened for every cancer under the sun (although I do love my dermatologist, gastroenterologist, and gynecologist), of making the drive to have my non existent breasts examined (there's a chance that even with removing both breasts, some tissue can be left behind), or of discovering new and fun side effects from the drug I take, I would gladly submit to even more appointments to secure my health. Or to find a cure for my sisters. 

Today, I got good news. Everything looks great (I mostly have my plastic surgeon to thank for that) and I don't have to come back till October. And, if I'm a very good girl and don't grow lumps, I get to drop the surgical follow up all together! 

Although it's a pain in the ass, and it changed my life in ways I couldn't imagine, breast cancer was not the worst thing that happened to me. And for that I'm thankful. 

As always, if you feel moved to donate money, please donate to stage four research. www.metavivor.org

Enough Awareness, We Need A Cure

Today is Metastatic Breast Cancer Awareness Day.

Why should you care? Why do I care so much?

40,000 women and men die of breast cancer yearly, and those numbers are probably low. My own mother's death certificate doesn't list her cause of death as metastatic breast cancer. But that's what killed her. 

It's the ONLY kind of breast cancer that kills. If a woman or man dies of breast cancer, it's because it was stage 4, metastatic. Their family might not say that. Their death certificate might not say that.  But that is what killed them.  

You do not need breasts to get stage 4, metastatic breast cancer. You could have had your breast tissue removed and still get metastatic breast cancer.

20-30% of women with early stage breast cancer - and that is women like me - will develop stage 4. They could have done EVERYTHING right  - surgery, chemo, radiation, Tamoxifen - but 5, 10, 15 years later the cancer will show up in their lungs, bones, liver, or brain. There is no way to prevent this that we know of. We try with surgery, chemo, radiation, and drugs like Tamoxifen but that doesn't always work. Early detection doesn't save lives. 

6-10% of women are diagnosed with Stage 4 initially. This means that they never had an early stage breast cancer diagnosis.

If you have Stage 4, metastatic cancer, you are in treatment for the rest of your life. You will NEVER be cured. You will never be DONE. You might do really really well, get a nice break. You might find one treatment that worked great doesn't work anymore.  There's no way to tell. You might live for the average of 33 months, or you might live for decades. It's a crappy crapshoot.

Everyone knows about breast cancer. It's no longer something we whisper about. We no longer need people to be aware of breast cancer. We need people to know the reality. It's not always a happy pink story and a "survivor".

Why do I care? I care because I am the daughter of a woman who died of stage 4, metastatic breast cancer, because I had stage one breast cancer, because my sisters are dying and we are telling them to have hope and courage and faith - and that is MEANINGLESS unless we are going to find a CURE.

So, this is depressing and heavy but, like, what can YOU do? I'm glad you asked.

Educate yourself. The more you know, the more you understand.  Read what other breast cancer activists have written. Follow some kick ass Stage 4 women on Facebook. Listen to not only the experts on this disease but also the voices of the people living with it. Their voices matter.  

Educate others. A friend of mine sat down and had a chat with his school aged son about why pink for awareness is useless and how to better support women and men who have been diagnosed. Another friend speaks up when she sees pink ribbons waving. You don't have to have had breast cancer or Stage 4 to say something.  Advocating for Stage 4, metastatic awareness is something anyone can do. Share your knowledge.

Donate. An average of 2% of breast cancer money goes to research for a cure. Less than 1% in some very big organizations. There's effective treatments for early stage breast cancer, and that's great.  Women like me are living longer. But we still have this huge number of women and men who are being diagnosed with stage 4 initially or after years of being "cancer free". So donate to Stage 4 research.  I'm a big fan of METAvivor

I hope this post gave you some new information on Stage 4, metastatic breast cancer. I hope you if you come across something breast cancer related and it makes you go "hmm" and you want to bounce it off someone, you reach out to me. I hope awareness spreads so fast that I never need to do another one of these posts. I hope we find a cure. 

Here's some links for further reading.

13 Things Everyone Should Know About Metastatic Breast Cancer


Ten Things Wrong With the Pink Ribbon


Pink Marketing for Breast Cancer; Where's the Payoff?

The Closer I Am To Fine

This post is brought to you by my favorite band, the Indigo Girls, the "shall remain nameless anti breast cancer" drug, and my wonderful, supportive friends and family.  If you aren't as in love with the song as I am, you might want to read the lyrics to make sense of my writing: Lyrics to "Closer to Fine"

I've been an Indigo Girls fan since my senior year in high school, roughly around 1991, when I spent many hours listening to music in cars with boys. Although I find it deeply ironic that straight, white men introduced me to Amy and Emily, so it was.  Their music changed my life.

In particular, one song always spoke to me the loudest.  I was one of those kids that make better adults. I was serious when others were jokey; I was heartbreakingly real instead of cool. I only knew how to be myself, and it wasn't always easy to be that self.  I never mastered that "couldn't care less" attitude that let others breeze through middle school corridors. Or high school hallways. Or college dorms.  

So I fell in love with these two girls and their music, self styled outsiders who sang honestly and authentically about not being cool, or funny, or anything but serious and real and scared sometimes.  I was a perfectionist, never up to my own standards.  I was a seeker, always trying to learn and search and explore and improve. I was pretty sure I was alone in feeling that way. But their music made me feel like maybe I wasn't the only one.

A few months ago, I went to a wedding.  It was beautiful and full of love and exactly the kind of wedding you want to attend. It made me feel good just to be there.  I was seated next to an attractive, dynamic woman a few years younger than me who disclosed over dinner that she had been diagnosed with breast cancer several years ago.  Later, she mentioned that she was a social worker.  I about fell over. I'd like to tell you that I was sad to hear of another woman diagnosed so young, but that wasn't my first reaction.  My first reaction was disbelief and then I was ecstatic. I was so happy to have someone to talk to about it.

I've mentioned before about cancer being isolating, about how I almost hate writing about myself in this way, about how I don't want to whine. All of those things are true.  I think I have a good life.  A great life.  I know how bad breast cancer can be, and is, for so many.  But it still sucks for me. I wish there was a more eloquent way to express that sentiment.  Cancer.  Sucks.

I hate how cancer has changed my body - my body that I was, for the majority of my life, in love with. I liked how I looked.  I wasn't perfect but I was me. But this body is one I'm still not used to. I barely even know it. I haven't fallen in love with it yet. 

I hate how cancer has changed my actions.  Before cancer, I was strong in my legs.  I could complete a half marathon.  I could take a long yoga class. I could walk for hours. Now, it's different. Fatigue and pain followed both surgeries; the anti-cancer drug I've been on since February comes with side effects that include joint pain severe enough to limit my mobility and bring me to tears of frustration.  

The first month I was on it, no side effects! I thought I dodged them - I was one of the lucky ones. Then in month two, it felt like the flu, the way your whole body aches and then settles into your joints. I figured out pretty quickly that it wasn't the flu, but drug related. So I looked for answers. (I went to the doctor, I went to the mountains) I exercise the prescribed amount to prevent the joint pain; I take the correct amount of supplements shown to combat the discomfort.  I follow the recommendations on sleep, and activity, and whatever else has been shown in real, legitimate research. I work consistently to prevent it.  But sometimes I don't prevent it. Or I can't. 

I feel embarrassed to admit this, even to my closest friends.  To say "we need to find a table; I have to sit down because I'm in pain" feels really awful. I've canceled plans with girlfriends.  This weekend I had Nick turn around and take me home to rest instead of to a family party. Last summer I walked 5-7 miles a day in London and felt terrific; this summer in Vienna I could barely do 5 miles a day, and not consistently without hurting. It annoyed my companions and it brought me to tears.

This week when a friend texted me about the Indigo Girls and their song Closer to Fine, it reminded me how much I love the song, how long it's been "my" song that I use to define myself, how I'd always loved these particular lyrics and how I'd long wanted to get them as a tattoo:

The less I seek my source for some definitive, the closer I am to fine

This is a very long of way of saying that it's been a little rough lately.  It seems my (very reasonable) expectations for myself have to change.  And I hate that.  I hate every bit of that.  I want to believe that if I just get it "right" I will feel good and not be in pain and not have to slow down or change the way I move through my world. I don't want cancer to change one more thing on the long list of things it has altered without my permission.

I want an end date to this. I want to know that if I search for and find the right answers, I can make it work.  I can be back to normal.  I want an answer, a definitive answer, a fix that says "okay, this pain will not get worse or continue, just do this and that and it will be done".  But I don't know if that's even possible. It hasn't been so far, and it's not from lack of trying on my part. I could easily be facing ten years of this side effect, plus new and different ones.

What I think I need to do is realize that this, like everything else in life, is not fully in my control. I might have this pain for the entire ten years I'm supposed to take this drug; I might suddenly stop having it.  It might be better some days and worse others and maybe nothing I do will make it go away.  Perhaps it's not a failing on my part - I might not be able to "fix" it.  

It could be time to get that tattoo - or at least tape those words to my mirror - to remind me not to seek the definitive. To remind me that my searching isn't useless but that all the answers are not found in the ways and times we expect them. 

Surgery, Take Two

Tomorrow morning I am having a second surgery.  My first surgery, in December, was a bilateral mastectomy.  They took my breast tissue, the skin surrounding my breasts, and my nipples.  My plastic surgeon used donor tissue to create a pocket to hold an implant in my chest cavity, and inserted the implant, called an expander, into my chest cavity.  He pulled the skin from below and above where my breasts had been, and sewed a neat line across the two lumps where my breasts used to be.

Then he used a stud finder to locate a piece of metal in the expander that was placed in my chest cavity and under my skin, inserted a needle through my skin into the metal disc under my skin, and filled the expander with saline.  This is called a "fill".

In the weeks after my mastectomy, I would go to my plastic surgeon's office, where he would use the same type of stud finder, locate the metal disc in the implant under my skin, and mark it with an X.  Then he would swab it down, and insert a needle and pump saline into the expander.

The act of this never hurt, only pinched or felt kind of uncomfortable.  But I got used to it.  It became commonplace.  Sometimes my chest would hurt the next day, very painful in the beginning, and less so as time went on.  The muscle anchoring the top part of my expander would be pulled and stretched from the saline injection; as the expander, well, expanded, the skin and muscle would stretch out.

The end result of this a size and shape that approximates the breasts I once had, or failing that, the size and shape of breasts that might exist on some woman somewhere.  These lumps look nothing like my breasts.  They look like oval shaped lumps.  They feel like hard rocks encased in plastic.  You can feel the metal disc easily, if you just lightly touched my chest.  I could flex my pectoral muscles and move my expanders - it was sort of my party trick for the first half of 2015.

What happens tomorrow is called exchange surgery.  It sounds so simple, doesn't it?  Pop one out and put another in!  Well, it's a bit more complicated.  The surgeon will open up the same incisions he used for my first surgery. He will repair the pocket on my left side, and possibly my right, too.  He will remove the expanders and place permanent silicone gel implants in my chest cavity. These are nicknamed by the press "gummy bear implants", if you want to google them.  Then he will sew those incisions back up again, another neat red line across the two lumps on my chest.  It should take about two hours, and I will be under general anesthesia.

Today I was thinking about this surgery, and how much we as a society downplay breast reconstruction.  This surgery is not the end of my reconstruction, it's merely another step in the process.  It will take weeks of healing before the implants "settle" and I could face further surgeries or procedures to get my body to have something that vaguely resembles the breasts I lost.

In short, it's not a "boob job".  I am not getting new boobies, and they will not be better than yours when we are 80.  I can only surmise that our language around reconstructing a body part generally seen only in women is another mark of sexism, misogyny, or the patriarchy.  I cannot imagine gleefully commenting on the rebuilding of a leg or arm, for instance, the same way my long and sometimes difficult breast reconstruction is remarked on.  I cannot imagine saying "Well, you are lucky!  Free bionic arm, dude! Better than my arm!"

Yet it's okay to say that about women's breasts.

Let me be clear.  I am not speaking for anyone else but me.  I am not the representative of all women, or all women with breast cancer, or all women with stage one breast cancer who opted for a double mastectomy and implant based reconstruction.  If you personally want to call your breasts "the girls" or "boobies" or "tatas" or any other slang term, you have that right.  I do not want those body parts that I had amputated called those things.  They were breasts, so that's what I call them.  I'm not calling my big toe a "piggy", either.  See the blog title - Not a Cutesy Slogan.

When I started this blog, I asked a lovely writer if I could use that name, and she told me she didn't own it - of course, go ahead and use it.  She's a kickass sister in arms, and I urge you to read her and her blogroll on this same topic of the language we use. There are links at the end of this post. There are many of us women who have lived through or died because of breast cancer who reject these terms.

I almost didn't continue this blog.  I almost deleted it.  I didn't want to be seen as a mouthpiece for all my fellow sisters, and I didn't want to be seen as an attention seeking navel gazer.  I just wanted to speak my truth in the hopes that my voice had a purpose larger than my little life.  I struggled with this for months - my feeling that personal blogging was pure hubris, but my conviction that those who speak their truth change the world.  I had a small army of people telling me to write, and a small army of voices inside my head telling me it was silly. I haven't really reconciled this, I have just come to the place where the words need to get out - so out they go.

Tonight I want to thank all of you who cheered me on, who prayed for me or said nice things when I wrote something or sent me a random text or held me in your thoughts.  I want to thank all the professors in my life who helped radicalize me, and the women who taught me a lot about the inequalities and inequities of cancer, cancer treatment, and what kinds of cancers get attention.  I want to thank all the teachers that taught me compassion and kindness and empathy.  I want to thank everyone who said in one way or another, "you have a voice - use it".  I plan to.

And if you have read this far, I hope you come back.  I have a really funny story about how the hospital lost me the night before my surgery, and some really interesting links to read and discuss, and some good old social justice rabble rousing.  And possibly some navel gazing, too.

Here's some links to keep you busy while I'm having surgery!

Get Up Swinging

Nancy's Point

Living Beyond Breast Cancer

Cheers!

No More

Today is the anniversary of the day my good, sweet, smart, big hearted friend left her abuser.

You know the kind of friend who holds you when you cry?  I sure hope you have that kind of friend.  She is that kind of friend.  You can call her in fear or frustration when things are scary or upsetting in your life, and she will manage to take the call in the middle of her work day and talk you off your ledge.

She is magic in the kitchen.  She creates whole meals from absolutely nothing at all.

She is wicked smart.  She finished her undergrad and graduate degrees while working full-time and raising two kids on her own.

She's someone you can laugh with. I have laughed harder with her than I knew I could.

My sweet, kind, amazingly talented friend was pregnant with her second and had a young child when she said no more. Eleven years ago today, she left the man who had fathered her children, built a life with her for years, and emotionally and physically abused her.  

She did not have resources, she did not have family support, she did not have money or a college degree.  It was years before she told anyone the truth, and even then it was years before she told more of her story.

I did not know her then, in those years.  I met her after, when she had made a life for herself and her children, when she was starting to tell her story.  

I never forget that I might not have met her. That without her decision eleven years ago, she might not be here.

So today we celebrate that anniversary.  Eleven years ago she said "no more".

If you want to celebrate with us, my friend suggests donating to her local domestic violence center.  She says "Instead of expressing sympathy or rage, please consider donating to Albion Fellows Bacon Center .  Click the "Donate Now" button.  If was all donated 1 hour of pay, we can make a huge difference!" 

I'm going to say that you can donate in your community, as well.  But just as important, I am going to ask you, today, to speak up.  

I have come to trust her and rely on my friend for many things, and one thing I never question is her sense when another woman is being abused.  She, who lived in shame for so long, is not afraid to see it. She is not afraid to name it. She is not afraid to say "this is not right".

My friend might not have been alive if she had not made that decision eleven years ago.  My heart breaks at that thought.  So, please, if you know a person who is living that nightmare, speak up.  Do you suspect that things aren't quite right?  Say something.  Do you know, without a shadow of a doubt, that what your friend deals with is emotional abuse?  Tell her.  

Silence is not helping your friend.  Silence says "this is okay".  It is not okay.

So today, I beg you to have the courage to speak up, to reach out, to risk a friendship in order to save a life.  Domestic violence lives everywhere. It's in the nice neighborhoods and it happens to people we know, people we love. 

Today, I wish you a happy and healthy Valentine's Day.  I wish you the gift of loving yourself.  I wish you a long life free from violence of any kind.  And I am thankful for the decisions, people, and interventions that brought my friend to a safe, happy life.



The National Domestic Violence Helpline

1-800-799-SAFE (7233) 

I carry it in my heart

I'm not an expert on mothers. I had a mother and I am a mother, but that doesn't make me an expert, except on my own life. 

I'm not even the most reliable narrator of my own mother's life, because children never are. We see our mothers through our lens, not theirs. We don't see them as their friends do, or their spouses. We see them weighted with our own myopic view. We see them as part of our story, not the center of theirs. 

So I will never know the true story of my mother's life. I will only know how it affected me. 

Today would have been her 68th birthday. I remember when 2013 dawned, I was a little sad because I had to say goodbye to the last year my mom was alive. 2012 is the last year that held her in this world. 65 was the last age she turned. 

In some ways, her passing defines my life in the same way that the birth of my daughter does. Bookmarks of significance that shaped me as a woman, a human being. I find myself telling the story of her death and my starting grad school as inextricably linked. If you haven't seen me for years, you need to know this about me. These things happened. They matter. 

My mother liked to say that the last birthday she celebrated, the last one she wanted to celebrate, was her 29th. It started on a Thursday. She went out with her work girlfriends that night. On Friday she celebrated with my dad and their friends. Saturday night was for her and my dad. Sunday her mom made dinner and they had a family celebration. 

I loved this story. I loved the idea that my mom had this weekend in which she got to see all the people in her life, all those little groups that made up her world. It seemed wonderfully right to me, just the sort of way you should celebrate your birthday. I can't remember where I was in that story - I was 16 months old at the time - but for once, it didn't matter to me. I didn't take center stage in this story. This was purely about my mom. That's what I cared about. What did she wear, who was there, what did they eat? Did she have four birthday cakes? What went into this perfect celebration of life? I wanted all the details. 

For years, she wore an apron that said "29 Forever". She might have been two decades past that, but the apron lived on. I know my mother got older, but she never seemed to age. I don't mean that she aged well, because she did, despite the ravages of near-constant chemo. I mean that she never seemed old. Some people are old at 30, and some never truly seem to age. 

I asked her once how old she was in her head. At the time I was probably 37 and felt 25. She said her internal age did get older but it was never past her late 40s. She just felt young, and fun. We would both point out signs of her aging with shock. How could she ever look old? Impossible. 

She did get older, but not old enough. Not for me. I would take many more years with her. But if given my choice, one of those magic wishes that don't exist, one of those that move time or mess with order, I would travel to February 1976. To the weekend when my mom was the star of the story, alive and beautiful and young. I would just take it in, see a tiny part of the story she lived. See her last official birthday. 

I don't think it would make me miss her any less, or stop me from wishing for more birthdays with her. But it sounds like fun. Today, though I will not have that option. Instead, I will try to carry her with me. Her sense of humor, her love for our family, her ability to recognize strong smart women and make them her best friends. Those qualities and so many more. 

i carry your heart with me (i carry it in my heart) i am never without it

-ee cummings

My  mom and I not-celebrating her last birthday.  She would kill me for posting this photo. 

Kind of Like Fred Rodgers

I love my neighbors.

I think this all the time, but I rarely say it aloud.  I should say it more.  

I have really good neighbors.  Really nice, caring people who act in a friendly way. Even the ones I don't know well or see often are neighborly.  Sometimes we gather because a hawk looks hurt and we are all concerned; sometimes it's to shake our heads at the teenagers who like to use our street as a by-way to their party place by the river; sometimes it's at a social event some other neighbor has thrown.

Two of my neighbors are good friends of ours. Most of our time spent together is organic, occurring naturally as our kids play together or we just head over to one of our houses to have a glass of wine and a chat.  We rarely schedule activities, except in times of snowstorms, hurricanes, and other natural disasters, and then it's just to confirm who bought the wine and who bought the cheese. I think that says something about people - who are you picking to play cards with when the winds howl and you pray your trees don't fall on their house.  I love these people dearly and I think it a lot, but I don't say it enough. I'm lucky with them. We are lucky.

My neighborhood at large is pretty special, too. This is the kind of neighborhood that has a yearly Halloween party and parade, the sort of place where you end up talking to friends in the middle of trick or treating without worrying about where your kids went because the parent up ahead has your kids with her.  I could tell you all kinds of stories about how the people come together for good and bad events, but instead I will just say: it has a book club. This neighborhood has a book club.  I mean, if you are going to judge a place, judge it by its love of books.

The women who live here have no real reason to know me and care about me - my kid doesn't go to school with their kids, I don't socialize in that way, and frankly, I'm not super friendly - but they do.  When my mom died, they showed up with food.  They have sent cards, gifts, and meals for me during this time.  They check in with me, ask me if I need anything, and mean it.

I ascribe my entry into this community to my aforementioned neighbor and good friend.  She is one of those people that can talk to anyone, anytime, in any place.  She's excellent at making connections between people - she literally does that "introduce people with thoughtful details" trick.  I almost feel like our nation is wasting her talents - surely she could be brokering peace somewhere.  

She walks in and talk to everyone.  I tend to smile vacantly and try not to make eye contact because I am overcome with shyness at these large gatherings with 50 people that all know and see each other regularly.  The mass amount of people is so intimidating.  There is something about walking into a place where everyone knows each other better than you do that just tweaks my insecurities.  Nick and Emily are on the same footing but he just grabs a beer and starts talking to people and she runs off and plays - and there I am, hoping someone I know walks by.

But then something amazing happens.  People walk up and talk to me. They ask how I am.  They know my story - which is frankly a bit of a relief, because it's never fun if someone finds out you had cancer recently in the middle of a social chitchat - so it saves me all this awkwardness.  They are all predisposed to liking me, even if I am standoffish and unsocial and can't remember how old their children are. 

I was puzzling over this recently until it dawned on me.  First, these are seriously nice people in this area I live in.  Two, it's my friend. She speaks well of me, and so they look at me and see something good. 

What a gift that is, to have a friend who speaks well of you. This says a lot more about my friend than it does about me.  And with the kindness my neighbors show, their interest in me, that too says much more about their character than mine. Every single time I make my way through lawns and around corners from a neighborhood gathering, I think two things:

Well, you should stop being scared of this.

and

I have the best neighbors.  

Ready for the storm

Like Sunshine and Rain

It's six weeks today since my bilateral mastectomy. On one hand, it feels like it went by so fast.  On the other, I can't believe I am still dealing with this.

Lots of good news - I had an excellent time with my friends in Florida, and felt, for the first time, normal.  I felt like a normal person all the time.  Not who I was before  - I will never be who I was before - but like me.  Good enough.  I walked - not ran - the 5k, and it was super fun.  I felt great about it.

I have been feeling good in general, so I started back to work this week.  I learned I do not know the meaning of "ease in".  Nope, it was all or nothing apparently.  In some ways, it feels like I never left.

Also in good news this week, a huge team of oncologists discussed my case and determined the risks I would incur from chemotherapy would outweigh the possible benefits.  This is a relief to me, because I don't want to suffer.  Not going to lie - I really, really did not want to go through that.  There were a few options, some being more attractive than others - cocktails of drugs, other surgeries, etc. The option they picked for me and that I agreed to try was to take an estrogen blocking drug.  They would like me to do this for years.  5 years, probably 10, maybe 15.  We will see how it goes for a month.  Let me make this clear - I am not refusing medical care or going against advice.  I'm simply following the usual protocol, which is to take it for a month and evaluate.

In bad news, I have spent the last day or so in pain from an ongoing procedure that comes with the reconstruction.  It's so uncomfortable I am actually wishing I could take narcotics.  This, from the woman who refuses Advil for headaches and used Tylenol after her double mastectomy.  

A friend recently commented on my version of manageable versus what she thought of as manageable.  It made me smile - I did think a double mastectomy and months of reconstruction was reasonable. Now I know it's huge. I would not change my decision, I am very happy with it.  But it's still huge. Even though this is early stage, "easy" cancer, it still sucks.  I wish I had a more eloquent and elegant way of phrasing that, but I don't.  Cancer sucks.  Some go through more than others, but it all sucks.  

I hope that not one other person ever feels the need to quantify or qualify their experience with this, or any other disease.  I catch myself doing that all the time.  Yet I am encouraged to do so by people who like to remind me how much worse it could be.  I know how much worse it could be.  I saw it up close.

When I got the news about not needing chemo, I was at first happy and then deeply sad. For 18 years, I have been a bearer of bad news about cancer.  My mom's initial diagnosis, her second diagnosis, her problems with reconstruction, her stage 4 diagnosis.  All the scans for the 8 years after that. We had very very few moments of good news about cancer. I made a lot of phone calls that ended with tears.  And here I had good news, and I didn't know how to tell it.  I was happy but it was a loaded happy.  It was a little joy with a whole lot of sadness.

I wish this was news my mom would have gotten.  Or my aunt.  Or anyone else with stage 4 cancer that I have known and loved.  So many women and men who do not have it easy, and so many who should never be told they do.  

Let's just take this good news, be grateful for it, and hold in our hearts all the people we have known and loved who got different news.  May they be at peace. May you be at peace in your heart. May the world one day be at peace.

Back to Life

A sign that hang on my bedroom wall

Although the double mastectomy was much much better than I expected it to be, it was still hard. Really hard. Somewhere around day 10 I hit this slump - I didn't want to see people, look at posts, or texts, or anything. I felt isolated. I felt, probably, some of the grief this surgery can bring. 

Then I got my surgical drains out and I started to feel like a person again. I went to Christmas Eve and Christmas Day celebrations. I started to walk, slowly, in the local parks. I could wear a bra that wasn't from the hospital.  I could put shirts over my head. 

Recovery is defined as "the return to a normal or healthy condition".  

I knew I was feeling normal when I cared about the news again. When I felt righteous indignation. When I could go and sit in a movie theater and walk out of there making connections between what I saw on screen and how we treat people we perceive as different from us. 

At 3.5 weeks post surgery, I can drive again. I can open doors - not all of them - but ones that aren't too heavy. I can make simple meals and do simple household things. I can do a lot more than I can't. 

I still have to be careful not to lift heavy things, or push myself too far. I would have one great, active day and be totally exhausted from it the next. I've skipped parties and swim meets and all sorts of things just to rest. 

So it's a treat when I take my kid to swim practice and have coffee with a friend. Or run an errand that doesn't relate to the diagnosis that has taken over my life since October. Or when I do things two days in a row.  It's been great to spend so much time with my husband and my daughter, but my life is filled with lots of people, and I missed that.

The other night, my grad school friends came over, sort of a holiday celebration. I was very nervous about this going in. What would I be able to do? What if I couldn't handle it? Was even going to be able to have a non-medically centered conversation? I shouldn't have worried at all. Everyone brought food, helped set up and clean up, and acted exactly like themselves. It was like...being normal. Totally unremarkable but yet I was so grateful for it. It felt like I'd taken a week's vacation. 

That's how good friends make me feel, like I've been away relaxing. A twenty minute phone call from my neighbor can make me laugh and relax enough that it's equivalent to a massage. My friend calling from the airport before she leaves for a business trip buoys me for the day. Even sorting through the tricky stuff with a woman who is like a sister to me feels good. 

Friends are a huge part of my self-care. 

So for the next step in my healing, I am going to see a group of woman I love dearly. We have spent the last few years doing half marathons, and this year four of them are doing a particularly challenging set of races. On Thursday, they will run a 5k, on Friday a 10k, on Saturday a half marathon, and on Sunday a full marathon. I couldn't be prouder of them for this insanity. Three of us will be in the cheering section, handing out mid race snacks and holding up signs.

Before I was diagnosed, my plan was to complete the 5k and 10k with them. Once I knew the dates of my surgery, I asked both surgeons if I could still go on the trip. Even just to sit there. These women have supported me through everything for the last seven years, and I wanted to be there with them, even if I couldn't do the races. Both surgeons encouraged me to go, and my breast surgeon in particular understood the significance for me. She told me I would get on that plane, that I would survive this and be able to celebrate and heal with my friends.  She said the trip was part of my recovery plan.

So tonight I will get on a plane and fly south. I will get to hug my girlfriends and see their beautiful faces. I will get laugh with them and probably cry a little too. I will get to cheer them on and be there. Just soaking up the way that good friends make you feel. Loved. Whole. Healed.

Looking Back

One of the very first things I did in 2014 was a run.  I was training for back to back half marathons, so before heading to a yearly party, I did a nice run around Thompson Park.  I wanted to end this year the same way.  Today my speed was slower and the distance was only a mile and a half. But the intention was the same.  I went out in the crisp cold air, to a local park, and took a stroll with a friend. (And yes, I am totally medically cleared to snail pace it for a few miles). 

This time last year, I was on winter break from grad school.  I was preparing for an epic 10 day, two coast, two half marathon trip with 5 of the best friends I've ever had.  We flew to Orlando, did a half, volunteered at a full, and then flew to Los Angeles and did another half.  It was crazy fun, emphasis perhaps on the crazy.

Once back home, I was focused on finding a new internship, finishing my yearlong project, and getting the most out of my last semester in grad school. I never could have imagined what 2014 had in store for me.  I knew about some things, but only the vague outlines. I hoped, of course, that I would get good grades, learn a lot, and graduate.  I did. I am happy every single day that I went to Monmouth University for my Masters in Social Work.  My education was a privilege, and I loved every second of it - even the ones in the library writing papers late into the night. I hoped I would be able to work where I interned, and I was hired there.  I prayed to pass my LSW exam, and I did.  I worked on my application to become a licensed social worker, and that goal was met, too.  

I knew I would travel to London, even though it seemed so far away, but I didn't know that my first solo trip in years would prove to be so wonderful.  I am so proud of myself for taking that trip.  I knew I would spend time with family and friends, see my daughter learn to surf, and take a little trip with my family, but of course you can never know the joy of those things beforehand.

I had no idea that I would come to work where I am now, but I feel like that was another gift 2014 gave me.  My health was a priority for me this year, and without that goal setting I never would have made those doctor appointments, been delighted with their outcome, and gone to get that mammogram.  

I'm glad I got that mammogram.

Please don't misunderstand me.  Cancer is NOT a gift.  Nor is it "like a blessing in disguise", as one person said to me.  I very nicely replied, "It's not at all like a blessing".  If you want to frame your illness that way, I respect that, but that is not how I frame mine.

I'm not glad I got cancer. I am happy that I made myself and my health a priority and that I made the subsequent healthcare choices that I did. I took care of myself, so that I could do the work I am meant to do.  I spent two years working towards a degree, and probably at least two before that talking myself into applying to school. It was a lot of sacrifice, for my entire family, and it was not easy. When I first got diagnosed, I was so pissed because I had worked so hard to be where I was and it felt like I was being derailed.

But my whole life was set up with such a support network -  family, friends, work - that I stopped thinking that pretty fast.  I could go to work and make a difference, even if it was just to my coworkers.  I'm not sure I could have continued to work and feel useful without the meaning behind the work I do.  Doing what you love matters. (If you are feeling generous, and want to donate to the non-profit agency I work for, I will link to them at the end of the post). 

I could spend all day listing all the good things about this year - or just the last few months. My kid made high honor roll.  I got to see my cousins for Thanksgiving.  We didn't have to think about food or even house cleaning once I came home from the hospital.  I can confidently say that we got through the last three weeks since my surgery on goodwill and caring. The love and support from my family and friends is priceless.

When I think about 2014 as a whole, I see all those good things and more. I see laughter in tense moments, help showing up when it was needed, someone saying "I got you" and meaning it.  I see kindness and love and fun.  I see the bad things, too - it's not always a good moment, day, week, month -  but the good stuff just outshines them. So I am not glad this year is over - I am glad I got to live it.

Happy New Year, and a huge thank you for being one of the good things in my 2014.

Click here to donate to Long Branch Concordance Family Success Center

Deep breath

Today was my follow up appointment with my breast surgeon. She's called a surgical oncologist, and the ones who give you chemo are called medical oncologist. This, I never knew. 

I'm feeling better and I'm kind of finding medical appointments tiresome right now. I have seen a lot of doctors in the last few weeks and I relish the break. Also, I am really really tired of people looking at my breasts, in whatever form. It gets old fast. 

So it was with trepidation that I headed to this latest appointment. I didn't want to put on a gown that opens to the front and I didn't want to be examined. And I didn't want bad news. 

As it turns out, I got no news. 

We waited for a bit. I tried to finish a Poirot mystery. I complained about being bored. Finally my surgeon came in. We chatted. The end result is that I am apparently delightful and she's bummed she won't see me regularly.  

I don't feel very delightful. 

Here's what I do know. I am healing beautifully. (Their words, not mine.) My pathology came back and my cancer did not spread. I will most likely (aka definitely) be recommended to take Tamoxifen. They don't have the results from my Oncotype yet. Once they have those, I will meet with a medical oncologist and discuss my options. That appointment is in a few weeks. 

How do I feel about it? Well, I'm tired. I'm crabby. I am firmly in the "I would rather know and deal with it" camp than any other. I really don't feel like handling this gracefully or with strength, and God knows I don't want to spend the Christmas holidays discussing it, and Lord, I am sick of people looking at me sympathetically. 

Yet I am reminded, right now in this moment of a mini tantrum, of one of my favorite lyrics. It's from a song by the Indigo Girls and it's called "Closer to Fine". 

"The less I seek my source for some definitive, the closer I am to fine."

I'm going to learn, again, to be okay with the unknown. The uncertainty. The space most of us live in, whether we acknowledge it or not. It's sacred, that space. It's real. It's not always pretty and there are no neat bows, and that's okay. I cannot wrap this up, in a package, and put it under the tree. There is no clean ending to my story, mere days before Christmas.  

Instead it's gloriously uncertain and messy and open ended and ongoing. As it turns out, I can live with that. 

Thank you for all the ways in which you sent love and hope to me. 

One Week Later

It's been one week since my bilateral mastectomy.  It seems absolutely unbelievable that a week has passed.  By all accounts, I am an excellent patient.  I am the rock star of patients.  I am amazing.

I don't feel amazing.

While I was in the hospital, no less than 25 medical professionals told me I looked amazing. In the recovery room, where you literally come back to consciousness after having 5 hour surgery and the like, my nurse was calling other nurses over to point out how amazing I looked.  This sounds so bizarre as I type it up, but I swear it's true.  Staff would come in, for one reason or another, and do a double take when they saw me.  On Friday, my surgeon told me that people were stopping her and asking if I had really been in surgery the day before.  Even today, my visiting nurse told me I looked amazing and clearly didn't need more nursing care.

I don't have a definite reason for this miracle patient status, except that it wasn't as bad as I thought it would be.  Please don't get me wrong.  This sucks.  I mean, it sucks.  I hate it.  I hate that I had to go through it, I hate that I am in recovery, I hate how it has disrupted my life, my husband's life, and my daughter's life.  But I thought it would be way, way worse. 

My first thought when I woke up in recovery was that it wasn't as bad as I thought it would be. I wanted water, my glasses, and lip balm, pretty much in that order.  I was hooked up to a little pain on command button, and given lots of ice chips.  I hung out there with my nice nurse and her coworkers, and eventually a nice man took me to a private room where I met up with Nick.

I was in the hospital for one night, and then I went home.  I learned that I truly do not have a good relationship with narcotics.  First, I did not hit my little pain button a lot, so I stayed under medicated, and in more pain, than I needed to be. By the next morning, they had taken me off the IV and given me oral pain pills.  That's when I had my first allergic reaction to the happy pain pills.  So, no magical trippy dreams for me - just plain old extra strength Tylenol.  

I sleep a lot, now that I am home.  I eat meals. I take naps.  I am kind of like a cat.  I find it hard to concentrate on conversations that last too long, probably because of the general tiredness and muscle relaxers. None of that is bad, per se.  I very gratefully eat the food our friends drop off, but I sometimes can't remember who dropped off what.  All my energy is focused on healing, and resting, and trying to get better so I can have my life back.

Tomorrow I should get my four surgical drains out.  Monday I find out if I need chemo.  If you can, I would love your prayers for my recovery and prayers for good news on the chemo (I really would love to bypass that experience).  I will update when I can - I can't wait to be my snarky self again.

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.