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.