Roy Moore & Me

There so much I want to say, out loud.

Things that I was forbidden to say as a child. It was a sign of the times that my mother and grandmother expressly told me to never share my story with anyone. It’s not that you did anything wrong, they said, you didn’t, they said, but all the same, don’t talk about what happened, even to us.

I know what they were doing – trying to protect me – but it had the opposite effect, it made me feel worse. More broken, smaller, powerless. I felt isolated and alone in my own family.

Like anything on or in us that’s sick, it won’t go away by pretending it’s not there. It gets worse. And not just metaphorically, but physically. An accidental landmark study called, The Adverse Childhood Experiences (ACE)Study, done from 1995-1997 identified the link between childhood trauma and disease in the body. 

This study determined that childhood trauma effects the body in 3 ways:

• Self-medicating -  smoking, overeating, drinking, drugs and sex offer immediate relief, but carry with them long-term risks
  
  
•  Unrelieved Stress – chronic, major, unrelieved stress on certain areas of the brain that control our immune systems and inflammatory responses play a major role in presentation of diseases
  
  
• DNA Changes – this is perhaps the most surprising: genes can change throughout the lifecycle, and childhood trauma wakes up and alters markers in your genes that cause diseases

When I was going through treatment for cancer a wise friend said, “Cancer is anger manifested as disease,” and that was something I spent a long time reflecting on. After discovering this study, that statement feels even truer. Or rather, it feels true that we are what we carry, wins and wounds.

There’s so much I want to say out loud, so I guess I’ll start with this: there’s a crack in everything, its how the light gets in.

More to follow.

Then & Now

For anyone out there reading this who's wondering to themselves if there's life after cancer or cancer treatment, have a look:

Then - May 10, 2014

Last day of chemo celebration.

Now - May 15, 2015

On my wedding day with my loves. 

One year after my final chemo treatment I feel like myself again. Better then my old self, maybe. Physically, I feel stronger, less tired and fragile. I feel vibrant.



Emotionally and spiritually, I feel more peace, love and warmth then I've ever felt in my life. Everyday I feel blessed by my family, friends and coworkers. I feel lucky to be alive and healthy and I love the life I've created. I feel this gratitude when I make my bed, go to work, play legos and snuggle on the couch.



So, for those of you wondering if you'll ever get back to 'normal', you can and you will.



Muah.

Crappy Disease, Great Reporting

Check out this awesome series produced by WNYC and NPR called Living With Cancer. Definitely worth a listen.

I also want to add that over the past couple weeks I've been connecting with other women going though this experience, and its been such a blessing to serve them in any way that I can. For me, helping others through this experience eases the pain of having been though it myself.

Lesson here: getting through this life takes a village.

Day 1

I've put it off as long as I could. But the thought of a recurrence has been nagging me. So, I present to you a photo of my breakfast. Or, the side item which will accompany my breakfast...for the next 5 years. 

Prayers that this is uneventful and side effect free. 

HNY 2015!

So long 2014 ~

Hello New Year!

2015: embracing this path, in all its forms. Here's the same for you this year!

Lately

As of late I've been so critical of myself. Why you ask? Because I no longer look like this:

Bryan and I were going through our old photos this weekend and when I saw that beautiful woman, I cried, a lot. I wanted to run away and hide in a cave. I felt sorry for myself. Like everything's been taken and changed by this horrible disease. I don't even recognize the woman I see in the mirror. People I worked with 2 years ago don't recognize me. None of my clothes fit. I don't look like the woman my boyfriend fell in love with....and on and on.

As shallow as this may seem to you, it’s been a huge adjustment for me. Why? Because I went from that to this in 3 months:

When humans age, they have time, lots of time, to accept the gradual changes that occur within their bodies and minds. Cancer changes that equation though. Overnight it robs you of that element that allows you to continually evolve into your new and ever-changing body and spirit

My body has endured so much in this past year. My strong body. My body that now has extra curves, pounds and wrinkles and not nearly enough hair, breasts or estrogen.

When I look this photo I get back a little of what cancer took: the sense of time passing. And maybe, if I look long enough I can figure out how to be ok with where I am today. Alive, feeling well and doing the best I can to care for my body.

Loosing the battle

Against the deliciousnes

One Year Ago Today...

…I was diagnosed with Breast Cancer.

The Details: I had multi-focal disease in my right breast (meaning I had three tumors in the same quadrant of the breast), grade 2 cancer cells, lymph involvement (making me a Stage 2A), estrogen/progesterone positive, HER2 negative, BRCA 1 and 2 negative.

The Treatment: After my initial diagnosis I went through lots of tests (and lots of BS) to get to the treatment phase. Eventually though, I had neoadjuvant chemo (for 5 months, shutter), and a unilateral mastectomy with sentinel node biopsy.  

The Result: I had a complete pathological response to chemotherapy. Meaning, on a cellular level, there is no cancer left. This type of response is somewhat rare which I didn’t realize until recently. It’s very good news actually because studies show that I have a greater chance of “event-free” survival. This is the best outcome I could hope for really.

The Physical Side Effects: Are dreadful and I include my hair in this assessment. Have I mentioned the 18 pounds I gained? If you want an illness where weight loss is a side effect, breast cancer ain’t it.

The Other Side Effects: Cancer effects the whole person: physically, mentally and emotionally. Since I was diagnosed one year ago, I’ve been mindful of caring for my mental and emotional selves. I’ve made big changes and hard decisions, all of which have contributed to my physical healing. It’s all connected, in my experience. I saw healing from cancer as a way to heal every area in my life where I felt imbalanced. I didn’t plan on healing that way, but it’s the only way I knew how to do it.

Today: Before the end of this year, I will complete my reconstruction surgery and have silicone implants on both sides. I take aromatase inhibitors daily. I get Reiki when I feel that I need it, about every 6 weeks.

I rarely drink alcohol and limit my intake of sugar. Don’t worry though, I’ll never be that a-hole at your party who won’t eat your birthday cake with you, I’m totally sharing your cake. But, overall, I eat very well.  I drink a green smoothie daily (fav right now: water, plain fat-free Greek yogurt, 3 cups spinach, pear) I cook at home every day using whole foods and I bring my lunch using same said foods.

I also think about exercising 30 minutes a day, like I should. Ok, I’m still working on this one.  I found a solution, but a few more things need to happen prior to implementation of my program. It will happen though.

My new mantra? Progress, not perfection. I can tell you that over these last 12 months, my life has progressed into a new stratosphere. It is not perfect and I love it, even in spite of my old-lady hairdo.

 

Easier / Not Easier

Getting Easier - having warm cookies delivered to my house at 9PM, spending time with colorful freshwater fish

Not Getting Easier - not having a breast, no longer having periods

Staying the Same -  keeping butter out of the jelly jar

Six words

Six-Word Cancer Memoir - In Two Parts

I.          There are no guarantees in life.

II.          Whatever happens, love yourself, without reservation.

Survivor

If only I were referring to that TV show.

Early on in my treatment I went to a support group at the cancer center. It’s a spiritual support group designed to help women effected by cancer release some of the strong feelings that accompany this illness. You can cry, shout, sing, kvetch, do pretty much anything within reason to express whatever you need to.

The first time I went I was really surprised to discover that women who had been healthy for over a year were still attending the group. There I was, bald, nauseous, and pissed that I had to go through cancer. Right in the thick of my treatment, I sat next to these women and listened to their stories.

Honestly, I couldn’t relate. From where I was sitting, they had what I most wanted: hair. They also had a clean bill of health. And yet, they were having trouble adjusting. Trouble dealing with the residual feelings cancer left them with when it vacated their bodies.

The thing I heard the most was anger, followed by confusion. The kind you feel when you wake up from having napped too long on a summer afternoon. You look at the clock and it says 6:30, and you panic, thinking you’re late for work. It takes a couple minutes to sink in that evening has come, and you didn’t get the notice.

Not having cancer is a little like that. You know you’re well; your cells are working, humming like bees, and yet, there is worry, because an essential part of you didn’t get the memo that you’re cancer free. In other words, in spite of the fact that I look healthy, I don't feel it. I  still feel very much like I'm recovering from something big. Like my mind is just now sorting out all details of what my body has been through this past year.

In playing catch up, I wonder: How long will I live? That question is the scary one. Recently, I was talking with a woman, maybe 75 years old, maybe older, I’m not sure. She was old though. I could tell she was old because her hands were gnarled with bulbous knuckles. Looking at her hands, I felt a sadness wash over me. Followed immediately by an acute jealousy, she had something I might not get: a long life. Then, I felt sad again. There are no guarantees in this life for any of us, but, having been though cancer, I feel acutely aware of this fact, and it scares me sometimes.

Beyond the worry and possibility of a shorted lifespan there are other unknowns, specifically about my body: What is this body now? How does it feel? What does it need the most?

My body is very different than it was a year ago. There are scars. Too many, I think. Parts are missing, big parts. Important parts. I’m heavier to. Medications that cured me also made me gain weight, kind of a lot of it. On top of that, I ate whatever I wanted. When you’re in treatment for cancer, and feel so shitty, sometimes simple things, like a chocolate croissant and a nap, are the best part of your day. So I have curves now, the first one’s ever.

Also, what can my body do now? There are risks, since lymph nodes have been removed. I could contract swelling in my arm that will never go away. At first I thought about that every day. Now, it hardly comes up, but later in the fall when approximately 3.5 million leaves drop from the trees and onto my lawn, I can rake only for a little while at a time. Because, I like my arm the way it is now.

Raking in short stints isn’t so bad, not something that really hits home. Menopause though? That hits right where it hurts. Did I mention am 41 years old? The old ladies weren’t kidding about hot flashes. Those suck. Cuddling is challenging at times because of them. My body runs hot, and having a little critter on my lap, makes me break out in a sweat. There are other fun and exciting things that happen to the female body during menopause. I will spare you the details and just say, between that and the anti-cancer drugs I take, it will be a miracle if I have any bones left by the time I’m 65.

The chemo induced neuropathy is still with me as well. Its mild, but it’s still kicking around. I am still healing from the chemo, its clear. The damage from those drugs was system-wide, but slowly, I’m healing. I can tell when I peddle my bike as hard and as fast as I can. I feel energized, joyful even, because I can move fast. I can tell when I’m dancing with Bryan, the Rumba never felt so good. The foxtrot on the other hand, is a brutal dance. Either way though, I’m electric and excited at joining the human race again.

I know that it has to be at my pace. I have to meet myself where I’m at. I do what I can to listen to my body. Push myself, just a little, to get my body moving. Nourish when needed and sleep when tired. Hugs are good to, the best actually.

Knowing all this, I’m taking my cancer-free self, back to the support group. I’m going to sit there, with my head full of hair, and kvetch, complain and most likely cry some. I’ll keep going to the group to, until that deep down part of me finally gets the cancer-free memo.

Until I know what healthy means for me as my body is now, after having been on this long journey.

Thanks but...

When I was pregnant with Aidan I wanted to know as much as I could about pregnancy, labor and birth, so I decided to take a lamaze class.

The teacher, Harriet, was about 75 years old. She was 5 feet tall with jet black hair. In addition to knowing lamaze backward and forward Harriet also had lots of interesting stories about how birth used to be in the city.

She told us about illegal home births in Manhattan and in the outer boroughs where groups of women would gather at the laboring woman's home and all help the baby earthside. She shared with glee the first time a man (gasp!) was in the laboring room with his wife. He handcuffed himself to his wife's bed and refused to give up the key. And then there was that time when they all protested in front of city hall to advocate for a birthing center in Manhattan.

All this went down in the late 60's and early 70's and from what I could gather these acts of civil disobedience brought about a sea-change in maternity care in the city. What started them down this radical path? It was for many reasons, but I think it was primarily because western medicine had overstepped its bounds with regards to birthing.

As I have shared before on this blog, having cancer, in so many ways, is like being pregnant and just as those birth radicals observed and responded to the over-medicalization of birth, so have I seen the tendency toward the over-treatment of cancer, and I am responding.

Don't get me wrong, cancer can kill you, so its best to make sure to treat it until it's gone but continuing to treat after the cancer has been cured? I'm not convinced. Which is why I flew all the way to Philadelphia to speak with Dr. Lawrence Solin after I found an article he wrote about this very topic.

Dr. Solin, it turns out, was the perfect person to see. He told me that every opinion could be supported with the current research which says, yes, no and maybe, someone should receive radiation after a mastectomy, depending on the specifics of their situation.

After he said this he want to on talk to me about my cancer and my treatment and about what makes my situation a-typical: I had chemotherapy first.

Rather than go though the details of all the relevant studies and the specifics about my cancer and course of treatment like Dr. Solin did for me, I share with you an excerpt from the paper which helped me make my decision about radiation:

"Similarly, in 102 patients undergoing mastectomy with clinically positive nodes before neoadjuvant chemotherapy and pathologically negative nodes afterward, the risk of chest wall and regional nodal recurrence was between 0% and 10.8%. These locoregional recurrence rates fit into a low-risk category of patients who are unlikely to experience improved overall survival from radiotherapy."

Translation into English: when a gal with Stage 2 cancer has chemo first and it cures her cancer, like completely cures it, like on a cellular level, her risk of recurrence is between 0% and 10.8% and radiation can't make it any lower, because there is nothing lower than zero.

Whereas the short and long-term side-effects from radiation are pretty significant and the risk of getting at least some of those side-effects is pretty high, way higher than 10.8%.

So, thanks Radiation Oncologist, but, I think I'll pass and stick to getting my radiation the old fashioned ways: from space or from a tanning bed. 

What do you think?

News flash: headed to PA today via NYC to meet up with a Dr who specializes in answering questions about Radiation that I have. Specifically, do I need it? Like, really need it? 

The Drs here can't come to a consensus and since I'm not a Dr I need another perspective. 

So, I called an audible, scored a free flight, and am in route to the East coast.

Fingers crossed that I can get some solid info because no matter how much I like my local Dr, I'm not undergoing anything based on someone's spidey sense. Just sayin.

The Morning After

Yesterday afternoon I had my surgery. One doctor removed my breast and the other partially rebuilt it again.

It all went very smoothly, so I am told.

This morning I'm in pain,  but hungry and no nausea, which is progress.

More medical facts when I'm up for it. Just wanted to let you all know I am well.

Love and hugs all around.

One Hour at a Time

"...first you decide what you gotta do, then you go out and do it, and maybe the most that we can do is just to see each other through it..."

- Ani DiFranco


This one goes out to my Tuesday Women's group. You have been holding me through this. Whenever I feel alone in this, I hear this song and you all are right there with me. For this I am so grateful.

Let's talk a little more about my breasts

When you're diagnosed with breast cancer what you don't realize is how much time you'll spend talking about your breasts. I have, in fact, spent so much time talking about my breasts that its a subject I'm rather tired of. 

Today however I will have to spend just a little more time on this topic. This may be the most important conversation that I'll have because I'm seeing a woman who will, hopefully, reconstruct my body after I've had my breast removed next week.

You know what they say, when life gives you lemons, made lemonade. Or, you know, grapefruit-ade, or melon-ade. Or whatever. 

That Funny Feeling

Peripheral Neuropathy = my internal alarm clock alerting me that I haven’t rested enough. Good times.

Slow and Low

                                     

On more than one occasion I've found myself realizing I'm done with chemo. Then, right after that, I realize I'm smiling. Then after that, I realize I need a nap.

Mainly because when you finish chemo it doesn't finish with you. The side effects may last up to a year. 

Yea, you read that right, one year. The nastier ones last much longer but hopefully that doesn't apply for me.

So friends, I'm taking it easy and will be for a while.

 In other words, if you can't find me, I'm outside laying on my lounge chair with my priorities straight. 

Up and up

I'm feeling better and better everyday. Taking good care and preparing myself for surgery, mentally and physically.

Prayers and good vibes welcomed as I move through these next couple weeks.

Post-Chemo Party

Want to have a fun party? Take chemo for 6 months and then have your last treatment. 

Afterward, you'll feel like dancing from a rooftop and sitting next to every woman at the table all at the same time. Consume mass amounts of special sushi, pork buns and Korean BBQ wings. Sprinkle in some kale salad for good measure. 

Skip desert and bring all the ladies back to your place. Drinks, loud laughter and hanging by the fire pit will be sweeter than anything served on a plate.

Women Gathering - Anju Edition

Very unexpectedly, the women who supported you every step of the way on this shitty journey will gift you with special things to commemorate this milestone. You never understood the significance of planting a tree for these or other occasions. But suddenly, you get it and you love it.

Am I old enough to have a tree? Yes, yes I am

Art meets love meets your breast cancer in this beautiful piece by the amazingly talented Erin. She will give you this and you'll feel so lucky its yours. Finally you get to put your hands all over her work because it calls out to be touched. The texture of the painted surfaces and the naked surfaces feel beautiful. You blush a little when you touch it, given its shape.

To see more of this beautiful work, go here

You won't forget to celebrate with the person who found your cancer, subsequently saving your life. The person who is there for you when your cuddle-o-meter is alarmingly low. You know that this value doesn't show up on your weekly labs when you go for treatment, but you do know that when these numbers get low, look out.

So you'll put on the dress he bought for you and wait for him to get ready to.

Then, just like that, you'll be eating oysters by candle light. Holding hands and admiring the views. In that moment, you're not really celebrating anything at all. And at the same time you're celebrating everything. 

No more chemo, start of summer, patio refurb, generally feeling blissed

Then, when you wake up the next day, you'll feel so blessed. You know that even though you have many more milestones to go before you leave this particular path, life is good where you are. Right now your life is everything you have always wanted. Plus more. 

Indeed it is