The woods

Li Fraumeni syndrome is a little bitch. It never loosens its grip. It's sneaky. It's a deep, dark woods. And you're never out. Ever.

On the heels of celebrating 7 years since my breast cancer diagnosis, my colonoscopy revealed they found a polyp (for the first time), which they removed. It wasn't benign. It was pre cancer. Pre. Cancer. I just had a colonoscopy two years ago. I'm only 33. I don't eat meat! I exercise! Oh wait, IT DOESN'T MATTER. Because Li Fraumeni syndrome.

The polyp is removed. If it hadn't been, it would have eventually developed into cancer. I'm grateful for my screenings and for my doctors taking me seriously. 

But this is my life. This is my every day. I'm mad and I'm shocked and it will take me some time to process that I had a precancerous polyp in my colon. Li Fraumeni syndrome is no joke. You're never out of the woods. This mutation doesn't skip a beat. In two years a precancerous polyp developed. In TWO years. I try not to compare myself to the general public who doesn't get colonoscopy screenings until they are age 50, and then gets them every ten years. I forget that's not my life. Every single screening matters, it turns out. Even ones you think are pointless. If you miss a screening you could miss a cancer. 

Never out of the woods. You blink and you could literally miss early cancer cells. This is #LivingLFS. 

I have PTSD

This post took a few days to write, and I second, and third-guessed myself posting it. But I want people to know. This is my truth, right here, right in this moment. 

I used to just think I had crippling anxiety. And I do. Sometimes I cry. I cry a lot. Usually it's because of fear of the unknown, or fear of the known: my mind replays terrible things that have happened to myself or loved ones, or I picture, vividly, terrible things happening. Over and over again. My mind spirals from one bad event to the next, and then the potential perceived outcome of said imaginary event. This happens every day, beyond my control, until I am left with thoughts of utter despair. Moments of my days are blocked out by these thoughts. These thoughts take me away from the present. 

You probably know I have anxiety and depression. I've written about it for years. But you probably didn't know it was like this.

I thought this was normal anxiety. I thought I was just "stuck" with my treatments. I thought I'm just still in the thick of it. But I was wrong. Well, not wrong completely. I do have depression and I do have generalized anxiety disorder, both of which I have been treating since 2011 with therapy (talk and CBT) and medication. 

But I also have something more. I have PTSD. 

As if anxiety and depression weren't enough. As if chronic pain wasn't enough. But they all go together. And maybe understanding this piece of the puzzle will help us put back together the puzzle. Because sometimes I feel like so many pieces are lost. My most amazing attributes feel buried by my fear and anxiety. I want to bring them back. I am better than this. I am not this disease. I didn't choose this. 

I'm not going to go into detail about what my PTSD stems from. In my case it doesn't seem to be a particular life event. Some PTSD is caused by a particular traumatic moment. Some is caused by repeated exposure to traumatic moments. Some is a combination of the two. 

We could say it was the childhood Leukemia - because I have vivid memories of my treatment and being sick, even today, when that was 19 years ago. When I'm lying in bed at night I have random, sporadic memories of being sick. I can remember full conversations, my emotions during a particular moment, how I felt physically, all of it. 

We could say I have PTSD from being sick as a child. But then I got sick again at 26, with breast cancer. We could say my unresolved PTSD was only magnified by another cancer - numerous tests and surgeries, and again facing my own mortality. 

Then that was compounded by my diagnosis of Li Fraumeni Syndrome, knowing I have a genetic mutation that significantly increases my chances of getting cancer. So while the LFS explains the Leukemia and breast cancer, it adds another layer: a lifetime of screening and tests, and again, facing my own mortality. Something no 12, or 26, or 32-year-old should have to do. On the regular. Every day. 

And listen, just being in the cancer community is a trauma in itself. As a child I watched fellow child cancer patients die, and today, I watch my friends - friends I meet at Tour de Pink or YSC Summit - women my age, die. 

I have PTSD.

I hope to begin seeing a new specialist soon, one my psychiatrist is going to recommend. I've been functioning with PTSD, probably six or more years. When I really think back, I have had some of these symptoms for more than 10 years. Nothing is new. Nothing has changed. Just a diagnosis. A more pinpointed diagnosis. Maybe now, my vivid and disturbing memories, and the vivid and disturbing scenarios I invent in my mind, and constant fears, and being alert and on edge and hyper focused, and irritable, especially in the car and in large crowds, and my heightened reactions to the news can be better explained, or can be better managed. I hope we can put this puzzle back together. I want to be more than this. 

So much makes sense now.

I thought it was a variation of normal to shake uncontrollably whenever I go to my oncologist or breast surgeon's office. I thought it was a variation of normal to not sleep for a week following the Las Vegas shootings. I thought it was a variation of normal to feel heightened anxiety and constantly be on alert when traveling. I thought it was a variation of normal to not want to hear any TV shows with disturbing content, not even when I'm in the next room. While some of those things MAY be variations of normal when it comes to anxiety, these things were/are affecting my life. 

Listen, we all have worries. We all have fears. We all have anxieties. Many of us have faced unfathomable trauma. 

Did I flourish in the face of diversity? Yes. Did I make "Lemons out of lemonade"? Yes. Did I continue to live and thrive after cancer? Yes. I built a life for myself. A life of many rewards.
But the residual damage. Let's acknowledge it, and its role in my current mental health. THE RESIDUAL DAMAGE. The anxiety, the depression, the PTSD and the chronic pain. And that's just now. I can't even begin to know what late effects I'll have later on. We are just now learning about my memory loss from chemotherapy as a child. 

The anxiety, the depression, the PTSD and the chronic pain, which are all intertwined, affect how I live and breathe each second of each day. The choices I make. And the guilt. The survivors guilt from watching my friends die from the exact same diseases I had. And just the plain guilt. That despite being physically healthy and cancer-free and able-bodied, I'm not HAPPIER. Not enjoying life MORE. What is the right amount of happy and joy after cancer? Should it be more than before since now I've faced mortality twice? Or should it be less because now I've faced mortality twice?

I think for a while I found great strength in the knowledge of LFS, and that diagnosis forced me to live my life in a certain way: fearless and healthy. I carried on. I carried on hard and I carried on tough. But underneath my advocacy and running and bike rides there was residual damage. Maybe I ignored it? Or maybe I was happier then. Or maybe I'm still happy now but more aware of the residual damage.

I didn't ask for any of this. I didn't ask to become a hero or an inspiration. Don't get me wrong: when people tell me I'm strong, I believe them. I am strong. I know I have love in the world and a network of support. And I know people are listening to my story. But I didn't want this and I didn't have a choice. Sometimes I don't want to be strong. Sometimes it's exhausting. Actually, all the time it's exhausting. 

My leukemia from 19 years ago LIVES in my everyday, as does the breast cancer. My LFS affects everything, from what I eat and put on my body to the X-rays I have or don't have. 

Yes, I am able-bodied. I work out. I lift. I chase around a toddler and an energetic dog. But I'm in pain every day. And the pain is + appointments at the pain management clinic + physical therapy + chiropractic + missing work + anxiety over missing work + fear of inadequacy + not enough energy to work and also take care of the pain + be a mom + keep house + endless appointments with my psychiatrist + testing for memory problems and ADHD ..... It's all intertwined. It's all residual damage. All of this is a result of cancer. Both cancers. Or either cancer. 

It's pain. It's guilt. It's fear. It's feeling guilty that I'm fearful. It's feeling guilty that I'm not happier. It's endless appointments to manage the anxiety, depression, PTSD and LFS. It's endless. It's my life. I make the best of it. And I'm not faking it - I truly am happiest with my friends and family and making plans. But there's a layer of damage underneath. There has been damage done. I didn't come out unscathed. And that's the truth. I live, every day, with the residual damage. 

Today, this is my admission. I just found out I have PTSD, and as shocking as it is, so much makes sense to me now. I want to start putting the pieces back. I'm more than this. 

Thank you, as always, for your love and support. And as always, I carry on and continue to heal, whatever that looks like. 

How much more can we take?

FYI: I'm writing this post pissed off and on little sleep. And I don't have a censor today. SORRYNOTSORRY. 

Do you know how utterly exhausting it is to FEEL EVERYTHING? SO DEEPLY?

Many of you do. 

I've always felt everything - every emotion of every other person, especially people close to me, so deeply, to my core and my soul that it's made me sick. They say when you have children it's like wearing your heart outside of your body for the rest of your life. That's me, times a million, before Adele, and now with Adele, a million bajillion times more. I can actually feel my heart hurting from loving someone (Sean, Adele) so much. 

What happened in Las Vegas over the weekend has left me DEPLETED. Like so many of us. How much more can we, literally and figuratively, bleed?!

And I don't just mean how much more of this can we take before we make it HARDER TO GET GUNS IN THE UNITED STATES, and also, how much more of this can we take? Just how much more? How much more energy do we have? To endure this pain?

I don't have any connections to what happened in Las Vegas. But like so many Americans feel, that festival is ALL OF US. 

That festival represents all of us, in that this could happen, AND DOES, all over the United States. At schools, movie theaters, festivals. We're just people in the United States. Going to things and living life. And it has become so dangerous. So maddening. How much more can we take? 

I feel shredded. I didn't sleep at all last night. I learned what I needed to about the shooting, and tried to avoid the news after work and for the rest of the evening, binge-watching my DVR'd episodes of Younger. Trying to remove myself to find some peace. Because when you feel everything, all the time, you get depleted. My heart literally feels like it's been stabbed, my gut twisted. I feel so heavy, like it's such a burden to carry on the day, when something like this has happened. How do we get up, put on our shoes, care for our families, ourselves, and carry on the day? How many more times can we get up after we've fallen?

I don't have an answer. I don't have a solution. All I have is my feelings and I didn't know what else to do with them except put them here. Because it's become too much to bear. There are no words I could possibly type that could begin to describe how sickening what happened is. 

Please tell me I'm not the only one who feels shredded. To pieces.

L'Shana Tova

L'Shana Tova from our family to yours!

May your year be happy, healthy and sweet.

Summer 2017 highlights

We had a busy summer! Summer is my favorite season because it means we can be outside all of the time, from morning coffee on the front porch to after-dinner water play in the backyard.

Our summer was filled with:

• Play dates at the pool and park
• A weekend trip to the Poconos
• Picnics
• Running through the sprinkler
• Evening walks with Campbell
• Berry picking at Bee Tree Berry Farm
• Trips to the Arboretum
• Birthday parties
• BBQs
• ArtsFest and July 4th fun with friends and family
• Adele's first Soccer Shots
• Grange Fair
• Adele's first Spikes baseball game
• Popsicles and ice cream dates with friends
• Friends and family visiting from out of town
• Exploring new playgrounds
• And much more!

Here are just some of the highlights  from our amazing summer! 

Timelines

It took me six years of trying to heal after breast cancer to realize, that's not actually my goal.

I've been wanting to write a blog post for months now. MONTHS. But every time I sit down I am discouraged by my lack of energy. Or I am overwhelmed by the thoughts - the enormous thoughts - that swirl around me. So I'll start small. I'll start with one thing that's been on my mind. 

I'd been doing myself a grave disservice by saying, when referring to healing after breast cancer, that I'm "Still in pain.." or "still suffering from anxiety/depression.." or "still fear scans" or "still feel like I'm going to get cancer again." Or despite therapy, medication, physical therapy, cognitive behavioral therapy, "I never got better."

Guess what? That wasn't the goal. 

It's not that I've been lying to myself. It's not that therapy and medication and CBT and all my attempts to minimize my pain (pain management clinic, PT and exercise) have been for nothing. It's that, somewhere along the way, I expected to be "better" or "OK " or "healed" by now and became increasingly frustrated that I wasn't.

Excuse me? Who came up with the timeline that I would be "better" six years after breast cancer, or 20 years after Leukemia? Or despite seeing multiple doctors every few weeks and undergoing scans and tests and dealing with LFS, that I would "adapt to my new normal and just carry on.."

Who came up with that? (hint: it was me.)

I told myself as long as I was working, and volunteering, and piling on advocacy like a Jenga game - Tour de Pink and Pink Zone and public speaking and fashion shows and YSC and half marathons and sharing my story and this and this and this and this .... (breathe) I was somehow "healing" and "getting better."

But we don't GET BETTER.

(Updated from original on 9/13):

And we also don't choose what we grieve. Or what losses we feel.

I kept trying to tell myself that there are far worse off people in the world than me ... that I'm lucky and blessed (which I am) and that what I went through doesn't compare to the heartache others face. But that doesn't do me any good, either. Because I finally understand WE DON'T CHOOSE WHAT HURTS US. And comparing it to others' perceived pain is just that... perceived. We can't possibly know how another person deals or doesn't deal with his or her life events. We only know how WE, ourselves, deal. And that's all that matters.

And that I can still be blessed but also be in pain. That I can be lucky but still suffer from sometimes crippling anxiety. That I can be happy but also sad. That I can be indescribably in love with my daughter, and feel that life has blessed us beyond words. But I can also mourn not being pregnant. It's not that I WANT to be pregnant. We CHOSE adoption.

But I can also grieve the choice I lost - the choice that we say we made because we did - but at the same time, we didn't choose Li Fraumeni Syndrome, and Li Fraumeni Syndrome essentially took away the choice. LFS and the cancers that came before the diagnosis essentially did lead us down the path of adoption. We chose adoption, yes. But we did not choose the circumstances that brought us here.

So now it's time to grieve.
Pregnancy that won't happen.
Breast feeding that won't happen.

So telling myself that what has happened to me "wasn't bad enough to still feel this way or that .." was also another disservice. Because try as I might, I don't get to choose what effects something has on me. And I certainly don't get to choose when those effects might lessen. If it WERE my choice to stop grieving and to stop feeling pain and anxiety, I would have by now. I would have. 

http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

Read that. 

That post is everything. Tim says "Some things in life cannot be fixed. They can only be carried."

Somewhere along the way I tried to drop the pain - literal and figurative, by filling my arms up with my work - mentioned above. 

But, I don't want you to worry. Nothing new has happened. I'm essentially in a state of productive existence (I just made that up), meaning I'm carrying on and enjoying life, and keeping most balls in the air, but suffering from pain and anxiety. (I'm not STILL suffering; I'm just suffering.)

This is just me writing after a long hiatus. But I will tell you this:

I'm having more anxiety attacks than I was previously. I'm still seeing Dr. Kelly and still on antidepressants and anti-anxiety medication. I still exercise. And now I'm starting up physical therapy again. Not because my pain is back. But because it never went away.

And that used to KILL me - that PT helps but I'm never pain-free.  ("Why am I not better yet?! I've been doing everything I can possibly do to limit the pain. Foam rollers, PT, exercise, stretching, chiropractor, massage.")

I would say to Sean and to Dr. Kelly, "We tried everything. I never got better."

NEVER. GOT. BETTER.

This physical pain is here to stay. I must carry that now.

I've not lost hope that one day I'll be pain free. The difference now is there is no timeline. 

So for now I want to fully acknowledge that "healing" from breast cancer is no longer my goal. I'm going to let myself actually FEEL everything I threw away while I was busy "healing."

While I was "healing" I was running 5Ks and then a half marathon, and then doing Tour de Pink (still doing Tour de Pink as a volunteer) and sharing my story across media and at community events, running a support group, getting involved with the YSC and attending summits, attending LFS conferences and participating in a LFS study at the NIH, talking about my journey, blogging about my journey. 

Would I change any of that? Absolutely not. All of those things- I needed them, and I still do. They are good for me. They have helped me.

But while I was doing them I forgot to feel the pain below the surface, and actually mourn everything breast cancer took from me.

I tried to hide from myself what the breast cancer took from me by busying myself with what it GAVE me. 

It gave me strength and knowledge and a beautiful family. It gave me new friends, new connections, new information. 

And that's great. That's fantastic. But because I never let myself actually grieve what it took (my breasts, my reproductive choices, and the freedom of not worrying about a lump or bump), I set myself up for an unrealistic timeline of when I'm supposed to be "better" - whatever that means. I'll never be unaffected by cancer. Ever.

I bite the bullets and sign up for another 10 physical therapy sessions. Another appointment at the pain management clinic. Another blood draw. Another full day at the NIH, missing work. Another trip to Hershey. And again, six months later. And I'll be angry: that I have to miss work, travel to Hershey or the NIH, and go through this testing, and trying to get rid of my pain while also working full time and being a mom and wondering WHY AM I NOT BETTER?!

That ends NOW.

There is no timeline.

I am here. In the midst of all these appointments. I resent most of them. But maybe if I let go of my timeline I'll resent them less. Or maybe not. Whatever the case, I'll let myself resent all of it, if it means I'm going to carry the grief and let myself mourn. 

It's where I am and I'm not going to pretend to be anywhere else.

The five stages of Frozen

Let me preface this post by saying we just introduced Adele to the movie, Frozen, a few weeks ago. So what we're going through is something many of you have already been through, in 2013 and maybe 2014. And maybe even 2015. But for our family, Frozen has just recently become a part of our lives. No, it IS our lives. It IS. We ARE Frozen. 

denial, anger, bargaining, depression and acceptance.

The first time I saw Frozen with Adele I was literally blown away. I know, I know. The movie came out in 2013. People have already been in love and downloaded the music and bought the movie and bought all the dolls and sleeping bags and backpacks and wall decals. They did this all. But for me, I had just seen it for the first time a few weeks ago. And I LOVED it. Still do. Hands down one of my favorite Disney movies. I love the movie. Let's just let that be a thing.

Since the movie has premiered in our home it has been on replay, on average, (no joke), once daily. For the past three weeks. And the soundtrack? In the car on the way to school, on the way home from school, in the kitchen making breakfast on the weekend.

Adele talks about Sven and Anna and Elsa and Kristoff. All. the. time. 

Denial: It's a good movie, and Adele likes it, but just like Tarzan and Finding Dory, the hype will end and she'll move on to another favorite movie. 

Anger: Frozen, again? But we just saw it. We literally JUST watched the whole thing. Yesterday. And part of it this morning. And listened to half the soundtrack on the drive to school. Isn't there anything else?! I'll even watch Mickey Mouse Clubhouse. 

Bargaining: Ok, we can watch one part of Frozen. We can start it, but we won't finish it. Ok, one song. The reindeer song? The snowman song? Let it Go?! 

Depression: Frozen is my life. The songs are in my head every waking hour, and even as I fall asleep at night. I'm always thinking about Elsa and her struggle, about how Anna thought Hanz was the one, but he wasn't. (What is true love?) About how great of a character Olaf is. His comedic timing is impeccable. Josh Gad, the voice of Olaf, is hilarious. Sven is so cute. He licks the snowflakes in the sky as they turn to water at the end of the movie, when Elsa learns love thaws ice. Idina Menzel is SO freaking talented. Did anyone know this? Oh wait, everyone did. In 2013. But her voice, though. I want to be her. Kristoff is really sexy. (wait, what?). 

Acceptance: I'm not here yet, but I'll let you know when I am.

When I first saw Frozen I felt I could relate to Elsa and what she was hiding. She had this power, whatever she touched turned to ice, and the more she felt, the angrier she got, the more fear she had, the worse the powers. She hid it all her life until becoming queen, when she left, and literally, Let it go, creating a winter storm around her and no longer hiding her powers. 

I don't have powers. But I do have struggles, often that take the form of something cold and dark and icy. And I often feel I have to hide them.

It's no secret I deal with anxiety and depression and chronic pain. My last post I wrote all about my "year of healing" and how I started a new CBT and PT program. They are helping. I'm in therapy. I work every day to find balance. But I still struggle, and sometimes I get lost in my attempts at perfection, and forget I don't have to be OK all the time. Sometimes I can be "not OK" and it doesn't make me any less of a mother, or wife, or writer, or friend. 

There have been times in the past few months I felt like I was literally drowning. My job and my health and my healing, and being a mom, and my activities and my community service and advocacy, and responsibilities were too much. On the surface my head was above water and I was smiling and juggling it all. But below the water my arms and legs were treading water so fast I could barely keep up. My chin would sometimes go under. And I'd tread harder and harder. Just to keep my face above water. I couldn't let anyone see what was going on below the surface. 

There would be mornings I would cry to Sean, just completely overwhelmed at life, completely distraught that after years of therapy and being cancer-free, my pain and anxiety were still too much to bear. How was I STILL treading water?! Why am I not better?!

When I began my cognitive behavioral therapy I was diagnosed with Generalized Anxiety Disorder. I mean, duh, it makes sense. But really having a name for my spiraling and sometimes paralyzing anxiety was a relief. There's a name for what I'm feeling. I'm not making it up. I have a condition. And it can be treated. With work, work work.

I work every day at telling myself that just because I have anxiety and depression it doesn't mean I'm not a good mom. 

To take a step back, try my diaphragmatic breathing I learned in CBT, stop the spiraling thoughts. Address each thought. I can do this. It's OK to not be OK. I'm a person. And some days are better than others, some weeks and months are great, while others I am treading water.

Like Elsa I felt I had to keep my anxiety and fears hidden. I am high functioning. Type A. Busy, super, power mom and writer and blogger and volunteer, and planner. Playgroups. Cookie decorating. Lunches with friends. Co-leading a breast cancer support group. Cognitive behavioral therapy. Regular therapy. Physical therapy. Exercise. Laundry. Creating healthy meals for Adele. Sure, I got this. Grocery shopping. I got all of this. And under it all is the cancer and LFS. But I couldn't let it show. I was supposed to be OK.

But guess what? I'm not always OK, and that's super OK. So I'm letting it go.

All of it. Here I am, in all my glory. Sometimes I have terrible anxiety and am overwhelmed at the thought of getting out of bed. Sometimes my days are spectacular and I am overwhelmed by the love in my life. I am all of it.

We are in the season of Frozen now. I've felt trapped by the movie playing over and over again, and feeling, like Elsa, I was hiding something. I was almost haunted by how cyclical it was. The movie and my life. She started out scared, with these huge powers she had to hide. They created disasters and almost killed her sister. But love conquered all, and love thawed the winter. Love cured Anna. Elsa was able to use love to control her powers. 

But then the movie started again and Elsa faced the struggles all over, from the beginning. She had to learn love to thaw the ice. 

And I believe love does the same for me. I don't want to hide behind my anxiety and my pain. I want to own it. And the love of my friends and family make that possible. They accept me as is. They root for me, struggles and all. They never asked me to hide it. I told myself to. But I'm ready to let it go. 

This season, in starting CBT and PT and addressing some things that have been plaguing me for years - anxiety and depression and pain that was never really dealt with - has felt cold. Frozen. But I'm dealing with it now.

All winters must eventually thaw.