Welcome Back!

Welcome Back! That is what my 4 year old son said as I shuffled into the house 4 days after a ridiculously complex reconstruction surgery. His bright eyes and eager smile along with his 20 month old sister’s enthusiastic, “Hiiiiiii!” was exactly what I needed.

Cancer gives you no time. No time to process the reality, the fight, or the emotions that in the end seep out. She’s fast and furious and you feel like if you aren’t faster…you may not finish.

There is no amount of research or conversation that can prepare you for this procedure. I thought I knew what to expect. This entire fight I have asked, begged, my doctors, nurses, and other fighters to tell me the worst that could happen; from side effects, scars, appearance, and risks. It has allowed me to feel somewhat prepared and less anxious and a bit stronger and more in control. So, heavy is my heart when I say, that I was underwhelmed and disappointed with this last surgery, that my expectations were higher, and that it has taken me these past 5 weeks to accept and process these thoughts without feeling so much guilt.

Technically, reconstruction using your own tissue is becoming more common and I understood the basics of this procedure. My plastic surgeon is one of the best and I was fortunate and blessed to have him spend over 11 hours recreating my body; his hands were steady, his energy unwavering, and his team strong. He greeted me with an easy grin as I came out of the fog of anesthetic and told me what a success the surgery was.

Physically, the first days felt as though a huge weight was resting on my body. I really wanted to move but knew I wouldn’t because the pain was unbearable and seemed insurmountable. A week into recovery, and I did not have much real pain but I was exhausted. Trying to hold myself up for more more than a few minutes felt impossible. I’d crumble over from a fatigued back and legs and need to rest. Five weeks into recovery and I am walking 30 minutes twice a day and going about life getting stronger. My children have adapted to my limits and have undoubtably become my “little helpers.” I am counting the days until I can hold my sweet girl when she looks at me and says, “Up, mama, pease” and lay with my brave boy as he tells me the tales of his day with vivid imagination.

Emotionally, I am trying to embrace this new body. I created this image and allowed myself to fantasize about my sweet reward for fighting Lola. After a full year of physical changes, hair loss, weight gain, double mastectomy, and numerous smaller procedures and scars, I thought I would embrace anything that resembled the female figure. But it has been difficult. What my doctors call “beautiful” and “almost flawless” looked unrecognizable and raw for weeks before it all started to settle, adapt, and conform to my body. I find myself dressing in the shower at the gym and locking the bedroom door when I’m changing, mirrors are for the neck up, and yoga paints are officially part of my body. I’ve been told that with 2-3 more procedures and another 6 months, my surgeon can continue to rebuild my body. So, I will keep trudging to a healthier me; mind, body, and soul and I will hope and pray that I will accept the end result and regain my self confidence. It is a simple truth that beauty lies within…I will spend my life instilling that truth in myself, my children and those around me.

As for complete healing, there is something to be said about “going home.” I have been wrapped in the warmth of my family these past weeks. They are allowing me a safe and gentle place to get stronger. They have put aside their own struggles to embrace me and their selflessness continues to have me look upon them as my heroes. In my life, I am touched by many. Thank you will never be enough.

Peace and love

I have always thought that I was very aware of those around me and what struggles they might be experiencing. When I was a diagnosed with cancer, I realized that although I may be aware I certainly didn’t understand. I realized that it was those who have fought or were fighter something greater than themselves that truly understood and empathized. And it was those, who I found, provided me with the safest place to let go and the greatest of life’s lessons.

This week I lost my aunt, Aunt Sal,  and today we lay her to rest. She was a wife, mother, grandmother, sister, aunt, and fighter. I don’t think I recognized the latter until I was forced to reflect on her life and the relationship I had with her. She loved her family and was proud of each and every one for being strong enough to be themselves, something she may have envied instead of recognizing within herself. Whatever her struggles were, they didn’t get in the way of her heart. This past year, she chose me to include in her warmth. She taught me to look past others’ and myself’s image and draw on what I find within. She reminded me that it is not our “place” to judge others, as we were not perfect, but to love others.  As the date of my reconstruction approaches, I will draw on her love and try to accept the changes and embrace my scars as memories of strength snd courage.

After going through my own bout of self pity and sadness, this past year, I was awakened and lifted by those around me. Aunt Sal, the kindness and love you extended to me and my family will be remembered and cherished…just as your smile and LAUGH! May your soul be at peace and your heart reunited with Jeff, Grandma, and Poppy.

Peace and love.

I walk away…

Today was the last day of a 28 day straight radiation regimen. Today is also exactly 7 1/2 months since Lola dropped into my life. It’s been a fast and furious journey. One that not only caught me by surprise but taught me more than I ever considered imaginable.

I walk away, today, with bruised and burned skin, a ticket to fall asleep at 7p.m., and gratitude that I don’t feel worse.

I walk away with motivation and determination, compassion and understanding, and a handful of new friendships I’ve made as I sat waiting among the bravest people with the most contagious attitudes. Each of their stories more challenging than my own.

I walk away having met too many doctors, P.A.’s, nurses, CNA’s, technicians, and social workers but thankful to each and every one of them. Not only did you save my life, but you also gave me a safe place to let go. You nurtured, protected, defended, and most importantly, you listened to me. Your dedication and passion gave me a second chance at life and the opportunity to live it fully.

I walk away knowing that the next phase is reconstruction; my body, soul, and mind. I will face this last hurdle with some trepidation but mostly with anticipation of finishing this journey.

And again, Lola, I am still standing and can still walk away.

Tikkun Olam

Goodbye 2013. Although you have taught me more than I was ever prepared for, I am not sorry to see you come to an end. I am stronger, more inspired, and more aware. You have proven to me that my world is full of goodness, even in the darkest of hours. 2014, I plan to live you out to your fullest and I promise to extend the goodness I was wrapped up in to others.

I teach at the Jewish Community Center. Not being Jewish, I wasn’t sure I would be able to embrace their culture enough to extend it to my students. But I didn’t have to.  The JCC community embraced me and through their modeling and passion, I have been able to not only appreciate their way of life and teach it but I have also incorporated some of their Mishnahs, instructions or teachings, into my own life.

One Mishnah that I find beautiful and so incredibly important is their inherent obligation to repair or heal the world,  “Tikkun Olam.” By doing acts of kindness, big or small; peace, love, kindness, and joy can be shared and passed forward. This act of giving is called tzedakah. There are no boundaries when giving. Whether you help a stranger or someone close to you, preserving the dignity of the recipient is the cornerstone of tzedakah.

This past year, I have experienced first hand how incredible it feels to be the recipient of such unselfish giving. So many of you have reached out, offered yourselves, your homes, your time, all unselfishly and all without desiring recognition. You know who you are. You have been a model of empathy, caring, and unconditional love.

This year begins my journey of reconstruction; physically, emotionally, and spiritually. Your strength and goodness will continue to guide me. Thank you for teaching me so much and for providing for and protecting my family when I couldn’t do it alone. I will make it my life’s mission to pay it forward.

Peace and love as we begin a new year!!

“There is a light and it never goes out.”

 

Hey world! Watch out. I have a new drive and gratitude for life.

Last month, I was fortunate enough to attend a very intimate yet vibrant brunch and local art auction, “Creating For A Cause.” Maybe 200 women and a handful of men joined together decorating bras to honor the many breast cancer fighters, survivors, and lost loved ones. I invited one go my greatest friends and derby gal, Ashlie, to join me. It was a terrible cold, windy, and rainy day but underneath the canopy, away from the elements, you were immediately wrapped in the warmth of love and understanding. It nearly took my breathe away.

We grabbed a few braziers, some feathers, rhinestones, beads, and hot glue and settled ourselves at an open table. The energy was alive under this small tent. There were so many smiles and laughter filled the quiet spaces. I felt for the first time since Lola that I was completely understood without having to say a word. I was at peace with this fight. I was surrounded by women who also felt defined by their cancer and are fighting as hard to keep from losing themselves as they are their disease.

The gluing and decorating slowly switched to watching a beautiful documentary about the local artists who were there and the stories behind the pieces they donated. One of my favorite artists, Leia Belle, was there and I was pleasantly waiting to see her work. I was not prepared for my reaction or my connection to her painting. Before they announced her as the artist, I was already captured by the beauty of the story within it. I found myself so drawn and emotional that I felt compelled to first guard it with my eyes, as the rest of the documentary and art was presented, and then with my body, as I stood near it waiting for them to announce they we’re up for sale.

She lost a friend, who was also a young wife and mother, to breast cancer last year. Her painting is in honor of her and her hard fight. Although the painting represents birthdays she will miss, it was also created to remind her friend that her light will never go out and with each year they will celebrate her.

When I first saw this painting, I saw myself, so thankful for another birthday. But I also saw each and every person who has stood by me through this horrible ordeal. It is because of you never letting go of me that I had the strength to beat Lola.

I immediately called Derek and asked him if I could buy it. Begging, really, that it could be my birthday and Christmas wrapped in one. Not giving him a minute to speak, I continue to try to sell him on the splurge. He finally interrupted me with an, “Of course, it’s yours. You deserve this.” Without a thought I find the woman who is taking payment and watch as she puts a sold sign on the painting. I am in this crazy state of giddiness when Ashlie walks over with Leia Belle. I tell her how amazing she is and how magical this painting is for me. We both get emotional and like a crazed fan I ask her for a photograph.

I am floating as we leave. Feeling more alive and inspired than I have in months. For those of you who are familiar with my house of loving chaos, you will have to see the painting that captured my soul.

Ashlie, I couldn’t have asked for a more perfect friend to have attended this event with. Your kind soul has kept me from allowing myself to become invisible. Long ago, you helped introduce me to the world of roller derby, a time in my life that I needed to be around strong and inspiring woman. You and the other Salt City Derby Girls helped bring out a lost confidence and strength that I continue to draw on. Thank you for “reffing” this fight and keeping it as fair as it can be. I love ya.

Today, I am saying it out loud. Really loud. After 8 months of fear, chemo, surgeries, radiation, and crappy side effects, I am CANCER FREE! And in 5 years, I will scream at the the top of my lungs that, ” I am cured!” Until then, I will open this beautiful gift of life and wrap myself up in it. Happy Birthday to me!

Super Heroes

My son wants to be Captain America for Halloween and my daughter Wonder Woman. When I asked what super hero I should be, our conversation went like this…

Rourke “You already are my super hero. I call you SUPER MAMA.”
Me “What are my super powers?”
Rourke “Silly mama, you can do anything. You have all the powers. You’re just allergic to kryptonite like Superman.”
Me “Ooh. That sounds bad. What do I do?”
Rourke “You tell your doctors to stop giving you kryptonite.”

With that he gave me a huge hug and he and his sister took off in their capes to save the world!

When I was a little girl I looked at my parents like they were super heroes. My mom, calm and nurturing, always taking time to teach and show us what she was doing. She tapped into our interests and encouraged us to work hard. She always seemed to be there when you needed someone. And my dad, so strong and unwavering, willing to put all of our needs ahead of his own. He too, found the time and patience to teach us valuable skills and lessons. He could fix anything (still can) and would show you how all his gadgets worked. I can’t remember a time that kryptonite knocked them down. At 73, they are still my super heroes. They can still do anything and can still wrap me up in a blanket of security.

To my incredible children, it will take more than kryptonite to keep me down. You are the strength behind my every day. Together with our super powers, we can finish Lola off with a big…
KAPOW!! BOOM!! SPLAT!!

Exhaling

Last night Derek came home and asked if he could talk with me away from the kids and my parents. He had such an intense look on his face that I almost shook him find yelled, “Tell me. Tell me the terrible news!” But before I could, he put my face in his hands, smiled gently, and said to me,” It’s gone. All of it. You are cancer free!”

He had spoken to the surgeon earlier in the day and was told that the chemo shrunk Lola from a 6cm tumor to a 3mm tumor and there were no signs in the surrounding tissue or the lymph nodes. I hadn’t realized how badly we needed to hear this news and to say it out loud. I watched as my husband exhaled for the first time in 5 months. I exhaled too.

Derek, we made it. Together and stronger than ever. You have been the strength and rock for our little “pack” and gratitude fills my heart. Thank you for loving us. Thank you for believing and reminding me to believe. Thank you for standing by me, for being my punching bag, for picking me up, and for looking at me like you did 10 years ago. Thank you for being such an incredible father and role model for our children. I know the road ahead is still rough but I have no doubt we can walk it together. I love you so much.

Peace and love to all! Your love and prayers have carried us thus far and we are counting on them to carry us to the finish.

Healing…

Healing-(n.) the process of making or becoming sound or whole again.

It has been one week since my surgery.  Yesterday, I sent my family to mass so I could remove the bandages and vest and really take a look at what Lola has taken from me.  I didn’t recognize the person in the mirror staring back at me.  My hair is thin, my chest is sunken, the bruising is dark, and my skin, still stained with ink from the surgeons map, is tender.  Not to mention the incisions that will soon become scars. I wanted to  scream but I just stood there trying to find some piece of myself.  How did this happen?  I’m lost, defined by cancer and the cruelty it brings, I have lost part of myself. If someone would have warned me that Lola was in my future, I would have been a little easier on myself during the awkward preteen years and every year after that.

Although I am very limited, I am getting stronger everyday. Surrounded by so much love and kindness that there are moments I feel undeserving.    I am reminded daily that this is a small part of what will be a very long and enriched life.  I am reminded that this is a process. I am listening.  I hear you.  I am also leaning heavily on you. And one day, I will truly believe you.

The day

8/26/2013…For days now I have been hit multiple times with heavy blows. Out if no where the heaviness of the last 5 months takes my breath away and leaves me doubled over. As ready as I am for Lola to be stripped and gone, I am equally unprepared for my femininity to be taken from me. Today I have a double mastectomy.

I woke with an awkward calm. I welcomed the darkness of the early morning, watched my adorable children sleep, and then sought out Derek so I could thank him for keeping our “pack” together. I asked my mom to pray with me and together we leaned on God to stand beside me today and guide the hands of my surgeons.

The drive was too short. My body shook and I couldn’t breathe. I was certain I was not strong enough to do this. Derek held my hand and promised me I wasn’t alone.  Knowing this was true we walked in together.

The entire team of doctors entered my room at some point with such confidence and positive energy that trust started to outweigh fear. Of course, my favorite visitor was the anesthesiologist and his greatly appreciated gift of “happy juice.” My goal was to make a personal connection with each one of them so when they were operating they would never lose sight of who I am; a woman, mom, wife, sister, friend, fighter.

The surgery was about 4 hours followed by an hour of recovery before I was awake enough to see anyone.  Derek was in my room waiting with a bright smile.  He came close, grabbed my hand and told me,”They got it.  All of it.  And so far, the lymph nodes tested  negative.” I’m sure I smiled as relief and fatigue swept over me. I don’t remember much after that except a very peaceful sleep.

Lola, you tried to weasel your way in but you weren’t smart or strong enough.  So long and good bye.

I am really struggling, right now.  I am  going through the motions of the day and my head is in a fog.  It is two weeks until my double mastectomy.  I am officially losing it.  I am emotional, angry, bothered by the sound of my own breathing.

The problem… I am NOT in control and haven’t been since March 28th.  I don’t like it.  It makes me feel weak and unprepared.   It is a feeling I cannot get used to. People ask me everyday what they can do to help and I want to scream, “Give me control of my life back!”  But because that is a ridiculous demand, I make a simple request and try to walk away not feeling too small and accept the kindness. Selfish, right? When I see a need I can fill for someone I want them to allow me to do so.  It enriches my life.  But turn it around and I’d like to run, scream, hide, anything but open up.

I recognize that when this is all over andI look back on how little of my life Lola took from me, I will have a different perspective.  For now, she feels all encompassing and quite suffocating.

Please forgive me if I have not accepted the many acts of kindness that have been so graciously offered.  I am learning and changing every minute. Your love and support is what carries me in the harder days.