Cowgirls vs. Cancer

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Magical night

You know those red cowboy boots I wore into my mastectomy surgery, through each round of chemo and blood work appointments? Well, I spent Memorial Day weekend walking through stables, hay and yes, horse poop! It was the perfect way for me to christen those boots the right way! I spent that weekend in Montana with an inspiring group of women but, I’ve kept the experience to myself until now. I came home so filled with gratitude and emotion it felt like if I cracked the door open just a little to share, the emotion would be a tidal wave.

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Dude Boy ~ the gentle giant that melted my heart

I wish I could tell you we were all there celebrating the end of our “bump in the road”, but it wasn’t quite like that. We were each working on healing our hearts exactly where we were in our journey. Big Sky Yoga Retreats is the creation of Margaret Burns Vap, a yogi with a passion for horses, Montana and true connection. She sees the bond between human and horse as sacred, healing and inspiring. Within her amazing offerings of Cowgirl Yoga Retreats, she has created a weekend for women who have been diagnosed with breast cancer, Cowgirls vs. Cancer. It is a weekend full of connection, yoga, fabulous food, working with horses, quiet time and togetherness. The scenery is breathtaking, the horses are gentle giants and the camaraderie is supportive and loving. I will be forever grateful for being selected for this retreat and each person I met there.

Since the day I was diagnosed with breast cancer I had an aversion to pink, pink ribbons, and the words warrior, fight, battle, win, survivor…the list goes on. Cancer seems too sneaky and unknown, while all those words are so strong and definitive. It’s a scary thing and while everyone wants us to be cured, no one more than me, we will always have that question in the back of our minds. The question may not appear for weeks or days but sometimes it hits you over the head like a sledge hammer. And what about the women and men that “fought the battle” but don’t get to use the word “survivor”? They are the biggest, most fierce warriors of all. Once diagnosed with metastatic cancer, these women and men are in treatment for the rest of their lives. Treatment is meant to extend the length of their lives. Much needs to be done to increase awareness, understanding and research for this area of breast cancer. Among the amazing women I met were two doing remarkable work to raise awareness and research on metastatic breast cancer.

Hope Scarves is on a mission to share scarves, stories and hope with women fighting breast cancer. Check out their website. My friend Lara MacGregor is doing great things! If you have a scarf, story, donation or all of the above, I know Hope Scarves would be grateful! Hope Scarves was recognized at one of the Massachusetts General Hospital 100 which honors 100 Everyday Amazing individuals and groups — caregivers, researchers, philanthropists, advocates and volunteers from around the globe raising awareness and money in the search for treatments and a cure. Lara is an amazing woman turning her experience with cancer into a mission to impact others.

Met Up is an organization that my friend Jennie Grimes is a part of. Met Up provides information on metastatic breast cancer shared by women and men with this disease. They are dedicated to raising awareness and changing the landscape of how his disease is viewed by the research, fundraising, political and medical communities. Jennie is a fiercely passionate spirit, fighting metastatic cancer and standing for others in the process.

I fell in love with the horses and the 7 other women who came together to heal their hearts along with the people who donated their time, talent and products to our weekend. But, I left knowing this, it shouldn’t only be the metastatic women and men fighting for their lives. We “survivors” should be standing with them fighting for more research money, attention and focus on the metastatic disease. My heart is so full it aches a little but my focus is fierce.

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I encourage you to explore more if you want more information.  I know for sure that when fear is brought out from the dark places and into the light, it loses its power.

Thank you for being here.

Love, Carlene

By |January 5th, 2016|Yoga|0 Comments|

BRALESS IN BOSTON

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We’ve all been there. Braless in Boston. Maybe you haven’t really been braless in Boston but you have been vulnerable at some time in your life, maybe many times. Vulnerability is an opporunity to open up or close up tight. I’ve spent the last 7 months ‘fighting” breast cancer (the whole “fighting”, “warrior”, “brave” thing will be addressed in another post). A whole lot of that time is very hazy but I think the important things are really beginning to crystalize for me.

On October 16, 2014, I was called back for a mammogram to look at an “area of interest” that showed up on a routine breast MRI. I sat in the inner waiting area at the Avon Breast Center / Massachusetts General Hospital for my biopsy thinking, they should really serve wine and cheese here. Here we are, each woman sitting braless and wrapped in a hospital johnnie, waiting for the ok to get dressed or come with us for a closer look. No one speaks. We all just sit there in our own cloud of thoughts and fears.  Maybe if we had a cocktail, we’d open up, say hello, how are you, could you please pass the cheese?

An elderly woman was wheeled into that waiting room and plopped right in the middle of all of us. She was clearly hearing impaired because she spoke so loudly and each nurse had to speak twice as loud to her. There was her story, blurted out for all of us to hear. She said that she had breast cancer twice before and she just knew there was something now.  She loudly listed her diagnosis, years, treatments and loss of her husband.  Every fear I was sitting with just completely voiced by this spunky, well dressed, wheelchair bound, practically deaf woman.

Could someone PLEASE give her a glass of Chardonnay?  

It felt so bizarre. A room full of what I’m sure were amazing, strong, interesting, remarkable woman but we sat silent, barely glancing at each other. I wondered how many times my own mother and mother-in-law sat in a room silently listening to their own fears. We had something to offer each other, conversation, comfort, and experience.  This is how this website will evolve and why my caringbridge site was written the way it was. I know that sharing my experience honestly and openly not only strengthens me but also may just empower or comfort another.  It isn’t all about cancer.  It is about having a human experience, wherever life brings you.

It’s been a journey over these months of surgery, chemo, doctor’s appointments, hair loss, sickness, friendship, family, and camaraderie, highest of highs and low lows but here I am. I am still sharing what this has meant to me. I am grateful for all of it. Without the crappiest parts, I would not have what I have today.  People walk this journey every day, in many, many different ways.  The past 7 months have changed me.  I am more open to speak to that woman or man sitting on pins and needles next to me.  I am also willing to share my experience to help another.

Stay tuned and next time you are sitting braless (literally or figuratively), clutching your pocketbook, frantically texting your go-to friend for crisis , look at the woman/man sitting next to you or across from you. Send some love whether silently or in your conversation. You will ease their wait and definitely ease your own.

Thank you for being here!  Love, Carlene

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By |January 30th, 2015|Yoga|0 Comments|

A MARATHON FINISH FOR BOTH OF US

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It has been 6 weeks from my last chemo. I am so thankful that part of this process is over and I will forever pray for those going through it. It’s funny, when I think back to each time sitting in that chair, I remember the person (patient) in the same chair across from me. Each person with their own story, strength, fears, and prognosis. Each chemo treament I recieved is marked by a face. Others may have labeled them “first one” or “half way there” or “last one” but I remember them by who was with me and that man or woman sitting across from me in the chemotherapy treatment room. I may not have spoken to them or know exactly why they were there but I remember their faces I have met many amazing people along the way but the ones I think of most are the two women I met at a “look good, feel good” class (aka~how to draw on eyebrows), those brave warriors sitting in chairs across from me during our chemo treatments and the women/men close to me that have or are going through treatment now. I have a different understanding of this experience and will find a way to use that to help others going through a health challenge. God, my family, friends, amazing healthcare team, yoga and meditation practice carried me through this. I will continue to let that carry others.

I am feeling more energy and stronger all the time. My hair has started to come back and it cant grow fast enough for me! I’ve spent the last few days visitng my father and step mother in FL so I am hoping the extra sunshine will help it grow like grass! I’ve been walking around FL half bald and do not want to put a hat back on when I get back to NH! I have two more minor surgeries, one on May 5 and one probably end of summer or early fall. Thank you all for your support! Each text, phone call, FB message, card, kind word has been appreciated and made a difference. I am always happy to share what I have experienced and learned along the way so NEVER hesistate to ask me a question about my experience particuarly if it can help you or another person going through this.

This coming Monday, Matt will run the Boston Marathon for Dana Farber Cancer Research for the tenth time. We began our involvement with Dana Farber back in 1999 as a way of giving back for the care our mothers recieved during each of their cancer battles and as a way of honoring their memory and keeping them close for our growing family. The Dana Farber marathon challenge has been a part of our family history from the time Chloe was a newborn. We have experienced great joys and tragic lows in this process. I am so proud and always amazed at Matt’s ability to exceed his fundraising goals and run the marathon with a true purpose! Chloe, Jack and I will be at mile 25 cheering him on and knowing that each step he makes, he has and will continue to make a differnece for someone with cancer. Matt has always run with the names people have shared with him either in honor or memory of on his shirt. We can’t fit all those names on his shirt anymore. He will always keep each name with him from the first race in 1999 to whatever race he is currently running. We write each name, each year on a banner that we hold at mile 25 and we pin a list to his shirt. Those names are the true marathon runners and he runs to honor them.

I have my eye on the end of this tunnel. I have learned a great deal along the way and grown as a person. I am looking forward to seeing where this new path will take me. I am going back to teaching yoga, practicing regularly and continuing my yoga training. I love sharing what this has meant to me and how it has changed my life. This site has been greatly neglected over the past six months but I am committed to getting back to writing and sharing. I’d love it if you’d stay with me and become a part of that journey. If you are interested, just sign up on the website for email updates. Each time I share a journal entry, you will be notified via email.

Words can’t express the gratitude I feel for my health and each person in my life. You each have helped me more than you know.
Love Carlene

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By |January 15th, 2015|Yoga|0 Comments|

I’M NOT FINISHED…


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I was recently asked by a hair care company to contribute to their blog speaking about the process of losing my hair during chemo. They sent me a list of questions and I answered them. The funny thing is, none of my answers seemed to have much to do with losing my hair. Yes, there were specific questions about the how, when, and emotion of it but overall, I had to dig to actually have my experience relate to hair.

The process of answering these questions did however bring me back to something that I love…sharing my experience. I realized that writing my caringbridge posts throughout my breast cancer journey has been a huge outlet.

This “post cancer” time has not been an easy one for me. It feels like the time when everyone is happy to see me “finished” feels anything but finished. I am not finished. I really only just started to process what has happened to me and I’ve been doing that in secret because I feel like I should be moving on. So here I am…stuck between the heartfelt good wishes and awesome support of people wanting me to be “all better” and the voice wanting to scream back “I’m not finished!” I’m not finished with treatment, not finished realizing I even had cancer, not finished digesting that this ugly, awful, evil disease that stole my own mother at 36 and my mother in law just showed up in my own body! I’m not finished trying to recognize my new body or my new hair in the mirror. And I am certainly not finished with the scary ups and downs of what it means to be “post cancer”.  I meet people for the first time now and I want to introduce myself and say, “this is not really me, I used to be someone different”.  This statement never more true than the day in May that I had to renew my license at the DMV.  Now every time I have to show my license, I either laugh a little or cringe.  Gosh, I wish I sucked it up and smiled in that pic!!!  lic copy 2I guess it’s all part of the process.  It’s really not about the hair, it’s just a reminder of where I’ve been and how far I’ve come.

I know, though, this IS me and now I move forward. The way I will do that is by helping others. I don’t quite know what this will look like but I know I’m on the right path by sharing my experience. And maybe by sharing my experience, it will help another to process something they are a going through.  I know for sure that letting my thoughts, feelings and experiences out makes everything much clearer and light.  So for now, if you’ve ever felt the way I do about anything, turned on the smile but kept those scared, sad feelings pushed down, know that you are not alone.

Each of us has the outside story and the inside story. The more you share that inside story, the less power it will have over you, the more others will connect and share themselves this way.  That is real power.

Power of connection.

Love Carlene

 

By |January 15th, 2015|Yoga|0 Comments|

CHEMO, HAIRCUTS and NEW ADVENTURES

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Deep breath before the haircut

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Sometimes, you just suck it up and smile.

I began chemotherapy on December 30th. I will have four total treatments spaced three weeks apart. Matt came with me to my first treatment. I was nervous but so well taken care of and surrounded by the bravest people! Chemo came with all the ups and downs that were promised in the beginning. Nothing too bad, I just thought I could use my super yogi power to outsmart all the side effects. I quickly learned that I need to rest and become a more patient patient! I’m working very hard to let go of the dread for the next treatment Tuesday 1/20 and to focus on what the chemo is meant to do… insure my healthy, long future!

The main focus of these two weeks other than getting Chloe and Jack back and forth to school, basketball and practice has been the dreaded hair loss. I decided to take the bull by the horns and cut it before it begins to fall out. I found a company in FL that will take my hair and make what they call a “hair halo”. It is my hair attached to a small cap that I can wear under hats and scarves. I think it will provide just enough security to cover my neck and make me feel a little like normal having to wear a scarf/hat for the next few months. I figure I will either love it or never use it. Cutting my hair was much less traumatic than I expected. Chloe and Jack literally cut the entire thing! My aunt Joanne cleaned it up the next day so, as Jack put it… I didn’t look so crazy!

Cancer was not part of the plan but, Matt leaving Oracle after 15+ years and starting his own business was. On the car ride home from our first appts at DF and MGH my first comment to Matt was that I didn’t want cancer to change our plan! One of the ways we were preparing for this big move was to mentally prepare for the bumps and challenges beginning a new business. This was a big “HOW BAD DO YOU WANT IT” moment right off the bat. We know that we can handle both, recovering from cancer and beginning a brand new exciting adventure! It requires a lot of team work and understanding all over the place but I am so happy to say that Matt is working with two amazing partners and has launched RPG ~ Revenue Performance Group! I am over the moon proud and excited to see Matt take on this new roll. All this and he continues to train for the Boston Marathon and his 10th year running to raise money for cancer research at Dana Farber.

Going thru cancer has brought me friendships I may not have had, strengthened friendships and family that I already cherished, taught me lessons and showed me things about myself I may not ever have seen. Thank you for the continued love, support, pep talks, food, rides, texts, calls, waves, cards and everything in between! Now, back to the reality of today… one very unhappy/tired Oregon fan, Chloe studying for midterms, ortho appointments and basketball games! …And hopefully a nap in there somewhere!

LOVE
Carlene

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By |January 14th, 2015|Yoga|0 Comments|

CHEMO HUMP DAY

Hopefully half way finished!
This coming Tuesday is my third chemo treatment. I now feel at least half way through this part of my chemo. For those in the know, “the red devil” is almost done. My oncologist left a door open to the possibility of four more treatments after this round but I am taking this one step at a time and hoping to have a better idea after my appointments on Tuesday. I scheduled my final surgery for mid May and looking forward to surgery being the final step in my recovery. It’s a day surgery to finish the reconstruction then on to summer!

All has been well at the Benelli household. I continue to be so well loved and cared for both by my family and our friends and neighbors. Thank you just doesn’t even come close to expressing the gratitude I feel for the prayers, cards, flowers, visits, food and love I continue to receive and all the care toward Chloe, Jack and Matt. Chloe and Jack continue to be crazy busy with school and basketball. They have also been loving all the snow days, late starts and the big Pats win. I welcome the days off from driving and running around. Matt has been busy working on his new business and training for the Boston Marathon with Dana Farber. We planned a trip for February vacation to Big Sky Montana. The kids and Matt will ski and I will find a cozy place to cuddle up and rest. I am also looking forward to meeting a fellow yoga instructor who runs an amazing yoga retreat out there called Big Sky Yoga Retreats. Each year, she holds a week long retreat for breast cancer survivors in addition to other amazing yoga retreats.

I know I will use my experience to do something to pay all this amazing support forward. Right now I am just soaking up all the inspiration around me and will let the path appear.

Losing my hair has been the hardest part of the past month. I look in the mirror and don’t even recognize myself:) Needless to say, my hat collection is growing and I don’t love the hair halo I had made with my hair. It feels like a mop on my head that doesn’t belong. I’ve opted for just the hats and when I’m home (and it’s warm enough) just being the baldie that I am.

Thank you again for all the love and support! I will keep you posted. Love Carlene

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By |January 8th, 2015|Yoga|0 Comments|

TMI

I’m going to spare you the details but I had a proceedure today at MGH to check me out further for any issues relating to my Mother’s colon cancer. My mom died very young from the disease and I’ve always been followed closely. My surgeon suggested I get checked bf my breast surgery and I am happy to report that all was good! I knew all that green juice and veggies were good for something! I am so relieved that the test is over and I am all clear! I have to admit that having developed breast cancer has rocked my confidence and made me pretty concerned that something else could show up.
I am happy to report that I am back to dealing with the original issue, and will take the next few weeks to prepare for surgery and whatever steps we take from there.
I am thankful for my doctors and surgeon from MGH and Dana Farber. One step at a time. This step is to keep life as smooth and normal as possible for my family.
Thank you for all the words, support and prayers. Hoping for no more appointments until closer to the 20th!
Have a great weekend and I love you all!
Carlene

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By |January 30th, 2014|Yoga|0 Comments|

What’s the plan?

Thank you all so much for the overwhelming love and support. I can’t even express how each word has landed in my heart!
Well, its been about 7 days and I can’t even believe this is happening! Matt and I spent the day in Boston yesterday. I had a consult with the plastic surgeon that will work with my surgical oncologist. She is an amazing surgeon and comes highly recommended. That was the lighter part of the day…. even with all the gore of how this will all go down, I am confident that in the end, I’m going to be very happy with the results. Dana Farber was definitley a harder appointment. We met with a medical oncologist at Dana Farber. He went over my biopsy results, pending surgery and next steps after the surgery. We definitely have a clearer picture of how this will all go down and chemo seems to be lurking in the wings. Matt and I are powering through this to get as much information, confirmation, and guidance as we can. I am the luckiest girl in the world to have such an amazing husband!
My surgery is scheduled for Nov20. It will be about 5 hours and I will be at Mass General Hospital. It can take up to two weeks for all the pathology to come back so I will be home healing and waiting for next steps. I know that I will be in the hospital for two nights and can’t do anything for 6 weeks. I will be traveling back and forth to Boston quite a bit. My father and Liz will be here to make everything run smoothly as well as make an endless supply of comfort food for all!
I was scheduled to attend a yoga training in Utah on Nov 6-15. Ive been waiting for this training for a year! I decided I would wait for my surgery date to see if I could still pull it off. As much as I want to be the girl with her middle finger up to cancer, and head out to Utah, I feel like the place where I will get the most strength is home with Matt and the kids. I have amazing family and friends that are truly loving me up! I also have some outrageously inspiring friends who have traveleld this road before me…they are making sure I don’t miss a thing!
My faith and my yoga practice have given me a gift to keep reining myself back into the present moment. I keep coming back to right now and taking each thing as it comes, not focusing on what will be next. I am in good hands, I have a lot of faith and I have some kick ass guardian angels!
Tomorrow I have a proceedure that I need to get out of the way before any of this happens and I would love a little prayer that it is completely uneventful! I also have a dear friend that was diagnosed the day after me! If the prayers are flowing, send her some love too!
I will keep you posted!
Love, Carlene

By |January 30th, 2014|Yoga|0 Comments|

The Boston Marathon Scarf Project

The marathon was a beautiful, sunny, warm April day.  So, why was I wearing a scarf??

That blue and yellow scarf was given to Matt the day before the marathon.  The Old South Church on the corner of Dartmouth and Boylston St in Boston (just beyond the marathon finish line) gave out more than 7,000 of them!  The scarves were made all over the world and in almost every state in the US, sent to the church where they were blessed and given out to the runners!  Volunteers stood in front of the church passing out the scarves for days.  Easter Sunday, walking around Boston, you could see a sea of all different blue and gold scarves.  Complete strangers were coming up to Matt wishing him good luck and God’s blessing for the marathon.

We attended Easter mass at the Old South Church.  The priest handed them out to non-runners and asked that they placed it around the neck of a runner with a prayer for safety and a great run!  Our daughter,Chloe, placed the scarf around Matt’s neck which he wore all day on Easter  Sunday.  On Marathon Monday, I placed that scarf around my neck as I waited for Matt to reach us at mile 25.

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If you knit, you understand.  When I knit a gift for someone, that person is warmly in my thoughts while I am doing it.   I am grateful for the time, effort and care they put into that scarf.  We felt it!  It reminded me of the power of being of service to others and how powerful an act of kindness can be.

Thank you to Ginny, Pat, Myrtle, Carmella, Jean, Elaine, Nancy, and Lee Ann.  Your scarves provided comfort, love and inspiration!  Love, Carlene

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By |January 30th, 2014|Yoga|0 Comments|

Peace in the Present Moment

The Boston Marathon 2014 is complete.  Matt made his best time in 12 marathons, blew away our fundraising goal for Dana Farber Marathon Challenge and it was a peaceful, sunny, memorable day.  I have never run the marathon.  Each year, someone on the course inspires me with their determination, perseverance or possibly a Wonder Woman costume with a tutu and I think, I should do that!  That thought quickly fades and I am happy to cheer on my husband from the sidelines, he is the Marathon Man in our house!  Who knew back in my college days of “watching” the marathon from Whiskey’s on Boylston Street that it would come to have so much meaning in my life.

April 14, 2013 on the car ride home from Boston, I can’t say I was surprised when Matt stated his plan was to run again.  Deep down I would expect nothing less from him and I had no energy to argue after hours of not being able to find him during the chaos of that day.  I secretly hoped he’d just forget to train.  The past year has been one of his quiet determination after being stopped just minutes from the finish line. I wrote as a way to process the marathon day last year.  I learned this year, this marathon day, peace in the present moment.  True peace is in the present moment.  Each time my memory was stirred, my heart fluttered or my pulse quickened as I was brought back to the events of last year, I said to myself, “ be HERE now”.  When I am in the present, I am not reliving stories from the past or trying to predict the future.  Although I am proud of my very first blog post,   , it is now just a story from the past.  This Marathon Monday, I chose to experience the marathon in the present moment, reminding myself to “be here now”.

Cheering Section! Nephews Aidan, Cole, Sister in Law Lisa, Chloe and me. Mile 25!

Sending a big thank you for the encouragement, love and support of friends, coworkers, family, neighbors and people we have never met.  Thank you to all who supported our fundraising efforts for Dana Farber and who shared precious names of the people close to their hearts who are fighting or have lost their battle to cancer.  There were too many names to fit on his shirt this year so we wrote almost 175 names on a piece of paper he carried.  Matt carried those names all 26.2 miles but more importantly, the meaning they have, carried him.

Wishing you peace in the present moment.  

By |January 28th, 2014|Yoga|0 Comments|