I’M NOT FINISHED…


butterfly

 

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 |November 15th, 2015|Yoga|0 Comments|

BRALESS IN BOSTON

Cropic Share File

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

A MARATHON FINISH FOR BOTH OF US

552e6e9aca16b40f5ef81661

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

By |April 15th, 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

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

CHEMO, HAIRCUTS and NEW ADVENTURES

54b527dcac7ee9a85c390e83

Deep breath before the haircut

54b527dcac7ee9a85c390e8f

54b527dcac7ee9a85c390e9b

 

 

 

 

 

54b5225ba689b4703e51cd4a

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

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

Holidays, new year planning and chemo…

I hope you all had a Merry Christmas and happy holidays! We had a great couple of days. Although we were sad that our annual pajama and pancake breakfast didn’t happen, we had two amazing days of friends, family, food and LOVE! I am feeling physically stronger everyday. It’s amazing that my surgery was a little over 4 weeks ago!

We have been waiting for more results from Dana Farber and Mass General. To make a long story very short, chemo starts this Tuesday. The consensus among both teams is that chemo is the most aggressive path and recommended. I had a choice but both oncologists leaned toward this path for many reasons…I heard nothing after they said it was because I was so young;)

So as far as we know right now, it’s four rounds of chemo, 3 weeks apart. I have been told that there is a chance we will go for another 4 rounds after that but I will cross that bridge when I come to it. Right now, eye on the prize means early/mid March.

My focus is staying healthy and keeping my family on track. Chloe and Jack are not even mid way thru their basketball seasons and Matt is working on some exciting projects and training for his 10th boston marathon with Dana Farber Marathon Challenge.

I miss teaching and practicing yoga. I miss being around that amazingly uplifting community but I have felt every prayer, good wish and love sent my way. Lots of lessons learned by me over these past few months and I plan on sharing all the good stuff!

I am wishing you all HEALTH AND HAPPINESS IN 2015 and beyond!

Happy happy new year!

Love Carlene

By |December 26th, 2014|Yoga|0 Comments|

Planning and Gratitude

I just wanted to check in and let you know how things are going. Yesterday, I had my third plastic surgery post op appointment. I am finally rid of all the drains and tubes which is a huge relief. Each time I see the plastic sugeon, she gives a little fill to the expander between my ribs and pec muscles, AKA my new boobs. It is an uncomfortabe process and today I feel like someone beat me up but each time is a baby step to being finished.

The past two months have been a lot of waiting. It has been three weeks since my surgery and next Wednesday Matt and I will be in Boston all day to meet with my doctor at Dana Farber and to meet with all my doctors at Mass General. It is a full day and we are hoping and planning to have all the information we need to know how we will move forward. I am a girl that likes to have and plan and be acting on it!

I have had a few trips out which is nice and exhausting. I have been to one of Jack’s basketball games and I am hoping to get to Chloe’s game tonight. My step-mother and I took a trip to Target to get the house stocked up on all the necessities which entailed me leaning on the cart bossing her around:) She was a good sport and is a huge support to me. My father and Liz will be leaving on Wednesday. Their presence and around the clock help has made this process so much smoother for Matt, Chloe, Jack, and Me! My father is officially Chloe and Jack’s “driver”. He can’t believe the amount of mileage we cover in a week! Thanks to my crazy neighbors and my aunt Joanne and uncle Ralph visiting, the outside of the house is as festive as ever. I so appreciate that for Chloe and Jack!

Gratitude is overflowing over here for the amazing things that have been done for us over these past few weeks. I may have been a little cloudy in those first few days/weeks:) but I am just so thankful for the food, decorations, books, gifts but most importantly the words…cards, texts, emails, phone messages, Facebook… all of it!

Love Carlene

By |December 12th, 2014|Yoga|0 Comments|

Thankful Thanksgiving

Thank you for the prayers and words of encouragement as I went into surgery last week. All went as planned with the happy surprise of no issues with my lymph nodes! I ended up just staying one night in the hospital and was more than ready to get home that next day once my pain medication was under control. I feel like I’ve been in a time warp! Anyway, there is not much to report except that i am well taken care of and just resting to heal. I couldnt possibly list all the extraordinary things family, friends and complete strangers have done to make this road a little smoother. Matt continues to be the most attentive, loving guy, helping me in each moment! This experience is sure to change me forever! We are all trying to patiently wait for word on chemo / radiation. The surgeon said 7-10 working days until I will hear. With Thanksgiving, that brings it well into next week or beyond. I will leave you with a really cool story/example of a strangers kindness.
Last week I came home from one of Jack’s basketball practices to a huge package outside the garage. I opened it to find a personal note and a kick ass pair of red cowboy boots. The note was from a woman, Margaret Burns Vap. She has a yoga and horses retreat in Big Sky Montana. Turns out you can nominate anyone going through breast cancer treatment to get a pair of boots to “kick cancer”. My friend Aimee nominated me and I wore those boots until they made me take them off the day of my surgery. If you love horses and yoga, check out her website.

548b0d8cca16b4231f50d01c
Thanksgiving day just know that I will be saying a special prayer for each one of you and a wishing that anyone going through some sort of health challenge will feel the same love and care that I feel each moment!
Happy Thanksgiving!
Love Carlene

By |November 24th, 2014|Yoga|0 Comments|

Loss for words…not really

So, the girl with the blog, yoga website, yoga teacher is totally at a loss for words. You’d think this experience would have me bubbling over with yoga wisdom but I’m feeling pretty quiet right now. My surgery is scheduled for next Thursday, Nov 20. The fun begins at 9:30am but the surgery doesn’t begin until 11:45am at Mass General. It is supposed to last approx 5 hours and Matt will be at the hospital with me. I can’t begin to explain how much all your support and love mean to me. I just want to look each of you in the eye and thank you for the love and support just leading up to this! I feel like there are a lot of questions that will be answered over the next few weeks… chemo, radiation, healing from surgery. I know that I couldn’t be in a better place, with the best doctors, support system at home, etc. Matt has done absolutely everything to make sure I am in the best place physically and mentally for surgery and whatever comes from it…I couldn’t imagine a more supportive, loving, positive, focused partner to have in this!

One thing that I have thought about a lot over these past few weeks is, how do people do this that don’t have the support I do? How do single parents go thru this on their own? How do they keep life normal for their kids and hide the toll it takes without the help of a partner, family or friends close?? If you’ve known Matt and I for any amount of time, you know how important cancer research, Dana Farber, and supporting strong focused organizations is to us. I can tell you that we are already working on our own way to answer some of those questions I have been thinking about…stay tuned:)

I think that’s all I have right now. I hope that if you include me in your prayers you will include Matt, Chloe, Jack and my whole family. I am keeping very busy over the next six days so that will be a good thing. Lots of plans for this weekend and sports during the week to keep up with. All the activity will be a good thing, just keeping everyone on track. So many wonderful things have happened to me over the past few weeks… family, friends and complete strangers have reached out in their own way to let me know they are with me. I think at this point, connection is the gift and I will keep on receiving that connection and building my healing from there!

Love, Carlene

By |November 13th, 2014|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

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