Clare’s One Year Surgery Anniversary

 

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My one year anniversary of my double mastectomy and reconstruction surgery is today. In some ways the time has flown by…in other ways… it’s been the longest and most difficult year of my entire life.  I’m happy to report I’m healthy and strong and free of cancer. My reconstruction and recovery was deemed “amazing” by my doctors. I’m deeply grateful for my health and the massive support and love my family and I have received in the past year. It’s mind blowing. I know so many friends have held me and my family in their heart and sent us prayers and good wishes.

I stopped by my daughter’s pediatrician office last week to drop off some Oh Baby! Fitness cards. The front desk assistant, Jackie, jumped up and asked me how I was doing… telling me she’d just been thinking about me the day before. It had been almost a year since I’d visited the office. Why was she thinking of me, I asked? She said I’d just popped into her head and she was actually going to call me to check in. I hugged her and went back to the car and cried… tears of gratitude. It is ABSOLUTELY AMAZING to live in a community of caring people. I have moments like this often… where people take the time to send a note, a text, or seek me out to check in and say they’ve been thinking about me and my family.  It makes such a difference!

This past year has been challenging beyond belief. My diagnosis. Surgery. Mom’s diagnosis of brain cancer on Christmas Eve…just 6 weeks after my surgery. Then on January 3rd, Sofi’s appendix ruptured and we spent a week in the hospital. On January 16th, Mom and Dad moved to Atlanta for four months so Mom could receive treatment at Piedmont Hospital. Mom and I shared the same oncologist. Mom celebrated her 75th birthday in Atlanta and half of Jackson County came down from North Carolina to celebrate. We have been constantly supported by our friends and community through this journey. Meals, gifts, visits. It’s overwhelmingly beautiful. I cannot describe what it’s like to be on the receiving end of such love. I seriously can’t find the words… but know that you’ve made the difference in me being able to push forward each day. I’m pretty sure I would have been in the fetal position in a corner if it hadn’t been for all of you.

Special shoutouts to my family: Jay, for his quiet, calm, unwavering love and tireless support. Sofi: my rock who always has a hug ready and knows the right thing to say. My Mom and Dad who dropped everything to come and stay with me and help with my recovery. Sister Hayley, who took leave from her job in Seattle to nurse me back to health, and brother Charlie, sister-in-law Bobbi and nephew Max who kept in constant touch all the way from Kenya.

It’s been a unique situation in my battle with breast cancer. Normally, I would have been celebrating how well I’ve done this past year. I’d probably have been more concerned about the cancer coming back. But I haven’t had time to think about any of that… I’ve been totally immersed in supporting my Mom and Dad.

This time with Mom has been precious. The moments I’ve spent with Mom, Dad, Jay, Sofi, Charlie and Hayley has been golden.  I think we did everything we could to help my Mom fight this brain cancer… the best doctors, treatment and care possible. Glioblastoma is an incredibly rare and deadly disease. Through it all, we’ve supported each other and shown love. I’m extremely proud of that.

I should be thrilled to celebrate this one year anniversary, but in truth, my heart is breaking. It’s mind-boggling to me that my mother, who was so vital during the time of my diagnosis and recovery – going to doctor’s appointments with me… listening carefully to the options I had… cooking dinners…getting up in the middle of the night to give me medications… the list goes on – is now in hospice at home, completely reliant on others for her day-to-day needs.

As many have said, Veronica, who helped SO MANY people during her lifetime, would be glad that one of her last causes was helping her daughter navigate her breast cancer journey. I’ve treasured the time I’ve gotten to spend with my Mom, caring for her in return. Bathing her, rubbing her feet, feeding her… it’s been intimate and close…something not all of us get to do for our mothers.

Throughout my life, my parents helped teach me to not take anything for granted… to jump at opportunities… to help others… to challenge myself and to love openly. Many people say that cancer teaches them how to do these things. I didn’t feel like I needed cancer to teach me that lesson because my Mom and Dad taught me how to live life well.

What I did learn from this experience is how to accept help. I was pretty much used to doing things on my own and pitching in to help others… I didn’t know how to ask for or accept help. This is what cancer taught me. It’s been beautiful to watch the stream of friends visiting my Mom and Dad in these last months. You almost need a tour director to handle all the food, flowers, cards and visitors. It’s extraordinary. As one friend said: “Veronica taught us how to live and now she’s teaching us how to die.” It’s true. She is surrounded by love. There is zero animosity. It’s powerful to be a part of.

I feel fortunate that I’ve experienced that love too in my own challenge with breast cancer. In these crazy times of hate, politics and racism, I hold on to this strong community we have and the love that washes over us daily. I encourage you to take the time to reach out to your friends in need… to say you love them…to do something kind. My family has been the direct recipient of this strong love and I’m here to testify… it’s life-changing.

Thank you, my village.

I love you.

Clare

The Best Gift

Deeply touching article in Sunday’s AJC by friend and columnist, Daryn Kagan.

Read this article and check out other great stories and writing at DarynKagan.com


 

This is a “Thank You” note to my friend, Clare.

Clare, who has delivered the best gift this holiday season.

A gift for me.

A gift for you.

Clare, which rhymes with “Share.”

Clare who’s life has changed forever.

That’s what she’s sharing.

And boy, has she shared.

The amazing and generous Clare with her husband, Jay, and daughter, Sofi. What a gift!

Shared with her friends and Facebook community the hugest shock of her life.

That routine mammogram, the one she got just because she should, it showed a lump.

A lump she hadn’t felt.

Oh yes, we certainly are in that era where people can over share.

Not Clare.

She’s hit it just right.

As a fellow former CNN’er, she knows she has a bunch of journalists in her tribe.

Here’s the thing about that—we like to know stuff.

So when she describes the way doctors were able to do a double mastectomy and rebuild her breasts from tummy fat all in one operation, we, her people, are thinking, “They can do that? Who knew? That’s pretty cool.”

And weird and different and horrifying.

That’s what Clare shares.

“My breasts are way higher than they should be at 48 and I have a flat tummy,” she wrote. “It doesn’t look like me..but then it kind of does.”

I mean, if you have to have a souvenir from cancer surgery, why not perkier boobs and a flat tummy?

Which is not to make light of what she’s been through.

I’ve been to war with Clare.

Literally, I mean been to war.

We both covered the start of the Iraq war.

So I know she’s someone who can, who insists, who finds a moment to smile through the most horrifying of circumstances.

This brings me to the best part of Clare’s gift.

Of her sharing.

She will tell you huge parts of this diagnosis and surgery have sucked.

Capital “S” sucked.

Big time.

There was no holding back on a recent blog post where she shared this has been, “The most traumatic and horrific event I’ve ever been through.”

I love her most for that.

For that kind of sharing.

Not because I wish her a second of suffering.

Rather, because sometimes stuff is hard.

Really hard.

Absurdly, obnoxiously, 1000 on a scale of 1-10 hard.

When you share that, when someone strong and positive, upbeat like Clare shares that, I can exhale.

Blowing out a bit of the façade that life is easy.

Sometimes, it’s not.

But you know that.

So, to you, who is holding your breath as you read this, who has some really hard challenges this holiday season—your own health crisis, first time without the person you love, dreading meeting your father’s new girlfriend, a broken heart, cold toes.

Whatever.

I’m sending you this gift from Clare.

An invitation to let out a giant exhale.

A giant exhale.

Go ahead and do it.

It’s hard this year.

Some years are.

And that’s okay.

Okay to say.

Okay to share.

Just ask Clare.

Home Alone

 

My Mom and Dad just left after being here for a month. 🙁  I totally bawled like a baby as they were leaving.  I’m going to miss them soooo much. Getting to spend time like that with your parents is incredibly rare and special. Their love, support and caring was indispensable and absolutely integral to my healing. I’m blessed beyond measure.

I’m 4 weeks out from surgery and happy to report I’m starting to feel human again.  I’m still moving slowly and have hypersensitivity and numbness in numerous places (my breasts, arm and abdomen) but I’m mobile, off meds and able to do for myself for the most part. I try not to lift anything over 5 pounds, and I can’t reach anything on the top shelf yet..  but I can wash my hair, drive and go for mile long walks and short shopping trips. I’m totally knackered by 9pm and in bed. I’ve been able to get more sleep at night.. clocking 8 hours last night! Starting to feel like my old self. Not all the way there yet, but I can see such a tremendous difference in a short time. It’s mind-blowing how the body heals.

I met with my oncologist last week for the first time. He prescribed Tamoxifen (a hormone therapy that blocks estrogen in the body). I start that on December 1st. He also prescribed Lupron shots monthly. I won’t start that until January 1st. Lupron stops the ovaries from functioning, and thus stops estrogen production in the body. I will immediately enter menopause. I’m not gonna lie. I’m nervous about it, but I had estrogen positive cancer. Since I had a lymph node that tested positive for cancer, it means rogue cells *could* have gotten out into my body. Cancer could come back in the liver, lungs or bones.  It’s unlikely, but the best insurance policy against recurrence is to cut the estrogen in my body to zero.  I’m 48 years old and was probably close to menopause in the next couple of years anyway. I’m thrilled that my oncologist is willing to let me take Tamoxifen alone for a month to see how it affects me.. and then add the Lupron in January. That way, if I have any adverse effects from the Tamoxifen, I can report that and know it’s different from the onslaught of menopause.  If I really have a fit going into menopause after the Lupron shots, we can stop the monthly injections and rethink.  I feel like it’s a good plan I’m comfortable with.

I have an appointment with the physical therapist on December 17th. That’s the 6 week mark from surgery. I can honestly say that is the ONLY appointment I’m really looking forward to. I can’t wait to get started on getting back to exercise, mobility and seeing how much of the pain and numbness I can get rid of. The PT said it would be a “low and slow” return to exercise, but that I could expect to return to my life I knew before the cancer diagnosis. I’m hanging on to that quote fiercely.

In the mean time, I’m back to work. Being home alone was good for concentration. I got a lot accomplished. It feels really good to be back in the real world. Talking to customers, facility owners and my business partner!

I posted lots of pictures on Facebook in the last week, and I wanted to make sure to share them here. I’ll keep posting if there’s news to report. Overall, I’m one lucky girl. I’m counting my blessings and continue to be thankful for all the love and support shown to me and my family during this scary time. Thank you!

Team SchexNix took 2nd place in Palookaville Trivia
Team SchexNix took 2nd place in Palookaville Trivia
palookaville dad and clare
Beepaw and Sofi knew all the answers.

 

palookaville mom and sofi
Grammy Bear and Sofi Bean had some serious fun
Last Drain OUT! I present my cleavage and my first glass of wine in weeks!
Burning drain logs (I HATED those damn things!)
Burning drain logs (I HATED those damn things!)
Thankful!
Thankful!

Finding My Way

motto girl

I am long overdue for an update. After the good news from my last post, I’ve been doing the hard work of recovery.  I’ve passed the three week mark. I still have 1 abdominal drain remaining and, as of yesterday, have cut out all meds except Advil. I hope to have the drain out by Wednesday at the latest and have a glass of wine with my Thanksgiving dinner. It is AMAZING how far I’ve come in three short weeks.

A quick summation of my journey thus far:

Surgery: The most traumatic and horrific event I’ve ever been through. The emotional and physical pain was intense.. and my family was put through the wringer. I will never look at someone facing surgery or a health crisis the same way again.

Pain Meds: They’re incredible, and once we fine-tuned mine, I had a lot of relief. My pain initially manifested as nausea which was AWFUL. If I didn’t take the pain meds at regular intervals, I’d be crippled by pain.. and it would just come out of nowhere. When you’re in that moment, it’s unfathomable to think there’s a time when you won’t hurt.. and that the pain will end. Terrifying.  I’ve been in a drug fog for the last 3 weeks. It feels like I’m only now just re-emerging. I missed Halloween. Fall colors. And a lot of rain, I hear! 🙂

I’m experiencing a lot of numbness in my chest, abdomen (along my hip-to-hip incision) and in my right arm (where 30 lymph nodes were taken). It’s such a strange experience trying to figure out if the pain is going to last..? Is the feeling ever going to come back..? Am I ever going to be able to return to the physical and psychological state I was in before the cancer and surgery??? What new challenges await? Will tamoxifen (the recommended hormone therapy I may be on for years) cause mood disorders, depression and immediate menopause? Will I have to deal with lymphedema outbreaks for the rest of my life? Will it limit my exercise? The what if’s are endless it seems and make me fearful. I am NOT a fearful person, so this flurry of concerns is hard to get past on a daily basis.

I’m trying to focus on being whole again. I’m getting used to my new body. And reminding myself I’m loved and safe. Seems pretty basic, but these simple steps are taking up most of my waking hours.

New Body: Getting used to my new body is my biggest focus. My breasts are way higher than they should be at 48 and I have a flat tummy. It doesn’t look like me.. but then it kind of does. SO STRANGE. I found that rubbing lotion into my chest and tummy and arms not only helps reduce the painful hyper-sensitivity most people experience after mastectomy and reconstruction.. it’s also helping me get acquainted with my body. My breasts still look like my old ones (the freckles and moles are still there..) but I don’t have nipples and I have a lot of stitches. Since my breast reconstruction used my abdominal tissue and fat instead of implants, my breasts are pretty soft, but still swollen and hard in places. They feel kind of alien in some ways because parts are still numb. I’m not sure if feeling will come back everywhere when the swelling decreases or if I’ll just have to get used to the numbness. Wearing a seatbelt is strange. I’m aware of the pressure, in a dull kind of way.

Re-entering Real World: I had a lot of re-entry experiences over the weekend. I drove for the first time. I went to a birthday party for a quick appearance. I went to dinner at a friend’s house. And now, I’m sitting in my house alone for the first time in 3 weeks. It feels good to be considered well enough to be on my own again. I start back to work today. It will be a slow week, so a good time to get back up to speed.

Thanks and Reflection: My family has taken such good care of me in the last weeks. I’m sure I wouldn’t have had such quick healing if it weren’t for them. My sister, Hayley, was my own personal nurse for 2 weeks, and my Mom and Dad and Jay were doting caregivers. I think having family care for me made all the difference. They were all over me not to overdo. They gave me medications at the specified times.. delivered in a pill cap like nurses do. Latex gloves were donned, drains were stripped, shots were administered. It was a professional operation. I called them my “Tit Crew”.. (get it..? Like Pit Crew?) My family members were selfless in every way. I am deeply thankful. And so glad they may not have to worry much longer as I am healing well.

I’m also thankful for my early diagnosis, my medical team, my family and friends and vast support system. Not having to have chemo or radiation is incredibly lucky.  I know I will be thoroughly happy with the results of my surgery in the end. Right now, I’m still in shock.. and just finding my way. Reminding myself, “I can. I will. I am positive. I’m strong.” And adding to my mantra these words: “I am whole. I am safe. I am loved. I am grateful.”

Love to you and yours this holiday season. Thank you for the amazing outpouring of support and kindness you’ve shown me and my family. It is precious beyond words.

xx

Clare

 

Even MORE Good News! No Chemo!

2nd walk

Whoo hoo! More good news! Got a call from my doctor yesterday. They said my Oncotype DX test came back on my tumor and I got a low score (11).  The test (that has a pretty good track record) looks for the possibility of recurrence and whether chemo will reduce that risk even further. My low score means NO CHEMO NEEDED!

I am so thankful that I can continue on with my healing. This was a massive surgery and today marks week 2 in recovery. I’m getting better and stronger every day. My stitches are healing beautifully. I’m standing up straighter. I even slept in my own bed last night!  My two remaining drains come out Monday, and then I can start cutting back on pain meds. My sister, otherwise known as the best nurse on the planet, goes home Monday, and the recliner goes back to the rental place. That will be a big day in starting my new normal.

I still wear out pretty easily, and am in bed by 8:30pm every night..and I’m still pretty sore…  but otherwise, I’m still the same old Clare (maybe a little more loopy, but my family finds it entertaining for now! ha!)

Here’s to no chemo and more healing. Best belated birthday gift ever!

 

48th Birthday Booby Cake
48th Birthday Booby Cake
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Limerick from Dad for my 48th Birthday

Thankful for 48 Years

As I settle into my recliner at 830 pm on the eve of my 48th birthday, I’m pretty darn thankful for the life I have.

It’s been an incredibly eventful year:

Jay and I celebrated our 15th wedding anniversary.

We took two trips to our favorite beach, St. George Island, FL.

My family traveled to England and Kenya on the true trip of a lifetime to visit my brother and his family.

We went on our first safari in the Masai Mara… totally unforgettable experience!

My company, Oh Baby! Fitness, turned 10 years old, and we launched a new website that allows us to have classes and licensees all over the country.

My business partner moved to Seattle and had a baby girl, Beatrice.

Sofi started middle school as a sixth grader and dyed her hair blue.

I went to my 30th high school reunion.

And last, I was diagnosed with stage 2 breast cancer and had a double mastectomy and reconstructive surgery.

Lordy! That’s a LOT! Life is full and busy and ever-changing.

Today, we went for a walk in the sunshine. After umpteen days of rain and 11 days out from my surgery, it was absolutely glorious!!

I got to walk with my sister who’s  been a fabulous caregiver.

clare and hayley

And behind these cuties who’ve been married for 50+ years.

mom and dad

family sunny day

It was a pretty glorious day. And then we ate dinner together as a family and dined on food given to us by dear friends who are caring for us through this challenge. We’ve had visitors stop by all day giving hugs, flowers, food and kind words.

I realize my life is about as perfect as it gets. And I’ve known it all along. I truly don’t take anything for granted. We have our home, our family, friends, neighbors, community, good schools, jobs we love, access to health care, sunshine,  and our health.

And I really do have my health. I’m getting stronger every day. Best birthday gift ever to wake up and get to do it all over again. Weather forecast calls for more sunshine. Yippee!

Thankful. That’s me. Happy 48!!

Healers and the Spoken Word

We had my one-week post op appointment last night at 7pm. We drove to the Buckhead office of Dr. Ma for a checkup. I was totally nervous about making the trip because it was late at night (usually, I’m OUT FOR THE COUNT at 8pm).. and I knew there were several speed bumps between my house and the doc’s office (OUCH), and I was hoping to have a few of the 5 drains I’d had inserted after surgery removed… and I knew it was going to hurt.

We got to the office with minimum bumps (Yay, for my little Leaf.. it’s such a smooth ride). The doctors and nurses were so impressed with my recovery.  My healing looked great. Each and every person told me how beautiful I am.  They decided I could have THREE drains removed!! This is huge because the drains are really disgusting… there is a hole in your body (for the three that were removed Friday, the hole was under my arm for the breasts to drain fluid and blood). Any time you remove tissue, you have to insert a drain so the body can readjust to the space that’s left. Some people make more fluid than others. There is a long tube coming out of the hole in your body that allows your fluid to move into a bulb. The bulb fills up with fluid and has to be drained three times a day. The rest of the time, they’re pinned to your shirt front. So you walk around with tons of tubes and bulbs flapping around on your body. It is EXTREMELY uncomfortable and beyond yucky.

So now, I’m down to only two drains.. these two come out of my hips and allow my abdomen to drain. There’s more fluid in these because of gravity, and they took a lot of abdominal tissue out. The doctors are pretty optimistic I’ll have the abdominal drains out by Monday!!! They had told me to expect the breast drains for 2 weeks and the abdominal drains for 3-4 weeks.. so this progress is HUGE.

Hearing the doctors say my healing was amazing and that my drains were coming out in record time did so much to boost my spirits. The spoken word is so powerful. I was floating on air last night and slept soundly and comfortably. I’ve felt great today.

first walk

I went for my first long walk today with Mom and Hayley and Sofi and visited neighbors Patty and Daniel and their grandson Charlie.  Charlie is 19 months old and was super tickled to see blue-haired Sofi and did a little dance of excitement for her and offered her one of the cars he was clutching to hold. He figured out he could run and slide on the wood floors and laughed a big belly laugh. It was the sweetest sound ever.

My neighbors have put pink ribbons in their yards to show support for me and my family. It’s absolutely humbling to experience all the love of my neighborhood.

pink ribbon shea pink ribbon harry pink bow

I am so unbelievably grateful for the support of my family. My sister, Hayley, is a nurse and flew in from Seattle to spend 2 weeks with me, emptying my drains and giving me my meds and shots. I don’t know how people handle this without someone with medical expertise.  Her confidence and tireless care has been incredible and really calming too.

recovery

Jay has been oh so wonderful in administering back rubs, foot rubs and getting in the shower with me and washing my hair. I just read all his updates he made to the blog while I was unable to do anything but try to make it to the next hour. Such sweet missives. He’s such a great man.

Sofi just returned from the Waldorf Festival with a natural deodorant that she spent her own money on. She wanted us both to try it out. She continues to do thoughtful things every day that astound me.

And lastly, my Mom and Dad. When you go through serious surgery, you always want your Mommy and Daddy nearby. They have been patient and loving and have assured me constantly that they’ll be here for as long as we need.  Gulp. That’s so incredible to have that worry alleviated.

clare and mom

A year ago, I was finishing my first half marathon in Savannah. I’d trained with some girlfriends I work out with during the week. Today, they ran the half again, and each wore a pin with my initial on it to so I could be there with them. It’s pretty amazing to have such special friends.

pins savannah 2015

All of these people: doctors, family, neighbors, friends are my healers.  They help me stay positive and strong.  I’m so blessed. Thanks for being there for me.

xx

Clare

 

Excellent News! Only One!

cancer free

Just got a call from the doctor. The pathology is back on my lymph nodes that were removed in surgery. We were told that the sentinel node tested positive for cancer and because of that, they removed all the remaining nodes in the right arm.

We decided not to tell anyone until we had the pathology back, but got GREAT news today we’re excited to share.

They removed 30 lymph nodes from my right arm and ONLY the sentinel node tested positive for cancer!! It was a small spread too, only 9mm.

The breast tumor at its largest point was 3.9 cm, and is Stage 2B.

When they extracted the tumor, all the surrounding tissue was cancer free. Good healthy margins!!

That means NO RADIATION!!

My tumor will now go off for an Oncotype DX test. This test looks at 21 genes in the tumor that are specific to my cancer and how well each would respond to chemo to prevent recurrence.

There’s a very good chance I may not have to do any chemo at all. That’s what we’re praying for. But even if I have to do chemo, my cancer is totally curable. That’s a quote from my doctor that I’m hanging onto fiercely.  So incredibly happy and relieved. I wanted to share the good news with my village as soon as I could. Your constant flow of love and support has been epic and oh so appreciated.

Love you all!

I can. I will. I’m strong. I’m positive.

xx

Clare

 

I Am Full of Wonder (10/28/15)

I’ve been attending yoga classes at my favorite workout place, FitWit, over the past several months. Our instructor, Valentina,​ has the world’s best playlist to accompany her yoga classes. Every once in a while, she plays this song “Wonder” by Emeli Sande.

The lyrics strike me to the core:

“I can beat the night, I’m not afraid of thunder
I am full of light, I am full of wonder.

Whoa, oh I ain’t falling under
Whoa, oh I am full of wonder

Though our feet might ache, the world’s upon our shoulders
No way we goin’ break, ’cause we are full of wonder

Whoa, oh we ain’t falling under
Whoa, oh we are full of wonder

This light is contagious, go, go tell your neighbors
Just reach out and pass it on, ooh yeah”

 

I liked the song before I was diagnosed with breast cancer, but now, it’s my personal theme song. Every time I hear it, I get stronger.

For me, the song speaks to me sharing my story.  I’ve had sooooo many notes, texts, emails and phone calls of support and love because I decided to share what I’m going through.

Sharing my light has made me stronger. Every note, every hug, every kindness has helped. I feel every prayer and good vibe sent my way. It’s incredibly powerful.

If I hadn’t shared my story, I might have missed out on all this amazing support and energy. Thanks to each of you for that.

WE are full of light! WE are full of wonder!

This light is contagious, go, go tell your neighbors
Just reach out and pass it on!

WE AIN’T FALLING UNDER!

My surgery is Friday, October 30th at 7:30am. It will last for 8-10 hours. Jay​ will post updates here and on my new blog: www.clareschex.com.

In the blog sidebar, you can sign up for updates via email too. Thanks to Nancy​ with Dabbled Studios​ for setting up my nifty blog. I have the most talented and wonderful friends!!

Girl Tribe (10/25/15)

girl tribe

I’m pretty sure I’m the luckiest girl on the planet tonight. I thought I was meeting a few girlfriends for dinner. Turns out 15 dear friends had planned a special evening. Each presented me with a bead they had carefully chosen. With it came a story of what it represented about our relationship, the healing properties of the stone, where it came from and why they chose it. All the beads will be made into a bracelet I can wear into surgery. An incredibly thoughtful and precious gift I know I will cherish forever. I am absolutely overwhelmed with love and gratitude.

bracelets

There wound up being enough beads/stones to create TWO bracelets. I am a profoundly grateful and feel oh so loved.