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
IMG_7154
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

 

Up and About

Clare’s been enjoying being a homebody. Though the whole hospital stay was nescessary and healthy, there’s no place like home, eh? She’s getting up and walking to table and facilities quite well. I even washed her hair last night (while wearing my swim trunks; no free shows, if I’d needed help). She felt so much fresher after the first shower.

She’s getting around to reading the Tons of well-wishes, cards and email. Thanks folks! We All rise with the abundant tide of your kind attentions and Love. -Jay

Feel Like a Whole New Person!

Hi all,
I’m headed home from the hospital in a few minutes. The surgery went great, and I am flying through recovery. I had a couple days of nausea at the beginning. Those days were rough. Turns out I don’t tolerate pain meds very well. But now I get an anti-nausea medicine every time I take a pain pill, and that seems to have done the trick in making me feel good enough to eat, drink and walk around the hospital. A huge thank you for all your prayers, the rides and meals my family has enjoyed, and the love you’ve given to all of us. It all has been amazing.

My doctors were such and incredible team. Dr. Barber, Dr. Boutros, Dr. Ma and Dr. Webb worked together carefully and thoughtfully to make sure every detail was accounted for. More importantly, each docter was extremely personal, caring and loving to me and my family. I can’t express what a difference that makes! Piedmont Hospital gave me stellar care. Their nursing staff are so gentle and kind.

A huge shout out to dear friend Lisa Landry who is an oncology nurse. She took the first night shift which I’m pretty sure is the worst shift ever because I was so nauseated that first day. She was instrumental in identifying I wasn’t doing well on pain meds.. And needed more anti-nausea meds and Xanax as well. I just couldn’t turn my brain off.

Hubby Jay has been with me almost the entire time. I think I’ve used up all my foot rubs and back scratch coupons for the next 20 years. He was tireless and oh so loving.

Mom and Dad have truly babied me, spoonfeeding me jello and brushing my hair. I’ve gotten to hear lots of stories on what I was like when I was a baby. Pretty neat!

Sister Hayley has arrived and is in full nurse mode. She’s competent and funny as hell. I know these next two weeks will go swimmingly now that she’s here.

Sofi came to visit and showered me in love and compliments: “you look beautiful, Mom.” She updated me on all the Halloween excitement I missed!

This was my Halloween costume for 2015, compliments of
My cousin Suzie Ditto and Kolb clan. Wish I could have trick-or-treated in it. Instead, I got to freak out the nurses and make them laugh.

I’m so glad to be on the other side of this surgery. Will keep you updated as things go.

Xx
Clare

Up and Around (a bit)

Clare had a better rest last night. Getting her meds balanced early, and after her maiden long walk, she was sleeping deeply for 2 1/2 hours. Then, more intermittent good rest throughout the night. She’s just had another walk this AM, and is now in her new (non-ICU) room!
The ICU staff had never seen a Dr Ma patient walk around the unit as Clare has. We may have to slow her down.

Moving Experience

Clare took a walk around the perimeter of the Intensive Care Unit this afternoon! The staff are ‘not used to seeing this kind of behavior in the ICU’. Moving got her blood and spirits up for the best evening yet. She was actually considering another walk this evening, but maybe keeping the lights low and stomach settled will let her slip into more rest. No need to push it.

But going into this surgery, she was in very good shape from regular exercise, four days a week. She could do a six minute plank! ( I’m lucky to do a minute and a half.)

So the lights are low and she rests. Your prayers and best wishes surround her. She knows they do.

Thanks,
Jay Schexnyder
TinRoosterMedia
Jay@tinroostermedia.com
404-538-8871

Progress

I spent the night with Clare, 6p-6am. It’s been a challenge resting, because she’s had a warm air-filled pad on her chest, ever since surgery Friday (it’s like a small pool float). She needed a cold washrag-dabbing regularly. Her circulation is doing very well (tiny arteries in her chest had to be reattached in surgery; really amazing work). So, at 5am, Dr Ma ok’d removing the hot pad, and Clare slept so much better; about 90 min straight through!

Last night, she stepped about two feet to a chair for supper, and spent about 45 min there. A bit more walking is scheduled for today. Many thanks for all well-wishes and prayers! -Jay