Speak in Whispers: Linda Lancaster Carey

Linda Lancaster Carey of The Tutu Project shares her best advice on how gratitude will get you through a breast cancer diagnosis.

Linda Lancaster Carey says that she’s been on this planet for 53 years, although her husband would argue that it’s actually 54. She is adamant that she’s not 54 until she’s 54, which will be in November. She keeps busy with several jobs. She and her husband have a commercial photography business, and The Tutu Project falls under this umbrella. She also runs a non-profit that supports women and men living with breast cancer. They have no children but have a lovely, lovely dog named Sofie. Linda’s home is in a small town in New Jersey but her heart is still in New York! Art is a great love and one that she doesn’t make enough time for. She likes to write, hike, bike, go to movies, travel, and spending time with family and friends. Learning – she likes this, too. At the top of the list and in some way covers all the rest, she LOVES living. Not to be confused with being alive.

NAME

Linda Lancaster Carey

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed on December 29th, 2003 with Her2+ breast cancer. The cancer metastasized to my liver in December 2006. I don’t remember the exact date but I know just where I was standing. It was late afternoon, I had just delivered a project to a client when I received the call from my nurse specialist. The lobby of the building was cold marble and a cavernous space, at that moment I was glad that New Yorkers ignore so much as I was sobbing in the corner. 

HOW DID YOU FIND OUT YOU HAD BREAST CANCER?

In the shower when I did my monthly breast exam. It caught my breath (can a lump really do this?) and told no one for three days. Perhaps somewhere in my freaked out brain I thought that if I didn’t say anything it wouldn’t be anything. Having had a cyst removed several years back, I knew in my heart that this lump was different. I’ve never told anyone this. 

TELL US YOUR REACTION TO THE DIAGNOSIS.

Freaked out, cried, moved into shock and then pulled out my notebook and started making a plan with the tremendous support of my family and friends. I thought about death in the dark of the night. I wrote in my journal often asking myself if this meant I was going to die. When the sun rose in the sky I focused on living, learning the language of cancer and prepared myself, as much as I could, to the idea of having one breast. 

WHAT WAS YOUR TREATMENT PLAN?

It began as a mastectomy, followed by six months of chemotherapy followed by one year of a clinical trial and somewhere in there, 33 treatments of radiation. 

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

I went into early menopause, no crying on my part although I probably scared my husband a time or two. Loss of libido, weight gain-no fun. The second time around the chemo destroyed my feet, not so good for someone living in Brooklyn.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

Because I’ve been so open with my journey, I need to say – I hate that question. In the beginning of this mess I was asked by so many people “now that you have cancer what are you going to do with your life?'”. This was asked in the context of the conversation that I should be planning on saving the world or something along those lines. A slight exaggeration, but this is how I heard it. That’s a LOT of pressure for someone that just had a breast removed, was blasted with toxins and probably still glowed from the radiation. After I settled down I knew that I’d probably want to do something and kept the question alive hoping that I’d recognize the answer when it came walking by. It did – in the form of The Tutu Project. This has opened my life and has given me a platform to share hope and hopefully inspire a few women or men that there is living after and with cancer.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

I struggled with the stupid things that people say. I knew that it generally stemmed from not knowing what to say but some days I didn’t want to give them that out. I went into therapy, this helped. I also joined a writing group at the cancer center. One of my pieces was used, along with one other woman, and became a short play that performed several times for nurses, physicians and med students. The goal of this was to teach them how to speak to people diagnosed with cancer. 

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

Each day put your feet on the floor. When the left foot hits the floor whisper “thank” and when your right foot hits the floor, whisper “you.”

You can find more from Linda at The Tutu Project, The Carey Foundation and Twitter.

Linda Lancaster Carey of The Tutu Project shares her best advice on how gratitude will get you through a breast cancer diagnosis. 

Photo source:

“This Is My Gift To You” by Hamed Saber is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of  Linda Lancaster Carey

Alternative Therapies: Lisa Marie Ives

Lisa Marie Ives gives her best tips for alternative therapies and supplements to help during breast cancer treatment.

Lisa Marie Ives is 42 from Virginia Beach, Virginia. She’s a SAHM to one 3 year old boy. She enjoys being his mom and her version of pre home schooling. She loves fine dining and wine but no longer a connoisseur. She gets lucky with her own madness infrequently in the kitchen and any bottle under $8 does just fine.

NAME

Lisa Marie Ives

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

Diagnosed 10 months ago (1 month after my birthday…gonna be 42 AGAIN)

HOW DID YOU FIND OUT?

3D mammo and a call back. 1, 2 and 3 biopsies (2&3 with an MRI).

TELL US YOUR REACTION.

I always knew it would happen subconsciously as it is rampant paternally…the realization hurt.

WHAT WAS YOUR TREATMENT PLAN?

Chemo sucked canal water. I chose pre-op treatment hoping to avoid surgery…well…going under this Monday (late September) anyway, even though the tumors discipated…mastectomy right side.

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

One kid and done fortunately. Sex…phhh what!? I am gaining weight from my Herceptin treatment, which is driving me bat shit crazier than a womanly cycle ever has. 

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING MORE?

Live! I always have…and sometimes large…but I have a little man that I am responsible for and for a very long time!

I hope to prevent anyone else from suffering with what cancer is responsible for in so many ways, if possible.

WHAT WERE YOUR BIGGEST STRUGGLES AND HOW DID YOU MANAGE THOSE?

The limitations I had through chemo and the life it stole from me with my child is my biggest complaint. Chemo was a hurtful hell. My sanity is on edge with my upcoming surgery I was led to believe wouldn’t happen.

WHAT’S YOUR BEST PRESCRIPTION?

Essential oils and magnesium for personal help and a tad bit of well being…I swear! I found that essential peppermint oil aides better in the relief of headaches. nausea and spirit.  Lemon oil detoxes the liver (what a relief that is after the abuse of chemotherapy and this week alone with industrial strength pain killers!) Lavender oil truly does relax the mind.  Cypress oil is a miracle for circulation in ached joints (in my case, due to chemotherapy damage) Clove oil for the mouth pain chemo causes, as well as better dental hygiene. 

Lisa Marie Ives gives her best tips for alternative therapies and supplements to help during breast cancer treatment.

Photo source:

“Eucalyptus Oil” by Adam is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of Lisa Marie Ives

Hot Mama: Dyanne Dillon

Dyanne Dillon shares her best tips for dealing with hot flashes after breast cancer and Zoladex injections.

Dyanne Dillon says she feels like an eleven year old living in a 50-something body. She is a wife, mom, Pre-K teacher and a self-proclaimed Pollyanna. She blogs about her breast cancer experience and life thereafter at I Want Backsies, a name inspired by the children’s book A Bargain for Frances by Russell Hoban.

NAME

Dyanne Dillon

Read Dyanne’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

I had a bone density scan in May of this year after two years of monthly Zoladex injections and taking Arimidex daily, along with calcium and vitamin D supplements daily, and the results showed a 13% loss of bone density. I am now taking Fosamax once a week, with a whole new set of side effects, including bone pain in my legs and charlie horses, especially at night, in my legs and feet. The hip pain I have had from the Zoladex and Arimidex (more discomfort than pain, actually) has worsened since adding the Fosamax, especially after I sit for awhile. Once I walk around a bit and warm up my hips, I’m pretty good, but until that happens, I walk like my mother, meaning I walk like an 80 year old woman.

So, basically, the breast cancer has not been a problem since the bilateral mastectomy nearly two and a half years ago. Blood work is always fine, breast exams clear. But the side effects? Yeah, those are what are going to get me!

WHAT IS YOUR BEST PRESCRIPTION?

I began taking Brisdelle (paroxetine 7.5 mg) this spring, as prescribed by the nurse practitioner in my ob/gyn’s office, to help with hot flashes. I THINK it helps, but I couldn’t swear to it. With a coupon card and insurance, the medication costs $38 a month. It’s a lot of money just to help with hot flashes, but after an experiment wherein I didn’t take it for over two weeks, I’ve decided that i just might be worth that $38 after all. My friends and family were on the verge of taking up a collection to pay the $38 just so I would quit asking, “Is it hot in here, or is it just me?”

TELL US SOMETHING AWESOME.

I was in a store recently where a store employee stood at a table inside the front door and asked people coming in if they would like to donate to breast cancer. I know she didn’t realize what she was saying, but I just laughed and said, “I’ve already donated to breast cancer by donating both of my breasts. Maybe what you mean to say is would you like to donate to breast cancer RESEARCH?”
Find the funny in things that may not be funny. It’s good medicine. 

Dyanne Dillon shares her best tips for dealing with hot flashes after breast cancer and Zoladex injections.

 

Photo Source: “My Lovely Girlfriend” by dr/ Text added to original

Personal photo courtesy of Dyanne Dillon

Anything Is Possible: Mina Greenfield

Breast cancer survivor, Mina Greenfield, shares her best tips and advice for keeping your lashes and brows during chemotherapy.

Mina was still in the thick of treatment last year when she shared her breast cancer experience. I’ll never forgot the quote we used for her post. It was “Entertain the maybes” and I believe that philosophy should be applied to everyone’s life – cancer or not. Read on for the advice she’s sharing this year.

NAME

Mina Greenfield

Read Mina’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

I completed chemo in November of 2013. I had a month “off” (I went to NYC with my unimpaired immune system!) and completed radiation on February 21, 2014 (my mother’s birthday!). I’m now on Tamoxifen, but back to my “normal” energy level with a full head of hair.  

WHAT IS YOUR BEST PRESCRIPTION?

Only one? Can I share two?
1. Acupuncture – it helped greatly with the side effects of chemo and radiation.
2. Brian Joseph’s Lash and Brow gel. It’s pricey, but it kept my eyebrows and eyelashes (hanging on by a thread) mostly intact until the end of chemo.  

TELL US SOMETHING AWESOME.

I ran my first 5K two months after completing treatment.  

Mina writes at Cocktails and Chemo.

Breast cancer survivor, Mina Greenfield, shares her best tips and advice for keeping your lashes and brows during chemotherapy.

 

Photo Source: “I C U” by Walt Stoneburner is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of Mina Greenfield.

Model of Courage: Tracie Benjamin

Tracie-Benjamin

Tracie made a splash all over the internet and national TV last year after her boyfriend proposed on live television from the Susan G. Komen walk in Portland, Oregon. That video clip went viral and she and Ryan appeared on Portland’s local news, the front page of Yahoo! and The Rachel Ray Show. She updates us on her health and what project she’s been working on.

NAME

Tracie Benjamin

Read Tracie’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

I am now on Tamoxifen for 10 years! I finished chemo last October and began Tamoxifen last December.

WHAT IS YOUR BEST PRESCRIPTION?

Exercise daily! Even a 30 minute walk will make you feel better. Avoid hills as getting winded happens frequently! Not to mention, it will keep the weight off. Being so inactive with so many medications can make you gain weight and losing it after is not easy! Stay ahead of the game.

TELL US SOMETHING AWESOME.

I was chosen to be a Model of Courage for Ford Warriors in Pink! Me and 19 others from all over the country, serve as spokesmodels for the Warriors in Pink program. By sharing our story and saving lives, we are able to give back and make an impact!

See Tracie in Ford’s Models of Courage campaign!

 

Photo Source: “I Tried This Once” by Tony Alter is licensed under CC BY 2.0 / Text added to original

Juggling It All: Judy Schwartz Haley

Judy Schwartz Haley shares her best tips and advice after being diagnosed with breast cancer.

Judy is a writer and photographer, and she shares stories of parenting, living with cancer, and embracing every moment of life on her blog, CoffeeJitters.Net. She lives in Seattle with her husband and 5-year-old daughter, whom they just launched into the amazing world that is Kindergarten.

NAME

Judy Schwartz Haley

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

Diagnosed 3/10/2010
ER/PR-, HER2+, with Paget Disease of the breast
Stage 3 

HOW DID YOU FIND OUT?

I was having trouble breastfeeding my baby. I was diagnosed with mastitis but it wouldn’t clear up, so they sent me for a mammogram with ultrasound. They had the machine in their office, but they referred me to the Seattle Cancer Care Alliance for that diagnostic scan. I had to wait 4 days for that scan, and since they referred me to the cancer center, I knew there was a pretty good chance I had cancer. During the ultrasound and biopsy, my husband asked what else it could be, and the doctor said, “well, that’s just it, um…” I pretty much knew right then. When my doctor called the next morning to say, “I’m sorry it’s cancer.” I was not surprised.

TELL US YOUR REACTION.

My emotional reaction came in waves. When the doctor called with the diagnosis, I was totally cool and pulled together. It was those moments that I was wide awake at 3am that were the worst. And feeding my baby. I couldn’t figure out if it was still ok to breast feed or not. I called several doctors and finally got a call back saying cancer isn’t spread that way. But then I was wondering about the quality of the milk that is being created by this cancer-infested breast as well. But my baby, who was on solid food, decided she wanted to eat nothing but breast milk. She must have been picking up on all the anxiety, and looking for that comfort. Then I met with the breast surgeon and she said I definitely need to wean completely before the mastectomy, so it was a race to get her weaned. My baby dropped from 19 pounds to 17 pounds. In those early weeks after the diagnosis, this was my primary source of anxiety. I couldn’t allow myself to think beyond what was right in front of me. Another thing I did right after diagnosis was run to a bookstore to find a book that would tell me how to get through cancer without ruining my daughter’s life. I didn’t find one..

WHAT WAS YOUR TREATMENT PLAN?

I had a mastectomy, then my gall bladder acted up so I had to have that removed the next month and then wait another month after that to start chemo. Chemo was A/C and Taxol, but I reacted to Taxol, so then after a 6 week delay waiting for insurance approval, I was switched to Abraxane to complete treatment. Followed by a year of Herceptin and 6 weeks of radiation.

DIEP reconstruction in 2013

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

I put on weight with the chemo and have not been able to drop it. I have been dealing with extreme fatigue since then. I recently found out my thyroid is not functioning well and have started thyroid replacement therapy. No idea if this was cause by treatment, but hopefully this will help address the fatigue. I’m having trouble with lymphedema, and any little paper cut, bug bite, or hangnail quickly progresses to cellulitis, so I find myself hospitalized 3 or 4 times a year for something as ridiculous as a hangnail.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING MORE?

Shortly after diagnosis, I was connected with the Young Survival Coalition (YSC) which helps to empower young women with breast cancer and provide them with information and a network of peers. These women were amazing. That summer, at a picnic, I met some of their amazing and compassionate children, and it finally clicked for me that my cancer does not have to ruin my daughter’s childhood. At that point, I was able to relax a little and focus more on my own well-being. That realization, and those women, inspired me to volunteer with the organization. Now, I am a Washington State Leader, and Seattle F2F (face to face) Coordinator for YSC. I also write articles and blog posts about living well with cancer and parenting with cancer that I hope will be helpful and encouraging to other women in this situation. I have a series running on my blog called “How to Juggle Cancer and Parenting” and it includes interviews with many other survivors with children. 

WHAT WERE YOUR BIGGEST STRUGGLES AND HOW DID YOU MANAGE THOSE?

My biggest struggle with cancer was financial. At the time of my diagnosis, my husband and I were both full-time college students, living entirely on student loans (and occasionally had no choice but to use credit cards to survive), and we had a baby. Since then, we have both graduated (and let me tell you,completing my degree with chemo-brain was no picnic), my husband has a job with benefits, and I make a little money writing articles (and I’m looking for work), but we are so deep in debt it’s difficult to see a way out of it.

Another big concern was the well-being of my child. After years of infertility and a difficult pregnancy, this is my miracle baby. There was a point where I didn’t know if I would get to see her go to Kindergarten. Well, she’s in Kindergarten now, and she’s thriving. Yes, our cancer impacts our children’s lives, but they can still thrive.

WHAT’S YOUR BEST PRESCRIPTION?

I try to avoid regrets, especially regarding cancer and treatment, but there is one thing I wish I had done differently. I have a couple of good photos of myself alone, while bald, but I have only a couple out-of-focus pictures of myself with my daughter while I was bald, and none as a family, none with my husband. I didn’t really want the photos then, I didn’t like how I looked and didn’t want a permanent record of that, but now I’m glad I have those photos of myself from when I was bald. I wish I had photos of myself with my loved ones during that time. We came through this together. I wish I had something tangible, like the photo, that I could show my daughter, that emphasized the togetherness we felt while we were going through this experience. My advice: have some photos taken with your loved ones while you are bald. 

Read more from Judy at CoffeeJitters

Judy Schwartz Haley shares her best tips and advice after being diagnosed with breast cancer.

 

Photo source:

“Obert Family 2” by Phillip Dodds is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of Judy Schwartz Haley

New Beginnings: Mollie West

Mollie West shares her best tips and advice after a BRCA+ diagnosis, mastectomy and hysterectomy.

Mollie and I met several years ago and we quickly discovered we had two things in common: blogging and breast cancer. While she has never been diagnosed with breast cancer, both her grandmother and mother died from the disease. Mollie learned she carried the BRCA1 gene mutation and made the decision to undergo a prophylactic double mastectomy in 2013. She has shared two incredible and very personal experiences here on the blog. Today she updates us.

NAME

Mollie West

Read Mollie’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

I had nipples tattooed by Vinnie Myers mid-October of last year. Vinnie is amazing. If anyone has any questions or is considering his work, I love talking about it, so feel free to contact me.
I also had a hysterectomy the day after Christmas. Finally, my surgeries are finished. I am no longer waiting. The hysterectomy went well and after recovering from DIEP reconstruction, this recovery felt almost easy. I am very lucky and blessed that I had so little complications with any of these medical procedures.
I am very, very happy to share that I am healthy.

WHAT IS YOUR BEST PRESCRIPTION?

Hot flashes suck. I finally started tracking situations that my hot flashes were frequent and realized that I definitely had some emotional triggers. Once I made that connection, I could be more prepared and be more aware when they were coming, which helped me overcome them. Like highly stressful situations trigger them for me, so if I know that I am in a situation that may cause one, I take lots of deep breaths and calm myself down to get through it easier.
I also started running. Incorporating that regular fitness in my life made me feel so much stronger and even invincible. It gave me strength and courage that I didn’t have before. Accomplishing a 5K and working towards something that was so intimidating to me gave me so much confidence and forward momentum. It didn’t hurt that I lost 20 pounds while training. I strongly recommend the C25K app by Zen Labs for beginner runners. 

TELL US SOMETHING AWESOME.

I accidentally started a successful business this year. After my mastectomies I decided to make my own deodorant because I no longer trusted commercial products. It was such a good, effective product that friends and family started requesting it for themselves. It’s empowering helping others and educating loved ones (and even strangers) on harmful effects of ingredients in everyday personal care products or household products. I never intended to make or sell personal care products, but now Newly Organic Natural Deodorant is in two stores locally and I’m about to open an Etsy store. You just never know what the future holds and where life will take you.
I’m not sure if this qualifies as “awesome” to others, but I am so amazed at where I am in life right now. So much better than I imagined and far from where I thought I would be at this point in time, in the best way possible.

Read Mollie’s perspective on carrying the BRCA1 mutation.

Mollie West shares her best tips and advice after a BRCA+ diagnosis, mastectomy and hysterectomy.

Photo Source: “Hot Hot Hot” by xannah

Personal photos courtesy of Mollie West

Everyday Beautiful: Holly Bertone

Holly Bertone gives her best tips and advice after a breast cancer diagnosis.

Holly Bertone is an author and breast cancer advocate. She is the President and CEO of Pink Fortitude, LLC, a company dedicated to promoting inspiration and positive self esteem to cancer survivors and ALL women. Holly’s books include the heartwarming Coconut Head’s Cancer Survival Guide: My Journey from Diagnosis to “I Do,” the e-book Drops of Fortitude: Find Your Inner Strength During Cancer Treatment, and children’s book, My Mommy Has Cancer. She is a contributing editor for The Breast Cancer Authority, and is a syndicated contributor for BlogHer.

Holly is originally from Waynesboro, PA. She holds a Masters Degree from Johns Hopkins University, a Bachelor’s Degree from Elizabethtown College, and is a Project Management Professional. You can follow Holly on her website and blog, Coconut Head’s Survival Guide. She is passionate about reaching out to breast cancer survivors, and also volunteers for organizations supporting military veterans. Holly is an Ambassador for the Tigerlily Foundation and was named a 2014 Woman of the Year by the National Association of Professional Women. In her free time, she loves to garden, hit flea markets, antique stores and yard sales, and drink a cup of coffee on her back porch. Holly is married to a retired Green Beret, is a Stepmother, and lives in Alexandria, VA.

NAME

Holly Bertone

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed on my 39th birthday, August 2010. Two days later, my boyfriend proposed and we got engaged.

HOW DID YOU FIND OUT YOU HAD BREAST CANCER?

I found the lump on my own and by accident. I went immediately to my primary doctor, which started the process of a mammogram, biopsy, MRI, and numerous other tests. I was healthy and had no risk factors or family history. I was ER/PR positive, HER2 negative.

TELL US YOUR REACTION TO THE DIAGNOSIS.

It was hard to digest those eight words, “you have breast cancer” and “will you marry me” in only 48 hours time. We focused on sharing the good news first, and the news about my cancer eventually came out. I spent that engagement year going through cancer treatment, rather than planning a traditional wedding. That year, I learned about my priorities in life, and how they are non-negotiable. I learned that I have to take care of myself. I learned that my faith does not waver. I learned about unconditional love from my Fiancé and soon-to-be Stepson. I learned that I’m a lot stronger than I think. I learned that life is too short to have regrets.

WHAT WAS YOUR TREATMENT PLAN?

I had a lumpectomy on my right breast. The artist formerly known as the tumor was 1.3 cm. I had four rounds of chemo – taxotere and cytoxin. I had 36 radiation sessions. I’m on 5 years of tamoxifen, maybe more. My last treatment was on March 21, 2011 and our wedding was 10 days later on March 31, 2011. Even several years later, I’m still recovering, both inside and out.

HAS HAVING BREAST CANCER INSPIRED YOU TO DO SOMETHING GREATER WITH YOUR LIFE?

Early on, I knew that breast cancer was God’s gift to me. I knew that I was going through those trials for a greater cause. I have since dedicated my life to promoting breast cancer awareness and supporting other survivors. I have authored several inspirational books for cancer patients. I write, I blog, I tweet, I do as much as I can every day to send a positive message about breast cancer and survivorship.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

My biggest struggle going through treatment was dealing with self esteem issues. I lost part of my breast, all of my hair, and was thrown into early menopause, all while trying to be a beautiful and sexy fiancé. Chemo wrecked my GI tract and needless to say, when you are bald and have the walking farts, it’s hard to find that inner beauty queen. It took me a long time to re-program my brain to understand that beauty isn’t how long your hair is or how big your boobs are. Real beauty comes from within. That is the beauty that my fiancé and his son saw in me, and I had to learn to find it for myself.

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

Life is short and precious. You never know what tomorrow is going to bring. As cliché as it sounds, live each day to the fullest and give as much love and kindness as you can every day. Take care of your health, and don’t be in denial if something seems off. Tell yourself every day that you are beautiful, because you are.

 Read more from Holly at The Coconut Head’s Survival Guide 

 

Photo Source: “Mirror Mirror on the Wall” by Frank Kovalchek is licensed under CC BY 2.0 / Text added to original

Allow Yourself To Be Ok With Things: Karen Yao

Karen Yao shares her best advice on life after a breast cancer diagnosis.

Karen Yao is 40 years old, living in Sacramento with her husband of ten years and two boys, ages 5 and 7. An ICU Registered Nurse for 18 years, she changed paths to work in clinical informatics after her diagnosis. Married for ten years to an airline pilot, Karen and her family love to travel.

Karen and I have history. We met on a message board for young women with breast cancer in late 2008. Together, with a group of 8 other women, we bonded over our fears, our struggles with treatment, our babies and food. I laughed out loud when I read her advice not to take food seriously because there were some serious talks about kale back in those days.

You’ll learn that Karen was newly pregnant when she was diagnosed. You’ll also read that she was diagnosed with metastatic brain cancer earlier this year. Karen’s currently has been undergoing a series of scans to monitor her brain. She is a wonderful writer and keeps her Caring Bridge page updated.

NAME

Karen Yao

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed on September 5th, 2008 and then in January of 2014 with metastatic breast cancer in my brain.

HOW DID YOU FIND OUT?

I was 6 weeks pregnant – I’d just found out the week before that I was expecting our second child. I was thrilled. I was in bed one night and realized my left breast was really sore. I started poking around and thought I felt a lump. I asked my husband and he was sort of, yeah, maybe there’s something there. At my first OB visit 2 weeks later I asked the Nurse Practitioner I see, Missy, to check it out. She didn’t think it was anything but sent me for an ultrasound anyway. An hour after I left the radiology office I got a call telling me I had an appointment with the breast surgeon at 8 the next morning. I went in for a biopsy and two days later I had cancer.

TELL US YOUR REACTION.

My surgeon called me while I was in the car. It was Friday morning. I was almost home and, to this day, I have no idea how I made it the quarter mile to my driveway. I was crying so hard when I walked in the front door I couldn’t even tell my husband what was wrong. I was terrified but not for me. I was terrified for my baby. I didn’t know anything about cancer in young women much less in pregnancy. Even though I am a nurse, I still didn’t know anything about oncology-that wasn’t an area I worked in. I talked to the surgeon that day but couldn’t meet with an oncologist until Monday. The surgeon had never had a patient who was pregnant with a cancer diagnosis so she couldn’t tell me anything. By that night, I was resolved that I would not give up my baby no matter what. I had no idea what I was in for. I really didn’t. I only knew of two people who had ever had cancer and both of them died within weeks of their diagnosis. I remember putting my 15 month old to bed that night and as I sat watching him sleep I thought, “I’m never going to see him go to Kindergarten.” Then I cried for hours I think. When I woke up the next morning I was looking for anything, anyone who could tell me about being pregnant and having cancer. My husband searched the scientific sites and I searched the blogs and personal story sites and finally met someone who had been diagnosed when she was 28 weeks pregnant. She helped me so much to feel like my baby and I had a future.

WHAT WAS YOUR TREATMENT PLAN?

I had a lumpectomy when I was 9 1/2 weeks pregnant hoping that I would have clean margins. Unfortunately I did not so I had a left mastectomy when I was out of my first trimester (at 14 weeks). At 16 weeks I started my first round of chemotherapy. I had six doses of adriamycin and cytoxan. I finished my last dose of chemo when I was 31 weeks pregnant and delivered my beautiful baby boy at 37 weeks. When he was one week old I had surgery to start my reconstruction process and when he was three weeks old I started another 12 weeks of chemo followed by a right mastectomy. I then started tamoxifen and had six weeks of radiation. I completed my reconstruction at the end of 2009.

HOW HAS TREATMENT AFFECTED YOUR WELL-BEING, IF AT ALL?

It’s been a tough journey, I won’t lie about that. It’s been a lot of ups and downs. I have struggled with energy. I just have never felt like I was able to get back to pre-cancer levels. At the same time, it’s hard to separate what would be normal for a mom working full-time taking care of a newborn and 2 year old and what is because of cancer. I struggled with not being able to breastfeed my youngest. My husband and I really wanted a third child and I have struggled with the fact that we can’t. I have been in near constant pain as a result of estrogen-depletion therapies. I struggle a lot with sex drive. I just don’t have one anymore. I have tried a lot of things in an effort to keep this area working for my relationship with my husband but it is a struggle and we have a lot of discussions about this.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

My biggest struggle was probably feeling like I was doing a good job of being a mom and a wife. I felt that my low energy level, constantly being in pain and feeling sick made me a horrible parent and an even worse wife. I still struggle with this, especially since my metastatic diagnosis. I’ve dealt with this by not being so hard on myself. By allowing myself to be ok with a less than perfect looking house, by being ok with dishes in the sink and unfolded laundry. I use those times to spend with my boys or with my husband. I look for opportunities to build my relationship with my husband.

FROM YOUR EXPERIENCE, WHAT ADVICE DO YOU HAVE FOR OTHERS WHO HAVE BEEN DIAGNOSED?

Eat healthy, but don’t take it too seriously. Don’t let food control you. You couldn’t control getting cancer, but letting food control you won’t change that. Enjoy your food and indulge every once in a while.

Take pictures of yourself. You might hate the idea of having pictures taken when you are feeling sick and ugly and have no hair, but you need them. For me, it’s like I was gone from my family for almost a year. There is one picture of me at Christmas and one picture of me when the baby was born but beyond that, from September 2008 until June 2009 there’s nothing of me. You will look back on those and see the strong woman you are and be proud of what you went through.

Get out of bed every day. Even the days you don’t feel like it. Get dressed too. Put on a little makeup. You’ll be amazed at how much better you feel.

Karen Yao shares her best advice on life after a breast cancer diagnosis.

Photo source:

“Orange 2” by rajkumar1220 is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of Karen Yao.

Sometimes You’ve Got To Laugh: Leslie Jones

Leslie Jones shares her advice for living with stage IV breast cancer.

When Leslie saw her doctor about a lump in her breast in 2009 it luckily turned out to only be a cyst. It was around this same time her doctor encouraged her to undergo BRCA testing because her mother was diagnosed with breast cancer at age 27. She eventually learned that she was a carrier of the BRCA1 gene mutation and filed that info under “Things To Take Care Later.” Not long after, she discovered another lump and convinced herself it was just a cyst again.

NAME

Leslie Jones

Read Leslie’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

The end of September will be my fourth year of living with Stage IV breast cancer and two years of no evidence of disease.
For the past six weeks, I have developed a severe rash over my radiated area and I was finally able to get in to a dermatologist who believed I have what is called radiation recall. Radiation recall can occur during radiation, or years later. This has been a very frustrating time for me as I have been in an out of the emergency room and no one seems to know how to treat it except for steroids.
I have been getting an Xgeva injection for the past year every three months and the side effects have been miserable. Fortunately, after much convincing to my oncologist she said I could stop taking this particular chemotherapy.

 

WHAT IS YOUR BEST PRESCRIPTION?

Although this is a cliche, laughter truly does help. When everything gets to be too much my sister will crack a joke completely off the wall and sometimes you just have to laugh until you cry.

Aquaphor is definitely your friend through radiation.

A bald head is awesome! For a brief time, you don’t have to worry about styling, curling, hair cuts etc!

TELL US SOMETHING AWESOME.

This past May I went back to work! After being a stay-at-home mom for seven years, and then the diagnosis I decided I needed to do more than just sit around my apartment. I was only able to work a few hours at a time because the inflamation in my foot was unbearable, however three months later I’m pulling 9-10 hour shifts! I absolutely love my job and the people that come into my store. I’ve met fellow breast cancer survivors and always give a hug when they come through my line.
Sharing my story has also allowed me to give back. If I can help just one woman feel better about their own cancer diagnosis, then it’s worth it!
It was definitely difficult to believe there was life after the chemo, radiation, surgeries, but I am living proof you can beat Stage IV breast cancer! 

Leslie Jones shares her advice for living with stage IV breast cancer.

Photo Source: Untitled photo by Alex is licensed under CC BY 2.0 / Text added to original

Personal photos courtesy of Leslie Jones