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

Ask and Don’t Apologize: Sarah Malin-Roodman

Sarah Malin-Roodman shares her best advice on how and why to ask for help during and after a breast cancer diagnosis. Sarah Malin-Roodman was diagnosed with thyroid and breast cancer in the span of three years. I had forgotten how much I could relate to her circumstances until I re-read her post from last year. Both of us had new babies when we were diagnosed and both of us struggled with the loss of our fertility. Here’s an update on the amazingly strong Sarah.

NAME

Sarah Malin-Roodman

Read Sarah’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

None. I am delighted to report that I am just in maintenance mode now. I only have to do regular check-ups for both my thyroid and breasts. Even my hot flashes have settled down over the past year — or maybe I have just learned to take them in stride! After two years of too many surprises, I was just craving a boring life. 

WHAT IS YOUR BEST PRESCRIPTION?

Ask for what you want. If there is not a good connection with a doctor, ask for another with no need to apologize. You deserve to feel comfortable. If you need help with meals or managing life, ask your friends and family even if you feel shy. They will probably surprise you because they just want to help. If you feel lost, ask for support. Breast cancer is (unfortunately) common, so there are lots of people who share your experience. 

TELL US SOMETHING AWESOME.

The best gift I gained from having cancer, not once but twice, was a clarity and perspective on life. My first cancer diagnosis came only months after my daughter’s birth. At the time, it was challenging to simultaneously be a new mom and consider my mortality. But it forced me to strip down to the most essential concept of “I’m ok, she’s ok” and nothing else matters. Now, in my post-cancer-but-still-have-to-worry life, I hold onto that simple thought.

Sarah Malin-Roodman shares her best advice on how and why to ask for help during and after a breast cancer diagnosis.

Photo Source: “Wide Open” by storebukkebruse is licensed under CC BY 2.0 / Text added to original

Personal photos courtesy of Sarah Malin-Roodman

Changes Must Be Made: Megan Stull

Megan Stull shares her advice on what changes must be made in life and in the breast cancer community post diagnosis.

Megan Stull is a thirty-six-year-old attorney for a tech company living in Arlington, Virginia. She does not have children, but is an adopted mom to her “fur baby,” a beautiful tortoiseshell cat named Kona. I also am a wife to a wonderful husband, a daughter to two amazing parents, a sibling to a wonderful sister, and an aunt to two tremendously talented children.

NAME

Megan Stull

HOW LONG HAS IT BEEN SINCE YOU WERE DIAGNOSED?

I was diagnosed at 11:00 a.m. on Monday, October 22, 2012. I sat alone in a conference room at my office as I received the news that I had invasive lobular carcinoma in my right breast. Later on, I’d find out that it was Stage 1A with no lymph node involvement, which was a great blessing.

HOW DID YOU FIND OUT YOU HAD BREAST CANCER?

It all started in a shower on a business trip, when I noticed just the littlest change in my right breast. I made a mental note to bring it up during my annual examination with my doctor. When I did, she was pretty convinced that it was nothing, but gave me a slip for an ultrasound anyway. That one ultrasound turned into two ultrasounds and two mammograms, followed by a core needle biopsy. Everyone along the way thought that the area was a benign fibroadenoma or a cyst. So, getting the call that it was breast cancer was a real shock to me. Even the radiologist who delivered the news expressed surprise.

TELL US YOUR REACTION TO THE DIAGNOSIS.

My husband and I decided the weekend before I received my results that we would “celebrate the good news” by planning a spectacular vacation. Those plans were not made at that time (although we have taken a couple of spectacular trips since).

Getting the news was stunning. I was surprised because I am by my nature a very emotional person. But, I shut down into an almost “cruise control” mode. I methodically called my husband, told him I had breast cancer, and said I had to go because I had a ton to do. We could talk about it later. I told my mother, and I could feel my words sucking the air out of the room she was in. Again, I said I would update her with more information later. I remember my sister starting to cry on the phone, and I told her that I had no time for that. She’d have to cry on her own. I needed to make appointments.

It was like after the breast cancer diagnosis, I instantly grew some armor to make it through the tests and processes. I had no time to be scared, and I was too naive and uninformed to really know the perils that I could be facing. For instance, the idea that it could have spread never crossed my mind until much later.

WHAT WAS YOUR TREATMENT PLAN?

I started with a lumpectomy, but that surgery did not yield clean margins. Rather than having a re-excision, I decided to have a bilateral mastectomy. My reasons were tied to aesthetics, because the first surgery had taken away more breast tissue on my right side than had originally been expected. I followed my oncologist’s recommendations to have four rounds of chemotherapy. I now take Tamoxifen, and will continue to do so for at least three to four more years.

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

Survivorship is hard. The fear of recurrence is ever-present. Every anomaly in your body creates angst. You can’t have a headache without a fear that it is cancer crossing your mind.

In many ways, I am constantly surrounded by illness and death. I hang out with other cancer patients and survivors, and I help them through treatment. Some people don’t make it. That always is terrible. But, I feel a duty or a compulsion to remain involved. I know what it is like to go through treatment, and I want to be there to help other people. It gives my experience meaning.

I end up second-guessing myself a lot and trying to figure out why I got sick. I ask whether I exercised too much. Did I eat the wrong things? Did I have too many cocktails? Did I use the wrong beauty products? Is this hereditary? It’s very easy to write a narrative where you blame yourself for having cancer.

All of that said, there is a lot of good in my post-cancer existence. Understanding that life can change in an instant makes you value the present more. I see “everyday things” around me, and I realize that they are precious. Seeing people hug one another elicits a huge emotional response from me. I remember being scared to hug during chemo for fear of getting sick, and now I love having the opportunity to embrace people who are important to me. I try to enjoy my life more. I try to work more reasonable hours. I take the opportunities to go on trips with my family and friends. In all, I find myself being willing to take more risks and not to bypass opportunities to do wonderful things.

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

As an attorney, I am an advocate. And, I always have subscribed to the concept of paying it forward by mentoring law students and undergraduates.

That attitude and skill set has carried over into my post-cancer life. I am a mentor with the SOS group (Survivors Offering Support) run by a local organization called Life with Cancer. In that role, I assist women going through cancer treatment, and I serve as a resource to help them formulate or answer questions about their experiences. I have become very active with my local Young Survival Coalition (YSC) Meet-Up, and I am honored to have made many friends through that group. YSC gives women diagnosed with cancer under the age of 40 a forum to have their specific concerns addressed, and to build a network of fellow survivors to help them through all stages of the breast cancer process.

Raising awareness is also very important to me. I am anxious to tell my story because my diagnosis was the direct effect of two women who I knew who were diagnosed under the age of 40. If they had kept their cancer a secret, I may have never followed up when I found that strange area in my chest. One of these women is thriving and loving her life, and I continue to see her as a role model for survivorship. Sadly, I went to the funeral of the other of these women a month before I was diagnosed, but I believe it is my duty to carry forward her legacy as a survivor.

Finally, I want to keep the fundraising fires burning to find a cure for all cancers, but especially for breast cancer. I did the Avon Walk For Breast Cancer in New York City last year, where my dear friends Natalie, Meghan, and I raised around $20,000 to help other women through treatment and to fund research. And, I am currently the captain of a Making Strides Against Breast Cancer team for our local walk in Washington, D.C. this year.

SHARE YOUR BIGGEST STRUGGLES AND HOW DO YOU MANAGE THOSE?

The biggest struggle with breast cancer was the pain that I perceived that my illness inflicted on my loved ones. The most prominent example is my husband. My husband is the most wonderful, extraordinary partner that I could have ever dreamed of having. He stood by me through every appointment, every test, every surgery, and every chemotherapy treatment. He put me first even though he had just started a new job. He was willing to put everything on hold for me or to work odd hours to be with me. He made me feel beautiful even when I had no hair, or when we were cleaning my dressings after my surgeries. I look at this man, and I wonder constantly if I could ever be that wonderful of a partner, and if I ever could repay that outpouring of love. I just hope I could be there in the same way for him. I have managed these feelings by being clear about my gratitude to him and by trying to be the best wife that I can be. I also have tried to embrace opportunities to experience joy together now that I am well, and to make the most of even the mundane aspects of our time together.

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

Breast cancer does not end when you finish treatment. There are physical effects of treatment (e.g., crazy looking toe nails, new hair colors and textures, scars, etc.). There is fear of recurrence. There are lifestyle changes that you need to make in response to your diagnosis, such as tweaks to your diet or exercise routines. Having cancer stays with you even if you no longer have the disease in your body.

The other thing that is important for me to convey is that women are still living with and dying of this disease. Too often, women with metastatic disease are not made part of the discussion about breast cancer. These women are pure inspiration, and their strength is undeniable. I was fortunate to be diagnosed at a early stage, but I understand that is not the situation with everyone. In the fog of pink that is October, it should not be the women perceived to have “beaten cancer” who are deemed most inspirational. Those of us who have had breast cancer know the real story. And, that story is that there is no person who is braver, stronger, or more worthy of our attention in “Pinktober” than our sisters who are still fighting this disease every day.

Follow Megan on Twitter:  @meganannestull

Megan Stull shares her advice on what changes must be made in life and in the breast cancer community post diagnosis.

Photo source:

“A Study of Apples 1” by Artotem is licensed under CC BY 2.0 / Text added to original

Personal photo courtesy of  Megan Stull

More Than Cancer: Catherine Brunelle

Catherine-Brunelle
Catherine was diagnosed with breast cancer and treated in 2010 at the age of 27. In the summer of 2013, she and her husband set out to start a family and learned that the cancer had metastasized in her lungs. She is currently living with metastatic breast cancer. I hope to meet Catherine someday because this girl knocks my socks off.

NAME

Catherine Brunelle

Read Catherine’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

My health is doing well. The hormone therapy is still working, and the nodes in my lungs are slowly shrinking.

I have to live with the next scan always being on the horizon, and the anxiety of what that scan might show. But so far so good. And that feels great. May it be that way for a long, long time (at least till I turn 85).

WHAT IS YOUR BEST PRESCRIPTION?

Allow yourself an identity that isn’t about cancer, and nurture that side of yourself whenever and however possible. Life goes on, even after a metastatic diagnosis.

TELL US SOMETHING AWESOME.

I’m hosting a Podcast for writers over at OttawaWrites.com! That happened as a result of self-publishing my beautiful novel, Claire Never Ending – which means (!!) since my post on your blog last year, I’ve actually produced the book. Claire Never Ending has truly been my most AWESOME thing this past year. The Claires represent so much of my heart, and how I like to see myself fitting into the world, whether or not my husband and I ever have a family. Their stories give me hope in deep and lasting ways.

So, along with being Bumpyboobs, I’m also Catherine the Writer. In 2015, I hope to become Catherine the Traveller and set off for adventures.

catherine-burnelle

Photo Source:
Woman Photographer by Pedro Ribeiro Simões is licensed under CC BY 2.0 / Text added to original
Personal photos courtesy of Catherine Brunell

Pain Meds and Laughter: The Lighter Side of Palliative Care

Late Saturday night, I received a lovely email from a woman who explained that her step-mom was a regular reader of my blog. The email went on to read that her step-mom, Karin, was currently in palliative care after being diagnosed with metastatic breast cancer and that she didn’t have much time left. Karin and her step-daughter, Marsha, wrote the following piece together and I am honored to share it here.

Please keep Karin and her family in your thoughts.

I didn’t want to write this blog! Partly because I wanted to keep what my family has been going through for the past month private. I also thought that people might take offense to some of the things and Karin and I have laughed about during our daily visits – things that have helped me see that palliative care and dying aren’t that scary. But, Karin asked me to write this, so it’s with a heavy heart that I dedicate this to her memory and to the staff at Riverview Health Centre. Cancer sucks, but palliative care helps everyone cope just a little easier.

I have spent the past three weeks in Winnipeg to be with my family following Karin’s (my step-mom) stage IV breast cancer diagnosis. It’s not the first time my family has heard the dreaded “C-word” – that happened almost two years ago. But, that time Karin’s chances to beat this thing were great. She would have to undergo chemo, a mastectomy and radiation, but afterwards all of our lives would be back to normal; or so we thought. Flash forward one month ago – no that’s not a typo – in the last month all of our lives have drastically changed. One month ago, Karin started complaining about flu-like symptoms, aches, pains, headaches, and then she fainted…That’s when she ended up at the hospital. It’s there that we learned that her Inflammatory Breast Cancer was back, but not it had metastasized in her brain and spine. At first we were told the prognosis was six months to a year, but a few days later the doctors decided that transferring her from the Victoria Hospital to Riverview’s Palliative Care Unit was her best option with the short time remaining. There’s a longstanding joke in Winnipeg: “No one comes home once they go to Riverview!” For a lot of people, palliative care is a scary world, because it is a place where loved ones go to spend their last days. But, there’s another side that is not often talked about. Palliative care units, such as Riverview, allow patients to maintain their dignity while caring for the patient and the family members, but letting us know that it’s okay to laugh. Basically, they help all of us to see that dying isn’t that scary. My past three weeks in palliative care have at time been hard, but many of my afternoons have been filled with joy, laughter and a lot of heavy narcotics! Ok, the narcotics were for Karin – but I sometimes had to press the button – until the doctors upped her dosage. I’ve tried to capture the lighter moments of this situation because these are the moments that our loved ones, like Karin, want us to hold onto when they pass and what the staff at Riverview have managed to give us these past few weeks.

Something that has stood out for both me and Karin is the fact that both the geriatrics and palliative care units share the same floor. We figured that it makes the transfer to the dark side, oops…I mean East Wing, a little quicker! Comparatively, the palliative care wing is much quieter than the geriatrics unit. The only exception is that there are more call bells and IV poles buzzing every few minutes than on the other side. In fact, geriatrics seems to be the party wing with their daily walks, occupational therapy sessions and rowdy games of bowling and miniature golf! Needless to say, Karin and I have decided that the palliative care unit needs a social director, or at the very least, a representative at these daily outings. Maybe it was the pain meds talking or the side effects of the brain mets but we have spent our afternoons dreaming up ways for Team Palliative Care to complete and dominated against the geriatrics unit! When Karin got her head shaved, a side effect of the four days of radiation treatment she had, we talked to the nurses about hosting a fashion show where we’d decorate her “beautiful” hospital gown and IV pole. Let’s be honest, all of these grandiose ideas are nonsense, but boy, does it make us laugh. Actually, we have everyone laughing, from the occupational therapist who works with Team Geriatrics to the nurses we’re trying to enlist for our fashion show. Heck, even Karin’s parents were laughing when we talked about the need to get her campaign for Social Director off the ground because we didn’t know how much time Karin and the voters had left to make this happen! All of this might sound random and a little awful, but these inside jokes – or possible hallucinations – is what allows us to cope with the fact that Karin is dying. It also helps us have fun, so that the final days don’t seem so painful.

Besides the caring staff and the individual attention that is given to each patient, the best thing about palliative care would probably be the drugs – I mean, the “prescribed pain medication.” A good part of my three weeks has been spent making sure that Karin gets her fix whenever she needs it. In normal circumstances, doctors would be hesitant to give patients the amount of med that Karin is on because, as few of the student nurses pointed out to us, they are “addicting forming.” Really? Is this really going to be a problem? They shouldn’t have told us about that because between dreaming up social committee activities for the wing, we also started exploring the possibility of opening a Detox-Palliative Care Unit, you know…to help the terminally ill patients that have developed a drug addiction, detox in their final days. Once again, the nursing staff were kind enough to humor us by jumping in on the nonsense. At least once a day, we would joke about Karin’s newly developed drug addiction and the fun stories, hallucinations, and great rests they bring. These jokes not only helped lighten the mood and the heaviness of the situation, but sometimes they helped numb the pain a little – for both Karin and us loved ones that would otherwise have to watch her suffer. The doctors and nurses can’t take the pain away but they do give us tools (i.e., medication and gentleness) to help manage or numb it a bit. In many ways, the laughter has also been a way to manage the pain for all of us.

Apparently there’s two things that happen when you become a Palliative Care patient: 1) You start worrying about trying to take care of everything and everyone with the time you have left and 2) You pretty much get a Free Pass to say, eat and do anything you want! Karin quickly understood this rule and took full advantage of it! In the early days of this diagnosis, let’s be honest, it was 3 days before I arrived in Winnipeg, Karin made sure to take care of the nitty-gritty details! But, when I got there she realized that there was one more piece of “unfinished business” that she had to take care of – finding me a husband! She quickly made it her daily mission to try and convince Super-Tony, her day nurse, that I was a super catch. In the real world, this would normally lead to very awkward moments. But, not when your a member of Team Palliative – that’s because you get to say, do, and eat anything, without worrying about social faux-paus and embarrassing your loved ones. Despite Karin’s efforts, I will be returning home to Quebec single and without Super-Tony! But everything else is taken care of – Karin has made sure of that! We have said our goodbyes. We have laughed and we have cried. We have said everything that needs to be said and then some! My dad, little brother, her two teenage kids, and everyone else that has loved her will get through this and will be alright – Karin has made sure of that and she has done so with grace, dignity, love – she hasn’t needed to use her Free Pass!

I came to Riverview three weeks ago, and on Monday, I will be defying the odds by going home, but sadly Karin won’t! The doctors and nursing staff can’t cure Karin’s cancer and one day soon she will lose this battle that she started almost 2 years ago! But what they have done is managed all of our pain, given her the respect and dignity that she deserves, while reminding us they it’s okay to laugh and continue to make new memories; all of which make death less scary. Thank you Riverview!

Sleep with angels my friend!

{Edited:  Karin’s battle against breast cancer ended peacefully. Marsha thanks everyone for your support and encouragement these past few weeks.}

It’s This Simple: Mary Killian

Mary Killian was diagnosed with stage IV breast cancer 22 years ago. Currently disease free, she gives a simple tip on staying bone healthy.

In 1993, Mary Killian was 30 years old and diagnosed with stage IV metastatic breast cancer. Like Cathy’s story, I go back and read Mary’s experience when I worry about a recurrence. Mary underwent high doses of chemotherapy, a bone marrow transplant and fourteen years of Tamoxifen. It’s been 22 years since her diagnosis and this May she’ll watch the son who was only nine months old when she was diagnosed graduate from college.

NAME

Mary Killian

Read Mary’s 2013 submission here.

GIVE US AN UPDATE ON YOUR HEALTH

No. Another year of no disease — 22 now!

WHAT IS YOUR BEST PRESCRIPTION?

I was never a big exerciser in my younger years, but for the last seven years, I have been walking four miles/weekday with a friend (year-round in all kinds of weather!). I feel that I’m in better health and fitter than I’ve ever been. I’ve been able to reverse some of the bone loss I’d sustained since I began menopause at age 31.

I’ve been NED for 22 years, so, fortunately, breast cancer is no longer part of my daily life. But I never forget how fragile life is and appreciate every day as a gift.

Tell us something AWESOME, something completely out of the box.

Navigating daily life after treatment was not always easy, especially dealing with the side affects of 14 years of Tamoxifen and very early menopause followed by a hysterectomy. But, honestly, the most awesome thing has been being around to see my boys grow up. My older son, who was just 9 months old at my diagnosis, will turn 22 next month and graduate from college next May.

Mary Killian was diagnosed with stage IV breast cancer 22 years ago. Currently disease free, she gives a simple tip on staying bone healthy.

Photo Source:
“Sport Shoe Shopping” by LotusHead
Personal photo courtesy of Mary Killian