Hear My Voice: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

 

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. Continue reading

Hear My Voice: Dealing With the ‘What Ifs’ Before and After ‘I Do’

LBBC blog pic_AyannaAyanna Phillips writes about how she and her husband overcame the what-ifs and lived their lives together after her diagnosis with metastatic breast cancer.

 

“To join with you and to share with you, all that is to come…”

While going over our wedding vows, this was the part that was hardest for me. What a loaded statement given our circumstances. There were moments while I was planning our wedding that I was consumed with joy knowing that I had found my soul mate. I never thought I would love so deeply, trust so willingly and laugh so hard. There were also extremely difficult moments when I just about drove myself insane. What if the pain of my most current metastasis to my bones prevented me from walking gracefully down the aisle as I had dreamed? (I had acquired quite a limp at the start of the summer because of the disease in my hip.) And the one that kept me sleepless in bed a few nights after slaving over DIY projects and the perfect shade of pink…What if I get sick and we have to cancel the wedding?

Trying to balance my diagnosis and my thoughts on forever didn’t just start with our wedding. I was diagnosed just one month after our engagement. While most women are basking in the glow of their recent engagement and diving head first into the sea of planning, I was forced to put all thoughts of a wedding on the back burner and focus on my health. It felt like all the things we planned to do might never come to be. The what-ifs that come with a metastatic breast cancer diagnosis can rival the worst day in treatment sometimes. Continue reading

Hear My Voice: Moving Beyond Awareness

AnnbyKorn1Ann Silberman wants readers to think critically and fund research to help people with metastatic breast cancer reach their goals and milestones.

 

It seemed slightly odd to be asked to write for a website called “Living Beyond Breast Cancer” when, as a woman with metastatic breast cancer, it is only my family who will live beyond cancer. I will merely live with breast cancer until it kills me.  But so much of Pink October has so little to do with those of us who are metastatic that I agreed that our metastatic voices need to be heard this month.

In 2009, I was diagnosed with Stage IIA HER2-positive breast cancer. I did the normal treatment for my diagnosis; mastectomy first, then “TCH” which is 6 rounds of Taxotere and Carboplatin and a year of Herceptin. I cried the night before I lost my breast, I smiled as the nurses handed me my chemo graduation certificate, and my last Herceptin treatment brought great relief. My year of endurance had ended and now I could get fully back to my life.

At my very first 3 month post-treatment appointment, my doctor sent me for a scan, which brought the devastating news: breast cancer had spread to my liver. My cancer is now incurable.

And so I did as we all do – I searched for survival statistics, read stories of struggle and death, and learned acceptance.  I figured out how to live with a terminal illness (and was not always graceful about it).  Finally, I set a goal: I would see my son graduate from high school.

Over the course of the next three years, I was sicker than I ever thought anybody could be, but my doctor did not give up on me, and I did not give up on trying for my son. I had half my liver removed in an effort to eradicate the liver mets, only to find they grew right back. I nearly died from c-diff sepsis that landed me in the ICU and then left me recovering at home, weak and sick, for months. I struggled through 7 different chemotherapy drugs, each with their own side effects, until my marrow would no longer recover and my immune system was gone. I did SBRT radiation on the mets that continued to mutate. And, finally, I was put on Perjeta, which I call my miracle. My mets disappeared into the ether and in May of 2014, I not only watched my Valedictorian son walk with his high school class, but also this September I took him to his college, Caltech, settled him in, and even made his dorm room bed. Despite the odds, I reached my goal. Continue reading

Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading

Hear My Voice: The Hope of Many Summers After a Metastatic Triple-Negative Diagnosis

Annie GoodmanNew York journalist Annie Goodman discusses the realities of a metastatic triple-negative breast cancer diagnosis, and living her life with more hope and less fear.

 

Maybe it’s all in my head. I can’t have brain tumors. Maybe I’m just depressed and need psychiatric help.

After discovering a lump, I was diagnosed with stage IIB triple-negative breast cancer on February 29, 2012. I was 30 years old with no family history of cancer. I had a mastectomy, reconstruction, four rounds of Adriamycin and Cytoxan and 12 rounds of Abraxane chemotherapy. While in treatment, I found out I had the BRCA1 mutation. On November 30, 2012, I finished radiation and my doctor declared I was in remission.

I went back to normal life. I enjoyed having a healthy appetite again. My hair grew back. I went back to work full-time. Having cancer was no longer all I could think about. It started to become a memory, and I loved life as a survivor.

Due to the BRCA1 mutation, I had to go for ultrasounds of my ovaries every six months. My first screening was perfect. In November 2013, I went for my second ultrasound, and as soon as I got into work, my doctor’s office called: I needed to come in immediately. My right ovary was 11 cm. A normal ovary is 3 cm.  Continue reading

Hear My Voice: Facing the Emotional Roller Coaster of Metastatic Breast Cancer

MBC PyschoSocial Expert Julie Larson LCSWA diagnosis of stage IV breast cancer can lead to a roller coaster of emotions, which is normal. Julie Larson, LCSW, developed this list of tips and ideas to help smooth the ride. 

The weight in the room is palpable, thick with uncertainty and fear. Later I hear undeniable hope and the unmistakable clear tone of renewed perspective. Tears swell close to the surface during intimate conversations and the roar of laughter is a quick partner to humility and grace. This is the roller coaster of emotions that inevitably accompanies a cancer diagnosis, including metastatic breast cancer. Fear, worry and uncertainty woven together with hope, renewed perspective and gratitude. Experiencing the extreme shifts is often startling and unfamiliar to many affected by metastatic disease. Yet, most of those living with metastatic breast cancer (and their loved ones) have been affected by the ride.

Often it is helpful to know these emotional ups and downs are normal. You are not alone. After all, a metastatic breast cancer diagnosis is a life-changing experience. Treatment alone often demands changes in your daily routine, shifts in professional goals and physical losses which can be challenging to reconcile. “Why me” questions and the uncertainty about the future can be overwhelming.

Finding your way through the day to day is an exercise in self-awareness, acceptance, and frustration tolerance. And yet, those with metastatic disease all over the world are not only surviving but thriving as they live with cancer. The tips and ideas below may help smooth the ride a bit for you. Continue reading

Hear My Voice: The Silver Lining in the Malignancy

Susan RosenSusan Rosen writes about staying positive in spite of her diagnosis with metastatic breast cancer. 

 

When I was diagnosed with stage III breast cancer on August 10, 2010, I never questioned the diagnosis. I never asked, “Why me?” I would deal with the diagnosis and treatment and move forward.

Not this time.

In September 2013, my cancer metastasized to my bones, liver and dura (the outer covering of the brain). After more testing, a primary thyroid cancer was also discovered.

I went through a range of emotions. I was angry, I was mad. How could this happen to me when I took all the right precautions? My oncologist reassured me that I did all I could. It didn’t matter.

When my oncologist delivered my diagnosis, he brought up an image on a computer screen. It was the image of my body, all lit up. He looked sad. 
He said the cancer has spread. He was so sorry. My oncology nurse cried. I cried. My husband looked lost.

We then needed to tell our children. My daughter is 19, and a sophomore in college. My son is 15, and a sophomore in high school. It was not easy telling them last year, as they both adjusted to their freshman years. However, we have been sharing all news, good or bad, with our kids since the beginning of this journey.

Within a few weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment. I started chemotherapy right away. I felt weak and tired, but I did not lose my hair! I am now on hormonal therapy and a bone medicine.

I am feeling fine and handling my situation well… most days. I have my moments, especially when I think of my husband and kids.  Continue reading