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Metastatic Breast Cancer

Sour Fruit

Have you ever admired something only to find out that it all reality it was broken inside? I can remember admiring my neighbors fancy brand new car, with its physical allure. My admiration was misleading, as I found out later on that it was a “lemon” meaning it came from the factory with malfunctions. This vehicle gave my neighbors trouble after only a few months of purchasing it. Even through all of the troubles they were receiving from their lemon, they still had hope that it would get better in time. Living with Metastatic Breast Cancer, I often feel like a lemon; vibrant and seemingly fine on the outside but like I have gone sour within.

While my son was in elementary school, I was working evenings. I was able to take him to school each morning and occasionally on “special” mornings, we would stop on the way in and grab McDonald’s breakfast. One morning, my son was taking a sip of his Mc D’s orange juice and he looked at me crying that “it didn’t taste good”. First, I felt the orange juice to make sure it was cold. This particular morning, it was very cold. Continuing my investigation, I took a sip of the cold orange juice, to have my breathe taken away by the sour juice that flowed into my mouth. The juice was so old and soured that I gagged, over and over. It looked perfectly refreshing and healthy through the bottle but its insides were just the opposite of how it appeared.

My neighbor brings “the grass is greener on the other side” saying to life, often complimenting me on my bright, healthy, green, grass. I simply smile, knowing how my husband struggles to fertilize and maintain the appearance of the yard while keeping it alive. My husband sees the grass loosing it color as it dies and fades to brown in new areas often and we water and tend to the grass to bring it back to life as another area begins to die. That’s how I feel with my fight for a healthy, vibrant life, while living with MBC. Even with my treatment plan, the cancer continues to spread to other parts of my body. It has spread to the lymph nodes in my neck, chest wall and pelvic area.

There are countless amounts of women who are struggling to keep their vibrancy, health, and liveliness as they battle day to day living with MBC. They may have times where they appear vibrant, healthy and lively but inward their body is fighting a war against itself, ravaging the woman along its path.

Top 7 Loving Tips for Caregivers

1. The most important thing for a caregiver is to be supportive and understanding. There will be times when the cancer patient may be grumpy and irritable; try to remember it is not directed at you personally.
2. Learn as much as you can about her cancer and treatment plan. Go to all medical and treatment appointments. Take notes and ask questions.
3. Make a binder and put all lab and screening test results in page protectors in that binder. Become familiar with which lab tests should be done each time. Ask the nurse or technician to check that they are on the list. Sometimes a test gets left off the orders by accident.
4. Familiarize yourself with insurance coverage and check the Explanation of Benefits from the insurance company. Sometimes a treatment is denied because the doctor did not provide the right documentation. This can be fixed quickly if you contact the doctor’s billing office. 

5. Let the social worker at your hospital help. She can help resolve billing problems and also steer you toward organizations that can help with living and medical expenses or arrange fun outings.

6. Take care of yourself. You need to stay healthy and strong to help your loved one.

7. Ask for help when you need to. No one can do this alone. 

Be Your Best Advocate

In July 2013, Kristin Todd was a happily married, 32-year old nurse practitioner enjoying the 34th week of her pregnancy when she discovered a lump in her breast. Her prenatal appointments were scheduled so that she would have a chance to meet each doctor in the practice prior to her delivery, and her next appointment was with an obstetrician she had not seen before.


Upon meeting the new doctor, Kristin reported that she had found a lump in her breast, but after a physical exam, the doctor dismissed it, saying she was too young for breast cancer. The doctor also said that they would wait until after her baby was born to do any kind of diagnostic testing anyway.
As a medical professional herself, this answer didn’t sit well with Kristin. She knew this wasn’t the case. She contacted herprimaryOB-GYN in the same practice and explained her concerns. This time, her doctor agreed that further testing was warranted and scheduled her for an ultrasound and biopsy. The results came back- Kristin had invasive ductal carcinoma (ER/PR+ and HER2-). 


In the weeks leading up to her delivery, Kristin had a lumpectomy and lymph node dissection. She was induced at 37-weeks and gave birth to a healthy baby boy, Logan. At only three days postpartum, Kristin had a port placed for chemotherapy and underwent her first PET scan which revealed liver and bone metastases. This was certainly not the way any new mother would want to spend the first few days with her baby.


Kristinreceivedsixrounds of chemotherapy and had her ovaries removed. After the chemotherapy, she entered NED (no evidence of disease) status for about 4 months but then experienced a recurrence in her bones during the summer of 2014. She received radiation to the spots on her rib and spine and then enjoyed NED status for another 10 months. This past fall, however, Kristin was diagnosed with another recurrence of her liver. 
Kristin credits her family for helping her throughout this experience. Her father, a physician, was instrumental in helping Kristin seek out excellent medical care and expert opinions. Her mother and mother-in-law both came in from out of state to help care for baby Logan. Her sister, cousins, and friends all pitched in to help any way they could.


Today, Kristin is hopeful that her upcoming scan will show resolution of her liver metastasis, having completed four rounds ofDoxilchemotherapy. She looks to her son as her light and motivation in life. “I do believe in the power of the mind,” she states. “I have so much love and support around, along with my own positive outlook that I know I can get through most anything.”

Receiving a diagnosis of Metastatic Breast Cancer can be overwhelming. So much emotion, so much information, so many decisions- it may feel more than you can handle. But we want to help you find that inner strength and reclaim your power.


Kristin’s story provides some great examples of ways you can advocate for yourself as you navigate your way through your changing life. Let’s take a closer look at them. 


Take an active role in your health care In the course of your treatment, you will often hear the term “health care team” and that may bring to mind the many physicians, nurses, and therapists that you encounter. Make sure you aren’t forgetting the most important member of that team- YOU! You need to feel confident in and comfortable with your plan of care. Don’t be afraid to ask for a second opinion or to request an explanation if there is something you don’t understand.  


It’s a good idea to keep a running list of questions that you can bring with you to appointments.  It’s not uncommon to forget things during the hustle and bustle of a doctor’s visit, so writing things down will help.  

Kristin recommends taking a step back and re-evaluating what makes you happy, what is truly important to you. In her case, she finds that her patients bring her a lot of joy, so she has continued to work part-time. Staying physically active and meditating daily keep her focused and calm. Kristin also keeps a daily gratitude journal. “It helps to remind me that during my really down days, there is ALWAYS something I can find to be grateful for“, she states. Keep doing the things you love and surrounding yourself with those you love. You may find that it’ll help get you through each day.  

Educate yourself The more educated you are about your disease, the better able you will be to take an active role.  It is really important that you take the time to learn as much as you can. This will allow you to better communicate with your team and make decisions that are right for you. 


There are some really great resources available to help you in this regard. 


Accept Help Advocating for yourself doesn’t mean that you have to do everything on your own. Sometimes the best thing you can do for yourself is to admit that you can’t do it all. Asking for help when you need it is truly a sign of great strength.  

 
Can your mother come help watch the kids? Great! Is your neighbor offering to make dinner for your family this week? Take her up on it!  
Understand your rights and your benefits If you are a working woman, you are going to have to make some decisions regarding how you want to proceed.  Some women may choose to keep working as long as possible, scheduling their appointments around their work hours, while others may opt to take short or long-term disabilities. Discuss with both your employer and your health care team what options are best for you.  Make sure you understand what you are entitled to regarding benefits and payment during this time.  


When it comes to health insurance, it is important to be aware of your policy and what is covered.  If you have any questions regarding your coverage, don’t hesitate to contact Human Resources or the insurance company directly. With extensive medical treatment, you want to be sure you understand all deductibles, co-pays, out-of-pocket maximums. Start a file with all of your paperwork, so that you can refer to it if any questions or problems arise.  


Take care of your whole self During your cancer treatment, you focus so much on your physical well-being, but you don’t want to neglect your mental and emotional needs. It is normal to experience a lot of anxiety and stress, and you may want to find someone to talk to during this time, whether a therapist, a support group or a friend.  

Living for Now

July 23, 2013 at 2:00 pm is when my life changed forever. I will always remember that moment when life as I knew it stopped, and I started planning for my physical demise. I was 32-years old and 34 weeks pregnant with my first child, when I was taken into an exam room to receive my breast biopsy results from a lump I found. I was accompanied by not one, but two nurses as my husband and I sat waiting for the interventional radiologist. The moment he walked in, I knew the news wasn’t good. The normally cheery and engaging doctor couldn’t even make eye contact with me. As he began talking, there were no mincing words. He came right out and said it: “This is a breast cancer.”

I didn’t hear much after that. I was in shock and disbelief. My mind immediately went to a dark and sad place. Before my baby was even born, I was thinking about all of the milestones of his I would miss and all the memories we wouldn’t be able to make together. I had breast cancer. And most likely Stage III breast cancer due to the size of the tumor and the likely involvement of lymph nodes. Little did I know, the news would get worse.
But before it got worse, we got to experience the best moment of our lives on August 15th when Logan Kristopher was born. In the midst of so much fear and sadness in the past few weeks, we had a few days of happiness as we soaked in our first moments as a family of three.

Four days later, I had my first PET scan for staging purposes. While in recovery from having my port placed with my husband by my side, my surgeon came in to tell me that the cancer had spread to my liver and multiple bones. I had Stage IV metastatic breast cancer. Once again, I didn’t hear or comprehend a whole lot of what he said after that. But, there was one thing he said that I did hear which resonated with me. As we cried in disbelief, he knew we must be thinking about how little time I may have left. My surgeon, who had a compassionate bedside manner, gently took my hand, looked me in the eyes and said, “Kristin, you are here NOW. Go enjoy a date night out, go to the movies, take your son for a walk.”
At the time, it sounded almost callous. I thought what nerve for him to tell me that I have Stage IV cancer and then in the same breath, tell me to go enjoy a night out like nothing was wrong. Was he crazy? Was he being patronizing? My life was over as I saw it. How could I ever enjoy the simple pleasures of life again with this diagnosis looming over my head? It seemed near impossible in that moment.

The weeks and months that followed proved to be some of the most difficult of my life. I was sad. I was angry…really angry. I welcomed sleep because at least when I was sleeping I wouldn’t be thinking of how little time I may have left with my son and family. When I woke in the morning, I would experience a brief moment of thinking it was all a bad dream, and then reality would set in and I would retreat back into darkness. All I could focus on was the future and how much of it I may not get to experience.     I can’t remember when exactly it happened, but at some point several months later, a light switch went off and I had that “ah ha!” moment, as Oprah Winfrey has described. I suddenly understood what my surgeon was talking about the day he told me my cancer had spread and oh, by the way, go have fun! He was RIGHT! I WAS still here, at this very moment in time, so why was I not getting busy living? I was so focused on the uncertainty of my future that I was missing out on the present. That’s when I made some changes in my life.

Here are a few things I do regularly to help me live in the moment:

Meditation. I have never meditated before but my husband and I started doing it together every day with the help of an App called Headspace. Mediation not only helped ease my anxiety, but it also helped me to learn how to live more in the moment and to experience life as it is right now.
Exercise. Exercise has always been an important part of my life and may be even more so now. Nothing makes me feel more “normal” or alive than a really great workout. The more I move, the better I feel physically and mentally.
Do what you love. I am a nurse practitioner and I have been working with heart failure patients for many years. I love my patients and I love what I do. It is part of who I am. There was no question that I wanted to return to work after I finished my initial chemo. When I returned to work, I found that not only did I regain my sense of purpose, but I was able to focus on other people’s health issues which was a great distraction from my own. I know working is not for everyone, but you should do what brings you joy and purpose.
Practice gratitude. This is something I just recently began to practice on a daily basis by keeping a daily gratitude journal. I have found that the more I focus on things in my life to be grateful for, the more the fear, sadness, and negativity seem to just melt away.

“It’s been a tough road but my metastatic diagnosis has taught me some valuable lessons. I believe I live a much more fulfilled life now because of the steps I’ve taken as mentioned above. I am enjoying living in the present with my son who is now two and a half years old. I have gotten to experience many of his milestones which I am so grateful for every single day!”

Managing Your Life

Four years ago, Tricia Russo seemed to have it all going for her. Having just turned 30, she was happily married, living in Los Angeles and working a dream job in development at Walt Disney Motion Pictures. She and her husband were excitedly looking to the future, anticipating the purchase of a home and beginning a family.

Then Tricia found a lump on her breast.At her first visit to her general practitioner, she was told that no testing was needed- she was young, had no family history and no other symptoms. She went to her gynecologist for a second opinion and was told the same thing. But a few months later when she started experiencing pain in her breast that extended into her armpit, she went back to her GP and was sent for a mammogram, ultrasound and biopsy. Tricia had Stage IIb breast cancer.

Tricia was ready to jump into treatment, but with her desire to have children one day, she first consulted with a fertility specialist about harvesting her eggs. She was advised, however, that the risk of delaying treatment was too great. She began a series of 12 chemotherapy infusions, starting with AC (Adriamycin and cyclophosphamide) chemo and ending with T-Taxol. In May of 2012, Tricia underwent a single mastectomy, which was then followed by weekly radiation.

Tricia was lucky to have a lot of support during her treatment. Her family from New Jersey rented a small studio around the corner from her place in LA, and members took turns flying out to help. She was able to continue to work, and her oncologist was conveniently located across the street from her office.

Tricia completed her treatment and couldn’t wait to move forward after one more year of hormone therapy. However, in February 2013, while visiting her family in New Jersey, she began experiencing extreme headaches. An MRI revealed a brain tumor and she was rushed into surgery. Partial radiation then followed.

Now with a Stage IV diagnosis, Tricia knew her life would never be the same. She would no longer be able to have children of her own. She made the decision to leave her stressful career and move to New Jersey to be closer to her family, while her husband remained in LA.

For a few years, Tricia worked for her family’s real estate company in New Jersey. She and her husband made the best of their bi-coastal marriage, with frequent flights back and forth as well as meeting in exciting locations like Peru, Paris and Ireland. They continued to think often about starting a family.
For a period of time in 2014, Tricia considered going against medical advice and going off of her medications so she could attempt in vitro fertilization. But before she could proceed, she experienced another recurrence in her brain and underwent gamma knife surgery. During this time, Tricia decided to start filming her journey.

Tricia has now been stable for almost two years. She is back living in LA, in a house that she and her husband recently purchased. She continues to take Tamoxifen daily and receives Lupron injections every three months.  She is monitored with brain scans four times a year and a mammogram and MRI of the chest, abdomen and pelvis once a year.

In the last year, Tricia and her husband found an egg donor and a surrogate and are hopeful to make their wish for a family come true. They have also started a non-for profit organization called the Cyan Gray Hope Foundation to help fund their documentary, detailing their story through cancer and fertility challenges. Tricia is hopeful that this film will act as a resource for other women like her, one that wasn’t available to her when she was searching for information.
A dramatic change from her old 12-hour workdays, Tricia now works from home. She still does brochure work for her family business remotely, but dedicates a good portion of her day to producing her documentary. Tricia recognizes the importance of fueling her body with proper nutrition and exercise like yoga. She teaches meditation and vision boarding workshops to others. She takes time to enjoy dinners with friends and snuggling her two puppies.

Tricia advises other women with Metastatic Breast Cancer to listen to their hearts and maintain hope as they live out each day though it may not always feel easy. “Sure, fear of mortality creeps in here and there,” she says, “but I have found that if I focus on all the good in my life and the hope that I still have for my future, the fear monster goes away.”

A diagnosis of Metastatic Breast Cancer is life-altering. From big things like your career and family to the minutiae of your daily routine, you will likely find that you need to step back and re-evaluate your life. Yet as Tricia’s story so powerfully points out, even though things may change, you can still live a full and meaningful life.

Let’s take a look at some of the areas you will want to address as you create your new normal and learn how to manage your life with breast cancer.


Organize your medical affairs

  • Create a calendar, whether written or electronic, to schedule both medical appointments and daily affairs.
  • Set a reminder on your phone or watch for taking medications
  •     Set-up pharmacy auto-refills to keep prescriptions filled
  •     Sort your meds into a daily pill dispenser at the start of each week

As you probably know, keeping track of tests and appointments, medications, medical records, and payments can feel like a full-time job. That’s why it is important to create a system that works for you. We have mentioned before that it is a good idea to keep all of your medical records together in a folder or binder. 


Some other things to consider include:

Dealing with medical bills can be another source of stress. Unfortunately, it often falls on the patient to make sure insurance claims are handled properly, so make sure you understand your coverage and review your bills carefully. When you are in the throes of treatment, this may seem overwhelming, so ask a family member or someone you trust to help with this if you need it. And if medical costs seem to be more than you can afford, please seek assistance. No one should ever have to forgo treatment because they cannot afford it.

Nurture your relationships:

It is normal for your relationships to be affected while dealing with the physical and emotional strain of metastatic breast cancer, but try to not let yourself push others away. Draw your loved ones near, share your feelings, and use them as your support. If you have children, this can feel extra challenging. As a parent, your instinct is to protect them from pain and shield them from hard times, but know that they are not immune to what is going on around them. Make sure your children know that they can express their feelings. Do your best to keep them aware of what to expect and what might change.



Fuel your body and mind:

What you put into your body is more important now than ever. Help strengthen your body during and after treatment by fueling it with a healthy diet. You can click here to find more information about providing your body with the nutrition it needs. Your mental health is just as important. From yoga to meditation, to church or support groups, find what keeps you mentally balanced and make it a priority.

Evaluate your career:

You may need to make some decisions regarding what you want to do or are capable of doing job-wise. Does your career bring you a lot of joy, or does it cause unnecessary stress? Are you able to work from home or take off on treatment days? This answer will be different for every woman, but the important lesson here is to find the proper balance. It might be time to make a change, and that is OK. Or perhaps you might find that you are already right where you want to be.

Look at the big picture:

What is most important to you in your life? What is on your bucket list? What do you still want to accomplish?  You don’t have to do it all tomorrow, but start taking active steps towards it. Make the most of every day by filling it with moments to cherish.  Let go of the things that are bringing you down. Celebrate your life and the lives you have touched.No one ever said living with Metastatic Breast Cancer is easy, but there are certain things you can do along the way to lighten your load. Continue to refer to the Tigerlily Foundation for support and education along the way. We are committed to being here for you.