MY LIFE

I’d like to say last week was an unprecedented week of losses in the metastatic breast cancer community, but I’d be lying. We have been rolled by these waves before. And god knows we will continue to see our friends die until science catches up with cancer, that wily beast.
Science is not there yet. Cancer is not yet a chronic condition like diabetes or heart disease or even HIV. Friends whose disease looked just like mine on paper didn’t respond at all to the same drugs that seem to be keeping cancer at bay for me. When I asked one researcher why that is, she said, “We’re still trying to figure that out.”
I am one of the lucky few, for now. I am an outlier. I have had no evidence of cancer for more than 2.5 years, since six months after I started a targeted antibody-drug conjugate that goes after cancer but leaves the rest of me relatively unscathed. I am so grateful to science for that. I still don’t have any eyebrows or energy most days, and my chemobrain lingers years after Taxotere and Carboplatin. But I am not dying of cancer at this moment.
I have been to friends’ funerals, taken lasagna to a grieving widower and his preschool-aged children, had what I’ve known will be the last conversation with a friend (but held it together until we hung up and then cried my eyes out), and I’ve hugged a powerful force of a woman only to have her be gone the next season. I know firsthand how short life can be. There are dozens of holes in my heart.
I fill these holes by throwing myself into life with my little family, by writing, by advocating and participating in the greater metastatic community, by adopting a puppy when what I really want (but can’t have and don’t have the energy for because of cancer treatments) is another baby. Then I get short-circuited because of exhaustion and grief, and snap at the dog for not getting back inside fast enough after I’ve let her out to pee. It is 90 degrees out at 7pm, the mosquitos are active, and I’m tired of standing at the door, waiting.
I have more anxiety than I know what to do with. I am angry. It is not the dog’s fault.
I feel guilty for being alive, for making it. Have I made it? I will know when I die of something else. I try to channel this strange mix of guilt and gratitude into action. Can one voice make a difference? Can mine?

I try to live in the present and not take for granted that I get to parent a frequently cranky almost-kindergartner. I get to plan meals and subscribe to magazines without too much fear that I won’t be around for the entire twelve month period. I get to think about summer vacations and attend my 20-year high school reunion this year. (I still cannot find it in me to appreciate getting to do laundry.)
It is an odd place to be, having been diagnosed with a disease that typically kills in less than three years and then faring remarkably well. I am always waiting for the other shoe to drop, not sure when my luck might run out. At the same time, I wake up in awe of the fact that I am still alive nearly five years after my diagnosis. As Mary Elizabeth Williams put it in her memoir on surviving metastatic melanoma, A Series of Catastrophes & Miracles, “This is the cruel reality of successful cancer treatment. You want so much for everybody to get what you got, and for it to work like it did on you, but that’s not how it happens. Instead, getting better often feels as random as getting sick was.”

I want this “getting better” kind of outcome for everyone.
Instead, my chest aches for the 41,000 men and women who will die of breast cancer this year in the U.S. alone. How do we begin to quantify this number in ways that will express our urgency? 112 every day. Approximately 194,750 since my diagnosis.

I am furious about my friends who’ve died too young. I am scared, too, for all of us diagnosed with late-stage cancer. In the back of my mind looms the shadow of this beast, and the burden we all carry because of it, until the science catches up, until our friends stop dying.

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.

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. 

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.