I am so excited for you all to read Jean’s story. I love her down to earth conversation in this interview, and I felt like I was sitting across from her at a table having coffee, listening, sharing and learning all about how she thrives with metastatic breast cancer. Jean is also a fellow member of the “Hear My Voice Outreach Volunteer team” with Living Beyond Breast Cancer. I hope you find hope and strength in her journey.
Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
Like most busy working mothers, my life was filled with various responsibilities – work, taking care of my family and home, spending time with my husband, running my kids to various school and sporting activities, enjoying friends, etc. Because I was busy and my days were easily filled with things to do, it was my norm to neglect my own well-being. Something I think many of us can be guilty of – a reluctance to put ourselves first. I never thought much about it because I always felt pretty good and considered myself to be relatively healthy.
It had been a very long time since I’d had a physical and at the end of 2013, as part of my New Year’s resolutions, I decided that it was time to get my act together and get my long overdue mammogram and yearly physical. I had scheduled my mammogram for a couple of weeks out, and in the time in between waiting for my appointment, I noticed some changes in my left breast. I never did feel any kind of lump, but began to notice dimples in the skin and that my nipple was inverting. At the mammogram, the technician immediately told me I needed an ultrasound and additional images. By the next day I was having a biopsy and on New Year’s Eve 2013, I was officially diagnosed with breast cancer. In the weeks to follow, I met with a geneticist because of the extensive family history of cancer on my father’s side and soon learned I carry the BRCA2 genetic mutation. My oncologist ordered a PET scan and I learned that my breast cancer was already in many of my lymph nodes and had metastasized to my spine, left arm, and both sides of my pelvis. Talk about going from 0-90 mphs in the blink of an eye and running right into a wall!
Tell us about your current treatment and its side effects.
My advanced stage cancer is hormone receptor positive and HER2-. And because I had the BRCA2 mutation, I immediately had an oophorectomy (ovaries removed) and a double mastectomy soon afterward. My initial hormone therapy was Arimidex, which didn’t produce the results my oncologist had hoped for. I am currently taking another of the AI’s – Aromasin, along with Afinitor. I count myself lucky that I have yet to endure an intravenous or oral chemo with significant side effects such as hair loss, nausea, infection, or nerve problems, etc. My worst side effects include fatigue and severe joint pain. There are mornings when I find it difficult to get my legs moving and to get out of bed. I’m still working full time and for that I’m thankful because it is one more piece of normalcy I’m happy to hold on to for as long as possible. For most of the day, I get around pretty well, but as the evening comes on, I can feel joints beginning to ache again and find myself ready for bed at about 9pm, although good sleep often evades me.
But perhaps the most difficult side effect has been the ups and downs of my liver function because of the Afinitor. While this side effect is not always apparent to my physical well-being, it does result in having to go off of Afinitor for a couple of weeks at a time while my liver recovers. I find this mentally draining because I know the Afinitor adds an extra benefit to the hormone therapy treatment that patients often don’t see when taking the hormone therapy alone. There is a constant nagging going on in your head when you know you aren’t able to take a medication that is potentially helping to lengthen your current treatment or even your life. And, each time I have to wait for the next blood test to see if I can go back on this med again, it’s torture wondering if I’m going to have to forego this treatment altogether to start another. As those with advanced stage cancer know, we are living from treatment to treatment and the longer something works for us, the longer we have before we run out of options.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
I guess for me, the biggest change in my life is that I don’t sweat the little stuff as much as I used to. And, I’m learning to better appreciate the little moments in life – time with my kids, dinners with my husband, good times with friends… all those times that were once easily taken for granted. I can say I’ve learned to stop and savor them right then and there instead of letting them pass away unappreciated.
Having a Stage IV diagnosis as your initial diagnosis also meant that I had to learn to have a new idea about what hope really means to me now. For the few days before I was staged, I was preparing myself to be the “pink warrior” that most of us think of each October. I would have surgery, chemo, radiation, and then after 5 years – I’d be cured. I know so much better than that now. I had no idea that 30% of people diagnosed with breast cancer end up having metastasis later – regardless of their initial stage. Once I found out I was Stage IV right out of the gate, my idea of hope changed to hoping I would see my kids graduate from high school, hoping I would see them graduate from college too, and hoping to dance at their weddings someday. I also find myself hoping I can grow old with my wonderful husband.
How do you live your best life now, thriving with a metastatic diagnosis?
Humor is the key for me. I find it therapeutic when I focus on the lighter side of things. And, believe it or not, even having advanced stage cancer has its moments of odd hilarity. Like having to walk through a parking lot on a busy downtown street with a needle sticking out of your arm to get to the PET scan machine in the mobile semi van (thank God my hospital gown closed all the way in back!).
What makes you most happy, and where do you find the most joy?
I don’t think having breast cancer has changed what makes me happy (family, friends, music, hiking, traveling), but it has given me permission to allow myself to do and enjoy these things more often. I no longer feel guilty about doing things in the here and now – because that’s what I’ve got – this moment in time. I refuse to miss opportunities to create and share all the good memories I can with the people I love.
People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing people have said to you in regards to having cancer?
I was at an American Cancer Society event and was speaking with a woman who was just finishing her radiation treatments. She was diagnosed with Stage II breast cancer and was saying that she felt very fortunate that she didn’t experience many side effects from her surgery, chemo and radiation. You could see the relief in her face about being “done” with her treatment.
I then explained my situation and told her that I would be in treatment for the rest of my life. She looked at me quizzically and said, “You can be cured… you just need to have faith.” As far as I’m concerned, that is one of the worst things someone can say to a Stage IV person. I know I have faith and hope. And I believe that accepting the facts about my diagnosis does not make me any less faithful or hopeful. It was a real slap in the face. I tried to explain further to her about how I felt, but she just kept telling me I needed to have more faith. Ugh!
What do you find is helpful for those wanting to encourage and help us but yet not knowing how?
Just treat me the same as you always have! I’m an open person and I’m not afraid to share with you what is going on with me – so if you want to know, just ask. That said, if you don’t want to talk about my cancer – that’s fine too. But don’t ignore my situation or me. It’s okay to feel uncomfortable about knowing what to say to me. Just be honest about it and don’t change how you act towards me.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
Yes, absolutely. I know this because I have tried to explain what it means to have advanced stage breast cancer and people (including those with early stage breast cancer) just don’t get that someone will have to be in treatment for the rest of their lives. We need better communication and funding spent to educate people about metastatic disease. We need one of the heavy hitters, like Komen, to focus a big campaign on metastatic breast cancer like they’ve done around prevention! They’ve got the presence to really educate people and yet they miss that opportunity each Fall.
What do you want people to know about YOU and your life living with this disease?
That I’m doing okay, that I’m not broken, and that I’m thankful to be here. What I have going on sucks and I certainly have bad days because of it, but there are lots of people in this world dealing with difficulties in their lives. I have a good friend that has MS – and I never knew it until recently. She is one of the strongest people I know. For me, she’s an inspiration. I just want to deal with my diagnosis with as much grace and dignity as she imparts every day. To me that means being honest with yourself and those that care about you and allowing yourself to feel how you feel (good, bad, angry, happy or sad). We should all strive for this because this is what gives us our humanity.
Do you think our cure is near?
I hope so! But I also know that we won’t get there without more research dollars. It’s frustrating to me that funding has consistently been reduced for researching cancer over the past few years. I’d like to think that we can someday look back and say we figured out making cancer a treatable, chronic illness. One that people can live with for a long time and still be able to enjoy good quality of life. I also think it’s important to remember that breast cancer comes in many different types – I don’t think there is one simple cure and that we need multiple paths to cure such a complex and sneaky disease!
What is one “action” point everyone could do TODAY to promote awareness of MBC.
Use social media to let your friends and your loved ones know some of the important facts and myths about MBC. There are so many wonderful resources that could be shared to educate people. You don’t have to be great blogger or social media whiz kid to point someone to some of these resources by simply sharing a link.
What are three words that describe YOU and what do you want our readers to KNOW about you.
Live Another Day!
I’m happy to take this life one day at a time now… just give me one more day and I’ll be happy because I know how precious each one is!
Do you have a favorite poem, song, quote, or work of art that you would like to share with us.
I love the OneRepublic song, “Good Life.” It’s a great message and when I hear it I feel hopeful and appreciate of this beautiful life I’ve been given… no matter how long it may last.
Jean is 49 year old wife and mother of 2 boys (13 and 10) who works in the legal department of a large healthcare IT company handling their intellectual property matters. A Colorado native that loves hiking and enjoys the serenity of nature. And… during the summer, Baseball is our life. Some of her happiest times are spent watching her boys play and her husband coach!
That’s it for this week’s testimony. I hope you enjoyed it. I love sharing others stories because I believe they are powerful advocates for engaging change. More needs to be done for finding a cure for Stage IV metastatic breast cancer. We need our voices heard. If you would like to share your story of thriving with MBC, please email me: Lkailani@gmail.com. I will send you all the details.
Until next week,