Married, mom of two boys, natural caregiver
ABOUT CHRIS, IN HER OWN WORDS:
- Oldest of three siblings—which is a nice way to say I try to control a lot of things I have no control over. It also means I’m a caregiver.
- Passionate in helping people—community supporter, church member, wish-granter are all words friends and family have used to describe me.
- Worked in healthcare administration—and loved it!
I’m the oldest of three siblings and I’ve always felt that it was my obligation to live up to those “oldest” sibling responsibilities, which is a nice way to say I try to control a lot of things I have no control of. But it also means I’m a caregiver. I’ve always been passionate about helping people. Community supporter, church member, wish-granter—these are all words friends and family have used to describe me. I was a candy striper in a hospital (that shows you how old I am!) and volunteered in a nursing home before I was old enough to work. I even became a Girl Scout, and, as one friend pointed out to me, “Once a Girl Scout, always a Girl Scout.”
These are things I wanted my two boys to grow up seeing and doing—I wanted them to be raised helping people without expecting anything in return, and I wanted them to know you can go live your dreams.
I think we can lose sense of these values as we go through life. Before my diagnosis, I was really healthy and I fell victim to that routine we all get in—get up, go to work, make dinner, go to bed, and do it all over again the next day. I worked in an academic healthcare organization, one of the largest in Southeastern Wisconsin, for 14 years. My parents always asked why I worked so much outside of my normal office hours. They just didn’t understand why I didn’t stay home and spend more time with my kids, and that was something I found hard to explain. Even though I’m the oldest sibling in my family, the physicians I worked with on a day-to-day basis were like my older siblings.
My administrative job focus created my “caregiver” role with the physicians. I don’t think I did much, but I did make breakfast bakes for their board meetings and passed out gift cards on their birthdays. Who doesn’t love food for a 6:30 a.m. meeting or a “surprise” on their birthday? And over the course of time, I became a resource and a liaison between the physician group and our executive team, which further cemented the bond I had with our physicians.
However, even though I worked in healthcare administration (and loved it!), I only went to the doctor for a sinus infection or the seasonal cold. But one winter, my chest felt heavy and my back hurt. I went to the doctor that morning and, after a quick exam, I was told it was my back and I needed to be seen by a chiropractor. After months of being treated by a chiropractor and still having the same symptoms, I sought another opinion from a second clinical physician.
This physician took the time to listen to my symptoms, ordered a CT test, which showed an abnormality, and immediately requested I go to the hospital for an MRI. That night, they called to tell me nothing was pinching my spine, but I needed to follow up with an oncologist. With my head spinning, I wasn’t sure why I needed to follow up with an oncologist. My husband was diagnosed with cancer 2.5 years prior and was still going through treatments, so I knew before he went to see an oncologist for the first time, he needed a biopsy, pathology tests, etc. I only had a CT and an MRI—what could that possibly show?!
Coping With Diagnosis As A Family
I spent the weekend with my sister and two of my closest friends who tried to console me, but when Monday came and I saw the oncologist with my husband, he told me something that took me weeks to understand. He said, “I believe you have breast cancer that spread to your bones and it is incurable.” What does that mean? Nobody in my family ever had breast cancer. I’ve had mammograms in the past with no issues. I only had back pain. And my summer was booked—I showed the oncologist my summer schedule; I literally had no time for cancer! The doctor continued to talk about what tests to expect in the upcoming weeks, but I wasn’t retaining anything. It felt like a bad dream; I just wanted to wake up and go back to my normal life.
My husband and I drove home in silence. I still didn’t understand how I had gotten to that point. When we got home, we went into our bedroom and cried. I kept repeating that I didn’t want to die, I wasn’t ready. My husband reassured me that we would fight, but deep down, I felt I was dealt a death sentence and I kept asking myself why this was happening to me and my family.
After calling family and some close friends, we immediately turned our attention to our two boys. My oldest was 13 at the time; my youngest, 9. How, what, and when do we tell them? I didn’t even understand what I had or what incurable meant. We just went through this when my husband was diagnosed, and one of the first things my youngest had wanted to make sure of was that I wasn’t going to get sick, too. How can we be sitting here again, less than three years later, wondering how to tell our boys that their mother now has cancer, when I didn’t even understand it myself?
As that week progressed, I learned more about my diagnosis. I found out incurable meant Stage IV and spread to the bones meant that my cancer was metastatic. We had to tell our boys the truth. We sat them down and told them everything I was going through. As you can imagine, they took it hard. My youngest just wanted to know if and when I was going to die; my oldest tried to keep it together and really didn’t ask many questions, but I could see the fear in both of their eyes. This all took place the week of the 4th of July, so they were with me every time the phone rang. They would see me start crying every time I talked to the hospital or my healthcare team, and then they would start crying as well. Even though those were the darkest days, it was better that we were able to communicate and share our concerns and feelings from the onset.
I spent most of that summer crying, holding my boys, and not wanting to see or talk to anybody. Knowledge is power, and I just didn’t have the education at the time to understand everything. I went into my appointments with a lot of doubts and always looked for answers that I later found out nobody had.
That was still the case when my oncologist put me on an oral treatment plan with IBRANCE in combination with letrozole, which is an aromatase inhibitor. My oncologist thought the plan would work for me in treating the progression of my HR+/HER2- metastatic breast cancer; I didn’t know what to think about it at first. But I needed to put my control into someone else’s hands. My brain was in such a fog; I’d walk into my oncologist’s office and walk out crying, but he patiently explained IBRANCE’s possible benefits and common and potentially serious side effects, and he thought I was a good candidate for this first-in-its-class medication.
My doctor and I have been happy with my results while on this treatment plan. However, I have experienced side effects including lower white blood cell counts, headache, and fatigue. I’ve been working with my doctor on my dosing, and I make sure to take it as prescribed. But that’s just me—other patients might experience common side effects including infections or nausea. Another oncologist explained it to me in laymen’s terms. He said, “You can give five people the same medication and all five people may react in a different way. You just need to find the right medication and dose for you.”
As my relationship with my healthcare team grew, I eventually became more educated and started to truly understand my oncologist’s help and dedication. I also became much more open to the help and support that surrounded me daily since my diagnosis. Asking for help has always been the hardest thing for me. I’ve always been the caregiver and the one making arrangements or doing the planning. When I was diagnosed, I didn’t know what to do. There were days I wanted nothing more than to stay in bed and not be bothered by anyone. My mother moved in as soon as I was diagnosed, to cook, clean, and help me with everything I no longer wanted to do. On the days I didn’t want to get out of bed, my mom, close friends, and my own family would tell me to get out of bed and stop the pity party! Start living!
It is easy to lose yourself in a diagnosis like MBC. You need people to help you get through this difficult time. And I have been very fortunate to have many people who did just that, whether it was by making my family meals, going to appointments with me, or dropping off school supplies for my boys when I didn’t have time to go school shopping. The physicians from the organization I recently retired from even presented me with a cashier’s check and a trip to Ireland to live out my dream of going there with my husband. They said this was a gift of appreciation from everyone I helped over my years there. To this day, it still brings tears in my eyes. How do you go about thanking everyone for that? But it just shows that you don’t realize the impact you can have on people’s lives.
Again, I realize I can’t control my cancer, but I can still control the same thing I’ve always controlled—my impact on other people. Instead of acting like a victim, I’m now trying to educate myself and others on metastatic breast cancer and live out my dreams. I don’t know if I have two years or 20 years, but I’m going to make the most out of the time I have and try to live the fullest life I can. I want to show my boys there is life after a cancer diagnosis (even a terminal diagnosis). I want them to be proud of what I accomplished, and I want them to follow in my footsteps of helping those in need. Everybody will need someone strong in their life and being that person is more rewarding than anything else they could earn over their lifetime. I want to be remembered as someone who helped make the world a better place.
Someone once described cancer as a river, with many twists and turns, forks, rapids, and even some standing water. It’s how you navigate those changing waters that matters. So remember to reach out for help when you hit the rapids and bask in the standing waters. Nobody will know when their day will come, but we should not be defined by a diagnosis.