Sadly, Kitty passed away from metastatic breast cancer on October 6, 2017. This is the story she shared.
When I tell someone I have mBC, I find one of two reactions. Either their eyes fill with tears as they say, “No, not YOU!” Or their eyes drop to my chest as they try—poorly—to conceal their curiosity. Yes, the girls are still there. And to get all the other typical questions out of the way: Yes, this is still my own hair; my weight is normal, thank you; and, yes, I’m working full-time. I want to. As for the tears, I’d be lying if I said I haven’t felt the same way.
My metastatic breast cancer diagnosis was so unsettling because I had recently—and finally—been considered healthy. Before that, there were several issues that threatened to limit me, including an atypical immune system and cyclical cytopenia. All of my early health issues were unexpected and involved long, convoluted paths to diagnosis. As my physician friend put it: “When you hear hoof beats, in Kitty’s case expect a zebra, not a horse.”
For several decades, I had enthusiastically served others in my role as a pastor’s wife, but as those frustrating health issues emerged, I withdrew and my world shrank. One test led to another, everything sped up, and I lost control.
Then I met three women who helped me regain some sense of control. Our family had just moved to a remote Ohio town so my husband could start a new career, but that job required him to constantly be on the road. Our three children were teenagers and I was physically and mentally worn down. Desperate to break from my reclusive lifestyle, l reached out to these women and we bonded. We helped each other focus on the positives, and that inspired me to take action. I changed my environment and diet, and for quite a while those ailments of the past improved.
In 2010, I followed through on a promise I made to my daughter and general practitioner (GP). I got a mammogram even though I really didn’t want to have any other medical procedures. Then I had another mammogram, and another, and a needle biopsy. When I finally spoke to the breast nurse at the center, she told me, “You have DCIS—ductal carcinoma in situ—in all quadrants of the sample.” I opted for a lumpectomy, and no other signs of cancer were found. I considered the DCIS a hindrance rather than a roadblock to my well-being.
Despite the lumpectomy, it was recommended that I should receive the full seven weeks of radiation. Meanwhile, my husband received a promotion and relocated to Memphis, so I was also getting the family ready for another move. Thankfully I had my trio of friends. Their encouragement was the silver lining that shielded me from those passing clouds.
A Diagnosis And Some Answers
When we did move, I discovered a Mid-South utopia: perfect weather, receptive neighbors, and a fabulous church. No one knew about any of my past medical problems. For the next three years, I quietly followed up with an oncologist before we both agreed I didn’t need to see him anymore. This new happy, healthy era culminated with my employment at the District Attorney General’s office as a receptionist. The only issue was my left leg was catching around the hip, but I attributed it to arthritis or my inguinal hernia.
In July 2015, the hip pain sent me to the ER. After bloodwork and a CT, the doctors weren’t quite sure what was wrong and decided it must be a gynecological issue. I begrudgingly endured a parade of assessments that I didn’t believe were related to my problem. Periodically, I’d see my GP for maintenance and told him of my increasing debilitation. Eventually, he referred me to an orthopedic surgeon.
While I waited for that appointment, I attended a retreat and experienced profound fatigue. The next morning, when I picked up my year-old granddaughter, my entire back seized up. Soon, I woke with painful breathing and swelling around my ribs.
The orthopedist appointment finally came, and the physician’s assistant recommended an MRI for clearer imaging. That was Tuesday. Wednesday, I listened to a voicemail from my doctor’s office. They wanted me to come right in.
My doctor wasted no time in telling me that the MRI indicated metastatic cancer. It could cause a fracture of my hip joint, which I needed to have surgically reinforced as soon as possible. The world seemed to slow down and my thoughts crawled. I’d written off my previous DCIS as “not real cancer.” I didn’t feel like someone with metastatic cancer. But eventually, things started to swirl.
It was then the end of December and a bone scan showed widespread involvement and, given my history, my surgeon strongly suspected metastatic breast cancer. A biopsy of my hip confirmed that diagnosis. The oncologist I’d seen when I first moved to the Mid-South was called in. He said mine was “a weird case,” then recommended a radical mastectomy, aggressive chemotherapy, and radiation because this was Stage IV cancer. The last stage.
Treating My MBC
On December 31st, my husband and I sat down with my oncologist. He reassured me that mBC was not my fault. I didn’t miss anything, eat wrong, drink wrong, or think wrong. Enthusiastically, he referenced the major strides in mBC research. “Although the cancer couldn’t be cured,” he told me, “that doesn’t mean there aren’t any treatments.” So we asked him, “What are our options?”
Tests had indicated my particular breast cancer was HR+/HER2-. After going over the potential benefits, along with common and serious side effects like low white blood cell counts or infections, the doctor said he thought IBRANCE, along with letrozole—which is an aromatase inhibitor—would be a good option for me as a first-line treatment. My husband and I decided to go ahead with IBRANCE and letrozole as my treatment plan.
Returning to work required adjustments. Even though I didn’t have that much hip pain post-surgery, I had to use a walker to get from my car to the office. My coworkers didn’t distance themselves. Not only did that make me smile, it helped me realize that my diagnosis didn’t need to be an awkward secret; I just needed to be direct and intentional with how I inform others. Go ahead, look at my chest awkwardly. Get tears in your eyes. I’m still me, and we need each other.
My oncologist and I both agreed that I did pretty well using IBRANCE in combination with letrozole. However, I did experience side effects, including a drop in my white blood cell counts (after which my dose was adjusted), fatigue, and night sweats. Just keep in mind that these were my experiences and others may respond differently. I stopped taking IBRANCE and letrozole in December 2016.
A Different Outlook
Since starting this chapter with mBC, I’ve learned that bad news can be shared in a positive light. People may look at me strangely or cry. The funnel in my mind may try hard to swirl my thoughts in a misguided direction: Your pain is your own, no one understands, it’s your fault, don’t bother them and bring them down. But God has given me the grace not to exclude and isolate myself, but rather to include and embrace others. Being vulnerable and allowing them to help is a mutual benefit. For me, it helps slow the negative pull of my mind and lets me find some fresh perspectives.
I’d be lying if there weren’t times when my eyes want to fill with tears, and I want to shout, “No, not me!” I think that’s normal. But I’m choosing to focus on the actions I can take to maintain some control. I still go to work and my coworkers are insistent and consistent in their support. Sometimes that’s just letting me know my work is valued and helping me focus on things besides mBC.
My life has always been about relationships and the impact we can all have on each other. So I encourage you to rely on the people around you. Talk to your friends and family. Build a healthcare team who cares about who you are and not just what your cancer is doing. And above all else, keep moving forward.