Nurse, mom, devoted caregiver, wife
ABOUT LIBBY, IN HER OWN WORDS:
- I loved my job, and it was hard to think about leaving.
- My husband, Merv, and I met on my 17th birthday, and I have loved him since. He has been my best friend, my anchor in life, and the man I planned to grow old with.
- I trust I’ll have the strength to deal with what comes my way.
My First Diagnosis
A wise man once told me, “It’s up to you how you use your time on this Earth. You can spend it living or you can spend it dying.” He was my first oncologist, and that advice came right after he told me I had breast cancer. It wasn’t Stage IV, then, though it is now.
Nonetheless, when I first heard I had breast cancer back in 1999, my immediate reaction was to curl into a ball, cry myself to sleep, and just let the world pass me by. But when my oncologist challenged me like that, I took it to heart. Breast cancer actually became a freeing experience for me. I realized that nothing is guaranteed in life. I started to wonder, Why not take those chances? What have I got to lose? So, after I completed my treatment, I decided to go back to school and become a nurse manager.
My husband, Merv, and I met on my 17th birthday and I have loved him since. He has been my best friend, my anchor in life, and the man I planned to grow old with. Through trials and joy, we raised our four sons and made our way down the road together.
With my first breast cancer diagnosis, Merv was there to give me strength and hold my hand. After I got the news, he took me to see the Star Wars movie that was playing at the time. I sat in the theater and pictured myself as a Jedi Knight, killing errant cancer cells with a lightsaber.
Through chemo, he held my hair when I was vomiting. He drove me to the grocery store in the middle of the night so I could sniff soap and find one that didn’t make me nauseated. Merv cheered when I decided to return to school. He was by my side all the way through undergrad and graduate school.
Over seven years ago, Merv was diagnosed with dementia. I became his caregiver. With the support of adult daycare and, finally, a personal caregiver, I was able to continue working in a psychiatric hospital. Even when tragedy strikes, the bills continue.
For over three years now, Merv has been unable to walk, talk, sit up independently, feed himself other than finger foods, or perform any of those activities of daily living that we all take for granted. It’s hard, physical work to care for him and it is heartbreaking.
Finding Out I Have MBC
Caregivers are infamous for ignoring their own health. One December, I had a cough that didn’t sound like any cough I had ever had before. The following March, I came down with what I thought was a horrible upper respiratory infection. I had improved enough by the time I had a checkup with my doctor that I didn’t even mention it. In the summer, however, the respiratory problems came back.
That July, I went to my doctor’s office where I was examined and X-rayed before being sent home with antibiotics and instructions to come back. When I did return, my shortness of breath was so bad that I was admitted to the hospital. They did lab tests, EKGs, X-rays, CT scans, and an echocardiogram. Results showed fluid buildup on both of my lungs. It was drained and sent for testing.
Days went by. Then I got the call from my doctor. Malignant cells had been found in the fluid they’d drained, which meant my breast cancer had metastasized. I just sat in stunned silence. The strangest thought flitted through my mind, Would I still be able to complete the crisis intervention program I had started at work that day? I was completely disconnected from the fact that I had a crisis of my own.
When I got home, Merv’s caregiver put her arms around me and we both cried. I called my sister-in-law, who was there in five minutes. She listened, hugged me, and reminded me that I did not have the whole story. I felt like the world had come to a screeching stop, so I sat in the garden just to breathe. Then I called each of my sons, told them the news, and asked my oldest to come home.
My greatest fear was that I would not be able to care for myself or for Merv. As someone who’s cared for other people throughout my career and my life, depending on anyone else was frightening. I am the one in control! I am the one who makes decisions. I didn’t want Merv to go to a nursing home where he’d be looked after by a staff who didn’t know what kind of husband and father he had been. I asked our youngest to serve as durable power of attorney, then did some research and suggested my choice of nursing homes. I even started to talk about how I would like my ashes buried under a tree on a hillside in the country. Crying was getting to be too common and I was having enough problems breathing.
After that, there were more scans, X-rays, and tests. The fluid around my lungs would come back days after it was drained. At some point, I had chest tubes put in. Shortly afterwards, I went to meet my new oncologist.
He was young and I was afraid he’d tell me once again about my prognosis. I knew what it was and I wasn’t in the mood for statistics. My son Matt was with me and that made things a little easier. But my oncologist didn’t talk about my outlook. Instead, he focused on what we could do to treat the cancer.
Based on the tests they’d done, he was able to determine that my cancer was HR+/HER2-. He recommended that I take letrozole, which is an aromatase inhibitor, as my initial treatment for MBC. Because I was postmenopausal, he also mentioned the possibility of taking letrozole in combination with another oral medication—IBRANCE. We discussed the potential for serious and common side effects, including the possibility for a low white blood cell count, infections, and nausea. I decided to move ahead with IBRANCE, plus letrozole, as my treatment plan. I allowed myself to feel some sense of positivity. We weren’t just accepting the cancer; we were doing something to fight it.
As we moved forward, the cancer center team worked closely with my insurance company. Pfizer’s RxPathways™ program helped connect me with other services to help cover the cost of my prescription. Within a couple weeks, I was approved to start IBRANCE and my specialty pharmacy assured me my medication was on its way.
I am not sure what I expected with the first dose, but I didn’t feel any different. My white blood cell counts, red blood cell counts, and platelets dropped, but my doctor said that since I was already careful not to bring stray illnesses home to Merv, that same prudent approach would help me. I’ve also experienced other side effects, including my hair thinning as well as fatigue that can happen suddenly and be overwhelming. In those instances, I try to give myself a break. Other patients may have different experiences—not everyone responds to treatments the same way.
I have been fortunate to have an understanding team of support. My doctors have been great. At work, I had an understanding boss and multiple shoulders to cry on. My sons have been there for me and Merv. With all that going for me, I trust I’ll have the strength to deal with what comes my way.
I’m realistic, though, and there are times when I still get a little down. I may need to hang up the lightsaber, or pass it onto someone else. I loved my job and it was hard to think about leaving, but I also realized that the staff will care for the patients and love them as I did. I need to remind myself that my sons are grown. They will continue to make good decisions.
I’m still adjusting to my new reality with metastatic breast cancer. The only thing I know for certain is that I want to spend the time I have living and not waiting for the next event. Tomorrow is not guaranteed, so I choose to focus on making the most of today. It’s up to us how we spend our time on this Earth.