Brenda Kauffman

Brenda Kauffman—My cancer journey:

I was diagnosed with cancer in the midst of a family crisis that started several years prior to my noticing that I had a lump in my left breast. In retrospect, I can see now that I had spent years living in crisis mode. And, if I’m honest, my focus was on everything other than self-care. My two, now adult, children are adopted. They had each lost birth mothers when they were very young. We became a family when they were each about 5 years old. We returned to the country in which they were born in early 2016. We knew of some living family members and hoped for a meaningful reconnection with their country of origin. There were many wonderful things about the trip. But I will forever be haunted by the agony of seeing them feel split apart when we boarded the plane to return “home”.  I guess we’ve mostly just been trying to put all the pieces back together since then.

Over the years, my children’s grief has presented itself as anger, withdrawal, rejection, sadness, guilt, depression, lies, lashing out, broken trust, manipulation and slamming doors. Lots of stuff that most folks might just attribute to being teenagers, but I always knew, deep in my heart, that there was a well of grief, just waiting to spill out. There were days when I really didn’t know whether we could heal from what felt like a shattered relationship. My own guilt for feeling like an ill-equipped parent didn’t help. I was trying so hard to fill the hole, but couldn’t.

In the fall of 2018, my then 17-year old daughter started struggling with anxiety, depression and self-harm. We made three trips to the hospital with her that fall. They kept her for nearly a week on the third visit. I was at my wit’s end. I had no idea how to navigate this territory. It was clear that she needed more support than what we were equipped to give. For weeks and weeks we waited, holding our breath, for a bed to open up at an in-patient support program.

Finally a bed opened. Early that cold February morning, we labeled her clothes, packed her bags, chose some comfort items to take along and loaded the car. As I was reaching down to tie my shoes, I noticed that my vest felt uncomfortable and that my breast seemed strangely hard. The questions flooded my mind…How long had it been that way? How did I not notice this change? What was this? Could it be cancer? No, this can’t be cancer, I’m only 48!

We had a flat tire on the way to her intake appointment… we have way too much on our plates for this to be cancer. I felt numb. I was flooded with worry about my daughter. I was worried about what was happening inside my body. It was hard to focus. It was hard to breathe. We said goodbye and drove home in silence. I knew if I tried to speak, the tears wouldn’t stop.

The next day I made an appointment to see our family doctor and the wheels were set in rapid motion. I was optimistic. I was confident that this was not cancer! Then I had my ultrasound and I knew by the looks on all the medical professionals taking care of me that it was. All I could think was, “Are you kidding me? We’re trying to keep our daughter alive, I do NOT have time for cancer!” I wonder now if the young male doctor who read my ultrasound had ever had to break that devastating news to anyone before, let alone a worried mom.

When I returned home, my family greeted me with hopeful, optimistic arms, certain that this was all a false alarm. I had to break the news. It felt like my world had been turned upside down. I had to have a brutal conversation with my daughter about not being able to attend all of the family therapy sessions and that I wouldn’t be as available to her as I wanted to be. She listened nervously but was too overwhelmed to respond. How would she handle this news? My son just wept. He didn’t have to say it, but I know his heart was crying out, “I cannot lose one more mom!”  Soon he and I were both in tears and he said, “If anyone can beat this, it’s you.”

After that I didn’t really let myself get caught up in the fear. It was as though I had another job added to my plate and it was suddenly all about the doing…. My husband and I have spent years managing a small business. We are list makers and tend to go into turbo mode when there is a deadline. This felt like a giant, looming deadline. My calendar was suddenly peppered with appointments, but we hadn’t yet told a lot of people. Telling people made it real. Telling people was terrifying.

Telling family was the hardest. How do you tell your parents that you have cancer? My mom didn’t want to believe the news. My dad’s eyes just welled with tears and he could not find his voice. My sister wept and encouraged and listened and prayed. My in-laws wept and encouraged and listened and prayed. My dear friends wept and encouraged and listened and prayed. Finally, I shared the news with my church. My voice was shaking and all I could think about were my kids, sitting there, worrying that they were going to lose yet another mom. But that Sunday, I felt loved like I never had before. When that service ended, it was as though the women of the church were swarming around me like a hive of caring, dedicated worker bees. They wrapped their loving, empathetic arms around me and not only conveyed their love and concern and HOPE—those women made things happen! In a matter of days they had a plan for bringing us meals once I started chemo. They sent notes and blankets and books! They offered to take my kids on hikes….and to simply listen.

That week we met with the Cancer Center to go over my treatment plan. I had been given so much advice that it was hard to know what to do, but I trusted my doctor and I appreciated the way the local team had worked hard to get my results quickly. They were ready to move ahead and so was I. I just wanted this thing out of me!

Then my world came crashing down, again. Just before I was supposed to begin chemotherapy, we learned the astonishing news that our insurance did not cover cancer treatments. What?! Isn’t that why you have insurance? We were in shock. We are essentially self-employed so do not have the benefit of employee-provided insurance or the luxury of being part of a group plan. I knew that we had a high deductible, in spite of high monthly premiums, but I never imagined this! If I felt like I couldn’t breathe when I received my diagnosis, this was another level of gut-punch!

It was a toss-up between the disease, or my pending financial collapse, as to which was causing more stress. My kids were nearing college age and we were suddenly slammed with medical bills that I knew we could never pay. But my worker bees quietly confided with one another and were suddenly set into motion! In a matter of hours there was a Go Fund Me set up. I was reluctant for them to do this because I already felt embarrassed about having breast cancer, even more so that I couldn’t pay for treatments. But I pushed my pride aside. People from different chapters of my life contributed. It was amazing. Although there was a stress-inducing delay to get started with treatment, between the fund and our savings account, I was able to get started.

We live in rural Western Oregon. My nurse navigator suggested that I apply for Treatment Access Program (TAP) to help cover the travel expenses for my long drive. I had no idea that such a program existed, but it was certainly a gift to have some of my gas costs covered.

I suppose that I could look back and think of the last year as a nightmare, but I don’t. I see it as a time that I learned, really learned, how deeply I appreciate my community and how deeply I am loved. I was always taught to be humble so even writing that feels awkward, but I’m blessed to have been given this gift of time and love and awareness. Yes, it was scary and there were lots of tears and even some anger, but mostly I just felt loved and cared for, through programs such as TAP, I felt that love, even from strangers.

I also have to give a shout-out to the Cancer Center in McMinnville. What a lovely group of people! My nurses were fabulous and I even grew to enjoy my daily conversations with the radiation team! We discussed books and parenting and art! They were so positive and affirming, everyone! I was simply blown away by the support from Seeds of Hope and the With Courage support group. Caitlin from With Courage came and sat with me during my first chemo and she has been a constant resource for answering questions and finding creative and meaningful ways to support other cancer fighters and survivors!

I am deeply grateful for the outpouring of support that I have received during my journey. I  hope to spread that love and joy back into the world going forward.

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