#BeyondTheBreast: The Long and Sometimes Treacherous Road

March 23, 2018

Metastatic breast cancer, also called stage IV breast cancer, is breast cancer that spread beyond the breasts and nearby lymph nodes to other parts of the body. Metastatic breast cancer affects the bodies and emotions of those living with it in unique ways.

For LBBC’s spring #BeyondTheBreast campaign, on March 26, members of LBBC’s fall 2017 class of Hear My Voice Outreach volunteers wrote about their experiences with metastatic breast cancer and how the disease has affected them.

Here, Renae Byre, 51, of Burlington, North Dakota, writes about the stress of traveling hours away from where she lives to get treatment. Read her story and learn how you can get involved with #BeyondTheBreast.

Each week I commute 4 hours round trip for my chemotherapy and oncology visits. I make these trips to Bismarck from my home in Burlington, North Dakota, because even though it’s far away, I believe it’s where I need to go to get the best treatment. Sometimes I get to make that trip two or even three times. Each time I have to find someone to drive me. I am capable of driving myself but my family and friends do not want me to be on the roads by myself. So each week I have an extra burden of finding someone to drive me to these appointments. Living in North Dakota, the winter weather can be extremely dangerous. Temperatures can dip down below zero. As I write in the warmth of my house, we are under a weather advisory anticipating an ice storm followed by 18 inches of snow. 

On a Sunday a few weeks ago I asked my husband to make that 4-hour round trip journey to take me to the emergency room. I did not have enough lung capacity to walk from our bathroom to the bed. They admitted me to the hospital for pneumonia. My hemoglobin counts were to the point that I needed two units of blood. A CT scan indicated fluid around the heart and lungs. The right lung had enough fluid to warrant a thoracentesis to drain the fluid and tests being run. A thoracentesis is a procedure where they place a long needle into the lung and extract the fluid. Because they found fluid around my heart, they ordered an ultrasound of the heart. When an oncologist came to see me in the hospital that morning, he told me that draining the fluid around my heart would be too risky. He also indicated we would probably err on the side of assuming the cancer had progressed and would change the course of treatment I was receiving. That Wednesday night I was back in the comfort of my own bed.

Friday I was to go back to Bismarck for my weekly oncologist appointment. Because of my recent hospital stay, my oncologist decided to order a PET scan to determine whether the cancer had progressed, and continue with my normal course of treatment, vinorelbine (Navelbine) and trastuzumab (Herceptin), in the meantime. He put me on a low-dose fentanyl patch for pain. We had to do this treatment through my veins as my 14-year-old port was scheduled to be removed the next Monday. 

Sunday night, back on the road for a Monday morning port placement: My mom and I thought we were both too old and tired to leave at 3:30 on Monday morning. We booked a room at the Radisson and had a girls night in the hotel laughing and catching up on all kinds of things. Port placement was a success: back on the road toward home.

On Thursday, a pitch black morning, I am back on the road, this time to my 8:30 PET scan. I managed to convince my older brother to drive me this time. He was happy to help. The scan procedure was actually quicker than the drive down to the appointment.

The next day my husband and I go to my weekly oncologist appointment to find out the results of the PET scan. The drive seemed to be extremely long that day. Both our minds were running through every scenario possible. We get to the office only to learn my regular oncologist, Dr. Rau, had the day off. We found out from the oncologist that a new growth in the left side of my back has appeared, along with fluid around the heart and a thickening of the lung lining, which could be inflammation from past radiation, or growth of the cancer. He briefly ran down some possible new courses of treatment: radiation, new medicine, etc. But on this day we would continue with the normal course of treatment. He did give me something for the increased nausea I had been experiencing the last month. He also thought the nausea could be related to my increase in anxiety so he gave me something to assist with that. The nurse confirmed that my hair loss is a delayed side effect from medication.

On the ride home, my husband and I both talked about how confused we felt from that appointment. We left with more questions than answers. I expressed how much I hate radiation. My last course of treatment to the lung last spring resulted in pneumonitis of the lung. This left me with 7 months of a violent cough. Our warped sense of humor gave us the opportunity for several laughs, from my adult diapers to our lack of understanding about some of the procedures the oncologist was describing. The journey on the road can be treacherous at times but is always more enjoyable when we can interject humor. Humor combined with gratitude, faith, trust, and positivity is how I choose to cope and ride in this cancer journey.

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