Written by Kim Asbury, Brains for the Cure Ambassador and Caregiver
My sister, Lori Jo, and I have always had a very close relationship even before she was diagnosed with brain cancer. Considering she was almost nine years younger than me, radiant and healthy, I never in a million years thought I would have conversation as painful as discussing hospice care near the end of her 40-year-old life! But then again, I also never thought she would have a terminal illness!
In 2016, when I found out Lori Jo had brain cancer, I had an unwritten agreement with her that if she every wanted to stop all the treatments, she would tell me, enough is enough. I would advocate for her and the many treatments would end. Lori Jo was an extremely strong-willed person so that did not happen for a long time. Over her three-year battle, she handled 40 rounds of radiation, 2 brain surgeries, and 1.5 years of chemotherapy like a champ! So, in my mind, she was never stopping. She was going to be that anomaly that survived brain cancer. I mean someone has to beat the odds and why not Lori Jo!
The first year of her disease, it was like Lori Jo did not even have cancer. She looked amazing, dressed like a diva, posted on Facebook, attended concerts, and decorated her new apartment. All things Lori Jo would normally do.
By the second year of her battle, her war wounds were starting to show. She slept more, started to lose her peripheral vision, had trouble finding her words, and began forgetting every day facts. The following year, I also found out she needed another surgery because new tumors had returned.
In February 2018, during her second brain surgery, I asked her surgeon, Dr. Elder, how soon to expect the new regrowth of her tumors. His answer was dumbfounding. Dr. Elder mentioned each time her tumors would grow back faster and faster with the time splitting in half. For example, the first two tumors were estimated to have grown in 2 years, the next time the tumors returned it was in 1 year, and then 6 months later they would grow back, and so on. He said eventually the tumors would grow back so fast he would not be able to operate on them and she would succumb to her disease. At the time, even though he was a brain surgeon, I did not believe him. I thought there is no way she is going to die from this disease! Either way, I kept in mind what Dr. Elder told me.
Lori Jo’s cancer symptoms continued to get more and more noticeable as time went on. Sometimes, she would not be able to complete her sentences or she would ask me the same question over and over. Other times, she asked me why I was even at her house even though I came every weekend. Her critical thinking was going and it was going fast along with her desire to leave the house. She no longer wanted to go to her happy place, Target. Instead, Lori Jo for the first time ever asked me to go alone so she could stay home and rest.
In March 2019, when Lori Jo began falling down and having horrible headaches, I realized the two tumors had grown back. This time, they came back with a vengeance. Her oncologist looked at the possibility of having surgery in April, but by then the tumors were the size of a small orange. It was shocking to see how fast the tumors had grown.
There was now the realization that her brain cancer was inoperable just like Dr. Elder had predicted. My heart sank thinking of the word “inoperable” and what that really meant for Lori Jo.
After her appointment with her oncologist and receiving the grim news, I asked my sister how she felt. Surprisingly, she said she felt great and was happy to no longer have any more doctors’ appointments. I cringed at the thought of what no more treatment meant. Then, I remembered the promise I made to her at the beginning of her journey. This time, the doctors were choosing for her, but she seemed ok with the decision because she had a deep faith in God and she knew he was calling her home.
As you can imagine, there are many conversations has when a loved one is dying. One thing we had to keep in mind was, what did Lori Jo want? She wanted to go home to God. She was tired! Her body was tired! She had fought fearlessly for more than 3 years. My sister also began talking about Heaven and all the people she would see there. Happily, Lori Jo would tell us she wasn’t scared to die. Her only regret was not seeing her only child, Livia Jean grow up.
Once my family and I gave into the fact that God was in control and that Lori Jo was ready to be pain-free, a truly traumatic event became less traumatic. We realized it was her decision, not ours. In order to honor her wishes and God’s wishes, we had to let go of our beautiful sister. While we were very much heart-broken by her ultimate passing, we were also at peace knowing once and for all Lori Jo would be without pain or suffering!