 In the winter of 2006 my family and I received devastating news that would forever change our lives. My Aunt Linda was diagnosed with Stage 3 lung cancer and we were suddenly all on a journey to fight this fast moving and baffling disease. Between the time she was diagnosed with lung cancer and lost her battle, which was almost exactly a year, my family and I devoted ourselves to help Linda and support her in every which way we could. As caregivers, we immediately took on different roles and carried out different tasks to ensure that Linda was given the best options and care available to her. I went through an array of different emotions dealing with everything from anger and denial, to guilt and despair. As a group we realized quickly that communication was key in trying to coordinate roles as well as honor Linda's wishes. As her lung cancer progressed and Linda's conventional cancer treatments were not helping, we investigated and started to pursue alternative cancer treatments. We were surprised to learn about the lack of quality information that was available on alternative cancer treatments for Linda's care. After Linda passed, we continued to learn and find more information that would have been helpful during the time we spent caring for her.
Linda was an amazing person. She knew how to light up a room with her contagious smile. Some of my favorite memories I have of my Aunt were times we spent traveling to Cozumel, Mexico that holds a special place in my heart. Linda and I had a lot of fun there together. And then I was so angry the day I found out my Aunt had lung cancer. I wondered, "How could my young, healthy Aunt who never smoked have lung cancer?" I questioned the diagnosis and had a hard time taking the news seriously. I'm not sure the scope of the disease and the reality of what Linda was up against ever really sunk in.
During her conventional cancer treatments, I felt a lot of guilt. I was living in California at the time and it was hard for me to be away when I knew I wanted to be closer to her and help support my family. I felt guilty that I was not able to do enough, or I felt guilty for not talking to her more. When Linda's lung cancer became stage 4 and it was obvious her conventional cancer treatments were not working, I became desperate. I think we all felt absolutely desperate for new information. It was so frustrating being told there was nothing left for us to do. I remember always having this nagging pit in my stomach. The more time that passed, the more desperate we were. The last week of my Aunt's illness was the hardest week of my life. To watch someone you love endure so much suffering is extremely painful. Although I didn't want to loose my Aunt Linda, I did not want her to be in pain either. I was so determined not to let cancer get the best of her. It was so hard to feel like we were giving in. I still mourn Linda's loss daily.
As a caregiver, I was able to go with my Aunt several times to doctor's visits, radiation, chemo and help to seek out alternative cancer treatments. Linda never had to go to a doctor's appointment alone. My Mom, Grandmother, and Aunt would always accompany her to appointments with a notebook in hand recording every word the doctor would say and absorbing all the information there was to know. My family and I would spend hours on the Internet researching different cancer treatment options.
When my Aunt decided to research and then pursue cancer treatments in Europe, her friends and family helped raise the money she needed as these alternative treatments were not covered by her insurance. My Mother accompanied Linda and they stayed in Germany for over a month. After Linda's return home from Germany, our research led my Mom and I on another journey to seek out cancer treatment centers in Mexico. My Mom flew to California and then the next morning we drove across the border and visited two treatment facilities that had been successful in treating and curing cancer patients. Although Linda was willing to try anything at that point, both my Mom and I felt that Linda would not be happy there. She would not be close to her family and she needed the support of her friends. Also, we were able to acknowledge to each other that Linda's cancer was probably too advanced for the cancer treatment centers to be able to make a real difference. I think that we both felt the worst thing would be for my Aunt to be sick there and feel alone. Collectively we decided to keep looking for different options.
Above all, I'm happiest that my family was able to honor Linda's wishes on how the last days of her life played out. Linda never wanted to acknowledge that she would die. She was so determined to fight that even in her toughest days she was not willing to give up. I think she felt if we talked about her dying that would be her way of giving in mentally. Linda did not want to go there. So, we did not go there. All the girls, my Mom, sister, Grandma, Aunt Carla and I, were all together in Linda's home caring for her. When she was the most uncomfortable, we were guided by hospice who provided a nurse to come by a couple of times and show us the best ways to keep caring for Linda. She never had to leave her home, and she continued to have love and the support of her family and friends surrounding her. Linda had a very peaceful death. She was in her home, the place she loved, surrounded by all the people she loved. I was happy that we were able to provide that atmosphere for her.
Although Linda left us, she is still with us in spirit everyday. That's for sure. She has visited us all in some way. Just because she was not able to keep living in the physical sense, she is still very much alive. We carry on her memories and traditions all the time. She will never be forgotten.
Caregiving for a loved one with cancer is a journey I could never fully grasp. I think there are no words to describe the rush of emotions you feel as a close loved one struggles with the depths of cancer. I did not have time to analyze my feelings. I was in a state of shock and was desperate trying to understand all that was coming at me. You want to be able to help, and you do help all that you can. It's automatic. But the thing you really want to do is to save a life. And sometimes that is not possible. Looking back on caring for Linda, it seems like it went by way too fast. I wish there was more time to spend with my Aunt. Like time to go on one last vacation to Cozumel with her, or one last time sitting in her kitchen watching her make a gourmet meal. Or, just being able to hear her laugh. I wish she were here to meet my daughter, Lily Mae, and would love to see her holding her and laughing with her.
Thinking back, I see that being unable to access reliable resources was one of the most frustrating things for me during my caring for Linda. I felt stressed by poor quality cancer information online. I now understand the scope of high quality, comprehensive health information through cancer and that is why I am devoting a lot of my time to supporting EmbodiWorks. Explore our integrative cancer care resources addressing whole person cancer care. And if you are a caregiver of a loved one with cancer, please visit Self-Care Tips for Caregivers. There are many coping strategies as well as perspectives about feelings and reactions as a caregiver. These tips can help people effectively take on the role of caregiving and self-care at the same time. It is so important to find the support you need. EmbodiWorks provides resources to help answer questions and support for others who are seeking answers like I was. Linda's legacy resides in the core of our efforts along with the spirit of all other cancer patients woven through us.
Laura Gill is Board Vice President of EmbodiWorks. Through the loss of her Aunt Linda to lung cancer, Laura hopes to transform her family's tragedy into an opportunity to help others. |