I was diagnosed with stage IV lung cancer of the right lung November 7, 2014, at the age of 53.
I had a malignant pleural effusion (MPE) that was found after months of symptoms and doctors’ appointments. The fluid contained malignant cells --- non-small cell adenocarcinoma.
I had chemotherapy, radiation and maintenance therapy, By the end of 2015, I had developed radiation pneumonitis. At this time, I found out I had the ALK mutation. I started a targeted therapy in January 2016. I had terrible vertigo, my blood pressure and pulse continued to drop. As a result, I passed out a few times and had some falls. By March, I was in acute heart failure. I spent about a week in the hospital, then rehab for 6 weeks. Lasix pulled off 50 pounds of fluid from my body. I also have hypertrophic cardiomyopathy, so that works against the lung cancer and treatments. After rehab, I tried another targeted therapy. I was still pretty weak and unsteady. I got a stubborn pneumonia that took two different antibiotics and a few weeks in the hospital to kick.
I felt the end was near, so I made the decision to go into hospice care. The treatments were literally killing me! In rehab, I developed a right frozen shoulder. I had no quality of life. I just wanted to go home and spend time with my daughter. My daughter, who is now 25, withdrew from college and quit her full-time job to move back home with me. I don't know what I would do without her!! It's just the two of us. She gave up everything, which made me feel so guilty.
I started in hospice in July of 2016. The care was great. An aide came 3 times a week to help me with my showers. A nurse came 1-2 days a week to check my vitals and medications. They even had physical therapy come out to work on my shoulder. By January 2017, I was getting stronger, but my shoulder was not improving much. I decided to go have acupuncture on the shoulder. I figured, why not? I didn't feel at death's door any more. I cannot explain it, but acupuncture just woke up my body. I went about every 2 weeks and my overall well-being improved. By April, I felt well enough to fly to Washington, DC, with my daughter to attend the 2017 LUNGevity National HOPE Summit. It was a game-changer of a weekend! I asked to be released from hospice when we returned from DC. I was re-imaged and after not having any treatments for over a year, there were no metastases in the brain, bones, or other organs! I am driving again and have my independence back! I continue to get acupuncture every 2 weeks. I have been eating a plant-based diet and have added some supplements to my routine. I have joined a gym to help build more strength and endurance. My last chest CT from late August showed small progression in the right upper lung. I am now waiting on financial assistance approval from Genentech so I can begin a drug called Alectinib.
All I can say is: IT AIN'T OVER TIL IT'S OVER! Never give up. I wake up each morning to another great day. I am not taking this second chance for granted. I am advocating for lung cancer awareness and research by taking part in #LCROCKS with LUNGevity. I have contacted a local Austin news anchor to do an interview for Lung Cancer Awareness Month in November. I also plan to contact my cancer team and push for recognition of lung cancer survivors this November. If I can reach one person and educate them about lung cancer, then this rocky road will have meaning for me and my daughter.
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