LUNG FORCE Heroes
My name is Denise. When I was 53 years old, I was diagnosed with stage 4 lung cancer of the right lung. It was November 7, 2014. 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.
Several months later, I found out I had the ALK mutation, which made me a candidate for TKIs. Other imaging showed no metastasis to the brain, bone or other organs. I started with chemo and then maintenance chemo. I switched chemos after two treatments because of ringing in my ears. I had three or four thorcenteses until the fluid became loculated. I had radiation to the lower pleural lining in my right lung to try and smooth out the nodularity. This would make a future pleurodesis more successful, but due to the fluid being loculated (in pockets), a pleurodesis was not able to be done.
At the end of 2015, I developed radiation pneumonitis. At this time, I found out I had the ALK mutation. I started an ALK inhibitor 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 six weeks. A diuretic 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 ALK inhibitor. 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 in to 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. She gave up everything, which made me feel so guilty. I don't know what I would do without her! It's just the two of us. We cannot count on our family at all for help.
I started in hospice in July of 2016. The care was great. An aide came three 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 two weeks and my overall well-being improved.
By April, I felt well enough to fly to Washington, D.C. 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 D.C. 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 two 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 so I can begin 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.
American Lung Association is solely responsible for content.
Hero stories are the point of view of the Hero and not necessarily the American Lung Association. The Lung Association does not endorse any specific provider, facility or treatment.
Support for Share Your Voice provided by Cancer Treatment Centers of America®