Advanced Lung Cancer Patient: ‘I’m Not About to Go Quietly into the Night’
November 30, 2017 | by Julia F.
Four and a half years ago, a lingering cough sent her to her doctor for first an X-ray, then a CT scan.
On a Monday morning at 9 a.m., I was sitting at my desk when the phone rang. Dr. [Pawel] Olszewski said, “I want you to go home and get your things and go to the hospital.”
I walked out and told my boss calmly, “I have to go to the hospital, I have lung cancer.”
I have to own this one, as I was the idiot who smoked for 30-some years. I was never a chain-smoker, just a half-pack a day.
I was put in the hospital for a week while they ran tests. It was a large mass wrapped around my bronchi, with a small piece around my aorta. Both the radiologist and the cancer doctor told me they were going to be really aggressive in fighting this.
So, game on.
I had five weeks of radiation, and at the same time I did six rounds of two chemotherapy drugs. I had to have IV fluids after every round of the drugs. I was so weak, my sister pushed me around my apartment in a wheelchair. I lost 60 pounds in two months, had thrush in my mouth and pretty much only ate yogurt for a month. I ended up being hospitalized and put on a liquid nourishing diet.
Their aggressiveness worked, as the tumor went away in two months, but I did the protocol for the entire summer. The cancer went away, and it stayed away for nine months.
That day in February – when the doctor told me a spot had come back – wasn’t a good day. I didn’t realize then that that meant palliative, end-of-life care. I just kept trudging forward, expecting to beat this. They tried all summer, with more rounds of two drugs, to make that spot go away.
We thought the spot had gone away that August, but in November, when I had another PET scan, there were now three small spots.
I then started a new drug that was really hard on my red blood cells. I lay in bed for two weeks after each round, and had to have blood transfusions after each treatment. That’s when I decided I wasn’t going to live or die this way — I needed to do more.
I got on the phone and called the National Cancer Institute. I asked about hospitals in the states surrounding Wisconsin. I also asked what to look for in finding a doctor. That’s how I found Dr. Ravi Salgia. He had trained at Johns Hopkins Hospital and Dana-Farber Cancer Institute and was on the faculty initially at the DFCI, and he had a strong team of doctors. I thought, this is the guy. He will help me. I called and set up an appointment. [Salgia, M.D., Ph.D., is currently the Arthur & Rosalie Kaplan Endowed Chair in Medical Oncology and the associate director for clinical sciences in City of Hope's comprehensive cancer center. When he treated Julie, he was a tenured professor and served as the director of the Thoracic Oncology Program at the University of Chicago.]
Meanwhile, I gathered together almost 500 pages of medical records from the last two years. I then sat down and wrote a letter telling him who I was and that I wasn’t planning on dying anytime soon — could he help me?
The travel time was long, but we got used to it as my sister and I traveled every week from the end of January to early June to Chicago. The day we met Dr. Salgia, he looked at me and smiled and said, “I don’t think I have ever had someone send me so much information. I feel like I know you already. Let’s get to work. There are a lot of things I can do for you, but I would like you to try this clinical trial first.”
The first clinical trial lasted about three months. When they saw that it wasn’t working, they stopped. I then started a new immunotherapy trial. It was a two-drug protocol every 21 days. It was during that first round that I was told that this was considered palliative, end-of-life care. Up until then, I thought I had a chance of fighting this.
Midway after the first round of immunotherapy, it got really dire for me. I was struggling to breathe. They told me I had a piece of the tumor inside my bronchi. The following week, we went back to Chicago to do the second round. Dr. [Karl] Matlin met with us and told me he had had a discussion with nine doctors that morning about me. He decided it would be best for me to go back to Wisconsin — less travel, less stress — and do an old drug to chip away at the tumor. If we could make it get smaller, we could revisit the immunotherapy. He suggested I talk to hospice.
It was a sobering day. I called my nurse Tami back in Wisconsin. I told her what we were told in Chicago and that “I’m not about to go quietly into the night, I’m just not.”
Back in Beloit, I was put on a drug that was administered every week. Two weeks into this, I ran into my radiologist and we talked. I asked if he could do some fine-point radiation just at the tumor to get it to break away from my bronchi tube, to ease my breathing.
He said sure, so I had a CT scan in mid-June. Three days later he called me. He said, “Kiddo, we are going to wait on the radiation.” I said, “Why?” He said, “Because I’m looking at your scans, and the tumor is shrinking.”
The rest is history. The tumor and my cancer were completely gone by August; however, I completed the 12-week protocol just to make sure. My doctor was all smiles when he read those scans. He couldn’t believe it. He called Dr. Salgia and gave him the news. Dr. Salgia called me and asked that I return for blood testing. I did that twice.
He stood there in his office elated to see the CT scans. He said, “I don’t get to see miracles very often, but I’m looking at one right now.” He gave me a big hug.
They don’t know why my cancer went away. I only did one protocol of the immunotherapy. They say it’s amazing.
Besides all the help from my sister, friends and neighbors, I have a 4-year-old female Lab named Winter who was just 9 months old when I was diagnosed. She is a wonderful, smart Lab — but she is an alpha and too smart for her own good. Kind of the standing joke back then was that I have to make it, because nobody else would take the dog. That strong, willful, determined dog really helped me through it.
I used to look at life in a different way than I do now. That doesn’t mean I need to travel the world or do exciting things, because I like to live simply and just enjoy. I have more friends than most people and a strong support group. I am thankful for that. I know I am blessed. And whatever God would like me to do to support others or help, all he needs to do is point me in that direction.
I firmly believe that between the miracle that God gave me, the immunotherapy and the fact that I do all that I can to make my insides better to fight cancer, I am a survivor.
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