Already having battled breast cancer twice, Eileen was diagnosed in her 60s with mesothelioma. Turning towards her faith, she has been able to take comfort in the stories of the saints and her grandchildren as she prepares for the uncertainty of death.
I had a lumpectomy for breast cancer when I was 57. Then, 9 years later it returned, and I had a double-mastectomy. I had expanders put in for reconstruction, and one night I developed a fever of 103°. I went to the hospital and learned I had a collapsed lung. They didn’t know why but thought maybe it was pneumonia; they drained it, put me on antibiotics, and tested a sample of the fluid, but it was inconclusive. The doctors hadn’t seen anything like this. In the middle of my implant surgery, they had to drain my lung again. That’s when I was diagnosed with mesothelioma, which is rare and incurable. It takes about 30–40 years to show up and is caused by exposure to asbestos. I was a chemist in the 1970s, so I figured that’s how I was exposed.
The diagnosis was devastating. I became numb. When I looked it up and found the stats, they were very bad, and the only treatment was clinical trials. That’s when it hit me, the numbness of I have no future. I’m still here 2 1/2 years later, but I didn’t know how to position myself, how to think about it. I remember finding one woman who lived 14 years; she became an advocate and talked about how she was going to die from it, and it wasn’t pretty. There’s no way to find out how it really is going to be; but I wish I knew what to expect.
Gortex and Love
In the first clinical trial they infused a modified smallpox vaccine into my chest cavity, which stopped the cancer from progressing. They had found it at stage 1, so they considered me a good risk. But by last summer, the cancer was spreading, and I went through a rather draconian surgery: they removed the pleural lining and diaphragm, replaced it with Gortex, then put me through chemo for three months and intense radiation for six weeks.
My husband is tremendously supportive. He’s been kind and gentle in ways I didn’t anticipate, like dealing with my chest drains; that is love—not the flowery type—he was there when I needed him. He makes all the meals, drives me to the appointments, and stays all day during treatment. I hated driving into the city and was afraid I would die on the road before the cancer got me.
The Burden of Death
I’m very religious, and that is really what has saved me. God put me here for a reason and has my good in mind. If I die from cancer younger than thought I would, there is a reason for it. I’ve also always had a real devotion to St. Therese of Lisieux. She was a nun who died of TB at age 24, almost 50 years to the minute of my birth. And my death will be similar to that of a TB death.
She kept a diary in which she talked about her relationship with God and about her illness. I definitely feel fearful and isolated, but she is there for me; I can go to her book and find solace, which helps me get past the fear. Religion came to support me; it doesn’t make me less afraid, but I go to Mass every day and that gives me strength and gives me a sense of peace.
I talked to a priest about death, getting ready to die, dealing with my family. It’s all about “now and the hour of my death.” I confessed that I felt real despair and wanted to end it. He prayed and said it wasn’t uncommon; he reminded me of the dark night of the saints, which was so freeing. I was able to get the sacrament and feel cleansed and free. I didn’t feel emotional or religious, just an act of the will. I could align my suffering with that of Christ. Recently, when I received a bad doctor’s report, I went to talk to a hospice person; I want to know what’s going to happen. I don’t want to be a burden to other people, but I feel like an albatross.
Maybe Another Year
I kept working through treatment. It became a game to not let people know how sick I was. I had gone back to school to instruct others how to teach science, which I now do mostly through online classes, so it wasn’t like I had to show up in an office every day. Being able to work gave me something to think about besides being sick and helped bring in money to cover expenses. For a while, I enjoyed getting a boost from others, “look how hard she works even through cancer.” I’m still working. It’s a great distraction, and it brings in money to help pay for all this treatment.
I get anxious about the checkups; the treatment done over eight months was a lot and I was expecting to get a few years without issue, but I learned I had anemia and needed blood transfusions, which made me realize I’m sicker than I thought. There isn’t much info about this disease or the experience. About 80% of people die in the first year and the five-year chance of survival is 5%. I’m already three years out, so I figure I’ve still got a year or two.
Facing Death with Faith
My biggest fear of dying is suffocating, which is how one dies of this disease. I don’t know how to face that, except I pray, talk to doctors and tell them I want a lot of morphine. It scares me to think about even going to heaven, but we all face that transition. What will it be like to die? That transition worries me.
I would like to understand what’s going to happen. There are palliative doctors I want to talk to about what the end will be like. Part of me just wants to get this over with and let my family move on, part of me thinks it would be nice to get to closure, but then I get sad when I think about leaving my husband and grandkids. It will be hard for him, but God will be directing him. I can’t micromanage what he will do ten years from now.
It’s surprising, I thought I would live into my 90s. Mesothelioma made me feel vulnerable about being mortal. None of us envision a time when we won’t be here; we busy ourselves with so many things and believe we are immortal. The shock that death is true when you realize you have a short window to start planning things differently. You need to have faith in something that goes beyond the material. Once, my surgeon noticed I was reading a religious book and she told me, those that have handled it best are the ones with strong faith. You can’t really offer people any medical hope with mesothelioma, but faith helps.