I just came home from the hospital today. On Tuesday, two days after my son’s wedding – by plan – I had the lower lobe of my right lung removed for primary lung cancer. It is a, non-aggressive form of cancer that rarely recurs.The PET scan and the pathology was clear of lymphatic involvement (it has not spread). Other than the primary tumor, they saw no visible cancer in the lung cavity.
My surgeon told me on Tuesday that I probably would go home this Monday and that he rarely had patients be released as early as Friday. But I recovered quickly. I only spent a day and a half in ICU before being sent to a step-down ward. This morning, they took a final chest X-ray, gave me the wonderful pathology results, pulled out my chest tube and sent me home. I have no evidence of disease. I do not need chemo or radiation. I go back every six months for a scan.
My doctor agreed I could wait until after Chris’s wedding to have the surgery. Otherwise, by the time I had the various pre-ops done, he could not guarantee that I would be recuperated enough to attend.
In between the August diagnosis and today when I found out the pathology report, were the worst 5 weeks of my life. Worse than when my Dad died in three months’ time from pancreatic cancer. Worse than when my mom died in her sleep without any warning. Worse than when my husband called me in Memphis from Portland in the middle of the night because he was in agonizing pain in an ER and needed me. Worse than when Jessica called me from Cape Cod on a New Year’s Eve to say that she was hemorrhaging when she was pregnant with our grandson and they were driving to NY at breakneck speed to get to her doctor.
My family and friends rallied around me with prayer, spiritual nourishment, visits, cards, and tears. My husband, my children, my sisters and their families were like warriors of love.
I didn’t write a word of this before today. Only the immediate family and close friends knew about it. They all promised that not a word of it would be spoken about at the wedding. Originally, I discussed blogging about it but my family and friends counseled me to hold off. The last thing they wanted was for people to give me unsolicited medical advice or question my doctor’s protocols. I went underground more or less. I did attend two art retreats where only a tiny group knew what was going on and the support of my friends and the weekends full of art were like being blessed with artful prayer.
We went ahead with the wedding, planning outfits and gifts, helping to set up, attend the rehearsal dinner, and dance the night away. I was able to truly, magically, and overwhelming fall in love with every single person at the wedding and have the most intense spiritual experience of love of my entire life for the whole weekend.
I will be writing more and more about this. But I am writing tonight, this night to you and you and you for this reason only:
GET A CHEST SCREENING FOR LUNG CANCER WITHIN THE NEXT WEEK.
I FOUND OUT THAT I HAD LUNG CANCER BY ACCIDENT. IT SHOWED UP INADVERTENTLY ON A CT SCAN THAT WAS FOR KIDNEY STONES. MY SYMPTOMS HAD NOTHING TO DO WITH THE CLASSIC SYMPTOMS OF COUGHING, SPITTING UP BLOOD, PAIN IN CHEST OR BACK.
I haven’t smoked in over thirty years. I socially smoked with my friends in high school, in classrooms and the dorms in college, with friends in law school, and at my first job. I was asked how many packs a day I smoked then. Are you kidding me – who remembers? I just know my mother never saw me smoke; I never smoked at home, in my car, in Stan’s car, or in our apartment after we married. I quit cold turkey the year before we decided to have a baby. I was never exposed to asbestos, radon, or any chemical that I know of. Yet…
We had spent most of August on the Cape. We were living the dream. We stared at each other in disbelief that we were just…there, day after day. Kids came and went. Sunny days rolled past. I painted away the afternoons. Stan puttered. Cousins visited.
But all along, I knew something was wrong.
For the last 18 months, I’d felt unwell. I had serial migraines and tension headaches. Recurrent UTIS. Fatigue, malaise, depression, night sweat sweats, weakness, and pounding heart. I saw urologists, my PCP, ENT, had all sorts of urologic tests, CT scans, and trolled the internet looking for a connection, explanation, diagnoses. I went to my doctor at least twice and said simply, “Something is wrong. I have an infection somewhere.” He would examine me, do every kind of blood test, and come back with no positive findings.
Oh, you just need to retire. You’ll be great once you see that grandson more often. You need sleep. You need exercise. You’re a nervous wreck. It’s allergies, mold, sinuses, anemia. Again, and again, all the tests, labs, and scans came back negative.
But I didn’t get better when I retired. I went to urgent care twice in Cape Cod. I took my grandson out for the day and had to sit in a chair at the Children’s Museum while he played because I was too sick to walk back to the car. I spent three days in a bed with a migraine. I lived on Allegra. My husband asked each morning – nicely (mostly) – well, what’s wrong today? I called my PCP and begged for antibiotics long distance. We came home, began setting up the apartment, and I was babysitting a few times a week. One morning I fell asleep with my grandson playing at my feet and the TV blaring. Just fell asleep on the sofa like I was drugged and woke up a few minutes later with a start.
I was waiting to see a urological specialist when I experience what I thought was yet another UTI. As I was unpacking in the apartment, I was sweating and felt so shaky that I couldn’t stand up. I managed to get an appointment with the Physician’s Assistant for my doctor. I almost cancelled it because I felt too sick to drive there, but felt badly cancelling an hour after they worked to fit me in.
The PA spent a long time talking to me. He thoughtfully went over the last year’s medicals and exams, searching for a clue. He examined me one more time and hit a spot over my left kidney that was tender. He sent me to the imaging center downstairs to have a CT scan for kidney stones because I had had one in June. He explained that I could have very small stones causing chronic irritation and infection.
I was praying it would be positive so I would know what was wrong. I practically skipped downstairs and had it right then. When it was over I was getting in the car when the phone rang. It was the PA. He was asking me to come back upstairs. He was fumbling over his words.
He said, “You don’t have any stones, but your scan caught the bottom of your lung showed a, uh, an …abnormality.”
I had a mass in my lung.
I waited an hour to see my primary care doctor, a man I have trusted for almost twenty years. He showed me the scan. He told me that the radiologist thought it was primary lung cancer. He hugged me. Told me nothing was certain until a biopsy. He offered to call Stan to come right from work to talk to both of us. He made an appointment right then though it was after hours for me to see the best person he knew in thoracic surgery, and we scheduled a PET scan for two days later.
I called one of my sisters in a panic as I drove home. I couldn’t breathe. Stan was waiting for me. I began crying from a place that I never want to go to again and continued off and on for five weeks.
My physician’s assistant saved my life.
PLEASE GET A CHEST SCREENING WHETHER OR NOT YOU HAVE EVER SMOKED IN YOUR LIFE.
My surgeon told me that if I had waited a year until the symptoms were more pronounced, the cancer would have filled my lungs and I would have had weeks to live.
Lung cancer is the leading cause of death in the United States. More people die of lung cancer than all the people who die per year from the next 5 cancers:
- Lung and bronchial cancer: 792,495 lives. ...
- Colon and rectal cancer: 268,783 lives. ...
- Breast cancer: 206,983 lives. ...
- Pancreatic cancer: 162,878 lives. ...
- Prostate cancer: 144,926 lives. ...
- Leukemia: 108,740 lives. ...
Yet, there are no “lung cancer awareness” months, walks, drives, ice bucket challenges, or cute ribbons to wear.
I will write more about the medical experience, the fear, the doubting of my survival, the awful internet research which led to more doubting, but most of all, the extraordinary spiritual support I received.
I am not sure I will ever understand all of this. I am not sure I will even absorb all of it. All I know is that if I had not forced myself to keep that appointment, for instance, if I’d still been working and had been too busy to go as I had been before many times, if I had waited to have the CT because I was too afraid, it would have been too late. I’m one of the lucky ones. Why? There is no answer. EVERYONE should be one of the lucky ones. But now comes the more important question: what will I do with this experience to transform my life from the inside out? How will it change me to help me reach the core of why I was put on the earth in the first place?
It is 10:00 p.m. I have a sick dog who needs petting (yet another strand to this story and one that does not have a happy ending), and I am exhausted. My love to you all who wanted to know where I’d gone. I’m here, better than before.