Initial Diagnosis

September 27, 2008

For those who do not already know my story, I’ll try to give you the background.

The Diagnosis: I had no symptoms. None. I wasn’t short of breath, didn’t have a cough, wasn’t in pain. I thought I was in excellent health. Nothing could be more from the truth. I was 42, and had spent a very active, enjoyable summer with family and friends. That year, 2001, we had spent a long, extended trip through the Tetons, Yellowstone, Rocky Mtn National Park camping, hiking, and visiting with friends. Later that summer, I spent a week on Dale Hollow Lake on a house boat with my kids, parents, brothers and their families and grandmother. We cooked out, skied, and fished. At the end of summer, after the girls went back to school, I decided to have hysterectomy on the advice of my doctor. He requested a pre-op chest xray. It was that chest x-ray that gave the first indication that something wasn’t right. He called before the surgery, asking me about possible previous infections– thinking that maybe I had an underlying pneumonia. I hadn’t been ill, not even a cold, in years. The chest x-ray showed ‘infiltrates’. Deciding I was otherwise healthy, we went ahead and treated the ‘pneumonia’, completed the hysterectomy, and followed-up 2 weeks post-op with another chest x-ray to make sure the infiltrates had cleared. Only they hadn’t.

So, that same day, he ordered a CT scan. I clearly remember that first CT scan; or actually, I remember the look on the x-ray techs faces. The exchanges. We did the scan, and the tech left the room and got someone else. Together they reviewed the pictures, then additional views. More review, finally, a radiologist came in, reviewed the computer pictures, and left without speaking. The mood had changed; everyone looked serious, solemn. The biggest change was nobody looked directly at me anymore. They talked and told me to return to my doctor’s office and they would send them on to him immediately, but they didn’t look at me directly when they spoke.

When my primary doctor reviewed the scan with me, he was less reassuring. Before, he was saying, “this is probably nothing to worry about“; now although he said the same words, it was with more doubt, more concern, less confidence. What the CT scan revealed was more, much more than ‘infiltrates’ as the chest x-ray had noted. It was a huge 8 cm lesion in the left lower lobe and multiple nodules in the right upper lobe and couple of nodules in the right lower lobe. He said, “we have to find out what this is” and sent me to see a pulmonologist to get a biopsy.

Still, I felt healthy and couldn’t image what could be going on with my lungs. I kept reasoning with myself that it couldn’t be much because I didn’t have symptoms. Maybe it had always been there. Maybe it was nothing. I could feel my confidence fading with each new doctor visit. I spoke with pulmonologist and he suggested a bronchoscope procedure the following day. Then I would see him back in his office in two days after the scope. He tried to be reassuring, saying he would be really surprised if this turned out to be anything other than benign.

The next day, he called and asked me to come into his office at lunch. I knew already, I could tell be the sound of his voice. It was tight, thin, tense. It would not be good news. At the office, he explained he had found a “few” cancer cells. I focused on the word FEW. To me few equates to three. I had threecancer cells. I was lucky, we had found it early, I would be OK. Only, I didn’t know lung cancer. Nobody is ‘lucky’ with lung cancer. That day would forever change my life in ways I couldn’t have ever in a million years imagined. Nobody is lucky.

My next appointment was with a cardio-thoracic surgeon, and he started talking about metastasis and how lung cancer often metastasizes outside of the lungs. I was stunned. The next few days were full of more x-rays, brain scans, bone scans, CT scans, MRI’s and a PET scan. Each test brought more anxiety, fear and apprehensive and I was losing all confidence. I am a nurse and have spent my entire adult life in the back halls of a hospital and now, somehow, it all felt foreign and terrifying to me. Nothing felt familar.

I was scheduled for surgery to remove the left lower lung the day after the PET. The day before, I prepared myself with a full body massage, manicure and pedicure. I prepared myselft mentally for an invasive and serious surgery. The morning of surgery, the surgeon came to my stretcher and plainly stated, “I can’t do your surgery.” I didn’t understand, I thought maybe he had a schedule conflict, and begged him not to cancel me– I was ready and primed. His eyes remained focused on me and stated “I can’t help you”. I know he repeated this phase multiple time before I understood what he was truly trying to tell me. He meant he couldn’t help me because the cancer had spread too far, but I wasn’t prepared for what he said next.

He then told me the PET scan showed the cancer had spread to the neck, base of the skull, cervical spine, thoracic spine, my clavicles, my lymph nodes in the neck and medistinum, my liver, my adrenal glands and of course the left lung. I was stunned, completely shocked. How could this be happening? Why wasn’t I sick? I don’t remember much else about my conversation with him, except his steel blue eyes and him telling me “things don’t look good”. I remember feeling like I couldn’t breathe anymore. It wasn’t that I could not breathe in, I could breathe ok but if felt as though all the oxygen had just been sucked out of the room. My life was completely unraveling, my confidence was fading fast and nothing seemed to make sense any more.

The same day, I saw an oncologist. She was less than optimistic; telling me “this was bad, extremely bad”. She explained the cancer was stage IV, and was cool and distant, explaining that my lack of symptoms was most likely denial. I was devastated, tearful-no actually sobbing- begging her for different news. She ordered additional scans and test, repeating some of what had already been done.

Two days later I returned to the medical oncologist’s office. She told me then I had stage IV lung cancer, with a 6 to 8 month prognosis and my treatment would be chemo IF I choose to take treatment. Her recommendation would be to just go home and spend time with my family as “the end result will be the same, and the treatments (chemo) will only make you sicker quicker”. All my tears and pleading hadn’t changed her mind.

The nightmare, my worst nightmare was underway.