Those brave men who faced the original D-Day on June 6, 1944, knew they had a major battle ahead of them.
They knew they had to fight with everything they had or die.
They knew they had to rely on the other brave souls around them to do their jobs so they all could together complete the mission successfully.
On September 20, 2012, I had my own personal D-Day. That’s the day I was told I had “non small cell mixed adeno squamous lung cancer.”
I’ve told family and friends and announced it on Facebook. Because obviously, this will be affecting business as usual for me, I decided also to put the news here on my blog.
And I’ve decided to go further than one announcement. Because I have received such a wonderful outpouring of love and support, as well as numerous questions about what now, what stage, where I’ll be treated, and more, I’ll be posting regular updates here on my blog under the tag “Personal – Health.”
So now… the story of how it all began up to where I am today.
Back in April 2012, I was hospitalized for pneumonia. It was painful and honestly a horrible experience – from the disease itself all the way to every laughable stereotype you’ve heard about nearly inedible hospital food. While at the hospital, I had daily chest x-rays showing a large portion of my right lung completely consumed with fluid.
After returning home, I received regular chest x-rays to be sure the pneumonia and all associated “gunk” was clearing up. The x-rays continued to improve. That is, until June, when it just leveled off. By then I had seen a nationally-ranked pulmonologist, Dr. Doud, who assured me I had a raging, very serious pneumonia that was clearly taking a while to fully resolve inside my body.
To set our minds at ease, however, and because the chest x-rays were essentially unchanged from May through the end of June, he ordered a CT scan of the area. On June 28, the day before leaving to visit my in-laws for our summer vacation, I underwent my first CT scan. The doctor called me later that day to say both he and the radiologist who read the scan agreed it was not a cancer, but likely just more of the leftover pneumonia “gunk.” He suggested a follow-up visit at the end of the summer.
In the meantime, my primary care physician, Dr. Bergner, was following along with my case. I’d seen her and she also ordered some of those regular x-rays and decided I should have the care of the pulmonologist. In early August, I had another follow-up appointment with her and another x-ray. That x-ray looked exactly the same as it had two months ago. That’s when she decided I needed to do something other than wait.
Off I went to see a general surgeon about having a look-see inside my lung to get a diagnosis. While meeting with him, he said, “I’m a surgeon. I love cutting into people. But I don’t think that’s what you need.” He thought I could actually get away with a less invasive needle biopsy and aspiration procedure. I was to have an interventional radiologist use a guided CT scan to direct the needle to the kiwi-sized mass in my lung to suck out as much gunk as he could. That was scheduled for the following week.
On Monday, August 27, I arrived for my first outpatient procedure, ready for my needle biopsy. There I was, with the nurse poised to jam me with the IV to get ready for the procedure, when the doctor came in and told her to wait just a minute. He said, “I’m an interventional radiologist. I love sticking needles into people, but I don’t think that’s what you need.” He explained the density of the unknown mass was definitely NOT a fluid. He feared he’d do his job, the sample would come back as normal lung tissue and then I’d need a procedure called a bronchoscopy anyway to get eyes on the area. He called and consulted with my pulmonologist, who agreed a “bronch” as they call it, would be best.
On September 5, 2012, I arrived again at the outpatient surgical center for my bronch. This one would be a flexible bronchoscopy, and require numbing of my gag reflex – an altogether decidedly yucky process – and then a twilight anesthesia, so I’d be asleep but not all the way under. This surgery revealed an obstruction in my airway. You can see from the images, the healthy airway on the left and then the 90% blockage on the right.
This was a surprise to everyone, as this growth hadn’t shown up on any tests, x-rays, or the CT scan. The doctor took tiny samples of it and sent them for biopsy. He’d never seen anything like it, and he’d seen his share of cancers, so he felt confident it was likely one of several types of benign tumors that could likely be removed with a cutting edge laser surgery. Two days later, on Friday, September 7, at 5 PM, Dr. Doud called with the good news: the tumor was benign. No malignancy. Not cancer. I could breathe a sigh of relief going into the weekend. I was so excited I told Facebook and within hours had literally hundreds of happy congratulations messages. Dr. Doud referred me to another specialist at a different hospital, an interventional pulmonologist to zap the tissue away so I could get back to my regular life.
On the day I met with the also nationally-recognized interventional pulmonologist, Dr. Kovotitz, his staff ran a breathing test on me. It was then things started to look a little more serious. I was down to, at best, even with medication to open my airways as large as possible, 68% lung capacity. Dr. Kovitz examined me, read the tests, looked at the images and decided to perform a rigid bronchoscopy to remove the tissue. He told me while it was good news that the first biopsy came back negative, he cautioned that it’s more difficult to prove a negative than a positive. “We just don’t know what’s behind that area we can see in the images.”
Two days later, on September 13, I went to a different hospital’s outpatient surgical center and was readied for my rigid bronc, which thankfully involved me being fully under anesthesia, with no need for that nasty gag-reflex numbing (thank God for small favors!). Kovitz removed what he intended to, plus went 2 centimeters deeper than he planned (apparently in the bronchus, that’s like saying a mile more; it’s a huge distance). In all he removed a marble-sized piece of tissue, sent it for biopsy, as a matter of routine, and told my sister, who was with me, what happened and next steps.
Recovery this time took longer and was more painful than the first bronch. By the time I had my follow up visit exactly one week later, I knew something was likely wrong. They had called several times during the week to tell me to bring someone with me for the appointment, that they don’t deliver any news over the phone, and sent me for another emergency chest x-ray because I was experiencing an unusual amount of pain.
My husband, Brent took the morning off work to join me at the appointment. And that’s when we heard the news. Cancer.
Interestingly, there was no rush or flood of emotions. My first reaction to any kind of news is, “Ok. So what do we do about it?” I was immediately in action mode. And apparently, the wheels of the medical system turned really fast.
Kovitz’s office faxed my results to my primary care physician, Dr. Bergner, and to my pulmonoligist, Dr. Doud. By early afternoon I was booked for an MRI the next morning, had an appointment with a surgeon in the afternoon, and a PET scan for tomorrow.
Here’s what happens next, which as I’ve spent the weekend reading about is exactly the right course of action: the MRI and PET scan will determine whether the cancer has metastasized into other areas of my body, including my brain. After that they may be able to offer staging information on where I am. The more confined and localized, the earlier the stage.
Now, having said all that, a long-time friend who is a nurse suggested I send my slides to Mayo Clinic AND Sloan-Kettering for second opinions. According to an article with some interesting information here, there was a study published in 1989 that found the positive misdiagnosis rates for three cancers have not changed since the 1930s; 10 percent for stomach cancer, 14.3 percent for lung cancer and nearly 23 percent for liver cancer. With one benign reading and one malignant reading and the fact that sometimes pathologists get it wrong, it seems there could be a tiny glimmer of hope the tumor is benign. However, it seems those false positives typically involve being told there is some form of rare cancer, or an unusual cancer for that part of the body, or are done hastily while the patient is lying on an operating table. None of those things are true with me, so the chance of a false positive in my case is very slim.
Upon further reading, it seems the PET scan tomorrow will be more revealing. PET scans show metabolic functioning. So the test lights up areas of the body with increased metabolic function: the heart will light up, as will the brain, all normal. Cancer will also light up wherever it is in the body. If we see it light up in my lung, we know that the second biopsy is confirmed. (But I’m still sending my slides for a second opinion anyway – even if only to make sure they type of cancer is confirmed.)
So that’s where I am today. This post could be even more marathon than it is, but I’ll end it here saying other than being winded when walking up the stairs and feeling pain when I breathe in, I feel fine. My outlook is positive and I’m doing what I need to so we can get this thing done. With any luck, it’ll be a simple cut & paste job, where the tumor is removed and there is no further medication, chemo, radiation or treatment. Being young with zero risk factors – never smoked, no second-hand smoke, no asbestos remediation in my background – all leads to what could be a promising prognosis. I’m hanging my hat on that!