How did I get here?

After the recent shock of my diagnosis, & prognosis, people have begun asking me how it came about, how it unfolded. What prompted me to even ask the questions that have led us to this alarming situation. These are very valid questions! Here we go:

First of all, by all outward appearances, I’m fine. Perfectly fine. I’m healthy, I’m strong; I’m not losing weight or slowing down. Everything looks great - no changes. This is another reason that it’s just so hard for anyone to believe my prognosis! Unless you’ve seen the medical charts or heard the doctors, it’s just extremely difficult to accept or even believe!

In late February, I found myself coming down with the third in a series of bronchitis attacks. Now, there are allergens in the air & the weather had been erratic throughout the winter. Everyone I knew was ill with sinus infections &/or bronchitis! I did the usual over-the-counter stuff & tried some antibiotics, but it seemed to just keep returning. As I felt the next bronchial infection sneaking up, I went to see my primary physician & I just said, “Something’s wrong; I’m NEVER this sick!”. She shot me with a steroid injection, gave me some antibiotics, & sent me off for a chest x-ray.

To my shock, the chest x-ray showed a small growth. WHAT??? Okay, that was alarming enough. But I figured since it was small & accessible, it was probably Cyber-knife or possibly surgically removable. The x-ray led to a CT, an MRI, a PET Scan, & a lung biopsy. Okay - still small & removable; I’m okay. I don’t smoke, don’t drink, & have no chronic issues; I can buck up through these minor surgeries!

But that PET Scan opened up an entirely new nightmare! It displayed 2 spots on my liver. WHAT??? Okay, I’m thinking that those small spots are also, most likely, removable. Cyber-knife zap-zap-zap; all gone. Maybe surgical removal - clip, clip, clip - fine. I’ll have a couple of dents, but the internal spots will be all gone & I’ll be fine.

Since the original lung biopsy discovered that the spot was right up against a rib, they wanted to get a better view of the lung spot by doing another biopsy from a different angle. The initial biopsy was hindered by that positioning & they hadn’t clipped as much of the core as was desired for a full assessment. Plus, those secondary spots which had been identified on the PET Scan now eclipsed the lung spot all together! WHAT??? A liver biopsy was now urgently needed. The liver biopsy was performed on April 19th, & the second lung biopsy was now scheduled for April 24th - the following Monday. Needless to say, I was anxious for results from the liver biopsy, but I’m still thinking that all 3 of these spots are still easily pluckable. This is 2017, for goodness sakes! Get ‘em outta me! It’ll be easy!

In the prep room for the lung biopsy the following Monday, the surgeon came in & asked if I felt it was necessary to perform the follow-up lung biopsy. That was a strange question... why was he asking me? That was creepy. I explained why the initial biopsy surgeon had requested another biopsy, but I immediately realized that this guy must know something that I didn’t. I asked him, but I knew that he couldn’t tell me. So, instead, I asked if he felt that this second attempt would answer any questions that hadn’t already been answered. He said no, we don’t need another biopsy. Oh. I asked if he had read the liver biopsy. He said that it wasn’t yet printed, but he was aware of the results. Oh, no. Well, damn! My heart fell into my stomach. That meant that the team had realized what they were dealing with, & it was probably pretty serious. The lung biopsy team then removed my IV’s & monitors, & that surgeon phoned my pulmonogist to set an appointment for me to get the bad news later that day. Well, this is some real shit happening now! Christian was thinking that this was good news - no more tests; but I suspected something more ominous. I was correct.


We went to the pulmonology office that afternoon. Yes, it’s cancer. Yes, it metastaziced into the liver & into a lymph node in my central chest. Yes, it’s already at Stage IV (there IS no Stage V) & is completely inoperable. No surgery, no Cyber-knife, no radiation will be able to reach it... my only hope is chemo. WHAT??? She gave it a name: adenocarcinoma. This was on Monday afternoon - the 24th. Next, an appointment with an oncologist for Thursday - the 27th... & some time to get accustomed to this new life plan.

We went home & each did some research - just to make sure she wasn’t being overly dramatic with her assessment. There it was, “adenocarcinoma”. A life expectancy just after 3 years of discovery is at 17%... after 5 years, it drops down to 4%. WHAT??? How can this be true?... I feel FINE!!!

On Thursday morning, the oncologist did some poking around on my neck lymph nodes, checked my tongue, my fingers, & my breathing; then, we had a chat. He asked me to tell him everything I knew about my current circumstances. I told him what I knew, & he confirmed that my account was accurate. I then asked him what type of time frame I have to stay alive. He said that he couldn’t predict anything, but he could offer me statistics. Okay, go. With no treatment, I have only 6 months to live (yeah, that was tough to hear, Christian choked up at this statement!). With generalized, broad-spectrum, chemo, I could raise that life expectancy to 1 year (better than 6 months, & worth the inconvenience of treatment). If they can identify a specific type of chemo that causes a reaction in my specific cancer cells (called “targeted treatment), that life expectancy can be raised to 2 or 3 years. He agreed that there was no chance for any surgery, radiation, or Cyber-removals. Chemo was my only option at holding this back. It’s blood borne, & it’s spreading. WHAT??? (Who IS he talking about??? Who IS this happening to???) Damn!... it’s me!!! Well, THIS is a lot to think about! But there’s simply no time for investigating any options or for studying any alternative treatments. The decision to proceed with chemo was ours to make - right then & there. Yes or no - no gray areas, & no time. Of course, we’re in! The option for having the “targeted” chemo would have to be done in the pathologist’s lab, & would take some time. He told me what could be done in the local hospital, but recommended a referral to MD Anderson because they have carte-blanche to all clinical trials & compassionate care options. If I stayed local, he would have to request all approvals for the trial medications on trial. Okay, it’s MD Anderson; make that referral!

At the request of the oncologist, I immediately had a brain MRI done - I mean I walked to the department with no appointment & they did it - stat. He was afraid that the cancer had already reached my brain. I left there at 11:00, they took the tests directly to the pathologist to read, & had the report posted in my chart my noon. No cancer has spread to my brain - what a huge relief! But their urgency at getting this report read & publicized tells me that it’s a ticking time bomb, waiting for the opportunity to move in & invade another organ.

Now, back to this oncology visit: he said that, although he has to quote statistics for my type of cancer, he also said that this case was especially difficult. He can see that I’m a healthy person with secondary or chronic issues. As far as life expectancy, I should be able to break that statistical mould, but he can’t make that prediction or offer any guarantees.

So, that’s where we’re at! I went in with an annoying recurrent cough &, within a 6 week span, came out with a life sentence of terminal cancer with a very short prognosis! This is the craziest thing I could ever even imagine! I feel fine, I look fine, I AM fine... except for that invisible cancer that has ability to kill me in 6 months! WHAT??? It doesn’t even make sense!

This week, we wait for pathology to find a chemo that causes a reaction with my cancer cells. The pathologist is using cells from the liver biopsy to determine if there’s a sensitivity. If so, just like a bacterial infection would react to a specific antibiotic, that would be the chemo to attack my cancer - “targeted” treatment. That’s the 2 to 3 year option. If it can’t be “targeted”, I’ll have the generalized chemo, which will put me in the 1 year of life expectancy lane. As you can imagine, thing are pretty tense around here! I carry my phone with me everywhere & we jump & lunge when it rings

- Gayle -