Stage IV Lung Cancer - What Made It Real
Last updated: July 2019
Just after my 33rd birthday, I was diagnosed with stage IV NSCLC adenocarcinoma with a positive EGFR mutation. At the time, I was a single mom with a 7 year old daughter to raise. Once my migraines turned out to be the tennis ball size tumor in my brain, I knew I was in trouble. It wasn't so much the doctors telling me they removed the tumor, but it was the information that came after. I'll never forget 11/27/12, when the doctor told me, "The tumor in your brain is malignant. It came from your lungs...you have lung cancer". I knew at that instant it was stage IV (thanks to Google) because it spread to another organ.
Shock after hearing the prognosis
The following days I spent recovering in the ICU are somewhat of a blur. I remember friends and family coming in and out, trying to keep my spirits up. I won't lie though, I did have my cell phone, and with that, the internet. Quickly, I began googling statistics (which is totally stupid since most of the stats are 5 years old or older). Since these statistics were published, much as changed in the cancer world.
I wasn't aware I was diagnosed during lung cancer awareness month or even know there was a lung cancer awareness month. I'm amazed at how naive I was. I asked my doctor how much time I had left, a huge mistake. The first thing he said was, "Well, you could walk out the door and be hit by a bus". I think he was trying to make me feel better about what was coming next. He replied, "At this point, with what we know since we are still waiting on tests, 12-18 months."
My stomach flipped and I tried to contain my tears. Family and friends were already in tears. I suppose they had already googled as much. The main thing that ran through my head was my fears and concerns for my daughter, not myself. I searched far and wide throughout the internet for long term survivors. The outlook was grim, to say the least.
Is ignorance really bliss?
They say ignorance is bliss. I miss the ignorance of not knowing my future. Who wants to know they have somewhat of an expiration date. I also miss the energy I used to have as well as the way I looked. My former self was so confident but was quickly humbled when I received the news. It all felt like a bad dream. I didn't want to talk about it or tell anyone because doing that would make it "real". And I didn't want it to be real. I wanted it to be that nightmare.
It's strange that I wake up most mornings feeling like I'm still living with my parents and in school. Sometimes it takes me a few minutes to realize, "Hey, you're the adult, get your daughter up for school". I have no idea why my outlook changed in that respect. It really is perplexing. It started about 2 years ago and I guess it may be a yearning for my youth and the good old days. But, I'm pushing 40 now, so why I think I'm still so young in my head is beyond me.
Telling my story today
After my diagnosis and discovery, I recovered in ICU, then my mothers. People were asking on Facebook what the prayers were for from close family and friends. My phone was blowing up. I knew if I talked to anyone I would completely lose it, so I wrote. I've never been one for writing, I never even kept a journal. But, one of my motivations for starting to blog was not being able to talk about it. Talking about it made it real for me, and I wasn't ready for that. There are other reasons I continue to blog, but that was the first.
Beside manner matters! What has your experience been?