April 7th, 2016 I went in for a chest xray due to high 103 degree fever and sharp knife cutting pain in my right lung only. I was working 45 mins from home this day and scheduled to leave for a Mexico vacation trip the next day so I got into urgent care right away.
Got zpak, cough syrup with codeine, and a few other things, chest xray done= pneumonia.
Pneumonia.never had that in my life til now!
I am 36 years old have had asthma my whole life, and never pneumonia!
1 week later, after being sick as a dog on my vacation to Mexico, lost my voice, couldn't party like a rockstar with an all inclusive vacation...I went home to have another chest xray done as the pain in chest wasn't getting better and I was feeling worse.
Chest xray looked the same. Except I questioned "what is that round ball thing"? To which my primary care doctor said let's let the radiologist figure it out.
Came back abnormal , send for CT Scan right away.
CT scan 1 week later, that came back large MASS in lung, possible carcinoma all over my report..send her to specialist right away.
Went to Northwestern University Hospital on May 6th, 2016 for bronchoscopy. This was the least invasive procedure to be done in the realm of biopsies. So my family and I chose this route to go.
After procedure I landed in hospital for 7 days back home in Colorado due to pleurisy and still pneumonia that has not gotten better.
Another CT scan now showing lots of fluid in the pleural lining of my lung. This is the lining that is between your lung and your ribs and you are supposed to have only 2 tablespoons of this fluid normally, I had 30 ounces! It was the worst pain ever. Felt like level 4 contractions coming out my back! I was so sick!
Took a week in hospital and lots of pain killers and I was out, still in pain when I breathed. The results were not back from the bronchoscopy yet so the mass just stayed there. Northwestern had me going telling me I must have some type of fungal ball, very rare for me to have any cancer. So it took almost 6 weeks of the waiting game to find out I DON'T have fungal. Again, nothing changing still hurts to breathe.
Found a great doctor with National Jewish Hospital here in Colorado= #1 leading respiratory hospital in the U.S.! Dr. James Fenton MD
He took over my case and he took me seriously. He said "this is has been going on for almost 3 mos" we know what is is NOT....and we need to get a move on this quickly. He hands down believed it was cancer from the start of looking at my case.
Of course, no one wants to hear that! And that is why doctors don't go for the worst. No one wants to diagnose a 36 year old woman , non smoker, healthy mother of a 20 mos old daughter, and wife to a great husband with diagnosis!
He sent me for another biopsy, this time it was the needle core one, under CT scan so they could be precise to get directly to the mass touching my lobe lining where the pain was coming from. Results this time came back part positive for cancer and part not. How can this be? Well....they can only get such tiny tissue thru a needle tip. What we knew was it was clearly a tumor, and clearly abnormal, but pathology couldn't declare exactly what type, etc. Next step knowing a tumor and abnormal was to remove it.
Next step PET scan. I was injected with a radioactive dye that shows any "activity" in tumors thruout your entire body. My mass lit up at a 5.3 measurement. Normal is less than 2.0 , again another trigger to say I had cancer.
It took my Dr. Fenton a lot of convincing to get me to go thru see the surgeon as I have been thru enough hospitals, poked at, felt sick enough, and so many meds later. And with no clarification as to cancer or not exactly, I didn't want to remove an entire lobe of my lung. No one does.
But, I found top notch surgeon, Dr. Myles Guber, and scheduled appt. We had a pack together...I asked him clearly for the following: only remove lobe if 1. it can not be determined with pathology in the room while I am laying on the table what it is, or 2. it is clearly cancer
This would eliminate a 2nd surgery should it be cancer. I mean...I am already out on the table for a 4 hour surgery....who wants to redo it?!
When I woke up, my lobe was gone. They could not determine, so instead of having to do 2nd surgery he followed my pack orders.
Within 2 days I was released from ICU. Doing the conga trail with old people in my area walking , talking and breathing great for post op. Result were in: Stage 2b lung adenocarcinoma
And...to make my case even stranger...there was only 1 lymph node in my ENTIRE lobe they took out. I made them go slice the whole thing looking for more. Typically you have 8-10 in 1 lobe. I had only 1. And this tells me I was blessed with the 1, either born that way or what not, but this is the only way cancer can spread to the rest of your body..thru your superhighway lymphatic system. And when I have only 1 way for it to spread out of the lung....it didn't make it there in time!
I do have 2 small nodules on my left lobe, however, my team of doctors has stated the chemo should eliminate them. They are too small to do biopsy on right now.
Next step oncologist. Dr. David Trevarthen. Recommended by my Dr. Fenton (who truly saved my life by making me get the lobectomy and listening and diligently responding to my emails and phone calls and worked hard to make sure I could be here today writing this to you)
Oncologist says, gotta do chemo. It's the protocol. I am his youngest lung cancer patient. What does that say? People don't usually live with lung cancer. Because there is no nerve endings in your lungs, you don't actually feel pain. Typically people are stage 4 or terminal by the time they find this as it has spread to the rest of you body, kidneys and created tumors everywhere and that is the cause of the pain you feel. Lots of pathology testing later, we have determined I had a gene mutation in ALK which is a protein in the gene of the cancer tissue. This is a good thing as if this were to come back again, I would be able to take a targeted medication specifically for ALK mutation.
Dr. T the oncologist has stated he is seeing more and more "young women" ages 35-45 with this type of cancer. All nonsmokers. He called it an epidemic.
6 weeks later post op: I am finally feeling my older normal. I am ready for pilates and hiking and working out again. Went on a trip of a lifetime cruise to Alaska, hiked with a baby of 27 lbs on my back, did about 13,000 steps a day on pedometer.
Now: Chemo infusion parlor day. BEAT down time. 4 rounds of advanced strength ...so basically packing 8 rounds into 4 rounds. As my body is young, my kidneys should handle it, so they say.
The best advice I can share to anyone is BE YOUR OWN ADVOCATE! If I didn't have such a flexible job and blessed with that, I would not have been able to travel, get the help I needed in a demanding timeframe. I didn't wait. I called doctors every morning to see if they had cancellations so I could steal a spot. They are busy! Especially the specialist doctors! And ..do you research. Find a TOP DOCTOR. Get 2nd opinions but find the doctor that works to the best of his ability in his department. You don't have to "like" them, you just need them to be the best at what they do. And that is that!
