About

This is not complete as I’m slowly working through my story.  Check back for more…

Things all began for me right around our 11th wedding anniversary.  I had this day or so where we though I was fighting a touch of the flu.  Fever, general aches and just all over not myself.  We pushed through that without too much issue then I developed a cough.

At first we thought nothing of it, a cough is one of those things you can deal with for a long time and just have to tolerate.  For some reason I just felt like I needed to see my doc so I made an appointment.  They heard whatever they heard in my lungs and sent me off with a z-pack to help fight/prevent the bronchial mess that she thought could be developing.  A few days go by and things aren’t changing…  in some ways getting a little worse.

I went back a 2nd time and it was the same routine… they heard a little something, so they tried a different antibiotic.  We didn’t really question it because we’ve had bad luck with the Z-Pack in the past and they were still just thinking it was some sort of bronchial infection that we could clear up.

I started to get a little more persistent when I realized how little cough syrup was working for me – even the awesome stuff with codeine.  Nothing I took would really help with the cough and there were times the cough was literally debilitating.  It was really starting to get ugly.

I went back for yet another visit as thing just didn’t seem to be improving.  At this point I was over it…  we were pushing over a month of this and I finally was starting to baffle the docs.  I was put on a third antibiotic but this time we decided it was time for an x-ray.  Once it was realized that the meds I had been taking were the same ones that would be prescribed for pneumonia and it wasn’t working the other theories started to come into play.

I went for a chest XRay and was told the next day there was definitely something going on in my right lung and we should follow up with a CT scan to get a better idea of what we were looking at.  As you can assume the CT showed some consolidation in my lower right lung and given that I had been on antibiotics for so long they suggested I take my case to a Pulmonologist.

Well my appointment with them resulted in a diagnosis of (ready for the fun stuff?) Bronchiolitis obliterans organizing pneumonia (BOOP), is a form of non-infectious pneumonia; more specifically, BOOP is an inflammation of the bronchioles (bronchiolitis) and surrounding tissue in the lungs.  They sent me home with steroids and the instructions to return in a month.  My mind immediately went to “ANOTHER MONTH?!?!?”, so I questioned what if I didn’t see improvement.  After being reminded things won’t get better overnight it was suggested I call back if things didn’t seem to be getting better after two weeks.

Two weeks go by (mind you this is all around the holidays) and things are just not changing.  I put a call in and they tell me on the phone we are going to go with the next step which would be a bronchoscopy so they could get in there and see what was going on.  We’re all thinking just some sort of obstruction that needs cleaned out…  never did we really think we’d get a phone call the following Monday morning telling us to come in to discuss the findings.  Although slightly concerned the husband and I almost joked a little about how it couldn’t be cancer.  Boy were we in for one hell of a shock.

How does a 37 year old nonsmoking mom get lung cancer??  Well overnight I learned lung cancer is a lot more common than most of us realize and it’s very scary because the statistic aren’t good for those of us fighting it.  The good news in all of this is that I have ALK+ lung cancer which is both rare yet well researched.  Thankfully they have some amazing targeted therapies for us that help control this nasty disease.  The unfortunate part is none of these therapies will cure me and my body will build up resistance to the drug within time (average is about a year) and it will no longer work.  I guess you can say I sort of won the lottery with my diagnosis in this weird way.  At least there are some great drugs available for what we hope is the next several years that allow me to feel almost normal while fighting this new war I’m in.

There are currently two FDA approved pills for me and several are in various stages of trial.  This is why I’ve decided to spend a little of my time and energy fundraising.  LUNGevity has created a fun specifically for ALK+ researched (because of an amazing group of fellow ALK+ warriors who, like me, are fighting as hard as we can for the help we need) so I know, for a fact, the money I raise and donate will fund research that will specifically benefit me on some level.  It could very well fund the next trial that saves my life.

This little piece of cyberspace will be a place for updates both personal and of the awareness/fundraising nature.  You are more than welcome to share this with anyone you know who may benefit from my journey and I’m always looking for anyone willing to assist with events and fundraising – on any level!  Thanks for stopping by!