December 10, 2015 - Rosy Fog-filled Glasses

I can definitely say this is an evolving story. We still have results and opinions coming back and with each one your brain rapidly shifts in a new direction. I imagine that is my fear playing out. It definitely has my attention. To catch you up on events between now and last Monday, yesterday we had our house inspection on the house we are purchasing. As I reach for my phone in the middle of the inspection, I start to see test results coming back in. There sits the scan in my inbox waiting for me. I was torn between opening the results and getting great news and awareness of opening the results and 12/09/15 turning into a day of before and after. I let them sit there for over an hour unread, but plaguing my every thought. Enough was enough, I couldn’t concentrate anymore. I grabbed my phone and went to my car and opened the scan report.

We now know the following:
• The CT results did show mild fibrosis in the upper portion of the lungs.
• The CT also showed a small lung nodule (likely not even worth mentioning as nodules are known to appear and go away without any intervention. They are seen all the time on scans.)
• The CT showed a few other things that likely have no relevance here (a small splenic splenule, some notes about the location of some of the great vessels, etc)
• The CT showed I do in fact have breast implants. I can now prove that Lead Plastic surgeon did in fact what he said he did in the last 6 surgeries. It gave me a chuckle when I was climbing on the CT scan table to tell the tech “hey FYI, in case you need to know because I never know when people do need to know…I have had a mastectomy and have breast implants.” Well, she evidently didn’t need to know.

You will be happy to know I kept it together quite nicely. I guess I kind of deep down knew they would see fibrosis. It just made sense that they would with my symptoms and history. I was able to drive back to the inspection ( I had left to go pick up Ron's phone) and enter back into the house with smile in tow. It wasn't until later, when I told Ron, that I had tearful moments. And then again when I typed it out to my family and prayer warriors. I may be stoic some times, but i'm a sucker when relaying emotional news to my family.

We also now know (12 hours later):
• As we were suspecting fibrosis as a possibility (and now proven by the CT scan) we had also sent off labs to check for an auto-immune process. In the last 24 hours, two of those labs came back positive.

Honestly, this new finding got under my skin. Albeit, the slugger is that this specific test can be positive in any autoimmune process/disease (lupus, sjogren’s, scleroderma). It can also be positive in idiopathic pulmonary fibrosis. The titer result was "low" and not severe, so I have that going for me. So while we want to trust that this fibrosis is radiation induced, we have a family history and now a positive immune marker that is muddying the waters. Earlier I was 100% sure in my mind this had to be radiation induced. I’ve had massive amounts of chest radiation. Radiation causes fibrosis. I have fibrosis.

I’ve reached out to Delightful Fibrosis Guru (DFG), I guess she now deserves to have her own name, and I get the impression she is a little baffled too. We both had hoped the CT would come back negative, and instead maybe I was dealing with an asthma process. Now that the CT came back positive, I am sure we were both hopeful the lab markers would be negative so we could more assuredly point to radiation induced fibrosis. She keeps saying my history is complicated and that she isn’t sure what to make of things yet. My grandfather having had fibrosis complicates the picture, and my suspected history (though biopsy negative) of sjogren’s syndrome complicates the picture further as it can also cause pulmonary fibrosis.   In efforts to cover all bases and perspectives, DFG has decided to take my case to the pulmonary rounds this week where the experts from pathology, radiology, and pulmonary disease come together to discuss complicated cases. She continues to be delightful, and I am grateful for her thorough approach.

I’m truly hopeful the lab marker is positive for some separate process and not an indicator of idiopathic/immunologic fibrosis which is a ballgame changer. And if it is radiation induced, like I truly want it to be, I still don’t have a full grasp on what that will mean in the long run. Has it just started and is still evolving? Has it been going on for years (as I have had asthma symptoms since college)? Is it going to progress? Has it already peaked?  Just a lot of unknowns right now. Are you completely confused yet?

So where does this leave me: we have a diagnosis (fibrosis); we now have a positive immune marker (do I have sjogren’s as some physicians have suspected? do I have something else? do I have nothing and it is inconsequential?) And what is causing the fibrosis (Radiation induced? Idiopathic?)? And where is this going and at what pace? The very last thing I want is for this blog to become "Trading in the Airbags". We just don't have time for such nonsense.

It also leaves me feeling a little out of sorts. It’s moving at a fast pace with labs coming back day by day, but also very slowly as a lot of the results alone aren’t leading us anywhere. You also know I am an instant gratifier so this waiting game is for the birds. I am beyond grateful to have DFG leading the way for me and pulling in the expert minds. I still want to be very confident this is radiation induced, and maybe the damage has peaked and I will be left with just these symptoms and nothing more. I won’t lie though, it’s hard to focus. I have on my rosy glasses but they have intermittent fogging. I do have peace in the overall journey (I know blessings are already here and still coming), yet I am also cognizant that there may be some other emotions coming to play. It’s also smack in the middle of our house sell and purchase. I have boxes up to my rosy fog filled glasses and lots of paper work crossing the screen. It’s busy, and we are tired, and all of this fibrosis stuff makes each day of balancing life, house, and work a little more cumbersome.

That’s all I’ve got for now. It’s a story being played out sentence by sentence. He is the master of my story, so I know it will be worth telling. Anxiously awaiting what Act 2 will bring.  And because I need to be reminded daily…… “The blessing of God is not the absence of trials, but rather the glory of God through them.” Let’s all say that 3 times together.

(P.S. I'm very grateful for all of your encouraging words through texts and emails and FB posts. Forgive me if I didn't get back to someone yet. It's incredible to have an army of warriors to do life with. This still may all turn out to be trivial, but the journey along the way feels very raw, and you make it less so.)

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