Sarcoidosis and Sunrises

 It's been over four years now since being diagnosed with Stage 3 Pulmonary Sarcoidosis. I'd never heard of it before.

I had gone to the doctor to check up on a spot that had appeared on my neck and wasn't going away. With family history of skin cancer, and a few early 'suspect' spots of my own, I wanted to rule it out. But my doctor caught sight of my cough.

"What is that cough?"

"It isn't COVID...."

"How long have you had it for?"

I had to think. It arrived in the bushfires the year before - I thought it was throat irritation and kind of left it there.

"Almost a year....when the bushfires were here. It's just like a spasm....not a real cough...And it seems to get worse when I'm stressed I think... About that spot..."

"Let's deal with the spot later - X-ray first."

Like an obedient little minion, I obeyed. The radiographer (?) made small talk to keep me calm through the whole ordeal.  

"Ah so you're a smoker!" He proclaimed while coming back out from the screen in-between 'snapshots'.

"Uh...no"

"But you used to be!" He laughed.

"No....I've never smoked a cigarette in my life...."

He pulled a face that only said 'oops' and went quiet. I don't even remember leaving the centre that day.

My doctor managed to get my Lung Specialist to see me a lot sooner than usual. 

I didn't fully know it at the time, but I hit the jackpot with both ladies. 

Sitting in the specialist's waiting room I was the youngest by at least 30 years, two patients had 'carers' with them, and one had a portable oxygen tank. I fumbled with my papers and watched my feet.

The specialist actually proclaimed at first that I was so young and healthy! What was I doing there? I gave her a brief history. She spoke about learned physical behaviours and said I probably picked up the habit of coughing during the bushfires and could probably teach myself out of the habit with plenty of honey and green tea.

Then she opened the xrays.

"oh"

---

"Oh yes, that's not normal."

She first said 'sarcoidosis'. At least that's what she thinks it might be, then went on to talk about this really rare autoimmune disease and how it works, and how coincidentally she had just been studying it, attending conferences on it, and working with tertiary colleagues on it....but the diagnosis wasn't easy. In fact, aside from a biopsy...which was going to be difficult seeing as it is in the lungs.....the only real way to diagnose it was to rule everything else out. She specifically said that we had to rule out some very nasties first...

What followed was CT scans, blood tests and a whole lot of appointments and phonecalls and needles (and bills).

After the CT scan, I got a phonecall from my doctor to 'come in immediately'. No, telehealth wasn't an option.

I sat down opposite my normal doctor's colleague - she was on leave and asked him to specifically deliver the news that the scans showed 'something'. In fact a lot of 'something'. They wanted confirmation that I was following my specialist's plan, then I was getting a biopsy - regardless of whether it was going to be transthoracic (a needle going from outside in) or transbronchial (in through the airway). 

It's not just in my lungs, it's in my ribs, spine, and looks like it is in some organs too.

It took me awhile to register what he was saying, and when I returned to work I was feeling a little numb.

I opened up the radiography report from the CT scan and tried to decipher the results.

multiple myeloma

Don't google such things.

I saw words such as '6 months to 5 years' '55% will live to five years' etc

I don't think you can really explain how it feels unless you have been there. Time actually stood still. Night came and went. I was a zombie trying to put on a face for everyone else - especially my daughter.

The days and weeks followed - the biopsy was sped up. I started to get my 'affairs' in order. 

I also planned for a tenth birthday party.

As much as I tried to shield my family, I think my husband caught on that this thing was potentially 'bigger' than a little cough. He assured me that everything was going to be okay. And regardless of the future - they were going to be okay.

The biopsy was only supposed to be day surgery. A couple of hours at most. I was in early with an amazing team who made me feel very at ease, and I don't even remember counting...

...but when I woke up, there was pain, I couldn't breathe, there were alarms, I was surrounded by people rushing around, and I was being propped up with a portable x-ray. 

"Does it hurt?"

"Can you breathe?" They started wheeling me out.

"Can you speak?" An oxygen mask was fitted over my face.

<gasp> <gasp> *cough* <gasp>

Somewhere in the distance I hear 'pneumothorax' and I remember rolling my eyes. They said the risk of a collapsed lung was likely. Especially given the state of mine.

I see the face of the anaesthetist again smiling down at me.

"Back again, are you?" I nodded, gasping like a drowning fish.

I was kept awake while they put the little tube in through my side. The relief was almost instant. Or maybe it was the pain killers. 

Either way, I could breathe.

I also learned that the lung doesn't 'collapse' as much as the air leaks out and squashes it flat.

I also learned that taking your little 'lung box' for walks and trips to x-ray makes it very hard to keep covered up - when hospital gowns tie up behind, but your tubes hang out the side....

I spent the next few days in the cardio ward in my own private suite. 

My loves came to visit and eat hospital food with me.

When I could go home I spent the next few days in slow motion.

But the phone call.

The phone call.....my specialist started talking about recovery, management, who she had been speaking to in regards to my condition - oh wait...did I mention it isn't cancer?? Oh sorry I should have started with that!! 

I don't remember the rest of the phonecall. 

I know she confirmed sarcoidosis.

I know she explained that it was Stage 3, which meant I didn't have fibrosis of the lungs yet. 

And I know she mentioned that although it was stage 3 (pulmonary), I still had multi-organ involvement, and we'd need to investigate what it was doing to my bones, and these were the prescriptions that I would be starting with, and this is how long it might take, and this is going to be a lifetime thing......

But she spoke for a lot longer.

And all I really took in at the time was 'it isn't cancer'.

I really wish more people could hear that outcome. It was so sweet to hear.

Yes, I have an autoimmune disease.

Yes, it has caused irreparable damage.

Yes, I could most likely die from it one day.

But not anytime soon. And now that I know I have it, I can manage it.