u/alwaysalittleangry

I am writing this as a cathartic session and also as a sort of case of how my RA has delayed my final diagnosis. At least I believe it did a little.
Sorry that it is going to be long winded. I tend to talk in person like that too. But maybe you guys can cut me some slack in this situation lol. Just let me yap!

Background:
I was officially diagnosed with RA in 2022. Went through a few different treatments and two rheumatologist. Finally settled somewhat on Rituximab. This causes significant immunosuppression. Simple illnesses take me a couple weeks to recover from. So prolonged periods of being sick doesn’t usually phase me.

March: Earlier in the month I caught a bug and started coughing. When my cough did not ease, I went to the GP and got prescribed antibiotics in case it was mycoplasma, also got on Symbicort due to some breathlessness. I also had my regular appointment with my Rheumatologist this month, so I mentioned my coughing. She was not worried, we both believed it was the immunocompromised body taking longer to recover.

April: Coughing continued, starting to include phlegm. It gets worse with activity, eg just walking to the car causes a coughing fit.

Mid April: Went back to the GP, he is worried and wants a chest x ray. X ray shows a chest infection. I decided to bring this to my Rheumatologist. She starts a course of Prednisolone. She believes it is still my body have a really hard time fighting off this particular bad bug. I thought I got a little better after the steroids.

End April/Early May: We had our annual family holiday! I was still coughing and the day before our flight, I had an intense sharp pain on my right side around the ribs. It was like a knife stab whenever I coughed. Googling and all that led me to believe it was probably intercostal muscle strain or costochondritis. I really didn’t want to affect our trip, so I brought along paracetamol. It helped blunt the pain a little. Throughout the trip, the pain would slowly ease a bit, then after a really bad coughing episode, flare up again.

Mid May: I have an appointment with my Rheum to discuss my scheduled June Rituximab infusion. I did my regular blood tests and other than a higher CRP and ESR, which aligns with my on going “illness”, nothing stood out. All functions were great, all counts looking good.

End May: Side Quest! My annual Pap smear came back abnormal and I was scheduled for a colposcopy, hysteroscopy, biopsy and probably more that I can’t name off the top of my head. Results came back benign phew.
All this time, I never stopped coughing. Every time I wanted to cough, I had to stop whatever I was doing, squat down, hug my ribs tight to brace, then cough. My rib pains would slowly dull over a few days then restart afresh. Knife stabs when it is fresh, a fist punch when it is dull.

Early June: During my scheduled Rituximab admission, I had a CT scan of my thorax done. Immediately my Rheum brought in a Respiratory Specialist. I had a small nodule in my right lung and ground glass opacities and other things. Rheum says possibly the start of Interstitial Lung Disease. Respi says for now, we are going with Bronchiolitis and monitoring it closely. They gave me IVIG treatment and a lot of pain control for the ribs. Highly suspected rib fractures. Phew thank you for painkillers. We decided not to biopsy the nodule right now because they think it is due to the inflammation because of my RA background. A lung biopsy is not zero risk so we thought we could wait and see if it shrinks as we control the inflammation.

End June/Mid July: I try my best to rest. But I am a SAHM, even with a helper doing the house chores, I still gotta be a mum. My son fell sick, we were in the hospital for a while, then he had to stay home from school for a week. I still coughed, though much improved. The rib pain still persisted though. I had a follow-up with the Respi. I did a chest x ray and it showed four fractured ribs. She and my Rheum got me back into the hospital again. They needed me on absolute bed rest. I was discharged after 4 days with a strict rest plan. Was also referred to a physio, as I was constantly breathing shallowly, not coughing effectively, and had to learn how to work around my fractured ribs. We are still working on bronchiolitis.

End July: I reached out for help from my family and they really showed up. Everyday. I love them. They are the best!
With physio and rest, my ribs slowly stopped hurting. However, I started feeling pain in my lower back. I attributed it to a strain, having coughed hard in a bad position. Over the next week, the back pain got worse. Finally on a Saturday night, I fell. I was walking to the bedroom when a sudden sharp electric seize happened in my right lower back and my right leg just gave way. Luckily I did not face plant, it was a sort of controlled drop onto the ground. Next day, everybody was off on their regular Sunday activities, leaving me home alone. I “dropped” another 3 times and realized I am now a fall risk. I could not even call an ambulance because I cannot get to the front door myself. I am not having them breakdown my door!

Aug: In the hospital, with my back in excruciating pain whenever I coughed. My husband says I looked like I am having a seizure. It was so painful I just refused to cough if I could. I stayed in a child’s pose position most of the time, hoping that gravity would move the phlegm up enough to sort of huff/throat clear it out. Got an xray and MRI of the lower back. There are many lesions all over my pelvis and spine. Due to my history of RA, they are thinking it might be sarcoidosis. However, it is exceedingly rare in a person of Chinese ethnicity. Of course cancer is at the back of everyone’s mind. Either way, a biopsy is needed to confirm so we got the lung biopsy done. And of course I fell into the minority and had pneumothorax from the biopsy. Needed a chest tube inserted. Did a PET scan the next day. By Friday the diagnosis was confirmed. Stage 4 Lung Cancer. Adenocarcinoma. It has spread to my bones, in many places, especially in my spine and pelvis. In between all that happening, they gave me a PCA (Patient-Controlled Analgesia) and it was a lot of relief from the pain.

I started Chemo asap as the doctors determined my disease was moving too fast to delay. I also got the genetic testing results and I am fortunate enough. It is EGFR exon 19 deletion. There is a readily available oral targeted therapy for it. Unfortunately, my Rituximab immunocompromised body plus chemo’s side effects has already started rearing its head. I caught an infection and am fighting it right now. I have not even left the hospital yet lol.

Final thoughts: I wonder if without my RA, would my doctors and I have been more worried about my cough? Would we have been more concerned about how I could fracture so many ribs? Would we have decided to biopsy the nodule the moment we saw it? Or am I just looking for something to blame?

Oh well. I still think I am very fortunate. I have amazing insurance that covers private healthcare, my upcoming medications and chemo session. And my team of doctors move at lightning speed. I made a cross-stitch of my situation while in the hospital, and they put it as their group chat photo for me haha.

I am still going to fight hard. So damn hard. For my son, I will be there for many many more milestones!