Interstitial Lung Disease (ILD)

Before today, I wasn’t familiar with the term Interstitial Lung Disease, but I am now! 

I had requested to meet with my oncologist to discuss the pros and cons of a treatment change to positively impact my lungs as I’m sick of being sick or fearing getting sick so I’m missing out on the things I’m fighting to live for. We had that appointment today.

He reiterated that my pneumonitis is treatment related and not disease related plus confirmed that they did not find cancer cells in my bronchoscopy. However, he also stated that it was previous treatment that put me where I’m at. My current treatment isn’t helping or hurting my lungs. And it is effective on the disease so he is not supportive of a change while it it working. Ugh. But, I get it.

So then we talked about ILD and looking at it as a separate condition with potential treatment dedicated to it. That sounds interesting!! Unfortunately this is not an area of expertise for my oncologist so he is going to consult with my pulmonologist and his colleagues in Boston.

The good news is he understands my position and wants to help me find a way to not be so fragile. I’d like to be reliable and be able to make plans that I can count on plus be able to attend the important events without the likelihood that I’ll end up sick for months.

I’m hoping there is a reason for a trip to Boston soon!

Ugh

I was really hoping to go over a year without being in the hospital, but I only made it exactly a year. Oh well, I needed to go in so I did and am now improving after being home for a couple of weeks. 6 days in a little room is a long time! I was tethered on one side with oxygen and the other was the IV. For 6 days. At least the food was decent. 

Unfortunately all this resulted in a 3.5 week chemo break which means hair has started growing so now my glue-on eyebrows won’t stay on. Such problems. Eyebrows really do make you look less sick so I’m now looking forward to my hair falling back out so I can put them back on. 

In the meantime, I’m rotating through my jewelry for a little pretty.

I’m planning to talk to my oncologist this week to see what the pros and cons on a treatment change would be and if I could come back to this treatment if what we try next doesn’t work. I’m sick of being sick and would like to do something to improve my lungs. Supplemental oxygen really isn’t fun. Time to advocate.