Today was not awesome.

The medication that I take at night for my chest pain certainly helps me to be more comfortable but I still wake up like clockwork every 4 hours. Mornings are the hardest. I assume that’s because I’m moving around more and my body doesnt love that just yet. I’m grateful for some relief even though it’s not perfect.

I had my platelets checked today prior to my procedure. They jumped up to 139! Though that is quite literally the lowest “normal” number, it’s still within normal range. This is exciting, though I can’t help the thought that crosses my mind next…could that mean the Afinitor has stopped working already? A quick search & Dr Google let me know that a side effect of Afinitor can be that there is a sudden temporary drop in white blood cell or platelet count. I’ll take that as a good sign! I have scans Monday that will give a status update also.

Next I headed over to the procedure. I had lots of questions, of course, and she was already armed with answers and suggestions before I even asked. The thoracentesis was started right away like before, except this time it hurt…a lot worse. The one I had before vacation was a bit worse than the first one, which I assume has to do with the fact that my body is expecting the procedure to some degree.

The doctor was just getting ready to start draining my lung when a sharp pain started. It was on the same side but only hurt a little on my back where the catheter was and hurt like crazy in the front. I recoiled without meaning to and repeatedly asked her to stop doing anything for a moment. Tears fell before I could process them and I grabbed the pillow in front of me as hard as I could. I knew that I needed to slow my breathing since I couldn’t breath very well from the start and the quick, sporatic breaths weren’t going to help anything. I slowed my breathing and my tears. The pain subsided after a few seconds and the doctor was able to begin draining my lung. 1700 milliliters later and we were done.

The doctor indicated that it’s called referred pain. Basically, it’s pain that shows up in an area different from its actual source. I assume that the catheter may have hit a nerve going in that wasn’t numbed. This caused my body to react to the pain but in a different area of my body. She explained that internal nerves are quite different than external nerves, like skin. It’s actually quite common that something will hurt internally in a location totally different than the source. This can also be partly to blame on muscle memory. After my last thoracentesis, I had significant shoulder pain. It was sharp and hurt quite badly but eventually went away. This was likely the same thing. A procedure was done internally on my lung and chest but the pain was felt elsewhere.

The doctor also indicated that the pain will continously get worse with each procedure because of scar tissue, muscle memory and even brain memory (apparently your brain recalls pain better than anywhere else). Obviously the pain was bad today and will only get worse for the next procedure – which will likely be within the next week to a week and a half.

Her suggestion was to have a PleurX Catheter put in place. It’s a “permanent” catheter that would be placed on the right side of my body and access the pleural space around my right lung. It would be similar to the drains that I had after my mastectomy but much smaller & lighter. I would leave the drain attached inside of me, roll up the drain and tape it to my side.  Initially it will need to be drained about 3 times a week. A home health nurse will come to my house in the beginning to show me & Joe how to do everything. Once we are comfortable (what would I do without this man in my life?), we will be able to do the drain ourselves. I will continue to see the doctor periodically to discuss the frequency of the draining, the amount and the catheter itself. It will remain indefinitely. An outpatient surgery is required in the hospital so that I am put to sleep and the procedure itself is done in a sterile, controlled environment.

The other option is to have a pleurodesis performed. There would basically be an irritant put around the pleural lining of my lung so that my lung sticks to the pleural lining, therefore not allowing any fluid to form. This is a relatively invasive procedure and would require a hospital stay of a few days, at minimum. It also requires that there is no fluid in my lung at the time of the procedure.  Since there is such a significant amount of fluid forming in my lung regularly, it is not likely to be the best option at this point. In the future, once the fluid begins to form less and I can reduce my drainage amount, it will be a good option.

So, tonight I rest. I still have pain in my chest, what I now know is called referred pain, as my lung learns to re-expand again. In the next day or two I will receive a call to schedule this surgery. I’m sure there will be lots of phone calls to make and plans to (re)arrange. But for now, I rest with my sweet boys and enjoy a lung full of air. ❤

I would like to give a special thanks to a fellow breast cancer warrior. She helped talk me through her experience with pleural effusions, thoracentesis, PleurX and pleurodesis. She took time to give me details in the day to day living with these options and helped me to understand what to expect. I am grateful for such wonderful people in my life. ❤

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