Lupus and Caregiving: A whole new vocabulary

I learned a lot of medical terms in my early days with lupus, and “thoracentesis,” or the removal of fluid from the lungs via a needle, was one of the first. “Pleural effusion”, the accumulation of fluid in the pleural lining of the lungs, was another. I remember having my lungs tapped for the first time like it was yesterday, even though it was years ago now. Before the procedure, I was anxious, hopeful, and everything in between. Little did I know that those big, scary terms would quickly become part of everyday Gorman family conversation. Today, I continue to monitor for pleural effusion regularly under the care of my pulmonologist (lung doctor) after all these years. In fact, I consider him second in command of my disease management.

So when my mom recently had to have her abdominal cavity tapped for fluid, via a “paracentesis” to remove "ascites", it was relatively familiar territory. This fluid that continues to accumulate in her abdominal cavity is a common side effect of late stage ovarian cancer, and we are thankful that the hospital where we have some 4L of fluid removed weekly is just steps from her assisted living home. So far, it’s a workable solution, and I find these terms becoming part of our everyday language once again. I reference them daily as we continue to help my mom along this journey. 

The ascites is definitely proving to be the most troublesome of my mom’s cancer symptoms. In the beginning, I was happy to share my past experience to ease her mind about what to expect.  I described the immediate relief you feel once the fluid is removed, the absence of pain as it’s being drawn, and the ease with which the whole process is done. I told her it’s done as an outpatient procedure, requires just a small bandage afterward, a little bigger than a band-aid, and you can be in and out within 30 min. All in all, a pretty good deal for a hospital visit. 

I was in awe the first time my fluid was removed, and I'm pretty sure my mom experienced the same feeling. You’re surprised that your body is capable of producing so much of something that’s not supposed to be there,  and impressed that it can so easily be removed. You’re mostly thrilled to have a solution that works so immediately, and has so few lingering effects.  The second time around, however, is a slightly different story. I recall walking into the 2nd procedure feeling confident, knowing what I was in for. I was also convinced that it was merely a follow-up to make sure they got everything the first time. I was sure there would be less fluid: no way my body could repeat the same mistake  

But I was wrong. There was even more fluid the second time. Almost double. Ugh. Or as my teenager would say, “Bruh.” 

My poor mom experienced the exact same disappointment, shock, and dismay, as she, too, had twice as much fluid removed the second time around. And her third procedure, even more. 

That’s what terminal cancer can look like. It it just keeps progressing, and you feel like you keep lowering the bar to say, “okay, so now this is what we should be expecting.” It’s a challenge, for sure. 

But the silver lining is that during her fourth paracentesis, they removed slightly less fluid, so maybe her second diuretic medication is starting to work. We’re days away from putting in a PleurX, or a semi-permanent, long term drain, which we hope will bring her even more relief, but I'll keep you posted on that. 

In the meantime, I’ll be adding another couple of new terms to the household vocabulary.