I was to get a PleurX catheter installed on Tuesday. However, I thought my appointment was in the afternoon whereas it had been in the morning. It was rescheduled for the next day and I spent Tuesday sleeping–exhausted as the day before the rest of the contents of my studio had been moved by (I kid you not) the two slowest movers on the planet. They did a good job though so all’s well that ends well.
My appointment on Wednesday was of the bright and early variety but this time I was where I was supposed to be when I was supposed to be. Johnnied up, on the table, being prepped. And then the surgeon comes in and tells me that they won’t be installing the PleurX because my insurance covered the procedure but not the supplies ($1000 a month to maintain).
I was stunned. ‘Why could you have not told me this before I was on the table?’ I asked. No response. The surgeon then went on to explain my options–another thoracentesis or a talc procedure, which would require admission to the hospital. He also allowed that after two thoracentesis’ the risk becomes greater than the value.
Fabulous. I asked them to call my oncologist (they texted her). Explained that time was of the essence here–that I would be starting back on the same drug (TNO155) that almost certainly initiated my rapid onset plueral effusion. That the PleurX catheter was being installed so that if my lung started to fill with fluid again, it could be managed.
In the end, I had my third thoracentesis in a two week span. It hurt like hell. This time they were able to extact 250mm of very viscous fluid. The x-ray following the procedure reported ‘residual loculated left pleural effusion.’ So, in short, my left lung is a project.
Yesterday I met with Jess. The good news is that I may be able to start on TPX-0131 in two weeks. Having a horizon line is helpful in these circumstances and now my eyes are set on that. And my blood work looked great.
As for the aborted catheter, perhaps it shall be a non issue. I took my dose of TNO155 on Wednesday, but the way the trial cycle works, this week is my week ‘off’—no TNO155, just lorlatinib. So that alleviates my worries per another massive pleural effusion in the coming days. As it looks now, I may have to go back on TNO155 for only one week. There may be need for yet another thoracentesis, but a catheter may have been of limited usefulness anyway.
I remain exhausted and short of breath (but less so after I get my lung drained). However, this body of mine still wants to live.
I plan on honoring that. Much time has been devoted to getting my affairs in order–a great comfort. But now I need to get back to the good stuff. To that end, dinner out with Diane and her husband Dave last night, a meal with another friend on Saturday and a date on Sunday.
I’m alive I’m alive I’m alive.
Your strength, your courage, your tenacity- our Army, our Support & our love for you💕🥰❤️
Oh my goodness!!! No words. Just sending hugs.
Other than the absurd, botched Catheter “Incident”, this is basically good news! Keep up the fight, you have lots of support!👈🏽✊🏽❤️
I am cheering for you, Linnea! Thank you for sharing your journey. 🤗
Oi! Those early morning prayers from all of us are helping. You sound a little better, hope you do feel better.
Yes you are my friend!
You are an amazing human Candi. One deals with whatever comes their way, but you deal extraordinarily well. I haven’t known you very long, sure glad I do. Just know there’s a couple in Idaho rootin for ya. Much love, Terri and Roby Brown