Most of the time my posts are pretty upbeat-this blog is about thriving with cancer after all. But….and there is always a but….there is a flip side. For me, that is anxiety, crippling at times.
This week was one of those times. I noticed a strange sensation at the tip of my nose. It felt like a hair was stuck there and I kept trying to push it away. But there was no hair-just a sensation. That may not sound like a big deal to you, but the symptoms that defined my leptomeningeal disease (LMD) were simply that: weird sensations in my face. It didn’t cause a disability, just numbness in parts of my face and sensations of my eye and throat doing things that they weren’t actually doing. So even though this new sensation was different and on the other side of my face, I started worrying.
The more I worried, the more I imagined the feeling spreading. In my more rational moments I knew that I had no numbness, that this sensation was not like the previous ones and that it was on the other side of my face. (My oncologist thought that if the LMD recurred, it would be in the same places. But that was his just opinion as far as I know). These rational moments were not much competition for the terror that I felt every time I thought of the LMD coming back. I know there are many interesting clinical trials going on, but from what I have read, most do not accept patients who have previously had chemotherapy. I don’t know of any new treatments if Tagrisso stops working. Thinking about a decline and death from LMD is just awful as it takes over your brain and spinal fluid, so you pretty much lose all capacities (at least, that is how I understand it; I have never really heard what happens in end stage LMD)
I was a crying, Xanax popping mess half the time and a somewhat rational person the other half. I was beginning to feel schizophrenic. It has been over 3 1/2 years since my diagnosis and this was the worst I had felt in that time. I couldn’t even meditate; Xanax was the only thing that helped. Thank the powers that be for Xanax!
Gradually I came around. The rational mind beat back the terrified one. The Xanax calmed me down. The sensation seemed to weaken. I slept a lot. I am pretty ok now, though I won’t truly feel better until I have the MRI and get the results back.
Thinking about this episode on my walk this morning. It occurred to me that maybe part of the reason I lost my sh*t wasn’t entirely about the episode itself, but just because I am exhausted from maintaining the facade to family and friends that “everything is fine”. Most of the time I am fine. And I know that others have problems too and I don’t want to burden them with mine. And everyone wants to hear that I am fine. I am very aware of all that. But everything is not fine, at least a lot of the time, because the terror is always lurking in my brain. I can’t forget that there is a high probability that my cancer will recur. If I thought I would just get a tumor in another organ, I could deal with that. Chemo again, radiation – I could deal with that. But this, this scares the hell out of me because I don’t know what they could do for me at that point. So while I am doing very well most of the time, that possibility is always in my head.
The postscript is that the MRI was fine, my cancer hasn’t recurred and I’m not going to die. At least not this time. I just got another 3 month reprieve.