Sunday, January 22, 2017


I hate waiting. Waiting for answers and waiting for more information. Waiting means patience and that is something I have no more of. No more days to waste, no more time to just sit, no more weekends to lay dazed and confused, no more weeks to let slide by. No more....waiting. But yet, here I am. In the patient holding pattern that is our life. Waiting for the next test result. 

I had an MRI done when we came home from Miami. I had been having balance issues and dizziness but no other explanations were completely clear (could have been a number of things) so I did the MRI. It was just of my brain so it wasn't so bad. A "short" hour long test and I was ready to go. I really didn't think much was going to come of it, but I got a call. Something showed up so my oncologist wanted me to go see a neurologist. He called about an hour later and wanted me to be there in an hour and a half - nuts, and at first I couldn't do it, but an appointment got canceled so I went. There was contrast uptake in my cranial nerves. He pulled up the images and searched for a little bit and then he found it - ever so faint uptake of dye in my cranial nerves. Everything else was normal (and pretty cool looking). He did the barrage of testing that comes with a neuro consult - look at my finger, touch your nose, walk on your toes, memorize these three words, etc. I passed with flying colors. I had had some facial muscle issues while we were in Miami - all of a sudden I dripped water out of one side of my mouth - but it had gone. And my balance was doing better since I started PT and my dizziness better now that I was moving more. We decided to do some digging before doing further testing. 

The weekend passed and I had found some interesting case studies that I thought would keep further testing at bay, but the neurologist decided it wasn't enough. I needed an LP to check my cerebral spinal fluid. Boo. My biggest annoyance? I HATE local anesthetic. With a major passion. In reality, that was my only hold up. I hate local - avoid it at all costs. So I went in on Friday - watched the new president give his speech while I signed paperwork and the doctors and nurses took my vitals (a great way to get a good blood pressure 😜), and then he did the lumbar puncture. It really wasn't bad - but I tensed everything up in fear of the hated local, so my back was sore for a couple days. Most of the testing will take about a week, he told me, but a few things will be back in a couple hours. I was hoping those things would be negative (not sure why I thought they would be), but he called me a few hours later. No bacteria - that's a good sign. But elevated lymphocytes and protein. This - of course - tells us something is happening, but gives us no conclusion of what. So now we wait. And wait. And wait. It's been like two days and I am already done waiting. It's going to be so much longer. Especially if they don't find anything - which will mean they will test things like a thousand times to be sure. There are two main possibilities - one, the Hodgkin's is in my brain; two, it's a side effect of the medication (akin to Guillian Barre syndrome). We are hoping for two, but that then puts me at an impasse for treatment. Although I'm having no symptoms so is it really that bad? I don't know enough about neurology to know. Just something else I have to read up on. 

I'm annoyed. I do enough research, and I have better things to be researching than this. Plus I have some cool new books I'd rather be reading (yes me!). So if anyone wants to dig around and figure out how bad uptake in my cranial nerves is, and then about if that has been seen with Nivolumab (or Brentuximab since I was on that before this, and let's throw in ABVD to boot since I have NEVER had my brain scanned so they would never have seen anything before, hell throw in high THC cannabis oil and acupuncture into that mix - might as well pull info on the lot of it!). Then just let me know if all this was even worth the dreaded WAITING. You would think they would have faster tests by now. If you can sequence my entire genome in like 10 days, why can't you do a test on my CSP in like three hours. That would be nice. 

1 comment:

  1. I'm sorry to hear about this latest development. Waiting is never easy, but I can't imagine what it must be like when you're waiting for something like this. Keeping my fingers crossed that it's nothing serious!