I feel like someone just stood in front of the screen and opened and closed the placeholder CUT! On that last little round of who knows what the heck that was. Now we are at take 2.
Apparently Methotrexate intrathecally makes my meninges mad. Mad enough to flare up and cause crazy fevers that I have never seen before. The thermometers at the hospital were digital and I maxed them out… so, I was kind of hot…
Pro tip – after using expensive cooling blankets, ice packs and all sorts of torturous ways to get my temps down, the way that worked best was just cold clothes on my bare skin. When those warmed up, swap them out. It works! It just made me wet and clammy, not screaming in pain crying from how cold and unfreakingcomfortable a cold blanket is.
We also had my PET-CT last week after everything else. It had come back a mixed bag, some things good, some things not as good – but the left lung was the most worrisome. We decided to wait and get the official report, which came back about how my oncologist expected and the lung is my naughty child (outside my brain and cerebral spinal fluid of course). The bottom area dried up (it isn’t all water logged like it was) but it has a thick netting of tumors in my lymphatic system inside the lung.
As I have gone in to appointments the last few days my doctors and nurses have remarked on how well I look and that I am getting my pep back in my step (slowly but surely). After a week bedridden in what is considered a comfortable hospital bed, and not really truly getting a full night’s sleep or eating a solid meal for over a week I looked and felt a bit haggard (not to mention that little surgery thing we did recently). Now I know to look at my images for big dark circles around my eyes (as I am learning that is how I show how unwell I am, black circles around my eyes…)
When I met with my brain/spine dude he asked what I wanted to do (I guess some people quit after an episode like this). Having enflamed meninges was really not fun, but I am not done yet. I want to kill these stupid little cancer cells in that fluid and growing on the outside of my brain and spinal cord (and the inside of my brain, and my lungs, and my lymph nodes, and… I just want the cancer to DIE). So we started Topotecan, the next in line for my intrathecal chemo line-up. I had an infusion Monday and one on Thursday. I also started Xeloda Friday morning (3 pills AM and 3 pills PM) – 14 days on, 7 days off starting Friday morning. So we will do one less intrathecal chemo next week to be gentle as I onboard Xeloda (I am also taking steroids when I get intrathecal chemo).
I think that is part of what I lost the last couple of weeks, the part of me that held onto a hope that somehow maybe I could see NED (No Evidence of Disease), maybe I am not dying (someone find me that cure in time, anyone?), maybe I will see more winters and summers and get Fifi to 30k miles. Somehow I lost the part of me that held on to just a tiny bit of hope that pulled me through my bad days. I have started to find that piece of me and pull her back on board. I worked on “The List” to see what I need to get moving on (and consider what I am missing). As I said years ago, my life can’t end the day I got diagnosed with cancer, and I can’t fall into that trap now, my life isn’t over until it is over. The show must go on (I have a hot air balloon ride to book from the amazing Women Tech Council and a Segway tour to get moving on too – from my friend’s dear parents!).
I am trying to not be too sad that we aren’t at Burning Man right now. I had done so much work to prep, but I am ok. I sent the beer I brewed as good will for next year. I am clinging to that ounce of hope that I can go next year with less immediate surprises or changes, but I am not sure that my life will be without its rollercoaster. I am going to exercise and get my strength up. My bone mets have been nicer lately and my pain has improved some – so now is a good time to get beefy strong. I am actually shocked a bit at how much better my pain has been the past week or two. The weather is starting to turn here, which is usually the worst time. I’ll give it time, but something is doing well at not pissing off my bony mets.
Mike and I are going to try to do something special-ish to make up for the lack of Burning Man adventures this coming week. Mike also really needs some mental unwind time. We need to find something that allows his brain to rest for a moment or two. He has been burning the candle at both ends. In the meantime, keep on keeping on.