Of Star Trek, Steroids, Stadiums, and Sanity…

I have not posted for almost two months now. I keep thinking I am just a few days away from feeling “normal,” and I delay posting until then. But normal never seems to quite get here.  Sigh. Star Trek The Star Trek convention in New York City really did wear me out. I came home utterly drained and with another infection, but very grateful and happy that I’d had enough energy to complete the trip and participate in it pretty well. It was fun and absolutely worth the effort. But it took me a round of antibiotics and a couple of weeks […]

Ups and Downs

Ups. One of the BIG ups in my life is that since my brain tumor was removed, the hip and shoulder problems that I’ve dealt for years are, very slowly, getting better!  I didn’t fully realize how bad things were until my muscles started unclenching and untwisting and loosening.  What a difference!  Frankly, it’s a little disconcerting at times.  These muscles have been clamped down for so long, it feels scary for them finally to let go.  Joints are clunking into places they haven’t been for years.  It feels like my rear end might fall off.  But it also feels […]

Infections, Steroids, Mammogram Callback – Really?

Monday I felt good.  Then it went downhill. I took two long, slow walks this past Monday – it was the furthest I’d walked in months.  It felt great.   In fact, I felt so good that I forgot to take my 5 p.m. steroid dose until 9 p.m..  It would have kept me up if I’d taken it so late in the day, so I opted to skip it and then email my endocrinologist the following morning for instructions. My endocrinologist told me I could use this as an opportunity to try tapering down the steroid from 12.5 mg […]

Tapering Steroids & Bisy Backsons

I emailed my endocrinologist on Monday, telling him I’d really like to get off the steroids as soon as possible. So as of this past Monday, with his blessing, I have gone down from 15 mg of hydrocortisone to 12.5 mg each day.  Until today, I was feeling pretty good.  Today, I’ve been tired since I woke up.  But fatigue is a common symptom of weaning off steroids, so I don’t think it’s any big deal. I am currently reading The Tao of Pooh by Benjamin Hoff.  It’s pretty good reading for someone with cancer, I think.  The chapter “Bisy […]

Oncology Visit and MRI: When Black and White Becomes Gray

It has taken me awhile to mentally and emotionally process the results of last week’s 3-month follow up Oncology visit and MRI.  I don’t know what I was expecting – clear answers, perhaps?  But I’m getting the feeling I’m not in Kansas anymore, Toto.  Clear answers seem few and far between on this unexpected journey of mine. The Bottom Line:  My MRI Results. My MRI results on Wednesday were not bad, but they were not definitive.  (The more I read this sentence, the more amusing it becomes.  When is anything definitive?  Why did I once think anything was?) The MRI […]

Brain Tumors, Seizures, and Me – Oh My!

I made an unexpected visit to the UVA Emergency Room yesterday.  I thought I was having another seizure. I’d woken up feeling horrible – like I was going to pass out.  My muscles were twitching.  I felt spacey and very tired.  Scariest of all, I had pressure and twitching on my craniotomy scar, and my face looked a bit puffier (I didn’t think that was possible – but it was).  We were afraid it might be a brain bleed. Marshall called my oncologist’s office and she suggested I take an ambulance to the emergency room.  So Marshall called 911 and […]

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