My Unexpected Journey Blog - Page 2 of 6

Abbey Normal

Jan 20, 201712 CommentsFatigue, Hospital Visits, Infection, Keppra, Oncologist Visits, Seizures and Brain Tumors, Side Effects of Medications, Uncategorized, UTIAbnormal EEG, EEG, Keppra, Sleep-deprived EEG

They told me that my last EEG was slightly off. My first response to this news was, frankly, to be a bit offended. What do you mean my brain is “slightly off”? How judgmental of you, Medical Establishment. You’re not exactly the epitome of normality either, I want you to know. Actually, “slightly off” wasn’t the technical phrase they used. The technical phrase was something to the effect that I had a couple “spike and slow curve” weirdnesses (“weirdnesses” is the technical term) on my EEG reading. This could be a sign of seizure activity in my brain. Or it […]

Wired Again

Dec 9, 201615 CommentsUncategorized

I am having an EEG at UVA Hospital as I write this. Nothing is wrong, I’ve just asked my oncologists to help me get off my anti-seizure medication since I believe it contributes to my ongoing fatigue issues. I’m not sure my doctors were necessarily thrilled with the idea – after all, many doctors do like their medicines, and I have to admit they can come in handy sometimes – but I am grateful they are indulging me. I really want off these meds! But it comes at a cost. They will have to taper me off the meds over […]

Of Star Trek, Steroids, Stadiums, and Sanity…

Oct 28, 20163 CommentsFatigue, Infection, Steroids, Tapering Steroids, Urinary Tract Infection, UTIBeing Tired and Cancer, Brain Cancer, Fatigue, Fatigue and Cancer, Frustration and Cancer, Patience

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 […]

Post Trekkie Exhaustion!

Sep 14, 20168 CommentsUncategorized

That thingamabob in Hannah’s hands is called a bat’leth. It is a Klingon fighting weapon. Who knew? Our daughter, that’s who! In fact, Hannah was interviewed on the SciFi Channel at the convention: During the interview, they asked Hannah Star Trek trivia questions – and no easy ones as far as I was concerned. She got all but one correct and won a piece of Pez for her efforts! Could a parent ever be more happy, proud, and profoundly tickled? I don’t think so! Hannah loved every moment of her 13th birthday present, and it is a trip we will […]

The Slaytons Go To NYC Star Trek Convention!

Sep 1, 20164 CommentsUncategorized

Well, if you ever told me I’d ever be going to a Star Trek convention I would not have believed you. Not that I don’t like Star Trek – I do – but … but … Our daughter REALLY likes it. Like, a LOT. Going to the convention is our present to her for her for her 13th birthday, which is tomorrow – the day the convention starts. And, although I blush to admit this, we went ahead and bought the VIP tickets. Really? Yes, really. What can I say, except having brain cancer has made me a […]

Aug 23, 201612 CommentsUncategorizedCancer assumptions, Cancer MRI Results, Children's Author Brain Cancer, Follow up, Fran Cannon Slayton Brain Cancer, Fran Cannon Slayton Little Bee Books, Fran Cannon Slayton Snowball Moon, Fran Cannon Slayton When the Whistle Blows, MRI, MRI Results, Scanxiety

Bottom Line: MRI Results Are Great! The short version: the MRI last week showed that there is no new visible growth of the tumor. Hooray! The long version is slightly more complicated. It took a day longer to get to that result than I expected. Expectations are often such impediments to the happiness of the moment. If I could better let go of my expectations I think I would be happier as I deal with what is actually happening. I was told that I would get the MRI in the morning, the radiologist would read it, and we’d have the […]

Driving, Feeling Better & MRI Tomorrow

Aug 15, 201618 CommentsUncategorized

Well, it has been awhile since I posted last. It’s because, as of July 17th, I’ve been allowed to drive again! Oddly enough, I wasn’t biting at the bit to get back at it. The break, while often majorly inconvenient, also had its own special, slow-downy charm about it. In many ways, not being able to drive was very relaxing. But at other times I felt a bit like a hostage in my own house. I may have mentioned this before, but the technical, mechanical aspect of driving came back the moment I sat back down behind the wheel. It […]

Independence

Jul 5, 20166 CommentsUncategorized

Happy Independence Day, a day late, from someone who is still pretty dang dependent on others. But that is changing, slowly. Last week I went to see my oncologist to ask him to reduce my seizure medication (which I’d already reduced without permission – I am a bad patient, or bad at patience, or both!). After a good-natured but well-deserved scolding in which he reminded me that he needs to know exactly how much medicine I am taking at all times in case I happen to have a seizure, my awesome oncologist actually reduced my seizure medication even more! I […]

Ups and Downs

Jun 23, 20166 CommentsInfection, Keppra, Losing Weight on Steroids, Oncologist Visits, Reducing Steroids, Seizures and Brain Tumors, Side Effects of Medications, Steroids, Tapering SteroidsSide Effects of Medications

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 […]

Kidney Ultrasound: The End of a Difficult Week

Jun 6, 201612 CommentsInfection, Kidney ultrasound, Mammogram, Ultrasound, Urinary Tract Infection, UTIHydrocortisone, Kidney Ultrasound, Mammogram, Scanxiety

Let me just say this: Last week was pretty stressful. I’m glad it’s over. Up until now I’ve been pretty good about keeping perspective. But I readily admit: last week challenged me. With a lingering UTI, a callback ultrasound after my mammogram, and a kidney ultrasound, it was a bit much. I felt sick. I was stressed. I struggled to maintain as much positivity in my life as possible. It was pretty hard. Kidney ultrasound: Rough process. I had my kidney ultrasound on Thursday. It was a rough process. Not the ultrasound itself – that was easy. And painless. The […]