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 […]

Celebrating Feeling “Okay!”

Too Much Doom and Gloom Lately:  So Let’s Celebrate Feeling “Okay!” I felt okay all day yesterday!  And I’ve felt okay all day so far today!   YEAH BUDDY!!! We know how to celebrate around here. Meeting with Oncologist Tomorrow… Tomorrow (Wednesday) is my first three month follow up appointment with my oncologist.  As I mentioned a couple of days ago, one hugely positive byproduct of having to go to the emergency room last week was a “sneak peek” CT scan showing that there was no edema and no tumor regrowth.  I imagine we’ll hear more specific details tomorrow, but […]

Happy Mother’s Day!

I’m the tall one, in case you couldn’t tell! Being this girl’s mom is the best thing that’s ever happened to me. I thank God for her everyday. This Mother’s Day we all went out with Mom and Dad to brunch.  Towards the end of our meal I had another little episode of feeling bad.  My muscles felt like they were going rigid, especially in my stomach and face. It was difficult to smile – my cheek muscles became very weak.  We went home and I crawled into bed and slept for several hours. I still felt tired when I […]

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 […]

Another Trip to the Emergency Room this Morning

An Unexpected Twist on My Unexpected Journey. Woke up feeling bad – faint with muscles twitching.  Very similar to when I first went into the emergency room when I was diagnosed.  Scary. Marshall took me to UVA ER.  Possible seizure.  CT scan shows no brain bleed, which is good news. Most labs are normal. It’s 12:50 pm and we are still at the ER. I’m not feeling as bad as this morning, but not feeling very good either.  Please keep me in your thoughts and prayers.

My First Birthday With Brain Cancer

April 20th was my birthday! I turned 49.  I don’t know if all people who have cancer feel this way, but I was certainly happy to be able to celebrate another birthday this year.  But I have to admit, it did make me look at the day a little more wistfully, a little more philosophically, than usual. I appreciate the opportunity to get older. I have always abhorred TV commercials and magazine advertisements that play to women who have been told their whole lives (by similar commercials and ads) that they need to look young forever.  This is utter horse […]

Cruising with Cancer on the Disney Fantasy

It was really great to get out of the house! Wow, was it ever good to get out of the house, to get out of the “recovering from cancer routine” at home, and to get out of my comfort zone a bit!  The whole family needed a vacation after all that has happened since my diagnosis in January.  It was great to just leave it all behind for awhile. The ship was just beautiful! And the weather (for the most part) and scenery were terrific. And there were lots of great things to do, like go on a semi-submarine ride […]

Cleared for Vacation!

Before I was diagnosed with brain cancer, our family had planned a Disney Cruise vacation.  Before my surgery, my doctors told me I’d need chemo and radiation so we thought we’d have to cancel our cruise. But with all the good news following  my surgery, the doctors have said I can go! We were planning to drive to Port Canaveral to make the trip cheaper (the Cruise itself was “free” since we are Disney Vacation Club members, thanks to a gift many years ago from my parents) but now the drive would be pretty difficult for me, so yesterday we […]

An Invitation to Join “The Society”

Join The Society! In my book, When the Whistle Blows, Jimmy learns about The Society, an organization started by his great-grandfather, Patrick Fineas O’Cannon.  Members of The Society promise to do kind deeds for others – sometimes total strangers – in order to honor family and friends who have passed away, and for whom they can no longer do kind deeds. I’ve decided to start The Society from When the Whistle Blows in real life. Every so often – maybe once or twice a month – I am going to offer an opportunity here on my blog for those who wish to become […]

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