A hard few weeks

First of all, on paper I’m doing great.  Cancer under control still, chemo still working, few chemo side effects.  May’s brain zapping showing good results (tumor shrinkage), nothing previously treated growing bigger, nothing new popping up in there in the meantime.

But in my actual life I can’t get rid of the medium-bad headache that comes whenever I try to taper off the post-zapping steroids.  Usually I’m off them in 3 weeks and it’s been over 2 months since the last zap.  (And I was on a maintenance dose of steroids from the previous mid-April zap until end of May, so it’s been…3 and a half months on steroids).  I keep getting down to a very low dose of steroids, then get the persistent photosensitive headaches, then if I don’t increase the steroid dose again I start to throw up and feel REALLY bad after a few days and not only have to wear sunglasses until 9:30 at night but also stay in my bedroom with the shades drawn all day and avoid screens, books with too much light shining on the pages, etc.  And I don’t have any appetite.

Not fun. Maybe my latest steroid regime will work better though.  Got it planned out yesterday and today was definitely a better day.  I even cooked for an hour for dinner!  But it seems like when it’s gotten bad, it then takes a long time to get back to an even keel where a dose that should work does work.

I think at this point since there’s no swelling in my brain (the main reason I would have a headache that goes away on steroids) I probably have this:

glucocorticoid-withdrawal syndrome has occurred upon withdrawal of corticosteroids but was not related to adrenal insufficiency. Patients experienced anorexia, nausea, vomiting, lethargy, headache, fever, arthralgias, myalgias and postural hypotension. Symptoms resolved when corticosteroid therapy was reinstated.

Happens when people have been on steroids over a certain dose for over 2 months.  I have fluctuated around that certain dose. Treatment is the same…treat the symptoms with steroids, then slowly, maybe even more slowly, taper off.

So the last 2 weeks have been a taste, for me and everybody, of me being pretty much an invalid. Too tired and short of breath to walk anywhere, too headachy to go outside until dusk without a good reason, hiding in my room and being pretty miserable the whole day long.  Too headachy to tackle any work beyond little tasks and responses and paying the bills.  Waking up with a headache already at 6 am.  I have found that frankincense essential oil on the temples and back of the neck might help the headache a little (thank you, Marcy!) and also that slathering Biofreeze, my menthol gel that I put on my knee all the time for pain, on my jaw muscles, temples, and forehead, and my neck and shoulders sometimes too, helps the headache recede a little as well.

OK boy enough rough-week update for now!  But that should explain why I haven’t posted much for a while.

Here is a picture of one of my favorite birds–a barn swallow.  They come to play with us and raise their babies from June to late August or early September, then they go away again.  It has not been such a great summer for fireflies on the hillside below my bedroom window, but we have had lots of swallows on the Land and around our house, swooping and chasing each other and cornering the sides of our house as they go for insects too small for us to see.

Barn Swallow
Barn Swallow

2 thoughts on “A hard few weeks

  1. Shelly

    There must be SOME balance between steroids and no steroids! It must be exhausting and depressing to know your health is looking okay (well, relatively speaking, of course) on paper and not be able to enjoy your days. I hope you find a way to get rid of this steroid-withdrawal effect and feel better!

  2. Gina Qualliotine

    I wish my whole battened
    heart were a property
    like this, with swallows
    in every room – so at ease

    they twitter and preen
    from the picture frames
    like an audience of the gods
    before an opera

    and in the mornings
    wheel above my bed
    in a mockery of pity
    before winging it

    up the stairwell
    to stream out into light

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