A few weeks ago my good friend Birdie sent us Atul Gawande’s latest book, Being Mortal.  It took us a while to read it but WOW.  I think everyone should read it.  Especially if you fall into one of these two categories:

• You have aging parents and are helping them navigate the years of their lives when their capacities are waning and living independently is getting more difficult (the first half of the book addresses our culture’s approach to care of the old)
• You or someone you are close to is dealing with a terminal illness and you are interested in learning more about how our medical culture approaches treatment options, information-sharing, and decision-making (especially for people with cancer).  (The second half of the book addresses doctors’ beliefs that “I don’t have anything else to offer” but continued treatment beyond the point that it is effective, and explores what else there is to offer if we look beyond the usual boundaries of curative medicine.)

Here’s the New York Times review, which tells a bit more about the author’s journey through these issues.  It’s a book powered more by stories than by studies–very readable, and full of insights that I found really important.

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.
http://www.drugs.com/sfx/prednisone-side-effects.html

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.

I got a surprise call from my favorite nurse in Radiation Oncology yesterday (Tuesday), leaving me a message about my Monday MRI. I thought I would have to wait untold weeks and weeks to find out about the results, since I don’t have an appointment with anyone until next week (the neurologist) or the week after (chemo Day 1).  Of course I wasn’t going to patiently wait that long, not being a good “patient,” but here was Joanne leaving me a message that went like this: “Dr. Chandra looked at your MRI and it looks good.  Everything is either stable or smaller. Give me a call, I want to talk to you in person.”

So that was a really nice message to get yesterday afternoon, for sure.  Especially because what with the continuing headache, which is dogging me as I taper off the dexamethasone finally, I was wondering if maybe I had, unexpectedly, a new crop of 12 mets or a re-growth of the original biggest one with lots of associated swelling.  But no. Nothing to explain the continuing headache, and unfortunately the headache seems worse now that I’m on the last week of the latest taper–1 mg dexamethasone per day.  I think from my experimenting with splitting up the larger doses (like 4 mg per day taken as 2mg in the AM, 1 mg at 1 PM, 1 mg at 7 pm), 1 mg is effective at keeping away the headache but not at making it stop.  So taking 1 mg when I wake up in the morning doesn’t seem to do anything.

But the only way to get my own adrenal glands to re-start making enough corticosteroids (? haven’t read up on this again lately) is to not ingest exogenous steroids.  Thus the taper.  I have been on some level of dexamethasone (Decadron, steroid) since my brain zap in mid-April.  It’s time to get off them!  But having a headache a lot of the time really sucks.  Even if it is not a really bad headache–sometimes more of a nagging one. This morning, more of a real headache.

Anyway, off to call Joanne!

OK France was really fun.  But today I am too tired to do a good post about it with beautiful pictures to make you jealous of my life, etc. We fit the 13-day trip in around my usual chemo schedule so I had chemo the day before we left, and this morning (we arrived home at 12:30 am today).  After chemo I had an afternoon appointment with an ENT (ear/nose/throat) doctor to check out my various throat-related symptoms I’ve been experiencing and complaining about since mid-June–the stuff diagnosed preliminarily as GERD due to continued steroid use.

I really liked the guy, despite the fact that he stuck a camera up my nose and down my throat to take a video of my vocal cords, etc.  It was fun to see the video and have him explain what he saw.  Which was: left vocal cord weakness and related dysfunction of epiglottis, etc. caused by damage to a motor branch of the vagus nerve that controls that stuff.  This explains my weird cough, not being able to close my throat completely (like when popping ears on an airplane), my hoarseness, my lack of voice projection/loudness, my more frequent coughing while drinking and coughing when laughing, and my shortness of breath also–even though that seems like a lot.

The treatment: speech & swallow therapy.  Can’t get an appointment with the speech therapist guy the ENT works with until August 11 though (bummer).  Also, it has all gotten a bit less acute, so maybe it will just continue to get better on its own some more.

The cause: unknown.  Maybe chemo…chemo damages nerves.  Maybe the brain-zapping…somehow indirectly (I’ve never been zapped very near this nerve).  The swelling from brain-zapping?

More on France tomorrow or soon!

Last Friday’s 3-month CT scans (chest, abdomen, pelvis) showed nothing new or worrisome–stable mets, so Eribulin still working!  That was really good news especially since I was wondering about the cough and shortness of breath.

Chemo was easy this week.  My sister Deb is visiting and being my driver plus major household helper and cooking some, too!  Wow.

The weird cough and hoarseness and shortness of breath make various professionals think I have GERD from the steroids (gastroesophogeal reflux disease) even without typical GERD symptoms (acid reflux feeling, indigestion, heartburn).  So I switched to a different proton-pump inhibitor to protect me better from the steroids and we’ll see.  I also have an appointment with an ENT specialist to look for nerve issues (caused by GERD?) in the area of my throat that is affected–but not until after our trip to France (July 1-13).

Today’s appointment with the neurologist was good–we liked her, she spent lots of time trying to figure out my complicated situation, she listened, and she came up with good small changes to my meds to address my post-SRS headache issue and maybe improve my knee and other pain.  Most excellently, she is not convinced that my little episode on May 30 was a seizure.  Maybe more like an almost-faint. We will get an EEG in the next month or so which will probably show a non-electrically-disorganized brain…then it looks like I’ll be able to drive again, probably.  My next brain MRI is July 21.  She thinks the trouble I’ve had recovering after this zap may just be the result of having had so many zaps…it gets harder to bounce back.  She does not think I need to be on Keppra (anti-seizure med) “forever” though we’re sticking with it for now.

So that was the news this week.  I do believe I have No Other Medical Appointments until next Tuesday’s chemo, and the day after that, all the Harris-Brauns, plus Jesse’s sweetie Lydia, are off to Aix-en-Provence for some summer living in France!

I am getting bored with how much I think about/talk about/update people about what’s going on with my annoyingly imperfectly-functioning body.  It just begins to sound really dull and repetitive to me…and must eventually to others as well!  I am certainly better at talking about, or just more willing to talk about, the physical goings-on than my mental or emotional or psychological goings-on, which are probably of more interest overall to others.  But when I’m with other people I really don’t want my cancer life to dominate the conversation–it’s so much less interesting overall than other topics!

But it’s not just about my interactions with other people; I am getting a bit fed up with how much of my own attention my body currently requires.  I wake up feeling not so good; or I can’t fall asleep because various things hurt or feel weird; I then start to investigate whether this is just tiredness from not enough sleep, post-chemo ick, post-radiation fatigue still dogging me, or did I do too much with all that going on yesterday and now I’m paying a body price?  Or is something new going on that I need to pay attention to, some new symptom or side effect that needs to be reported on, treated, prevented, ameliorated?  Whoof! it’s kind of tiresome.  It’s another way in which cancer is taking up so much of my life–not a way I anticipated.