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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.)

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.

Barn Swallow

I really enjoyed this column by Oliver Sacks in the NYT.

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!

If your interest in this blog extends to our July 2015 family trip to France, you can read about it and see pictures here.

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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!

In the Boston airport with Eric, Will, Jesse, and Jesse’s friend Lydia, waiting for our plane to Paris.  Then train to Aix-en-Provence.  I have a bit more energy this week, it seems, and chemo yesterday didn’t slow me down.  This should be a fun trip.  Though I’m sure by the time we get to where we are staying tomorrow afternoon, I will be BEAT!

However, we are staying only ten minutes’ walk from a famous chocolatier.  More later!

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.

My old-fashioned paper chart at Radiation Oncology…weighing down my favorite nurse!

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!

For the last two weeks, because of my knee pain and a weird new cough triggered by my standard sleeping position, I have had to figure out a new way to sleep (or be woken up every 60-90 minutes…not fun).  So suddenly I am a person who needs: a pillow to put under my knee when I ride in the car or sit in a seat for a long time, a person who needs a full-sized pillow in the car to lean on when she is tired on drives, plus a person who needs, as far as I can figure, the ridiculous amount of 5 pillows to sleep at night. Maybe 6.  (“Slut!” says Eric at hearing six)

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.

Argh, so frustrating to need to Rest Up explicitly in a day before tackling a task or event I want to bring even a modicum of energy to–it feels like I am an old laptop with a failing battery that has to be charged up in a pre-planned way.  It’s also hard to remember that this level of fatigue is temporary (due to the SRS last week) and I will rise out of it eventually.

This morning after sleeping in, I sat on our porch surrounded by the beautiful, damp bright-green view I am lucky enough to have, of trees, grasses, wildflowers of late spring, darting swallows, sparrows, starlings…people moving around the land with more energy than I have…we drank our tea and I soaked it all in.  Ahhh.

I found Not Enough anticipatory-guidance style info online for this stereotactic radiosurgery experience from the patient perspective--so here are some photos that may be useful for someone to run across someday.

Sitting here just finishing up the first dose of cycle 23 of chemo, with awesomely normal liver enzymes, decent red-blood-cell count & white-blood-cell count, everything else all good.  Now we’ll stop by the food coop and go home and I will rest some, because last week’s three afternoons of zapping gave me a lot to recover from.

There is a small possible-mini-seizure story to be told from the weekend, which of course means more appointments for me, and no driving until we figure it out, and continued gooney drugs (anti-seizure prophylaxis) way longer than planned, which is unfortunate because I don’t like feeling drunk and a bit unstable on my feet. And also I can’t drive if I’m going to be at risk for seizures.  But it might have just been dehydration, or–my hypothesis–a 90-second seizure secondary to brain disturbance from the SRS plus dehydration/heat/electrolyte imbalance, not to be repeated because it was due to treatment & post-treatment effects, which are temporary! Meanwhile I have other things to follow up on this month–the DVT, the knee pain, my usual 3-month CT scan–which felt a bit overwhelming even before the need for a neurological consult…

In other news, I got approved for disability payments from Social Security in what seems like record time (possibly related to all the records I sent them as instructed…) so at least now my feeling of having too much medical “work” to do is matched by the government’s agreement that I can’t do regular work!  I am disabled by my appointments more than by my disease at this point.  Who knew?

And now “spa time” in the infusion room is over and it’s off to the coop.  Soon I’ll post some pictures from last week’s SRS adventure.

This afternoon is the first of my brain zaps for very small tumors.  The radiation oncologist wants to do them one at a time over three days, so we will be at Albany Med Tuesday through Friday, every afternoon.  Argh!  It’s like a job…but with mind-altering drugs (Ativan, Keppra).

An implantable microdevice to perform high-throughput in vivo drug sensitivity testing in tumors

All went well at chemo today–liver enzymes blazingly normal.  For random reasons, I was in and out of there in record time–70 minutes from the front desk to out the front door again.  Cycle 22 completed!  Now I feel a usual amount of icky but will feel better tomorrow.

My liver enzymes went back to normal yesterday so I got chemo–we’re calling it day 1 of cycle 22 with a skipped dose on day 8 of cycle 21.  Last week was my unplanned week off of chemo–last Tuesday my enzymes were still too high for the oncologist to be comfortable, so no chemo, and instead, a visit to the liver specialist upstairs at Albany Med later in the week.

That was a reassuring consult, because my enzyme elevations were called “mild” in the liver-disease context, and the blood testing has ruled out any disease causing the elevations (hepatitis, etc.).  The fellow working with the specialist told me liver metastases don’t raise the enzyme counts (confirming something I had already heard from someone else but wasn’t sure about).  And the specialist ended up talking to my oncologist and reassuring him that I could still get chemo with mild enzyme elevations if the chemo was of benefit–it was unlikely to damage my liver.  So!  All that is good.  Even though we still don’t know what caused the late-April ALT/AST elevations–if not Sudafed plus everything else.  They even tested my Epstein-Barr Virus titer and it didn’t show anything active.  The liver specialist thinks it could have been the chemo drug itself, since that happened to 18% of takers in one trial, but on the other hand, I’m on month 16 of the same drug and it hasn’t had that effect on me.  So.  Water under the bridge–I hope so.  And if that same water cycles by again, we can desist from freaking about about it so much.  Thank you, liver specialist!

I suggested my oncologist take a deep breath and let the liver thing go now, but he said “I don’t take deep breaths.  I’m just going to worry about next week’s enzyme levels.”  Well, I’m not (much).

Meanwhile I have sent in my paperwork for disability (and eventual Medicare if I want).  That was a lot of work.  Since the DVT I have felt honestly more disabled by my situation, though it’s often disability-via-too-many-appointments rather than disability-via-physical-inability.  Though I’ve got some of that too.  I am trying to return to two walks a day, but they are shorter and leave me tired.  I’m also trying to stick to doing my 30-minute PT routine once a day, and ideally do some qi gong once a day as well.  That’s a lot!  (I do it with the help of my neighbors here at QIVC, who join in with me and encourage me and provide interesting conversation.)  And that routine is not something I’m holding myself to on days like today, post-chemo, post-bone-medicine-that-causes-flu-like-symptoms, and post-IV-vitamin-C treatment (feels like ick also).  I took the 2 shorter walks but I don’t think PT or qi gong is going to happen: I am tucked in bed with my head feeling like bleh.

Despite feeling icky today I was lucky enough to enjoy a delicious lunch at my friend Gina’s house…so lucky to have a friend who loves to cook and share!  I cannot describe how good that quiche or related eggy thing tasted…ahhhh.

So, curb cuts.  Here is how I’m living a slightly different version of life now.  When crossing the street in Chatham or Albany, I go for the curb cuts.  It now apparently matters, to an unconscious part of me that directs my feet, whether I have to pick up my leading foot that extra 4" or so, or whether there is a nice slope for that interim step between street and sidewalk.  Conserve energy!  I guess that’s what I am doing.  I just noticed this a week or so ago.

Next week ideally will be chemo again on Tuesday, then various brain-zap set-up appointments Wednesday and Thursday.  Same for Tuesday the next week, then zapping on Wednesday the 27th.  So that’s the plan!  More later on the metastasis spreadsheet, which I actually pulled off, and shared with my oncologist and radiation oncologist.  Next: conquer the world with it (the world of radiology at least).

Blog posts will now be announced on Twitter for the convenience of those of you who use it.  I’m @eharrisbraun and I have only ever posted exactly ONE Tweet.

The new look of the blog was forced upon me today by Eric upgrading our WordPress–the 2006 blog theme was no longer available.  Hope you like the new fancier stylings.

OK, just to catch up, before I retreat into watching a dumb movie:

The week after the zap I felt pretty good, all in all, despite having four sore bumps on my head.  Eric left for Ecuador to see his parents and my mom arrived shortly thereafter (she picked up our car at the airport).  We, meaning I, had lots of appointments of various sorts pretty much all week (Jesse had a few in there too just to make things interesting).  So she drove me around a lot.  I got very tired and a bit headachy on Tuesday and stayed that way until Saturday, when I realized I had gotten a cold.  Sinus headaches. All week I conserved my energy and did my PT (30 minutes twice a day, or once if I went for a longer walk), walked, and sat on the sofa.  It was rainy and cold so we had fires in the masonry heater.  On Saturday we sprang into stop-motion action and accomplished a lot of household to-dos, separately and together, that were very gratifying.  On Sunday my mom left and on Monday Eric came home.  I’ve had a bit more energy since then.

Tuesday we went for chemo but my liver enzymes were elevated–not just a bit above normal but too high for chemo.  Was it the 3 Sudafed tablets I took over the weekend? On top of everything else I am taking? Who knows.  No one knows yet, but the plan was to come back Friday to try again.  So this morning off we went, but my liver enzymes were even higher: over 3 times normal.  That’s actually getting clinically relevant: my liver is showing some stress.  So now I try again on Tuesday.  I’m not sure whether that will be the second dose of cycle 21, or the first dose of cycle 22 after a truncated cycle 21.

Of course either way my chemo schedule is now awry, which means my May zap might need to be rescheduled by a week, but that would be 7 weeks of tiny-tumor growth, when the radiation oncologist was happy with either 4 or 6.  Hmmm.  I guess we could move it forward to 5 weeks.

And meanwhile we’re trying to plan a trip to France in late June that ideally will play nicely with my chemo schedule, which is…um…apparently never to be trusted.  And Southwest, the airline of sick people (changeable tickets!), does not fly to France. :(  Of course in the end 10 days or so in France is worth skipping a week of chemo, mais oui bien sûr, but I’d rather not be gone for what would be two treatment weeks instead of one week being an off week.  Chemo geek…yes.

I find this all very frustrating and a big bummer.  Of course, behind all that is the worry that the liver enzymes are the first sign of liver metastasis.  So far the cancer has hit 3 of the 4 most popular triple-negative breast cancer metastasis sites (lung, brain, bone) and guess what the other one is?

Meanwhile, in cancer-care technology, Eric got the radiology department to send him, overnight, on CDs, every CT scan I’ve ever had, apparently, because we want to try to 3-D print the mysterious lung met to see if a physical representation of it will help dispel the confusion around whether it’s a breast-cancer metastasis or a primary lung cancer (insert standard snorts of laughter at the implausibility of this here).  And why not? Open-source software out there will help Eric (and Will, whose 3-D printer it is) convert the DICOM files from Albany Med into some other format and somehow help them figure out what to print and what not to print. I look forward to seeing how this process unfolds.

Looking at the chart

And also in technology, we pointed out to my oncologist a few weeks ago that there is now so much history of metastases in my brain that the radiologists who read the MRIs and write the reports can’t keep it all straight.  They are going from the previous written report, and the narrative format means they miss things.  For example instead of following up on a previously-seen “spot,” they forget to check for it at all.  Or they call a spot “consistent with previously treated lesion” when it’s a new one, not a previously treated one.  So we said there should be a chart or a spreadsheet.  And he said, “You’re right, I’ll make one.”  And when he was on vacation, he did!  A sort of a chronological list with dates and locations and sizes without all the narrative hiding the facts.

So I took that and we are making an even more useful spreadsheet, so each met can be followed from discovery to ZAP and beyond (as it shrinks away).  So much fun, this cancer thing!