Posts by Ellen Harris-Braun

England was lovely!  Here's more about the trip if you're interested. I've been back a few weeks now and they have been less energetic than my time in England, for sure.  I did a decent amount of walking on the trip (along with a LOT of riding the wonderful Tube) but in the last week or so my left foot has gotten more numb and more hurty and it's hard to walk very far, especially with my left knee also continuing to hurt some about half the time.

To continue with the complaints, my headache is worse in the morning and then most days goes mostly away; some days it sticks around.  I recently started taking Cymbalta for general pain (it's an antidepressant but also used to treat, for example, fibromyalgia or chronic back pain) but I'm not sure if it's doing anything yet.  I hope it will.  May have to increase the dose.  I have started going to a pain-management practice.  They prescribed a compounded pain cream that has various things in it including neurontin.  Not sure if that works or not yet--just picked it up yesterday after lots of insurance hassles over it (mostly handled by Eric).

Voice update: My vocal-cord damage is slowly getting a bit better, which is nice, thanks to vocal-cord therapy and tincture of time. Sometimes my voice sounds almost normal.  Sometimes, especially at the end of a talky day, it is all hoarse and breathy and can't get loud.  Shortness of breath, which started at the same time as the voice problems, is only a bit better.  But I had lung-function tests yesterday which showed reasonably normal lung function in terms of lung volume, etc.  So the shortness of breath is not that my lungs aren't working ok.  I guess it's more that I'm not quite using them well enough (my diaphragm isn't doing what it should be?).  However, even a bit better is noticeable.

I had chemo yesterday and last week--we're continuing with the Eribulin, giving it the benefit of the doubt, until I get my lungs scanned at the beginning of November to see what those "spots" are up to.  By then I'll also have had my next brain MRI (October 26) so we'll know if anything is going on in there too.

And that's the end of the health update I guess!

Well. My September 11 chest CT scan showed “multiple” very small nodules in both lungs.  Some looked like they could be due to inflammation/infection, and the radiologist noted that the largest one–only 4 millimeters–was most suspicious for metastasis.

So this is a new chapter, I guess.  Not one I am eager to read.

I am at risk of lung infection because of being on steroids for so long, so the first step was to rule that out. I went to a pulmonologist Thursday who said it didn’t look like I had an infection, but the nodules were so small he couldn’t reliably test for bacteria or fungus (by doing a “wash” of my lungs).  He said he saw 5 or 6 “spots,” but maybe there were smaller ones he didn’t notice.  So, let him know if I get sick, and come back in a few weeks for follow-up.

Earlier in the week we had delayed chemo in case I did have an infection, but now chemo is on again–for now–right after I get back from England (where I’m going Sunday to Sunday with my mom and Spee).  If this is the cancer spreading, then the Eribulin (chemo drug) is no longer working and we need a new chemo plan.  But right now we’re in sort of limbo–we don’t know that the spots are mets–and the original mets (in lung and sternum) are still cooperatively not growing at all (meaning the chemo is working on them).  Meanwhile all the other CT scan results were negative and reassuring, as was the bone scan (meaning the chemo is likely working in other parts of my body still).

I’m guessing I’ll have a quick-interval follow-up CT scan in mid-October to see what’s happening, and if a nodule has grown big enough to biopsy laparoscopically, we’ll do that.  Or something.  Overall, even though we will be in limbo for maybe the next whole month, I’m most likely looking at a switch to a new chemotherapy and a new stage of this living-with-cancer journey.  The trail has stuck to the ridge line of no-progression so far, but it seems to be dipping down the slope.

Since Eribulin has been so easy to tolerate (and even quick to administer), I’m scared that a different chemo regimen will decrease my quality of life at a time when I am still dealing with headache, leg pain, back pain, leg weakness, fatigue, blah blah blah.  I don’t really feel up for 3 days of feeling icky or nauseated per three-week cycle on top of all that!

There are more updates, and more thoughts and plans for the near future, but I will save them for another post another time.

We’ve explained to the kids what’s going on, and that we won’t know for sure for a while, but that this is not good news.  Today with Jess’ agreement I gave them the whole background of the cancer situation I’m in–from 1995 to now, since Jess asked about way back then as well.  Before now, Jess has explicitly not wanted to know many details, but that left them making up their own more-scary story with no one to talk to about it.  Now Jess should have a better idea of the way things are, I hope, rather than just “my mom is dying of cancer” which doesn’t really represent the complexity or timeline-uncertainty of the situation.

We talked about the different meanings and weights of “dying of cancer,” “has terminal cancer,” “is living with cancer,” “has incurable cancer.”  We talked about what situation would fit the description “dying of cancer.”  And we talked about how most of the things that are visibly making me no longer healthy and strong are not the cancer and are not going to kill me.  It was a really good conversation.  Although I did the majority of the talking, Jess asked lots of questions.  We talked about how this all made us feel a little bit, too.  Not much, but…a start.  And there was much cuddling.

And now, to the important stuff: I must go pack!

I had m periodic CT scans last Friday and a bone scan too, warranted by my back muscle spasms I guess, and we meet with my oncologist tomorrow afternoon to find out the results.  The Sunday after that I go to England for 8 days.  That’s not very long to make a new plan if the chemo has stopped working.

Meanwhile I had vocal therapy today to work on my partially-paralyzed left vocal cord.  I’m getting better, slowly.  Tomorrow, an ENT follow-up appointment before the oncologist, and if all goes well, chemo too.

Trying to deal with various pains and aches these last few months, I have accumulated a wide variety of what I think of, in more humorous moments, as “cancer-lifestyle accessories”–all kinds of things people give you or you acquire because maybe they will soothe an ache or prevent a pain or cushion your knee or keep a headache at bay.  Or keep you from coughing at night, or help your numb foot, or cover your head, or…the list goes on and the stuff keeps accumulating.  Some of it works out and becomes (temporarily?) critical to day-to-day life.  Some things you try and they just aren’t the right thing.  Some things I happily don’t need now though I have dozens: hats and scarves.

Some good stuff I depend on right now–accessories that would be sold along with me if I were Cancer-Lifestyle Barbie:

• Numerous **pillows** in various shapes and sizes, including an inflatable one for travel and one flattish one to put behind my back in the car to make the car seat less curvy, oh and the one I carry around to cushion my hurting knee when I sit down.
• **Sunglasses**.  To keep the light out of my eyes because that triggers the headache.
• **Sun hat**.  Ditto.  Below is a picture of Jess in my hat.
• **Biofreeze Ge**l!  It's active ingredient is menthol and you rub it on what hurts you.  In my case, my back mostly, but also my forehead and temples and back of my neck for headache; my shoulders, my knee, and sometimes my new sore spots on my foot.  It is freezing and it basically drowns out the pain signals with tingly cold signals for 30 min to an hour.  My friend Anne is a master at putting it on my back for a good long freeze!  And the most accessorized part is this: I now have it in gel, and a spray (good for applying it to your own back in the middle of the night), and I have a different brand that rolls on (good for taking everywhere because you don't have to wash it off your hands afterwards and with it I can reach most of the parts of my back that hurt).  And now I even have some in a big pump bottle...things are getting seriously Biofreeze-dependent around here.
• **Gel heel protector** for my new neuropathy sore spots--not sure this is helping a lot but it makes sense to cushion that area.  It slips on to my foot and just adds a little squish layer under my sock.
• **Cloth sleep mask**--useful for when the sun comes in the window in the morning and gives me a headache before I even wake up.  Even more useful for when I have to lie face-up in a bright procedure room for a CT scan or whatever and stare up at fluorescent lights.
• **Port protector:** This one is hard to describe.  I have a medication port just below my right collarbone, and it sticks out.  Passenger-side seatbelts rub against it sometimes.  A nurse at the chemo room gave me a neat little invention that a quilter relative of a fellow port-user made: it's a disk of foam with a hole in the middle for the port, and on the top surface a strap that attaches it to the seatbelt. So you put in on the seatbelt and position it over the port and it cushions and protects the port.  And it happens to be...purple!  This would be a great present for anyone with a new and irritating port, but I can't find the good kind online.
• **7-day pill organizers** that *constantly* need to be reloaded!
• **Smartphone** w**ith lots of alarms** for medication times: It is constantly telling me it's time to go take something.  Very needy and demanding.
• **Pedometer** on my smartphone: I set a goal and at least I know whether I reached it or not every day.  Some days I can, some days I can't, but it motivates me to see it adding up.

Jess in my hat

A friend of mine just wrote me: “Having cancer is a full-time job, and one with lousy hours, benefits, and working conditions, isn’t it? And you can’t quit."

Love that.

The last 10 days have been better for the headaches–I’m still wearing sunglasses and closing the windowshades most of the time, but having more edge of headache or threat of headache than actual headache.  Still not great, still taking a pretty high dose of steroids, and not trying to taper down yet because I don’t think I can take any more headache than I’ve got right now.  So I feel kind of stuck.

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, Jess, and Jess’ friend Elliot, 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 Jess’ sweetie Elliot, 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