Posts by Ellen Harris-Braun

Last week's round of imaging to see what's what

****Last week's 3 CT scans showed some response to the new (since-December) chemo combo in my chest/abdomen/pelvis: very good news, though not all the new mets are gone.  Some are just unchanged or smaller.

My various brain/spine MRIs showed leptomeningeal effects still in the central nervous system but nothing worse than late January when we started the intrathecal Methotrexate twice a week.  My MRIs showed a variety of effects in the brain, always so hard to puzzle out because so much has occurred in there over the last 2-3 years, but nothing too alarming.

Brief update

Chemo vs. scans to see what’s been accomplished inside of me :)

I also have 3 cranio-sacral therapy appointments set up for March to work on my spinal cord and brain from a different angle.  Back when I made the appointments in early February, before starting I didn’t really know whether I would still be around for them.

Ups and downs

The last few days have been frustrating because just as I felt like I was getting substantially better in the strength and muscle department,  I lost some of it somehow. My thighs were no longer able to get me to a standing position without pushing with my arms, and my knees kept wobbling out on me unexpectedly. I was back to 2 feet on each stair instead of 1 foot per stair.   And on Saturday my vision got weird – my left eye is a little out of sync.

Meanwhile, my voice seems to have gotten weaker and more ragged. Last night when we went to a Buxton event, no one could hear me talking unless I really pushed my voice hard.   And just sitting and talking seems to wear me out more now than it did before–or maybe I’m just noticing it more and taking care of myself better.

I am less sturdy on my feet again and needing help with dizzy spells and sometimes getting up and down. Which sucks, because I really was climbing out of that place for the last few weeks.

On the bright side, though, both Will and Jess are home for spring break now so our house is full. And my friend Leigh is coming today to visit for a few days!   I hope I don’t have to spend too much of that time resting.

Vanities: smarts

(Part four of four musings on vanity’s role in my life.)  Finally we come to my final vanity: Vanity about smarts.

I have always considered myself a smart person.  Besides this, I have had to navigate in the medical world,  specifically the world of breast cancer, on and off since 1995.   Before my diagnosis of metastatic cancer in November 2013, I had been in graduate school for midwifery for a while – wondering if some courses, like pharmacology, were ever going to really come in handy in my life as a homebirth midwife.   The midwifery program involved a lot of researching studies, learning how to critique them, and understanding the value and limits of statistics. So when I had to switch my focus from midwifery to cancer, it turned out that all of this grad school stuff was hugely useful.

It is important to me to keep track of new studies that might be relevant to my case, which makes a lot of sense because we might find something useful that way. But for me it’s also about showing my doctors that I am comfortable in their world and using their language and jargon.  When I meet a new doctor,  it doesn’t take long for me to use a big medical word or otherwise indicate that I have some medical background;  I can see people changing how they talk to me after that.  I seek out doctors who like to teach; that means they are open to questions and being questioned, and will be patient with my need to go deeper into explanations and probably a lot of patients want.

Two things made me notice this vanity of mine about smarts: last summer, faced with a variety of weird symptoms that started all at once, I figured out that it was related to the vagus nerve. My oncologist and others gave me other explanations, but they didn’t make as much sense to me based on what I knew about the vagus nerve and what had happened in my body.   Eventually I went to an ear, nose, and throat specialist  who put a camera down my nose and looked at my vocal cords. Based on what he saw and what I told him about my symptoms, he confirmed that the vagus nerve had caused the problems. I was probably the only patient he saw that month who high-fived her husband upon being told she had vagus-nerve damage.   But I was so pleased with myself! I had figured it out with my knowledge of anatomy and physiology and my careful observation of my own symptoms.

Then later in the year I got pneumonia. One day I felt really rotten and short of breath without knowing what was wrong; the next day, when I went to chemo, I insisted that they checked my oxygenation level even though they don’t usually do that along with blood pressure and temperature.   The number that the pulse-ox machine showed  got me a quick ticket to the emergency department instead of chemo that day, and I was admitted for treatment for a few days. What makes me a bit proud about this is that I figured out something was wrong pretty early in the disease process, so I wasn’t too miserable and it was pretty easy to get rid of.

Another thing we did with smarts (Eric helped) was to create a spreadsheet to track my brain mets.  The written reports were hard to  compare and I noticed the radiologists who were writing them were sometimes failing to write follow-up notes on mets that had been seen in a previous scan and listed in a previous report.  Tracking the mets this way just seems more organized–thus less likely to lead to mistakes–so why not do it? Since the doctors won’t, I do.

So I feel pretty vain about being smart in this realm that I am forced to inhabit.  Sometimes when I don’t feel energetic enough in the brain to engage at this level, I wonder how I will adapt if I ever lose the sharp, medical-smarts part of me for good.  I know there are cancer patients who do none of my self-education and don’t ask a lot of questions, and that must be fine for them.  But for me the educated back-and-forth and discovery of interesting new studies is part of this whole experience–a part that buoys me up.

IT Methotrexate is working!

I’ve been getting intrathecal methotrexate (methotrexate injected into my cerebro-spinal fluid) for about a month now, which makes for a busy chemo schedule twice a week in Albany along with my other chemo regimen. But it seems to be working!

Texting with my oncologist Texting with my oncologist

I don’t know what this means for my chemo schedule in the next month or so, but I I know it’s good news.  Only half of patients respond to methotrexate at all, so I’m in that half, which is great.  Now median survival is seven months, with 15% of patients stretching that out beyond 12 months.

My report card

Recently a few of my closest family members and friends got together and wrote up a report card for my recent course load at the University of Oncological Resistance (UOR).  It is pretty funny so I thought I would share it.:

Ellen's report card

Today is “quick” chemo (just methotrexate) and my stepsister Deb, who is visiting, is taking me.  Then we will stop by the Honest Weight food co-op in Albany to get ingredients for all the yummy things Deb is going to cook for us.  Wooo!

I am still really fatigued most of every day–I assume it’s the demanding new chemo schedule.  Hard to adjust to, and I hope it’s just a phase.

The evolving bucket list

Originally my sparse “bucket list” featured taking my family with me to the bottom of the Grand Canyon, where I had been but they had not.  Then there was spending relaxed time in France, which we did for almost two weeks last summer; and I wanted to go to England again, too (which I did last September with my mom and Spee).

Now the list looks like this:

  • Finish building a Little Free Library for QIVC and neighbors.  This is now 90% finished, thanks to this weekend's focused work by my mom and her friend Paul!
  • Get the decorative railing at the top of the stairs finally finished (by our builder friend Glenn). Designed by me years ago, it was set aside so we could finally move in! and finish it later.  It is now over five years later. :)
  • Go to Montréal on Amtrak.
  • Teach Jess how to shift gears.
  • Go to Chipotle with Will! Never been there, and he really likes it.
  • Some more time in New Orleans with my mom (who lives there) and her cast of friendly characters.
  • See the barn swallows return to their summer haunts around our house and build their yearly nests in our eaves.
Seems doable!

Weekend update

No, not that Weekend Update!

Dealing with Fatigue:

Boy, do I sound tired! Possibly more tired in my voice than the rest of me.  I did notice today that my voice was really weak, so you are getting to hear what that sounds like.  Not much like me, at least to my ear.

Post-chemo report

Today was almost completely taken up with “double chemo” along with a day-one-of-the-cycle appointment with the nurse practitioner who works with my oncologist. My oncologist is on vacation–and I hope he is vacating enough because he’s got to last me and not burn out!  How is that for thinking long-term?

I still like to think of these chemo days as pampering and “spa” days. I can ask for pillows and warm blankets and stuff from the nurses, and I know a lot of them by now somewhat, so the infusion suite is a friendly place to spend a few hours.

Seems like the first day in each cycle of Thursday chemo (Gemzar & carboplatin) is about four hours long, start to finish.  That includes blood work and an appointment with a practitioner before chemo.  And intrathecal methotrexate afterward.  today we left the house at 11 and returned at about five I think.

I felt like hopping into bed and invited some of my associates to watch a stupid movie with me. It was really stupid. I have a small headache and just feel kind of punky, but no nausea or queasiness – all that anti-emetic premedication really works. And in fact I am looking forward to eating some dinner.

Meanwhile, back at home, if you hold your arms just right…

IMG_5918

…Look what you might catch!

IMG_5917

"Quick" chemo today

A bit about today’s trip to Albany Med:

Late this afternoon, after Jess and I watched some episodes of “Elementary,” our friend Arti stopped by with some homemade creampuffs.

IMG_1525

And I replied irreverently:

Chemo-day update

About today and my current chemo schedule etc.:

After all of this, I felt a little queasy and rested In the car all the way home. But then I walked from the parking area to our house, ordered some food stuff from Eric, and marched up the stairs wearing my back pack foot-over-foot like a normal person (1 foot per stair).  Also, Spee and I took a 15-minute walk on the road in the snow just before Eric and I left for Albany. So although I am tucked into bed right now, I am feeling like I had an energetic day.

That walking up the stairs with the fullback pack myself was a first since early December. Never discount how bad pedal edema can be for your strength and health, That’s my device.,

Speaking of advice, at the end of our time with the nurse practitioner, I offered again my attention as a midwife, since she is due with baby number two in April and not having a very happy pregnancy. So I didn’t push. But she took me up on it today and we talked about the recommendation that she be induced for this baby because her first baby came pretty fast. She lives 20 minutes from her hospital. It was a very fun conversation to have because I got to use my midwifery skills right on the spot.

Now I’m back to resting my brain and body in bed with Eric next to me.

Hair fun

Lisa and Aaron, who visited to help out (tremendously!) for the past few days, did the clay-dye job the other night in the bathroom with friend Anne while Jess supervised from the bathroom shower.

Hmmm, I look a little tired in that last photo.  Yesterday was my fullest and most energetic day in weeks.  Shivani and I went to midwifery peer review, driven by Lisa and Aaron, who explored Saugerties.  Nowdays I pay the next day for days like that--just in fatigue.

Plans for the rest of the day: a visit from the palliative care nurse, and before that some craniosacral therapy with my friend Meg. Then maybe a nap or Netflix before dinner.

I am still working on those voice memos for the blog. Let me know if they don't work for you–hoping they are easy because they sure are easier for me.

Now for lots of pictures!  I am really enjoying pictures these days.

Shaker Lemon Pie story, plus.

Thanks to good drugs, I had no nausea or vomiting after my double chemo last Thursday. Go, Emend! I don’t care how expensive you are–I love you.  I do seem to be more worn out than usual.  Or than I expected.  Since my legs felt stronger, I went for a walk beyond the mailboxes on Thursday or Friday, and I made it back! With a few rests. But this weekend I have mostly sat around and indulged in Netflix, at least when not learning new blog posting technologies such as below.

In general, though, I feel all right and I’m doing pretty well at taking care of myself except for the things that require two functioning hands. Unfortunately, this includes putting on most shirts and other important self-care tasks. My hands are damaged from chemo-induced neuropathy and we don’t know yet whether, now that I’m on a different chemo regimen or two, they will get worse or better. My feet are still pretty bad, especially the left one, which feels like a block of tingly wood that does not want to be touched.  That left foot is the major cause of my unsteadiness walking.

Here is last week’s community Shaker Lemon Pie story out loud:

 

Lemons and sugar Lemons and sugar

IMG_1425 One-crust pie

 

IMG_1426 Two-crust pie

Prevailing mood post-surgery on double-chemo day #1

Chemo took a long time today but went fine.  When we met with my oncologist beforehand, he noted that even with a brain bleed and a hospital stay–which always kinda takes it out of a person–I was definitely clinically improved compared to my last few visits (meaning he could see the difference in my mood, energy level, and strength).  That was sure true–I could feel myself getting stronger and more stable in the legs even every day I was in the hospital.  And being more able to take care of dressing and stuff, too, despite the lack of one functioning hand and having, still, one block-of-wood foot.

After all, it's not brain surg--oh, yeah it was!

Call went well with the surgery yesterday midday and Paul has gone well cents. Haahaa

(“All went well with the surgery yesterday midday, and all has gone well since.”)  Just thought you all might like to see what I have been trying to live with re dictation software so far!

We are home and some beef stroganoff awaits me for dinner downstairs…so that’s the news for now.

Resting up at home after a nap together Resting up at home after a nap together

Still in the hospital, but otherwise great

Perhaps you are wondering how this latest day stuck in the hospital went.  Here's the report!

First night in the private room First night in the private room

Yesterday's final CT scan showed the bleed beginning to resolve.  Yay! So all was set for surgery today.  I was NPO--no food or drink--from midnight on, but got permission to skip the all-night IV fluid drip because of my previous horrible hospital-acquired edema  that pretty much disabled me for 3 weeks.  Then they kinda had to let me have ice chips this morning.

Surgery went well around midday and now—after 10 pm—Eric and I are in my observation alcove for the night (no more private room) and are enjoying ice cream after a delicious and long-awaited Panera soup, salad, and bread-and-butter dinner.  I think I ate enough to make up for all day’s no-food order!

We’re going for a walk around the floor soon, before Eric leaves for the night.  We walked 0.6 miles this morning before it was suddenly time to go to surgery.  I am feeling stronger in the legs every day, even in the hospital,

After he goes…*New Yorker* or Netflix w/ headphones until the dexamethasone I took late at 6 will let me fall asleep.  Patients in the neighboring alcoves seem to want the TVs on, even this late, so I will need the earplugs I received a few nights ago in an earlier loud alcove room down the hall.

We expect discharge tomorrow, whether early or late in the day.  Eric will be back in the morning to wait it out with me. Normally someone post-op with a brain bleed might be kept an extra day or two for Heparin and observation...but my neurosurgeon said he and my oncologist agreed they could only push me so far.

hidden toes hidden toes

badass selfie! badass selfie!

Another evening update from the hospital

I am still in the hospital, but in a private room now so things are better.  Last night we--five of us--had a Thai food picnic along with cranberry-orange granita made by my friend Isa, and then Jess and I watched our TV show together while snuggling and Eric did a bit of work in the family waiting room.

I did not get to go home, but surgery is scheduled for tomorrow. Morning, we hope.  Today I had vein studies (ultrasounds) to assess clot risk and another CT scan that the neurosurgeon will use like a GPS map tomorrow.  Other than that, it has been walking the halls, meeting new nurses, and doing a few bits of business with Eric, who arrived around 10 AM.

Right now we are waiting for Jens, Spee, and Jess to arrive for dinner and hanging out. This is one of Jess' two weekly nights at home, because they are boarding five days right now at Bard Academy. So I want to see as much of Jess as possible even if I'm not home.

After an extra weekend spent at home instead of at Buxton--which ended up being spent largely here at the hospital or back-and-forth in the car--Will took one of our VW's back to school with him yesterday so he can come back and visit when he needs to.

Spirits are good even though I miss my bed and my sofa and my fire.  I have my people.

Quick evening update--good news

Just heard from my new nurse that my CT scan at 1 PM showed stable bleeding--so that is excellent news, no spread of bleeding to be seen today and no need to check my neurological all the time tonight. Woo hoo!

Still hoping to go home sometime tomorrow to await the Ommaya surgery when the neurosurgeon decides it's time.  Discharge will depend on both the Neurology and Neurosurgery services setting me free; then the Medicine service will cut me loose as well.

Even later and less greater happenings

Yesterday I got admitted to Albany Med for a little cerebellum bleed discovered when doing pre-admission CT scan for the Ommaya reservoir surgery Tuesday.  So now it's the next day and I am at AMC being checked every hour for neurological status, which is fine so far, despite a couple medium headaches.  Tylenol worked! I will be here most likely until tomorrow. Eric will be home this afternoon from his California work trip. My mom is here too until tomorrow.

Latest not-at-all greatest developments

The results of my recent MRIs were not good.  The pelvic MRI to see what might be causing left leg pain showed "patchy areas" in the cauda equina (nerves just below the end of the spinal cord). That worried everyone and triggered a quick repeat brain MRI and a cervical spine MRI to look for more deposits or "thickening" in various places.  Both showed evidence of more cancer-cell deposits on the lining of the spinal column and brain, which can cause swelling that impinges on nerves and do other damage to the nervous system and the brain.  Cancer in the cerebro-spinal fluid, which is called leptomeningeal carcinomatosis or leptomeningeal disease (LD), is just about the worst development in metastatic cancer.*  

Eric and I talked with my oncologist for half an hour Saturday morning (he gets called at home with bad results). We discussed treatment options and the option of no treatment--because the one standard treatment for LD only works half the time and has nasty side effects.  "Works" means you maintain the function you have--people don't (usually) get better from this.  Life expectancy with no treatment is only 4-6 weeks.  Life expectancy with standard treatment, according to one study, was a median of 7 months for LD from breast cancer, and shorter for LD from other common cancers. 

So that's sobering.  We had lots of questions and called him back that night to discuss them.  But basically I just don't think...or feel...that it's time to give up yet. 4-6 weeks?  I will try for those extra months as long as my quality of life is still decent despite side effects--headache, nausea, vomiting.  And more trips to Albany; twice-weekly chemo delivered--here's the cyborg part--directly into my brain via a "reservoir" under my scalp, connected to a tube that reaches into one of my large ventricles.  That way the drug can be infused directly into my cerebro-spinal fluid (CSF).  It's called an Ommaya reservoir but I just call it the brain port.

I'm also planning to try taking penfluridol, an old oral antipsychotic drug that seems to kill triple-negative breast-cancer cells...apparently in people (retrospective study) and definitely in mice (randomized controlled trial). Would that I were a mouse. But at this point I'll try it anyway if I can.  The exciting thing about this drug is that it acts in the brain perhaps even more strongly then in the rest of the body. Most chemotherapy drugs, by contrast, do not cross the blood-brain barrier at all.  So for someone with cancer in the body and worse cancer In the brain, it seems worth it to start acting psychotic right away.

There don't seem to be cutting-edge or novel ways to treat leptomeningeal disease that are being done at bigger cancer centers; the standard of care is methotrexate everywhere, It seems. Eric and I were exploring the idea of going somewhere bigger and busier to deal with this complication because a place like Dana-Farber would probably have more experience with LD than our one oncologist here in Albany. But that introduces the need to drive long distances for treatment, which decreases quality-of-life quite a bit. We also asked about and looked into clinical trials but have yet to find anything that fits.

We are still draining my left lung every three days and the amount of liquid is going down, Which may mean that the chemo I'm on now is working to kill off little cancer cells. Cross your fingers!

I am now back on high-dose steroids to decrease brain and spinal-cord swelling, Which could mess with my nerves or cause a seizure. No one will ever see my cheekbones again. I am very sad about this. And a lot of me does not quite believe how this is going–that is, about as badly as it could go. But on the other hand my foot edema is gone and my daily headaches went away and although I have LD, it does not seem to be kicking my butt with its patchy deposits at the moment.

More later on all the thoughts this makes us all think...

*LD is more common now that more women are surviving longer with metastatic disease--the cancer has more time to find its way into the CSF.