Posts by Ellen Harris-Braun

Yesterday was the full moon and my brain-zapping afternoon.

The first half of the procedure, these were my breath mantras:

“goodbye, brain mets” or “goodbye, cancer” on the in-breaths

“thanks for not causing me problems” is what I was thinking on the out-breaths

The second half, I changed them to:

“glowing radiant cleansing cleansing light” that was what I was thinking on the in-breaths

“degrade gracefully, tumors” or “degrade gracefully, you confused messed-up cells” is what I was thinking on the out-breaths (that’s a software term about how to build features so that if they fail, they don’t mess too much else up)

I had to take a break after the first LONG set of zaps and the next set. (FIrst long set was for the 5th brain met they just saw yesterday on the more detailed MRI…the one in the cerebellum but very close to the medulla). That was the deepest one and closest to something important and thus the most complicated treatment to execute–12 zaps and they were from many angles, so lots of time in between zaps to move the table to different angles and/or move the zap machine. (Zaps themselves were maybe 15-20 seconds each.)

The doctor said there is maybe a 1% chance of some kind of damage/side effect from the radiation delivered to that met, because of its proximity to the medulla, which is important. It would be a motor-control kind of complication, he thinks, but he also said “I would tell you it was one in a million but that would not give you any information”; he was very confident that they had done the best they could to minimize the collateral radiation dose to anything but the tumor and that there would not be a problem. He said he consulted with some other radiation oncologists across the country and they recommended that it would be safe to use even more radiation without more risk of side effects. But he stuck with a lower dose that he thinks will be enough, and safest. He showed us the beam plans (there were 56 different beams) and how they targeted the tumors and how the radiation dose fell off outside the tumors. Interesting stuff. So anyway. After talking to him for a while and looking at scan pictures, we waited & waited because they had to correct something in the machine, so the procedure started 90 minutes after they thought. I think my Xanax was mostly used up during this waiting time!

Eventually it was time to start so I got on the table, got the mask snapped down, and they did all the measurements to make sure the mask and I were in the exact right place to the milimeter. To do this they put some kind of frame or hood on top of the mask, then stuck rods through channels in the frame to touch certain points on the mask, reading off the distances to see if they matched the distances they recorded the day they tested the mask. I had to wiggle a bit to make them match at first. The mask is attached to stanchions that are attached to the table and everything is minutely adjustable in all dimensions…they kept putting a bubble-level on my forehead too! After each series of zaps they had to re-check the leveling and stuff, but not the rod measurements.

So after first long set and the 2nd set it was about half done. And by then the back of my head, my scalp, was burning burning burning with hot-sauce-in-the-eye-like pain due to my head resting on the plastic mesh of the head hammock and not being able to move one little bit. The pain didn’t start for about 15 minutes, but then got worse and worse. Also the Xanax wore off during the first long set of zaps–I was nice & woozy at first when they were doing all the measuring and set-up, and had little dozing dreams, but then rose RIGHT to the surface eventually.

It was hard not to move my pelvis and my legs but I wiggled my feet a bit and shifted my hands around so that was bearable. And I kept relaxing my shoulders. The mask really wasn’t that bad at all, just made me a bit wiggy eventually. It was the scalp burning that was so bad, and I had to let my head relax “into” it for all the zaps rather than tensing up.

So I asked for a break and got to get up, rub my scalp, weep a bit, go pee, and take another Xanax and a pain med to try to make the scalp pain less, and hang with Eric for 10 minutes. After that I was ready to get it all over with.

So back on the table, head in the hammock, knees resting on the wedge PLUS the (ancient) sofa cushion we had brought from our reading nook to give my legs a bit more elevation to save my lower back (it worked, and the cushion is from sofas my dad had custom-made for his house in 1973, so there was a little dad in there with me). Snap on the face mask, adjust by wiggling, then they did the measurements again with the little rods and we were off on the second half–three sets of zaps. Mets numbers 3, 4, and 5. For 10 minutes, blessedly no scalp pain, but then it started again. And got just as bad, but I knew there was less time to endure it now. The Xanax worked for about 30 minutes; I could tell because I didn’t need to move my feet or hands at all then. I saw that Xanax is made less potent by steroids, and boy was I dosed up with steroids for the procedure. So that was probably part of why. I was also reminded, though, of the “elephant-sized dose” of Valium I needed when I had my wisdom teeth out during college, and the time I snapped myself right out of marijuana goofiness when trying to treat nausea in 2006 (I didn’t like the combination of the dumb smile on my face and the fact that I wasn’t feeling a bit happy, and with what seemed like an actual snap, back to brain normality).

I did my breathing mantras whenever the zaps happened, and listened to the music I was allowed to bring, and wished it would be over soon.

After set #3, they came in and said the next two would only take about as long as that one had. Yay!

After set #4, they said the last one would be quickest because it was 10 zaps and 7 of them were with the table in the very same position. Yay! I was getting pretty much to the end of my rope at this point with the scalp pain. I started counting them, but realized i didn’t need to (and could focus on “Telegraph Road,” a 14-minute wonderful song by Dire Straits) because when the table moved I would know I had 3 left. Each of the last 3 had a different table position and then we were DONE!

And they came and took off the mask and I could lift my head and in a bit sit up. Oh what a huge relief. And then walk back to Eric in the private waiting room. Hallelujah. The nice nurse Joanne offered me a wheelchair to get there but I said only if she rode in it and I pushed. She said “No thanks, I’ll just go remove the evidence now!”

We got our stuff together, went over the meds schedule, made an appointment for next Thursday, and left. I had awesome sushi in the car bought for me by Eric (no lunch). I had my pillow and my huge purple scarf my mom gave me and I had a little cry and now I am tucked up in bed.

So, a good day?!?!?

Today is the day for stereotactic radiosurgery at Albany Medical Center. I am loaded up with anti-seizure medication and steroids, and will get more steroids and Xanax before I get my head nestled into the “head hammock” (nicer than calling it the rigid-plastic-mesh face cage) for my 2+ hrs of radiation beams. I have to lie still that whole time, but the head hammock will keep my head still for me.

The “head hammock” made of rigid plastic, attached to the table: <img src="/blog/images/headhammock1.jpg" alt=“The “head hammock” made of rigid plastic, attached to the table” title=“headhammock” class=“size-medium wp-image-169” />

When it was made it was flexible while warm and they molded it onto my face:

This was a cool picture Eric took:

That was made on Friday after I had chemo Friday AM. The chemo was easy–an IV, a 5-minute “push” of the Eribulin, some anti-nausea medication which worked well on Friday, plus for good measure, a shot in the shoulder for the bone medicine Xgeva.

Over the weekend and on Monday I was queasy for most of the days, but it wasn’t too bad. Ginger ale was the thing that helped the most. Next time I will ask for some Kytril (anti-nausea med) to bring home. Friday I was just strangely hungry! We went out for Thai food for lunch before we left Albany, after the set-up stuff we had to do with radiation oncology. (Check the mask, take measurements, do a CT scan, do an MRI).

So chemo is over with until the 20th and now it’s just the zapping ahead. Which I have to get in the car and go toward right now! My friend Isa said: “I love that, by about 3pm today, you’ll have a shiny, well, healthy and happy brain.” I am holding that intention close!

I had an IV in my left wrist for chemo on Friday. I had to move my watch, which I check way too often, to my right wrist. So I decided I needed a little reminder for my left wrist:

At our appointment with the oncologist this morning, we put our heads together and juggled the brain-zapping procedure (1/15), chemo on days 1 and 8 of a 21-day cycle, and our planned last-minute trip to the bottom of the Grand Canyon (1/25-1/30 if it all works out). Stir in some anxiety on everyone’s part about the 8 weeks that have elapsed since the MRI that showed metastasis–8 weeks without any chemo treatment yet–and you get an audacious plan: start chemo tomorrow, brain-zap next week, continue chemo a couple days late on the 20th, go adventuring, and return for more chemo the first week of February (and the second, and fourth…repeat as long as it works).

After that plan was made, we stopped in at radiation oncology to see what was up with my set-up appointments, and they had just called to tell us to come in tomorrow. But there we were, so we got started today with a little face-and-head-mask-making. Pictures to come. I know you have all always wondered about the science-fiction-like details of stereotactic radiosurgery.

Last Thursday & Friday we met with the neurosurgeon and the radiation oncologist (at Albany Medical Center) to find out more about my brain situation and plan my stereotactic radiosurgery. It really does look like an ideal treatment for relatively small brain metastases (such as mine). I am the type of patient for whom this treatment is often done, and it is often done at Albany Med. Unfortunately this means that they are very busy and I will have to wait until mid-month or the second half of the month to get zapped.

I am learning a bit about this organization Sharsheret and was really happy to watch this video interview of the founder…and note the date it was done: December 2010.

ASCO (American Society for Clinical Oncology) top 5 evidence-based recommendations for 2013.  Two are very relevant for me, one less so, two not relevant.

ASCO’s 2012 top 5 list.  Two might sometime apply to me, two others are about earlier stages of breast cancer.  An excerpt, from the one about when to stop chemotherapy:

Smith and Hillner¹⁵ suggested the simple rule that patients must be well enough to walk unaided into the clinic to receive chemotherapy. When oncology practitioners receive direct feedback about overuse and misuse of chemotherapy in the end-of-life setting, they quickly improve practice, with chemotherapy in the last 14 days of life falling from 50% to less than 20% in one quarter.³⁵ Stopping anticancer treatment should always be accompanied by appropriate palliative and supportive care and referral to hospice, and the best practice would be continuation of palliative care started concurrently at the time of diagnosis for “any patient with metastatic cancer and/or high symptom burden.”

I am having great fun watching these music-video parodies, which are knowledge translation about evidence-based medicine:

http://therapeuticseducation.org/videos

(Originally seen via Lamaze’s Science & Sensibility blog)

I “should” be working on my delayed paper for last semester’s Critical Inquiry class, which I am looking forward to digging into, but there is so much else to do right now that–imagine that–I haven’t done so yet.  I still don’t know when my appointment is, with the Albany Med Neurosurgical dept. and the interventive radiologist, to discuss, plan, and schedule the brain treatment.  Weird…the more serious it is, the less likely you are to have an appointment?  If I needed a wart removed I would surely have an appointment.

So far I have only had the kind of cancer in which it’s the treatment that makes you feel so sick and unhealthy, not the cancer.  I guess this makes me lucky.

However, it is kind of a weird situation to grapple with mentally.  You are walking around harboring a deadly disease and you feel fine, you look fine, and you are not fine*.  Then chemo makes you tired, sick or sickish, prone to catching whatever’s going around, and possibly bald.  Plus a varied bouquet of other side effects depending on the chemo.  And so you feel sick for sure.  But it’s the medicine that’s doing it to you. Bizarre.

Last Friday, a week ago, I got home at 5 after the CT scan, bone scan, and signing up for the trial, went for a walk, and my phone rang at 5:39 with a call from "RESTRICTED."  It was my oncologist calling from home to say that the CT scan showed spots in my brain.  He hadn't seen the CT scan, just gotten told about it from the MD on call.  He told me we had to go get an MRI ASAP via the emergency room to make sure there was not dangerous swelling and to see if I needed steroids or anti-seizure meds.  Yikes.

So we went to the ER that evening. Got there at 7:15, eventually got neurologically checked out by the ER resident and the attending, and met the neurology resident.  He said of the CT scan, "I saw the two spots, but I am not impressed" which made me laugh.  Many nice people at the ER.  Much slowness. I kept having to remind myself, when I felt panicky "what am I DOING here?" feelings, that I was only in the ER because that was the way to get an after-hours MRI.  There was no emergency.  I was not emergent at all, really.

I got the MRI starting at around 10:30 (Eric got to be in the MRI room, with earplugs and ear protectors and everything).  The MRI folks were nice too.  An hour of NOT MOVING MY HEAD got pretty difficult in the end due to a fold in the sheet covering the headrest, or something…slight discomfort because weird ledge-like feeling became a BAR OF FIRE because I wasn't allowed to move.

Then we waited another long long time for the neurology resident to read the MRI and talk to the attending neurologist, Dr. Kenning, who was at home.  This was when I started to feel a bit like an animal in the zoo pacing around my cage.

So I seem to have two brain mets that are so far not causing any real symptoms anyone was impressed with.  I said my eyes had been kinda blurry all day until evening, I said I had a headache but not a big one and wouldn't you if you'd spent all day at AMC getting injected and scanned and then come to the ER?  None of that really worried anybody (although vision changes are an effect of brain edema).  There were many tests to assess my neurological intact-ness, meanwhile Eric and I are programming a new feature to MANA Stats on his computer or I am reading the New Yorker or we are playing this really tricky videogame.  Finally the resident reported that it looked the same on the MRI, 2 lesions, minimal swelling, and since I was showing no signs of any problems and was "neurologically intact" (*New Yorker* reading, check; programming, check; and the game was a real brain-twister) did I want to go home and come to see the neurologists on Tuesday?  Well yes indeed I did.  No steroids? No, no need for steroids.  We left at 1:45 am.

So this is additional bad news for sure.  However, it ended up not messing with our trip--although from Friday night to Sunday evening we figured we weren't going to New Orleans after all, due to having to see the neurosurgeon. However, he called Sunday and said that we should go, that he would start setting things up the week I am back, that we wouldn't lose any time in the treatment plan if I just came in a week later since it was Christmas week etc.  Great!  So unexpectedly, we went, and I am currently sitting in my mom's living room in her newly-acquired house in the Marigny neighborhood of New Orleans, having just walked all over the French Quarter with Eric.  The only trade-off was having to take low-dose steroids just in case of swelling while I am gone.  He said if he had actually *seen* me then maybe he would feel comfortable without me taking anything, but under the circumstances...

Next week we'll meet with the neurologist and the radiation oncologist and they will have figured out whether they can treat the mets with stereotactic radiosurgery (http://www.nlm.nih.gov/medlineplus/ency/article/007274.htm or http://www.abta.org/care-treatment/treatments/stereotactic-radiosurgery/) or with regular surgery.  Whole-brain radiation, which scares the crap out of me, is not used unless those other two won't work.  The mets are in the left motor cortex and the cerebellum and the neurologist said they look, so far, reachable by radiosurgery.  So that's…good?  Because of where they are, I am now on the lookout for right-side movement problems or weakness (none) and problems with balance & coordination & walking (none).  Also worse headaches than I have occasionally been having, and worse vision problems.

When the mets are "stable" then I will be eligible for a trial again…until then, I'm not.  So that's another piece of immediate badness.  And at the big-picture level, it makes my prognosis worse.  Hard to treat the brain.

Moral: *Never* answer a call from an unrecognized phone number if you have advanced cancer!

Dateline: Albany Medical Center Imaging Center

One of the hard parts of this is how little certainty there is, at all levels big and small.  The most obvious uncertainty is about how many more years I get and how I will get to live them.  Then there’s the more immediate: after a consultation with Judy Garber at Dana-Farber on Tuesday, and a long meeting with my oncologist at Albany Medical Center/NY Oncology Hematology on Wednesday, we still don’t know which treatment I’m going to be starting.

Here we are again.  I really never thought I’d bring this blog back to life but it is going to be the way I keep everyone up to date on my latest adventures with breast cancer.  And, if last time is any guide, it might be where I collect resources and information, share pictures, and post the odd thought on being in this odd position.

Having an invisible illness, especially one that doesn’t even have any symptoms at the moment, makes you an outsider in the regular world as well as an unfortunate insider in the world of the hospital or the world of oncologists.  It is a deeply odd feeling to be looking through cancer-drug trials on clinicaltrials.gov to see if I qualify for a particular trial or not; when I do, I think, Yay!, and then immediately think, why are you happy that you fit the profile of someone who would need to enter a drug trial for metastatic breast cancer?  (Well…consider the alternative.)

That’s what my surgeon said to me Tuesday afternoon as I got myself comfortable on the operating table at Albany Med’s somewhat sketchy-seeming “South Clinical Campus.” “Ready to be deported?” It took me a second. She was about the take out my port. I was ready.

It was truly weird to be fully conscious and lying there with a drape in between me and my right collarbone area while Dr. P. bustled around, injected some seriously burning lidocaine, and started pulling stuff out of me. First the catheter that went from the port into the subclavian vein, then through that vein to the superior vena cava near my heart. That was easy to remove. She sewed up the “track” the catheter made with a stitch or two and apparently that was enough to both close the hole in the vein and keep a hematoma from forming. (I know all this because I asked lots of questions. I asked lots of questions because it was far too weird to be lying there talking about something ELSE while this was going on. I tried that when the nurse asked me about being a doula, and it felt weirder and weirder to try to be two people at once: one being operated upon and one having a totally separate conversation. My hold on calm reality started to loosen.)

I’m done.

With the whole slash/poison/burn series of treatments for this summer’s breast cancer, at least.  Today was my last zap. We keep getting asked “So now how do they know if it worked?” or “Test results coming back okay?” and we keep explaining that they–we–don’t know.  That there are no test results.  That all of this (beyond surgery) was Just In Case.  That the jury’s out for oh, the next 5 or 10 years…ask us then and we’ll have an answer.

I have been following the story of an NPR reporter who has cancer (he has a blog).  I found this posting of his pretty on-target.

That’s because when it comes to cancer, hair is the marker of sickness and wellness.

…I am still here.

Radiation every weekday 25 minutes away is a good excuse for not doing much else on the cancer-patient front. But I have done some else: a visit to the gynecologic oncologist to talk about ovaries, follow-up with the surgeon, a date to go back to the OR to get my port removed (1/23), and lots of reading. My lifetime risk of ovarian cancer is around 44%. This is of a cancer that is only caught at a curable state 25% of the time. Makes one think.

…and I am finding myself a little annoyed at how my head is turning this funny dark color.

I’m four treatments into radiation, which is daily, at 10:30 AM at Berkshire Medical Center. On the efficient days, I walk in, say hi to the techs, change, go into the zapper room and lie down, they position me, they put in the beam-benders and beam-blockers and leave the room and zap me. Then return, adjust the machinery, put in the second set of -benders and -blockers, and zap me again. Each zap is about 30 seconds. During which time the bright lights in the room go on, a red light on the ceiling that looks like a police-car light goes on, a buzzing noise fills the air, and silently and undetectably the machine beams radiation through my left breast. I lie there counting my breaths and trying to figure out how to visualize something positive about this instead of thinking of the Russian ex-spy who just died of radiation poisoning in London. Wish me luck.

Okay, okay, so I’ve been trying to pretend life is it’s old boring self and haven’t had any blog-worthy thoughts in a while. Here’s something I didn’t ever relate, though: during my second chemo treatment, Eric led me through a visualization of the chemo drugs as light filling my body and shining all through it. For the next two weeks, although I didn’t feel so hot, people kept telling me I looked “luminous” or “glowing.” What’s up with THAT?