Posts by Ellen Harris-Braun

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 (Jess 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!

Tuesday was all day at Albany Med, but most of it was easy.  We got there super early–6:35am.  Getting the frame “installed” was weird but dealable, and having it on my head all day was annoying and weird and eventually made me a bit headachy, but was not too bad.

We had brought five movies but didn’t watch a one of them, as it turned out.  It was very comfortable waiting in the “living room” at Radiation Oncology and we were taken really good care of (except I didn’t need that because Eric was taking really good care of me). After the frame was put on and I had a quick CT scan, it was back to the living room to wait from about 7:30 until 2.  The time went by pretty fast, actually.  I had to figure out how to eat around the frame (with my fingers).  We did some work and took some pictures.

Our friend Dorian came to visit and brought art supplies for a little project I got into my head to do.  Also, delicious gourmet doughnuts!

Lounging with the frame

The doctors and the physicist did all the mapping and planning with Monday’s MRI and the morning’s CT scan, and they were ready for the procedure at 2, as planned.  The actual procedure turned out to be 90 min instead of 60 due to them having to set, check, adjust, recheck, adjust, recheck, adjust, and recheck the beam placements before being ready to zap me.  Each of those cycles included physical adjustment of my head cage and/or the targeting lasers and then a couple x-rays.  Meanwhile this whole time I am lying on a table with my head clamped into the frame and the frame bolted into the table.  Which put my neck at a weird angle.  We used folded towels to raise my shoulders so it wasn’t too uncomfortable.  This time I listened to Journey’s greatest hits (that’s what was already in the CD player and really, it was kind of fun) and then an REM album.

Eric has fun drawing on a picture of me with his phone

When they finally had all the settings adjusted, the 16 zaps themselves took a long time.  Ativan helped.  But by the end, the novocaine had certainly ALL worn off and my head hurthurthurt from the pin/clamps.  As soon as the zaps were done they came in, unbolted me from the table, got me up, and off into an exam room where they swiftly removed the pins & frame.   Then they bacitracin-ed my four little wounds and put steri-strips on the forehead ones and delivered me back to Eric in the living room.  Dr. Chandra came in to say hi–he looked about as tired as me–and didn’t really get the joke of my card at first.  But he did eventually crack a smile.

So we talked about my next set of zaps, with the much-easier mask routine (4 or 6 weeks from now–three tiny tumors that have popped up and grown a tiny bit).  Then I went home to eat a lovely dinner brought over by our neighbor and fabulous cook Marcy, watch a movie with Jess, and fall asleep.

(My tips for picking a hospital when you have metastatic cancer or some other long-term disease: besides good doctors and caring staff, find one with a good cafeteria–ours has good fresh sushi at decent prices!–and free parking.)

I’m actually up to 8 but Chandra didn’t have a hole punch.

It’s Saturday afternoon and all is quiet around here.  Which is good, because the three H-Bs in residence are beat!  All day yesterday and until 2 today we were spending time at Simon’s Rock learning about their new Bard Academy program for 9th and 10th graders, in which Jess is now (as of this afternoon) officially enrolled for the fall.  Jess will be a day student for 9th grade, though most of the students enrolled so far are boarding.  20% will be day students.  It was all exciting stuff but it was tiring to be outgoing, social, and attentive for so long at a time.  We’re excited to know what Jess is doing in the fall and to feel more sure that this will be a good program for them.

I felt a bit undercover in that context–with my thin but “passing” hair, my shirt covering my port and my compression sleeve (to prevent lymphedema in my still-somewhat-swollen left arm), my many scary medical appointments and procedures lurking in my recent past and even more immediate future, my low energy and physical fatigue bolstered and covered for by Eric…meeting all these new people and having all these parts of who I currently am be hidden away while trading basic information with other parents, with Simon’s Rock (early college) students, with faculty and staff.  All while thinking about whether this was the place, the context, the culture, the institution, the people where Jess would get what they need if and when I get sicker and sicker.

So.  Now we’re home.  The last week has been one of slow improvement.  The Neurontin seems to be working pretty well on my leg pain and I’m down to 3 morphine pills over the last week.  I’m doing my PT exercises twice a day (30 min at a stretch), struggling to find energy for a walk as well, doing qi gong sometimes too.  My brain is back somewhat in shape because: no morphine.

The weird thing about the Neurontin is sometimes I feel messages from my knee that feel very–the only way I can describe it is “wide,” like of large amplitude, but they are kind of empty rather than being full of pain like before.  Very strange.  Also my legs feel very noodle-y and weak, like I just hiked 20 miles or had a big scare.

So, Tuesday is my brain zap which means Monday I have yet another brain MRI.  Tuesday I’ll be there from 6:30am until probably 3 or 4 pm, spending most of that time waiting around in Radiation Oncology’s very cozy “living room” with Eric or whoever else comes to keep me company.  They better not be easily weirded out, because by 7 am I’ll have a metal “frame” attached to my head to allow for very precise zap-targeting, and it stays on all day between the early morning when they put it on and do a CT scan of my head in it and the afternoon when they do the zapping.  In between they merge Monday’s MRI with the CT scan and do the planning, which means designing the radiation beams to go in various parts of my skull and cross over in the tumor.  They are powered to only do damage where there is more than one at a time–where they cross.   The location of the tumor is tricky so the frame is needed to make sure I stay the most still possible.  When using the mask, as in my previous two zap adventures, they build in 1 or 2 mm of marginal zap zone to make up for the bit of movement possible in the mask.  This time that’s not a good idea.  So I’ll have the frame attached to my head.  I will spare you the pictures because it looks kind of scary, though the neurosurgeon assures me that people are way more freaked out about it ahead of time than after they’ve had it on for 10 minutes.  Basically it’s a metal structure that will kind of orbit my head and face, held to my head by pins that are tightened down to my skull in two pairs (front & back), kind of like little clamps.

Sounds fun, huh?  I think I’ll just rest up between now and that next adventure.

New alphabetic possibilities

So with my current life I can almost pull this progression off: P PT PTT APPT SAPPT (pee, physical therapy, prothrombin time–a test of clotting ability that I actually don’t have to do–yet another medical appointment, and that would be enough for me and my energy would be sapped!)

The narrative burden I’ve given myself with this blog can feel kind of hard to carry along sometimes, and the last two weeks have been like that.  I have been busy with appointments and imaging procedures, and very tired, and not all here brain-wise to boot. Here is a quick catch-up summary for those following from home:

• I left the oncologist’s office with a prescription for oxycodone–possibly overkill, but I can’t take NSAIDs or Tylenol, and that eliminates a lot of pain meds.  Unfortunately the oxycodone didn’t work at all–except to make me woozy–so after 4 or 5 days of that he switched me to a very low dose of morphine.  Which makes me way more woozy–so much so that I mostly can’t concentrate for long and keep dropping off to sleep when reading and just feel very fuzzy.  But it does seem to work on the pain somewhat, so I am very happy to be climbing out of that depressing trough of intermittently immobilizing pain. When my leg and my shoulder hurt at the same time, I feel like a butterfly pinned down to a box.

• The vascular surgeon was not particularly informative, hadn’t looked at my chart, and didn’t seem to want another patient, really, but grudgingly agreed I could come back in 3 months for a look at the clot to see if it has done a good job resolving.  Blood thinners for most likely at least 6 months, though.  I now know the correct way & location to inject the Lovenox twice a day–don’t trust the ER to give you good instructions–but I still get a bruise about every third time.  Looks pretty pitiful as well as not feeling real good around the “love handles.”

• All the imaging studies I had on my leg came back negative for more cancer as a cause of the leg pain, which is great.  (X-ray, ultrasound, bone scan, CT scan.)  This week I finally got to go see an oncological orthopedist who thinks it is some kind of sciatica-related problem (the leg) and has no idea about the shoulder.  He prescribed me Neurontin for the nerve pain in both limbs, and PT to help the leg. He (unlike my oncologist) was not eager to do an MRI of my pelvis & hip–he said breast cancer metastases don’t tend to hide on bone scans and CT scans like mets from other types of cancer do, so he trusts that the imaging I’ve already had is good enough to go on.  For now.

• My liver enzymes went way down, almost to normal, by the time they were tested again on the 26th, and then were normal by the 31st, when I showed up for the first day of my 20th cycle of chemo.  So: Tylenol was most likely the problem.  And now I’m back on chemo, which makes me relieved.  Maybe if/when I get to 25 cycles on the same drug I’ll get some kind of medal?

• I hope I respond well to the Neurontin and can taper off the morphine.  After just a few days, it seems like that might be working, so cross your fingers that I will be one of the strong responders to Neurontin.  Right now the brain fog is the thing I’m having the hardest time with.  It is not an unpleasant feeling, but it means I haven’t figured out how to work on any real brain-centered project, and I have quite a few hanging around waiting to be finished (or started).  I am very low on physical energy and feel sleepy a lot.  (Kind of like last March.) Neurontin can also cause fogginess but apparently not as much as morphine, which really does a number on me apparently.  Yesterday I took only one morphine pill, at 7 am, and didn’t need another (yay!), and finally felt like the fog was lifted by 10 pm.  At which point I had to go to bed. Oh well. I feel like I’m mentally down below the surface of some weird water and struggling to get back to the air. That sounds too desperate, but take away the desperation and that’s the feeling.

• My first PT appointment is tomorrow and I’m also seeing the functional chiropractor I’ve seen twice already, who gave me core- and leg-strengthening exercises meant to fix what’s wrong.  I will have to figure out how to blend what he wants me to do and what the PT folks want me to do.  PT 2-3 times per week. Luckily it’s only 20 minutes away.  It’s in a town we don’t go to much, in the same plaza as Ocean State Job Lot, where I never have been, so maybe we’ll acquire a lot of junky stuff at really cheap prices.

• My 6-week follow-up brain MRI last Thursday was the last of the imaging studies that filled up my two weeks instead of chemo.  This morning was my appointment to find out about it and make a plan.  One of the two “dots” we were following closely (6 weeks between scans) stayed the same, just a dot (apparently this is now approved radiology-report terminology…maybe I missed a footnote defining the minimum and maximum diameter of “dots” somewhere).  The other dot grew and is now a 6-millimeter tumor that we need to zap.  It is in the pons, which is part of the brainstem, which is hard to target and houses many important basic-level control centers (like for breathing).  It’s in the middle of the pons (which might be better than, say, on the posterior surface where I think that respiratory center is).  So next week I’ll have the appointments to set that all up (another MRI, etc.) and week after next, probably on the 14th, I’ll get zapped for the third time.   Woo hoo.  The radiation oncologist has really relaxed since we first met him but he still doesn’t crack a smile at my jokes.

I think that’s it for now–that’s a lot for two weeks. I’m hoping for a calmer next two weeks, despite zapping my brain, and an even calmer rest of April for recuperation and catching up on work.

OK, when was anything I ever wrote actually “quick”?

So, a quick report on our vacation in the Florida Keys last week.  We stayed at three Airbnb places.  First, three days on a small houseboat anchored in a shallow bay near Key West, a 20-minute kayak paddle from shore.  Very small, no privacy, lots of climbing and clambering to use all levels inside and outside.  Very fun!

Then after an afternoon at a beach park in Key West, we moved halfway up the Keys to Marathon, staying at a house in a working-class neighborhood near a fishing dock.  That night, Wednesday, I noticed when getting ready for bed that my left arm was quite swollen.  It didn’t hurt and I hadn’t noticed any swelling earlier, but maybe there was the beginnings of it earlier in the day.  In any case it didn’t seem like a good development at all, so Eric and I went right off to the emergency room, which was only about a mile away: Fishermen’s Hospital.  On the way in to the ER was a big display case of fishhooks that they had removed from patients.  Will & Jess stayed “home.”  Good thing they are teens now.

At the ER it took forever but eventually I got assessed & got an ultrasound to look for obstructions in my veins.  There was something there but it is in a vein under the clavicle so it was not possible to tell for sure what was wrong with ultrasound.  The suspicion was a DVT (deep vein thrombosis, aka blood clot), which is dangerous primarily because if the clot breaks loose it can lodge in the vessels of the lungs and interfere with oxygenation (this is a pulmonary embolism).  So I had to go to a bigger hospital where I could have a “venogram,” which as far as I can tell is an angiogram for veins rather than heart vessels.

By the time this was all decided, it was about 5 AM and Eric and I had been up since 7:30 AM.  It was more than two hours to the transfer hospital at the south end of Miami, and longer with traffic.  So even though the ER would have let us drive ourselves, the ER doctor also said an ambulance could be justified given the urgency and the situation.  So we chose that; I went in the ambulance at 6:30 and Eric went home to the house to sleep and be with the kids until we knew what was next.

I dozed in the ambulance and it took almost three hours to get there.  At Kendall Regional Medical Center the ER doc pretty quickly set me up to have the venogram as soon as the vascular surgeon & interventive-radiology suite were ready to squeeze me in.  That finally happened around noon, and so by 1:30 I was in the recovery area for an hour’s (somewhat neglected) recovery, while everyone who you’d think might be taking a bit of care of me was instead trying to figure out whether I was going to be admitted or discharged or sent back to the ER or what.  Apparently they never send people back to the ER from recovery.  But in this case that was what the ER had planned so that was what happened.  Until then I thought I’d be admitted for a night of de-clotting and observation.

So, back to the ER.  When the ER doc came along around 3:00 he said I was getting discharged after getting started with a blood thinner (Lovenox, which is low-molecular weight heparin aka LMWH).  He went off to call my oncologist to confirm that it was ok with chemo and give him the scoop.  I called Eric and said “come get me.”  My main concerns were: 1) can I eat now, finally? and 2) can I put on my own clothes instead of this ridiculously large gown?  Somehow I didn’t get to ask these questions because there were so many other things to find out, decide, and do whenever there was a health-care provider in my room.  Eventually my nice nurse José came with the drugs.  He gave me one half-dose of Lovenox to show me how to do it, then I did the other half dose.  It is a liquid that is injected subcutaneously (twice a day, in the belly fat).  Oh joy. Luckily I have learned how to give injections before…just not on myself.

By then I head read my discharge paperwork and noted that I was officially discharged at 3:30 pm.  Since it was now 4:30 or so, I figured that yes, I could eat.  So I ate two oranges.  Then José brought me some iced tea and an ice-cream bar.  I lounged around Skyping with my mom for a while, then decided the food was ok but the service wasn’t so great and went out to the ER waiting room to wait for Eric.

At 6 Eric and I found each other and went to the pharmacy and then got some food and then drove back to Marathon (about two hours).  Whew.

The next day, Friday, we spent most of the afternoon at Bahia Honda State Park near Marathon, which was pretty nice.  Good beach.  Portuguese Man o’ War jellyfish washing up onto the beach, which is dangerous because their tentacles sting very painfully, but they float and bob around on the waves, and are purple and blue with a big inflated part, so they were easy to spot even when only a few inches long.  Eric and I ended up reading on an uncrowded part of the beach and swimming a bit while the kids sat in the car in the parking lot on their devices.  Ah! Vacation!

From there we drove north again, off the Keys, to Homestead (SW of Miami), where we stayed in an agricultural neighborhood at a guest apartment attached to a house in the middle of an avocado grove.  Tranquil.  In the morning we eventually packed up and took off for a driving tour of one part of the Everglades, which we entered only 20 minutes from where we stayed the night.  We drove and stopped and went on nature walks on boardwalks and saw some cool stuff.  Finally picnicked and drove out and away to Fort Lauderdale to the airport, and eventually flew home.

I am feeling rather tired and beat-up.  I’m pretty sure I’ll be on this blood thinner for many months if not longer, but other than that, am not sure what else is going to change as a result of the DVT.  My left leg has been really bothering me for weeks (months?) in a sciatica-like way that is not apparently sciatica, and that was pretty bad on vacation.  There are good days and bad days but overall it is getting worse.  I have been trying to get it better with acupuncture, massage, chiropractic, etc..  Now I can’t take ibuprofen to help with the pain because of the blood thinner.  And my left armpit and shoulder have been mysteriously hurting me since Thanksgiving when I walk, so I hope that turns out to be clot-related and will eventually get better.

The Tylenol I took for a few days stressed my liver (as Tylenol does…) so when I went in for chemo yesterday, my liver enzymes were high and my oncologist said to come back Friday to see if they have gone down enough for chemo. I hate disrupting the chemo schedule.  When I do, everything goes wonky in the rest of my life’s schedule!  Plus it makes me very nervous to skip weeks of chemo.

Instead of chemo we had a long discussion of the DVT, the shoulder pain, the leg pain, and pain relief options.  I went off for a leg ultrasound (to rule out more DVTs) and a femur X-ray (to rule out lesions in the bone) and I will get a full-body bone scan as well because, well, it’s been 16 months since my last one.  And Friday I have an appointment with a vascular surgeon to talk about the DVT and follow-up, precautions, etc etc. Yeesh!

This update goes on an on but trust me, I am leaving out some non-essential but confusion-increasing twists and turns.

I had my 3-month CT scan February 10th.  At an appointment to discuss the results two days later, my oncologist said that the radiologist’s report said the metastasis in my lung had grown a bit (one dimension had been holding steady at 1.4 cm and is now 1.9 cm), which meant it was becoming resistant to the chemotherapy.  We discussed options.  I had a “we knew this day would come” sinking feeling.  Is it all going to be harder and more confusing from here onward?  Besides waiting for a more clear signal of growth, or switching chemotherapy, the other option was to use stereotactic radiosurgery on the lung met.  If the rest of me was still responding well to the Eribulin, but this lung met had developed resistance, we could kill it off and I could go on my merry way with Eribulin for longer.  That seemed like a bearable plan.

But he called me later in the day to say the latest version of the CT report–not the preliminary report he had had in the morning–actually said the lung met was stable.  Whaa?  Later he reviewed the images himself with a radiologist and told me “you could go either way” because something is measuring bigger, but is it tumor or is it associated collapsed lung tissue?  No one can quite tell.  So that was nice news.  But we stuck with our plan to have me talk to the radiation oncologist (the brain-zapper) because if the lung met had grown, we could zap it. The idea of getting that lung met off the list definitely had some appeal.

Then on Friday the 13th (oh yay) I had a follow-up brain MRI to check results of the January zapping.  (“What? I am having a brain MRI to check for brain tumors and you want me to have it on Friday the THIRTEENTH?”)  But I did.

On the 18th we met with the radiation oncologist.  The MRI showed good response to the zapping of two mets (yay) but one tiny little worrisome dot in the brainstem is still there.  We wanted it to disappear, which it didn’t.  But at least it’s not any bigger. Good news, bad news, good news.  Next, more bad news:  he spotted another little tiny stable dot somewhere else.  “This is most likely a tumor also,” he said nonchalantly.  Great.  Hey buddy, this is your something-thousandth brain met so it’s all in a day’s work to you, but to me, hey, this is only my…counts on fingers…8th or 9th!  So show some respect.  (Dot #2 was on the November MRI but wasn’t noted then, and it wasn’t on earlier MRIs.  So yeah, most likely a tumor, but again–good news–not any bigger for 3 months).

But the real kicker was when he reviewed the CT scan with us.  I like this guy because he calls up all the images on the computer and lets us look, and fiddles with them and compares them, and we get to see how he does it.  It’s kind of mind-blowing to realize that though they use high-tech machinery and chemicals and stuff and measure things by clicking with the mouse, in the end, they are just LOOKING AT PICTURES and deciding whether deadly growths have grown or not.

So anyway, he calls up the February CT scan and the November CT scan and we compare them.  He does some measuring and doesn’t come to any conclusions that way, but we all agree that the met looks “fuller” or “more plump” or “filling in” compared to how it looked in November, despite maybe measuring almost the same in its extent.  This met is like a little raisin with a couple of tentacles, and the tentacles are the collapsed lung tissue (or atelectasis).  So the open question is: is the fullness caused by tumor cells growing out from the main tumor along the tentacles, or is it just more collapsed lung developing at the margin of the tumor?  The zapper is not sure, but thinks it is probably tumor growth.  Which means we should zap it, because that means the Eribulin is not working on that tumor anymore.  If we zap it successfully, then I can stay on Eribulin because it is working everywhere else it is expected to work (meaning, not in the brain but in the body).

But that’s not the kicker.  Because next he says, contemplating the scans on the computer, “If I were betting, though, I would bet that this is a primary lung cancer, not a breast-cancer met. It looks like one.  Breast-cancer mets in the lungs are not made of lung tissue–they’re a foreign type of tissue, so they grow in a ball and push the lung tissue outward.  Not in a blob with tentacles like this.” (Well maybe he didn’t say “blob with tentacles” but that’s what he meant.)  “Have you ever smoked?”

WHAT?????  So I tell him a) I have never smoked a single cigarette, and b) what are the chances that I would be discovered to have stage IV breast cancer and primary lung cancer at the same time?  Come on, now.  He agrees that it seems unlikely given the circumstances, but still….it sure does look like a stage I lung cancer to him.

“Stage one!” I say. “That’s the first good thing you’ve said all day.”

We determine that yes, I had the sternum met biopsied and that one was definitely breast cancer.  And no, I didn’t have the lung met biopsied.  So do I want to biopsy it now?  Because if it’s lung cancer the standard of care is to do surgery, remove the upper lobe of the lung where the tumor is located, and take out the lymph nodes nearby.  “What about this situation is standard?” I ask incredulously.  He takes my point. He says that though lung surgeons would certainly want to operate, surgery might rev up the metastasis in my body and that would be bad. So he would suggest zapping it instead, the way they do when someone with lung cancer is too frail to withstand surgery.  The “control rate” is not proven to be quite as good as surgery, but the side effects are less frequent and less severe.

The zapping is a bit more complicated than the brain zapping–five treatments over two and a half weeks, and they have to restrict my breathing some so the lung doesn’t move during treatment, and there is a risk of rib damage from the edge of the radiation field.  But basically, a low risk of side effects, and I still have a whole right lung (which I dunno, I feel I need to keep if possible).  Besides, if he only gets to zap frail people, I probably am less at risk of side effects than them, right? Being not frail.

“So,” I sum up after a while, “whichever it is, we would zap it. So therefore why would I biopsy it? A biopsy doesn’t give me information that changes how I would proceed.”

Though he sheepishly says, “Just to know?” he agrees that there is not a strong case for biopsy.  He says he’ll review the CT scans with a chest radiologist and argue with the lung surgeons over me.  “They’ll be mad at me,” he says.  I say this situation would make a great Grand Rounds presentation about uncertainty and patient choice so he must invite me when he presents it.

Whew.  What a roller-coaster.  We leave and I begin trying to figure out how lung-zapping is going to fit into my chemo schedule and my non-cancer-related life in the next month or so.

Then the next day my oncologist calls, having gotten the latest update from the radiation oncologist.  The consulting chest radiologist (whom the oncologist thinks highly of) also says it looks like a primary lung cancer, but says he doesn’t think it’s actually growing.  And when I inquire, my oncologist says sure, he’s seen breast mets look like this before.  He agrees that the lung-cancer hypothesis is a little hard to swallow given the circumstances.  So, given all the opinions, he comes down strongly in favor of this plan: no biopsy, for goodness’ sakes no lung surgery, and right now no zapping, either–just wait and see what the next CT scan says in three months.

And that’s where we are.  At least until the next phone call.

I greatly enjoyed perusing this illustration from a Scientific American article (thanks, Paul): “How Oncolytic Viruses Destroy Tumors”

Ahhhhh wouldn’t that be great?

An article right up my alley by Susan Gubar in the New York Times.

http://www.timesunion.com/news/article/CDPH-cancer-doctors-reach-deal-6040213.php

What a relief.

It’s Monday and Eric and I spent an amazing weekend in New York City, which we never do. (This was maybe the second time going to NYC for fun since we moved to New York State in 2002–just haven’t wanted to, mostly.)  I was pretty low-energy on Friday, when we went, but had plenty of energy on Saturday.  We came home Sunday morning.  We took the train along the Hudson, which is so beautiful!  The ice was amazing.

Today I got back to doing interval exercise (cardio, aerobic) after more than a week off, though I did do some walking in the meantime.

In the city we saw the Henri Matisse Cut-Outs special exhibit at MoMA, went to a play, went to a clothing store I wanted to visit where I found a new kind of clothes to buy, and ate Ethiopian food and Vietnamese food and famous vegan food-truck  food.  We stayed with a friend (thanks, Mercer!) and took the subway a lot.  But also did as much walking as energy allowed.  We took a fictional history tour of the High Line and its neighborhood, run by Story Tour, and wandered around in Times Square a bit to see how it has changed.  We planned just the right amount and let whim and serendipity guide us the rest of the time.

Before the weekend I spent time feeling fatigued and a bit loopy due to the brain zap & the just-in-case anti-seizure medication.  But we still managed to get household things done and do some good Online Writing Workshop work.  Chemo started up again uneventfully on Thursday (also this coming Thursday).  And that’s the news.

The zap on Thursday was much quicker and easier than last January, and now I’m feeling low-energy (as expected) and fuzzy in the brain (also expected, due to temporary anti-seizure meds I have to take just in case for a week).  My mom is visiting to help out and I am spending much time on the couch in front of the warm masonry heater!  Chemo starts again on Thursday. More news later.

One year ago today as I left the house to be zapped, my friend Isa said: “I love that, by about 3pm today, you’ll have a shiny, well, healthy and happy brain.” Once again, I am holding that intention.

Shiny

Well

Healthy

I really resonated with this comment from a reader of a New York Times article about caring for people at the end of life, by Atul Gawande:

But when I faced incurable life threatening diseases myself I finally learned the "meaning" of life and death. Stuff happens and we stumble along trying to make the best of things before we all die by the unknown means natural/ supernatural destiny has planned for us. The advantage and insight provided by a near death experience or life-threatening illness is context and perspective about the chance random nature of our mortality.

The problem is, in our culture, we are all sailing along on the Good Ship Denial. Death will come many, many moons from now when we are very old, tired and deep in sleep. Getting a terminal diagnosis is so rattling partly, I think, because we are shocked right back into reality. Suddenly we have entered the land of the dying, where no hope resides.

But here’s the kicker. We are all dying as much as we are living. There is no “land of the dying” any more than there is a land of the living. We are all constantly doing both. The moment you are born, you begin to die.

My point is, we must live with this wisdom, not in fear of it. If you weren’t afraid to be born, then you should not be afraid to die. Remember, cancer occurs because cells won’t die when they should. This all might sound silly to some of you. Whereas I find it of great comfort.

My time as a hospice volunteer taught me that you must live every, single moment fully and humbly. Never take one second for granted. And don’t fear the most natural thing in the world. Death is just death. Break down your fear. Is it of being in pain? Is it of being separated from loved ones? Is it the unknown? Face these issues, bravely and squarely, and you will find a great measure of peace.

Dying well does not come easily. But we all owe it to ourselves to learn from those who have gone down this journey and did it right. Dr. McKinley did it right. I hope I do too.

And finally, a passage from the Jewish *Gates of Prayer *that was read at my Uncle Howard’s funeral gathering quite a few years ago, that I really liked:

All things pass; all that lives must die All that we prize is but lent to us; and the time comes when we must surrender it. We are travelers on the same road that leads to the same end.

(Today’s pre-zap set-up procedure went fine and tomorrow afternoon is the Real Thing.  Should only be a bit over an hour for the procedure itself, starting at 1:30. I get to bring my own CDs.)

It’s my chemo-versary today: one year ago today I started chemo.  So here I am, no sicker.  Which is apparently a major triumph “in the metastatic breast cancer setting.”  Because even knowing that the statistics are about 5 years behind current treatment options,  and even knowing that statistics don’t really apply to any one individual, the MBC survival curve seems dauntingly grim: the studies and articles I am reading all say things like “a median survival from the time of developing metastases rarely exceeding one year.”

So here I am in month 14, celebrating a year of effective chemotherapy.  I think I’m on cycle 17. Go, Eribulin. Go, me.

Yes, I have brain mets again…small wrinkle in the plan, it must be admitted. The schedule is to zap them with SRS on Thursday, coincidentally one year to the day after my first zapping procedure.  There are only two mets this time and they are smaller than a year ago and both are in easy-to-target spots, so I assume the procedure will be lots quicker and easier.  Then a week after that, back to chemo again. This chemo doesn’t cross the blood-brain barrier (as far as researchers know so far) so having new brain mets doesn’t mean it’s not working everywhere it reaches.

The two metastases that chemo does reach are holding steady–not growing, not shrinking.  I wish I could see them.  Why is there no fancy 4-D ultrasound for anything but in-utero babies? I could use a good visual. There might be a tiny second bone met in one lower-back vertebra or it could be some other little blip seen via the miracle of MRI–so I’m not worrying about that.  And most important: no new metastases in any organs.  These mets I’m apparently stuck with for now are not affecting me.  Very well behaved.

For an extensive review of how things are, triggered by the chemo-versary thing, keep reading below these great pictures!

And here are pictures of a couple other important people!

My hair is curly.  Though it is thinning a lot (since November?) and right now looks a little pitiful, I am feeling lucky to have gotten hair back at all after the first few months of chemo (it came out about a month after I started, but grew back as soon as my Eribulin dose was reduced in April).  Why it is thinning so much is a mystery.  Nothing has changed…is it a cumulative build-up of something toxic in the hair follicles? Or the natural life cycle of hairs, which are all unusually synchronized because they all grew from nothing in early May? Or…?  Brain zapping may make patches of it fall out again soon anyway, so we’ll see what will make me feel the least pitiful: shaving it all off (brrr, in winter)? Covering the thinnest parts with a bandanna or a hat? Or just embracing the humbling experience–otherwise unattainable for the 51%–of male-pattern baldness? Um, no, probably not that last option.

Hmm, much of navigating the having of cancer, for me, seems to be about figuring out what will make me feel the least pitiful.  (In fact the worst thing about nausea & vomiting caused by chemo–which I don’t have this time around, so far! at all!–is how pitiful it made me feel.)  The realm of hair contains, apparently, much potential for pitifulness.

I definitely have fewer eyebrows and eyelashes than I did a year ago.  A minimal number of eyelashes, probably so few that mascara would just accentuate the weirdness, and besides I have never liked the feeling of gunk on my lashes.  My eyebrows need help because on one side I have an eyebrow that stops halfway along, almost, and on the other, 2/3 of the way along.  Luckily I started out long ago with really thick eyebrows, which chemo in 2006 thinned out some, but I still had some to spare a year ago.  SRS mask-making accidentally ripped some of them out (like waxing?) and then by summer I had figured out (with help and advice) a “prosthetic eyebrow” technique using a brow pencil and stuff that is basically brow mascara.  Is it good luck that the current “eyebrow fashion” is very thin, very fakey eyebrows? Mine, prosthetically enhanced, still look more like mine (messy, thicker).

Oh, there I go about hair again.

I am in better shape that I was a year ago, in some ways, due to interval training, jogging, and some strength training.  I’ve done all this with the help and company of various relatives and friends at QIVC–which means we’re all getting healthier, not just me! That’s fun.  It also gives some of us a bit of social interaction daily in these cold indoor-oriented winter days.  I’m grateful to everyone who has jumped on the exercise bandwagon with me, especially my almost-niece Carolyn, who agreed to be my personal trainer and get me doing all this stuff.  (It was my trip to the Block Center in late July that got me started on Lots More Exercise.)

But I also am at maybe 80-90% of my old physical energy and stamina for normal life, it feels like, and am frequently achy and stiff.  Plus I keep hurting my shoulders by doing nothing in particular beyond some pushups, and then mysterious things like sciatic pain show up and stay for a few weeks.  More importantly, it is harder lately to get my brain to focus in on anything complicated. I am very distractible.  Chemo brain? Or just lots of distracting aspects of my current life?

I take a lot more supplements now, after a lot of research on each of them. I’ve been getting IV Vitamin C steadily since May, and acupuncture as well. And I eat more kale, broccoli, mushrooms, and salmon. (Here is the best cancer-fighting meal ever: Salmon sashimi, seaweed salad, green tea, and shiitake mushrooms.  I guess you could add some grilled broccoli with miso sauce if you had room.)

All summer our garden produced a bounty of kale (enough for us to give lots away, too: we had 50 plants!) and I developed my kale and fruit smoothie: kale, lime juice, a bit of OJ, a bit of kefir (like yogurt), banana, mango, pineapple, flax oil, and glutamine powder.  Will & Jess & Eric like to have some too.  I spend a lot more time on my weird foods than I did a year ago–besides the daily smoothie, I also drink a green drink full of broccoli sprout powder etc. (ick) and sometimes make seaweed salad with dulse & Japanese seasoned salt and vinegar.  When I travel I have that with breakfast.  I am still struggling to avoid meat more often, because I like it so much.  The whole family has cut down on dairy products but good cheese is still too hard to resist.  We now buy a lot of oat milk, hazelnut milk, and almond milk and I make my own kefir instead of buying yogurt.  When I’m stressed and feeling pitiful I still want candy.  But mostly I just indulge sometimes in 80% cacao dark chocolate.

So that’s the summary of now vs. January 2014.  The coming week is pretty full with appointments and the rest of life, but I will plan to post something after my brain has been zapped again and I have thus developed a new superpower. Wonder what it will be? Nominations welcome.

Finally heard yesterday from the radiation oncologist who ordered my follow-up MRI.  For those of you keeping count, the one questionable maybe-tumor has not changed at all and therefore his hunch was right–it’s scarring, not a met. Both actual tumors have grown (they are both around 5mm now…didn’t they get my message to be indolent?) and are a good size to target, and his gut feeling was to just get the zapping done “next week” rather than wait until the end of the month.  Even though by the end of the month if they kept growing they’d be 7-8mm which is just as curable.  But hey, gut feelings.

So we’re waiting for insurance approval and if that comes through very amazingly fast, my first planning appointment for the zapping procedure will be Friday, and the procedure itself will likely be a week from Friday, or maybe Thursday.  Chemo will be put off for a week so I don’t have chemo and zapping in the same week.  This messes up my chemo schedule, which felt threatening to my March vacation plans (to go away during my “off” week), but my oncologist said family vacations were more important than one week’s change in the chemo schedule so we would just put off chemo that week in March as well.

So I wondered, is there more wiggle room in the chemo dosing schedule than I think? Because that would mean delaying chemo a week at Thanksgiving, a week in January, and a week in March (basically every other month).  I thought if the chemo is working we shouldn’t risk taking that much time “off.”  He said if a week here and there over six months made it stop working, it was close to ceasing to work anyway.  Gee, thanks for reminding me about that eventuality…

Meanwhile I now believe I can, indeed, cure cancer with my brain!  Here’s the story.  I was having really bad sciatic pain, kind of out of the blue.  So that earned me a lumbar-spine MRI to make sure no new metastasis was pressing on the sciatic nerve in my spine.  The MRI showed “two very small spots” in my vertebrae that the oncologist, reviewing them with me over the phone, said were of unknown cause but “given your history” were probably metastatic spread, just too small to show up on the latest surveillance CT scan.  Or they could be benign–they certainly weren’t the cause of any sciatic-nerve impingement.  So we wouldn’t worry about them, but they were probably more bone mets.  OK, so now I have two more mets.

Me: “Did you check my April 2013 spine MRI to see if they were there then? Remember, when you ordered the MRI I said we could compare it to that one if we had questions.”

Oncologist: “Oh, yeah, forgot about that.  Let me check….hmmmm…pulling it up now… Yup! One was there before–‘benign hemangioma,’ it says, same vertebra, same location, size.  That’s the bigger one, 5 mm.  Same as before.  So never mind about that one, it’s nothing.”

Me, thinking: So I just cured myself of 1 out of 2 metastases with the power of my BRAIN! Go, brain!

Then to even things out, here is this interchange from yesterday:

Oncologist, reviewing MRI results with me over the phone, with report hot off the press from radiologist: “So the cerebellar lesion is nothing, just scarring, and the parietal lesion has grown to 5mm, which is a good size to target now.  So we can treat it next week, if you want.”

Me: “What about the other met, the left occipital one?”

Oncologist: “What other met?”

Me: “The one in the left occipital lobe. It was in the November MRI report.  There were three, but one was questionable.  You just told me about two of the three. One is scarring, one is real and grew; what about the other one?”

Oncologist: “It wasn’t in the radiologist’s report…let me look at the images…”

Me:

Oncologist: “Oh, yes, there it is.  Yes, that one grew too.  We can target that one as well now.  Don’t know why the radiologist reading the MRI missed it.”

Me: “Well THAT certainly doesn’t fill me with CONFIDENCE!”

Me, thinking:* Whoops, I just gave myself another brain met with the power of my BRAIN.*

I guess maybe some of you might be wanting to know that my follow-up MRI to check in on my latest TINY TEENY MINUSCULE WEAK FEEBLE brain mets is on December 29 so early in the AM that I don’t even want to think about it.