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!

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.

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 Jesse, 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.)

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 Jesse is now (as of this afternoon) officially enrolled for the fall.  Jesse 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 Jesse 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 Jesse 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.

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 & Jesse 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.

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.