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

Happy

but needing some really good rest.

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.

A NYT reader named Patty Dixon said this in response to an article about a doctor who chose palliative care over last-ditch chemotherapy and surgery, and died at home with family and friends:

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.

I can’t remember who said this one, but it was in a podcast about moving through the grief of living on after the death of a loved one: “I kept going, and meaning took hold in unexpected places.”

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.

And finally, a quote from me: “I would cry more often if it wasn’t for all the snot.”

(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!

Though I am technically a tiny bit anemic lately, my red blood cell counts are still reasonable (always so far in the normal range, even if lately lurking at the very bottom dregs of normal); I don’t know what they’re up to (down to) on my weeks off because I don’t get tested then, but I think I can feel my mild anemia sometimes then when exercising.  My white blood cells are surviving, too–always “normal” except one week when they were low.  I don’t think I’ve gotten sick more often than usual, or had a cold for longer than usual.  There is a slow downward drift to these numbers but I’m not near needing to do anything about them.  (Anything: delay chemo, get blood-count-increasing shots, get transfusions, stop chemo.)

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 & Jesse & 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: [hopes it has VANISHED miraculously…waits…]

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.

We are almost to the solstice and for most of December so far I have felt somewhat unmoored.  It’s been hard to focus on what I think of as “work,” though holiday projects are giving me a good excuse this week at least.  I have had lots of unscheduled time and have managed to feel, at the end of most days, as if I have squandered most of it.  Projects I am in the middle of have been hanging fire since sometime in November waiting for me to find my way back to them.  Or fight my way back to them, or wade (through dozens of smaller immediate tasks swarming around my figurative legs).  I have kind of felt as if I’ve been drifting farther and farther from that grounded place where I can assess my tasks, prioritize, tackle ’em, and end up having done what I set out to do, on a daily or weekly basis.

Part of the muddle has been last-minute notification of big health-insurance changes.  Our access as a small business to a very good insurance plan from our very good local non-profit health-insurance company (CDPHP) has made the insurance part of this past year very easy.  Now that access is going away because of a change in the law about which types of small business can access group insurance plans, and our broker did not tell us about the change until early December (though the change to the law was made a year ago…we are switching brokers).

Then the next day New York Oncology Hematology, where I see my oncologist and get chemo, sent us a letter saying they are not signing a new contract with CDPHP because of a dispute over reimbursement fees, and as of February 1 any NYOH charges will not be covered by CDPHP.  Whoah!  Depth-charge explodes in the already roiling waters of the Harris-Braun health-insurance pond.  (News coverage of the pending breakup)

Figuring out what to do about all this, and then getting started doing it, took us most of our attention last week.  Eric did most of the legwork, and made an amazing plan-comparison spreadsheet, for all which I am just so grateful.  The NYOH office staff gave us a lot of their time to a) listen to us complain about their handling of the situation and their truthfulness to patients and b) help us figure out how to find out information from insurers that would help us make a plan.  We talked to both companies, and both say they are still working to resolve the issue.  Many voice-mail prompts were followed in vain and much on-hold music was listened to.  Now we have a plan for moving forward, but there is still a fair amount to do, and if NYOH and CDPHP don’t settle this before mid-January, we will have to switch to a different insurer.

Changing health-insurance companies has a lot of down sides–most importantly, we can’t get any assurance that the other insurer will cover my chemo drug (since it is slightly off-label use).  Second-most importantly, we have had a plan with coverage extending to a national network that includes many fancy cancer places like Dana-Farber and Sloan Kettering, and for now we don’t have that anymore, and we may not be able to get that with another insurer.  Yikes!

Through this foggy time I have managed to pretty much keep up with exercise, both walks and cardio/interval training, doing both most days.  I have company most days, which is great and keeps me going.  The weather means we are doing more exercise indoors.  I’m also keeping up with green veggies, my various I’ll-bet-on-them-under-the-circumstances supplements, and of course chemo, IV vitamin C, and acupuncture.  My last round of chemo was easier than usual, maybe because I got an extra week off beforehand for Thanksgiving travel.  (We went to Houston for Thanksgiving with family, which was really nice, and I ran 3 miles for the first time in my life, with my sister!)

Met with the radiation oncologist this afternoon, after chemo yesterday and  IV Vitamin C and acupuncture this morning.  This week I’ve felt less icky than usual; maybe that extra week off for Thanksgiving really made a difference.

So the radiation oncologist said first of all, he doesn’t think 1 of the 3 spots seen on the 11/20 MRI is actually a tumor, and the other two are–get this–too small to treat without risking missing them (3mm & 4mm).  The reason for this has to do with the precision of the machine’s radiation beams vs. the inescapable movement of the brain as blood pulses through it.  The size of the margins of healthy tissue around each tumor that they zap along with the tumor also comes into play…basically to get 99% treatment response rate, they need a bigger target.

Hah.  It was kind of bizarre to be sitting there with the radiation oncologist listening to him almost laughingly dismiss two cancerous growths inside my brain as “too small.”

So I’ll sit tight until the end of December, get another MRI then, and unless the spots have grown quite rapidly, we’ll schedule the zapping for the end of January, during my week off from chemo.  If they have grown rapidly, we’ll do the zapping in early January.  And I guess if they haven’t grown much at all, we might wait until late February…because they need to be BIGGER.  How weird.

So this is good news–especially the downgrading of one of the spots to probably-not-a-tumor–and I just have to adjust to the Not Having a Solid Plan thing…again…as usual.  I have some births I’m supposed to assist at coming up in the next two months and I hope I get to them ALL.

Note to brain: despite my desire to have a plan and get things over with, I want you to know that I would be very happy to have an MRI in 4 weeks that showed “not enough” growth.  So don’t knock yourselves out in there in the interim.

If you don’t get the joke above after thinking about it for a bit, or you have ever just wondered what an MRI sounds like, listen to a bit of this video, which also shows the equipment needed for a brain MRI:  Brain MRI sounds & sights (first 50 seconds should do).  All metal needs to be removed because of the strong magnetic fields used.

More of these in my immediate future, for sure.

I spent the time between my CT scan and MRI Thursday AM and our meeting with my oncologist Friday AM trying my hardest to think of a descriptive phrase for that time period in ongoing cancer treatment or follow-up, because It’s a Thing.  It’s the scan-results interval (SRI?). It’s the DFWP, the dread-filled waiting period.  It is  the time when I worry the most, though that makes no sense.  Whatever the cancer is doing, it was doing it before the scans…it’s not like the scans determine what is going on.  And yet.  I am pretty good at Not Thinking About It before the MRI & CT appointments; very good at not worrying during the scans themselves; and then a gray overcast hovers over my life until our appointment with the oncologist a day or two later.

Like “chemo brain,” this aspect of the cancer lifestyle deserves a catchy name so we can talk about it.  Suggestions welcome.

So what is going on, the unvarnished update: the CT scan showed no changes, but the MRI showed 3 new 4-5 mm “spots” in my brain.

Now for the varnish: the CT scan is very good news because it means the chemo is still working (10 months & counting): the tumors are not growing, and no new ones have appeared anywhere.  So that is really good.  And it buys me 3 more months of the chemo regimen I am used to (until the next scans).  The new brain lesions are a) very small, and causing no swelling or anything at all; b) apparently not in tricky places; and c) not in the same places as last winter’s.  In other words, they are a new mini-crop, not the old ones growing back.  This means it’s very likely that they can be “zapped” with another treatment of stereotactic radiosurgery (SRS), like the January zapping but less extensive.

My oncologist said he likes to look at it as: “we are in a better place right now than we were in January.”  (January, for those of you tuning in late: 3 spots, one big…no, 4…n0, 5 spots, one big and one tiny but in a location hard to reach safely; lung and bone tumors that might or might not respond to the chemotherapy we had just begun to try; no evidence that the brain lesions would respond to SRS; no good evidence for the rate of growth of the cancer.)  His “better place” is defined by: smaller and fewer brain lesions this time around; we know SRS worked on the others so we can be pretty sure it will work on these; it took a while for anything new to show up in my brain so the rate of growth is not devastatingly fast; and chemo has worked well and is continuing to work well outside the brain (no one expected it to get into the brain), meaning no new tumors, no growth of the existing tumors, and all of this “holding steady” is happening in a state in which I have no symptoms from the cancer.  Peachy!  Shiny.  Varnish!

I said “But compared to August’s results, well, I’ll take August.”  He said sure but don’t compare the lows to the highs; he compares the highs to the highs and the lows to the lows.  Doubtful look from me elicited “That’s how I do it, and I’m sticking to it.” Okay then, if that’s how you keep doing this job week after week, year after year, patient after patient! Go for it.

So the paint-stripper version: no miracle is happening. All the things I’m doing besides chemo to make my body less hospitable to cancer are not working 100%.  I’ll never know whether that means I should be doing more of those things, or whether they are having no real effect at all.  Am I using my brain too much?  Maybe I need more episodes of “Bones” and fewer abstracts of Phase II studies about copper depletion therapy’s effects on metastatic TNBC.  Meanwhile my schedule for December is up in the air while I experience another Cancer Interv-hell: so far all of this is from my regular 3-month surveillance MRI and the oncologist’s best guesses, and I haven’t talked to the intervention radiologist yet, the one who does the SRS. So nothing is for sure yet, though Eric and I are both sure that we floated this scenario past the radiologist in January and he said SRS could be repeated.  Perhaps he will call my cell phone to discuss my brain mets and penetrating my head with radiation while I try to choose organic breakfast cereals in the aisle of a Houston grocery store (where we are going for Thanksgiving–Houston, not specifically the store).  Hate that.

“Cancer Interv-hell”…what do you think?

And not because of chemo-brain…just because there have been so many of them.

Which is a good thing–the chemo (2 weeks on, 1 week off, since January) has been keeping the cancer from growing.  I get scanned on the 19th to find out (on the 21st) if it continues to work.  A good result on scans (body CT and brain MRI) = 3 more months of the very doable status quo.

Meanwhile I’m continuing to try to adjust my internal “terrain” to be less cancer-friendly.  This means all that daily exercise, veggies & “turbo greens” powder in hold-the-nose-and-drink form, various supplements to hold neuropathy in check, minimizing dairy and meat, plus taking zinc, B vitamins, vitamin D, fish oil, calcium, mushroom extract, green tea extract, etc. every time I turn around.  I even gave in and got one of those PILL ORGANIZERS!  I’m still trying to walk the line between what the Block Center recommends (major antioxidants) and what my oncologist will have a complete fit about (major antioxidants).

There is no evidence that antioxidants like the ones I want to take are harmful while taking chemo (radiation is different though).  There is a bunch of aggregated evidence that some antioxidants can be used with some chemo regimens, and either don’t interfere or actually potentiate the chemo.  There is also some decent evidence that those antioxidants help with side effects of chemo. However, there is no solid evidence that the exact antioxidants I want to take are helpful while taking my exact chemo drug.  So it’s all a bit of a crapshoot.  I understand why mainstream oncologists don’t feel they can recommend things to patients without gold-standard, applicable evidence, but what I’ve come to see is that doesn’t mean I can’t choose to try things in my own body after becoming reasonably informed.  Especially if experts DO recommend them and have good reasoning behind the recommendations–just not all experts.  I have a team of somewhat competing experts.

Since my last update I attended the Midwives Alliance of North America’s annual conference and had a really good time.  It was in St. Louis and our hotel was right by the Arch–I could see a lot of it from my room.  I gave my 90-minute presentation on length-of-pregnancy research and methods of setting due dates, which was a total blast.  About 40 people attended and were interested for the entire 90 minutes.  I also helped do the annual update on the MANA Division of Research, and I got an award from MANA for my various contributions (to the MANA Stats project) over the last 11 years.  Oh, and MANA’s new poster-presentation prize is apparently named after me, but the conference really doesn’t get enough poster submissions yet.  So if anyone has ideas for how to get more poster presentations at a conference, let me know!  ‘Cause now I feel a bit responsible. 🙂

Fall is coming to a close here in Columbia County and we’re moving into sometimes-dreary early winter.  I enjoyed the long leaf season, though.  Will is enjoying Buxton School (his Williamstown, MA progressive, small boarding high school) and Jesse is struggling somewhat with homeschooling.  We’re looking forward to Thanksgiving in (warm? sunny?) Houston with my mom’s side of the family plus fun friends.  But before that, one more week of chemo/IV vitamin C, and then those scans.