January 18, 2003
Thanks to a team of friends and hospice workers, Mary died quietly last
night at home, encircled by friends, lover, sister, birdsong, dogs and so
It's hard to imagine a world without Mary in it.
It feels lonely writing this update by myself, when this website for the
past 15 ½ months has been such a collaboration. Since Christmas, despite
being on continuous oxygen, Mary's grown weaker, and struggled with
different kinds of pain, and mostly not had the energy to write or read or
It all seems to have come on fast ... but the fact is Mary's been
mustering phenomenal energy for some time now despite her faltering body.
Last week, after consulting with trusted advisors in San Francisco, she
decided to make the trip to Dallas for the next scheduled set of GVAX
vaccinations—a trip that, right up to the moment we left, felt like
trying to get to the moon (including having to organize oxygen all along
the way plus take the risk of being stranded in Dallas if Mary were
unexpectedly hospitalized). We made it safely there and back, but it used
just about everything Mary had ... and there's been little respite since.
I'm walking through this with Mary and doing what needs doing, one day at
a time, but I have to say my heart is just in shards. Like so many of
you, I've never known anyone like Mary—or, as a friend of ours says
laughing and shaking her head, "that amazing ... Maryness!"—and the
nearly 18 years we've been together have been richer in love and laughter
and conversation than I ever dreamed possible.
I watched prayers fall on Mary during this trip to Texas—literally,
strangers reaching out to her after the briefest of conversations and
praying like she was in their church for her comfort and care—and
watched Mary give it right back. And right along with her hope and humor
and courage, she of course had the whole human bundle of fear and sorrow
and frustration: during a long and worrisome wait through an unexpected
diagnostic test in Dallas, Mary told me, "I am so tired of thinking
about cancer. I want to be thinking about poetry, or the Supreme Court.
Or the Giants." (She then proceeded to recite, in full and from memory, a
favorite Emily Dickinson poem.) So much of her energy now is going to the
most basic things: sleep, digestion, juggling pain drugs, trying to eat,
trying to get into a comfortable position.
The only solace I know is the love and company of the people who've been
walking this hard path with us—like the dear friends who came for a
sleepover 12/28 and clambered into bed with Mary and me for laughter and
stories and tears, and then made breakfast.
And of course we are also tremendously grateful ...
I'll continue to print messages out from this site for Mary to read when
she can, and of course will update this page as often as I'm able.
- ... for the steady outpouring of practical support from friends
and loved ones, including grocery runs and dog care and frequent flier
- ... to the doctors and nurses and staff at UCSF who helped Mary get
out of the hospital and back to our own home; and to the UC oncology
team and the Infusion Center staff who flocked around Mary like loving
mother birds to make her comfortable when she went in for care of a blood
clot in her leg;
- ... to the people at Apria medical supplier and United Airlines who
came through so beautifully with oxygen during Mary's trip to Dallas;
- ... to the Baylor staff in Dallas, who vaccinated Mary and were
extraordinarily supportive and kind;
- ... to our beloved couples counselor and acupuncturist who have both
made house-calls to care for us;
- ... to the city employees who've donated hundreds of hours of sick pay
to Mary's Catastrophic Illness account;
- ... for Benny and Melba, and the birds, and their continuing good
health and joyful presence in our days;
- ... for all of you who've sent messages through this site and by phone
and mail and all ways to remind us of your love and support;
- ... for each other.
To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
—Mary Oliver, "In Blackwater Woods"
Tell me, what is it you plan to do
with your one wild and precious life?
—Mary Oliver, "The Summer Day"
Oh my, but a lot can happen in a month.
Mary's received two rounds of the GVAX vaccine by now, and has gone from
feeling much improved to getting weaker and weaker and needing
oxygen. Our best gift this Christmas was not to spend it in a hospital.
- Mary got such a boost from the first set of vaccinations on
November 17, it was as though her immune system said "Aha!" That
week in Texas, even before Mary felt better, we drove 70 miles north in
the middle of the night, away from city lights, and parked in a rural
field and lay on the hood of our car in our parkas in the clear 30-degree
night to watch a fantastic meteor shower. And stopped off for waffles at
5 a.m. on the way back to our hotel, caught a few hours sleep, and went in
to Baylor for blood draws later that morning. For the next week and a
half, Mary dramatically reduced the Tylenol/codeine pills she was taking
for pain in her side and her spirits were good. We learned that Benny's
tumor, though a scarey one, was less aggressive than first thought and he
wouldn't have to go through a second surgery. My brother Rog and his wife
Julie hosted a wonderful Thanksgiving on November 28, where we and
loved ones and family laughed and ate gave thanks for the survival of Mary
and Rog and Benny the dog! What an unbelievable year it's been.
Then, at the beginning of this month, Mary's pain started coming back and
grew stronger, which was discouraging, and her various healers supported
her in getting onto low-dose morphine to handle it. She also started
getting more and more tired, and we attributed this to the vaccine which
kicks the immune system into high gear. But Mary's fatigue started going
way past the expected side-effects of "flu-like symptoms" and
"weakness": occasionally she was having a hard time just standing up and
conversation at the same time. Even though the Dallas research team was
unstintingly kind and encouraging, Mary really dragged her way through the
second (overnight) visit to Baylor on December 12 for another 16
injections; and the Procrit (red blood cell boosting) shots they were
giving her at UCSF didn't seem to be helping. The fatigue wasn't
understand: sometimes Mary felt better, and she enjoyed herself for hours
at the OCC holiday party on December 17—in part I'm sure due
Well, we found out during an appointment at UC on December 23
that Mary's been doing the equivalent of climbing Everest without oxygen.
Her "oxygen saturation" (the thing they measure with the clothespin on
your finger) was dangerously low, but her red blood cells (which carry
oxygen around the body) were not, so it meant her
lungs weren't getting enough oxygen to begin with. She went to the
ER immediately where we spent the the next
12 hours waiting while they did a new CT scan and various doctors and
residents tried to evaluate possible causes, ranging from the
(metastasized) cancer in Mary's lungs to undetected blood clots to side
effects of the GVAX vaccine to some pneumonia-like infection. Our main
goal was to stay as independent as possible and go home with oxygen (and
possibly antibiotics) for Mary, unless there was some condition that could
be addressed only in the hospital.
Because we were lucky and in the hands of good people at UCSF, Mary
did not have to stay hospitalized for several days. She came back home
last night, despite the fact that most of the outside companies handling
home-oxygen setups were on a holiday schedule on December 24 and
taking on any new cases. I can't tell you what a relief it is to be in
our own home! Mary's been using her oxygen continually, and getting
relief, and we're slowly getting our emotional legs under us again in
light of this change. We'll be following up with various experts and
trusted ones to evaluate what's going on and how to proceed.
The best way to know how Mary's doing is to hear her in own words, so
Mary in Dallas, November 10
Hi, to all our friends and loved ones reading this:
We've reached a crucial juncture in our ongoing cancer battle, I
believe. Having had 2 rounds of vaccine therapy in Dallas in November and
December, and scheduled for the 3rd round (of 6 total) in early January, I
am experiencing some changes, some for the better, some for the
worse. The last week or more I suffered great weakness and loss
of/inability to hold onto oxygen. After a rough ride including
hospitalization 12/23-12/24, and thanks most of all to Maureen (and to
some doctors and nurses at UC hospital who understood our resolve to get a
home oxygen supply get up on a holiday, with thanks also to Walter and
Apria medical supplier), we made it home on 12/24 at 5 p.m.
Being on an oxygen "tether" (yes, Benny and Melba, I understand your
frustation with leashes a bit better now), is hard. It's also a big
I am "hanging in", feeling very weak and tired, grounded in the realities,
and also hopeful and faithful.
This group of December holidays (we celebrate all of them, really) brought
some sweet blessings, including:
Thank you, everyone, and Happy Whatever-You-Are-Celebrating!
- Maureen and my dear sister Helen, with whom I've grown closer and for
whom I've grown more appreciative during cancer, helped me get through
some hard hours at UC yesterday. Some other friends gave us wonderful
company and love, too, during that adventure.
- The UCSF nurses rescued a favorite pillow and pillowcase that we left
behind and that they almost incinerated (sometimes little things can feel
- Our dear friends Reneé and Gaylene visited us at home today
talk, real tears, and real laughter (as well as lots of dog-hugging).
- Maureen's love for me remains the strongest strand in the
weaving/hammock I lie in safely. All your strands hold me up and continue
to remind me that I'm provided for and loved.
2003, full of blessings, and a Giant Prayer for Peace.
Mary has started receiving the GVAX vaccine (very bravely sitting still
for 16 shots, 8 in each arm) and appears to be tolerating it quite
well. We'll write more about this later.
We were so frustrated and unbelieving and sad to learn, just before the
trip to Dallas, that our just-turned-8-year-old dog Benny had a type of
cancer on his leg: the little bare spot on his thigh that we'd noticed
last month turned out to be a mast cell tumor.
Benny had surgery, and came home to recuperate with a big ole incision in
his thigh. Friends—no, angels!—who came by and stayed at the
house to take care of Benny, and look after Melba, made it possible for us
both to travel as we planned.
We'll get the pathology results on Benny's tumor shortly (we decided to
wait until Mary's medical visits in Dallas are done). Meanwhile, right
along side my gratitude and great hope that help is on the way for Mary, I
am furious that our dear Benny Boy—who has been a comfort to us and
daily reminder of pure resilience and joy—is also threatened by
cancer. We lost our first dog Eureka to cancer, too.
As our friends and the activists at Breast
Cancer Action say, "Cancer Sucks!"
More great news!!!
At the end of her visit to Dallas (Mary Crowley Research Center at Baylor
University) Mary was accepted into the pancreatic cancer vaccine trial,
and will return to receive her first set of shots on November 18. We were
both very impressed by the warmth and skill of the medical team at Baylor,
and felt very welcomed there.
We'll be updating you with details of what all this means shortly.
Meanwhile, know we feel great relief and gratitude for the opportunity to
try the vaccine approach, which tries to kick-start the immune system into
recognizing and combatting cancer. And unlike chemotherapy, the
side-effects (erhm, effects) are reported to be pretty bearable.
Thanks again for all your support!
Hi, everyone! So this is my brief "share" for here and now:
I'm doing well, all in all. I learned yesterday that I have a reasonably
good chance (much better than the odds of surviving to this point, if you
believe in "odds"—I reserve my opinion) of getting into an immune
(vaccine) therapy trial somewhere in the U.S. during the next 4-8
weeks. (There's a shortage of the vaccine). So the goal is to be strong
and well and ready for that experience, as well as to live each day to its
fullest and ripest.
There is clinical evidence of cancer in my lungs as well as my
liver. Mostly—overall—I am not in great physical
pain. However, the big challenge
is dealing with fear and dread, of course. On that challenge, I am making
steady progress, with the help of my H.P., all the love in my life
(including yours), my healing angels (both human and canine and,
naturally, all the birds) and by taking risks. I am getting a new
psychotherapist (after years of not being in therapy, thinking that after
all those years I did go, I had graduated!), taking care of my
not-as-vulnerable parts (getting my teeth cleaned, doing chiropractic
work). I am maintaining the residence of my spirit, this body, like I
will be living in it for a long, long time.
Meanwhile, I have decided to undergo (notice we never say "over-go") oral
chemotherapy to hopefully knock the cancer back some while we wait for the
magic "GVAX" vaccine door to pop open and admit me.
Please email us, and know that if our
updates are irregular, we're busy fighting for my life.
Love to you,
Thank you to all of you who sent messages of support and wisdom about my
brother Roger's brain hemorrhage, as well as Mary's latest CT scan
news. Rog stabilized, had a successful surgery to repair an aneurysm
(though what caused the original bleed remains a mystery), and is back
home in amazingly good shape for what he's been through.
Thank you also to the rockin' amazon housecleaners and menehunes who
descended on our house while Mary and I took a much-needed weekend away in
Monterey, and who transformed our place into a welcoming, clean home
touched by loving hands, while still managing to preserve our very homey
clutter of art and photos and books and stuffed animals and altar-y things
around the house.
A little added detail on the vaccine trial that Mary spoke of. There
are research sites in 5 cities throughout the country—Spokane,
Dallas, Tyler TX, Baltimore at Johns Hopkins, and Albany. As more batches
of the (scarce) GVAX vaccine become available, patients will be called
from the waiting lists (which range from 4 - 20 people at the
sites) to assess their condition and eligibility for a slot at that time.
You can read more about GVAX and the trial on the web.
It's described there as "fully enrolled" because more vaccine will not
become available until the next month or so, potentially creating one or a
few additional slots at each research site involved in the trial.
Hoo boy. It's been a roller coaster ride this week. Mary and I geared up
the support and research networks again, and the information and
supportive messages have been rolling in every day. Thank you so
much to all who have been reaching back to us, and also to those of
you who've been putting out the word to others.
We're following up on a couple of immunotherapy (cancer vaccine) trials
that may help Mary; redoubling her nutritional and other complementary
medicine supports; getting lots of TLC and wise care from her amazing
acupuncturist and our precious couples counselor; and lining up an
appointment with an M.D. who's been referred to us as an excellent
mega-researcher for cancer patients in Mary's situation.
But then, just as Mary and I were sort of spiritually getting up and
dusting off our knees and seeing our way forward, we heard late Sunday
night that my one and only younger brother Roger had suffered a cerebral
hemorrhage of unknown cause, and was in intensive care in Redwood City.
Rog has pulled through the first crisis, is now speaking and coherent and
receiving good care, but it has left the whole family—who,
thankfully, all live within driving distance and have rallied
around—coping well but awfully shellshocked. OK, left me awfully
shellshocked: just what in the world is happening here???!
Mary, in the midst of her own crisis, has turned around and been a huge
and loving and practical support for me all this week. I am grateful
beyond words for this, and it reminds me in fact of how we've managed to
make it through the past year so intact, in the ways that matter most:
neither one of us is A Rock. We're small when we need to be, and strong
when we need to be, and sometimes this changes a lot even within one
(hard) day. This seems to be true of our most supportive and durable
More from us later ...
I am looking forward to going into work tomorrow at the OCC and seeing
and sharing contact and comfort with my co-workers, letting them know
I'm going to be out on Catastrophic Illness Leave again, and providing my
leadership plans to key staff and the Police Commission's officers.
I will be spending the next month strengthening my body and spirit,
resting, preparing as much as a person can for what I hope will be
successful further treatments, including possibly immunotherapy (vaccine
therapy) starting if and when I am admitted to the trial, which may begin
in 1-2 months.
It is extremely hard to be confronted with so many unknowns, so much that
is way, way beyond my control. My faith in the essential goodness that is
always present in some form—real, potential,
me deeply. Along with plenty of fear and distress, I am hope-full.
Thanks, Maureen, for this and all these entries. Love to everyone
CAT SCAN RESULTS . . .
I'm sorry and sad to have to convey: the cancer spread to my liver,
according to today's just-received CT scan report. This is really hard
news for Maureen and myself. It's also surprising to us, just because
I've been and am right now feeling strong and healthy.
If you're reading this and feeling bad, just know: so are we,
dammit! But, also, we really take strength and hope—yes,
hope!—knowing you're out there sharing our crappy crappy news.
One confession of ego: In the shadow of the awful 1-year anniversary of
attacks on the people and life of this land, I wanted to be able to post
great good news about my health. O well. I am here, so's Maureen, and
we are o.k. for today.
So: send us a message or
a card. Don't let this scare you away (unless it must). We need and look
forward to your words greetings wishes concerns now more than even before.
And, please remember: today we are here, and well, petting our
dogs hugging kissing laughing and crying.
P.S. We took the dogs, a $5 bag of jellybeans, homemade signs ("Peace",
"Invading Iraq is not the answer") and drove to a peace rally in Marin
yesterday; passed out jellybeans and encouragement to the human chain for
peace; and finished the day at Muir Beach romping and in Mill Valley
reading and chomping.
Poster ©2001 Steven Lyons
No question, this summer has been a precious gift.
Just about a year ago now, when the dire words "pancreatic cancer"
crashed in on our lives, who would've thought Mary would be so well, so
strong and—except for a huge need for sleep, a normal result of
months of chemotherapy—so herself as she is now? Wow!!
Mary's back at work full-time at the OCC, and I'm wrapping up a
satisfying tech project in support of international women's rights and
health for the Ford Foundation. We've taken daily joy in our dogs, gotten
angry and activated by the news again, and have more to give the people
close to us because life sure goes on: this summer two of our friends had
their loved ones suddenly thrown into a fight for their lives (our hugs
reach out to you Gaylene, and to you Nancy).
And despite a routine that's blessedly normal, I can't say we haven't
been scared. Each new CT scan—the next one is scheduled for
tomorrow, September 4—brings it all back, from the night Mary's
fasting and taking the dyes to when she's lying on the table (joking with
the techs of course) to when we're sitting in those little doctor's exam
room chairs several days later, our stomachs dropping, waiting for the
July's CT results showed a couple of small liver anomalies, two tiny
spots on a finer-than-usual scan, and Mary's blood tumor marker number was
a wonderfully low 12. Of course we fervently hope that the results of
tomorrow's tests will be the same or better...and that there are no new
We'll post the results when we get them, September 9, and meanwhile please
keep Mary and me in your thoughts and prayers and beams and hearts.
Mary and friend Rhonda, May 2002
The past two months have been very full. In May Mary celebrated the
end of her treatment (and her excellent
test results) with a trip to Hawaii, where we explored the Big
Island with Mary's sister, visited an old friend near Hilo
and replenished our spirits (and our sleep) on our beloved
May 25th was Mary's 54th birthday and it was exhilarating to
celebrate that milestone among good friends,
including several who travelled from the East Coast to be with
us. Wendy Williams, you just knocked our socks off when you
rang our doorbell, I still don't know how you managed to keep
that a surprise!
Then, on May 28, Mary started back to work full-time as Director
of the OCC, and has
going strong ever since. She's walking
regularly, sleeping a lot when she can, and faithfully keeping
up herbs and
acupuncture. It's been a busy time but normal busy,
which is a huge relief for both of us.
Last week Mary had her first CT scan since the end of her
treatments in April, and we are waiting to
get the results today. Even though she feels in excellent
health, waiting like this just brings back the whole
ordeal ... so a special thanks to all the folks who celebrated
Gay Pride with us this weekend: you
kept up our spirits and made us feel very much alive!
From Mary, later the same day...
The CT scan news is essentially perfect—no sign of any
metastasis or new tumor. There
is a tiny (really tiny) anomaly on the liver, but the oncologist
strongly emphasized that it's very
likely nothing menacing. All prayers and positive thoughts are
welcome to include a mention that
the little "micro-dot" be innocent and meaningless.
The blood marker test (CA 19-9) remains at a wonderful low 12,
well below the worry-line of 37 or above.
Translation of all this: the test results match my feeling that
I am doing just great. The outsides and
insides of me are harmonizing well! Love to everyone who's
checked in here lately, and we will be
putting up some Hawaii photos soon.
Happy International Workers' Day!
This month Mary celebrates her birthday (on May 25) and on May
28 returns to work at the OCC.
Though her body is protesting "What have you been
doing to me?!!", Mary is recovering some of her justly
Her doctor has scheduled her for a follow-up CT scan in June, and
she is continuing her treatments with acupuncture and herbs.
We're taking a break for now, and will have more updates in
three weeks, including recent photos and patches we just made
for an Art for (Cancer) Recovery quilt at UCSF.
CAT SCAN RESULTS . . .
From Maureen ...
Yesterday Mary went in for her first full CT scan since
January and the results are wonderful!!!!
"There is no evidence of new tumors or metastatic disease."
This is exhilarating news, coming at the end of many months
of chemotherapy, radiation, Chinese medicine and the support
of many allies in healing against this deadly form of cancer.
It feels so good to share this good news ... and even better to
live it! ¡Viva!
A milestone. The finish line. Did we really get here????
Today Mary goes in to UCSF for her last chemotherapy infusion,
her last official step in the clinical trial regimen that began
last October. She is exhausted but happy, and in amazingly good
physical and emotional condition for what she's been through.
Here is a quick update on how things have been going:
- The March 20 event at Boalt (and the Berkeley dinner after)
in Mary's honor just filled up our hearts! Mary was flying so
high afterwards that we couldn't just drive home across the
bridge but had to find a Berkely cafe (espresso for me, steamed
soy for Mary) and keep talking about it, the latest we've stayed
up at night (for something fun) in recent memory! We'll be
posting more about the event, including putting up photos and
transcripts of some of the tributes.
- At the end of March, the UCSF staff treating Mary again ran
the blood-marker test called CA19-9,
which helps measure the progress of pancreatic cancer treatment
(it's similar to, though less accurate than, the PSA marker for
prostate cancer or CA-125 for ovarian cancer). A good CA19-9
result is under 37; Mary's was twelve (12).
- Today Mary gets her last chemo infusion and spends the next
week or two recuperating from it. The clinical trial she's
enrolled in officially ends April 15, at the end of her last
3-on, 1-off chemotherapy cycle.
- Next week, on April 15, they do a final CT scan to see how
Mary responded to the full course of treatment. We get the
results on April 17.
So light your candles, send up your prayers, keep us in your
hearts, and thank you for your ongoing support!
UNIVERSITY OF CALIFORNIA BERKELEY
EVENT WITH MARY
At UC Berkeley, the Boalt Women's Association, Boalt
Women's Law Journal, LGBT Caucus, Berkeley Law Foundation,
Coalition for Diversity, and the Center for Social Justice,
together with Boalt Dean Eleanor Swift and Dean Vicki Ortiz, are
co-sponsoring a reception to honor Mary and her work.
Date: Wednesday, March 20th (the first day of spring!)
Time: 3:30 pm
Place: Boalt Hall, University of California,
This event is catered and open to the public.
We welcome you to come!
The flyer says: "Mary co-founded Equal Rights Advocates,
sexual orientation law
classes at Stanford and Michigan, argued before the Supreme
Court on behalf of gay rights and gender equality, challenged
the representation of minorities and women in the SF Fire
Department, and more."
Today is exactly six months after Maureen and I were told I had
pancreatic cancer, and approximately six months from being told
that I would die within 6 months (99% chance) and that surgery,
chemotherapy and radiation therapy were not going to be
I feel glad and thankful to be alive today, and I feel more. I
feel grateful for all the forces, starting and ending with my
Higher Power, that have brought me to here and now.
I feel angry and disappointed that my medical care started with
someone issuing a sort of "death sentence", especially because I
have come to realize how tragically common such "medical hexing"
is, and how many people less blessed and less fortunate than
myself are seriously harmed by such practices.
I feel hopeful, enthusiastic about finishing chemo in several
weeks, exhausted, still working to stay open to the
as-yet-undiscovered significances and opportunities of this
experience—even as I am tired of it, even as I do not
there is necessarily any "point" to the whole experience. That
is, I am both respectful of the meanings and insights that
cancer has brought, and I am respectful of the wasteful,
burdensome and (my inner teen insists) really suck-y nature of
this illness, treatment, etc.
This gratitude list could go on and on, and in my heart it
does. What I ask for, for this day, is to have the strength to
believe in the good prognosis, to keep hope and convey hope, to
live through whatever life presents, and to go on beyond
fear. I am blessed. Thank you, everyone!
The past few weeks have been something of a slog through
chemotherapy, with the "finish line" still feeling pretty far
away. Mary's had some dose reductions (still within the clinical
trial guidelines), and "Procrit" shots (a red-blood-cell booster
that's popular with cancer patients and athletes who plan to
cheat in the Olympics) to bolster her physically. She'll be
posting here later this week.
On a happier note, the University of California Berkeley's law
school, Boalt Hall, is hosting a reception later in March to
honor Mary's civil rights work, particularly over her long career
as a lawyer and a teacher. The event is open to the public, so
I'll be posting more details on this later.
So, yo, I'm back in the groove (and, sometimes, the rut) of
weekly chemotherapy, as of Monday 1/28. All the common
metaphors seem pretty appropriate: roller-coaster, riding the
waves, "a mixed bag". Essentially, for those wondering, chemo
affects every person differently, but also tends to affect most
people negatively. I am among most people, having fever,
headache, rashes, nausea (which is thankfully pretty well under
control by medication) and exhaustion at least 48-72 hours out
of each "chemo-on" week.
"Chemo, scream-o, all a big bad dream-o" properly conveys my
frame of mind about it.
However, I have this in context: I am just a few days past a
great CT scan result—no new cancer showing—and the
blood tests are good, too. Also, my chemo symptoms are much
milder that those experienced by some other brave souls having
to do this. So, even as I must complain as a sign of sentient
life, I'm doing WELL.