start at the present and work backwards.
We've just settled on a treatment plan after weeks of agony as we read
technical documents and tried to become proficient enough to understand
them and, better, to be able to read between the lines.
Over time it sunk in that although the hospital was recommending/pushing
chemo experimental protocols and radiation, the medical records don't
show much result for either in the case of a glioblastoma -- the most
aggressive of brain tumors. In fact, all the prognoses were very dire.
We began to look into alternative treatments. It was difficult untangling
the charlatans from the dedicated and the hopeful treatments from the
At length we were put in touch with a doctor in Nashville, Tennessee
(a lifelong Episcopalian as it turns out). He recommended two things:
taking Thalidomide (the drug responsible for so many birth defects because
it blocked the development of new blood vessels; good in the case of
tumors) and ultrapharesis. The latter is a treatment that he developed
which, with a dialysis-like machine, screens certain proteins from your
blood which he believes tumors use to cloak themselves, hiding from
your immune system. Without them, the disguise goes down and the immune
system can go to work -- this involves the tumor growing hot and inflamed,
dying and liquefying. He's in phase III clinical trials with this for
some kinds of cancer and just starting a phase I trial with glioblastomas.
We've signed on. I started Thalidomide two weeks ago and start ultrapharesis
on December 1.
Since Advent is our family's favorite season, I dread being away for
three weeks in December, but on the chance that it will work, I'll go.
(Friends and family are taking stints so I won't be alone. I'm kind
of hoping I might feel well enough to rent a blonde wig and go to an
open mike night near the Grand Ol' Opry.)
So that's where I am. (We're also eating semi-macrobiotic and I'm taking
nutritional supplements to build the immune system.)
During the time we took to think, we began to get pressure from the
hospital and from friends who felt we were taking too much time when
this kind of tumor can double in size in 10 days! Five weeks out of
surgery I asked for an MRI and was told it was unnecessary. Finally
I got one anyway and had to wait two weeks to have it read by a doctor
in Canada (long story). We've just heard that the tumor did not grow
during that five weeks! This widely respected Canadian, Greg Cairncross,
also holds out some hope that the pathologists who declared it a glioblastoma
may have been wrong -- possibly it's a slightly lesser grade cancer.
He'll let us know in a month after they have done genetic testing on
the tumor slices.
You can tell we've been all over the map from despair to hope. We're
learning a lot. We are so grateful to friends and to others we've never
met who have sent encouragement. We're grateful to those who remember
the kids in prayer and in correspondence. On the surface the kids seem
to be doing quite well, but this just means their terror is buried.
Lydia, 12, said recently, "I just don't believe you are dying.
Everyone's always crying, but I don't believe it." She pretty much
said she'd revise her viewpoint if it became clear she needed to later
-- this seemed sane to me. Lucy has started writing short stories about
a family with two children in which the mother has died, but she pins
me in huge hugs and declares her love in clear hope that she can hold
me here. Nowhere I'd rather be.
So here's the history:
At the start of Labor Day weekend, I was finishing up the October issue.
I had already heard from Julie who said, "What about shortening
this article, moving this one, identifying your article as an editorial
and cutting a page out of it....?" I agreed with all her suggestions
which was extremely fortunate because a few hours later I would be having
seizures on my bathroom floor and waiting 20 hours to be rescued by
a wonderful friend who helped me get dressed and to the hospital ER.
(Julie took over the completion of the issue with Marianne's help and
did a terrific job.) During the hours I was alone I figured I was having
a stroke and wondered whether delaying getting to the hospital was a
bad idea, but I didn't have the decision-making ability to call anyone,
not even Bill who was with the Kellermanns for Labor Day (I was supposed
to be going on a retreat that weekend, so no one in my family had any
reason to suspect I was lying on the bathroom floor). It makes me feel
stupid to think that I didn't call for help, particularly since my eventual
rescue came when a friend called in and I heard her voice on our answering
machine. I answered. But our doctor says I couldn't have done otherwise.
At ER they did a CT scan and told me they'd found a mass and would need
to find out if it was a malignancy. Then they put me through every kind
of scan they could think of to see if I was riddled with cancer. The
rest of my body was clear. The MRIs showed a sizeable tumor in the front
right side of my brain, an area surgeons would call "quiet."
My vital signs quickly returned to normal. I was stabilized with Dylantin
(for seizures) and Decadron (to prevent swelling) and sent home after
we asked for time to choose our own surgeon.
At this point Bill and I started a long process of learning about brain
tumors -- worse than cramming for exams because my life hung in the
balance. We cried a lot. We prayed. We consulted the Internet. We read
the materials that friends sent our way. We called doctors and made
appointments. Finally we settled on a surgeon at Henry Ford Hospital.
At the last minute we learned that the surgeon would be this man's partner,
but we liked him very much so that was okay with us.
At the hospital and at home, we listened almost constantly to sacred
chant. It seemed to go deep and beyond our fears and concerns. I kept
thinking, "the monks hold the center." With surgery slated
for October 1, I was admitted on September 30th and put through another
MRI and an angiogram (one of those tests for which you have to sign
that you know that you could have a stroke or die). As it turned out,
I was allergic to the radioactive iodine and got a killer migraine and
eventually threw up during an additional MRI.
The surgery was early the next morning. Bill stayed with me until I
got wheeled into the operating room. Next thing I knew, I was terribly
thirsty and lying on a mobile bed in a recovery room that was as crowded
as many ERs. I wanted water and they said no. I wanted Bill and they
said no. At length, I got ice chips and the surgeon brought Bill in
(over my nurse's protests).
Forty-eight hours later, I checked out of the hospital! I had expected
to want to stay, but was startled to find that they would it feel it
necessary to check my vital signs and prick my fingers for glucose testing
all night long. I kept asking, "Isn't sleep part of healing?"
When it dawned on me that no would wake me up at home, I was excited
to get out and willing to trust that we would figure out how to take
care of me. (My mom came up to help for three weeks!)
There's more to say about the things we're thinking/learning about prayer
but that can wait for another posting. Thanks for checking in.