The quick version: a scan in late July found a tumor just over 1 cm in my liver.
After four rounds of chemo, the tumor appears unchanged, but there aren’t any
more of them and it hasn’t grown. So the plan is to zap it with radiation,
probably starting in about three weeks. The radiologist seems very optimistic
about good results. The full details are actually kind of
interesting...
Pancreatic cancer is a pernicious, persistent, systemic
disease. It is hard to find, it spreads rapidly, and it almost always comes
back. Therefore, the most efficient treatment is chemotherapy, a systematic
approach. That is why I just did 4 more rounds, and have done 20 rounds overall.
I am fortunate that chemotherapy has worked well for me and my body can tolerate it. However
it makes me miserable; profoundly fatigued, depressed, nauseated, and depressed,
did I mention depressed?
However, occasionally the tumors are isolated
and there is no evidence of spread. In this case my tumor is isolated, somewhat
easily accessible, and most importantly, far from any other major organs. So, I
am a candidate for SBRT radiation, which is a very high dose radiation protocol,
given over five consecutive days. It is pretty common for attacking colorectal cancer, but not often used for pancreatic since the latter is usually widespread. I have already done SBRT, in December 2015
after chemo and prior to the major surgery on the two tumors I had then. My surgeon then felt that it was an important factor in his ability to clear those two tumors
from difficult positions.
For SBRT radiation, I try to lie perfectly
still for 30 second intervals over about a 45 minute period while I get zapped.
I had virtually no side effects the last time around. So I’m really pleased that
we can do this approach instead of more chemo.
The most unpleasant part is just getting to Johns Hopkins five days in a row, not to mention the scans and evaluations before and after. If any of you local folk would like to
volunteer to take me for one of the trips, we would be very
appreciative!
It may not seem this way but I am in fact a very lucky man.
I do have to remind myself of this frequently. And I am lucky to have lots of you
as my friends!
😘
Rick
Trail Notes
Friday, October 4, 2019
Friday, December 14, 2018
Chemotherapy
So here I go, the
day has come, I’m about to submit to voluntary poisoning. I
can feel my skin prickle and my stomach clench as I enter the building, a plain
four-story brick box that belies its status as where lives are saved or lost. On
the elevator to the top floor I visualize the chemo drugs coursing through my
veins in oily black, intermingling with my blood and spreading liquid dread to
all my extremities, until my limbs darken and die. Once again I ponder the
absurdity of deliberately ingesting toxic cocktails; knowing they will hit me
hard, but not yet understanding what it will feel like or just how hammered I
will be; and yet again considering that I have chosen this of my own free will.
It’s hard to accept that I’m here to make myself feel dreadful – but there is grim
resolve that I’m about to stop being a docile victim and start fighting back.
Now I’m shaking visibly
as I walk into the treatment room, with Allison by my side; I can smell my own
clammy funk despite the air-conditioned chill that has the nurses all draped in
sweaters and lab coats. Scanning the room I see five or six pods of patients receiving transfusions.
Each pod has four recliners, with IV stands and monitors clustered around them.
Each IV has a pump to deliver the flow from a bag of liquid; most of the
recliner stations have several bags hanging on the stands. The recliners are each
a featureless industrial gray, and all of them have an adjacent gray chair for
a family member or friend. At the end of each pod is a nurse’s station with a
desk, a computer, and assorted medical hardware, scissors, clamps, clipboards
and such. Several of the stations have flowers, pictures or drawings, or mugs
with clever phrases, to add a personal touch to the grayness. It all smacks of
functional efficiency, like an assembly line to service malfunctioning humans,
all queued up for repair.
All of the servicing
stations are occupied. The patients are old; at least to me, though they are more
likely about my age, though not the age I see myself. Most are fully reclined,
supine; many with their eyes closed, but more just staring vacantly into space.
There are TV’s mounted high on the wall in each pod, tuned to Home and Garden or The Food Network or CNN,
but no one seems to be watching. Closed captions scroll across the screens; the
one to my left is a cooking show, and I see “sterling in the blended batter” roll
across under a mixing bowl and a wooden spoon. A few patients wear headphones
or ear buds, but most just seem to be staring upward as though counting the
dots in the ceiling tiles, and I have a brief memory of middle school. I notice
that are many Asians, and I have the fleeting thought that maybe God is
punishing them for their inscrutability: ‘you’ve got cancer: I’ll bet you’ll
show some emotion now!’ Others of the subjects - patients? sufferers? - are
engaged in muted conversations with their companions, not wanting to share
their indignities with their neighbors. One woman has a startlingly bright
headscarf, swirling with purples and magentas and pinks, but the brilliant
colors only heighten the contrast with her sallow complexion. And all of the
faces say fatigue; fatigue and sadness and resignation, as though their
vitality is draining away to make room for the venom dripping from the bags.
All of a sudden
there’s a persistent beeping sound. And then another from the other side of the
room. I see a nurse walk over and look at an IV pump, and begin to unhook the
empty bag, the beeping is the signal that an IV is finished and needs to be
changed. I will soon learn that with forty or more people under treatment the
beeping signals are going off every couple of minutes, and often there are
beeps going off simultaneously around the room. It’s random and unsettling, and
heightens the sense of tension that blankets the somber aura of the room. In my
mind I see a McDonalds, with troops of attendants in white coats scurrying
around to reset machines. For a second I even sense a whiff of French fries, a
thought so unsuitable that I laugh out loud.
This draws the
puzzled attention of the front desk administrator. She greets me cordially, and
we exchange small talk, but I’m on autopilot and none of it registers;
something about traffic and rain and construction. She directs me to an open
recliner, and I take my seat. Allison sits in the chair alongside.
As
I get situated I look around my little pod, maybe 15 feet by 15 feet with its
office-cubicle walls and its four stations for patients. To my left is the
woman with the headscarf; she looks to be about seventy, but she could just as
easily be fifty or ninety. She is lying with her eyes closed, her face pasty
white and slack, her chest rising and falling almost imperceptibly. But she
doesn’t look peaceful, just vacant. To my right is a younger woman, maybe forty,
sitting up and looking alert and unfazed, a magazine in her lap. Her companion
is another woman, her sister or friend or lover, typing away on a laptop. They
could be in any waiting room anywhere, as though waiting for a routine
check-up. Diagonally across is a man, and I notice with a start that his
blanket covers only one leg, the other side flat and empty where I want to see
the second one. I look up to his face, and it is covered with splotchy
blisters; there is a particularly large and angry red one above his left eye.
His hair is ragged and thin, drifting downward in long unruly wisps, saying
that he no longer cares to pay it mind. His arms too are riddled with sores,
and there are tracks of black and blue along his forearms. Next to his recliner
is a wheelchair, an exclamation point to his story.
The woman on my
right looks over and gives me a half smile, and then returns to her magazine.
Though we are all only a few feet apart, it is clear that this is a place of
guarded privacy and equally guarded emotions. We are there together, but we are
also there alone, and we all feel this. I settle into my recliner and take out
my own Ipad and headphones, and Allison takes out her laptop.
My nurse comes
over. She's a short. thirty-ish African-American woman with her hair in neat cornrows.
“Hi,
Mr. Abraham, I’m Frances. I’ll be your nurse today.”
“Hi Frances. I’ll
be your victim.” She forces a smile, I guess she’s heard it all before.
“I understand that
this is your first treatment. I will explain it to you…”
She
starts to walk me through what is going to happen. She has just the right
demeanor; she is direct, but warm; matter-of-fact, but not short; professional,
but compassionate. I like her instantly; she’s reassuring, but I’m literally
shaking. Go ahead, I think, poison me, give me all you got – I’m ready.
“We’ll
start you with Ativan, which is a sedative, and then a steroid. They should
help you a calm down a little, and give your immune system a bit of a boost.
You should start to feel a little better. Please tell me your full name and
birth date; we will do this every time we give you a new drug. Make sure this
label on the bag is correct.”
And
so I do, and it is. (And so they do check the name and birth date every time,
later that day, and the next time, and again and again over the weeks and
months ahead until I consider just having it tattooed on the ample space on my
bald forehead.) And then she plugs the IV into the stent that goes to the brand
new chemo port high on my chest, and we are underway. But not before I get a
waft of the alcohol prep that precedes each IV, the smell that will become the
trigger for each clench of my gut with each new chemo bag in the weeks and
months to come.
A few minutes into
the steroid and sedative and I’m feeling better. There’s pleasant warmth
flowing through me, I’m feeling a nice gentle buzz, and I decide the mood calls
for some new age music. I push my recliner back to full tilt – hmmm, this isn’t
so bad, I’m starting to calm down a little bit, the sedative is working. I plug
in the headphones and Liquid Mind is pulsing through my brain, and soon I’m in
a much better place, suspended between wakefulness and sleep. This is the first
hour of chemotherapy; wow, this isn’t so bad, it’s not what I had expected…
“Ok, Mr. Abraham,
it’s time for the first drugs. This one is called Oxaliplatin. I’m also going
to give you Emend; it’s an anti-emetic, which will help keep you from becoming
nauseated. You probably know that nausea has always been a big problem with
chemotherapy, but these new drugs have really helped. It may make you feel
pretty dried out, so try to drink some more water. What is your full name and
birth date?”
“OK”, and I repeat
my stats, murmuring through the gentle haze. “Do it to me one more time”, I
either think or mumble, and I for a second I picture The Captain and Tenille in
their sailor suits, crooning away.
She hooks up the
new drugs. (Ugh, there’s that alcohol smell again.) I slip back into my drowsy
reverie, the sounds of Yiruma accompanying me this time from my IPad.
I
don’t know how long it’s been, but suddenly my throat has become dry. Very,
very dry. Not dry like I want a sip of water, but dry like lost-in-Death
Valley-in-a-dust-storm dry. Like it’s not just my throat and my mouth dry, but
it’s dry all the way to my fingertips dry. It’s like a Death Eater has come and
locked lips with me and sucked every ounce of moisture out of my body dry. I’m
finding it hard to breath, and swallowing is no kind of possibility.
“Water”,
I croak, and swing my chair up to a higher position and start to sit up. And
that’s when the first wave connects connects, and I feel a tidal rush of druggedness
as the effects of the Oxaliplatin kick in. I slump back to the chair like I’ve
been hit by a two-by-four.
“Unhh… Umgh… Ogmph”, articulation fails
me and my head connects drops back onto the recliner. I look over at Allison
and her eyes big and white as ping-pong balls, and she scrambles to get me the
bottle of water. Greedily I suck it down as it dribbles from both sides of my
mouth, down my neck, soaking my shirt collar, and I find that drinking on my
back is like drowning, and now I’m dry and inundated at the same time.
Coughing, sputtering, gasping, I sit up again. Again I’m hit with a wave of
weakness, though this time with Allison’s help I’m able to stay upright, and I
spit out the water I’ve aspirated with a violent cough.
In the background I can see all the eyes in the clinic looking upon me in
surprise. But I’m not really concerned about the reactions; sitting up, I chug
what’s left in the bottle, paying no heed to the water that leaks down the
front of my shirt and soaks the front side this time. But I am beginning to
breathe again.
“Are you OK?!”
Allison looks like she’s seen a ghost.
“Yeah”,
I say.
“More water. And I don’t feel so good…”
The
drained feeling is like nothing I’ve ever experienced, a little like the torpor
of a high fever but accompanied by an other-worldly drugged sensation, like
I’ve become unmoored from the floor and am floating up into the haze. Allison
hands me a refilled bottle and I manage to drink it haltingly, and then I tilt
the recliner again and drift back into semi-consciousness. But when I lie back this
time instead of the vacant, sleeplike state I had experienced before, my mind
has become active. Instead of blankness I am beginning to have visions.
I’m in a wagon,
drawn by a horse, with a driver. Look its Allison driving. I’m lying in the
back, it’s a small cart and I am covered with a blanket, except my head and
feet stick out at either end.
I’m asleep, or dead, or something between, I can’t tell. And I have no idea
where we are going, but I’m helpless to move or ask. And then without any
transition it’s suddenly over, and I’m in a big field, standing. All around me
are colorful flowers… no, wait, they are not flowers, they are children… but
they are tiny, very tiny, the size of robins or blue jays. And they are all
singing. It’s the song from The Grinch, “Hurry Christmas…” And then, just as
suddenly, that vision is over, and there’s new one…
And so it goes.
Vision after vision, no clear link between them, no apparent reason or
interpretation. Now I’m an eagle flying overhead, watching a soccer game and my
daughter dribbling down the field, swerving back and forth between defenders like
a droplet down a windshield. And then I’m in a car, driving across a massive
suspension bridge, eight, ten, twelve, twenty lanes wide, and the road gets
steeper and steeper and steeper, until I’m almost driving straight up, and then
I’m off the end of the bridge into the air! That one was scary, but wait, here
comes the next one… I’m aware they are
happening, and I know they are not real, and I know I’m lying in a chair in a
clinic, but they just keep coming like images in a movie trailer, a surreal one
with no plot or theme. They are not unpleasant or unnerving; they just are
there; I’m just a helpless observer, so drained that I van only watch as the
film rolls by. I know time passes, but it could be a minute or an hour or a
day. The little vignettes are punctuated by beeps, one far away over there,
then one nearby on my left, then a couple at the same time, here and there, but
they don’t have a role in the stories. And then there’s one right next to me,
and my Oxaliplatin ride is over.
“How are you
doing?” Frances says, as she comes over to swap out it out and start the next
IV. I look over at Allison; I see in her eyes that I look like an alien being.
“I’m OK,” I say.
“I’m so weak. I can barely talk. And I’m having crazy visions.”
“That’s
not uncommon. Are they upsetting you?”
“No, not really.
They’re just really weird. Like little pieces of weird dreams all spliced
together.”
“Yeah,
I’ve heard that from other patients. And you are on some really powerful drugs.
Well, we are ready for the next one. This one is Irinotecan, it’s very strong,
too. It may make you need to use the bathroom frequently; some patients call it
‘I-run-to-the-can’. Here’s the label, what’s your full name and birth date…”
I’m glad when she
walks away, talking has become such an effort. I lie back down to hear the next
swell of lutes and wind chimes from my earbuds, this time it’s Enya, and I wait
for a new round of visions, oh yeah, here it comes. Now I’m surrounded by owls,
all the same size and color, brown and white spotted bellies and eerie white
owl faces, turning their heads in unison and watching me as like I’m conducting
an owl symphony. Hundreds of them in neat little rows like tuxedoed patrons in
an opera hall. And then, abruptly, I’m flying off in a hot air balloon, and I
look around me and there are thousands of identical balloons, all in the beach
ball red-yellow-white-blue pattern. They fill the air with color, against a
brilliant blue sky like the desert on a crisp winter day. It’s a glorious
vista, and my heart swells and tears come to my eyes.
Suddenly my
stomach starts cramping and I know immediately that lying there dreaming is suddenly
not an option. It’s time to find a bathroom, in fact it’s already past time,
and the consequences are going to be pretty dire. I quickly raise the recliner
and swing my feet to over to the floor – and I’m greeted by a flood of
blackness and loss of amy muscle control and coordination, and I promptly fall
right off the other side of the chair – right into Allison’s arms as she moves
up to catch me.
“Whoa!”
she says. “What are you doing?!”
“Bathroom!” I say.
“Quickly!”
She
helps me rise to a wobbly crouch, and I start shuffling down the hall. But
before I get two steps, I feel a pull in my chest, and the IV stand begins to
topple. Frances is there in a flash, grabbing it in one hand and my arm in the
other.
“Not
so fast! You’ve got to take the IV with you. You have to unplug the pumps,
here, and the stand is on wheels, and the pumps keep running on the battery. So
you can take it down the hall with you. Here, I’ve got it; now come on, I’ll
help you.”
And
so I stagger down the hall, half my weight on Frances and the other half using
the IV stand as a walker. It’s about 20 feet to the lavatory, but it feels a
lot longer as the floor undulates and the walls pulse in-and-out with the
blurring of my vision, and me trying to keep my sphincter tight to avoid an
accident. Finally I make it to the toilet, and Frances helps me get the IV
stand set before she makes a timely exit and I’m able to lower my sweatpants
and almost get down to the seat before the rush starts. It’s gross and
revolting as diarrhea always is, but what’s different is the smell; it’s not
just the smell of excrement, but also a gagging metallic
odor that is like nothing human. It reminds me of a very worst morning
hangover, from a night way too much of something appalling like tequila. And so
I sit on the toilet, too drained to get up, emptying my bowels with watery
surges, and gagging from noxious gases that I can’t imagine could come from any
living body. It’s a humbling experience; whatever else cancer will do to me, I
think, first it will rob me of my dignity.
Eventually the
episode is over, and I wobble back to my chair with the help of my wheeled
tripod companion. I’m able to connect the cords and wires and plugs, and a few
minutes later I’m lying down again, and back in the land of soft guitars and
harps and visions. It’s a relief… but a short-lived one. Because before I know
it, is it ten minutes later or twenty or thirty, I’m not sure, but here come
the cramps again. I better get my ass back to the bathroom – now! And so I
repeat the whole process; I stand a little slower and more carefully this time,
and manage the IV stand and the plugs by myself, and stagger down the hallway
with my stand to keep me upright, and I make it to the bathroom on my own. And
I feel a weird sense of pride and accomplishment; I may be a basket case, but I
can go to the bathroom by myself.
Again I manage to
get back to my recliner on my own. “I remember Irinotecan”. I look up. It’s the
woman on my right speaking. “I couldn’t even get out of the bathroom. I was in
there for about an hour, and I was throwing up too. And when I wasn’t doing one
or the other I was lying on the floor. You’re doing really well.”
I
look at her again, and try to comprehend the idea of ‘doing really well’ in the
context of the churning in my gut. She looks totally normal. “Thank you,” I
manage to say[ASK11] .
“Do you have cancer?”
“I
did. Pancreatic, just like you. I did Folfirinox, and then I had surgery back
in February. I’m cancer free now.”
I’m
stunned] ,
and instantly tears well in my eyes as though I’d been stung. “Wow. You look
great! Who is your doctor?”
“My
surgeon is at Hopkins, Dr. Polchuck. He’s amazing. He saved my life. I’m
Barbara, by the way.”
“I’m
Rick. Sick Rick, right now. Nice to meet you. Why are you here now?”
“My
doctor wants me to do chemo for awhile as follow up, in case there’s any
remaining cancer. But this is a piece of cake compared to what you are doing. I
know, I was only able to do seven rounds of it.”
I
try to take this all in. She’s cancer free! But only able to do seven rounds of
Folfirinox. And
her doctor is at Hopkins, too. Holy shit!
We
talk for a while. She had a large tumor on the head of her pancreas, with
traces of cancer on her liver and in the lymph nodes. First diagnosed almost a
year ago. But the chemo and surgery got it all, she’s cancer-free now. She’s an
emergency room nurse, and she’s gone back to work, but only part-time. It’s
incredibly uplifting for me, and stunning; it’s the first news I’ve gotten
since I was diagnosed that isn’t totally fucking hopeless. I feel like crying.
Oh wait, that’s
not emotion, that’s Irinotecan striking again. Oh God, I have to get to the
bathroom… This time it’s a little easier, and a little harder; I know the drill,
but I’m even weaker than the last time. Every
time it’s a little easier and a little harder. But I’m thinking about Barbara,
Badass Barbara who Beat Pancreatic Cancer, while I sit on the toilet, which turns
out to be a long time this time.
When I come back
Barbara is gone. “She gave me her name and number,” says Allison. “She said you
should call her if you need to talk to somebody, and I think she meant it. She
even gave me a hug. I like her.”
I
do too. In fact I like her a lot. I settle back down onto my recliner and my
treatment.
So
this is Irinotecan. I don’t know how long it takes, or how many trips to the
bathroom, but in the end I’m even more drained and weak and grateful for my
gray recliner, which I have come to see as a very underrated thing. The visions
have mostly stopped, and now I’m in a state of semi-consciousness between awake
and asleep. More lutes and guitars and harps play on in my head, and I’m just
so, so out of it. Until the beep sounds again next to me, and I look up to see
Frances.
“OK,
Leucovorin is next. It is reduced folic acid, not a chemotherapy drug itself,
but it helps enhance the effects of the other drugs. I don’t know if you’ll
experience any side effects from this, I haven’t had any patients mention
anything from it. Here’s the label, your full name and date of birth…”
I nod, which is
about all I can muster. Soon there is another clear bag of liquid hanging over
my head, and I drift back into New Age land, this time to the sounds of
synthesizers.
A little later
there’s a hand on my arm.
“I think you
should eat.” Allison.
“Huh?”
“I think you
should eat. You know how important this is, we talked about it. It’s almost
2:00, you haven’t eaten since breakfast. You need to eat”.
My mind isn’t
working. But if it were, eating wouldn’t even be the last thing on it. My
stomach is still twisted and knotted, and the thought of chewing seems like an
impossibility. Just the idea of food sends me into spasms of revulsion.
“OK”,
I mutter. “I’m starving.”
Allison
gets out the container of chicken and rice she packed this morning. It’s the
good rotisserie chicken from Costco, with her jasmine rice and some broth so it
will be moist and tasty. The chicken is a staple at our house, it’s fresh and
tender and flavorful. Today it looks about as appetizing as coarse white sand.
She
heats it up for me in the microwave and returns to the recliner. I manage to
lever myself up to a sitting position, accompanied again by a shot of
lightheadedness, and get ready for lunch. She moves the tray over and puts down
the plate of food. I’m sure I look like a toddler surveying his first dish of
pureed brussels sprouts. Gamely I take a bite.
Sheet
rock, I think. This looks and tastes like a slab of sheet rock that has been
ground into little pieces, in a sauce made of plaster, powder, and drip water
from a demolition site. My stomach clenches, my throat tightens, and I begin to
sweat. Its flight or fight time, and I have to make a choice. I don’t have many
weapons against cancer, but eating is one of them. I clench my spoon with
determination.
Yep, the second
bite confirms it. Sheet rock. This is just how sheet rock would taste – dry,
crumbly, pasty, with big chunks of chalky grit. I start chewing, and the taste
buds send alarms: “Stop! Don’t do this! Stop!” But I soldier on, grimly,
determinedly, trying to ignore the signals of nausea. This is how I have to
battle, I have to maintain my weight and my strength, I have to take my
medicine. Never have I enjoyed eating less, and again it reminds me of being
four years old and having to choke down cold green vegetables with my nose
pinched shut, the price to be excused from the table. But I keep chewing.
Eventually somehow
the bowl is almost empty. I give myself permission to stop. “Take it away,
please’” I hear myself say, “And take it to the trash can. Not the one over
there, the one out in the hall.” Back down goes the recliner and me with it,
more drained than ever, but now with a churning and clenching gut and the taste
of plaster coating my tongue. Now I’m completely drained and nauseated. But I’m
able to drift off again into dazed slumber.
Before
long the piercing pulse of the IV beeper brings me back. “It’s time for the
last drug, Mr. Abraham”, says Frances. “This one is called Flourouracil. We
call it 5-FU for short, you can probably guess why.
I’m going to give you a push injection for about 20 minutes. When that is done
I will set up a little pump for you to take home, and it will keep giving you a
drip for about 40 hours. Your doctor explained that to you, right?”
I
nod, or at least I think I nod.
“You
might experience a chemical taste in your mouth, and you might feel more
drained or fatigued. Check the name and birth date on the label…”
Yep, it is still
me. More drained, I think? Any more drained and they will have to peel me off
the floor like wet rug. I notice I’ve drooled out the side of my mouth and I
don’t have the energy to even wipe it off. Maybe I send a telepathic message to
Frances, and she reaches over with a tissue and performs clean-up operations.
She seems to do this regularly, I note; it’s as though she takes on
extrasensory skills as I lose the ability to communicate. I feel so helplessly
grateful to her; her eyes tell me that she will be there with me.
The
5-FU push is a short twenty minutes, but I do seem to feel even more fatigued.
She comes and changes the IV connection over to the portable pump, which is
about the size of a shoe, which she puts inside a bag with a strap that I can
place over my shoulder. She points out that the pump has a window showing how
much has been dispensed, and about how many minutes are left until it’s done.
Every thirty seconds or so there is a whirring sound as the pump sends another
micro-dose through the line into my bloodstream. I feel another twinge of revulsion,
knowing that I will be continuing to poison myself for almost two more days.
I
look up at the clock, 3:45 pm, and I have finished my first six-hour
chemotherapy session. Now I have to get home. Frances grabs one arm and Allison
takes the other, and slowly we lift me upright and onto my feet. I’ve never
felt as lightheaded, and I can’t seem to remember how to walk; the two women
start to move, but my feet are velcroed to the floor. I reached down with my
hand and touch my thigh, which reminds me that I have feeling in my leg and
allows me to send a message to move it. And so I do, sliding my right foot
along the floor, then the left, so that I start to shuffle forward. I am just
so tired, this is so hard, please let me lie down again. I lift my head look
around, and it seems like everyone is staring at me, tilting their faces
forward, willing me to keep moving, taking steps. It helps, it gives me some
strength. I want to show them I can do it.
“Do
you want a wheelchair?” says Frances.
“No.
NO. I can do this.”
“I will go get the
car and pull it up front.” Allison.
“OK.”
Frances
stays with me, and we limp toward the elevator. It’s only about 30 feet, and
once I’m moving it seems easier to keep going than to stop. I look back into
the clinic at all the eyes on me, and it is a different place than the one I
had entered six hours before. No longer are these the group of pathetic souls
who I had seen when I came in; now they are fighters just like me and we are
together in this fight. I look into their faces and see that they are with me
and that we share something that others don’t understand, even our wives and
husbands and companions who are there with us, they try to but they don’t know
what it feels like. And I also see determination, grim resolve that was hidden
before, determination that they, that we, will do everything in our power to
live, to stay alive, to be there for our families. I’m so tired, and I can’t
envision how I can do this again, maybe seven more times, but now I have done
it, and it’s not a mystery any more, and I have a small sense of conviction
that I can do it. It’s hard, I knew it would be hard, but now that I have done
it, I know I can do this. I don’t know yet if it will be enough; no one knows
if it will be enough, but I will do it, I’ll be back. I turn around again and
resume my shuffle to the elevator.
Monday, July 2, 2018
Stuff I Read in 2018
Forest Dark 3
Angel Baby 4
The Chemist 4
The Girl in the Window 5
Anything is Possible 4.5
The Satanic Mechanic 4
You Belong to Me 5
Sunburn 4.5
The Finder 4
Shining City 4.5
Are You Sleeping 3
Today Will Be Different 4.5
Goodbye Vitamin 3
The Last Flight of Poxl West 3
IQ 5
Righteous 4
The Flight Attendant 4
Young Jane Young 4.5
Lawn Boy 4
The Mars Room 4.5
How It Happened 4.5
It Ends With Her 2
The Secrets She Keeps 4.5
The Word is Murder 4
Still Lives 4
Wednesday, January 3, 2018
Stuff I Read This Year - 2017
Welcome to my second and maybe
annual summary of books from the year. Hope it helps you find something you
like, or at least avoid a dreadful mistake!
It was an up-and-down year in many
ways, and my reading experiences mirrored that. For some reason I read almost
nothing in the first half of the year, then I went on a binge over the summer,
then a drought again for a few months, and finally another binge to close out
the year. Every book I read but one was released in 2017, though the exception
was notable. And they were all fiction except one, which is no surprise since
reality sucks. I do read lots of non-fiction articles, which is about all I can
stand as they leave me stunned and depressed. But if you like interesting
articles, I suggest Don Van Natta’s “Long Reads” weekly email compilation of
recommendations: http://www.sundaylongread.com/.
The first book I read when I broke
my bookfast was “Since We Fell” by Dennis Lehane. The first half was great, the
second implausible and silly. I gave it CCC (out of CCCCC). But things rapidly improved, I read
several “Literary” crime/suspense novels that I liked: “Magpie Murders” CCCC1/2C , “Celine” CCCC, “The Good Thief” CCCC, and “The Twelve Lives of Samuel Hawley” CCCC1/2C. In particular I liked “Magpie”, which was a mystery within a
mystery, and “Thief” and “Hawley”, which were unique and fun, and very well
written.
By the way, I categorize the novels I read into two types: “Literary”,
which means the author is actually using some symbolic language and I have to
pay some attention while reading, and “Mystery”, books I consume like M&M’s
that generally leave me feeling sugar buzzed and queasy. But they are a great
rush while they are going down. I’ll try to point out which were which as I go
along.
A couple other suspense novels I read which got high praise were “My
Absolute Darling” and “Sycamore”. I liked them (CCCC), but not as much as the critics did. They
would fall in the Literary group.
One of my 2017 favorites was my only non-2017 selection, “A Gentleman in
Moscow”. It’s about a Russian aristocrat who is exiled to the nicest hotel in
Moscow; in other words, it’s bit of a fairy tale, sort of a cross between “War
and Peace” and “Eloise”. But it describes some Russian history, and Towle
creates enchanting characters. I really enjoyed it, gave it CCCCC.
A few of the tasty Mystery stories I wolfed down were “Don’t Let Go” by
Harlan Coben, who is an absolute master, “The Chemist” by Stephanie Meyer of “Twilight”
fame, and “Right Behind You” by the prolific Lisa Gardner, all of which I gave
about CCC1/2C. I will say that this year I developed more of an appreciation for Coben
and his peers in this genre; they are often very good writers who probably just
prefer to write popular stuff instead of stuffy stuff. Coben’s books have more
twists and turns than the road to Hana.
“The Dry” (CCCC1/2C) was maybe my favorite Mystery of the year, being more Literary than
most. It was great to learn that people in small towns in Australia are just as
cruel and duplicitous as their counterparts here in the good old USA.
The second of my top three of the year was “Beartown”, CCCCC. Beartown explained that people in small towns in other countries are not
only as cruel and duplicitous as we are, but also as insane about sports, in this case hockey. Bachman is a smart and amusing writer, and this
latest one is warm but painful too. Good stuff. I might have to try "A Man Called Ove" again.
“Manhattan Beach” (CCCC) by Jennifer Egan was a very interesting and maybe realistic historical piece
about the World War era in New York City. She’s uniquely talented, and this one
is a major departure from her more experimental books like “Welcome to the Goon
Squad”, which has a remarkable chapter entirely in PowerPoint.
A couple of quirky books I liked, and I like quirky books, were “Midnight
in the Bright Ideas Book Store” and “Sourdough”, both CCCC. “Sourdough” was particularly offbeat, and
left me hungry for more from Robin Sloane.
During my end of year reading binge, on airplanes and in Hawaii I read “Bluebird,
Bluebird” a mystery that I gave CCC1/2C, and “So Much Blue” (CCCC), which featured a painter who was wrapped
in layers of melancholy. On the flight home I consumed “Less”, (CCCC1/2C), the life story of a gay writer which I liked for its depiction of a
culture that I know little about. It was heartfelt and moving, and I liked
it. The Washington Post named it one of their top 10 in 2017.
Last but not least was my third favorite book of the year, “The Smack” by
Richard Lange, the story of a mid-level lifetime grifter. The book is not
extraordinary (or “Literary”), but it is very well written and has
wonderful characters, and I really liked it - CCCCC. It’s another great example of a talented writer
who chooses to write very straightforward books; I can’t wait to go back and
pick up some of his previous works in 2018.
So that’s my mediocre summary of a mediocre year of literary
explorations. At least writing it gave me an excuse to sit down at the keyboard
again. I hope you’ll find something you like in it, and please be in touch if
you would like to share your thoughts. I wish you a happy fictional year in
2018!
Thursday, November 9, 2017
Last week I had a CT scan and appointment with my oncologist at Hopkins. Good news - my tumor has shrunk slightly and there are no new ones, the four rounds of chemo in September and October seem to have been effective. The bad news is that he suggested that I do 8-12 more rounds, though he did recommend a 20% lower dose. But ugh, nevertheless.
So in the new tradition of shopping for a "yes", I went to see my local oncologist, Dr. Wadlow, who oversees my chemo treatments. Dr. Wadlow, as I have mentioned before is heir to Drs. Ben Casey and Kildaire in charisma and compassion, so I was hoping for a more palatable recommendation. And I got it; he suggested that I move to oral chemotherapy, with a daily dose of Xeloda, which is one of the four nasty concoctions that I've been taking in the previous chemo sessions. He is concerned that the Folfirinox (the acronym for all four drugs) treatments have been taking too much of a toll on my body in terms of neuropathy, bone marrow depletion, etc, not to mention making me a depressed and crabby old fart.
So, on Monday I will start with Xeloda. It has possible side effects, too: fatigue, mouth sores, hand irritation, and diarrhea, to name just a few. But still it should be much easier than Folfirinox. So, I am relieved and feeling positive about going forward. In fact I feel better today than I have since August. With luck the side effects will be minimal, and I can manage this indefinitely. Stay tuned, and a Happy Thanksgiving to you all! We have much to be thankful for.
So in the new tradition of shopping for a "yes", I went to see my local oncologist, Dr. Wadlow, who oversees my chemo treatments. Dr. Wadlow, as I have mentioned before is heir to Drs. Ben Casey and Kildaire in charisma and compassion, so I was hoping for a more palatable recommendation. And I got it; he suggested that I move to oral chemotherapy, with a daily dose of Xeloda, which is one of the four nasty concoctions that I've been taking in the previous chemo sessions. He is concerned that the Folfirinox (the acronym for all four drugs) treatments have been taking too much of a toll on my body in terms of neuropathy, bone marrow depletion, etc, not to mention making me a depressed and crabby old fart.
So, on Monday I will start with Xeloda. It has possible side effects, too: fatigue, mouth sores, hand irritation, and diarrhea, to name just a few. But still it should be much easier than Folfirinox. So, I am relieved and feeling positive about going forward. In fact I feel better today than I have since August. With luck the side effects will be minimal, and I can manage this indefinitely. Stay tuned, and a Happy Thanksgiving to you all! We have much to be thankful for.
Saturday, November 4, 2017
Body Chemistry
A few weeks ago I started chemotherapy again for the second
time, the first being in 2015 when I underwent twelve rounds to treat
pancreatic cancer. It went about as I expected. During the 48 hours of
infusions and the following two days, I felt heavily drugged and crushingly
fatigued, and my stomach churned with nausea and diarrhea. I spent most of five
days in bed. Since the fifth day I have gradually gotten better, though my
energy level is still low and I continue to have stomach discomfort. I feel
pretty good now, nine days since the infusions ended, so I was recovered enough
to do it all again the following Monday. But chemotherapy certainly hasn’t
gotten any easier this second time around.
I’ve been thinking a lot about the chemicals in our bodies
this week, and coincidentally I read a couple of interesting articles that
further stimulated my thoughts. I was trying to put all of it together into a
coherent essay, but I’ve decided to not worry about coherency and just start writing.
About three days into chemo I started taking OxyContin
again. I took Oxy throughout chemotherapy in my year of pancreatic cancer; the pancreatic
tumors gave me a unique searing pain in my upper abdomen, and Oxy really helped
with that as well as simply making me feel better. I found pretty quickly that
if I missed a dose, not only was the pain more troubling, but also I felt
headachy, lethargic and depressed. In other words, I became dependent on the
drug pretty quickly. Back in 2015 I was concerned about how I would get off of
it when the time came, but at that point I was a lot more focused on other
things like whether I would be alive long enough to care. Eventually I was
taking 30 milligrams a day, a relatively small dose. And about a month after
surgery in the winter 2016, I was able to stop taking Oxy without too much
difficulty, I just dealt with a few days of sleeping poorly and feeling
irritable.
This time around I am not having any cancer-related pain,
but I was feeling really drained and depressed
last week and experiencing the queasiness and cramping in my gut, so I
tried Oxy anyway. I immediately felt much better; the gut clenching and nausea
stopped, and I felt more alert and vital. So I’ve continued to take it, and it
really helps, and I can feel the difference when it wears off. I still worry
about becoming addicted, but let me tell you, when you feel lousy and depressed
and you know there is a little white pill upstairs on the night table that will
fix it, you don’t second guess for very long.
One of the things I noticed the first time I went through
chemo was that the chemicals suppressed my testosterone, and I observed several
interesting effects. Of course, I also thought I might be dying, so it’s not very
clear what was causing what. But, I saw that I became a lot more emotional; I
felt more affection toward the people around me and my world. I also felt more
sadness, and I reacted more to events in the world. I stopped watching movies
and TV shows, they affected me more and I couldn’t stop the images from
flooding my brain. I also became more passive and agreeable, I couldn’t stand
any sort of conflict. With my new passivity, I remember thinking on many
occasions, why can’t we all just get along; there is so much to be grateful
for, what is there to fight about?
As I have written before, the year of cancer was emotionally
overwhelming. I go back and read my blogs and it brings me to tears still.
After surgery in January of 2016 I went through a period of
depression, which I learned is almost a given after what I had gone through, so
I tried taking Zoloft for a while to address it. I didn’t like it, I thought it
made me duller and less energetic and it didn’t seem to help with my
depression. My anti-depressants made me more depressed. I stopped after a few
months.
Gradually I felt better, though I have still never regained
the vitality of my old life. (Maybe being 60 has something to do with it too?)
But by the time a year had rolled around, when I had fully recovered and stopped
taking all of the narcotics, I also found that I was becoming more aggressive
again. I became more competitive and argumentative; I found that I was getting
more worked up at my daughter’s soccer games, and bickering more with my
family. I could actually observe my personality changing.
One of the models that I have constructed over my life by
which I try to make sense of human behavior is that I see men as always being
in a state of balance between our competitive side and our belonging side. On the
competitive side we are aggressive, driven creatures who are always trying to
gain the upper hand on our peers and rivals; on the belonging side, we are
loving, caring beings who are devoted to our families and friends and would
even stake our lives to protect them. It
seems apparent that both sides have been necessary to support survival and
growth of the human species; we are aggressive so that we can meet our desires
to attract the most suitable mate and to grow and protect our families; and we
are also social and cooperative so we can harness the power of tribes and
communities and live together in harmony. I have come to see it as a yin-yang
between wanting to love our brothers but still establish dominance over them.
It is why we can go out on the rugby field and bash our heads together until
the blood runs streaming down our necks, then go to a bar afterwards and stand
on the tables, and sing together until the cops arrive (a most memorable day I
experienced that helped me put the finishing touches on this model.) I’m sure
it’s also why, among other things, women find us incomprehensible.
As for women, I believe they also have some of this yin-yang
between competitiveness and caring, but perhaps less so than men. I don’t feel
as confident in my model when it comes to women; I don’t really understand how
women think and I never have and never will.
None of these ideas are new or surprising or original; I’m
sure I’ve cobbled the together from a variety of sources. But it is a model
that is very useful for me when I try to understand why we men do the things we
do.
One of the glib comments I make when I am describing this
model to friends is that just about every bad thing that has ever happened to
me has come from my competitive side, and just about every good thing has come
from my cooperative side. True? I don’t know, but I have been thinking about it
a lot. What if all the rotten stuff men do, cheating and fighting and raping
and plundering and warring, all come from that competitive side and our need to
be the alpha male? What if we could do away with it?
We seem to worship it in our culture. I remember thinking as
a teenager, near the end of the hippie period, that we had moved on to an era
when men had learned that being more “manly” was not the answer, that we were
learning to make love, not war. That we had entered an era of enlightenment, where
men would communicate more honestly and freely, and treat women as equals, and
nurture living things instead of destroying them. Sadly, it seems to me that we
instead moved in the opposite direction. Manhood today seems to be about body-building
and six-pack abs and in-your-face tattoos, and buzz cuts. Not to mention that
acquiring wealth and displaying it proudly has never been more in style. It’s
pretty clear to me that the culture turned away from ideals of The Great
Awakening of the 60’s, that today is all about becoming stronger, meaner, and
more ruthless; and loving your brother is for wimps.
I’m sure there are many men who would hear my views with
disgust: just more evidence of the pussification of America. I’m sure they
would say it was the will of men that tamed the planet and shaped it to our needs.
Where would society be without testosterone and the drive to be the alpha? Who
would build things and innovate and create a culture of production and
consumption? By God, we are men, this is our birthright! We build this world,
with its great technology and its indulgences and the opportunities to satisfy
our animal desires. Without men and our lust for greatness, what kind of world
would it be?
What kind, indeed, I wonder. I am very concerned about the
future of human beings on planet Earth. I believe the challenges that loom
ahead of us are daunting: climate change, overpopulation and resource
shortages, the threat of nuclear confrontation, the possibility of untreatable
diseases and pandemics. All of these are, at their roots, driven by the animal
instincts of men, for more power, more wealth, more indulgences, and more trophies
of status. Our culture sneers at the notion of living in harmony with our
environment; we believe we are too smart to be held back by the mere constraints
of nature and that we can always innovate our way out of any problems we create
along the way. And so we grow and consume at an ever more voracious rate, with
world population nearing 8 billion, soon to be 10, soon to be 12 or 15 billion
people, without a thought that this planet simply cannot support that many
human beings. I am so concerned about the future for our children, and indeed,
our entire species.
I didn’t really intend to go off on a rant about the end of
civilization. This piece is supposed to be about how we are all really just big
sacks of chemicals, and though we think we are creatures of free will and
thought, changing that mix can change who we are. As I write this I am in now
in the later stage of my two week chemo cycle; my stomach is churning like a
garbage disposal full of gravel, I have a persistent throbbing headache, and
when I close my eyes I feel like I’m on a gently rolling lake. Chemo-state reminds
me most of one of those really special hangovers that come from mixing all three
of the major alcohol groups, which I guess is fitting since chemotherapy is just
another type of chemical poisoning, in my case with four different powerful
drugs. I’m a very different person during chemotherapy: passive, jittery,
depressed, and very anxious. If someone so much as raises his or her voice
around me it throws me into a tailspin.
Perhaps the most difficult part of it all is the depression.
The chemicals seem to have been formulated to produce a constant, penetrating
state of depression. My chemo mind is hyperactive, and the thoughts that keep churning
are sadness, worthlessness, frustration, regret, fear - a whole cornucopia of
desperation. I know these thoughts are not “real”, that they are drug-induced
and not responses to outside stimuli, so I feel like I should be able to will
my way through them, to accept that this is just what the drugs do. But they
are persistent, vicious little buggers.
When I was young and foolish I experimented with
recreational drugs, including one I choose not to name. My first experience
with it was an awesome, enlightening ride; I reached a state where I suddenly
knew that human beings were truly beautiful and that I felt love for us all. I
could see that most, if not all of us, had shielded our inner beauty under shells
of cynicism and mistrust; but I could also see that we all have the capacity to
shed those shells and express our inner perfection. I felt that we had a common
connection, that we had evolved from a core organism that had shared it’s
essence with us all. Of course I did eventually come down and I resumed seeing the
people around me as I had always seen them before, but the most wonderful and
profound thing was that I remembered
what it felt like to see them as holy and beautiful. And I have never forgotten
to this day that we are all essentially beautiful creatures who have the
capacity for pure love and perfection, despite the shells that we build up
around us.
Since then I have read many articles about this type of drug,
and the accounts from people who have tried them seem to be overwhelmingly
positive. So many of them report reaching a similar state of bliss, of it being
one of the greatest experiences of their lives. Their accounts seem very
similar to mine, that they felt an outpouring of love and a sense of oneness
with people and the earth. More recently, I’ve read of research that shows these
drugs have been very effective at treating profound depression and
post-traumatic stress syndrome. These chemicals seem to have extraordinary
potential for good.
I don’t know what else to say about that. We live in a
culture where taking the drug I described is a federal crime, even smoking a
joint is still illegal in most places. But drinking alcohol is heavily
promoted, and opiates are so easily available that millions of Americans have crippling
addictions. So we Americans don’t have an aversion to taking drugs, we just choose
the ones that cause ruinous addiction and generate enormous profits over the
ones that produce serenity and bliss. Sometimes I wonder what would happen if
we just put the stuff in the water, wouldn’t that be an interesting experiment?
Of course the most important way in which we acquire the
chemicals in our bodies is by the foods we eat. I’m sure that most everyone
understands now our food is less nutritious and full of lots more questionable
stuff than the more natural plants and animals that our ancestors ate. In light
of that, I was impressed and uplifted by this article about how The Netherlands
is at the forefront of efforts to improve farm productivity and improve the
quality of their output: http://www.nationalgeographic.com/magazine/2017/09/holland-agriculture-sustainable-farming/.
It’s nice that we are reaching widespread awareness about the importance of
eating better, but efforts like these are still very few and far-between.
And, shortly after I read that one, I came upon this
depressing piece about a new scourge that is impacting the nutritional value of
our crops: http://www.politico.com/agenda/story/2017/09/13/food-nutrients-carbon-dioxide-000511.
Just one more effect of climate change that millions of Trump-supporting
Americans can dismiss as a libtard plot to enrich those money-grubbing
scientists (and Al Gore).
Finally, there was this disturbing article about the decline
of insect populations in Germany: https://www.washingtonpost.com/world/europe/buzz-off-german-study-finds-dramatic-insect-decline/2017/10/19/6a087d40-b4c8-11e7-9b93-b97043e57a22_story.html?utm_term=.8c337edf1410.
It doesn’t really fit with my theme of chemicals, but it is peripheral to a
couple other things I touched on. And it does seem to be pretty important.
So that is my rambling piece on chemistry. I do wonder if we
could change the world if we could somehow reformulate ourselves to be more
caring, loving creatures. But I suspect that most people would think I’ve lost
my mind. It’s quite likely that I have.
Friday, October 27, 2017
I’ll probably write something soon about what I consider to
be my new reality, but for now I’ll just do a quick summary of the facts.
A couple of months ago they found a small tumor on my liver.
My doctor recommended chemotherapy, and I completed my fourth round this week.
Chemo hasn’t gotten any easier, I’ve been pretty miserable each round during
the chemo weeks, though I’ve felt reasonably good during the recovery weeks,
even playing golf several times. But overall, going through chemo again has
been very challenging (putting it mildly).
Today I had a CT scan to see how I’ve progressed. The good
news is the tumor has shrunk and there are no new ones, so my doctor felt it
was as good as I could have hoped.
On the other hand, he described to me today that I need to
stop thinking in terms of being cured of cancer. Pancreatic cancer, he explained,
almost never goes away entirely. It almost always reoccurs, and is usually
present even when undetectable. I have to start thinking about managing cancer
instead of being cured, and it is likely that I will be receiving treatment intermittently
for the rest of my life. So he is recommending that I continue with chemo for
now, probably 8-12 more rounds. If I am fortunate, I may again have long
periods where I don’t have to be in treatment, such as the 19 months I had
between my surgery in 2016 and this reappearance.
He suggested that we cut back on the dosages of the four
chemicals that I receive by 20%, which should make it significantly easier. He
also said I can lengthen the time between treatments to 3 or even 4 weeks,
which also is very good news; having 2 or 3 good weeks for every bad week will make
a big difference for me.
So, it was quite an impactful day. It is, as I described, a
new reality. But I still look forward to being around for a long time, and
making the most of every day.
As always I love hearing from you, at rabraham1@cox.net or by text or Messenger.
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