Tuesday, January 30, 2007
Well, It's Done...
I've gone and joined the ranks of bald supervillians. Hop on over to 'Pics & Links and see if you can tell me apart from
Lex Luthor.
11:14 am pst
On Hair, Again
Five days later, and my hair comes away from my scalp in larger and larger clumps. The pressure of the water in the shower
sends strands sliding, spiraling down the drain. A brisk towel-dry is no longer an option; even brushing or combing must be
approached gingerly. What last Thursday was a sudden and bittersweet indicator that the Taxol was doing its job and inducing
cell death (apoptosis) throughout my body is by Tuesday morning an annoying, ofttimes unnerving squall of sink-clogging, countertop-littering
proportions.
So I think it's time for it all to go. The hair on my head, that is. Eyebrows, eyelashes, even my razor stubble is falling
out, but I'm not going to pull a Bob Geldof or anything...
6:28 am pst
Misc.
New link on the Pics & Links page - using Google's amazing satellite maps, you can now bore a hole right through the planet
and find out if you really WOULD come out in China. If popping out in the Indian Ocean doesn't excite you, then just playing
with Google's maps should...I spent the entire morning obtaining aerial views of my various childhood homes...
Also, after being enormously lax for far too long and allowing Tamara to handle all of our 'Thank You's,' I am now endeavoring
to resuscitate the 'Shout Out' page/concept. Unfortunately, fatigue and the lingering effects of anesthesia and narcotics
on my memory preclude my working back in time; with apologies to all and sundry, I am simply going to start fresh, today,
in the here and now.
6:12 am pst
Monday, January 29, 2007
Book Review
That's right - a book review! No cancer content whatsoever! Actually, I'm too fatigued to write an actual book review, so
let's call this what it is: a ringing endorsement for author Erik Larson.
The same man who brought us the #1 NYT's bestseller, 'The Devil In The White City,' has now gifted us with 'Thunderstruck,'
another nonfiction, absolute tour de force of a page-turner.
'The Devil' tells the true tales of architect Daniel Burnham, who brought the world the 1893 Columbian Exposition, aka the
Chicago World's Fair, and serial killer H. H. Holmes, who may have murdered and dismembered as many as 200 people in his (literal)
hotel of horrors.
This juxtaposition - a complicated and conflicted hero struggling to realize perhaps THE shining achievement of his era vs.
an educated and charming murderer whose nefarious deeds, once exposed, would shock the world - is, quite simply, brilliant.
And since this formula worked so well in 'The Devil,' Larson turns to it again in 'Thunderstruck,' which recounts the saga
of the passionate, driven, and rather heartless Guglielmo Marconi and one Hawley Harvey Crippen - the infamous Dr. Crippen
- the kind-hearted peddler of patent medicines convicted of poisoning and dismembering his wife, whose flight from justice
and eventual capture became an international manhunt facilitated by - what else? - Marconi's wireless.
Larson's prose and his ability to bring historical eras to life are unsurpassed - you will FEEL the excitement of the burgeoning
new metropolis called Chicago! you will SMELL the odors of Edwardian London! Please! Go read these books!
9:55 am pst
Thursday, January 25, 2007
And Here We Go...
Sitting in traffic on Moreland, I glance in the rearview mirror, run my fingers through my hair, and - schlik! - painlessly
come away with a small clump of my salt-and-pepper locks.
Shit.
My hair is falling out, and right on schedule.
I sit in the traffic on Moreland and cry.
Why am I crying? Last time I was in treatment I was disappointed that I DIDN'T go bald, that I couldn't wear that visible
badge of cancer treatment with pride and distinction - I WANTED to lose my hair. Now that I am - now that a glabrous scalp
is looming - it feels less like a badge and more like a brand: harsh, silent, unavoidable witness to the fact that I do, in
fact, have cancer.
Not that cancer is causing my hair to fall out...Taxol is. I don't know if that's just irony, or something more troublesome:
the fact that cancer itself has done nothing to me, and all the symptoms and side effects and sufferings, right down to the
archetypal bald pate, are the result of the drugs and toxins with which we are fighting the cancer.
How to proceed? Shave it all off, or allow and experience the slow molt? Unthinking, I run my fingers through my hair, and
my keyboard is literally showered with strands as I pull my hand away. Molting may prove too messy...
9:19 am pst
Tuesday, January 23, 2007
SLEEP! Glorious SLEEP!
All hail the power of Lunesta!!! I slipped into blessed unconsciousness perhaps thirty minutes after taking the tiny blue
pill with little or no struggle, no tossing and turning. A single awakening six hours later, to groggily and ineffectually
deal with a tangle of sheets and pillows, and then another three hours of dark, motionless, crepuscular slumber!
4:13 am pst
Monday, January 22, 2007
Woot!
Not only am I feeling much better (albeit easily - indeed, ridiculously easily - fatigued), but this morning's blood work
confirms that my system is managing quite well. My white blood cell count was flagged in red, but because it was HIGH, not
low - the Neulasta is not only working, it is working like a dog.
Dr. Fanucchi - in rare, approachable, smiling and chuckling form - sent me off with a hearty handshake, pleased with my labs
and clearly delighted to see the swelling in my leg completely gone. Next poisoning: Friday, February 2.
I also managed to get a free sample of a new sleep aid - Lunesta...my sleeplessness and abbreviated sleep having persisted
since suddenly emerging last Wednesday. I am hopeful...
11:49 am pst
Sunday, January 21, 2007
Podcast
Long overdue, on the Pics & Links page: a link to the GLMA's 'Cancer In Our Lives' website, which now includes - scroll
down or search for 'Putting a Face on Cancer' - the podcast (mp3 audio file) of the plenary panel I was on out in San Francisco
last fall, as well as a link straight to the mp3 file itself.
I have already posted the text of my portion (11/04/06), so you needn't listen to me, but please make a point to download
the file and listen to the second speaker (third, if you count Dr. Berry, the moderator)...if the articulate and passionate
words of Heather MacAllister do not engage, enrage, and move you, perhaps nothing will. As Heather herself cautions, please
do not mistake her passion for stridency.
Heather - a 38 year-old femme living with Stage IV ovarian cancer - recently made the breath-takingly brave, painful, lonely,
terrifying decision to come off chemo - after over two years of near-continuous treatment - and enter hospice.
6:38 am pst
Friday, January 19, 2007
Furry Companions
A brief word to first say that I am feeling much better today, and then to make mention of the furry companions who are also
helping me through this ordeal by selflessly warming my bed, sleeping on my head, and kneading my chest and belly at 3am.
Smudge, our white cat, weighs approximately 22 pounds. He had a black smudge on his forehead as a kitten, but has since outgrown
it - he now maintains a pure, fastidious whiteness. Irony. Crush would be a better name now, as he is a brute. A heifer. A
monster. Further irony: our other cat IS named Monster, and he is as sweet and docile as a lamb.
During this latest bout of illness, Monster has become especially close to Daddy, forever at my side, sleeping on pillows
above my head, often approaching and meowing questioningly, as if to inquire how I am feeling. I have no doubt whatsoever
that this cat knows I am sick and cares about my wellbeing.
6:57 am pst
Thursday, January 18, 2007
A Little Blubbering & Self-Pity
Why is this happening to me?
Why should my daughter have to suffer like this?
Why should my family have to suffer like this? Why must my friends?!
Why is it cold and rainy and potentially icy, when TODAY was going to be my one outing a week - a trip to the mall! - where
I could sign out a motorized wheelchair and have some small degree of freedom and independence?!
How did my life become so reduced in scope that I, of all people, look forward to a daytime trip to the mall - the mall?!
- and am heart-broken when it falls through? (I let this happen, didn't I?)
I am feeling VERY sorry for myself this morning...coming off the Compazine - or perhaps taking two Benadryl instead of one?
- something left me completely, utterly sleepless. All night. I have never unintentionally gone sleepless in my life, and
it was a whole new form of horrible.
(Oh, but I just want to be well! Not healthy as an ox, but just well, and sitting at my desk and contentedly sipping my steaming
mug of coffee and watching the rain and tapping away at the keyboard and blithely unaware and not living in constant fucking
fear that some stupid CANCER is going to tear me out of this world before I am ready!)
This is rather odd, since yesterday was such a good day, so upbeat. Did you see the news? The American Cancer Society was
having a field day in the media in the wake of new figures showing that, despite an aging population, we are starting to win
the fight. A dear friend sent me an interesting science article about a promising new treatment, and I felt hope.
This morning, of course, all hope is fled, washed away in a freezing rain...
4:55 am pst
Wednesday, January 17, 2007
News from the Front
After just a few days of mild stomach pain and some achy stiffness, I appeared to be doing well...until the Nightmare Tentacle
Limbs set in.
(Jimmy legs. Restless legs. Pins and needles. Peripheral neuropathy. Twitching. RLS. PLMs. None of those do it justice. Hence,
Nightmare Tentacle Limbs. NTL.)
My arms and legs have been going insane, twitching and jerking and writhing. As a result, I've been going insane, and I've
been driving Tamara insane along with me, as I literally hop in and out of bed five times in one minute, thinking: OK, this
is it! I can lie still! I can relax! - only to be bested yet again by the Crawling Insect-limbs of Bedlam (CIB).
(No, my extremities aren't twitching involuntarily...it's the insects inside eating their way to the surface that make me
twitch voluntarily, albeit spasmodically.)
Cause? Unpleasant, rare (AHAHAHAHAHA!) side effect of Compazine, the medicine I was prescribed for nausea. The great irony
is, the nausea wasn't even that bad...I just took the Compazine out of fear of something worse...
Solution? Benadryl, and lay off the Compazine. My brilliant wife (someone nominate her for a Nobel...) recommended Benadryl
several days ago, and it HAS been allowing me to sleep. Now to stop taking any and all Compazine and get the Lovecraftian
Writhing Appendages (LWA) out of my system...
10:25 am pst
Friday, January 12, 2007
And The Back-up Team
My dear friend Carol e-mailed a valid concern and excellent question: what about anti-nausea medication, etc.?!
"Fantastic Four" may have been a tad glib.
Before they hit me with the Carboplatin and Taxol this morning, there will be a good hour dedicated to the administration
of yet more medications - more anti-inflammatories, anti-biotics, Benadryl, and Phenergan, among others.
No on ever mentions Willie Lumpkin, either, but where would the Fantastic Four be without their mail? :)
3:51 am pst
Thursday, January 11, 2007
My Fantastic Four
As stated earlier, treatment will consist of four drugs, although only two of them are chemotherapeutics, destroying everything
in their path; the other two are there to try to contain some of the damage.
Carboplatin: introduced in the late 1980s, carboplatin is similar to its parent drug, cisplatin, but is associated with far
fewer side-effects. It is much gentler on the kidneys, and nausea and vomiting tend to be less severe. The big drawback to
carboplatin? It's myelosuppressive properties. Carboplatin slows - and can even stop - the bone marrow's production of blood
cells, which in turn leads to increased risk of infection and anemia.
Taxol: derived from a compound isolated from Pacific yew bark, Taxol stops cell growth by paralyzing the microtubules which
comprise a cell's 'frame' or 'skeleton' - the cell can no longer shift or grow or successfully divide. Taxol has an interesting
history. Back in the late 1950's, the National Cancer Institute (NCI) called on the Department of Agriculture to collect thousands
of different plants and test for anticancer properties. One of the botanists involved collected twigs, bark, and needles from
the Pacific yew in a forest near Mount St. Helens. Paclitaxil (the active compound isolated from these samples; Taxol is the
trade name) was found to have anti-tumor effects on a host of different cancers in lab rats. Unfortunately, the Pacific yew
grows sloooooowly, and it would require cutting down and processing 6 100 year-old trees to treat one patient; fortunately,
a number of different techniques have been developed to derive therapeutic levels of paclitaxil from related yew species.
So those are the two killers on my team.
Neulasta: taken the day after chemo, this drug stimulates the production of white blood cells which carboplatin will be busy
turning off.
Dexamethasone: a powerful steroid, 40 times more powerful than hydrocortisone, dexamethasone is an anti-inflammatory (good)
and immunosuppressant (bad!). Although the pros of the anti-inflammatory response outweigh the cons of immunosuppression,
the side effects on this one are scarier than those on the chemotherapeutics - this one has me worried. Apparently, when you
are aggressively killing cells, you are creating quite the inflammatory response, and this drug can put out that fire.
1st chemotherapy session: 7:45am tomorrow.
5:17 am pst
Tuesday, January 9, 2007
Remembering Tia
She came to group late, when she came at all, breezing in behind a shiny veneer of practiced, flip aplomb.
Occasionally, that veneer failed her, and we saw why she was there, saw her fear and isolation and anger and pain.
She wanted us to see beneath the veneer, wanted and needed to connect, to be reached, yet being that vulnerable terrified
her - as quickly as she appeared, she would retreat.
She was only 28, hip and single, and she had cervical cancer - a very aggressive, very advanced cervical cancer. Treatment
was brutal, and she was thin, growing thinner. Radiation, chemotherapy, the loneliness of brachytherapy, of isolation in a
hospital room with radioactive beads packed between her legs.
She was feisty, creative, original: Going into a surgery, she wrote a note, folded it up incredibly small, and managed to
maintain the presence of mind - even as the Versed and Fentanyl seeped into her system - to steal some surgical tape from
her arm and tape the note to her inner thigh, for the surgeons to discover later.
The tumor shrank, offering hope, but treatment had only just ended when the chest pains began, chest pains that proved to
be a massive tumor, aggressively permeating her chest wall. Further chemotherapy was offered, but the doctors were not optimistic.
Tia died on New Year's Eve, and the world is poorer for having lost this savvy, sassy young lesbian, so full of life and potential.
5:20 am pst
Friday, January 5, 2007
Start Date
Chemo will start this Friday, January 12. There is some trepidation - how sick will it make me, and how will it make me sick?
"Aches and pains" - that SOUNDS more manageable than the gastro-intestinal nightmare that was radiation, but IS
it? How does it feel, having one's hair fall out...?
Mostly I am just eager to get the ball rolling, to be doing something, to be fighting. My leg is doing a bit better - the
foot looks like a foot again, the calf looks more like the right calf. To the extent that enlarged lymph nodes are causing
or contributing to the obstruction and swelling, chemo promises to help reduce the swelling further.
This morning I got a measure of just how much swelling there really is: my weight is up 12 pounds. I am carrying around an
extra 12 pounds of fluid in my left leg.
Boggle.
As you know, my e-mail correspondence has been poor, and my posting here has also been minimal, largely because I am bedridden,
and cannot sit for any length of time. So give it up for my brother-in-law, Doug, the latest techno-geek to fix our ever-fickle
wireless network - I now have a laptop I can take to bed! I am hoping this will result in more posts and better correspondence
in the days and weeks to come...
12:16 am pst
Wednesday, January 3, 2007
And What We Read
So the leg thing continues to follow us...
Tonight, reading in a chapter book at bedtime, we learn that Snow White (the pony, not the heroine of Grimm fame...) may die
from the wounds she sustained to her leg from the barbed wire she got caught in.
"Oh, God," I think, unsure whether to laugh or cry, "Here it comes..."
Sure enough: "Snow White might die, just like Daddy..."
Further, more productive dialogue follows, covering such vital elements as the fact that, unlike Snow White, Daddy is expected
to make it through the night, i.e., he will not be dying "soon."
This has me all torn up on so many different levels. That Alder is dealing with this daily, and looking for parallels everywhere,
in everything. That her understanding is (understandably) quite limited. That she needs more information, and children's books
may afford us one means of getting her that information. That my swollen leg terrifies her, in a way countless non-visible
manifestations of my illness - which have terrified her mother & I in months past - could not.
Obviously, I'll need to read ahead and make sure no horses or ponies get put down because of broken or infected legs...
9:28 pm pst
Tuesday, January 2, 2007
What We See
This evening, Tamara is brushing out Alder's hair in front of the bathroom mirror; I sit behind both of them. Noticing me
struggle to sit, Tamara notices that my left leg appears bruised in several places.
"Oh, sweetie," she says, "Your leg looks terrible. It looks bruised."
"Some discoloration is normal," I casually offer.
"Daddy could die," Alder states, face somber.
Inexplicably, perversely, I chuckle; the swelling looks horrible, and it is very painful, but with the clot managed with daily
injections, my big, fat, elephant leg isn't likely to be what kills me, right?
Alder's serious face stares back at my chuckling, grinning one in the mirror.
"It isn't funny," she says. "It's very sad."
Oh God, but it is. Terribly, horribly sad. That this cancer could kill me. Worse: that a six year-old should carry that knowledge
with her, every day.
It occurs to me that my big, fat elephant leg is the first visible manifestation of "Daddy is sick" which we have
had in a long time. My leg being swollen like this isn't an annoying, inconvenient side effect to Alder; it isn't "just
one more thing to have to worry about." Rather, as a visible, tangible thing - currently, the only visible, tangible
thing - it is a constant reminder and confirmation that Daddy could die.
11:13 pm pst