The Rainbow Connection

Friday, August 31, 2007

My friends Amy Chen and Chris Fan are getting married this weekend in the San Francisco Bay Area. Back in October, when I was in Berkeley for Rum & Rebellion's mini-Bay Area tour, Chris asked me to be a part of the wedding. Of course I was honored and said I would. Not long after, he asked specifically that I, and their friend Billie, perform the song for the young married couple's first dance. It would be "The Rainbow Connection," the beautiful tune that opens the Muppet Movie. Remember Kermit, sitting on a log with his banjo -- that one. I've know Chris and Amy since 2001 when we were all interns at Mother Jones magazine. They have since left journalism -- him for academia and her for a career in law. But I was present in the cave -- the sunless room at Mother Jones where most of the interns were more or less stored -- when the couple first met. Fast forward to March 2007. At the tail end of recording what will some day be Rum & Rebellion's second album, I recorded "The Rainbow Connection." "Just in case something comes up and I can't make it," was the reasoning behind the recording. I also thought it'd make a cool gift. Funny -- Paul was actually in Salinas, in the room, when we recorded the song. So here it is. My dear friend, Scott "maestro" McDonald recorded and produced this track. He did a great job mixing the guitar tones (reminds me of Tom Waits' "I Don't Wanna' Grow Up") and devised this ingenious way to record the bass. I chose to mumble the lyrics on purpose because I wanted to give the song a darker tone that reflects the lyrical content (which is kind of twisted, if you ask me). Since I can't do it in person, we'll just do this via the web.
felicidades chris y amy.


(P.S. 3:32 p.m. Still figuring out how to get the MP3 posted or linked or whatever)
(P.P.S. 4:04 p.m. My brother Richard figured it out in about two minutes. thanks richard!)

Ay, mi pelo

Thursday, August 30, 2007

so I started losing my hair.
it's strange. I first noticed it a couple days ago. the bathtub was gathering more and more black hair after I showered. looked like a small dog was washed in the tub.
I'm glad i shaved my head. i don't think I would have taken that very well.
but without the pompadour, there's still plenty of hair to lose.
my beloved t-bird of hair on my chest is thinning.
Phil always reminded I was a hairy beast man. ever seen my legs?
and my father likes to compare my feet to hobbits on account of all the hair. mind you, my father also called me meatball the day after my testicle was removed.
you gotta' have a sense of humor.

Hello God, this is Me!

Wednesday, August 29, 2007

I don't practice a specific religion; I find them all wonderful and they all seem to lead to You, God. The one thing I don't get is why I am having Cancer over and over again. Since I do believe in You and I do try to live a spiritual life, I just assumed that You would be watching out for me. When my father died of colon Cancer at the young age of 37, his name was Jim - remember him?, I was sure that You would take his pain and suffering as a "savings account" for me.

Therefore, from the age of five, I walked around pretty confident that I would never get Cancer. However, I was really wrong! My challenges started in 1991 and here it is 2007 and I have now gotten two different breast cancers, salivary cancer, and metastatic salivary cancer in my iliac bone. I have learned words that I never knew before in order to make my way through the trapazoid of the Hospital and its doctors. In case you forgot , the first time I had Cancer, I made seven consultations just to make sure that the doctor had gotten it right. You can never be too sure. I remember being asked "What would I like to do - have a mastectomy or a lumpectomy." My answer was "Neither, Thank You!"

Why was the doctor asking me? I was a Principal in the New York City school system. Ask how I think a school should attend to the safety, emotional and educational needs of the students, then I would have a great deal to say. But Mastectomy? Lumpectomy?

Well, yesterday, I finished a series of tests to determine what is causing the pain and swelling in my left hip. For the first time since 1991 I thought about dying. I wondered how much my body and mind could take. Friends have come and gone, unable to deal with a person with major health challenges. It appears You forgot to tell some people that they should help the less fortunate, not lecture them or give them pep talks about being brave and courageous. That comes with time and experience.

When the effects of the radiation started to impact on my mouth and speech, I lost a fluency of the English language that I loved. But You compensated me at birth with the gifts of sight and sound and I learned to write as I was growing up. I am discovering that I am not really cursed. or doomed. I have been booked on a journey, not of my choosing, that takes me places that most people will never go.

So, God, I bet You thought I was angry at You. NEVER! Well, I am not thrilled but I do know that I have been blessed by You with a life that has weeded out the faint of heart and that has given me the chance to offer help and support to others so that someone can help them on their cancer trip.

God bless us all, AMF

The First Third

I completed my first full round of chemotherapy yesterday. Yeah!! break out the beer, tequila, champagne and I'll raise my IV in toast.
seriously though, the first round is done. Dr.Ahmann, my oncologist, seemed pretty impressed with the way I'm holding up. he reiterated how heavy the chemo doses are, noting that if any of my doses were doubled they would literally kill me. of course he said this in front of my mom.
otherwise things are well. he encouraged me to exercise as I feel up to it (meaning walks or a bit of yoga) and he gave me a prescription for ativan should I get really sick again. I don't know what Ativan is made of but it knocks you out pretty solid.
Second round begins Monday morning (yes, Labor Day) at 8 a.m. with blood labs (routine drawing of my blood to check on my white blood cell count) and then three to four hours of a chemo. cocktail.
should you care, here's the schedule for the second round of chemo.:
Sept. 3 - Sept. 7th (three to four hours each day)
Sept. 11 (a little more than one hour)
Sept. 18 (blood labs, appointment with Ahmann and about an hour of chemo -- pretty much all morning and into the afternoon)

Zofran not Compazine

Monday, August 27, 2007

So here is some real advice for others who find themselves in chemotherapy.
As I've mentioned on this blog, I was pretty sick last weekend. the symptoms I had -- restless legs, nausea, motion sickness, fatigue -- were likely an afterthought of my chemo regimen, but also brought on by the anti-nausea pills prescribed me.
initially the docs gave me 10 MG tablets of Prochlorperazine, a generic drug for Compazine. Following my lousy weekend, I had chemo last Tuesday. When I checked in, the nurses asked me how I was feeling and I was honest. I told them about the weekend, the sickness and asked if there was something they could do. Apparently the things I described matched the known side effects of compazine and its generics. They summoned the on-call oncologist (say that ten times fast), who suggested a different anti-nausea drug. Of course the one they suggested couldn't be obtained because my health insurance company wouldn't approve it. After some choice words with those involved, i was given 8 MG tablets of Ondansetron, a generic drug for Zofran. While I've still got a slight sense of dizziness and the drug has affected my breathing (I can't draw as deep a breath as normal unless I concentrated on it), I haven't been sick like i was that first weekend.

the chemo. weightloss plan

After I decided to undergo chemotherapy, I asked my oncologist, Dr. Ahmann, about my diet: what foods should I be weary off with a compromised immune system, what foods are important and should I be gearing up for weight loss. his response was that moderation is key. Treatment has advanced, he said, to the point that patients should be able to eat as they did before treatment. As for raw vegetables, he noted, all food should be properly cooked. He noted that this year he saw more chemo. patients gain weight than loss.
After six days of treatment, I can understand that. I gained seven pounds the first week. what with all the liquids they were injecting, I suppose that was inevitable. I do remember feeling really bloated at the end of that first week. But between Friday, Aug. 17, and Tuesday, Aug. 21, i lost those seven pounds.
This weekend I put on a pair of jeans for church at the mission. I noticed I had cinched the belt to its last hole: I'm not usually that skinny.
of course I'd like to think the bit of weight loss is also due to the fact I haven't had a beer in more than two weeks (of which, Dr. Ahmann said I could have one beer with dinner during chemo).
but I think the chemo. diet is kicking in.
otherwise, I'm eating well: lots of grains, cooked and steamed vegetables, turkey sandwiches, and plenty of high-protein smoothies. In particular I've consumed a ton of nopales con huevos y frijoles.

La Segunda Semana

Sunday, August 26, 2007

Sunday morning coming down, like the old country song, prompts me to reflect on my second week of cancer treatment. I have to say I end the week on a much better note than it began.
A week ago today, I had to leave Lili's Cocina, this wonderful, little restaurant on Tucson's south fourth, without touching the machaca plate on the table. my nerves --legs up to my stomach -- wouldn't allow me to eat. Sunday into Monday I was wicked sick (see the blog post). Monday was better, but I still couldn't sit much because of RLS. The sickness wouldn't allow me to sleep, so i arrived to the cancer center on Tuesday ill-rested. we switched my meds after a discussion with the on-duty doc. and a few nurses and I've felt a lot better since. no more nausea, though the spectre of dizziness is still hanging around. one brownie, letters and visits from friends made it an easy week otherwise. heck, I felt well enough to take my folks to see "Resurrecting the Champ," another movie about a fallen journalist.
I was also strong enough to actually write two letters and read. god, it was good to read. I finished Dos Pasos' "the big Money" as well as a short history of the Tohono O'Odham. Last night I finished the Popul Vuh, the history of the quiche Mayans, written well into the Spanish conquest of their lands which became a never ending occupation. it is a profound book that left me sad with many questions to ask of friends, family and historians.
this morning, after mass at Mission San Xavier, i had breakfast at Las Cazualitas de Tucson.
like I wrote earlier, it's the simple things.
There are some visits on the horizon I'm looking forward too: Adrian, Guadalupe, Julie, Aunt Maria, Gabby, Aunt Pookie, and of course my friends here in town.
On Tuesday, I return to the clinic for blood labs, another round of chemo with bleomycin, and a visit with my oncologist, Dr. Ahmann.

the simple things

Thursday, August 23, 2007

my friend made me brownies. They are good.

A Cancer Top-Ten List (minus six)

Wednesday, August 22, 2007

Since I'm not making it to this weekend's F**K Yeah fest in Echo Park (and apparently neither is Dillinger 4), I've thinking about a list of songs to accompany my chemotherapy. besides, it seems top ten lists and blogs are synonymous.
so here's a list of four songs. i obviously need to come up with more. maybe you can help. the songs are all upbeat, if not aggressive, rock tunes. but any addition need not be rock. I'm still trying to figure out a jarocho song for the list. Lyrically represented are themes of hope and self-determination.
so, in no particular order:

1) "Search and Destroy" from 1973's Raw Power by Iggy and the Stooges.
Tell yourself "I'm a street walking cheetah with a heart full of napalm" and try to not feel strong. The second (and third) verse opens "look out honey 'cause I'm using technology." -- that's right cancer; prayers and chemicals are coming your way.
I think the phrase search and destroy pretty much sums up the scorched earth technique that is chemotherapy.

2) "Attitude" from 1983's Rock for Light by Bad Brains
These are all the words in the song:
"don't care what they may say/we got that attitude/don't care what they may do/we got that attitude/Hey/we got the PMA."
PMA stands for Positive Mental Attitude.
the song is just barely over one minute long.
they don't come any punker than bad brains.

3) "There is a Light that Never Goes Out" from 1986's The Queen is Dead by the Smiths
Of course Morrissey makes any musical list of mine. Despite a chorus the ponders a horrific automobile accident (or two), this song has always inspired me. The final coda from which the title is taken is as upbeat as pop lyrics come.

4) "the Black and The Red" by One Reason
I don't know much about this band, but Scott included this song on a mix CD he sent me. the first verse, about a half-drunk phone call to a friend in the middle of the night, just about sums up our friendship. but the fierce determinism in the simple, bellowed phrase "this life is what you make it" is infectious.

I'll add more as I think up new songs. feel free to add yourself. just no maudlin tunes. I have no interest in self-pity, in pop music or cancer treatment.

Imaging me not passing out

So there's a medical term for my aversion to needles: vasovagal reaction.
There's a whole process that begins with decreased heart rate, lowered blood pressure and the possibility of passing out. according to my nurses at the clinic, it's always a problem with young, healthy, and seemingly macho men.
here's a quick link to an article on managing vasovagal reactions:
Anyway, so before we began yesterday's chemotherapy, the nurses needed to find a new vein for an iv. I told the nurses "I freak out" around needles. at this point, Emily, who is one of my regular nurses, introduced me to this nurse from Oakland who was shadowing her that day. the nurse was nearing her certification in imaging and would use the technique to hopefully overcome my vasovagal reaction.
the nurse asked me to close my eyes, take a few deep breathes, and imagine myself in a calm,familiar and peaceful place.
I pictured myself on the evening of my 24th birthday, at a bar on Isla Mujeres, Quintana Roo, with my narco news cohorts.
given hurricane dean, I wonder if that bar is still standing?
At her direction, I recalled the silver swells on the ocean that night, the way the water was black, a mirror of the sky and all the dancing and singing on the eve of what would be my last night of that trip. I recalled my friends Luis, Andrea, Sunny. I remembered Ugo and the way he danced with his bony elbows. she asked me about the breeze, and me with my fantastic imagination, I could nearly feel it along my arms and chest.
all the while Emily was readying my left wrist for an IV that would be used to inject pre-meds and the days dose of bleomycin.
there was some thing that made me realize they were about to inject me -- maybe an increase in a specific command from the nurse or a slight gap in our dialogue. of course i felt the pin prick.
but when I opened my eyes and found my wrist bandaged with IV in place, i was fine. the prick barely hurt on top of that.
as far as I could tell, imaging worked. hell, I didn't go green (which is my normal reaction) and I didn't nearly pass out.

Here's a link to an article on web md of guided imagery.

Another young man fighting testicular cancer

Tuesday, August 21, 2007

while I was waiting for today's treatment, I came across this story in the Arizona Daily Star by Sarah mauet.
It's about another young man, a student at the UA, fighting testicular cancer.

what you make it

Many of my friends and family have written in regards to my resolve and the attitude I'm taking to recovery.
I suppose I should offer a bit of an explanation, or at least begin a discussion, at this point in my road to recovery.
my attitude is the only one I can conceive as possible and appropriate. from the beginning I was not a victim, but already a survivor. that's the only way, at least how I see it, to move through cancer and gain insight on what is happening to oneself.
if you don't, as far as I can tell, you let yourself become devoured by the cancer.
my frame of mind is not necessarily unique either. i have found it among my parents, the staff at the clinic and all the other survivors receiving treatment alongside of me.
but i don't think war analogies are appropriate either. and certainly my cancer, in comparison to other experiences, is no way similar to a war or conquest.
so along with fighting against positioning myself physically and psychologically as a victim, I have also tried not to get caught up in a 'george versus his cancer' frame of mind. I still don't have the appropriate words to explain why, other than the fact the cancer, welcome or not, is still a part of me and it is a change in my body that will affect my future growth. accepted or not, it is present within me right now. of course, this is much harder to realize than it is said.
so I always appreciate reminds of such attitudes, like the one i got from my dear friend yolanda gonzalez, who told me yesterday not to think of this as my sickness, and though not my wellness, embrace this change and its potential and move forward with my cancer and not necessarily against.
and the notion of acceptance, as in the 12 step variety, i think is key to this attitude.
so I heard a song on a compilation my old friend scott macdonald made for me to get through recovery. it's called "the black and the red" by one reason. it's good, ol' anthemic punk rawk. I'm not entirely sure if the lyrics are in praise of the virtues of anarcho syndicalism or punk rock, or even if the singer is truly bellowing "this life is what you make it."
but for now, for me, those are the words. and that's the point.

Harley Rose Leondia, in 2-D

Monday, August 20, 2007

from Diana:
"Harley Rose Leonida was born on Friday, August 17, 2007 at 8:07 p.m. She weighed 8 lbs. 13.6 oz. and is 20.75 inches long. We think she is adorable. We're all doing great and getting to know each other."

allow me to be selfish a moment, but Harley's birth coinciding with treatment is a good sign to me. I've prayed for this little girl since the day she was first scheduled to arrive.

Sunday was pretty miserable

I'm not going to lie. yesterday was pretty tough and that's why I'm feeling better today than I might normally.
I'm not sure how to explain this yet: what the chemo feels like. Julie's mom said it was like an electronic buzz in your body. that's one way to explain it.
but for me, it feels like multiple hangovers at once. meaning there are multiple vibrations, motions, or rhythms working at once, and against each other, within my body at the same time. the only way to feel better is to get them in sync.
for example, I seem to be suffering from this thing called RLS (restless leg syndrome -- brooks can explain that one!) which makes your leg bounce or move uncontrollably. so my legs want to move like they're running, but my torso is tired like I've worked out all day long and in need of a rest. meanwhile, I've also got a Stye (spelling?) in my left eye. but that's separate, i suppose. it would be easier to handle if it was one motion, or one rhythm, but it's multiple ones, so it's harder to concentrate on where needs to be healed, or where my healing energies should be focused upon.
i got sick around 11 a.m. yesterday, a little after mass, and it didn't subside until 2 a.m. this morning.
but i don't feel like that today. and while I'm not 100 percent, it's better than yesterday, which means today is a good day.

Harley Rose Leonida

Friday, August 17, 2007

bienvenidos y presentamos la Harley Rose Leonida, born 8.75 pounds at 8:07 p.m. en San Francisco.
congratulations Phil and Diana. we love you and are proud of you. and welcome harlita.

Part effing 3

A little something to cheer you lad…

From where I left off…the Navy corpsman (from an xray) found a “mass” lodged between my air pipe and lung. He showed to some Chief, he didn’t know what the fuck he was looking at, and so he sent me across the street to the naval hospital to see this nice doctor…who I can remember her name. I do remember she was a reservist, working on her residency. She was nice…sort of pretty, plan, over worked, and really understanding.

At some point the next day I showed her the xray. The look of WTF???? Would be a running theme for a few weeks. She no idea of what that mass was. And so, the kick in the balls started. She called another doctor friend she knew in Highland Park… an upscale suburb of Chicago. I remember the day…5-5 (week 5, day 5). The good doctor told me that she was removing me from my division for the time being…until this got sorted out.

There is something everyone has to understand. For the past 5 weeks, ive grown very close with those 70 or so lads in my division and for a hand of us like brothers. So when the doctor told me I was headed up to the 10th floor of the hospital to await a ride into town...a small piece of me died that day. Its sounds a bit emo…but, let me continue.
So that afternoon with orders in my hand, I went back to my rack. There were hugs, handshakes, and some very long goodbyes…I knew id never see any of those guys again. It hurt…hurt bad. Later that night, I was in a white hospital room. The kind you see on old 70’s medical shows. There were about 15 other kids in there. All broke to some degree or another. Most had broken legs, arms, or some other fuck up shit. Even worse, they told I wasn’t going back anytime soon…I was stuck.

I was wreck. I couldn’t sleep. In the morning, I woke up to some nurse saying my ride was going to be ready in about 10 minutes. At this point, I’d never put on my dress Blues. So I did..i looked damn good too. Later in the morning I was riding with the duty driver to Highland Park to see another doctor. To make a long story short…he didn’t know either.

So the long process of what the fuck is that in my chest begins.

Rocio and the last day of my first week

My dear friend Guadalupe Rocio Chavez arrived to Tucson last night. the last time we saw each other I was dressed in drag in the middle of rum & rebellion's mini-bay area tour in October. we first met on our way to Ft. Benning, Georgia in 2000 to protest the School of the Americas, now known as the Western Hemisphere Institute for Security Cooperation. democracy instituted through the barrel of a gun. Anyway, we were both USF students then and had a lot to catch up on --- our follies, adventures, heartbreaks and whatnot. it's good to see an old friend, hear her stories from LA and SF.
I'm excited to get to the clinic today and get this week over with. everyday I wake up i count one less day of chemo and one less day of having this damn shunt in my wrist.
I've got the hospital smell all over me now -- on my breathe and on my skin. no doubt it's from having so much saline and drugs and more drugs injected into me. so i especially enjoy showers like i haven't in years.
well, expect more news today as I'm awaiting word of becoming uncle again via the birth of Phil and Dianna's first child.

fire alarm folo

Thursday, August 16, 2007

i worked my sources at the clinic yesterday. turns out Tuesday's fire alarm was set off by a burnt bag of microwave popcorn.

a fire alarm and a 'minor miracle'

Wednesday, August 15, 2007

A few minutes after they gave me my first chemo injection mid-Tuesday morning, the fire alarm goes off. none of the patients believe it's for real, but all the nurses start freaking out, telling everyone it's serious and we've all got to get out of the building... and into the 100 degree heat outside. the nurse unplugs me from my machine, as she does everyone else in my infusion pod, and we make our way through the door. the alarm causes my ears to throb. too much live rock n' roll,i guess. I'm trying to figure how to find my dad and uncle,who are in the lobby somewhere and of course my mom is helping every confused patient she comes across, which is nearly every elderly citizen in the cancer ward.
we make our way outside and people don't know where to go -- some old dude wanders over to the closest shaded bus stop, others hang out in the patio outside the clinic. eventually we're all rounded up in the parking lot, in the sun.
needless to say, people are not happy. i keep hearing complaints about the clinic running out of wheel chairs for its incapacitated patients.that's messed up.
out in the parking lot, i spot my oncologist, Dr. Fred Ahmann. I wander over to him and ask him if this is part of my chemo. He giggles a bit and wonders what happened. Ahmann said in real fire situation, the trucks would already be outside. but there were none. he seemed to think some inspectors who were inside the building tripped the alarm on purpose. later my mom here's a rumor that a microwave caught fire or something. who knows? anyway, Dr. Ahmann asks how things went Monday. I said i was doing alright; just a little tired. "that's a minor miracle," he responds and proceeds to tell me that less than fifteen years ago, the drug prescribed for each treatment, cisPlatin, is so hard on patients they almost considered dropping it altogether. "We had to cheer lead for our patients to keep taking it," he said. Only recently, by his memory, did they begin prescribing appropriate drugs that kept patients from betting sick. so it's good to hear I'm taking it well, he said.
with the fire alarm shut off and it seemingly safe to re-enter the building, we parted ways and I returned to my pod to continue treatment.


Tuesday, August 14, 2007

as my dear friend goes through...something unimaginable...makes me sad. Though our stories share some parallels, I cant imagine the shit you are going through. I hope this Video finds you in good sprites:

el pimero dia/the last 24 hours

it's about quarter to five a.m., Tuesday, Aug. 14. Writing is a little clumsy as my right hand is all wrapped up to protect the shunt plugged into the top of my hand.
the first day wasn't too bad. of course, since it was my first time, despite all that I'd been told, read and seen, i still had some whack assumptions of what i was walking into. like the fact that in the back of my mind i kept picturing that scene from Star Wars: the empire strikes back, where Han Solo is strapped to this gurney and forced up against some sort of collection of spark plugs, live wires and what not as a torture device to give up information on the rebel alliance. i don't know why i though that. the room where they administered the chemo was absolutely nothing like that: it was all hard wood floors, beige paint on the walls, two windows that allowed in plenty of sunshine, friendly nurses and three older Lady's all at different stages of treatment who were pleased to have a young man in the room.
so here's how the day went:
2 a.m. - due to technical problems sending out e-mails with photo attachments, I was up late and didn't get to sleep until 2.
8:45 a.m. - woke up and made what might be my last trip to the gym to swim for about 45 minutes.
10 a.m. - returned from pool and got ready for the day.
10:30 a.m. - Mom, Dad and my Uncle Johnny from Abq., New Mexico came over. We finished making that herbal tea, Flor Essence. the night before I burned my hands preparing it poorly by myself around 10 p.m. typical me. I'm the son of my father.
noon -- checked in to the cancer clinic on Allen and Campbell in the Tucson foothills. The clinic is where I see my oncologist. It's also only a few minutes away from the Star's river road bureau.
1 p.m. -- blood labs. they took three vials of the red stuff. after I came out and waited with family in the lobby, we meet Roxie, the cancer ward dog that wanders around the clinic with a trainer and acts cute and friendly with patients.
1: 45 p.m. -- we make our way up to the second floor to register at the infusion pod, where i'll receive my chemotherapy. We had been waiting for so long because there weren't any available chairs for me.
i have to note something. as we came through the corridors and into the waiting room for the central infusion pod, i saw a kid about my age with a shunt on his back. he was pale and his head was shaved,like mine, though there were some ratty patches on the back. the sight of him kind of took me off guard. i don't know why. we didn't get a chance to talk as he was called away fairly quickly, but maybe it was the shock of another young person there. i don't know, but it tripped me out.
2 p.m. -- after getting dozen or so pages into Dos Passos' "The big Money," they called me back to my infusion pod. like i said, there were four older ladies all excited by my presence. they were all at different stages of treatment. One was a real estate agent that had lived in Chile and Argentina and was receiving an infusion for her arthritis. Another woman was receiving treatment for stage four lung cancer. her daughter had flown in from south Carolina. they gave me a heads up about what to expect and how to react. apparently she'd had allergic reactions to nearly everything they gave her. lastly, there was a woman in there receiving her final chemo. treatment. when she left, the nurses gathered a couple doctors and nurses, blew bubbles at her as she got out of the chair and cheered for her. i congratulated her.
2:45 p.m. -- after going over all the pre-chemo. drugs, effects and side effects, and the same for the chemo., they plugged me up. and of course i did what all healthy, young macho men apparently do when they get poked with needles: i turned green and almost passed out. my nurse didn't let me live that one down.
the drugs made me really sleepy, so i don't remember much from here on out. i was seated on a recliner with two warm blankets. mom sat beside me for most of it. i pulled out my ipod and started listening to son de madera. at some point i fell asleep.
5:25 p.m. -- woke up to mono blanco's recording of la bamba. i was the last patient in the pod and i guess one of four left in the ward. i resumed reading as there was no one to talk to. one thing that was weird: my right arm was really cold. that was because the iv was cold. my left arm was warm but my right one felt like an ice cube. i was also a bit dopy. for example, this young nurse bounced into the room (and i do mean bounced -- she kinda' hopped in the door all excited and peeked her head past the frame to speak to me)and told me she was 2/21/80 and i was 2/21/79. i looked at her confused. she explained we were exactly one year apart, then she said it probably didn't make sense to me 'cause of the drugs. she was right.
6:30 -- concluded day one. i was the last patient in the ward. as we left the building, it felt nice getting out of the frigid air conditioning and into the desert warmth. to the south, dark storm clouds were moving in.
8 p.m. -- dinner of rice, chicken, steamed bok choy and pico de gallo salsa i made the night before. then i climbed into bed.
10:30 p.m. -- got out of bed to watch the south park chef aid episode. i only wanted to watch because joe strummer was in it for a whole five seconds. back to bed.
no dreams. but i'm looking forward to having my own bubble party when i leave the cancer clinic for the last time.

Tucson Hospitality Inn

Monday, August 13, 2007

When I announced I'd be having chemotherapy and my folks would be coming out for the duration of the treatment, my good friend and of the best damn reporters at the star, Carol Anne Alaimo, made reservations for my folks at the Tucson Hospitality Inn.
This place is great and I'm forever grateful to her for this.
Started in 2003, it's a full acre, walled in villa, off of Edison between country club and Tucson in midtown Tucson. The place was created for patients and families of patients getting treatment in Tucson. It's basically a fully furnished house with four guest rooms (my parents and uncle johnny each have their own). There's soundproof "media room" complete with TV, cable, and theater seats, a fully stocked pantry, a full stocked kitchen, small pool and a 3,000 square foot patio with two barbecues. They're paying $35 a night.
The guy that lives on site, his name is Lou and he's got a faded swallow tattoo on his right forearm. nice guy with an old east coast accent.
He was telling us the inn is barely getting by, but the work is important and necessary.
so...if anyone is feeling charitable, send 'em some $$$ when you can.

A mohawk?...Nah, I'm going S.H.A.R.P.*

*(Skin Head Against Racial Prejudice)

a monk or a penis?

Saturday, August 11, 2007

I went down to Curley's and got my head shaved by Thomas today.
I can't decide if I look more like a monk or a penis.
Of course walking by mirrors was strange. When I put my straw fedora on, it was loose. But it really hit me when I went for a swim down the street at the YMCA.
I didn't bring my swim cap out to the deck. I kept feeling like I was forgetting something. And once I started swimming, like Mr. Chris Fan said, i actually felt faster.
I'll post pictures as soon as Nate OG sends them (Yes, his real name is Nate OG -- it's not one of my nicknames).

Me and Tony Snow

Friday, August 10, 2007

I just saw a piece on MSNBC about White House spokesman Tony Snow. Apparently his cancer has returned. I interviewed him once in Monterey.
Two years ago, Snow was diagnosed with colon cancer. His colon was removed and underwent two years of chemotherapy. According to the news reports I've seen and read, Snow was nearing two years of remission when the cancer reappeared.
The MSNBC report, part of Keith Oberman's show, depicted Snow's chemo treatment. During the chemo, he had lost weight, his hair had lost color and was thinning, but he used to leave work early on Fridays for treatment. They showed a shot of him sitting in a recliner, plugged into an iv, looking at the screen of a blackberry and typing a message. The man continued to work through chemo. And not just work, but work as a press secretary when the white house press corps started to ask real questions again. Damn. that's strength.
I remember when I met him. It was a 15-minute press conference before he and Dick Gephart (I met him too -- weird looking dude) lectured before a college audience as part of Leon Pannetta's Institute for public policy at CSUMB. I only took the assignment because I figured it put me in line to cover Hilliary Clinton's visit to the Panetta Institute. If you're wondering, no it didn't.
there were mostly local reporters -- KSBW, KCBA, KION, the Salinas California, the Monterey Herald -- assigned to the press conference. Maybe there was an AP reporter or someone from the San Jose Merc -- I don't remember.
Each reporter basically had the time to ask one question. So I tried to roll everything into one question. I don't remember what it was but it vaguely had something to do with meaningful debate despite rancorous partisanship in D.C.. Panetta, Gephart and Snow all laughed and said something equally inconsequential.
But I remember at some point Snow addressed the reporters as if he was one of us.
"Come on guys, we know we've got to work with the facts," he said. or something like that.
I silently stewed in anger: how could this talking head from the Fox network, practically an apologist for the bush administration, call himself a journalist? Outside of his t.v. work, his time at newspapers was writing right-wing editorials.
I think hours later I came up with some brilliant, cutting rebuttal in my head.
I forgot what that was too.
But I still think the same about him. After all, he is literally the white house's spokesman. And if I met him again, i'd tell him so. at least i'd like to think so.
but I'd also give him props for fighting his cancer like an aggressive reporter goes after a story.

I'll get rid of my hair before my cancer does

Thursday, August 9, 2007

I called my barber this afternoon; Thomas at Curly's in downtown Tucson, across from the Ronstadt transit center.
i could hear the the usual commotion in the background: mens voices, a sports reporter from the television reading off scores and recalling plays and the faint rumbling of bus engines and traffic.
Maybe it was my voice or the way i pronounced his name, but he recognized me right away. he asked how I was doing.
"Remember how I said I might be calling about shaving my head," I started.
Oh no, he responded.
"Well, it's time to make that call."
I told him I'd be starting chemo Monday. He said it ain't easy but assured me as a young man, I'd be able to handle it.
I said thanks and said we'd talk about it Saturday morning when I come in. He agreed.
I may not lose my hair in chemo. I might.
but I'm not going to let cancer take my hair away. I'm going to take control of that and not give anything over to my cancer freely.
The Friday before my surgery, I ran into Thomas at the YMCA. He was also having surgery the following week. We talked about our respective operations in the lobby of the gym and wished each other well. not long after I dropped in for a fade and we caught up. it took him about a week to get back on his feet from his surgery,he said, but he was back swimming again. I told him then that things were up in the air for me and I might be back for a different hair cut. that was June.

Another Benefit in Tucson, AZ

This woman is amazing. Actually, all these women are amazing.
Rosa Abarca for keeping up the fight despite all the treatments and surgeries.
Her daughter Josefina for organizing a benefit for her mother.
And of course Carmen Duarte, one of the legendary reporters around the star.
Check it out:

Welcome to My World !

Wednesday, August 8, 2007

There is so much that I have learned since the first time I heard the words, "You have Cancer." It seemed as if I was being given a present instead of a diagnosis. The doctor was casual about the procedure and the treatment. I stood in his office hallway. Hallway, you may gasp! Yes, that is where I got the news in 1991. As I was struggling for my breath and about to pass out...I suggested that we go into his office. He threw at me words and surgical terms I had never heard of. My brain shut down as he said that the surgery would require the removal of my right breast. I objected to that, and what woman or man wouldn't and asked if there was another alternative. Finally, I realized that I should read Susan Loves's book about breasts and also make some appointments with other doctors for second opinions. I set up seven second opinions...I wanted to make sure that I left no door unopened. But it only took a visit to Memorial Sloan Kettering and to a wonderful doctor who actually thought that I should sit in an office and talk about this cancer thing. So there we sat and he explained what I had...he suggested that I write notes and then he asked me the most wonderful question, "Is there anything that I can do for you to help you through this?" It was then I knew that having cancer was going to be a journey of some kind, an opportunity to learn about myself and other people and to make decisions and choices that would be the best ones for me. Since that day I have had cancer four more times and I have been on a spiritual journey, learning about life, people and myself. I have felt alone sometimes. Only someone who has had cancer can truly understand how it effects us. I hope that my sharing now and in the future will help you as well as me. God bless us all............Amf

Dr. Einhorn

Tuesday, August 7, 2007

A few days after my oncologist recommended chemotherapy, I called him back with a bunch of questions: what health precautions should I take during the treatment, what sort of diet should I be on, should I sperm bank, etc.
I also asked him about the chemo. regimen I'll be on: Etoposide, or VP-16, cisPlatin, Bleomycin, and Neulasta if needed. Specifically I asked him why these drugs and dosages? He said the treatment comes from Dr. Einhorn, one of the leading authorities on testicular cancer and treatment in the United States.
So I looked the dude up.
Lawrence Einhorn teaches at Indiana University. In 1974, he developed a chemotherapy regimen that literally turned the mortality rate of this disease upside down.
In the early 1970s, testicular cancer patients had a 90 percent mortality rate. mortality rate = chance of dying. Today, the survival rate is 95 percent.
All of this happened within my life time (well, add about five years).
Thanks Dr. Einhorn.
And for the record, Dr. Einhorn was part of the medical team that treated Lance Armstrong.

a little cancer everywhere

Sunday, August 5, 2007

ever since i was diagnosed with cancer, I've had the incredible luck of meeting cancer survivors in all walks of my life. from old friendships to sources within the beat I cover for the Star to friends of friends. and of course everyone has a story to share -- of their tio, tata, grandpa, friend or just something they gleaned from an article about Lance Armstrong. people don't have to search far to find some personal connection to this disease.
so I've been reading this book "Cancer: the evolutionary legacy" by Mel Greaves to understand what is happening to me and millions of others.
I guess one of the most interesting things I've since discovered in my reading is summed up in this quote: "the issue isn't just why do we get cancer but why not."
It's Greaves's opinion that cancer is best understood and explained within a Darwinian, or evolutionary, framework.
To put it simply, the mechanics within our body that have prompted changes from our primate origins is a double edged sword. on the one hand, our body, in a sense, mutates in response to our environment and needs, like recovering from illness. but that which allows our body to mutate, or adapt, to our environment can also go unchecked, prompting cancerous cells to grow and multiply.
"mutations happen all the time and are blind to consequences," Greaves writes. "This is the base upon which natural selection and evolution operates in nature. The second advantageous but inherent dangerous legacy is a physiological requirement,especially in more complex multi cellular creatures including ourselves, for cellular functions that endow resilience but are pregnant with malignant potential..."
the ability of our cells to change and adapt, to move quickly where they are needed (like healing, or a scab forming...)can also go awry.

Needles and Ink

Wednesday, August 1, 2007

I hate needles. I have two tattoos. Nurses always point out my tattoos after i tell them i hate needles.
hating needles is a common statement from patients. nobody likes cold steel poking into their body and blood extracted. when I had surgery in May, I remember lying on my hospital bed before the operation and freaking out. not over the fact I was about to lose a testicle but that I was going to have multiple needles in my body for an extended period of time.
like I was saying, the nurses ask how can I hate needles but have tattoos, especially the big posada piece that nearly covers my right bicep. it's different, I tell them. of course, all the small talk about tattoos is just to distract me, the nervous patient, from the needle in my arm and the blood that they're taking. a tattoo needle doesn't go as deep as a doctor's needle. and a tattoo only begins to hurt after the skin is really bruised, like when tattoo artists shade in for effect. or when it's over bone. besides, I find the sensation of being tattooed slightly erotic. but that's another discussion.
I spoke with Adrian last night. he told me I'm going to get poked alot over the course of chemo. he said he got needles three times a day and it made him feel like a junkie.
I got used to the sensation during my weekly blood tests. but a few of the nurses said people actually get more sensitive to the pin prick as the frequency increases.
we'll see.
before any of this happened, I planned to get a new tattoo over the summer. the insignia of los golondrinas, ancient family property that's now a museum outside Santa Fe. guess I'll have to wait until after all the doctor needles are done pricking me.