in addition to the PSC, josh has cholangiocarcinoma, also known as bile duct cancer or CCA. we don’t know what stage, what kind of treatment to expect, or anything really. we were just told he definitely has it. the hepatologist here in charlotte referred him to the mayo clinic in jacksonville, florida, so he has an appointment on july 14. we’re driving down on the 13th and i booked the hotel room for a week since we don’t know how long we’ll be there. my mom and josh’s parents are also going. that will be interesting since his mother has a broken leg and is on crutches. we’re taking winston with us too.

the good news is that josh’s spirits are good, he’s not depressed, and he’s determined to fight.

he seems to be getting a tiny bit better each day. yesterday he drove himself to the license tag office to turn in the CRX tag. this morning he drove himself to the orthodontist for a checkup (he’s had invisalign for about a year). of course both of those trips wiped him out, and he had no energy left by the time he got home. he’s lost about 20 pounds total but he is finally starting to eat normal amounts again, so hopefully the weight loss will stop. we still need to go to CMC to pick up the images from the two ERCPs so we can take those with us to mayo. josh will probably want to drive himself to CMC. he wants to push himself to do as much as he possibly can. i don’t blame him but i do worry about him driving when he’s so fatigued.

we’ve told our families and friends, who have all been incredibly supportive. we’ve also found some really excellent online support groups at psc-support and cholangiocarcinoma.org.

obviously we’re anxious about what we’ll find out next week, but we’re also hopeful. all we ask is that you pray. that’s all anyone can do at this point.

i’ll post more next week.

this past wednesday, we got a call from dr. russo, the carolinas medical center liver specialist, who said that josh’s liver is most definitely damaged. to what extent, no one knows because he hasn’t had a biopsy yet. i’m not sure why the doctors haven’t ordered one. dr. russo also said the brushings from josh’s latest ERCP were sent to mayo clinic for a second opinion. the pathologists at CMC felt that they were abnormal and so they sent them to mayo because mayo is where the PSC experts are. abnormal cells could mean one of three things: inflammation from the ERCP, pre-cancerous cells, or cancer. this type of cancer, cholangiocarcinoma or CCA, is rare (2 people out of 100,000), but it is not as rare among PSC patients, who have a 10 to 15% lifetime risk of developing the cancer.

dr. deal, the gastroenterologist, did a lot of work during both ERCPs, dilating as much as he could of the common bile duct. so it’s not unreasonable to assume that everything is inflamed from the trauma of the procedure. but josh is still jaundiced, itching, not hungry, and extremely tired. at this point, over a week after the ERCP, some of those symptoms should be easing up if the duct is staying open.

tomorrow is josh’s 35th birthday. hearing the big “C” from dr. russo is terrifying. 35 and cancer? it shouldn’t even be possible. so i’m praying with everything in me that it’s just inflammation. CCA statistics from cholangiocarcinoma.org:

The five-year relative survival rate (the percentage of patients who survive at least five years after the cancer is detected, excluding those who die from other diseases) for people diagnosed with early-stage cholangiocarcinoma is about 30%. However, only about 20% of cholangiocarcinoma is found at an early stage. The five-year relative survival rate decreases if cancer has spread at the time of diagnosis.

the PSC alone is bad enough. at some point josh will have to undergo a liver transplant. it’s major surgery that has continuing lifetime risks. and some people with PSC who undergo transplants actually have their PSC come back.

transplant statistics from mayo clinic:

Your chances of a successful liver transplant and long-term survival depend on your particular situation. In general, about 72 percent of people who undergo liver transplant live for at least five years. That means that for every 100 people who receive a liver transplant for any reason, about 72 will live for five years and 28 will die within five years.

People who receive a liver from a living donor have higher survival rates because having a living donor usually means a shorter wait for a liver. For liver transplants using living donors, the five-year survival rate is about 78 percent. That means that for every 100 people who receive a liver transplant using a living donor, 78 will live for five years and 22 will die within five years.

please keep josh in your prayers.

josh still feels awful. he’s actually taking a sick day today—one of the few times i’ve ever seen him do that. even when he’s sick he normally works from home, but not today.

we didn’t get out of the hospital after the last ERCP until 4 am, so we didn’t get home until almost 5 am. they had to keep him longer because he threw up right before he was going to be discharged, so they ran tests to make sure he didn’t have pancreatitis (5 to 10% of people develop pancreatitis after an ERCP). it ended up just being the anesthesia that made him sick, thank goodness. bad news is that he has to have anesthesia for every ERCP since he didn’t tolerate sedation for the first one, so we’ll most likely work it out so he stays overnight for future ERCPs. we couldn’t this time because we had no one lined up to check on winston.

but anyway, talk about a miserable night. he slept a little in the hospital but you know how they are—coming in to check your vitals right as you manage to fall asleep. i got no sleep at all and took a sick day the day after that. josh worked from home that next day.

josh’s mother broke her leg in several places this past friday night, so he spent most of saturday in the hospital waiting room while she underwent surgery to put a pin in. his dad and some of his brothers and sisters (he has 7 siblings) were there as well. apparently the siblings noticed how sick josh looks now. his mother called last night to check on josh and she said they asked if he was sick. he was hoping to keep things hidden from his siblings until he absolutely had to. but more people are starting to notice; even his boss told him yesterday he looked like he was sick and needed to get some rest. there has been no change in how he feels, but the doctor told him it could take a week or slightly longer for him to start feeling better. he’s still noticeably jaundiced, itching like crazy, and has absolutely no energy. i can’t get him to eat very much; he feels sick after he eats because his liver is producing bile that can’t flow very well through the strictured biliary tree.

my dad mowed the grass for us last weekend. he said he’d mow it again this weekend. sad to say that i haven’t mowed since i was about 14 or 15 years old, but i will be re-learning this weekend. we have a riding mower but the fenced-in portion of the yard has to be pushed-mowed because of the pool. i’m not sure i can handle the weed-eating so dad will probably still do that. there’s a bunch of stuff around the house i need to take care of, stuff that josh normally does, like changing the furnace filters and replacing burned-out landscape lights. i need to make a list.

we’re getting a break from the heat for the next week or so. highs will only be in the mid-80s instead of the mid-90s. i think we hit 90 or above for the last 3 weeks straight. the pool water is 93 degrees, which is not all that comfortable to swim in. hopefully the water will cool down some now that it’s supposed to be around 60 degrees at night.

that’s it for now. i’ll update again in a few days.

We’ve been at the hospital since 1:30 this afternoon. Josh had another ERCP. This time the doctor was able to work on both the left and the right sides of the liver. The work he did on June 15 didn’t take; the duct was almost completely closed up again. This time they put Josh to sleep (instead of just sedation) and the doc was able to dilate both sides to 6 mm. So hopefully this will stick and Josh won’t have to have another ERCP for 6 weeks. If his labs keep going up, he’ll have to have another one sooner.

He’s still very jaundiced, itching (a symptom of PSC), losing weight, and nauseated. Hopefully today’s procedure will help him feel better.

The doctor said there is no chance that Josh will live out the rest of his life with his original liver.

It’s 1:34 am and I can’t sleep. Josh has been in bed since 8 pm or so. He’s felt pretty bad since his ERCP this past Tuesday: jaundice, fatigue, nausea, no appetite. He’s been sleeping a lot, but he went to work yesterday and today.

The Urso makes him a little nauseated. He’s only been taking it two weeks, so it’s too soon to say if it’s helping. He’s also on an antibiotic (standard procedure after an ERCP). Blood work yesterday indicated his liver enzymes are back up again. Of course the doc didn’t give exact numbers, but we’ll get them at the next appointment on Monday.

The news doesn’t look good. Doc said ERCP indicated “severe PSC.” We thought we were looking at the beginnings of the disease, but it appears to be more advanced than all the doctors thought. I don’t really know what Josh thinks; he doesn’t say too much but it’s obvious he doesn’t feel well. I think he’s still shocked at the diagnosis. I struggle with feeling overwhelmed sometimes when I think about how our lives are going to change. Mostly I feel helpless because there’s nothing I can do to make Josh feel any better.

The idea that the diseased liver is slowly turning to stone inside his body is unfathomable. And I don’t think I’ve ever heard a scarier word than “transplant.” We will quite literally have to re-learn how to live our lives. And I say “we” because I’m in this with him, through whatever it takes. He’s going to be by my side at least until we’re 100. First thing I need to work on: being much, much pushier with the doctors. No more meek, head-nodding, quiet little sheep.

life has been pretty uneventful lately, so i haven’t had anything to say. still don’t have anything to say, but i figured i’d toss a note up here just in case anyone is wondering if i’m still alive.

holidays were good, had a great two-week vacation during which we saw a bunch of relatives on both sides of the family, tigger is doing okay, winston’s doing great (although we discovered he’s kind of scared of puppies), josh caught a cold after christmas (i’m pretty sure he had a cold during christmas ’08 vacation, too) but so far he hasn’t given it to me, i slept late everyday during vacation and stayed up way too late overloading on house hunters and internet shopping. we spent time with my family, josh’s grandmother, and most of josh’s brothers and sisters, but we never saw or talked to his parents (no surprise there).

assuming we can find a pet sitter to stay with tigger and winston, we’ll be going to las vegas in march. we haven’t had a vacation in almost three years so i really hope we can find a pet sitter we trust. i love my boys but i need a vacation!

i’m getting lasik on january 15, right eye only. my left eye is 20/15, so no need to work on that one. the doctor said he can get me to 20/25 in my right eye after the lasik.

school starts back in february. i dropped my november class so i’ve been totally lazy since then. i’m kind of dreading starting up again. i want to get my master’s, but it’s so much more work than i ever anticipated. plus, i’m lazy, so there’s that.

back to work tomorrow. i haven’t checked my work email at all in two weeks. hopefully it isn’t too bad since a lot of people were off. going to try to be in bed by 2am tonight. we’ll see…

Ledbetter was, as noted by The Lead Belly Foundation, “a musical giant [and] a legend…remembered as the ‘King of the 12-String Guitar.’” Leadbelly is very much a biography told through verse. Jess explores each phase of Ledbetter’s life by using all manner of poetry, including prose, letters, dialogue, lyricism, and persona. By inhabiting the voices of various characters, Jess is able to bring Ledbetter’s fascinating existence to life, while examining cultural issues such as racism, stereotypes, and classism. Ultimately, Leadbelly leaves the reader with a clear sense of certain moments of Ledbetter’s self and environment, even while it paradoxically leaves the reader wanting to learn more about this influential musician.

The first poem in Leadbelly conveys how Ledbetter got started with guitar lessons as a 12-year-old:

“i’d tote up from the swollen center of guitar,
its catch and slide caught between palms
and cradled ‘cross louisiana starlight” (Jess 9).

When we look at this poem, titled “leadbelly’s lessons,” we can see a variety of poetic devices in use that serve to establish the tone and voice of the rest of the book. In just the three lines above, we can see alliteration is present in “swollen center”; assonance in “caught…palms”; consonance in “louisiana starlight.” This poem explains how Ledbetter began to learn to play guitar: in a general store, the owner ordered Ledbetter to “hoist song” the way the owner “hoist[s] bourbon” (Jess 9). Jess also uses the metaphor of undressing a woman to explain the act of making music with the guitar: “undressing music from its wooden clothes” (Jess 9). Right off the bat, music is established as the central theme of the book. By using the theme of music, Jess is able to bring out other themes, including racism. One of the other things the general store owner taught Ledbetter is “the ways/of pure white envy” (Jess 10). In that general store, Ledbetter is first introduced to the wide gap between white and black. He’s taught to envy from the very young age of 12, setting the tone for the rest of his life. Jess is successful in using this introductory poem as an explanation for what he wants the rest of the book to accomplish. The book’s overarching themes are all established in this short piece.

After that introductory poem, Jess begins the first section of the book at the beginning of Ledbetter’s life, with poems written in the voices of Ledbetter’s parents, Wes and Sally. Each section of the book features poems that follow Ledbetter’s lifeline, from birth to death. Jess’s poems take the reader on a journey of low and high points throughout Ledbetter’s life, while also leading the reader on a discourse about the issues of race, society, and class, many times all in the same poem, as seen in “Ethnographer John Lomax Speaks of His Vocation”:

“I stake my claim on the breath of each Black
willing to open his mouth and spit out
southern legend’s soiled roots. I will blue
the pale ears of Ivy League lecture halls

with secrets snatched from between Negro jaws.” (Jess 66).

Some of Jess’s poems may seem hard to grasp without careful study, and even then they may elude even the most academic reader. Stephen Burt observes that “the poets of the New Thing eschew sarcasm and tread lightly with ironies, and when they seem hard to pin down, it is because they leave space for interpretations to fit.” Not all of Jess’s work fits into the New Thing paradigm, but his use of experimental forms and obtuse imagery certainly does seem to fit the highbrow requirements. For example, in the poem “the song speaks,” Jess describes several images that may leave the reader scratching his or her head (even though they are, without a doubt, beautifully worded):

“sticky with god,
i shove and smooth
my way up gullet,
hauling treasure
chest of fingerpop
and footstomp.” (Jess 79).

One other important point to make in this review is the musical quality evident throughout Leadbelly. Jess’s subject was a very influential musician, noted on Leadbelly.org as the “King of the 12-string,” so it is no accident that Jess’s poems contain a strong musical quality. Jess’s background as a performance poet (according to Heintz, “by the early 1990s he was making a name for himself as a performance poet”) allows him to focus on the tonal quality of his poems more so than a poet without a performance background would. Sonic devices such as assonance, consonance, alliteration, and repetition abound throughout Jess’s poems (some of which are seen in earlier examples in this review). As noted on the Web site for the Smithsonian Center for Folklife and Cultural Heritage, Ledbetter’s “repertoire included diverse African-American styles from work songs, ring chants, cowboy songs, games, and Tin Pan Alley to the Delta blues”; Jess’s Leadbelly reflects this diversity.

This musical quality is different from the style of other contemporary poets such as Denise Duhamel. While Duhamel also uses persona poems to get into the character of Barbie in her book Kinky, she uses third person and a dry, droll tone of voice: “Born in 1980, she looks exactly like Black or White Barbie/…Shoppers/who complain she’s hard to find should check Lamston’s/or Woolworth’s” (Duhamel 21). Her book doesn’t follow the timeline of Barbie’s life and the poems don’t tell an overarching story the way Jess’s poems do. The poems are interconnected in that they offer commentary on the plasticization of society, but unlike Jess’s work, they do not offer the reader any additional information about their subject. Like Jess, Duhamel uses an influential icon as her character, but she doesn’t take it nearly as far as Jess does.

Jess’s lyrical style probably better compares to the work of Patricia Smith, who Heintz states, believes “performance has an absolute relationship to text.” Smith’s writing is passionate, energetic, and has a lyrical quality due to her slam poetry roots. She isn’t just writing for the page, but also for the stage, much the same way Jess is. For example, these lines from “Asking for a Heart Attack,” available on slamnation.com, show the musical quality of Smith’s writing:

“Aretha. Deep butter dipt, burnt pot liquor, twisted sugar cane,
Vaselined knock knees clacking extraordinary gospel.”

Smith’s subject matters are obviously not the same as Jess’s. However, they both infuse their writing with music, rhythm, and soul that is at odds with many of today’s contemporary poets, where the prevailing style seems to be a sort of detachment. Though Jess and Smith have both written persona poems as part of their repertoires, that sense of detachment isn’t there at all; they both whole-heartedly embrace their characters as they dive into them head first.

Perhaps because Jess embraced his cast of characters so completely, Leadbelly was a joy to read and process, providing beautiful poetry in both traditional and the more experimental New Thing formats. The reader also gets a thorough history lesson about a dramatic and influential musician who left an indelible mark upon American music. Leadbelly.org observes that Ledbetter’s “music still has a great influence on some of [today’s] greatest artists, both black and white”; in much the same way, Jess’s book will probably influence future poets when undertaking their own ambitious historical/societal/musical/experimental poetry collections. The thought-provoking social commentary throughout the poems is also a wonderful quality that serves to encourage readers to learn more. Leadbelly is one poet’s careful conclusion about a tumultuous character and time in history; readers will finish the book wanting to learn more so they can draw their own careful conclusions. Readers will marvel that Jess managed to impart so much impact into the space of a book of poetry, weaving a complete life together with the power of each individual character and poem.

Works Cited

Burt, Stephen. “The New Thing.” Boston Review. May/June 2009. 18 July 2009 <http://bostonreview.net/BR34.3/burt.php>.

Duhamel, Denise. “Hispanic Barbie.” Kinky. Washington: Orchises Press, 1997. 21.

Heintz, Kurt. “The Idea of the Father.” The Book of Voices. 2000. 18 July 2009 <http://voices.e-poets.net/JessT/home.html>.

Heintz, Kurt. “Chapter 1: Patricia Smith.” The Book of Voices. 1999. 25 July 2009. <http://voices.e-poets.net/SmithP/>.

Jess, Tyehimba. Leadbelly. Amherst: Verse Press, 2005.

“Lead Belly.” The Lead Belly Foundation. 2004. 21 July 2009 <http://www.leadbelly.org/leadbelly.html>.

“Lead Belly.” Smithsonian Center for Folklife and Cultural Heritage. 2009. 21 July 2009 <http://www.folklife.si.edu/center/legacy/lead.aspx>.

Smith, Patricia. “Asking for a Heart Attack.” Slamnation. 25 July 2009. <http://www.slamnation.com/archive/HeartAttack/>.

been busy with tigger, work, school, pool…just too many things i want to do besides updating this website. but i thought i’d throw a little note on here with a few details.

the vet had to adjust tigger’s medication again after a few rough weeks and a bunch of checkups, but he’s doing okay now.

work is insane right now. so busy i can’t think straight (then again, that’s not necessarily a new thing). i have to go to san francisco june 15 through june 19. i don’t want to travel so i’m not looking forward to it.

school started up again and i’m in the advanced poetry workshop. it’s going to kick my ass.

the pool is awesome. love love love having a pool in the backyard. i hope it’s 100 degrees everyday this summer.