Jazz’s Neighborhood

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Here's our front door on Halloween...

...and a close-up of the Jack Pumpkinhead jack-'o'-lantern I carved (pattern from Pumpkin Masters - but really, aren't they just ripping off "Nightmare Before Christmas?")

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And some not-so-tasty Halloween cookies. Apparently, whole-wheat gingerbread mix was not the way to go. At least they're appropriately dark for Halloween.

For those of you who are busy, the good new first, so that you can skip the 3-minute filmstrip about the Lenape Indians that follows ☺

CANCER UPDATE:
Finally, finally, on the fifth try, the CSF (cerebral-spinal fluid) is looking clear!
This doesn’t necessarily mean that the CSF is free of cancer cells, as they can only test it by taking small samples, but it is certainly a step in the right direction, as the previous four samples showed unidentifiable “degraded cells” floating around. The doc seems to be taking it as a good sign and has pushed my next intrathecal chemo infusion to 8 weeks out (i.e., early December).
    I had a PET/CT of my lungs, and it showed a slight reduction in the solid tumor in my right lung - more good news.

    So despite the all-over Tarceva rash that is making me look like a pink-and-white spotted leopard and the increasing pleural effusion (fluid in the lung sac) in my right lung that they may decide to drain after an x-ray this Friday, I’m in a pretty sunny mood this grey autumn day.
    I hope that wherever you are, you’re staying warm and dry, and maybe looking forward to a fun Halloween full of treats and scary costumes!

End of update!

Love,

Naomi

THE LENAPE THING:
On Friday afternoon, after getting another needle in the back during Thursday morning’s intrathecal chemo infusion (Infusion No. 5, thank you very much) and before a spinal MRI to see if the arachnoiditis is making my lumbar nerve roots stick to each other “like wet cotton candy,” my mom and I managed to take a few minutes to see the exhibit about the Lenape tribe of Pennsylvania at the Penn Museum, which is luckily just across the street from the main hospital.

For those of you that don’t know, the Lenape Indians are especially significant to us in New Jersey because, as the exhibit explains, although they were not officially recognized (by the U.S. government, of course) as native to Delaware or New Jersey, they did in fact live in these states as well as in Pennsylvania.
They are also especially significant to us in Mays Landing because a tribe of Lenape were said to have lived here. The summer my family moved to Mays Landing in 1979, Cornell’s graduate archeology program was digging several sites not half a mile from our house, on the other side of the street on the banks of the Greater Egg Harbor River, which runs in front of our house. I spent time looking for “Indian trails” and arrowheads in the woods, digging up white clay on the riverbank, and occasionally finding bits of clamshell that I thought might be wampum.
After Cornell finished their dig, leaving a few stakes with pieces of twine still attached to mark where they had been digging, the developers moved in, plowed over the dig sites and built two large subdivisions. Now even the riverbank is plastered with “No Trespassing” signs at the edge of almost every owner’s property, so that one can’t even take a walk along the river at low tide any more.

The Penn exhibit was small, but it was nice to see some of their beautiful artifacts, hear the Legend of the Four Crows, and know that the Lenape are still very much here.

The Penn Museum website provides a very nice explanation of the Lenape exhibit, with lots of information and beautiful pictures (it was just too dim for me to get good video of the artifacts, so I mostly didn’t try.)
http://www.penn.museum/sites/fap/index.shtml

[Scroll all the way down to the bottom to see the video]

Text of signs shown in video that are not readable:

1. “We’re Not Telling You Everything” [0:05:12~0:12:19]
“Many of the objects and stories presented here have not previously been shared outside the Lenape Nation of Pennsylvania. For centuries, Lenape have carefully passed down the knowledge contained in this exhibit, often at great personal cost.
“Yet the information presented here does not constitute the whole of their knowledge. Some things remain sacred and cannot be shared publicly or with people outside the Lenape Nation.
“As responsible and respectful students of their culture, it is our obligation to respect this secrecy. The Lenape, like all other people, are entitled to their secrets and are the rightful possessors of their sacred knowledge.”

2. “Pampil (bambeel) – Pennsylvania Gazette, Reproduction of the July 12, 1764 edition.” [1:19:17~1:38:16]
    “This advertisement by Penn’s* sons promoted the indiscriminate murder of Lenape people in Pennsylvania. It offers payment to civilians who capture Delaware (Lenape) individuals, or who kill them and turn in their scalps as evidence. The payment for a male over ten years of age was $134, for a female, $50.
“Source: Rare Book and Manuscript Library, University of Pennsylvania”
*(Notes for non-Americans: “Penn” refers to William Penn, the founder of the state of Pennsylvania as the U.S. government defined it. His statue still adorns the top of City Hall in Philadelphia today. According to this exhibit, William Penn himself dealt much more fairly with the Lenape people, and the incidents featured occurred after his death.)

3. “The Walking Purchase” [2:15:06~2:27:00]
    “The most prominent example of the duplicity of William Penn’s sons is the Walking Purchase of 1787. Assisted by their father’s secretary, James Logan, Penn’s sons used a forged document to argue that the Lenape had agreed to cede a parcel of land that would extend from present day Wrightstown, PA “as far west as a man could walk in a day and a half.” Led by Chief Lappawinsoe, the Lenape agreed to honor the treaty in order to maintain the uneasy peace between Pennsylvania and themselves.
    “James Logan orchestrated the clearing of a path in advance of the “walk” intended to measure the land in question, and then hired the three fastest runners in the country to run as far as they could in the allotted time. As a result, the Lenape lost over 1300 square miles of their territory – about twice what they had expected to lose through a day and a half walk.
“To guard against violent reprisals from the Lenape, Logan built an alliance with the more powerful Iroquois tribe that required the Iroquois to forcibly remove the Lenape from the Walking Purchase Lands.”

http://www.garbagewarrior.com/gallery.html

The movie got tedious after a while, but the concepts and techniques in the beginning were truly fascinating.

Latter half of the movie gets into how Planning kills ideas and communities, yay!

You can get quite a lot of info on Reynold's saga just from looking around the website w/out buying the DVD.

And thank you, Hai-Ling, for sending it to me last year!

As I put the finishing touches on my own "Lucy the Elephant" video, here's a (somewhat tedious) explanation of Lucy and her 128th birthday:

A friend of mine died today of lung cancer.  He was diagnosed a few years ago & decided not to treat it.  I wasn't aware he was fighting, he just seemed to be partying like no tomorrow to me.  He knew something I didn't.  I am not sure if I admire his take or not?  I can see how one would want to do that after the horrors modern medicine has to offer.  But why did he do it?  Doesn't he value his life?  It seems to me to do nothing is the easiest, that's what he did.   I remember him with a constant cloud of smoke around his head and a joke on his tongue.  He went into the hospital 2 days ago & in now gone.  In honor of him I will do as little as possible tomorrow.  He lived & died by his choices, I hope he has found peace. 

    Finally, some good news!

    The latest CT scan showed a reduction in the size of the largest tumor in the right lung, as well as a little reduction of the "interstitial stuff" (i.e., the cancer that looks like pneumonia instead of solid tumor). The large tumor doesn't seem to be pressing on the bone any more either.

    I guess the Tarceva is working after all!
    Does this mean I can't bitch about the $2,000.00/month price tag?

    I'm still having pain in my lungs and trouble breathing, apparently due to the pleural effusion (fluid around the lungs) in my right lung getting slightly bigger.
    The oncologist mentioned draining it if it gets any bigger - another needle in the back, urgh.
    But for now, we will "wait and see."

    And as for the intrathecal chemo, the last analysis of my spinal fluid was "unclear" (don't know if we're looking at cancer cells, dead cancer cells, or some other dead cells), but since things don't seem to be getting worse, my oncologist said he would give me six weeks' break.

    So no intrathecal chemo until the first week of September, I can stop the steroids for a while as long as the arachnoiditis doesn't come back - it's like a real summer vacation!

Just a quick update to make up for yesterday's rambling/unclear post:

1. I had a chest CT last Tuesday, and will hear whether the lung cancer is progressing tomorrow when I go to clinic.
I have been taking Tarceva for two months now, but am still having a lot of pain/difficulty breathing, so feel that we may end up discussing yet another treatment for the lung cancer.

2. I had my third intrathecal chemotherapy last Wednesday, and the oncologist's current plan seems to be to continue to do the intrathecal chemo on a regular basis even if the CFS (cerebral spinal fluid) is apparently clear of cancer cells because this is all they can do to try to keep the cells from coming back.

3. They still do not know whether the whole brain radiation stopped the brain lesions (these are tumors in the meninges of the brain, totally separate from the free-floating cancer cells in the CFS although they may be producing them).

So this is the quick update.

My cousin knitted a very chic scarf for a frog I crocheted, so he'll be the one signing off today...

Froggy

    Here I am today three days after my third intrathecal chemo dose.

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    But today I'm mostly having "run-of-the-mill" pain from the needle for the lumbar puncture and the other needles they stick in you to numb you up.
    I think because I'm not made of canvas and filled with someone else's hair and juju, I'm finding the needles-in-the-back-every-three-weeks voodoo experience a little trying.

    But in the mean time, the most painful side effect has turned out to be "arachnoiditis" after that second chemo.

    Arachnoiditis is where the chemotherapy agents damage the nerves in the spine, sometimes permanently. I was diagnosed with it after days of shooting pain in my legs and hips upon standing or sitting, but didn't realize it because the symptoms were so similar to the kind of hip flexor pain that is caused by the steroids like dexamethasone.

    Finally my mom read something on the Internet (Excedrin and Oxycodone were having no effect), and she found out that I was supposed to take dexamethasone to both prevent and treat the nerve pain, before, during and after the intrathecal chemo infusion. One day of getting back on dexamethasone (and resuming all of the more-than-a-little-inconvenient side effects therewith) and I was right as rain; no pain at all.
    For more information on arachnoiditis (trust me, you don't want to read it), a horribly scary web posting is here: Arachnoiditis


    A good, good friend, Jazz, who is in a similar situation w/regard to advanced-stage lung cancer at a young age (but w/out the brain mets or failure on Tarceva, thank god!) recently heard that her cancer may be progressing again.
    She made a good point about doing lots of fun stuff when you're young and taking lots of pictures of it - wish I had done it. (Well, I don't know about the sequined hot pants...)


    So here are some old pictures from a family trip to Guatemala in late 2003.
We went to Antigua, the Northern Highlands and Tikal, but my parents' camera was stolen and we ended up with only a few photos from Tikal from a cheap disposable camera.
  

Tikal's Cloud Canopy

    Yes, George Lucas used this shot for the "Moon of Endor" in " Return of the Jedi."
    (We didn't encounter any Ewoks, but the coatimundi were cute.)

    Climbing up Temple IV on this:

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in order to make it to the top was pretty strenuous.
    Until Louis Sullivan built cast-iron framed "skyscrapers" in the 50's, Tikal's temples were the highest buildings in the Americas, although in ruins by then.

North Acropolis at Tikal

Central Acropolis at Tikal