HOLYHEAD, Wales - A man who dressed up as Darth Vader, wearing a garbage bag for a cape, and assaulted the founders of a group calling itself the Jedi church was given a suspended sentence Tuesday.
Arwel Wynne Hughes, 27, attacked Jedi church founder Barney Jones -- aka Master Jonba Hehol -- with a metal crutch, hitting him on the head, prosecutors told Holyhead Magistrates' Court.
He also whacked Jones' 18-year-old cousin, Michael Jones -- known as Master Mormi Hehol -- bruising his thigh in the March 25 incident, prosecutors said.
The two cousins and Barney Jones' brother, Daniel, set up the Church of Jediism, Anglesey order, last year. Jedi is the faith followed by some of the central characters in the "Star Wars" films.
30 May 2008
dang.
29 May 2008
new groinstrong post
also, be sure to check out the new calendar at groinstrong - it's in the right hand sidebar and if you scroll over the various events you'll get more information.
and that is enough time on the computer today!
GROINSTRONG! (dot.com)
so take a look! i'm just getting started and it's a new online editing system, but hopefully as time goes by we will have all kinds of cool features like a paypal donations system and a groinstrong boutique and who knows what else!
GROINSTRONG!
We are Family!
28 May 2008
post number 550
i have lots to share. but i have lots to do! hopefully i'll have a chance to fill you in tonight.
No bracelet
I'm on my way to the sperm bank. This is really, really weird.
27 May 2008
groinstrong update
a long weekend
i have some work to do today. things are going okay and i have my next doctor's appointment tomorrow. i'll keep everybody posted.
24 May 2008
Thank you, Insomnia and Care Packages
I'm keeping a list of everyone who has given me a hand so far. Gifts, meals, a well timed call, all the things that are supporting me every day of this experience. And I'm starting to realize that it's going to be a challenge to keep track. So bit by bit, I want to thank you.
Your letters. The tales of survival, messages of strength and energy and boundless love. I cannot thank you enough for them. On my darker days I read them and they restore my soul. Ditto the many loving and supportive emails and text messages. It's amazing to me how much love one can capture in just 160 characters.
Tonight I thank you in particular for the choice care packages, delivered in technicolor splendor from multiple West Coast locales. I've cut my sugar intake considerably (cancer actually does love sugar) but a homemade, airmailed cookie every so often is proven to have curative powers. Right?
One package, thoughtfully gathered by a friend whose name starts with an M and ends in ichelle Sargent, included the book Fraud by David Rakoff. "I've heard it's hilarious," the touching letter explained in the author's instantly recognizable script.
There is much humor in this collection from Rakoff, a contributor to This American Life and more. It is dry and delicious and a bit insane, like pounding a bottle of good Sancerre.
The essays are preceded by Rakoff's art, which is quite good. The final frontispiece is of seven sperm in silhouette. In his 20s, Rakoff was diagnosed with Hodgkin's disease - lymphatic cancer. The essay is about his sperm bank donations before his chemo and radiation.
Turning over each new page of the story was like exploring another viscous, gray wrinkle inside my brain. All the pressure. The terror. Even the feeling that since my cancer is easily treated and commonly beaten back that I am "at best, a cancer tourist, that my survival means I dabbled. Kinda been there, sorta done that."
Still, there it was, one telling of the vast inevitable life-altering course that is before me. His words were neatly laid out in a gentle serif font, 35 lines to a page, telling with a wry comedic touch of the naming of his viable sperm found in a post-chemo test. They could only find seven. Seven. Radcliffe, Barnard, Bryn Mawr, Wellesley, Mount Holyoke, Smith and Vassar.
So thank you, Michelle, for this inadvertently initiated journey deep into my own psyche. I needed that. And will continue to need it.
It's late and I should be asleep.
One last thought crosses my mind before I turn in. Would someone mind writing the Mets and explain to them that I am suffering enough already? Their losing makes my cancer hurt.
23 May 2008
feeling better
c'mon three day weekend! get here!
22 May 2008
A long day.
Oh did I mention I accidentally threw away my insurance card? Not like I needed it or anything. They shouldn't put the card in the prescription packet like that. Don't worry, a new one is on the way.
I'm feeling broken and broke. The sperm bank is going to cost at least two grand. The hospital bill hasn't come yet. I'm starting acupuncture and physical therapy - oh hey, those cost a lot too. I have savings. I have lots of offers for help but I'm tired of asking for things.
I just want to crawl into bed and wake up in the fall of 2009, on the other side of treatment.
Sometimes a groinstrong bracelet just isn't enough.
21 May 2008
Up with the good, down with the bad.
It's a pretty good philosophy for life too.
Saw the doc this afternoon and things are looking good. Up with the good! Actually, she said things are "terrific!" She pulled my stitches from the mole incision and cleared up a ton of blockage from the lymph drain. Hopefully that will help with all of my leakage issues.
I commuted for the first time without taxis. It was exhausting. I am completely out of energy. My sides ache. My back aches. The crutches are starting to leave a rash against my ribs. It ain't much fun.
Time for a nap.
the first commute
i've got a lot of work to do this morning. light updates. hopefully my internet at home will be working because i have a some exciting news!
i have another doctor's appointment this afternoon. hopefully the stitches will come out today, but i think the drain is here to stay for a while. i am so ready for it to go!
20 May 2008
i couldn't say it better.
Ordinarily when no-nos are tossed I get grumpy and frustrated bemoaning the fact the Mets have never had one in franchise history, and guys like Clay Bucholz and Anabel Sanchez have. But Jon Lester's no hitter last night is different. I'm sure you know the story already, but it bears repeating.
In August 2006, he was scratched from a start with a sore back, at the time they thought it had to do with a car accident he was in, but the tests on his back revealed enlarged lymph nodes that were causing the back pain. Lymphoma. Cancer.
He underwent 4 rounds of chemotherapy, drove the cancer into remission, and somehow managed to report on time when pitchers and catchers reported for spring training in 2007. He started the season in AAA but returned to the majors in July, less than a year after his initial diagnosis. In October, he started and won the deciding game of the World Series. And now, last night, less than 2 years from being diagnosed with cancer and all of the doubt and anxiety that it brought, he threw a complete game no-hitter, accomplishing something that our entire beloved franchise has been unable to in 46.25 seasons.
But I'm not bitter, I'm inspired. Not only did Lester beat and come back from cancer, but he is able to physically compete at an elite level. Dominate even. He's not only back in the bigs, but he's also stronger and better than ever.
So I hope you too are inspired. Stay strong.
19 May 2008
treatment update
i haven't healed enough from the surgery to begin any treatment. i need a couple more weeks for the scars to heal and particularly for the lymph drain to stop draining so much. i have a tube draining out from above my left groin where they removed 15 lymph nodes (5 of which where cancerous). the tube drains into a bulb that i have to empty a couple times a day. i have named the bulb 'bob" - but bob with a british accent, so it kinda sounds like bulb. say bob with a british accent and you'll see what i mean. bob. bob. NO I AM NOT ON PAIN MEDICATION RIGHT NOW THANK YOU FOR ASKING.
seriously you guys, i am a leaky faucet right now. a faucet that drips an orangish translucent mixture of lymph and blood. mmmm. so i'm not ready for treatment, and we're waiting a bit. that gives me a couple weeks to stop leaking so much and to build up my strength.
and i will need that strength, because at some point in about mid-june, i'm going to start radiation. it'll be about five to six weeks of lower dosage radiation, as opposed to a shorter cycle at greater strength. they'll be aiming the radiation from around the top of my hip to the bottom of my knee, and they're concerned about potential for damage to my lower intenstine and rectum (rectum? i don't even know him! hA!). so they'll perform a longer-term but lower dosage radiation to minimize that damage.
as for interferon and the experimental melanoma vaccines (currently in phase two), i won't start any other treatments until i'm completely through the radiation cycle.
so i will have the next few weeks to heal, gather my strength and try to live my life as normally as possible. i'm going to be in the office for a couple hours tomorrow and then slowly start phasing back into working regularly. i'm just about out of sick days and i'd like to save my going on disability for when i really need it. and i'd like to save my vacation days for when i'm healthy enough to enjoy them.
i'll try to keep you all updated as things progress, but i may return to work and find myself totally overwhelmed with a backlog of projects.
thanks again to all of you for your support, love and encouragement!
Hospital watch, hour 5.
GROINSTRONG!
I'm anxiously awaiting the results from these appointments.
So as a distraction, I have some rad news. There's a chance that groinstrong bracelets will make it into the hands of both Stephen Colbert and Lance Armstrong! Awesome right?
In preparation for our groinstrong empire, I have reserved groinstrong.blogspot.com as well as purchased groinstrong.com. What their point is exactly I'm not sure. But to answer your question, GROINSTRONG.
18 May 2008
the story so far.
i thought it might be helpful for people to hear the story of all of this from the beginning. i never really got around to posting a thorough explanation. at the start, even my few regular readers might not have seen it coming. so here it is.
the mole.
a mole has been growing on my left leg for a year or so. approximately four inches above my knee and a bit to the left. small. i never thought much of it. people have moles. sometimes they start growing and then you cut them off. end of story. my lack of health insurance outweighed any minor worries. then its rate of growth increased. it began building up substance, pushing out above the skin. it would grow a bit and the skin would brush off in shower, and a layer just a little stronger would take its place. sometimes i would wake up with a little speck of blood on the sheet. i thought it could be easily removed whenever i felt it necessary. to me it was just a tiny scab, a slight annoyance. if i tired of it, i could just get some ice and my leatherman and it would be gone forever.
the lump.
in the first week of february, i found a lump. i don't remember exactly how i stumbled across it. i think it was while i was removing my boxers late one night. there it was. a slightly swollen lymph node, tucked in among the pocket of nodes left of my groin. i sat down on my bed. i sat down and i said out loud, "oh my god. my life has just changed forever." truthfully. in that first instant i knew something was very wrong. as if powering through the bitterness of february in new york wasn't enough.
a week later, i was in california for a much needed early taste of spring. i was scared. i was with my family. i didn't want to concern them. on the first of march, my health benefits would begin. i figured i could wait until a doctor took a look and then let people know. no one ever wants to hear about a mystery lump. it was still small. when i would do yoga i could my leg muscles were affected slightly, that there were limits to my extensions, and that the point of issue was the lump. that was about it.
i lived my life. i expended my energy surviving the end of winter. and the lump continued to grow. it grew fast. it pushed upwards and outwards. i came to think of it as a companion. my mystery lump/my mystery lump/wherever i go, he goes. that sort of thing.
when the growth became visible on the surface of my skin, i sat down with my friend nora. she went to vassar with me. and she graduated last week from mount sinai medical school. she's smart. and so i asked her. "what's this lump?" and she felt it and said, "well, it could just be a fatty deposit. or maybe the effects of an STI. they can probably put you on meds to unblock it. or drain it. or at worst, cut it out." i asked her if i should wait for my now one-week-away benefits or if it was important enough to get checked out. smartly (i told you she was smart) she told me to wait for my benefits. it never crossed my mind that the lump might be connected to the ever-expanding mole-mass above my knee. if i'd shown her that as well, she would have told me to head to the doctor the instant i was covered.
march one rolled in. and i slacked off. it was just a little lump. no big deal. my boss recommended her primary care physician. i called his office. "i'm sorry, since you're a new patient, it's going to be quite a while before we can see you." ok fine then. fine. i will go somewhere else, i thought. but then i didn't. and then a week went by. and another. i finally got around to calling back. the next appointment they had was in late april. i set it up. the lump grew.
and grew.
california.
mid-april. i headed west again. the lump was bigger than ever. from small grape to golf ball in two months. it assuaged my worry somewhat that the lump was never painful - the only noticeable physical effect was the slight strain i could muscles just below. i was staying with my grandparents, in town for a weekend to celebrate their 65th wedding anniversary. 65 years! and still head over heels in love with each other. inspiring, ain't it? it was an emotional weekend. my grandfather, after three heart attacks and decades of suffering through degenerative disc disease, was in constant and agonizing pain. at thanksgiving the previous year, he had offered me a ticket to come out and visit any time. he told me he would leave it in his will. i told him he shouldn't say things like that. he was ready to die. would this be my last weekend with him?
perhaps it was the stress of a tearful flight, writing a letter to my grandparents, telling them that i had learned from the lessons they had taught me. from their lives lived with joy, compassion, conviction. showing them that even as they passed on, their ideals would live through their children and their grandchildren. perhaps it was the effects of altitude and pressure changes. or maybe it was the rough and tumble make-out session the night before.
but that first night, in the silent darkness of my grandparents' guest room, i woke up short of breath. and in excruciating pain. it felt as if the lump had grown spikes, a sea urchin urging its sharp points up into every nerve, like being stabbed with tiny knives from the inside. blinded by pain, writhing in bed, i broke into a cold sweat with fear. fear that had built up inside me for months and been ignored. i stumbled into the bathroom, barely able to stand straight between the waves of pain. i found a bottle of alleve behind the mirror - but that makes me throw up, so no good. given the long-time vagaries of my lower back, i usually traveled with ibuprofen. but i'd forgotten my boy scout ways this time. i continued my search through the medicine cabinet until i found a large bottle of oxycontin. he wouldn't miss just one pill, would he? 45 minutes later i passed out blissfully, waking in fits and starts but now dulled and drugged.
the next morning, the pain subsided, leaving me with nothing more than a sore leg and a groggy head. i told my grandparents about the lump. they were terrified, of course. and my fears were growing. i explained to them that my appointment with the doctor was almost immediately after my return home, and that we would all just take a deep breath and hope for the best. i relaxed and enjoyed the family celebration through lingering aches and a deeply buried terror.
doctor, part one.
six years i'd gone without health insurance. and now i finally was covered. it was exciting. i was actually looking forward to getting a physical. it was a bit of a let-down. all that poking and prodding, generic questioning, a lack of any personal connection. i explained to the doctor about these two growths on my leg, the mole above the knee and the lymph lump. when he pulled my boxers aside to examine the lump, he remarked concernedly, "oh yes, that's a big guy." he looked at the mole and pointed out the bleeding of its brown margins into the surrounding skin as a sign of potential melanoma. "i'm going to send you to a dermatologist," he said. "right now. you have an appointment in twenty minutes."
they don't usually do that, do they? send you immediately to the specialist i mean. threat level was now at orange.
doctor, part two.
an hour later i cringed as the numb burn of lidocaine spread underneath the mole. i HATE local anesthetic. the dermatologist deftly excised that hairy, scabbed over piece of me, leaving a bleeding, subcutaneous perfect circle of flesh. "i'll rush this is for biopsy," dr srivastava said. the hiss of gas. the smell of burning flesh. cauterizing is awesome. "i'll get you in touch with an oncologist at NYU to do a lymph node biopsy."
wait excuse me what?
last minute appointments? rush testing? multiple biopsies? the word oncologist? what in the hell was happening? and i want to know/is this really happening to me?/i can feel/the winds of change blow through me. that's from a song i wrote. i played it that night and felt strange. and scared, ever more scared.
doctor, part three.
see, i told you this would be long. are you still reading? i probably wouldn't be. it's getting scary!
two days later. the mole biopsy showed a positive test for melanoma. arrangements were made to get me into NYU cancer center. i scheduled the the lymph node biopsy. writing the address, i remember my hand shook as i wrote that word on the bright blue post-it note. CANCER. the c-word that is not cunt and is far more unpleasant. the c-word sank into my brain. my morning commute through madison square park became long, philosophical, circular strolls. i would get up early just to have time to think.
we're now in the last week in april. about three weeks ago. that is unbelievable.
the oncologist took one look at my lump and said, "the biopsy is a formality. that is melanoma and we have to take it out. let's schedule your surgery." she thoroughly scanned my body and checked out the lymph nodes in the throat and armpits. they took my blood. i was a little shaken. the nurse tied my arm and asked me to make a fist, which i did, on the arm that wasn't tied. that was not very helpful. we scheduled the PET/CT scan for the next morning.
three attempts at the biopsy turned up nothing but necrotic cancer cells, jet black fluid pulled from the center of the lymph node. that was a bit of a shock, watching a doctor pull black goo out of my leg. pretty gross. we scheduled the surgery for may 9th.
the month of may.
right now i'm at the last day in april. i'm reading through my posts over the last few weeks and realizing that they cover the story much better with their pleasant presence of the present. it would be silly to try and do it again, looking back and trying to be funnier than i was before, which was not particularly funny anyways. but i don't see myself doing much better. plus, my god, this is a really long post! i should stop soon.
so: here are the may archives. if you're interested in getting the story from the lymph node biopsy to the right now, go to the archives and scroll down to the bottom of the page, reading up from may first. that will bring you back to this post.
the latest.
i have two appointments tomorrow, one with my medical oncologist and one with my radiologist. by the end of that four or so hours at the hospital, i will hopefully know:
the treatment plan.
radiation will be involved.
how often? how damaging?
interferon.
how bad is it really? how sick will i be? do i need to get on disability?
melanoma vaccine.
still in experimental phase. are there side effects? is it worth it?
schedule.
when does all this get started?
expect a full update late monday afternoon after i'm through with the doctors. i'm just as curious as you are.
and if you've made it this far, thanks for reading. if you've just told your friend who i might know too that i'm recovering from surgery and their reaction is "whoa, how'd that all go down?" then you can just direct them here.
and a special thanks for my friends ted, willie and robert. i was feeling feverish last night at about 1 am and i didn't have a thermometer and nothing was open. and a couple text messages later i was hand-delivered a thermometer.
now that's love.
16 May 2008
Busy!
Thanks for all the messages last night. I'm over the initial shock of needing radiation and have come to realize that it's only because my body is so strong that they're willing to be aggressive. If I was 70 and in bad shape, they wouldn't be doing this. So my chin is back up from one of the few moments when my buoyancy around all of this dipped. Staying positive is exhausting!
It's enough to make me drink a box of wine, put on a garbage bag cape and attack a bunch of nerds with my crutches.
15 May 2008
Not so good news
It's a bit of a reality shock for me. Not that I've been taking this lightly, but it seemed like I could make it through a month or two of recovery and interferon and come out the other side with a couple of awesome scars and a cancer-free life. That life is obviously still a good possibility, but now I have to ponder the long term implications of radiation. Like going to a sperm bank. I'm serious.
Apart from the appointment on Monday, I'm meeting with my surgeon on Wednesday and hopefully we'll be pulling both the stitches and the drain. That would be a relief. I also have an appointment with an oncologist to talk about the overall treatment plan and I'm starting physical therapy to start rebuilding my back strength and eventually my leg.
I'm taking a break from company tonight - it's been wonderful to have so many great meals with friends and feel so supported, but I need a bit of a break and some time to decompress. Plus my first batch of netflix came and Stranger Than Fiction and Batman Begins sounds like a great double bill to take my mind off things.
In other news, my Mets need to get their act together. Losing three out of four to the last-place Nationals? Totally unacceptable. Can someone please explain to them that I'm already in enough pain?
THIS IS A REAL STORY!!!
'Darth Vader' spared jail in jedi church attacks
- May 14, 2008 (AP)
"We all love the films and what they stand for. Obviously some people are going to laugh about it," the Wales on Sunday newspaper quoted Barney Jones as saying last month. "But a lot of people do take it seriously."
Unfortunately for Hughes, his March attack was recorded on a video camera that the cousins had set up to film themselves in a light saber battle.
"Darth Vader! Jedis!" Hughes shouted as he approached.
Hughes claimed he couldn't remember the incident, having drunk the better part of a 2 1/2-gallon (10-liter) box of wine beforehand.
"He knows his behavior was wrong and didn't want it to happen but he has no recollection of it," said Hughes' lawyer, Frances Jones.
District Judge Andrew Shaw sentenced Hughes to two months in jail but suspended the sentence for one year. He also ordered Hughes to pay $195 to each of his victims and $117 in court costs.
In the 2001 United Kingdom census, 390,000 -- 0.7 percent of the population -- listed Jedi as their religion.
THE MORAL OF STORY IS:
DON'T MESS WITH GUYS WITH CRUTCHES!!!!
WE WILL DESTROY YOU!
ALSO DO NOT DRINK BOX WINE.
i'm a slacker
i am going to the doctor this afternoon and i'm anxious to see what will come of it. i have so many questions. when is my next scan? what is the treatment plan? when do i get this goddamn tube out of my leg?
i am planning on taking the subway to the doctor to see how it feels. my leg feels stronger every day and i'm already walking slowly around the house without crutches. i will definitely be taking the crutches with me today. of course i'll hop in a cab the moment i don't feel like i can continue. and i am also bringing a friend to look out for me and to provide a shoulder on which for me to cry when the downtown brooklynites start laughing and pointing at the cripple. it's a tough town.
my pain continues to lessen and i'm looking forward to trying to walk further than around the block. i have less and less muscle pain but the incision on the hip flexor continues to burn and my back still feels like someone kicked me in the kidneys with steel-toed boots. or maybe it feels like i fell off a balcony five years ago. which is actually what happened. thanks to my ex-girlfriend for accidentally pushing me off a balcony! although it was actually less her fault than the fault of Maker's Mark.
ah whiskey, the cause of, and solution to, all of life's problems.
before my parents left on tuesday, we were reminiscing that one year ago we were in spain together. here are my pictures. thought they might be a nice break from the cancer updates. it gets old, doesn't it? enjoy!
14 May 2008
Best advice ever
Work like you don't need the money.
Love like you've never been hurt.
Dance like nobody's watching.
13 May 2008
Numb (too much is not enough)
I worked hard this spring to make my patio pretty - yes, I am lucky enough to have a patio. And now it is paying off. The view above will hopefully be my view for the next week. Surrounded by fresh herbs and a bathtub full of a burgeoning strawberry harvest sounds like a pretty nice way to continue my recuperating. It's no luxury apartment on the promenade, but there's a nice breeze blowing and it helps keep my mind off the tearful sending off of my parents. What a gift that they could be here. And doesn't every mother want to spend Mother's Day being a mother to their child in need?
I return to the doctor on Thursday. Hopefully I'll have a better sense of what the future holds by then.
Waking up is hard to do
This is the last morning at my chateau d'convalescence and I'm nervous about leaving its embrace. Since Sunday, my folks and I have been staying at an apartment at Two Montague Terrace - a seventh floor two bedroom apartment that sits on the Promenade and looks out at the city. It's quiet and luxurious and I am SO not ready to leave! Also leaving means my parents are heading home. It has meant the world to me that they've been here and although I know I will be well cared for, there's obviously a level of care that they can provide me that no one else will be able to replicate.
So a return home is imminent. I hope I remembered to clean up the place!
Looking at this view, can you understand why I don't want to go?
12 May 2008
Day One
Stormy Monday
Ok now imagine that on crutches plus high on vicodin.
That's how my week has started! Awesome week coming up, definitely.
11 May 2008
Done.
A great relief, a stewing insanity
Ouch. Ouch. Ouch.
The percocet just isn't cutting it any more. All it's doing is making me feel like a junkie, narcotized and itchy, scratching everywhere but still totally overwhelmed by pain. I worked hard to get my back strong before heading into all of this but it's just not holding up after the weekend stuck in bed. Yeah, I know, GROINSTRONG! but right now my groin is pretty damn weak and so when I try to stretch my back it feels like someone is stabbing where my lymph node used to be.
In other news, my neighbor Mr Miller was involved in the invasion of Sicily.
GET ME OUT OF HERE!!!!!
Don't you know that things go in cycles?
I'm hoping that PT will come early today. I'm going a little crazy in this bed that I haven't left since friday and my back is f-ing killing me. I am so curious to see how it feels out of bed, what sort of range of motion and strength I will have in the leg.
Blogs are really the ultimate forum for the self-obsessed, aren't they? For those of you who've recently started reading, know that I tend to write mostly about stupid news items and post funny pictures and comics. Take a look at the archives! Once I'm out of here I promise I'll stop talking about myself and get back to important things, like so-called legless lizards which are just snakes and garfield cartoons without garfield in them.
In the meantime, I'm going to finish my papaya salad while my neighbor Mr Miller gets his morning enema.
Jesus, hospitals are rough.
OH HELLO THERE
GIVE ME PAIN MEDICATION RIGHT FREAKIN NOW THANK YOU.
Methinks this recovery may be a significant challenge.
10 May 2008
Recipe for sleep
Benadryl IV drip
Two exhausting weeks
Juana Molina in the ears
Turn on right side.
Cover with blanket and darkness.
Serves 1.
Weekend update
A pretty rough afternoon has turned into an easier evening, although the deathly rattle cough of my neighbor is definitely not the most reassuring sound I've ever heard. Luckily I have the soothing summer sounds of baseball on the radio to cover things up. He keeps complaining about his catheter and man, do I feel his pain. Seriously, screw waterboarding. Catheter insertion is a fine form of medieval torture.
The transition from hospital luxury suite to becurtained corner was not pleasant but after a long nap I had some nice visiting time. Attempted to eat the "chicken piccata" and well, it deserved quotes. And now it's time for some real food.
I've asked for a knockout cocktail tonight so hopefully I will actually get a solid night of sleep. It's been a long time since I've slept well, what with the stress-filled couple of weeks. It was hard to make it seem like I had tied up all the loose ends at work. Sweeping those projects under the rug was pretty tricky.*
I'll have some PT and work with my new crutches tomorrow morning and then I will be discharged! I'll let everyone know what the plan is - it looks like I'll be crashing at the stunning promenade apartment where my parents are staying until tuesday morning. Until then, thanks again for all the love and support!
*just checking if my boss is still reading
The honeymoon is over.
I am tired from the move. There is barely room in my curtained off section for another person. This is not the high point of the experience.
Time for percocet and nap time.
Feelin great!
Ameet and Jordan and Genevieve are here! I'm still in my beautiful suite and we're having a great time.
So why am I blogging?
LATERZ!
THANK GOD
Cool! Latest update from the good doctor.
Hey guys, thanks for some amazing late night conversations last night. I ended up sleeping from 12 to 1 and about 430 to 6. Not even the same five chords of Philip Glass could put me under. I managed to turn on my side and get to my usual sleeping spot, to no avail. Oh well. I'm just glad there were some west coast folks and bartender friends awake to keep me company. But I think today will be a pretty goddamn loopy day!
It's a good sign that I could turn on my side, and that I could even do it unassisted. And so it is that the LATEST UPDATE FROM THE DOC (all caps for those of you scanning) is quite a good prognosis.
She says my leg looks great! Some of the bandages will come off today and we may even be able to pull the catheter, which has the bane of my existence so far. They're going to move me out of step-down and to a room on the 12th floor at some point today. Hope the view is still as spectacular!
Most importantly, it looks like I can head home in the late afternoon/early evening tomorrow after some physical therapy and trying out the crutches. My parents are staying at an apartment on Montague Terrace until Tuesday morning and there's an elevator, so I might end up staying there til Tuesday. It should still be fine to come and visit but check in with Lynne since I may need some adjustment time.
Ooooh they just put me on percocet. Sweet! I'm going to make an attempt at a nap.
Good morning!
Yeah!
Addendum re: bridge. I am not looking at the queensboro bridge. It is in fact the 59th street bridge. My humblest apologies to you, dear morning reader. It was never my intention to lead you astray.
Feelin groovy!
Except for the catheter. TMI again? Let me know.
It's hard to gauge appropriate posting when you are a MIGHTY MORPHINE POWER RANGER!!!!
Thank you for that Lynne.
09 May 2008
Can't sleep!
Anyways, I've used the time to try and call people and let them know things are going well. It's been nice to be able to deliver good news.
Oooh wave of morphine.
Good night for reals!
Soul food!
I'm feelin good guys! Really, so much better than I expected to feel at the end of the day today. Still in pain but it's manageable.
Soul food: The matzo balls at the 2nd avenue deli are delicious!!! Why is the 2nd ave deli on 3rd ave? Ah the mysteries of life. It took me about an hour to eat a single matzo ball between bouts of intense nausea. But now it's in my belly for good. It seems like it's literally in there for good, considering how crazy constipated this morphine is making me. TMI? Sorry.
Soul food part two: ice!! The ice here is those little crunchy pellets that I have loved ever since I was a kid. It's the little things in life that are making me happy right now.
Soul food for entertainment purposes: my friend just brought me the first season of flight of the conchords. I've never seen it (I KNOW!) and I'm so excited! Now I wish I hadn't had that fight with my laptop this week and destroyed it forever (don't worry, it's insured and I'll replace it). I also have a loaner coming in for movie watching.
Soul food for, well, the soul: I can feel my body slowing down and am looking forward to getting some sleep. But as I'm winding down, I am looking out through the clearing cloud cover to the queensboro bridge and the lights shimmering in the haze and a barge is slowly rolling down the black water of the east river.
It's a good place to think. And you know what I just thought about? If all has gone well, I do not have cancer any more. That feels good.
Good night!
Oh and
Visiting hours
Hi everybody!
Things are going well! I got to the OR about 730 and it was surprisingly just like ORs in the movies. Why that was my last thought before going under, I have no idea.
I was in a helluva lot of pain after the surgery and it took them quite a while to step up my painkillers to the proper dose. I should have just explained to them that I am an ex-bartender with ex-hippie parents and my substance tolerance is quite a bit higher than the average bear. It was pretty excruciating for a while but we seem to have found the proper dosage.
I am in a 13th floor room looking out into the clouds. The east river and queens are out there somewhere!
I'm getting ready for a nap but a couple things before I crash:
VISITING INFORMATION:
I am at NYU Tisch hospital. The entrance is 520-560 1st ave between 32nd and 33rd street. My room number for now is 1347 but I'll be moving around I believe you will take the A elevator regardless of floor, but not exactly sure. To get up to date information, call the nurses station at 212 263 5650.
If you have any other questions, please get in touch with Lynne Rosenberg at lynne (dot) rosenberg (at) gmail (dot) com.
One last thing - there's a way to be automatically notified when I post new entries. Sorry though, I don't know how to do it. Ask internet.
Love to you all!
XO
Jonah
545 in the AM
so I'm catching up with my mom and trying not to get thirsty.
it is WAY too early to be awake and thinking about being cut up.
08 May 2008
surgery
latest update: i'm heading in for surgery at 6:30 tomorrow morning. i should be out by 9:30.
dang that's early.
the light spring rain
i miss the silver trees in madison square park.
yeah, i guess this is ok. but those trees were AWESOME.
07 May 2008
best boss ever, part two
by the way, possible treatments at present do NOT include radiation or chemotherapy. my doctor (bio here, in case you're curious) has said that interferon and use of a melanoma vaccine are more likely as initial post-surgical options.
i haven't worked here long enough to get disability. and it would suck to use my vacation days when i'm stuck in my bed with a hip-to-ankle leg brace or dealing with the flu-like symptoms that are a common adverse effect of interferon injections.
so today my boss started investigating transferring her sick days to me! and it looks like it's actually going to work. man, they take good care of me here.
my to-do list is growing faster than i check things off and i feel like my head is going to explode. also feeling explodey is my lymph node which feels like it has grown faster and firmer and bigger in the past two weeks. you guys, it's gross.
but it's a sunny day and i have the best boss ever.
guess what?
i just read this article:
Does cancer have a sense of humor?
it turns out cancer is hilarious!
cancer? i don't even know her!
HA HA! i kill me.
other blog
http://communequest.blogspot.com/
get in the zone of positivity, not negativity
anyways, i'm busy and not feeling great but that's life.
06 May 2008
most helpful appointment ever.
so here's the update after meeting with my aenesthesiologist and surgical nurse:
i don't know when my surgery will be, except that it's on friday.
i don't know where in the hospital i'll be, so i can't tell you about visiting hours.
hospitals are depressing. this weekend is going to be rough.
ok, back to work and wallowing!
05 May 2008
oh please
that ends today.
before i am laid up for a while, i am ready for a win. i just checked the standings and the team we are playing today is 0-2, with 5 runs for and 53 against. i don't want to jinx the team and we've been known to lose to some seriously bad teams from time to time. but i feel really good about this one.
i want a total blowout.
one last weekend on two legs (for now)
saturday! in the morning i went with my friend lynne to the dave eggers-curated exhibit at the apex art center in tribeca. i couldn't have asked for a nicer art experience. intriguing, moving and laugh-out-loud funny. it's on til may 10th people! and it's free! take advantage of those legs!
and of course in the afternoon was the kentucky derby. what a wonderful way to spend a day. mint juleps, pretty hats and pretty horses. so glad i finally made one of those crazy parties. also, i didn't realize how much i missed live band karaoke. i won runner-up for my performance of pat benatar's hit me with your best shot, which i almost dedicated to my cancer but thought better of it. so now i have a trophy that says MOST INSPIRING KARAOKE. i know the judges were swayed by the whole cancer thing. but i'll take it!
after dinner with my bandmates i returned to to union hall for a mind-blowing show by my new favorite band the acorn. this album has been a balm since my diagnosis - i can't recommend it enough. they're at piano's tonight and mercury lounge tomorrow. seriously, go see them. after the show i told them how important their music has been to me and what was going on and we had a good cry together.
sunday i learned an important lesson. DO NOT RIDE ACROSS THE BROOKLYN BRIDGE DURING THE FIVE BOROUGHS BIKE RIDE. my god that was awful. still, i spent most of sunday biking through this beautiful brooklyn home, feeling like if i pedaled hard enough through the warm spring sunshine and trees that i might actually escape my impending month or two of pain and frustration.
anyways, i've got to get to work. it's going to be a hectic week getting everything ready to be away from work for a while.
in closing:
02 May 2008
week. end. !!
in other news...
and to add to it, a new favorite band is playing later that evening. i've been listening non-stop to glory hope mountain by the ottowa-based band the acorn. for those of who attending the derby party, i'm planning on leaving after karaoke to get some dinner and then coming back for the show.
with the surgery coming up, i'm planning on moderating through the evening.
and by moderating, i mean going absolutely bat shit crazy, since this will be my last hurrah for quite a while.
watch out mint juleps! i am going to drink you so hard.
GROINSTRONG
it sounds like there's a whole fashion line being developed right now. keep an eye out for our full range of GROINSTRONG bracelets, trucker caps and of course, GROINSTRONG intimates.
i'm tired.
but last night i got my first chance to release and take a few solid deep breaths after 1) the scan looked clean and 2) my insurance said they'll cover all costs incurred. really a huge relief. so i spent the evening playing sad beautiful songs and trying to make it through without crying and then had dinner with a friend and watched harold and kumar escape from guantanamo bay, a.k.a. jonah and his thoughts escape from the weight of the last two weeks.
my entire office is on vacation today. which is kind of weird but now there's no one to stop me from having a super-productive day.
a.k.a blogging endlessly.
01 May 2008
good news
so now would be time for a sigh of relief, and maybe a glass of that macallan i've been saving.
the waiting is the hardest part.
i heart lesbians.
By Malcolm Brabant BBC News, Athens |
The term lesbian is now widely used to describe homosexual women |
Campaigners on the Greek island of Lesbos are to go to court in an attempt to stop a gay rights organisation from using the term "lesbian".
The islanders say that if they are successful they may then start to fight the word lesbian internationally.
The issue boils down to who has the right to call themselves Lesbians.
Is it gay women, or the 100,000 people living on Greece's third biggest island - plus another 250,000 expatriates who originate from Lesbos?
The man spearheading the case, publisher Dimitris Lambrou, claims that international dominance of the word in its sexual context violates the human rights of the islanders, and disgraces them around the world.
He says it causes daily problems to the social life of Lesbos's inhabitants.
Injunction sought
In court papers, the plaintiffs allege that the Greek government is so embarrassed by the term Lesbian that it has been forced to rename the island after its capital, Mytilini.
|
An early court date has now been set for judges to decide whether to grant an injunction against the Homosexual and Lesbian Community of Greece and to order it to change its name.
A spokeswoman for the group has described the case as a groundless violation of freedom of expression, and has pledged to fight it.
The term lesbian originated from the poet Sappho, who was a native of Lesbos.
Sappho expressed her love of other women in poetry written during the 7th Century BC.
But according to Mr Lambrou, new historical research has discovered that Sappho had a family, and committed suicide for the love of a man.take a breath.
but those same lovely folks just called and told me that other than my in-patient co-pay, they'll cover 100% of all costs. whew! and here's something funny - i'll get my "economic stimulus" check this week, so that will take care of the co-pay. so much for buying a new guitar. oh well.
how to let people know you have cancer.
Magnetic Field Softball Suffers Another Injury Setback (AP)
BROOKLYN, NY - Already working through a nomadic season without a home bar, the injury-plagued Magnetic Field softball team took another hit this afternoon when they placed long-time benchwarmer Jonah Eller-Isaacs on the 30-day DL due to an upcoming surgery.
Coach William "Snackbar" Crane explained, "Jesus, we finally get some momentum and now our players are dropping like so many pop flies in the outfield. What is this, the 2007 Oakland Athletics?"
Eller-Isaacs joins fellow MFers Matt "Sexier Than Young Paul Newman" Caplicki (ribs) and Mitchell "Don't Talk Shit About Chicago or I Will Kick Your Freakin' Ass" Bisschop (hand) on the disabled list. Caplicki injured himself during a week-long binge that ended with an ill-timed swan dive into the East River, and Bisschop recently got his hand stuck in a bottle of vodka, making it swell up, like, really big and gross.
Assistant Coach Jack "Skippy Dippy" McFadden asked reporters, "Does Jonah even play on our team? I only seem to remember losing when he was around."
Asked to comment on the two-year-long losing streak that the team has suffered when Eller-Isaacs takes the field, Mr. Eller-Isaacs replied with a long sigh, saying, "At least I throw good parties."
Eller-Isaacs heads into surgery Friday May 9th at the NYU Cancer Center and will be in the hospital through the weekend.
cancer loves sugar
to get the sugars flowing, the lab technician set up an IV, then brought over a big lead box, pulled out what looked like a small silver nuclear device AND THEN HOOKED IT UP TO THE IV AND PUT IT IN MY ARM. that was a little creepy. now i have a letter that i can give to people in case i set off any radioactivity detectors.
i gotta say though, the hardest part is SITTING STILL. no reading, no checking email, no texting. it was 45 minutes before the scan and then about an hour laying on my back and staying perfectly still. i'm not good at sitting still.
so now i wait for results. i should have a full pathology report by the end of the day, friday morning at the latest. i'm keeping my fingers crossed that the cancer is localized to the mole/lymph node area on my upper left leg.
in the meantime, i'm hoping that my exposure to radiation and gamma rays will give me some sort of superpowers. i'm thinking flight, or maybe reed richards' stretchy body.