Since yesterday evening, I’ve been the sole occupant of my house. The beasts went away for the weekend and I have been sleeping, crocheting, and watching the entire first season of The Newsroom[1. Oh, so awesome. Annoyingly unprofessional with women who are annoyingly prone to hysteria, but so, so smart about the news. So very smart about the news].
Tomorrow morning, when for the second day in a row I may wake up after 7AM, my parents and my brother will be participating in the annual fundraiser they help organize for pancreatic-cancer research. I’ll be very grateful for my quiet, therapeutic weekend, but I’ll miss them terribly.
Did I tell you last winter that my dad had cancer? It’s possible I didn’t. I’ve been in a haze of chaos for the last few months, and my memory’s pretty shot. This weekend is the beginning of forcing my life back into some semblance of normalcy. But this post isn’t about my shit.
This post is about the malignant tumour my dad had removed from his kidney last February.
Know what was weird? That time my gadget-freak dad phoned me to ask how to change a setting on his iPod.
Seeing my dad several weeks after he recovered from complications from kidney surgery? That wasn’t weird. That was alarming. He weighed less than he had since I was a baby. His voice was weak. He looked old, and not only because he’d taken to wearing his reading glasses on a chain around his neck.
Know what was awesome? Seeing him a few months after that, back to his old self.
I learned last winter that kidney cancer, like the pancreatic cancer that runs in my family, is often found too late to treat. Like two years ago, when my dad had part of his pancreas removed after early screenings discovered precancerous activity, those same screenings indicated a mass on his kidney.
The screenings he undergoes, in addition to possibly saving his live twice now, are also a part of research into familial pancreatic cancer. The aim of these studies, in part, is to develop less invasive, far more affordable screenings for this disease that currently has only a 5% five-year survival rate.
So every year we raise funds to support this research. The Lustgarten Foundation for Pancreatic Cancer Research funnels 100% of funds to research because their operating costs are paid for by the Cablevision company.
So if you’ve been touched unkindly by pancreatic cancer or if you love someone who has, please consider donating.
I’ll be with my family in spirit tomorrow, and I sure hope this coming year my dad will be a fully healthy participant in what will hopefully prove to be momentous research for every human, everywhere.
As you well know because I won’t shut up about it this summer, pancreatic cancer runs in my family on my dad’s side. Because of this, my father has both participated as a subject in research into familial pancreatic cancer, and for the last several years has received regular screenings of his pancreas. There’s no simple early-detection test for the disease, which is why its dreadful five-year survival rate is only 5%.
Every September, my parents help put on a fundraiser for the Lustgarten Foundation for Pancreatic Cancer Research, which helps to fund explorations into early-detection, treatment and cure. Sometimes I fly out to Albany, NY, to walk the walk with them, and sometimes I help raise funds from afar. I hadn’t been planning to attend the walk this year, but since Dad had such good timing with his surgery, I’ll be there for it on Sunday. (Live near Albany, NY? Come walk with me! It’s easy to register!)
The crafts community has been totally awesome in helping to raise funds – and, importantly, awareness – too. Check out the Pancreatic Craftacular! Go shopping!
And now, here’s a more general shebang. A couple of people offered to donate some amazing yarn and fibre, and I think the best way to have fun with it and raise money is to give it away.
My friend Amanda recently moved (you may recognize her from the last contest I ran here). And as many people feel compelled to do when they move, Amanda needs to destash. The first prize in the contest is over $300 worth of Amanda’s stash.
Rachel from Dyeabolical® hasn’t recently moved, to my knowledge. But she still wants to give some fibre away. Because she’s awesome. So the second prize is $65 worth of her hand-dyed wool for spinning, and a spindle. So even if you don’t spin, you’ll be all set to learn. And if you do already spin, BONUS.
All you have to do to enter is this: Make a donation to the Lustgarten Foundation by following this link to sponsor me, or by supporting another participant in the fundraiser, or by buying from sellers in the Pancreatic Craftacular or by simply making a general donation to Lustgarten (it totally counts if you’ve already donated or bought things – you don’t have to do it again). Leave a comment on this post saying you made a donation or supported the Craftacular. No need to say how much you gave or what you bought; it’s just the donating that’s important. I trust you. It’s the honour system. Any donation or purchase counts equally, no matter how small or large. And as I said, it doesn’t matter if you made the donation yesterday or last week or last month, or if you make it today.
The contest closes on
Monday, September 13th, 2010Wednesday, September 15th, at noon Pacific time.
After that, I’ll randomly draw two winners.
It’s possible I’ll be traveling home at the time the contest ends, so I’ll ask you to be patient if winners aren’t contacted until Tuesday the 14th.
Go forth, yarn and fibre lovers, and help conquer pancreatic cancer!
For someone who has an extraordinarily low tolerance for structure, I’m really missing my normal routine. It may not actually be the routine I’m missing, but the space? I miss my home. My jogs in the woods. Greg and Cleo. The quiet time I need to keep busy and sane.
I haven’t had much time to myself in more than two weeks and I’m starting to go a little Dr Jekyl on my usual, though admittedly quirky, Mr Hyde. On top of that, though I’ve kept the Twitter at my side, I’m feeling out of touch with all of you. So help me keep my sanity, hey? Drop me a note in the comments and tell me about something creative that’s got your brain buzzing, or tell me a story.
Ok, here’s that catch-up. Dear, bulleted list, it’s been so long.
- My father’s surgery was a great success. The wonders of modern medicine! The feats surgeons can perform laparoscopically! Anyway, he’s a little lighter in the internal-organ department, and there’s no sign of cancer. My parents got to meet the principle investigator on some studies that are funded in large part by the Lustgarten Foundation, which is pretty cool. We’re all feeling very thankful for those studies, and for the opportunity my dad’s had to receive early screenings for pancreatic cancer. He may deny that while he sits in his uncomfortable crankypants recovering from surgery, but in a few days I imagine he’ll be climbing ladders to sing it from rooftops. Tevye, watch out.
- Speaking of the Lustgarten Foundation, the Pancreatic Craftacular is going strong! Twenty crafty business are donating proceeds, and I’ve heard from some who have been very touched by the notes they’ve been receiving from customers who have been touched by pancreatic cancer. I’m touched, too, by the stories and by our community in general. In my imagination, I’ve been hugging you every day is week. Also, keep your eye on this here blog for a nifty blog event coming up.
- I love Montreal. Love love love. Being there at this particular point in my life highlighted for me the growing discontents I’ve been brewing about Vancouver. After a very long honeymoon period in my lovely city, I’ve come around to agree with what pretty much every non-native I’ve ever met has said about the place: The people are friendly, but they’re really hard to get to know. I want to grab Vancouver by the shoulders and tell it to lighten up. To chill out. To laugh, dammit, and do it a little louder. Vancouver may have that west-coast, outdoorsy vibe that presents the illusion of people being chill. But really, there’s an undercurrent of intensity that isn’t actually very welcoming. It’s intimidating. And I think that’s dumb. Montreal has a vitality (dare I say it has that je ne sais quoi) that’s contagious. Maybe I’ll try to be more French when I get home. I’m sure it’ll break through that British stoicism if I start kissing everyone I greet. I’ll end this rambling now, but be prepared for more musings about it as I ponder and explore.
- The wedding in Montreal was about the happiest, danciest, loviest wedding I’ve ever been to. I danced in four-inch heels till well after midnight, and ten days later the balls of my feet are only now beginning to feel normal again. Good times. Want glam? Ok.
- I want to punch Tom Robbins and his stupid, self-indulgent clever sentences in the face. I spent two weeks trying to read Even Cowgirls Get the Blues, and eventually had to take a deep breath and give up. I want to know what happens to those lovable characters, but not enough to slog through those damn words. This is a book better off tweeted, one cutesy clever sentence at a time.
- My brother and I went to Baltimore Comic-Con last weekend (this was before we started hurling insults at each other, which is what happens three days into every visit). It was RAD. I met Joel from Hijinks Ensue, fell in love with David Mack (his work, his work, which has nothing to do with him being totally sweet and also adorable), and otherwise had a blast in a room filled with costumed people young and old.
Okey dokey. I wrote half of this on my laptop and half on my iPad and who knows how disjointed and poorly laid put it is.
As you may know from my vague and sporadic tweets and all my allusions to stress, last week was a tough one.
See, the day before we left town for Greg’s grandfather’s funeral, we got a call from my parents after one of my dad’s routine pancreas screenings. He gets those about four times a year. The short story is this: About 10% of pancreatic cancer cases are hereditary, and my family’s one of those affected. My father’s mother, brother and sister all died before the age of 70. After my uncle Bruce died several years ago, we discovered the Lustgarten Foundation for Pancreatic Cancer Research, and it has given my family something to rally around instead of feeling like walking cancer time bombs.
One of the main reasons pancreatic cancer is so deadly (95% of patients don’t survive five years) is that the cancer is asymptomatic until it’s too late. And if there isn’t a familial link, there’s no reason to do the invasive, expensive screenings to test for it before symptoms arise.
So the bitter irony of the story I’m about to tell you is that the only reason my father gets routine screenings is that so many of his loved ones died young.
Dad, and some of my older first cousins, participate in a study of hereditary pancreatic cancer that’s funded in part by the Lustgarten Foundation. At his last screening, about ten days ago, his local doctor in Albany, NY, found a mass in the tail of his pancreas. They sent the results to the leader of the study at Johns Hopkins, and she said she wanted to see Dad as soon as possible. Six days later he flew down to Baltimore for more tests. It was the day after Greg and I returned from the funeral.
That one full day waiting at home was one of the most stressful, trying days of my life. There was nothing to do. No emergency flight home to arrange. No doctors to call. Just me and my overactive imagination, doing dances around each other.
I did my best to hold myself together. I didn’t pace too much. I spent lots of time on the phone with friends and family.
It was only come evening that Star Trek made me cry. Greg and I decided to distract ourselves with television. We’ve been watching The Next Generation. Surely great sci-fi would do the trick.
Irony, however, seems to be the theme of the month. Season 3, Episode 5: The Bonding. The entire damn episode is about a boy whose mother died on an away mission, leaving him an orphan. Wesley Crusher, teen phenom with some astonishing ’80s coifs, played by Wil Wheaton, was brought in to talk to the boy about his own father’s death a few years earlier.
Seriously, people. Give me a break.
I lost my shit.
Actually, don’t let my overdeveloped tendency toward melodrama fool you. It felt pretty good to lose my shit. I love fiction for its ability to help us work through the confusing and overwhelming plane of reality. As Wesley talked about his anger and his grief, I sobbed and thought about how much I love my dad. I acknowledged how terrified I was that the tests would show a metastatic tumour. That the prognosis would be grim. Grim prognoses are what we’re used to when pancreases are involved.
Poor Wesley Crusher was like the Dawn Summers of the late ’80s – decried as a dreadful whiner and as just plain annoying – but after the moment we shared the other night, I’ll forever be his champion.
I got a call much earlier than I expected the day of the tests. It was my brother, who told me it seemed to be good news. Excellent news. Preliminary findings didn’t indicate cancer at all. No dire prognosis. No emergency flying.
My dad still needs surgery. At a minimum, he needs to have the tail of his pancreas removed, and along with it his spleen. He’d like to take the whole damn organ out, which is something people with a family history like ours can do. If he’s able to work that out with his doctors, he’d live the rest of his life like a diabetic, dependent on insulin and also digestive enzymes to survive. But he wouldn’t feel like a time bomb anymore. He’d know he wouldn’t again experience the same terrifying shock he did this month.
And all this six weeks or so before the annual fundraiser. The fundraiser that takes on new meaning for me this year because I credit the study, and the foundation whose money helps fund it, for catching my father’s tumour before it could morph into a deadly beast.
The boy on Star Trek was twelve. I may be thirty-four, but I’m certain I’m too young to lose a parent. My parents have a lot of life left to live.
So this year for the fundraiser I’m again asking you for money. Even the tiniest donation can go a long way, but I know times are tough and you have your own causes to support. So I’m also asking you to go shopping, which as we all know is different. Some very special crafters have volunteered to donate some or all proceeds from some of their products to the Lustgarten Foundation as part of my campaign. They rock, and you probably want their stuff anyway. If you’re a maker, please consider donating some proportion of the proceeds of something you sell. This way you can jack up your prices, and help to spread the word about this very important research. If you’d like to participate, please fill out the form in the middle of that page, or drop me an email.
Right now the research supported by these funds is important to me and my family in ways I hope you can understand from this post, but as the research advances I hope it will produce answers that will be important to absolutely everyone.
I started off this morning crying before I even had a chance to drink my coffee.
Last September when I went to Albany, NY, to participate in the fundraiser for pancreatic cancer research my parents spearhead every year, it was bittersweet to bump into Janice, an old high school friend. We hadn’t been close friends, but I’d sure liked her a lot. It was sad to see her because her family was at the fundraiser to support her father, who’d been diagnosed with pancreatic cancer.
It’s very hard to talk to people who love someone who’s recently been diagnosed, because unlike with many other cancers, there’s very little hope of survival. When someone tells me their father’s been diagnosed with pancreatic cancer, I know it’s likely they won’t survive a year. That’s a shitty context for reconnecting with an old friend.
Last night, Janice’s father died. Jay was a journalist and he blogged prolifically throughout his illness. If it won’t derail your day to get a little emotional, you should head over there and witness the honest, rich life he lived during the last eleven months, and meet his family. They’re lovely people and I hope they can keep Jay’s strength with them as they learn to live their lives without him.
The Upside Down
As my friend Chris has been saying so frequently recently, fuck cancer.
There’s four months until the big Albany fundraiser on 12th September. I don’t think I’ll be able to get out there this year for it, but I’m going to participate in the walk on my family’s team in spirit, cheering on the several hundred walkers and trying to raise some serious cash.
Last year you helped me raise almost $2,000 USD for the Lustgarten Foundation for Pancreatic Cancer Research, the recipient of the more than $45,000 raised during the Albany event. Lustgarten is able to put 100% of raised funds toward research because a corporate sponsor – cable company Cablevision – covers all their operating costs. The research they help fund will hopefully lead to the discovery of early-detection tests that will allow pancreatic cancer to be discovered before it’s too late (it’s usually discovered too late; that’s part of the survival problem). My father and several of my cousins participate in some of that research. Hopefully by the time my brother and I are in our 60s, the results of that research will allow us to feel a little less inhabited by a cancer time bomb.
(See in the photo how they call it the “Walk for Hope”? Hope would be a pretty freaking amazing advancement in the realm of pancreatic cancer where, as I mentioned, very little hope exists.)
The Big Time
I had a dream (it might have been a hallucination) about the crafts world knocking pancreatic cancer out of this world. In my dream, this was quite literal. There was like a war of rainbows and glitter and felt and glue and pins and needles and a hell of a lot of wool and jewelry and monsters and creatures, and pancreatic cancer was outta here.
I think we can, within the natural bounds of physics, maybe make this happen.
If you’ve got some money…
Please donate to support my virtual walk. Every dollar counts, so you don’t have to have a lot of money.
If you live somewhere near Albany, NY…
Please consider attending the walk and raising funds on your own. I guarantee it’ll be a fun time, and my parents will love to meet you. (If you attend, you simply must march up to them and introduce yourself.)
If you’ve got an audience large or small…
Please talk with them about pancreatic cancer, and please send them over here so they can help out and maybe make a donation, too.
If you sell your handmade goods…
Please consider donating some of your proceeds according to any system you’d like. For example, you could designate one item in your shop and say you’ll donate the sale price of that item. Or you could designate June or August, or even July, as pancreatic cancer research month, and donate some percentage of your sales for that month. Or you could make several items of a particular sort and donate those sales. However you’d like, according to whatever you’re comfortable giving. (And of course, feel free to inflate your prices as much as you think your customers will endure!) This would be a great way to inform lots of people about the huge need for pancreatic cancer research, and I bet they’ll enjoy knowing they support a generous seller such as you.
No good deed will go unnoticed!
If you participate in raising funds via sales of your handmade goods, in addition to loving you in that ooey gooey cyber way I’m known to feel for people who support my family, I will promote the hell out of you on a very special page right here on my website. On that page, I will put a link to your shop or to the particular item you’re selling as a fundraiser, with a description of how you’re helping. And I will tell everyone I know about this special page.
If you’ve already listed your pancreatic-cancer-research-supporting goods, please tell me all about it right here:
If you’d like to donate an item to the pick-a-prize auction that’ll be held on the day of the event, please email me and I’ll let you know how you can do so. Donated items should be valued at no more than $50 each.
If you have ideas or suggestions for how to raise even more money and thus possibly save many people from tragedy…
I’m all ears!