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30 July 2012 / stageivhope

A Message From Poop Strong HQ

Friends, it has been a crazy couple of days.

When I started Poop Strong six months ago, I never expected that its main mission — to raise the funds needed to cover the cost of my cancer treatment — would be moot. I expected August to roll around with me still on chemo, still dealing with the avalanche of paperwork and billing that comes with treatment, still wondering about how I was going to pay for it all.

Here we are, with August just around the corner. I’ve been off of chemo now for several months, and while there are still mountains of paperwork, I no longer have to worry about where the money will come from. And for that, there is only one thing I can say: THANK YOU!

This amazing turn of events could never have happened in a vacuum. The success of Poop Strong is because of the more than 1,500 people who bought something, who donated money or raffle prizes or t-shirt designs, who shared my story, who participated in the Twitter conversation that made my current peace of mind possible. The outpouring of support from friends, family, and total strangers has been overwhelming. There are no words that can fully explain how deeply grateful I am to each and every one of you.

Because of all of you, not only are all my bills going to be paid, but I will be able to donate the over $100,000 we collected since February 15 to other cancer patients in need — people who lack the time and energy and resources and connections to do what I have done. No one should ever have to choose financial stability over health, and no one should have to go through this sort of thing alone. My bills have been paid, but there are many others who are not so lucky, who fall through the cracks of our broken healthcare system. Thanks to the kindness and generosity of untold people, we can help provide a beacon of hope,  shine a spotlight on how the status quo is untenable, and hopefully bring about the necessary changes that result in a more compassionate, sane, just, and equitable healthcare system.

12 June 2012 / stageivhope

So Many Raffles

Since I’m on a roll with updating the blog, I might as well give a quick update on Poop Strong fundraising efforts. Fundraising had slowed down to a trickle as of late, but things are starting to pick up a bit once again thanks to some new items I’ve added to the Poop Strong webstore. Many, many friends new and old have offered items for me to offer to the masses.

I just finished up raffles for some cookbooks signed by Mario Batali and Spike Mendelsohn, as well as the recently released travelogue by Doug Mack. (Thanks to Leah Daniels/Hill’s Kitchen for kindly providing those goods.) And very soon, we’ll be closing raffles for some signed music and comedy-related merch and more from artists Islands, The Hold Steady and Mountain Goats, and comedians Eugene Mirman and Todd Barry.

Meanwhile, just this past week, we added some sweet new raffle items: crocheted cowls and afghan from my friend Molly and her mother, a handcrafted mola from Panama, autographed CDs from string quartet Brooklyn Rider, a personalized musical arrangement by composer Jen Wang, a travel/writing consultation with author Doug Mack, a chance to win an all-access pass to Fugazi’s live concert archive, and a pair of tickets and all-access passes (i.e., the opportunity to meet the band post-show) to any date on Tenacious D’s upcoming US tour.

Yes, these are some pretty awesome prizes. Thanks so, so much to all of you who have offered these great prizes, as well as all of you who’ve purchased raffle tickets.

And, as always, all proceeds go to cover the costs of my treatment and related medical expenses, with any excess money going to the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community – Arizona.

12 June 2012 / stageivhope

People Are Good. And I’m Lucky.

Despite what I wrote in my last post about the ridiculousness of the situation I’m facing with insurance and how infuriating a situation it is, that’s not to say that I’m not deeply appreciative of the kindness so many hundreds have shown to me. As I’ve written before, I have a renewed sense of faith in humanity thanks in part to the love and kindness I’ve been the lucky recipient of.

As just one example of the amazing support I’ve received, I wanted to share with you all a beautiful story from a couple months ago.

Back in April, I tabled at the ASU Farmers’ Market, selling my wares and generally spreading the word about my efforts to raise money to cover the costs of treatment while I’m uninsured. While there, I met a wonderful family, the Sharks, who just happened to be walking through campus. They stopped by the Poop Strong booth, bought a Poop Strong shirt, and told me they’d spread word to their friends about the website and my fundraising.

Then, a couple weeks later — out of the blue — I heard from them again. Turns out that seven-year-old Carsyn was so moved by my story and motivated to help,  she and her friends organized a bake sale at their soccer games. Selling baked goods to their friends and the families and fans at their games, they managed to raise some $130! We met up in Tempe a few weeks ago so Carsyn could present me the proceeds of their bake sale. It’s easy to be cynical these days, so it’s nice to remember how wonderful people can be.

Bake Sale

 Treats for Arijit

12 June 2012 / stageivhope

Some More Media Attention

Just wanted to let you all know I got a bit more coverage for my insurance woes and fundraising efforts. After having some “human interest story”-ish coverage via the local news piece that aired here a couple months ago, it was nice to speak to a reporter from The Nation about some of the bigger picture issues: the fact that what I’m facing with lifetime insurance caps simply shouldn’t be happening in a civilized society and the importance of ensuring access to quality, affordable healthcare for all. No one should be denied healthcare because they can’t afford it and insurers shouldn’t be able to discriminate against the sick simply because they are less profitable to insure. When millions of others are denied insurance like me, what is evident is how misplaced our priorities have become. Money for constant warmongering? Check. Money for ensuring access to the best healthcare in the world? Not so much. (I touch on this a bit in the piece: “Guha says the state of Arizona made matters worse when the state ‘decided it was more important to cut [healthcare] and distribute a few tax breaks to rich people than have a decent social safety net in place.’”)

While I wouldn’t have framed my story within the context of young people and voting for Obama had I been writing the story myself, I was glad to be able to have a venue to speak about the political side of my struggles. And given how rambling I can be when I talk, I was happy to see that the writer was able to rescue some fairly coherent and vaguely intelligent quotes from me.

While I’m very lucky that my fundraising efforts have gone so well, I think it’s important to note that the real story here shouldn’t be a heartwarming one of turning lemons into lemonade; rather, it should be an infuriating one of how our healthcare system in this country has failed insofar as it allows for people with serious medical issues to be denied insurance coverage. To quote, um, myself: “A sane, just, equitable society is one where we pitch in for one another when someone is needy.”

25 May 2012 / stageivhope

A Brief Fundraising Update

Things have slowed down a bit on the fundraising front, but I’ll be making another big push in a couple of weeks. Fortunately, the chemo break has the added benefit of reducing costs a bit. At the moment, we’re still ahead of costs, with around $115,000 raised and nearly $87,000 in costs that have come in so far. Expected costs between now and August 1 still exceed what we’ve raised so far, though once we step up the fundraising efforts in June with new goods in the webstore, I’m confident we’ll raise the rest of the money that’s needed.

At the moment, we’ve got a bunch of raffle items available at the Poop Strong webstore, including some fantastic items donated by Hill’s Kitchen such as signed cookbooks from noted chefs Mario Batali and Spike Mendelsohn and a book from Doug Mack. And there’s more on the way, as we try to come up with as many ways as possible to raise money to cover the costs of my treatment. Some new t-shirt designs, a poster, a music compilation, and raffles for crocheted goodies, baseball tickets, writing consultations, a customized musical arrangement, and more coming to the site in June.

And don’t forget: to keep up with the latest on what’s new with Poop Strong, follow us on Twitter and like us on Facebook.

25 May 2012 / stageivhope

Ablated, Charbroiled, and On Break

It’s been many weeks since my last health-related update (as opposed to fundraising update), and there’s much news to share. And most of it is very good news.

Let’s begin all the way back in March: I had one of the intermittent scans I’ve been getting throughout treatment. Unlike the previous scans, which were PET-CT scans, this one was an MRI. The earlier scans had not been especially helpful in showing some of the micro-tumors in my soft tissue and the hope was that the MRI would be able to better identify the remaining growths I had, as well as anything new to be worried about. Thanks to a computer malfunction, which left me stuck in the machine and unable to move for some 30 minutes, the MRI took a bit longer than expected.  But aside from that, it went off without a hitch — and it was nice to avoid drinking the pretty awful-tasting barium milkshake the PET-CT requires. Of course, it’s not descriptions of being in an MRI machine that interested in, so on to more important things…

We soon received the results, and learned that I had a very small lesion (4 mm in diameter) on the right lobe of my liver. The radiation oncologists at the cancer center who interpreted the imagery were fairly convinced it was malignant, though my oncologist was less certain of that — mainly due to the fact that there was no visible growth boundary around the lesion. In any case, the consensus among the team of doctors consulting on my case was to deal with the growth immediately. Due to its small size, doing a biopsy on the growth wasn’t really an option (because it was quite possible that the probe would miss the precise spot of the growth, thereby sampling non-lesion cells), so I was soon scheduled for a radio frequency ablation — essentially a minimally invasive procedure in which a probe is inserted into the abdomen and directed to the site of the suspicious growth via CT, and then blasted with heat, thereby destroying it and a small area around the site; the NIH has a useful short video explaining the procedure here:

(If you watched the video above, you may have noted what is possibly the worst and most disconcerting medical term ever: charbroiling. Ah yes, since the ablation works by applying heat to the site of suspicious growth, there’s a chance that the heat could end up burning some other nearby tissue, as well — i.e., cook the tumor and you might cook some additional flesh. And for some reason, medical professionals decided to call this collateral damage, of sorts, “charbroiling.” As it turns out, since I have little fat and the growth in my liver was near the surface, there was a good chance I could end up being a bit charbroiled.)

I was scheduled to be ablated in mid-April. We were joined by my parents, who came out from Columbus. The procedure itself went quite smoothly and I was quickly discharged after spending a night in the hospital for observation. Though, as it turns out, the capsule surrounding my liver did get a bit charbroiled. (Which means I can now say that I’ve been “filleted, disemboweled and then bathed in hot poison” and charbroiled. Lucky me!) Yet, despite the charbroiling, I held up quite well. In fact, in a somewhat strange occurrence, I experienced virtually no pain and had no nausea. I was given a prescription for some opiates, but I never even bothered filling it. (One of my nurses actually commented to me during my short stay: “You’re not in pain and you look great; you don’t need to be here.”)

Despite the scare that accompanied an unknown and quite possibly malignant growth on my liver, things went about as well as they could possibly go. I’d be lying if I said I wasn’t a bit scared going into the procedure — I’ve read far too much about the standard progression of disease and know that things often turn dire once the cancer spreads to organs like the liver and lungs. But this story ends on a much more cheerful note than that: when we went back down to Tucson for follow-up appointments with the radiologist and then my oncologist, we got confirmation that the doctors were able to ablate the entire growth, and with no additional suspicious growths or tumors visible in the latest imagery, my oncologist proposed that I get a six-week chemo break. And, my friends, I said yes. (I never really formally proposed to Heather, and now I know what she missed out on — being on the receiving end of a proposal and saying yes sure is pretty swell.)

So, for about three weeks now, I’ve been on a chemo break. Recovery from the ablation was very quick, so for most of this time I’ve really been able to enjoy things. Meanwhile, side effects of chemo I haven’t been missing include: nausea, vomiting, hand and foot pain, sensitivity to cold, blistering and peeling skin, painful acne, and being immunocompromised. After 20 or so rounds of chemo between the XELOX + Avastin treatment I was on last spring and summer and the FOLFIRI + Avastin treatment I’ve been on since last fall, I’d gotten pretty used to being on chemo and dealing with the side effects. But no matter how well I generally tolerated treatment, not having to deal with any of that at all is wonderful.

Even some three-plus weeks later, I’m still not sure I’ve fully absorbed the good news. Perhaps it’s because every health-related surprise I’ve received over the past year-and-a-half hasn’t been good up until now, so I’m not quite sure how to deal with good news. And I’m sure part of it is that things can always be so unpredictable and change so quickly with cancer that I’m always hedging my bets to some extent. But see, here’s the thing: this is really good news. Last February, I learned that the lining of my abdomen was almost completely covered in small tumors. When I had the HIPEC procedure done last August, the doctor assessed my peritoneal carcinomatosis index (a measure of how far cancer has spread within the abdomen) as pretty much the highest it could be while still allowing for surgery. And despite spending some ten hours slowly stripping away most of my abdominal lining (and chopping out my gallbladder for good measure), the surgeon figured he was only able to remove about two-thirds of the tumors he saw. So, less than a year later, for there to be virtually no sign of any disease is as big a surprise as there could possibly be. It’s absolutely astounding. For most people, things simply don’t go this well; after all, most patients diagnosed with late-stage colorectal cancer don’t even make it a year. But I’m tough. I’m a fighter. I’m lucky. And despite the odds, I’m forever an optimist, hopeful that the good surprises keep on coming.

What happens next is a bit up in the air. It’s possible my chemo break could be extended, but it’ll all depend on what we see on my next MRI. I’m scheduled to go back down to Tucson in mid-June for another stint in the MRI chamber and will meet with my oncologist once the scan has been interpreted and presented to the various doctors consulting on my case in the weekly conference that the team has. If there’s anything suspicious-looking, I’ll be back on chemo, but if not I could have an even longer chemo vacation. Fingers crossed.

16 April 2012 / stageivhope

On The Airwaves

The local NBC affiliate here in Phoenix just covered my story on last Thursday’s newscast; this was the lead story on the 5pm news.

[Update: the video link doesn’t seem to work for some people; here’s another link to the story that should work, as well.]

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