I assume that many of you know already, but Arijit died at 10:30am on March 22. Below is the email I sent out to close friends and family.
It has been almost a week since then, and yet it feels like forever. I have a hard time keeping track of the days; the past two weeks all flow together into one continuous blur of sickness and improvement and deterioration and grief.
I plan on keeping this space open, at least for a time, as a place to work out the thoughts and feelings that race through my head and my heart. I don’t yet understand this thing called grief—I doubt I ever will—but as a snooty English major, I believe in the power of words to comfort. Perhaps once I put these things into words will they begin to make sense.
***
I know some of you have heard the news, but I wanted to tell you all (semi)personally: Arijit died this morning. He had been deteriorating in recent days, but he went quietly and gently, comfortable and free from pain. He was surrounded by love, with me by his side and Pancakes snuggled up with him in the bed. It was, in the words of his hospice nurse, the most peaceful passing she had ever seen.
It had been a rough week, as he had been exhausted and spent most of his days sleeping; when he woke, he was often very confused and disoriented, and his wakefulness was very brief. However, he did have some moments of clarity and awareness, and I will be forever grateful for those times when I got the real Arijit back. I got to hold him and hug him, and be held and hugged by him. I got to tell him how much he meant to me, even though I know he already knew. I got to talk to him and hear him laugh. The last lucid thing he said to me was, “I love you.”
There are not enough words to thank you all for the kindness, support, and love we both have received these past two years. Arijit was so incredibly fortunate to have such a vast and loyal network of friends, and he was so deeply appreciative of and grateful for each of you. He wanted you all to know how much he loved you and how much it meant to him to have such wonderful people in his life. I cannot thank you enough for everything you have done for him, and I am so grateful that I married into such an amazing group of friends and family. I have never known anyone who could inspire others—including complete strangers—to strive to be better people the way Arijit could, and the fact that he saw his inspirational acts as simply the duties of a decent human being says more about the kind of person he was than my words ever could.
My heart is broken, but I am comforted by the fact that I was loved, and will always be loved, by one of the greatest men to have ever lived. As much as it hurts right now, I know that I got to spend seven fantastic years with my soulmate—that’s more love and joy than most people get in an entire lifetime. I will carry Arijit with me forever, and will do my best to be worthy of his love and leave my world a better place than I found it. Just like he did.
In one of our last conversations, I had told Arijit that the world would be a much darker place without him in it. He told me I was wrong, and that while things would be hard, the world was a beautiful place and would continue to be beautiful after he was gone. I have a hard time believing him, but I know he would not lie to me, so I am trying to keep this in mind as I figure out a way to get through life without him. His 32 years were far too few for this world, but I will spend the rest of my life doing what I can to spread love throughout the world and continue his legacy of compassion, optimism, and hope. I hope you all will, too.
We know that some of you have been receiving information about Arijit through the grapevine, but since it has been some time since we’ve posted any updates to the blog, we wanted to let everyone know what is going on and allow people to hear the news straight from us. We’ve greatly appreciated the positive concerns, phone calls, emails — and our apologies for just being too overwhelmed to respond to so many of you.
Last fall, after a wonderful summer-long chemo break that we spent going on road trips and having adventures and generally enjoying life, Arijit started experiencing some severe abdominal pain. Several ER visits and hospital admissions later, we learned that the tumors had returned and were putting pressure on his bowels, creating blockages and essentially shutting down his GI tract. To ensure he was receiving adequate caloric and vitamin/mineral intake, he was started on TPN (total parenteral nutrition—IV feedings), and he began another round of chemo, with the hope that the treatment would cause the tumors to shrink and allow his digestive system to start working again.
Unfortunately, even though he wasn’t eating or drinking, his stomach was still producing gastric acid and bile; since it couldn’t get out the normal way, he had frequent episodes of nausea and vomiting, sometimes throwing up upwards of six times per day. He tried various medications to jumpstart his gut and cut down on the acid secretion, but nothing worked. Finally, in December, he had a gastrostomy tube (g-tube) placed in his stomach to help drain the accumulated fluid. The g-tube basically bypasses his GI tract and drains into a bag, allowing his stomach to decompress and preventing any fluids (including stomach acid and bile) from filling his stomach and causing him to throw up. Since having the tube placed, his vomiting has become practically nonexistent, and he’s been able to enjoy a liquid diet.
However, when the surgeon was placing the tube, he saw that the tumors had re-infiltrated his abdominal cavity, indicating that the chemotherapy wasn’t working. His doctors explained that there were really no more medical options—he had already tried all of the standard chemotherapies for colon cancer, and none had been successful. His doctors also suggested not applying to clinical trials, since the only ones he would likely be eligible for would be phase I trials, which test for safe dosage amounts, not drug effectiveness, and would make him miserable without any tangible benefit. After much consultation and discussion, Arijit elected to end treatment, opting instead to focus on maintaining quality of life rather than suffering through futile treatments. To that end, he has started home hospice care, with the goal of keeping him as comfortable and engaged as possible.
Sadly, in recent weeks, his health status has depreciated greatly. At the moment, how well he is doing fluctuates from day to day, but on the bright side, he definitely has good days. After a couple of months of being essentially housebound due to some leakage issues from his g-tube, we finally have a solution that works, and Arijit has been able to leave the apartment and enjoy the Phoenix springtime. With the addition of a wheelchair, which will arrive tomorrow, we’re hopeful he’ll be able to get outside even more.
We don’t know how much time he has, but are hoping for the most we can get; it is almost impossible to predict these sorts of things. The point isn’t to count the hours, but to enjoy them. If we asked for a specific time table from the doctors, we’d just end up fixating on how little time Arijit has left, rather than how much time he has. We cannot know or control the amount of time, but we can control how we spend that time, and we refuse to waste it worrying about the unknown. We like to think that we’d live each day with the same gratitude, appreciation, and enthusiasm whether he had was six weeks or six months, so what difference would it make? There are too many things we want to do in the present to bother ourselves with an unknowable future.
Secondly: Yes, Arijit is dying. But to focus on that means you miss out on the vastly more important point: Arijit is not dead yet. If we are totally honest with ourselves, we will all die sometime, but most people do not spend their lives counting down the hours until it’s all over—why should it be any different with Arijit? He is still a vital and vibrant part of this world, and we plan on doing everything in our power to keep him that way for as long as possible. We watch TV together, we read to each other, we enjoy visitors and play games and cuddle with our cat and laugh and listen to music and make bad jokes—just like we did before the cancer. We are going to do as much as we can in the time we have, and we have an entire team of people dedicated to making that possible. This is a very scary time, for sure, but one thing we’ve learned these past two years is that fear is no match for love, and we are so surrounded by love—between our love for each other and the love of our wonderful family and friends—that we find the courage we need.
Arijit has a lot of life left to live, and we are incredibly grateful that we get to share that life with all of you. Thank you for everything.
First off, welcome to all the new visitors we’ve had. After a barrage of press coverage following my Twitter conversation with Aetna CEO Mark Bertolini, we’ve gotten quite a first-timers stopping by here at Stage IV Hope and over at the Poop Strong site and webstore.
I’ve been sharing the news on Twitter and Facebook, but here’s a consolidated version for those of you who’d rather not dig through all the previous posts or don’t use those social media sites:
- Late last week, I managed to find myself (along with many friends and supporters) in the middle of a conservation on Twitter with Aetna’s PR team and CEO. Especially after my friend Jen decided to condense the tweets in an easy-to-read fashion on Storify, the story quickly started to go viral.
- Somehow, the final outcome was that Mr. Bertolini admitted the current healthcare system is broken, he’s committed to fixing it, and he directed the company to step in and take care of the more than $118,000 in bills I’d accrued.
- Soon after, I made the front page of the Arizona Republic (click to enlarge):
Sure, the Olympics and bath salts are a bigger deal, but I still made page A1.
- Then, fellow survivor, the truly inspirational and courageous Xeni Jardin, caught wind of my story. She’d mentioned my cancer lemonade stand approach before, but this was a chance to spend more than an hour talking with someone whose really been amazing in publicly fighting breast cancer over the past few months. Also, BoingBoing! I love BoingBoing! Some audio of the interview should be posted soon, but the write-up gives a nice summary of the entire story (and features Jen’s original Storify). It was great discussing my experiences with Xeni, in the larger context of the need for systemic change. As she writes:
It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn’t in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can’t afford medical treatment. It really is that simple.
- Meanwhile, the Washington Post noticed. And I got a write-up in their blog Wonkblog. The very same blog that I share posts from regularly. Never did I expect I’d be sharing a link to a post about me. Hmm, maybe I’ll quote myself:
Guha was estastic with the result. At the same time though, his own experience has left him frustrated with the American health care system. As Guha sees it, he’s a well-connected guy who has access to resources, and got a lucky break. “Those who don’t engage in a Twitter war with Aetna’s CEO might not be so lucky,” he says.
“It’s great this all worked out,” he says. “The bigger issue is that, it’s so absurd that I should have to be doing this. It speaks volumes to how broken our health care system is.”
- And then today, NPR got involved. Their health blog, Shots, had a piece about the WaPo piece. I wasn’t interviewed, but Aetna did chime in with a couple words about my situation:
We were able to connect with Mr. Guha through our social media channels and heard his concerns. Although he reached the limits of his plan, Aetna care managers have continued to provide support and we have worked to develop a solution. As a result, we will be able to cover Mr. Guha’s medical costs through the end of the plan year. It’s important to note that the school’s health plan for next year has significantly higher plan maximums.
While we are pleased to have found a solution for Mr. Guha, we recognize that there is much more work to be done to fix the problems in our health care system. We are committed to reforms that make the system work better for everyone.
And I think that brings us up to speed. It’s been a crazy few days out here in Phoenix…
Also, please remember that if you want to Poop Strong web 2.0 style, follow us on Twitter and like us on Facebook.
In celebration of our recent, still-unbelievable success, the two-person team that is Poop Strong Order Fulfillment is taking a break! We just requested another run of merchandise, and orders will begin shipping again in late August.
In the meantime, if something you want sells out, please send an email to arijit@poopstrong.org with the item description and size; if we get enough interest, we’ll do another printing and email you when the item becomes available.
Also, just to reiterate, now that Aetna has agreed to cover my >$118,000 in bills I’d accrued since reaching the $300,000 lifetime cap on my insurance, ALL PROCEEDS raised through merchandise sales (beyond our costs of production, mailing, and the like) will go to benefit three very worthy charitable organizations: the University of Arizona Cancer Center’s Patient Assistance Fund, The Wellness Community – Arizona, and the Colon Cancer Alliance. These three organizations provide close to the full spectrum of cancer care services, from treatment and financial assistance to support and survivorship to awareness, advocacy, and education. Given how many people we’ve reached through the Poop Strong site, I feel the least I can do with the platform I have is to help out others in a similar situation but without the amazing network of support I’ve had.
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.
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.
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.
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.”
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.
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: http://www.cc.nih.gov/drd/rfa/video.html.
(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.
Stage IV Hope 