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1 May 2013 / stageivhope

A Eulogy of Sorts

Arijit hated funerals.  So he’s not having one.  Instead, I threw him a party to celebrate his life, and the lives of everyone who loves him.  He wanted people to get together and tell stories and share happy memories.  He wanted his friends and family to take comfort in one another and enjoy life.  And so we did.

Because he didn’t want a funeral, there would be no eulogies, no public speeches of mourning.  We met up in a ballroom and ate snacks and laughed, because everyone who knows him has a good Arijit tale to tell.

But I cannot shake the fact that someone as special and wonderful as Arijit deserves a eulogy.  He wouldn’t want one—for someone so sure of his own amazingness, he had a very hard time hearing how amazing he really was.  But he should have one.  I want him to have one.

Everyone who reads this blog already knows about Arijit’s grand and glorious achievements, of the ways he was trying to save the world.  Instead of talking about those, I’d rather tell a story of us.  Of the greatest gift that Arijit gave me, the gift that gives me the hope and strength to get through this.

Arijit and I were 24 and 22, respectively, when we first met, and we started dating seven months later.  He was my first real relationship, and I his.  This meant that we both came into the relationship lacking all the experience and skills in dating that most twenty-somethings have developed, which lead to a rocky first few months.  We were terrible at communicating.  We misread signals.  We had sharply differing expectations.  I thought he was selfish.  He thought I was needy.  We were both right.

More than once we each considered calling it quits.  I’d like to say that the reason we never did was because we realized that we had potential and that our problems were those inherent to all new relationships—that with time and openness and honesty we’d learn what the other needed, and how to provide for those needs, and that successful relationships involve giving and taking, but in even measure.  But that’s not the reason.

The real reason is that we were both afraid that we wouldn’t find anyone better.

I realize that this sounds a lot like settling, but, like so many things in life, it’s much more complex than that.

You see, we had each decided, long before we met, that we were weird.  Our interests, quirks, habits, and personalities made us different.  We were proud of who we were, and had no intentions of changing, but we feared that we would never find anyone who would understand, let along appreciate, all those little odd things about us.  Arijit had resigned himself to being alone, and I wasn’t self-assured enough to go after what I wanted.

But here we were, with this person who not only understood and appreciated those things, but actually enjoyed them.  He found it adorable that I sang nonsense songs to myself.  I laughed at his strange sense of humor.  We shared a love of incredibly nerdy pursuits.  He respected my sometimes intense introversion.  I thought he was beautiful.  We just felt so comfortable around each other.  For us, finding someone who actually liked us despite our perceived strangeness, and who wasn’t scared off by all those things about which we were self-conscious, was so rare a thing that we were willing to tolerate a lot of pain and frustration so as not to lose them.

In time, as expected, things improved.  We got better at talking to each other about our concerns.  We became less afraid of articulating what we wanted and needed.  Things weren’t perfect—no relationship ever is—but we learned from our mistakes and did our damnedest to be the best partner we could be, because that’s what the other person deserved.  In short:  We grew up.  And we fell in love.

Looking back on those early months, I can’t help but feel sad for the scared little people we were.  But here’s the thing about love that surprised me, that I didn’t realize until recently:  just how much it changes you.  I can feel sad for those people because love has emboldened me.  I am still the same weird person I was almost eight years ago—perhaps even weirder—but Arijit’s love gave me the strength to recognize that I shouldn’t have to wait around for someone to decide if and when they can love me.  Arijit taught me that, despite my faults and idiosyncrasies, there is someone out there who would love me in spite of, and indeed because of, them.  In those rare moments where I let my mind wander to thoughts of the future, a future that still seems so unreal, I worry that being loved by Arijit has ruined me for all other relationships, because the bar has been set so high.  And then I realize that Arijit wouldn’t want it any other way—that we had worked so long and hard to convince the other of their own self-worth that I would be untrue to Arijit to believe otherwise.

So that is what most amazes me about Arijit:  the transformative power of his love.  There is nothing I can say or write that would truly express the depths of my appreciation for that gift.  Instead, I just loved him back with all my heart, and focused those lessons back on him, and taught him that he was a person worthy of love, too.  And the strength of that love is the reason I am still here today, writing these words, and not completely paralyzed with grief.  This is the best way I know to honor him.

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22 April 2013 / stageivhope

One Month

Today marks one month since Arijit died.

I was not aware of this fact when I was making my plans for today.

I have spent most of the last month not knowing the date.  Arijit died on a Friday, and so that is how I’ve been counting the time:  the first Friday since he died, the second Friday since he died, the Monday after the third Friday since he died.  I’ve been navigating by days, not dates, which is why I didn’t notice that the 22nd had crept up.

I learned today’s date from a reminder email sent at midnight from our shared calendar, about a concert that Arijit wanted to attend tonight.  As his disease progressed, he only added concerts he really and truly wanted to see to the calendar.  This was the last one he added.

I told myself I would go.

And very late last night (or very early this morning), I cried for this date.

I cried because it had already been a month.

I cried because it had only been a month.

I cried because I could still so clearly see his face, and because I knew that my memories of him would eventually grow fuzzier.

I cried because the pain was still so fresh, even after one month, and so how could I hope that things would be different in two months, six months, twelve months, ninety-six months?

I cried for the time we had lost, for all the adventures we will miss.

But at least there was this concert.  He had three concerts on his calender.  I went to the previous two.  I would do the same tonight, for him.

I slept in this morning.  I missed the precise one-month mark, for I had no desire to relive sitting by his side, holding his hand, watching as his breaths grew ever slower until they finally stopped.  I stayed in bed until the cat’s howling for attention finally drove me out.

I had one main job to do today:  to buy more cat food for my howling cat.  I had one secondary job to do today:  to find a dress for Arijit’s celebration.  I did both.

But the fitful sleep and the heat and the exertion tired me, and I returned home exhausted, with a headache.

I contemplated skipping the concert.

But you must go, said a little voice in my head.  It was so important to Arijit.

You need to do this for him.

Are you really going to break your promise?

Arijit loved concerts; don’t deny him this.

It’s true:  Arijit loved concerts.

But he also loved sitting on the couch together, listening to music.  He loved curling up with a good book (or good Internet article) with music playing in the background.  He loved filling the apartment with music.

Most importantly, he loved when I’d take care of myself.  He loved it when I would recognize what I needed, and do that, instead of giving in to self-imposed obligations.

He knew that, of our many shared passions, live music wasn’t one of them.  He knew that I was perfectly happy to sit at home and listen to the stereo than stand in a crowded venue just to hear the same song live.

And he loved me anyway.

So I am no longer going to this concert.

Instead, I have ordered some pizza.  I will plug Arijit’s iPod into our speakers and play the music I am missing live.  I will cuddle with my howling cat (though hopefully he will replace the howls with purrs) and eat my pizza and listen to the songs.  I will probably cry, because I miss him so, and because it is no easier today than it was yesterday or will be tomorrow, and because even my happy moments are tinged with longing and sadness.

But before and after and during those tears, the house will be full of music.  And through that music, the house will be filled with Arijit again.

I can think of no better way to celebrate him.

10 April 2013 / stageivhope

The New Normal, Part II

It has been almost three weeks since Arijit died.

It doesn’t feel like three weeks—it feels like somewhere between an instant and an eternity.  It’s amazing how time can both fly by and stand still.

I don’t know that I’ve fully processed this all yet.  Perhaps I never will.  While I know that he’s gone, I almost half-expect that he’ll be there when I come home, or when I wake up.  I look at photos of him and it feels like he’s still here, like he’s just away for a bit and will come back soon.  My heart and my head are at odds on how to feel and think.

Arijit and I always tried to approach every step of this journey—from his diagnosis through treatment, and finally to the end—with a rational eye.  We are academic types, and we take comfort in knowledge.  We sought to control our fears though understanding them.  We created order from chaos, and when we couldn’t, we embraced that chaos as the natural order of life.  We stopped worrying about the unknown and focused what we did know, and what we could do.

I’ve tried to rationalize my grief, but I can’t.  I’ve tried to make sense of everything that has happened, but it’s hard.  My ability to think and reason has always been one of my greatest assets, yet it’s failing me right now

And that’s OK.

One of Arijit’s first posts here was entitled “The New Normal,” where he talked about how life changed post-diagnosis and how the key to survival was making sense of those changes and learning how to live with them.  And so with “The New Normal, Part II.”  My life has changed.  I have changed, in ways I haven’t even realized yet.  I can’t go back to the way things used to be; instead, I must work on getting my life back to normal, whatever that may mean now.  I have to take stock of my life and figure out how to carry my old self into my new world.  I need to accept my grief, and the vast set of uncertainties that come with it, and give myself permission to feel whatever it is I feel.  I want to learn to move past surviving and get back to living, with all the joy and hope and wonder and love that Arijit and I shared, and will always share.

And so I am trying to embrace the chaos again, to take shelter in the unknown, and to trust my ability to wade through it.

28 March 2013 / stageivhope

And so we say goodbye.

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.

12 March 2013 / stageivhope

A Health Update

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.

30 July 2012 / stageivhope

The Poop Strong Global Media Blitz

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.

30 July 2012 / stageivhope

A Quick Poop Strong Webstore Update

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.

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