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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.

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10 Comments

Leave a Comment
  1. EJ Presley / Mar 12 2013 9:56 AM

    Thank you. You have helped me to laugh snd to cry after my own diagnosis when I was, according to doctors, too young to have colon cancer at the age of 43. I will keep positive and poopstrong. You have made a difference in my life. I just wanted you to know.

  2. libber48 / Mar 12 2013 3:42 PM

    thank you for the note, i have been thinking of Arijit lately, and happy to hear something. all i can say is many blessings. *Kristine*

    “We do not inherit the land from our ancestors, we borrow it from our children.” Native American Proverb

  3. Sarah / Mar 13 2013 8:24 AM

    Thank you for this. Holding you in my heart, both of you. Sarah, (anal cancer patient) correspondent from summer re: your wonderful twitter controntation with Aetna CEO.

  4. meromusings / Mar 15 2013 11:39 PM

    I wish Arijit all the best :)

  5. Amit Indap (@aindap) / Mar 18 2013 6:44 PM

    Arijit, enjoy the spring in the desert. Its my favorite time of the year.

  6. LBB Friend / Mar 22 2013 2:02 PM

    Best wishes for this next journey, Arijit. Thanks for making this world better.

  7. thechemobabe / Mar 26 2013 8:51 AM

    Arijit & family,

    Please accept my loving wishes for comfort and connection during this precious time. Thank you Arijit for sharing your story with us.

    With love and gratitude,
    Lani

Trackbacks

  1. Cancer Kick – A health update from Arijit "Poop Strong," cancer blogger and awesome guy
  2. A health update from Arijit "Poop Strong," cancer blogger and awesome guy | Vette Voice
  3. Arijit Guha, student who battled Aetna over cancer coverage, dies

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