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10 January 2012 / stageivhope

Thankful, Thankful, Thankful

To say that 2011 has been a rough year is a bit of an understatement. As I’ve said before, the idea of being diagnosed with Stage IV colon cancer a mere two months after turning 30 isn’t really what I was expecting. But two surgeries and two chemotherapy regimens later, here we are.

Throughout this entire journey, I’ve tried to stay as hopeful, optimistic and positive as possible and these past few months have been a very good opportunity to remind myself of the importance of that attitude. Starting a new regimen of chemo has been pretty difficult at times, but fortunately these past couple of months I’ve been able to spend time with so many of the people that are important in my life. It’s been a true blessing.

We were able to travel out to Columbus for an absolutely wonderful Thanksgiving, where I got to relax, spend time with family and many friends from home, and eats lots and lots of delicious food. Afterwards, upon returning to Phoenix, Heather totally caught me off-guard and successfully planned a surprise party for my 31st birthday. I’ve never really cared to celebrate birthdays in the past, but this year seemed a bit different and it was wonderful to see most all of our Phoenician friends that have been so wonderful to us during this past year. And that was followed by the wonderfulness of a visit from some friends from home, a wonderful trip to Heather’s homeland of western NY for Christmas, and then a New Year’s bash here in Phoenix with twelve friends who were visiting from all corners of the country (and globe). Finally, we got a visit from my parents this past weekend. Really, it’s been like Thanksgiving redux — an opportunity to consider all the wonderful things I have in my life that I should be thankful for. There have been ups and downs in chemo throughout this time, but getting to spend time with the people who matter to me has just reminded me again and again just how lucky I am to have the most amazing group of people cheering me on and supporting me.

***

I’m now six treatments into this latest chemo regimen and things are generally improving, insofar as how I’m dealing with the side effects. That’s not to say that everything is going great — there are still side effects I struggle with. Even with the nausea far more under control than initially (now that the various anti-nausea drugs have been tweaked), it’s certainly not pleasant, nor is the sometimes painful acne or the mouth sores that are a side effect of the meds. Furthermore, there are two somewhat disconcerting long-term trends that seem to be developing: my blood pressure is increasing (one of the side effects of Avastin) and my white blood cell counts are lower than they’ve ever been. Both are still within the range that is acceptable for continuing with my chemo, however, and even if either/both get out of that range, both conditions can be somewhat treated with additional drugs. (Of course, I’d rather not also be taking blood pressure medicine or getting injections of a hormone that stimulates WBC production if I don’t have to.)

Yet despite all of that, I’m still holding up fairly well. Most people on chemotherapy for late-stage colon cancer tend to face far more difficulties with treatment than I have. For the most part, I’m now getting a sense of the how to adapt to this latest chemo regimen. Generally, things are tough for the first 46 hours (when I have the chemo pump attached to me) and get progressively better quite quickly when the pump is disconnected. And while I was first having difficulty eating any food at all those first two days, I’ve now gotten to the point where I can eat three small meals a day. It’s progress. And most importantly, I’m slowly regaining weight. I seem to lose a bit at the beginning of each treatment when my metabolism goes sky high and my food intake drops, but overall there’s a nice long-term trend of slowly regaining the weight I lost post-HIPEC. Really, as far as the post-surgery effects go, it seems that for the most part I’ve almost gotten back to normal. Or rather, the new normal. I still have to take some additional drugs to ensure that everything in my GI tract is working the way it should, but I’m no longer beset with the severe abdominal pain, constant nausea, lack of appetite, problems digesting, and the rest of the issues that beset me for a couple months following last August’s surgery.

***

One last thing to mention, which brings us back to the theme of my amazingly supportive network of family and friends that have helped get me through these trying months. As many of you know, I will soon be kicked off of my health insurance plan. The Aetna student health care plan provided by Arizona State caps the lifetime benefits paid out at $300,000. Well, as it turns out, cancer treatment is expensive and I will be reaching that cap in the next few weeks. At that point, I will be at the mercy of charity care — a combination of what the hospital is willing to write-off or provide at reduced rates, drugs provided by pharmaceutical companies at a free or discounted rates, as well as money I can raise to help offset the costs of treatment — in order to avoid medical bankruptcy.

Luckily, this should be a somewhat temporary situation for me; thanks to the provisions of the Affordable Care Act (i.e., the recently passed health care reform legislation), I will be eligible for a pre-existing condition health care coverage plan through the government. However, to become eligible I’ll first have to be uninsured for six months. Yet between now and then, I’ll still need to undergo treatment and the medical bills will continue to come in. Though it’s hard to predict, we expect that six months of treatment will likely cost anywhere from $100,000 to $150,000. So that’s what we’re hoping to raise.

We will be organizing a number of fundraisers to assist with my medical costs. Those who are not in the Phoenix area or otherwise are unable to assist with local fundraising efforts can assist by buying t-shirts and other fundraising items, bid on online auction items, or give a tax-deductible donation in my name to the University of Arizona Cancer Center’s Patient Assistance Fund.

I’ll be rolling out a website and we’ll be doing a full-scale social media assault soon. Be on the lookout for that, and thanks again to all of you for being there for me. I’m so grateful for you all.

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12 Comments

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  1. Ang / Jan 10 2012 1:54 AM

    So much love, Ari. Love love love. xo!

  2. Eddie / Jan 12 2012 10:58 PM

    Ay yo, when’s that fundraiser? I want to get in on that action.

    • stageivhope / Jan 12 2012 11:05 PM

      We’ll start selling shirts to raise money soon. The website and shirt designs should be ready in a couple weeks, I hope. And a couple months later the online auction should follow, as well as an event of some sort here in PHX. Organizing those will take a bit more time, if only because soliciting high-quality items to auction off will take lots of organizing and lots of time.

  3. hannah / Jan 13 2012 12:02 AM

    Remember when you raised a ridiculous amount of money by offering to shave your hair into various amazing configurations? I’m assuming the whole hair thing is out at the moment, but can I go to sleep tonight assured that something equally awesome is going to happen here? And I’m speaking here both to Mr. Goobalooba and to everyone who loves him. Let’s make this happen, yo!

  4. Jill / Jan 17 2012 5:12 PM

    I vote for fundraisers in many cities.

    • stageivhope / Jan 19 2012 10:54 PM

      As Katelyn and the others here in PHX will confirm, organizing a fundraiser is a whole lot of work. Are there folks in other cities who’d be willing to help organize things? I think silent auctions and raffles are probably the easiest and most cost-effective thing to pull off, but the hard part is soliciting goods for the event. If there are folks out there who want to give this a shot, I’m more than in favor.

  5. Jill / Jan 22 2012 8:36 PM

    I belong to a Carleton book club out here. I’ll pick their brains next meeting…

  6. Helen / Feb 16 2012 9:19 AM

    I am seriously excited about your t-shirt. I just ordered one – I found out about it from Carleton on Facebook. I’m a science writer, and poop is pretty much my favorite topic.

  7. Uma / Feb 16 2012 11:39 AM

    I’d like to donate some money to the fund in your name. Can you please let me know the best way of doing it. I’m trying to do it through the fund because workplace has a charity match policy that hopefully I can use if I go through this.
    Is this the link to donate online? And how do I make sure it’s going to you?

    https://www.uafoundation.org/NetCommunity/SSLPage.aspx?pid=321

    • stageivhope / Feb 16 2012 11:35 PM

      Here’s the official word from those at U of A Cancer Center:

      “Here is the link below to donate on-line:

      http://www.umcarizona.org/body.cfm?id=653

      This will take you to the University of Arizona Medical Center Foundation website. On the first page, you’ll select “online donations” it will next take you to a page that does require you create a username and password. When you get to the page “Initiate donation,” under the section “Gift Designations” please select from the drop-down menu: Cancer Center Patient Assistance Fund; then on the next section “Tributes,” under, “Dedicate my gift in,” please select from the drop-down menu: “other” then under “Name/Occasion/Etc” type in Arijit Guha for the name. This will allow the contribution to be ear-marked for him.”

  8. Brandy Rippy Drake / Feb 16 2012 7:26 PM

    Sorry to hear about this Ari. Don’t know if you remember me, was at Carleton the same time as you. Will be thinking of you a lot and hoping for the best. Big hug – Brandy Rippy Drake

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