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.
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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.
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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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Apologies for the long delay in posting to the blog. Life has been busy as of late. Very busy. And mostly the busyness has been around the fundraising operation I’ve mentioned before, Poop Strong.
The response we’ve received so far has been nothing short of astounding. Since my last update, we’ve received even more visits to the site, and the purchases and donations keep rolling in. We’ve now had more than 35,000 unique visitors to the site. And of those, more than 1,200 have made donations or purchases. Absolutely amazing! In my wildest dreams, I never expected that things would catch fire like this.
I spent the past week stuffing envelopes like a madman — more than 300 in all. And then it was more than three hours at the post office getting everything sent out. A bit exhausting, no doubt, but it was definitely worth it. Seeing people share photos of their Poop Strong merchandise on Facebook and Twitter the last couple of days has been very gratifying. (And I’d be lying if I didn’t mention that I get a huge kick out of seeing folks I don’t even know wearing “Arijit Loves You” t-shirts. But it’s true, I absolutely love everyone who’s extended a helping hand and given me support in my time of need. All of you are just wonderful.)
I was telling a dear friend of mine recently about the stunning response we’ve had so far to the Poop Strong campaign and she captured my feelings better than I ever could:
I would give anything to have had this not happen to you. But I am also so glad that learning about what you have gone through has just brought out all of the most beautiful parts of so many people.
While I’d generally call myself an optimist (after all, it’d be a bit of cognitive dissonance to dedicate myself to the cause of sustainability if I didn’t believe achieving a sustainable world was actually possible), I can most definitely be a cynic at times. But this experience has completely reaffirmed my faith in humanity. When people I’ve never met and who have no connection to me whatsoever contribute hundreds of dollars, it’s hard not to be totally blown away by just how kind and generous people can be. Meanwhile, friends of mine from college and grad school — completely on their own, mind you, without even the slightest prodding on my part — have put together fundraisers in three different cities (New York, DC, and Chicago) that have raised thousands of dollars. Friends and strangers alike have shown so much more compassion and graciousness than I ever thought was possible. I’ve said it before and I’ll keep on saying it: I’m so grateful for all of it.
And now for the most amazing bit of info: we’ve raised more than $80,000 through the site. Even after accounting for the processing fees charged by PayPal, as well as the cost of manufacturing/producing the various wares we’re selling on the site, there’s still some $70,000 that is going to be applied to my future treatment costs. Meanwhile, the latest numbers I got from the University of Arizona Cancer Center show almost $40,000 in the patient assistance fund account established for me. Yes, that’s right: $110,000 raised already.
On the payments side of the balance sheet, I’ve now accrued some $49,500 in billable medical expenses since Aetna stopped covering my healthcare costs. (I should note that some of these bills haven’t yet come our way and that when they do, it’s possible that the cancer center will cut us some semblance of a discount.) And coming up on Wednesday afternoon, I’ll have another procedure (more details on that later) that is expected to run somewhere in the neighborhood of $30,000 — and that’s at the discounted rate. With more than three months to go before I’m insured again, and the likely possibility of some additional drugs being added to my treatment regimen (anti-EGFs, should you be curious, that usually cost around $15k/month), it now seems that the estimates we initially had of $100,000 in treatment costs was significantly lower than what I’ll actually need. Right now, assuming no more further surprises, I’d say it’s likely we’ll need something around $150,000 or perhaps a bit more.
It sounds like a lot, but we’ve already raised more than $110,000 so far. Getting another $40-50,000 is more than do-able. I have no doubt in my mind that the amazing community I have around me can continue to spread the word and bring more people into the Poop Strong fold.
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Just another reminder that you can now follow Poop Strong on Facebook and Twitter, where I offer briefer, but more frequent updates, as well as sharing news and other tidbits relating to colon cancer and other related issues.
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The internet can work in wonderful ways some times. The story of my on-going fight to avoid medical bankruptcy has hit the media, hopefully not just bringing more visitors to the PoopStrong.org site, but also bringing some much-needed attention to the inequities in health care in this country.
Inside Higher Ed interviewed me earlier this week, and the story is now up on their site. Check it out.
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As I mentioned at the end of my most recent post last month, I expected to soon run out of my insurance benefit. Well, it happened with my last treatment in January. In less than one year, the costs of colon cancer treatment (all the stuff you’ve been reading about here on the blog: two surgeries, many rounds of chemo, a handful of ER visits and hospitalizations, as well as the cost of colostomy supplies) used up $300,000 in insurance reimbursements. Meanwhile, should my current treatment regimen continue through August (when I will fortunately have insurance coverage once again, either due to the Pre-Existing Condition Insurance Plan offered through the federal government, or through a newly negotiated student health care plan offered through ASU), there’s the possibility that I could be on the hook for upwards of $100,000 or even more in medical expenses. (The hope is that some of those charges will be written off, the pharma companies will offer discounted drugs, and that we’ll also be billed at a lower rate than Aetna was. Should that be the case, the cost of care — i.e., the amount of potential debt we could accrue — will be less and that come August, we’d be donating a nice chunk of change to other worthy organizations that deal with cancer treatment, support, and survivorship.)
So, as many of you already know by now, I’m turning to all of you and the rest of the internet world to come to my assistance. On Wednesday afternoon, we went live with my new fundraising website: www.poopstrong.org. Over at the Poop Strong site, you can find information on a variety of ways to provide assistance — ranging from buying t-shirts and bracelets and other goodies, to contributing to the University of Arizona Cancer Center’s Patient Assistance Fund.
I started off by sharing news of the site on Facebook and figured I’d then get to this blog and email some folks. Yet before I even had a chance to share here or via email, Facebook sharing alone seemed to send the website viral in just a few days. In less than a week, we’ve gotten more than 20,000 visitors to the site. And even more exciting is that some 500+ people have made donations or bought items from the store. Just a few days into things — with seemingly everyone I’ve ever met in my entire life sharing the Poop Strong site on Facebook, Twitter, and whatever other social media sites there are out there — we’ve already raised thousands of dollars. Getting to $100k will still be a long process, no doubt, but it’s so incredibly heartening to see so many folks rally behind me. I’ve been absolutely blown away by all the support. I already knew I had an amazing group of friends and family around me, but what’s amazed me is how willing people I haven’t talked to in years have been to donate and share news of the site.
While being diagnosed with late stage colon cancer and then having to deal with the possibility of bankruptcy sure aren’t the most enjoyable things in the world to be concerned with, this outpouring of kindness and generosity has reminded me yet again how lucky and privileged I truly am. Those of you who have doubted it should reconsider: the world is filled with many, many kind and generous people.
I suppose that my story is somewhat compelling; no matter where you fall on the political spectrum or how you feel about healthcare reform there’s something attention-grabbing about the story of someone who’s done nothing wrong, except to have the misfortune of being diagnosed with stage IV colon cancer a good 40 years before the average age of diagnosis. Nevertheless, there are plenty of other people in the world who’ve experienced misfortune, as well. So the fact that so many people, including many that I’ve never even met, are willing to help me out during this time of need makes me incredibly grateful.
But like I said, none of this would be possible if I weren’t so lucky to know so many wonderful, talented and generous people. The website, for instance, has been in the works for quite some time and I’ve gotten tons of assistance from a variety of friends. To be honest, it’s been my friends who’ve done virtually all the work; I’ve simply made requests and written text, while they’ve done the rest. If I didn’t happen to know an absolutely expert web developer (thanks, Jesse Kriss!) and a number of really fantastic artists and designers (thanks, Ayrel Clark, Doug Mack, and Chinn Wang!), I’m certain that this web-based fundraising effort wouldn’t be nearly where it is.
So thanks again to everyone. This past week has been wild and words cannot begin to capture just how thankful and appreciative I am.
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Lastly, for those of you on Facebook you can “Like” the Poop Strong page by clicking here. And we’ve now got a Twitter account for Poop Strong that you can follow here. Keep spreading the word!
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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.
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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.
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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.
Greetings, friends. It’s been quite some time since I’ve checked in and given an update. And since I’ve been ignoring far too many phone calls, emails, and text messages checking in on me, it’s probably about time to let everyone know just how I’m holding up.
Now more than two months removed from surgery, I’m back on chemo. I initially received a two-week reprieve; when we went down to Tucson seven weeks removed from surgery expecting to get started up on my new chemo treatment, my oncologist decided to give me a couple more weeks to recover and gain my strength. I was clutching onto a vomit bucket at the time, so I certainly didn’t complain that I was getting a few more weeks to feel better. And then following a few more weeks of recovery — and the hope that I’d be able to regain a few more pounds after having lost some 20% of my body weight following surgery — it was back to chemo.
This time, I’m on a different chemotherapy regimen than I was on during the spring and summer. Back then, I was on a treatment called XELOX, which is essentially the oral near-equivalent of FOLFOX, the most common treatment for advanced metastatic colon cancer. We’d travel down to Tucson every three weeks and I’d get an IV infusion for a few hours, then we’d return to Phoenix where I’d take five pills a day for the next two weeks. This time around, my oncologist wanted to try a different treatment (a pretty common strategy when it comes to battling a feisty opponent like colon cancer), so I’m now on something called FOLFIRI. It shares some of the drugs in common with my previous treatment, but also has some different ones. This, of course, means that the side effects are a whole different beast, as well. With FOLFIRI, I receive treatment every two weeks and there’s no oral element. Instead, I have an afternoon-long infusion and then get sent home with an electronic chemo pump that delivers the remaining chemo drugs to me over a 46-hour period.
I’ve now been through two rounds of treatment and I’m doing my best to hang in there. It can definitely be tough at times. The first two days, when I have the pump attached to me, are pretty much non-stop nausea with an unpleasant amount of dry-heaving, despite the five different anti-nausea drugs I’m now on. At least I was able to eat some food during the second round, something I essentially was unable to do the first time. Still, I end up being pretty sapped of energy and much will to do anything for about five days, while some of the side effects linger on for a bit longer. I’ve been struggling to put on any weight since surgery and the nausea, vomiting, weakness, etc. really don’t help with that; instead, I’m frighteningly close to barely weighing triple-digits. Obviously, it can definitely be frustrating. Going through this every two weeks for the next six months doesn’t excite me very much, to say the least, but I’m more than willing to put myself through all this in the hopes that things will eventually get better.
All that said, I don’t want to give the impression that things are too bad. After all, I’m still getting by. Between my first two treatments, I felt well enough to travel and we saw our wonderful families and dear friends, attended a lovely wedding (congrats, Rob and Megan!), and enjoyed autumn. Moreover, I’ve been lucky enough to avoid some of the unpleasant side effects of treatment such as hair loss, mouth sores, and the like. And I’m certainly quite happy to not be dealing with the side effects that the XELOX treatment had, such as extreme sensitivity to cold and nearly-debilitating hand and foot pain. There are ups-and-downs with any treatment and for whatever crap I’ve had to deal with, there’s plenty more that I’ve been lucky to avoid.
So, all told, as dispiriting as things can be at time, my spirits are still high. Heather takes amazing care of me and is by my side during the worst times, and the support of all of you from afar helps get me through, too. And during the best of times, life is still able to continue at something vaguely approaching normal. Now that a week has passed since my latest chemo round, I’m feeling much better and we’re both quite excited to head to Columbus next week to spend time with my family for Thanksgiving. Great people, great food, and still so much to be thankful for.
After a series of hospitalizations, I’ve finally returned to Phoenix and am on the road to recovery. The past month has been grueling, to say the least, but it’s nice to be in the comfort of home.
Despite the interruptions, overall things have are good. The surgery was generally successful and while we obviously don’t yet know the long-term impacts of it, things went quite well.
As I’d mentioned earlier, the first step of the procedure was a diagnostic laparoscopic procedure, which was intended to confirm that there was no extra-abdominal spread of the disease. (In essence, if things have metastasized beyond the abdominal cavity, then HIPEC is no longer a good option.) The diagnostic also provided a detailed accounting of just where the tumors were and how much of my abdominal region was affected. The CT and PET scans don’t do a good job of imaging these smaller tumors, so until the surgeon went in laparoscopically, the only indication we had of the extent to which my abdomen was infested with tumors was from what the surgeon who conducted the colon resection in February saw.
On the first count, the surgeon determined that things were still contained to the abdominal cavity. On the second count, the diagnostic laparoscopic procedure showed that the spread of the tumors throughout my abdomen was rather far-reaching. Before deciding whether or not to go forth with the cytoreductive surgery and heated chemo treatment, surgeons will assess the spread of cancer throughout the peritoneum using something called the Peritoneal Cancer Index (PCI). Each patient is scored on the PCI, which ranges from a low of 0 (no tumors) to a high of 39. Anything above 20 is considered to be “extensive carcinomatosis,” and most surgeons who undertake the HIPEC procedure use a cut-off somewhere in the mid-to-high 20s to determine patients who are or are not appropriate for the procedure. I scored in the mid-20s, keeping me on the right side of the cut-off and the surgeon decided to go ahead with the procedure.
Given the extent of the disease, the procedure went as well as could be hoped. I spent approximately 12 hours in surgery — a bit longer than we had initially expected, but it took some time to try to cut out as much of the diseased peritoneum as possible. The surgeon estimated he’d been able to remove some 60-70% of all the visible tumors, and essentially removed the entirety of my peritoneum.
The goal, of course, is complete cytoreduction — that is, complete surgical removal of tumorous tissue. While this wasn’t possible in my case, what he left were the tumors that, if removed, would’ve entailed removing various portions of organs or other material that would have significantly reduced my quality of life. This was something we had discussed with him during the pre-operative consultation; while I want to receive very aggressive treatment, the goal is to make sure that the procedures used to extend my life do not make life less enjoyable. It can be a somewhat imprecise trade-off, but I was comfortable leaving my surgeon to decide when he was operating on me what was worth doing and what wasn’t. So, in the end, I lost my gallbladder, lost a small portion of my diaphragm, and my peritoneum, but kept most all else (including my spleen, which, going into surgery, I’d expected would also be removed).
After such a long, intensive procedure, my in-hospital recovery went surprisingly quickly. I spent less than a day in the ICU (where one of the nurses told me I looked far too healthy to be), and then headed into the general ward, where I stayed for a little more than one week. It was a shorter stay than expected and was surprisingly pleasant. I had a room to myself, had my parents, brother, sister-in-law, and, of course, Heather, and had an excellent team of doctors and nurses constantly checking up on me. (Let me take just a moment to recognize the excellent nursing staff of University Medical Center. They were consistently wonderful.)
Strangely, I felt less pain following this procedure than I did following my much smaller surgery in February. (February: 2-inch incision, August: 12-inch incision.) Indeed, I was rarely even requesting pain-killers by the end of my initial hospitalization. So, overall, the initial stages of recovery were quite positive.
Upon discharge, I ran into a couple issues. First, I had to be re-admitted because I was running fevers and having some abdominal pain and vomiting. Turns out I had a staph infection, a not-at-all surprising outcome when you’ve got a giant incision and you’re spending time around sick people. It was nothing that some antibiotics couldn’t treat. Then after returning to Phoenix for a second time, I started having issues with my GI tract once more and the surgeon was concerned that I might have a bowel obstruction. It turns out that it was more an issue of dehydration and the fact that my bowels, after being pushed around, poked, prodded, and heated up, were still getting back to normal function. So with that out of the way, we returned from Tucson to Phoenix once more.
I’ve now been back for a week and a half and I’m doing much better. It’ll take a while for my energy to completely return and to regain the 15 or so pounds I lost, as well as for my GI tract to completely return to normal. At the moment, I still get cramps whenever I eat and my stomach capacity just doesn’t seem to be the same as it was before, but these are things that should hopefully change with time.
The next step in the recovery comes tomorrow, as I go back down to Tucson to get my staples (37 in total) removed from my incision site, and also meet with my oncologist about my future treatment plan. As fun as it’s been to have a stomach glistening with shiny metal staples, I’ll be quite glad to see them removed.
Well, here we are — just about 12 hours before I undergo what sounds to most people to be a pretty harrowing procedure. Over the course of as many as 10 hours, my surgeon will cut down the length of my abdomen, methodically remove as much of the diseased peritoneum as possible — as well as any other diseased tissue or non-essential organs as can be removed without significantly dampening my quality of life. Then my abdominal cavity will be filled with a heated chemo solution that will circulate through my abdomen for up to two hours. Once drained, the doctors will stich me back up and I’ll be ready to begin a short stay in the ICU, followed by as many as two weeks in the hospital’s general ward.
Hyperthermic Intraperitoneal Chemotherapy it’s called. HIPEC, for short. Though it’s most definitely a maximally invasive procedure — one that will require some 6-8 weeks of recovery once I’m discharged — it represents the most aggressive treatment available to me. There is some amount of debate within the oncology community about HIPEC, but after a few months of researching the procedure and its results, along with consultation with my medical team and close family and friends, we decided that I was as ideal a case as there can be for HIPEC. The procedure gives me what I believe to be my best chance at long-term survival and all I can do now is be strong and hope that the short-term costs will be outweighed by the long-term benefits.
Poop strong, my friends. Poop strong.
UPDATE: Here‘s a news story featuring my surgeon describing the procedure.
