ianunderhill vs. cancer (RIP Nick)

wordsmythe wrote:
ianunderhill wrote:

But I'd need a human enemy who needs his head exploded. You don't test this sort of thing on innocents. Or at least I don't, anyway.

I hear what you're saying. We need a lawyer to create a shell corporation to cover the liability first.

*ponder* Can you explode the head of a shell corporation?

Hypatian wrote:
wordsmythe wrote:
ianunderhill wrote:

But I'd need a human enemy who needs his head exploded. You don't test this sort of thing on innocents. Or at least I don't, anyway.

I hear what you're saying. We need a lawyer to create a shell corporation to cover the liability first.

*ponder* Can you explode the head of a shell corporation?

You could try, but their insurance would probably step in to settle before it actually impacted the head.

ianunderhill wrote:

I just came back from a fruitless trip to get pathology slides from the one hospital so the doctor doing the consult at the other hospital can have them for tomorrow's appointment; turns out they won't have them ready until Friday, despite the fact that the request went in Tuesday afternoon. Then on calling hospital #2, I got told we're keeping the appointment for tomorrow. Which is great because I want to keep moving on this to help me stay alive and all, but rotten because it means an additional round of fetching slides at one place and getting them to the other. I'm not in bike-worthy shape, so this is a real pain inmate ass - it means either lots of walking and public transit with transfers, or coordinating things with a car-owning friend who's willing to drive me around, park and wait for an untold amount of time, and then do the same for the other place, then get me home again, all during the course of a weekday because of office hours and with ludicrous parking expenses to boot. Cabs aren't really an option for this sort of thing because...well, everything mentioned, unless I take multiple cabs, which means multiple fares plus tips and me waiting in between.

Seriously, shoot me an email. Erik at this domain.

I just came back from a fruitless trip to get pathology slides from the one hospital so the doctor doing the consult at the other hospital can have them for tomorrow's appointment; turns out they won't have them ready until Friday, despite the fact that the request went in Tuesday afternoon. Then on calling hospital #2, I got told we're keeping the appointment for tomorrow. Which is great because I want to keep moving on this to help me stay alive and all, but rotten because it means an additional round of fetching slides at one place and getting them to the other. I'm not in bike-worthy shape, so this is a real pain in my ass - it means either lots of walking and public transit with transfers, or coordinating things with a car-owning friend who's willing to drive me around, park and wait for an untold amount of time, and then do the same for the other place, then get me home again, all during the course of a weekday because of office hours and with ludicrous parking expenses to boot. Cabs aren't really an option for this sort of thing because...well, everything mentioned, unless I take multiple cabs, which means multiple fares plus tips and me waiting in between.

So all that said, I'm delighted to get back to the thread and find humor waiting me. It's something I needed, and once again, the community comes through, deliberately or no, and with me barely lifting a finger. Thanks for being great, everyone.

I may do that depending upon when the slides become available. I have a few friends who teach post-secondary classes, so there are weekdays I can get one of 'me to help, but it really comes down to what happens in reality.

Thanks for not going after the "inmate ass" typo, by the way.

ianunderhill wrote:

Thanks for not going after the "inmate ass" typo, by the way.

I imagine you have all sorts of new notions about pain on that end of your alimentary canal.

Hey ianunderhill,

I recently read about a site/webapp thing that is used to help coordinate care and wanted to share it with you as it may help you with things like this.

http://www.carecalendar.org/
http://www.lotsahelpinghands.com/
http://supportplanner.caringbridge.org/
https://www.carepages.com/

I hope this helps you. I'm rooting for you.

Thanks Edwin! I'll check those out for sure.

Thinking of you today Ian. That's a lot to take in for one day. Hope you hear quickly from the doc and that you get quick relief for your distension.

Ian, Truly sorry to hear about your ordeal. I work at a hospital full of doctors who do research on this kind of disease, so even though I may not be able to do anything for your directly, let me know if you need advice or explanations or anything else I can do to bug the doctors here and I'll be happy to do so for you.

Thanks Rahmen and Fredrik_S. Greatly appreciated.

Do your best not to focus on the news! Focus on continuing to be awesome! We're all in your corner.

Best of luck, good ol' Ian!

Hey Ian,
Recently got back from a month off, glad to see you're still in good spirits and getting tons of support, but sorry to read about the ordeals you've been going through. Hope all goes well with the specialists - I'm sure the uncertainty of it all must be really tough.

ianunderhill wrote:

my abdominal distension is definitely happening again.

At first I thought "maybe it's not distension, maybe it's an infection." That failed to make me view things more positively, so I thought "maybe an alien laid eggs inside him while he was under operation." That was a little bit better.

"Maybe he's just getting fat."

I mean, I wasn't going to say anything. And it's understandable, what with you not being able to ride around all the time anymore.

Heh, see, that's funny, because the original distension incident happened a month or so after I moved up north, which reduced my commute to twelve minutes each way. With the whole "benefits of aerobic exertion don't start happening until after about twenty minutes" thing, I'd initially thought I'd gained a little weight. The rate of the increase over a few more days suggested otherwise. This has made for a good laugh with hospital staff whenever I've been asked to recount the long version of my story.

Regrettably, though it isn't increasing as rapidly, the current belly big-ness has been identified as ascites-induced distension by multiple doctors. I'm going to need another paracentesis for sure. Hopefully it won't reoccur at the same rate as before now that the big tumor is out, because going weekly sucks. I don't mind the procedure itself - it's relatively painless and I know a few of the ultrasound techs by now, so we get to have a little chat while the liters are drawn off - but since it's tough to get one set as an outpatient procedure in a timely manner, going in through emergency and usually being in for an overnight is a real disruption to trying to live a normal life.

Ian, I haven't posted before - but I want you to know that I am thinking of you and sending postitive thoughts your way.

Thanks, SallyNasty. I'm sorry my Syndicate disc developed that crack in it before we got to do some co-op. Not only is it a good time, but I used to heal everyone else in StanliTech so much it makes for easy jokes in the face of all this.

Thanks also to tuffalobuffalo, ZaneRockfist, and Dysplastic for their respective kind words. The uncertainty doesn't bother me so much, it's more the impatience and extra errands...though it's worth noting that the latter are largely caused by HIPPA requirements and I totally get those, even though I don't personally give a damn who knows about my cancer. Still, the fact that it's 2012 and there's no medical institution standard encryption-enabled HIPPA-compliant means of sending files of CT scans and the like over the Internet really pisses me off.

On the lightest note all week, I got a call from a buddy from the old bike shop this afternoon. Not only did a bunch of the folks there raise money for me, but he followed that story with, "So yeah, cancer. Can I have your bike?" There's something really comforting about being reminded that you've got friends who know you well enough to make just the right joke for the circumstances, even if it's been months since you last spoke. And of course there's nothing like a good laugh after a slightly troublesome week.

I've shared part of your story around work with a few people and I want you to know they all think you rock. Despite your last appointment only being okay I have confidence that you will continue to beat the sh*t out of cancer.

Yesterday's appointment went okay. The new doc (actually a surgeon) said he doesn't think regular chemo is going to do anything to increase my survival rate and thinks that the aforementioned surgical procedure (EDIT (serious autocorrect typo):"debulking") plus the catheter-in-the-abdomen chemo is the only way to go should I want a shot at living. Turns out he would also rather have me worked on by someone even more experienced with it up in Milwaukee, WI. Where it gets tricky is that Illinois Medicaid is apparently garbage outside of Illinois. Good news: this guy is moving down to Chicago and will be practicing at Loyola. Bad news: the doctor I spoke with yesterday wasn't sure how soon. Apparently they're on friendly terms, though, so he's attempting to get hold of him to see if anything can be worked out or if the move down here will be soon enough to help me. If nothing can be worked out, he's willing to do it himself as a fall-back so I don't just die slowly and painfully.

The other thing that's happened: my abdominal distension is definitely happening again. It's likely that it's been going on very slowly since after surgery, but between the drains they had in me for the six days following surgery and (again) it happening slowly, it hasn't become visibly evident until the past several days. It's not painful yet, but in the best interests of it not hurting anything inside me (such as my reconnected colon or the internally, facing healing bits of my incision, I'm likely going to go back to the ER of hospital #1 on Sunday so they can set me up for another drain and subsequent discharge for Monday. I've tried booking as outpatient but once again, they want radiology to do it in conjunction with an ultrasound, and there just isn't anything available soon enough to make me feel like we're still on the safe side.

Fun stuff.

Thanks Gimpy! I only hope I can manage to keep up a good fight and continue to make for a damned good story. If only this were the 1980s but with today's medical technology - the proceeds from the sale of the TV movie rights would really help a guy out.

Sounds like it's going as expected. I mean, if everything was better now, there'd be no follow-on. So a few bumps in the road, eh, that's gonna happen. You'll fly past them.

I'd see if your onco can ask the other surgeon to come down and do the job on a visit. That happens. Push a bit and see.

You set for games and such? Kindle books? ...Kindle?

Your new doc seems blunt and to the point. I take that as positive and that he is knowledgeable. Are you getting any second opinions?
I guess the one he wants you to go to, could be seen as one. Depending if he is available.

Glad to hear you've a bunch of good friends out there

Sorry to hear of the setbacks Ian. I don't post much in this thread because I can never think of things to say beyond sending my best wishes your way but that continues to be what I'm doing. You will beat this thing, if for no other reason than your own good spirits and the collective will of Goodjerdom!

You were one of the big participants in my Extra Life stream on the weekend and you were instrumental in making that a blast for me. I missed the part where your Syndicate disc was cracked. I'm not kidding, PM me your address and I'll buy you another copy and have it shipped to you. I live in Canada but I can buy from Amazon.com if I'm shipping to a US address. I haven't played Syndicate with the StanliTech posse in far too long and you are a key board member. We are behind on our stock compliance and more meetings must happen soon.

Thanks for all the kind words, Parallax. I completely understand the whole "not knowing what to say" business, but being on this end of things, I've learned a little bit goes a long way. A new copy of Syndicate is going to go even further! I miss StanliTech, too. I'm not really one for multiplayer FPS action, but I love it in that game. Maybe it's something about people coming together under crazy circumstances. Who knows.

Oh, and I was more than happy to do what I could during your ExtraLife streaming event. Dark Souls isn't just a favorite game of mine, but it's one of those things I love watching people react to/hearing about people's experiences with it. I've spouted about/gotten into arguments about other aspects of it across multiple threads on GWJ, but when you couple a first-time experience in the game with a charity fundraiser that benefits kids possibly doing worse than me...well, that's a big deal. Happy to help where I could, though of course, had I a gaming PC, I would've been helping more directly. Once again, though, fun event. Thanks for letting me play my little part.

ian, I just wanted to chime in to say that I'm checking in with you here nearly every day, though haven't posted much. Just know that I'm right here sending you all the good vibes I can. Vinnie, too! We'll all get through this together, just like goodjers do. Go with Robear's advice on pushing for the doc to do the procedure on a visit - the other doc may benefit from observing. With you all the way!

So I've quietly been back in the hospital the past few days - the distension wound up being painful enough again to warrant coming back to get another tap. They performed a paracentesis yesterday and took off 5 liters - way less than before, and after almost five weeks, that's way more manageable. They kept me overnight as my hemoglobin and iron levels were a hair lower (and I mean around 0.1 less) than what they consider good, and had given me blood late afternoon; as I'd never been given blood before, it was important to keep me for observation and make sure there were no issues. I'm presently waiting to get released, which should happen by mid-afternoon with any luck.

I also got to talk with my oncologist yesterday. What she and the guy at the other two doctors (that is, the one at the other hospital here and the one up in Milwaukee, WI) have worked out after further examination of my case and further conversation, the plan is actually going to be to try regular systemic chemo first after all, then look at the aforementioned surgery and other type of chemo after that. I'll know more by the end of the week, but if this winds up being the ultimate plan, we'd start things next week. I'm nervous to find out what side effects the chemo will have on me, but I'm feeling good that I've got doctors from multiple hospitals working on my case and that there's been a lot of time and effort devoted to figuring out the right plan. In other words, I feel confident with the pending plan, I'm just a bit nervous about the short-term implications. My primary oncologist here has been super supportive, though, and has made clear that the big reason they've been working on things like they have is because I'm only 30 and they want me to see as much life as I can.

On the more frivolously plus side: my benefit is Sunday! Latest additions to the prize pool: SRAM/Zipp have donated a pair of 404 Firecrest carbon clincher wheels (which are awesome and about $2700 retail), while BMC have donated a signed team jersey. These are so amazing that the organizers have put them and three other items into a "silent auction" category to augment the normal raffle prizes. I'm excited not only to see what these things go for and what the return will be, but also to see who goes home with what. There isn't anything in the entire prize package pool that's valued at under $100, so everyone who wins something is more than going to get their money's worth. I'm stoked to see people leaving the venue at the end of the night with huge smiles on their faces and with memories of a great time.

Sounds like you approve of the change in plan even though it may be tough. Hang in there! Those prizes sure are rad.

Ian - I'm sure all the physical activity you had before all of this started will give you the best chance of working through the tough stuff. If you're (understandably) nervous about the chemo, it might be a good time to react out to the support groups within the hospital as there are probably folks who are ahead of you on the path who can share their experiences.

Just remember the cancer isn't going to like it either

Have a good time at the benefit. Hope it goes well and it says a lot about the community of friends you already have that it's happening in the first place.

Ian, I'm so glad you've got a lot of support both from medical staff and your friends (that benefit sounds really, really great). I hope everything goes well and they can find the best treatment plan possible so you'll be with us a good long time.

I haven't written here as much as perhaps I should, even though I know encouragement and support is important - but I do think about you quite often and hope that you are getting on OK.