ianunderhill vs. cancer (RIP Nick)

SillyRabbit wrote:

It looks like you're repairing that bike with your mind! I love it. Don't worry about shedding any tears of joy, I'm doing that for you. So happy to see you back at work. Rock on!

Thanks! You've changed the way I'm going to look at that picture forever, by the way. It was actually a new build, which is why there's no saddle clamped on yet; I'd pretty much just gotten it out of the box, put in the seatpost, taken all of the wrapping off everything (lots of zip-tied bits of styro and plastic), gotten the bars on, routed cables, torqued some various bolts to spec; what I'm doing in the photo is closing the quick release on the front wheel after having aired up the tire and installed the wheel. Your version's way more exciting, and it really does look like some special power-y business. I wish it was a better photo, though, if only because that bike's got a satin-y sort of finish to it rather than a gloss or a straight matte, and is really gorgeous in that particular blue and white!

It's been a great weekend. Today I had some friends over to celebrate my friend Joe's birthday. Poor guy was born on St. Patrick's Day, so when the 17th falls on the weekend, we don't go out but rather gather at someone's place for dinner and gaming. There was a lot of Nintendoland, a ton of pizza, a bit of wine for the folks who weren't me (I just get sleepy and don't enjoy it), and some really fun, free-roaming discussion. I've actually come away from it with an idea for a narrative wherein the events of the movie Matango (aka Attack of the Mushroom People) are loosely based on a (fake) real-life incident that happened at the tail end of World War 2, and the one guy who got out alive served as the inspiration for both said movie and the original pilot for Gilligan's Island, each of which contain very similar characters (Matango is from 1963, the GI pilot is from 1964). No idea what I'll actually do with it, if anything, but it's fun to play with crazy ideas.

Suffice to say, it's been a good weekend. Joe's actually off work tomorrow and has volunteered to drive me around to wherever I need to go, so if things don't go quite right, at least it won't be a crazy transit trip to the hospital and then the IDHS office to try to get things sorted out. I'm hoping that all the smiles and happy thoughts I've had this weekend allow me to keep my head on should trouble arise, both for the sake of not feeling too stressed and also to let me think on my toes and demand help and good answers from whomever I might have to talk to.

Thanks for all the encouraging words and enthusiastic responses. Despite all the stress of the Medicaid/state crap, I'm a happy man who has a pretty good life at the moment. I'm pleased to get to share the good moments with you all and that you're receptive to what I have to say. It's great having people who like to listen, most especially because it allows me to distance myself from my situation a little and think of things from other perspectives. Very valuable, and highly valued. You folks are wonderful and awesome.

Thanks Mimble! It's a trifecta, really. My coworkers are amazing, my boss is a great guy, and the shop's just killer as a whole. Sure, I loved the work itself when I was at the old shop, where I had a few good coworkers, but the owners and the overall company culture were less than stellar. The current shop is a completely different story. Good coworkers and a boss who cares not just about profits, but understands that repeat business comes from giving stellar service to every last customer is the key thing. He sets a really fine example for everyone beneath him, so between that and making smart hires (it may be a mix of retail and manual labor, but there's a multitude of actual nuanced skills in all that, or at least doing it well), we've got one of the few instances of anything where there is such a thing as trickle-down.

And there's trickle-up, too, because everyone loves the sport and the products and really gives it their all, so even in the off-season, when the profits just aren't there, he doesn't get too discouraged. Ultimately, it's a fine example of a fun job done in earnest, and it feels like a big family. I'm really lucky to be where I am. I talked with a buddy that I helped steer into a position at our second shop out in Oak Park via IM today, and he's not only enjoying the job, but has the same overall impression I do, and is super-happy as well. It was great to get to hear that about a month after his hiring, because I already know my boss is convinced this guy was the right choice. Not only does this make me feel good (I helped a friend, I helped the company, and my boss values my opinion!), but it's great news to have one more member in the work-fam. It's pretty much as dream job an instance of a fun job short of it involving a lot more money. If those things have to be mutually exclusive considering my interests and preferences, I'll take happiness every time.

So the talk the ACS social worker had with the IDHS field office supervisor she did get to speak with the other day? Figured my shiz out. It'll all good, the hospital and clinic confirmed it's all good. Things are getting paid for!

So now I'm all good until that first meager paycheck rolls in. But hey, I'm expecting that. I know what I have to do with that.

Thanks once again for listening and for all your help and suggestions and support.

Phew! That must be a huge load off your mind. Good stuff.

The less stress at this point the better. You keep kicking that cancer's ass, though.

Glad to hear it Ian! Here's to as stress free a process as possible going forward.

Your doing awesome Ian. I'm so glad to hear your getting things sorted!

Awesome! You don't happen to have a synopsis of the shiz and what the social worker did to fix it, do you? I'm really curious.

A for what the ACS social worker did: she took the time to repeat what I did initially, which was to call the IDHS field office repeatedly and fail to get to talk to someone. She then called the main IDHS office down in Springfield (the state capitol), who couldn't directly help her to help me with my case, but they gave her the name of another supervisor than the one we'd each previously tried calling. This guy actually picked up the phone, took the time to listen to the whole story of everything that had gone on, both between my efforts and hers, and either took the time to actually look into and fix the problem, or felt compelled to do so after it was made clear that she'd been referred back to him by Springfield.

As for the shiz: still not completely sure. The error that the hospital/clinic was getting was the same as the one I'd gotten when checking my eligibility via the IDHS automated hotline: "the patient is ineligible because spend down is not met". As far as I can tell, despite the document that said my spend down is and should be $0.00, something in their system was indicating that I did have one, and wasn't checking against the set value (again, "$0.00? Hell, I'll pay that now!" - what's the problem, right?) or something similar. My guess is that they'd had a spend down amount set initially and revised it, and my account remained flagged as having a spend down when it shouldn't because I hadn't worked or had reliable income since I got diagnosed. The application documents asked for my employment info and income, so they may have thought I was working when I wasn't, then realized during processing my application that I wasn't earning any money because I wasn't working. Spend down is the sort of exception that should be rolled into a separate program or sub-program, because it allows people with an income over a certain amount to still be eligible by "spending down" their income to qualify for regular Medicaid by way of paying a calculated amount of money towards their medical bills. But for whatever reason, it isn't separate, and this seems like an easy way for this mistake to happen again and again and again. In the face of people not answering phones and people not wanting to help in person, I can totally see this being a huge stumbling block for a lot of people.

Again, that's speculation, but at the very least, I know that my current spend down amount is $0.00 and whatever was causing that to be determined as unmet is now fixed. When I start seeing money from my job again, I'll need to go by the DHS office, show them my paystubs, and they'll have to figure out if I need to qualify via spend down. That's going to be crappy, but I've been expecting it, and now that I know that my spend down has been $0.00/not required (whichever it really is), I know that some of the money I haven't spent on living expenses in the past few months (thanks again, ChipIn campaign + benefit fundraiser!) is there to serve as padding and I'll be able to afford whatever that amount is and still pay rent, eat, etc. I'm really hoping to be through the brunt of this in the next few months, because August is the time of year where bike mechanics in temperate climates have to be sure they're saving up for the reduced work hours of the coming off-season.

Sorry I don't have any firm answers. I'm happy to have the problem resolved, but I wish I knew more about it, both for avoiding future problems myself and for providing useful info for people facing similar situations.

Glad to hear the good news

Yay that's terrific Ian! Hospital social workers are great allies to have on your side, their job would drive me insane but glad they do what they do.

Just up and reviewing the bike shop's service queue for anything I ought to know about, as today marks day number two back at work.

Yes, it's been a whole week since the last one, but this week involved a chemotherapy infusion and the previous didn't. I'm feeling worlds better than I did after the infusion previous to this most recent one, but possibly a hair down from where I was a week ago this second, so I'm super curious to see how I'll hold up today. I'm hoping to take away some insight into how big a gap I'll need to put between the day I come off the pump and the day I go back to work. I'm also hoping what I'm experiencing right now is a mix of "still need breakfast" and "b-b-but I just started to get into a groove with the new Monster Hunter last night" crybabyism - I'm not sure I'm feeling more fatigue so much as maybe feeling a little less heroic. We'll see what happens.

But hey, at least it's not St. Patrick's Day weekend again. If I survived that much kelly green and spray tan orange last Saturday, today's bus commute in should be a snap.

Yesterday went without a hitch. This time, though, I didn't wind up on a crazy adrenaline buzz and wind up being awake 'til the small hours of the morning. The next step is probably shooting for a couple days back-to-back and seeing how that goes. Since the shop has those long season hours on the horizon, there's the possibility of being scheduled for shorter shifts across more days, and I'm hoping that'll be advantageous if I need it while I'm still getting my strength back.

And yeah, my strength's not quite back. I can handle a lot more right now than I could have ever dreamed of considering how much of me seemed to waste away earlier in treatment, but I was up early Sunday morning running some errands ahead of snow that we haven't gotten here yet. I spent time on buses and maybe a bit under two miles on foot. By the time I was home, I was feeling quite winded, even though being on my feet for nine hours, using tools, and lifting light to mid-weight objects all day Saturday and didn't feel particularly tired when I got home. Thankfully, the next couple days are light for me in terms of leaving-the-house obligations, so there's time for rest and observation of what that rest does. This weekend's definitely been more positive than negative, but I am definitely missing my old body a lot at the moment.

Seems like a slow, but steady recovery

Glad to hear continued positive moments. Looking forward to the time they fill your entire day.

Keep it up, buddy.

I'm super glad to hear things are geting worked out, Nick. The crap you went through hits all the buttons that would send me into a rage, and then the proposed solutions involve bureaucracy acrobatics and fax machines. I'm usually pretty hard to get mad, but I almost punched my monitor. I'm glad to hear things moved toward getting that lady written up. If nothing else, it could be one more strike on her work record (in my experience, a single complaint doesn't amount to action in that sort of job), and you've helped prevent other people from being treated that way in the future.

But more importantly, I'm glad to hear you're still getting back to work, and that they're still supporting you.

Thanks! I unexpectedly wound up working at our new second shop out in Oak Park today, and once again, I was reminded of how fortunate I am to have the co-workers I do. There weren't any moments that I'd qualify as support moments today, just more of a "man, the people I work with are awesome" thing. But that's exactly what makes them capable of being as supportive as they have been. I love going to work and having tons of moments where I can't believe what a cool job I have, how happy it makes me, and how everyone I work with seems to either be on the same page or at least close enough to where they understand it and appreciate it. It's also nice to feel useful and do useful things after so many months mostly sitting around at home waiting on days where friends could come by and help me pass the time. I love my friends dearly, but there's misery in that sort of process - you're often at a loss to have anything to talk about but news/media crap and what's going on with your disease. Now that I have work breaking up the week again, those visits are a lot more pleasant and seem more about fun than survival/coping stuff.

As for monitor punching - yup. I'm super-relieved the ACS social worker was able to pull things off for me, but I'm still pissed that that's what it took. I don't know that I'll ever really be over it, to be honest. As I think I said before, the worst part is that I'm this guy with cancer and I've still got it "easy" compared to the less privileged folks hitting the IDHS office. How many people are hungry, losing shelter, or outright dying because of this old bat and her ilk? There's also something to be said about the perspective it's offered me - I have a much better idea of what it's like to be treated like sh*t/met with suspicion/just plain dismissed because some jerk thinks I'm not worth their time. I should probably consider myself "blessed" in the secular sense, but I keep coming back to how discouraged and dis-empowered I felt leaving the office that day, and it just makes me angry. If things were worse, I don't know how I wouldn't be able to either strangle somebody or blow my brains out. As I recently remarked in another thread that shall remain nameless, those folks have some "thick skin", and that's really about the only time I'd consider such a thing a positive, because being able to block/tune-out/hide a reaction to sh*tty behavior like that is necessary for them to be able to live in an unjust world. Although it shouldn't be, damn it.

Anyway, rant over. Thanks again for all the kind words. Life is good again, for the moment, and I'm doing my best to hang onto that while it lasts. It's working out so far.

Update briefing #912:

On treatment again. Things seem to be going well there. Newer drugs continue to counter-act side effects of the infusion drugs.

Even bigger, I've talked things over with work and we agreed things are going well enough from both our perspectives. Starting next week, I'll be working three days a week (Tues., Fri., Sat.) during non-treatment weeks, and two days (Fri., Sat.) during treatment weeks.

Things aren't amazing, but they are very good. More to come...

ianunderhill wrote:

Things aren't amazing, but they are very good. More to come...

I dunno, dude, that sounds pretty Goddamned amazing to me. Keep it going.

I agree with ColdForged. I'm pretty amazed.

Glad things are continuing to progress!

I guess I mean things "aren't amazing" because I'm currently feeling the effects of being mid-treatment and am popping lots of pills and it's not fun, but everything else seems to be quite excellent.

Hope the treatment things become boring again soon so you can really enjoy the other things.

Rahmen wrote:

Hope the treatment things become boring again soon so you can really enjoy the other things.

Yep - +1 to that! May your treatments become so much meaningless background noise/a minor nuisance because you're busy being happy and enjoying your life.

Thank you one and all. I am now, again, amazed.

I used to think that if one were to look around the world and not be depressed, then they weren't paying sufficient attention. Now I think the same thing, but with "amazed" as the expected result instead of "depressed."

No, I'm not high.

Hope things continue going well for you, sir.

Very glad to hear you're still arcing upwards, Ian. Enjoy!

Thanks everyone. Please forgive my lack of detailed posts of late. Things are a little tough right now. On one hand, life is increasingly normal, even good - my home environment is happy, I'm about to start working even more, and so on. On the other, I don't have anything to go on indicating where I'm at health-wise apart from some numbers on paper. It's probably going to sound ungrateful towards my circumstances (facing this young-ish, having amazing support, etc.), but I really wish there wasn't a sense of stasis about things. Right now, I honestly would feel better if I knew something, and I mean that either way - you're probably going to live another ten years, you've got six months, whatever. I know that's not how life works, but catching a glimpse of some sort of return to "normal" just reinforces the hell of ambiguity in this whole affair. As far as I know, going to the clinic every couple weeks, the revolting drain procedures, and piles of accrued expenses are the future. This vs. "normal" is increasingly jarring and depressing. The more I return to something resembling an ordinary life, the more the otherness of the Whole Cancer Experience stands out. It's not fun.

I don't expect any reactions to that. Just reporting, here. But while I'm at it, I would like to ask a huge favor: if you know anyone staring down an illness like this, do them a favor and don't define them by it. Don't make every other conversation about how they're doing in the face of their disease. If they want to talk about it, chances are that they'll bring it up. Regardless of your intent, constantly hearing, "How are you feeling today?" with that particular "you're dying!" insinuation in it skews severely ghoulish after a while, and in my experience, is ten times more irritating than the taciturn denial down at the other end of the street. At least the denial can be tuned out - constant fawning, whether in phone calls or flowery cards in the mail or whatever, makes me want to crawl into a damned oxygen tent and wither away like the fragile bird-critter imagined by the other party, just so I don't have to put up with that sh*t. Not even joking.

Of course, I'm not talking about any Goodjers in the above paragraph. You folks are cool.

I can see why you would feel that way. Well, at least now you can feel that way is the up side to it I guess

Heard just recently a colleague of mine will undergo a surgery for prostate cancer. Friday is when it will happen.
We don't really socialize outside work, so not much of chance to make any 'mistakes' that way. But I do want
to figure out what I can do more and if that is even wanted. He is an awesome guy and when he told the crew
about it, he did it in his usual matter of fact way. He has a great sense of humour and am sure that is going
to help him lots. Anyway, just to react to your latter statement