ianunderhill vs. cancer (RIP Nick)

ianunderhill wrote:

Long-term, this probably means I'm going to have to poop twice as often as I do now.

IMAGE(http://i.imgur.com/2nLwd.gif)

Aw yiss! Poop time is best time. I do some of my best thinking and reading on the toilet. Although they did not really tell you anything, it sounds like you are in a pretty good position relatively speaking. Keep up the good spirits!

Glad you have a better sense of the near future and while I understand the frustration with them treating your situation as unique, remember every individual is unique in how they respond to treatment so that would be true almost regardless.

Good luck!

My case is just so strange and missing a lot of symptoms, and they said there may be hope in the combination of that and my relative health/youth and that there's nothing apparent in my other organs. But outside of the surgery and subsequent chemo plans, I barely know more than I did last Friday. I have no question in my mind that I'm in good hands, it's just super frustrating.

There's a method to approaching complex problems that fits here. "Make a plan, and make it work." With that, you've got a focus, and that's a big part of keeping yourself sane.

Look, the fact is, the missing information is *bad* information. The lack of it is encouraging, and to my mind, what they are doing is to propose following the standard path, but with the option to change course if things are better than usual. Look at it from the positive side, and there's a lot of stuff to be grateful for in there.

Chipped in here as well. All of Goodjernation is rooting for you, and you hit the nail on the head: the way you express gratitude in these parts is to beat the f out of cancer.

We believe in you.

My thoughts are with you, Ian.
As ThinJ said, "Kick its ass."

ian wrote:

My case is just so strange and missing a lot of symptoms, and they said there may be hope in the combination of that and my relative health/youth and that there's nothing apparent in my other organs. But outside of the surgery and subsequent chemo plans, I barely know more than I did last Friday. I have no question in my mind that I'm in good hands, it's just super frustrating.

Not knowing is one of the hardest things to deal with in life, I think. It's something that I've also become very familiar with the last 4 years. When my 4 year old daughter was born, she lost a good deal of weight; over 25% of her birth weight within two weeks(from just over 8lbs to right at 6lbs). She was hospitalized for observation and to see what the cause was. After a week where nearly all likely causes were exhausted, on a last chance long-shot the Doc ordered a head CT, which showed the likely root cause; that she had been born with a congenital brain defect. While developing, a fairly large part of her brain simply didn't. To this day, we still don't know why; neither my wife nor I carry the genetic defect that she does.

That said, it's important to focus on the concrete things. With my daughter, my wife and I have focused on what we know, what we can affect. For you, well, I can't say I have much advice; that whole walking in shoes thing is apparently fairly accurate. That said, you seem to be an extraordinarily resilient dude. Find those things that are good in your life; grab hold of them, never let go. Oh, wait, generic advice: Be active with your team of Docs and Nurses, too. I have found that when the Mrs and I are engaged with them, it's readily apparent that some folks are in it to win it, and some, not so much. No less effort on the latter folks, but I've found that folks in the first group are just more effective in dealing with my little one and her quirks.

Again, best wishes. We're all rooting for you.

Your attitude astounds me in ways I haven't been for in the 3 decades I've been here. I think I can safely say, that even if I don't know you, you're my hero.

I'll keep the whisky ready when you are, my friend.

ZaneRockfist wrote:
ianunderhill wrote:

Long-term, this probably means I'm going to have to poop twice as often as I do now.

IMAGE(http://i.imgur.com/2nLwd.gif)

Aw yiss! Poop time is best time. I do some of my best thinking and reading on the toilet. Although they did not really tell you anything, it sounds like you are in a pretty good position relatively speaking. Keep up the good spirits!

OK, I know cancer is not the least bit funny, but that made me laugh.

And yes, pooping time is great thinking/reading time - you're just sitting around anyway...

Your conversations for the next six months wrote:

Poop poop, colons, butts butts butts, farts farts, colon, poopin. Errybody be talkin' 'bout your butt.

Get used to it. : )

My family on my mother's side has a 50% chance of passing on a genetic defect, a mutation that causes colon cancer to run rampant in my family. We lost a lot of people to it at young ages before we knew what it was, as it sometimes manifests as another cancer or another strange pain somewhere else after it's metastisized. Now that we know what we're dealing with, prevention and screening has helped so much. You may not be close to your family, but it might be worth finding out if yours is caused by something similar for the benefit of those you share genes with. Knowledge is power!

It sounds like you have silly parents. Glad to see that you're not going to let them make this about them; it's about you, and getting you better.

Interested in purchasing said beer! Solidarity bro. <3

Edit: I know it feels sappy and silly, but...maintain contact with the people you love and the people who love you! Life is way too short to miss out on I Love You's and meaningful bonds. This stuff matters. Probably more than anything else.

So I'm finding that every interaction with my parents in the face of this is stressing me out.

If I'm tired and don't want to talk at a given moment, and state such in an email or text containing an update, they call right after it's sent.

If I explicitly tell them, "This is all we know right now and nothing more will be known until they do X," I will get questions phrased along the lines of "What about Y?", where Y is exactly what I just explained in plain, simple language that any rational person could understand.

Now they're bugging me about coming out for the surgery. Instead of just figuring it out, they're asking me a bunch of stuff about where to stay. First there's talk about whether they can stay here, and despite my reminding them that I have a roommate and we have a small place that just barely works for two people, there's talk of bringing an air mattress and trying not to be in the way. Then they cop to the fact that my roommate is still here and I don't want him feeling intruded upon and they'll start talking about hotels. I'll say I don't know because I don't stay in hotels around where I live. Then they'll start rattling off the names of places that are clearly not in Chicago."That's out in the burbs and will be an hour's drive," I'll say, and then get told about how crazy prices in the city are and how that's out of the question. Then I'll get asked about "public transportation" and have to explain for the billionth time that only regional commuter rail goes out to some of these places they're naming, and if they want to deal with that, they can, but it's going to involve the infrequent service commuter rail is fraught with, and they'll still have to connect to local bus or train service once they get into the city. Then there's talk of extended stay hotels and being here for weeks despite the fact that I'm going to be in bed a lot during the first two weeks following surgery. I go into this and get a sobby sounding, "Well, we just want to be there for you, if we wind up in the way, we'll go." This conversation has been had two times already, both the same damned subjects and structure, and nothing's getting through.

Overall, I don't know what to do because they don't seem to understand anything I tell them and it really feels like they are making this about them. If they want to visit, fine, I appreciate the support, but they really don't seem to be receptive to my own wishes or needs or anything factual, and I'm really dreading how much more this is all going to stress me out when they are here.

At any rate, sorry for going on a tear, and thanks for the opportunity to vent. I feel I shouldn't have to be thinking anything like this at all at age 30 and I feel quite ridiculous, but my heart rate is noticeably higher after just having had another of these conversations. I'm honestly feeling more anxious about their presence/involvement than I am about the cancer right now, and so I figured it was a good idea to go on a tirade and try to get some of it out.

Also, that animated .gif is ridiculous.

Hey, PM me if you want details of what life is like post colon removal. I've had about half of mine taken out, and while the recovery is a literal pain in the butt, I'm pretty much back to normal. And kick that cancer in its rear!

Holy crap, that's super useful and helpful, thanks for the offer! PM'd.

FWIW on dealing with parents; My diagnosis and prognosis bothered, and continues to bother my parents (and especially my mother) more than it ever bothered me. However what I eventually realized was that it is all out of love and concern, she was doing her best to support me but she was facing the loss of her son and while I was okay with it she was by no means ready to even think about it - she needed support too. This realization helped me bring things into perspective and support her while she supported me, it ultimately brought us all closer together as a family as everyone learned more about what each other needed. Moral of the story; you may have the cancer but it's attacking the people who love you as well, try to hold out through everyone's initial shock and confusion.

The cancer center here also had programs and counselling services for family members and supporters, your hospital may have something similar, certainly worth checking out.

Very insightful, krev82. I think what I may try to do is get them to use a fair deal of their visit taking advantage of those resources available to them through the hospital. As mentioned before, I don't think they're likely to seek any help/counseling themselves, but with the insane (and I mean insane!) amount of support the hospital's given me so far and the number of times we've talked about how my family fits into all of this, I don't think it'll be all that hard to get some staff to help me talk them into it. Beyond keeping them out of my hair a bit so I can actually rest during recovery, it'd be a good kick-off for what they need but I'm not in a position to offer - support in their dealing with my disease.

Today's going to involve a lot of calming myself down, but I'll probably call the RN on my case tomorrow and pitch the idea so I can find out who I need to get involved to make this visit worthwhile for all of us.

Amoebic wrote:

My family on my mother's side has a 50% chance of passing on a genetic defect, a mutation that causes colon cancer to run rampant in my family. We lost a lot of people to it at young ages before we knew what it was, as it sometimes manifests as another cancer or another strange pain somewhere else after it's metastisized. Now that we know what we're dealing with, prevention and screening has helped so much. You may not be close to your family, but it might be worth finding out if yours is caused by something similar for the benefit of those you share genes with. Knowledge is power!

I'm getting genetic counselling in a few days for this very genetic defect - my mother is still in the process of getting tested, so they are doing the counselling for me now to have it done with so if I need to be tested, then at least I'm not waiting months for the pre-test counselling.

Were you tested too? And if so, was it a long wait for the results? I'm happy to move this to a PM if you like (I don't want to hijack the thread), but I'm curious about it since I may have to get tested myself. It runs in my mother's side of the family - my grandmother and two of my mother's sisters are positive for the defective gene, and my grandmother has already kicked colon cancer in the butt twice.

Mimble wrote:

(I don't want to hijack the thread)

Maybe we need a genetic counseling thread. I'm winding through something related.

::

Ian, do you have maybe a tactful but firm friend who could help run interference with your folks? You have plenty on your plate without stacking their awkward anxiety on top.

Hopefully the hospital can help steer them into the support programs too, and let you focus on the ass-kicking. I think you're definitely on the right track there.

Keep in mind that, like others mentioned, your parent don't know what to do. Their baby is sick, with CANCER, and is going into surgery!! All they can do is try to be there, the best they can. But, just as they don't give out useful books to parents when they have kids, they don't give out useful books to parents or when their adult kids are really sick.

clover wrote:
Mimble wrote:

(I don't want to hijack the thread)

Maybe we need a genetic counseling thread. I'm winding through something related.

Done.

*hug*

She sounds perfect, actually. And I bet she would be willing to do this for you... people like a chance to use their superpowers for good.

clover wrote:

Ian, do you have maybe a tactful but firm friend who could help run interference with your folks? You have plenty on your plate without stacking their awkward anxiety on top.

Hopefully the hospital can help steer them into the support programs too, and let you focus on the ass-kicking. I think you're definitely on the right track there.

I may resort to a friend, I'm just not sure who as of yet. One good possibility is a good friend of mine's mother, who has been there as phone support for the times where I can't reach anyone else and need to talk. She's been through (breast) cancer and GI surgery herself, she's very cool, and I have a great rapport with her. What may be beneficial is the fact that she's got a few years on my folks, so the whole peer or even authority-from-age thing might actually play well as she's quite a bit more rational than they are, and also has a slightly more objective take on things as I'm not her son. I may well give her a call this afternoon and run the idea by her. She's retired and just as much a close personal friend as a friend's mom, so she's got time to mull it over and do it while still having a personal interest in things as she wants to help me through this. I'm a little leery about pulling her in and having her deal with my folks just because of the burden, but in her pre-retirement days, she was a secondary school teacher and thus has a fair deal of practice dealing with the "we're the parents and our baby!" crap mudbunny specifically mentioned.

**sigh** Thanks again, everyone. You people are seriously amazing at injecting good ideas into difficult situations. I shouldn't be surprised that a large enough percentage looking at the same problem yields useful suggestions, but I'm no less graceful.

Chipped in. I know you moved to the North Side, but cancer is totally not an appropriate cosmic response to that.

ianunderhill wrote:

Thanks for the supportive words everyone. I've been moved by the love and generosity here before, but being on the other end of it is unreal. I consider myself fortunate that I wound up here when I did.

And Ferret, no need to be perfectly serious. I put a lot of stock in humor, particularly in the face of hardship. For what's often all one can hold onto, laughter is surprisingly rich. And buttery.

Just don't, like, bust a gut laughing.

wordsmythe wrote:

Chipped in. I know you moved to the North Side, but cancer is totally not an appropriate cosmic response to that.

Yeah, it's really more of a "here, let's put your balls in this vise, we've lined the jaws with velvet" kinda thing.

Thanks, by the way.

I've got a slightly different view about the third party having a word with your mother - I think it's a bad idea. More people complicates things and can lead to playground attitudes of 'Why didn't he speak to me?'.

I suspect the problem is that you're not being firm enough with them. You don't have to get angry, but abrupt is very useful.

I understand your view, 1Dgaf. I felt the same way going into this, but with phone call after phone call involving a lot of talking at cross-purposes when I'm already going out of my way to be clear on everything, I'm moving closer to thinking that I might not really be bothered so much if "Why didn't he speak to me?" playgrounditude is the reaction in the short term.

To be more clear: my main thing here is, again, making sure that my parents look at available resources to help them deal with their fear, their anxiety, and their stress so I can focus more on dealing with my own and working through the physical ordeal of the treatment. I don't want them being any more scared or frightened or screwed up over all this than they need to be. I love them, I just want them to have somebody who knows how to deal with that stuff help them deal with it. It's not something I know how to do and certainly not something I can do when I'm bed ridden or having to be carted around by the efforts of others.

EDIT: And I didn't articulate it when I wanted to, but the outcome mentioned in the previous paragraph is what I hope to get them onto when they're here for my surgery. I don't want them sitting around in the hospital going, "Our poor boy has cancer!" and then "Our poor boy has cancer and he's sick and tired of his mom and dad being around! We can't seem to do anything right!" while they're in their hotel room and nothing else. That's just going to be misery and nobody needs that.

I think you have plenty to worry about underhill. I am sort of with 1Dgaf on this. Despite that I can fully understand your point of view.
But not it has become a worry, added to what you already have on your plate.
Set out things clearly what you need from people and also certainly what you don't need. And a third party can be useful, or maybe should
help you to state your needs for you if that is a big help to you. But you have to be clear and firm on things for sure.

Anyway, good luck of course and hope the input helps. Of course you will decide in the end As it should be.

From what you've said, it seems like the friend you mentioned could at least be someone who you could point your parents at for the trivial questions (hotels, transport), so that's off your plate. You don't have to ask her to deal with the full "my baby has cancer!" side of things. Also, for your sanity and de-stressing, it sounds like she'd be a good one to talk/vent to about this.

If there are any people you know even fairly remotely that your parents could talk to about the parents' side of things (parents of any of your friends who've dealt with something similar in their kids?), that might be more approachable than a complete unknown and give them another outlet for their stress, rather than always coming to you.

Good ideas, Cod. Conditionally, it just doesn't work out that conveniently - the only mutual friends my parents and I have are all a bit younger than they are, have younger children, and none of them have ever really had to see their kid(s) through anything much more than broken bones, sprains, and the like, so there's not a lot of "our kid was in the hospital for this awful thing and here's how we coped" to go around. I'm definitely holding off on having my friend('s mom, whose also a friend) talk to my parents for now, but I'm thinking of just asking her if she'd be willing to just give them a call and offer her support should they wish to talk. As Sparhawk notes, third parties can be useful. Just having one more name/face/voice on a list of prospective people to talk to might be a good thing, even if it's only feeling like there's more resources than one initially expected to have available.

I did have a conversation with my mom this morning, and she's kinda stepped it up in the way of taking care of logistics herself, which is good. I guess there's something to be said for the strangeness of circumstances, but apart from being scared/nervous/anxious about the reason for the visit, getting accommodations squared away is functionally the same way you'd go about doing it for a vacation - you look at pricing and proximity and you shop around. I think that's maybe just clicked for her after having had some more time to process everything. Hopefully this proves to be a trend and everything eases up a bit for all of us.

I also got a good story out of her regarding all this and an encounter she had at work yesterday. One of her superiors came to her desk and revealed that she'd basically gone through the same thing I'm dealing with twenty years ago - crazy abdominal pain out of nowhere, shocking diagnosis in a family with no history of cancer, and the same invasive surgery and subsequent chemo I'll soon be facing. This woman not only reassured her that she's wound up fine after all these years, but more importantly, gave her a personal contact number and encouraged her to get in touch should she need anything. I'm hoping my mom takes her up on this and starts to get a feel for how useful being able to talk to someone about all this can be, and that that carries over to both my parents talking more to other family, friends, and maybe some professionals just to keep their anxiety and fears in check.

On the financial front, I'm still waiting on a definite go-ahead, but the status has moved from processing to pending, which apparently means they've agreed that I meet criteria and are just waiting on final approval. I found out as my abdominal distension has increased again, albeit nowhere near as rapidly as befor, I'd phoned my RN to ask about scheduling another paracentesis prior to the surgery. It's not bad yet, I just know it's going to get worse in the next few days, and draining several more liters soon should keep me comfortable and maybe even allow me to get back to work for a few shifts prior to knife time. Honestly, I want to be working right now more than anything - sitting around at home after I've gotten my strength back makes me feel like crap, even if I am spending that time playing games and dicking around online. I'd be much happier right now if I were seeing my regular customers and working with my hands and all that happy work stuff. Trouble is, the discomfort from the current level of distension/fluid build-up is just substantial enough to make standing for six or more hours a real struggle.

And yeah, there's also that whole "this really isn't my body!" disconnect. As the handful of Chicago cyclists on here who've met me can guess, my gut looks really out of place on the rest of me. It's not only surreal, but it makes me a little concerned about how I might mentally separate my physical status with how I'm thinking and feeling. From what I understand, the surgery should stop the irritation that's causing the fluid build-up, so I'm really just more eager to go into surgery than anything else. The 19th feels so far away right now.

ianunderhill wrote:

Target date looks to be the 19th of this month, with roughly five days of post-operative hospitalization and then three to four weeks of recovery time prior to beginning chemo. The primary bit of the procedure is an open right hemicolectomy - basically, they're going to go in, take out the affected section of my colon, and ultimately make it shorter. Long-term, this probably means I'm going to have to poop twice as often as I do now. In tandem with this, they'll be doing an omentectomy, in which they're going to be removing the omentum. The omentum is the layer of fat that lines the abdomen. The main reason they're doing this at the same time is out of concern that there might be cancerous material in the omentum, and removing that plus the affected bit of the colon at the same time means that the chemo can stand a better chance at wiping out any cancer cells still in me post-surgery.

Toddland wrote:

Hey, PM me if you want details of what life is like post colon removal. I've had about half of mine taken out, and while the recovery is a literal pain in the butt, I'm pretty much back to normal. And kick that cancer in its rear!

I had 18" of colon removed about 7 years ago when I was diagnosed with Stage 1 Non-Hodgkins Lymphoma. That's probably not a lot in relation to how much you might actually have removed, but I will say that I have had no issues with anything after recovery. It did take well over a year for the muscles that move stuff along to sync up to where I had normal sounding bowels without constant gurgling from my gut, but I never had trouble eating anything I wanted post surgery.

I hope your surgery goes as well as mine did. I will say, however, with my vertical abdominal incision, the amount of stuff you just don't realize rely on those stomach muscles is immense. And those first few days of movement, any coughs or sudden laughter, etc are all quite painful (worse than kidney stones for me), but you'll get past it. Scars will fade, and this will be a distant memory some day when you come out the other side.

Best of luck. I think the key to my handling things so well was my refusal to get sucked into the "woe is me" mindset and just face up to it, get determined, and do what it takes to make myself better.

Since cancer, I've been in better shape physically than I had in years prior as I've realized that only I can take care of myself with exercise and diet.

Thanks for the story, MannishBoy. The more I hear from people who've had similar surgery, the less daunting the whole thing seems. I'm definitely looking at it more as a serious bodily inconvenience than I am an ordeal (which is what I would still call the whole "so is treatment going to ultimately make me better?" question, which is of course unavoidable).