More updates to come
OK, it’s getting late after working a nearly 12 hour shift today so I’d better quit with the typing for now.
However, I’ll try to write soon about other stuff that’s been going on, such as maybe my fairly successful run at the stock market this year? And my new woodworking hobby that I picked up a couple of months ago (along with tons of new power tools I can review! Wee!).
I’ll try to get back to it soon.
A LabGirl Update
We’re actually about to hit the 2-year dating mark next month.
Crazy, eh? Almost makes me think she’d be willing to sign on for the long haul 😉
My biggest fear was actually that we’d be at each other’s throats after I moved into her place in late October, shortly followed being essentially being stuck together and having to deal with each other for a pretty long portion of an ugly midwestern winter.
But… we survived that winter, and survived it pretty well. We didn’t end up going for each other’s throats at all, and only had a couple of those “heated discussion” things over the course of the cold whether, which really weren’t even that heated.
Mostly we just curled up under blankets all winter and tried to keep ourselves entertained while trying to push away cabin fever, which was really starting to hit around January-ish or so.
Of course, with me working 50+ hours a week over most of that time maybe we just didn’t see each other enough to piss each other off 😛
But I think it’s more likely that we just really dig each other. Which is cool, cuz I’m really thinking I’d like to keep her around for a long, long while.
An update regarding my eye blowout thing
So back in November I wrote a little bit about my macular damage that likely resulted from multiple stress sources, the primary probably being the news about mom getting brain cancer.
Well, that turned into it’s own little bit of drama after having the appointment with the retina specialist in December.
The biggest problem was that this doctor was a total jerk.
I went in for the appointment, an assistant dilated my eyes and so on, and then this doctor spends literally about five minutes with me, looking into my eyes with a magnifying glass, and asking me the exact same questions the last doctor asked me, while offsides mentioning that there could be laser surgery needed.
After this five-minute session, he sends me down the hall, where I have an OCT scan of my retina done.
After doing this and then sitting around for a while, he then informs me that I need to have another type of imaging done of my retinas, which will require the application of a contrast dye and another specialized imaging machine.
Which is where it really begins to go downhill.
See, I work in the health insurance claims business. And I’ve seen a whole lot of bills for various types of scans involving contrast materials come across my desk, so to speak. And I’d noticed how holy-shit-expensive these tend to be.
And I have an insurance plan that has a $2800 deductible, which means that basically I have to pay for my health care services out of pocket and the insurance is pretty much just there as a safety net in case I get hit by a bus or something.
So… before I allowed them to take this scan… I asked. How much is it?
All in all the charges would come together… for just this one scan… to about $1800(!!).
So… explaining that $1800 is a whole hell of a lot to spend on some diagnostic scan for no reason other than “because the doctor said so,” I told them I wanted to speak to the doctor again before we got started.
I wanted to ask if it really had to be done right now. See… the previous doctor said these things normally heal up on their own in a few months, so was there really a reason this MUST be done right now, or could it wait a few months if there’s no improvement? Why do we have to have it done on both eyes when only one is having a problem?
Well, in a nutshell, he refused to even talk to me, and as a matter of fact acted completed pissed off and put out that a patient would even dare question him on it.
He said he wouldn’t discuss my case with me until after I had the imaging done… which of course completely missed the point of why I wanted to talk to him in the first place. He also rattled off a bunch of crap about how he could set himself up for liability if I didn’t go through with it, how it had to be done on both eyes (thus doubling the cost it would have been for one eye) because “sometimes there are signs about what’s wrong in the other eye,” and that it needed to be done to verify that there was no internal bleeding from the injury.
OK… I’m pretty sure that since it took me over a month to get an appointment with the guy in the first place, if there had been internal bleeding it probably would have been apparent by that point, and in fact I probably would have been in the ER well before that point. And why can’t we do one eye, and then, if it’s inconclusive, do the other? Why is it they *must* both be done right away? And what is that bullshit about liability? I’ve heard from doctors being interviewed a couple of times that out of all the CT scans done, the number that were completely unnecessary and were done mostly just as a “CYA” measure is estimated to be around the 80% range. 80%. Which makes me think this may fall into the same category – I was told to do the scan not because it was really needed – but rather because he wanted to cover his ass from all angles and, most likely, because that scan in itself would nicely cover several boat payments.
I told him I wanted to hold off and think it over before shelling out that kind of cash – and I was given a “refusal of treament” form to fill out, where I signed off showing that the test had been recommended to me and I had refused. Down next to where I had to sign they were sure to put in a bunch of scare language about how refusal of services could cause “worsening of the condition or BLINDNESS.”
I angrily walked the few miles home, and a few days later I got a letter from this doctor’s office advising me that they were no longer going to take me as a patient because of my “noncompliance.”
To top it off… a few weeks later I received a bill for services.. for nearly $800.(!!)
Well, in February I typed up and sent off a bitch letter that was a full two pages typed about why this was a load of crap, especially considering I didn’t recall having 3 of the 4 “diagnostic services” he was billing me for at over $150 each, not to mention about $350 for the “consultation” that was a useless 5 minutes in his office where we didn’t actually discuss anything, followed by his refusal to answer my questions a short while later.
It’s now April and that letter is still “in review” by the doctor.
As far as the eye problem itself?
It’s still there, but seems to have improved significantly on its own. Rather than what was a somewhat large dark/discolored/unfocused spot right in the middle of my right eye’s vision, it’s now faded signficantly to where I really don’t even notice it that often. It has unfortunately been a bit longer than the “a few months” that was originally suggested by the first doctor, but it does seem to be slowly healing on its own so I can definitely say I’m not ready to listen to any suggestions of crap like laser surgery just yet.
A mom update
She’s gone through her radiation therapy and two rounds of pill-based chemo.
The results are… not what we had hoped for, but not as bad as they could be, I guess.
Essentially all the radiation and chemo has, at least for now, stopped the brain tumor from growing larger. It did not, however, shrink the tumor at any noticeable level.
I’m torn on whether that’s good or bad.
I mean, it’s good that the halting of tumor growth should allow her to stick around probably significantly longer than she would have been able to if it had continued growing at the rate it was before.
However, that sticking around is while she’s in a deteriorated condition of body and mind that has to be frustrating beyond belief for her and is highly stressful for everyone around her.
She still can’t walk more than a step or two unassisted without falling, and in fact has a lot of trouble with most motor functions. Still can’t use her left eye. Her “communication center” in her brain has been hit hard, so she doesn’t talk much and when she does, it’s very hard for her to find the words she’s looking for – even when it’s stuff like the names of everyday items. She seems to have lost some of her hearing ability. And now and then she’ll seem confused almost in an Alzheimer’s kind of way, such as a couple of weeks ago when dad said “Would you like to talk to your brother?” after answering the phone, and mom didn’t react for several moments, then responding “You’re talking to Steven, right?” …. yeah. I don’t even have a brother.
Honestly it’s very hard for me to see her like this, and because of that I probably don’t go visit her as much as maybe I should – I’m over there at least every 2-3 weeks (which frankly is more frequently than I visited when she was healthy) probably.
Plus I know it wouldn’t help in my attempts to keep LabGirl happy if I were nowhere around every weekend – hell for the last six months she’s barely seen me but a couple of hours a day most days as it is, with how much overtime they’ve had us doing at work until real recently. (She has been very understanding though, and understands stuff like how I want to make sure I’m with mom on all of the major holidays and stuff like that, while I still can).
And dad just continues to be stressed out of his mind. On top of everything happening health-wise with mom (his wife and constant companion for the last forty years), the medical bills have been hitting, and hitting hard. Even with insurance and Medicare, their life savings is pretty much going down the toilet – and both of them just hit retirement age not long ago.
Oh hey, it’s a blog thingie
Wow, I really, really need to be better about using this thing. Amazing what tons of overtime, amazing amounts of stress, and a tendency to just write a sentence or two on Facebook can end up doing to kill a blog.
The defaulting-to-Facebook thing has to be changed around a bit – I mean the stupid little updates like “The steaks came out great on the grill!!!” and that sort of crap is fine there as it’s not exactly noteworthy, but when it comes to writing something that you might wish to re-visit someday or share with people who may not have been lucky enough to catch the message during the incredibly short life a message tends to have on Facebook (what… a few minutes to a few hours, tops, most of the time?) … those need to be blogged. (And, OK, maybe quickly Facebook blurbed about as well 😛 ).
Plus… I’m having trouble remembering if WordPress has the ability to back up to a file or not, but I sort of think it does, and that’d be a much better system for keeping something long-term rather than relying 100% on a free messaging system to remember your jotted thoughts forever.
So here will be an attempt to write what will probably be several updates… assuming the girlfriend doesn’t get annoyed with me ignoring her all evening while I type and pull me away 😉
Prognosis
Mom seems to have come through the surgery OK, and the docs were able to give us the breakdown of most of what they know earlier today, though I guess full biopsy results may not be available until Monday or something like that.
She’s been a bit groggy and a little “out of it” all day, but it’s expected she will probably be able to go home either sometime tomorrow or Monday.
The neurosurgeon took my dad & me aside and gave us what was basically an onslaught of bad news.
Verified it is a very aggressive brain cancer.
Because of the location, they can’t get to it to remove it (“it’s in the worst place it could possibly be in” were the words used).
It is hoped that through radiation therapy and possibly some chemo they will be able to halt further growth.
This will not by any means bring her back to her former self – it will just help hold it back from getting worse.
For a while. Maybe a year. Maybe a little more. Maybe a little less.
Dad’s talking about how he has no idea how he’s going to be able to take care of her when they live in a two story house and the bedrooms and bathroom are up two flights of stairs.
Not sure what to tell him – I really feel just as helpless as he does right now.
Mom: Surgery this weekend
So the full body PET scan they did came up with nothing, so the doctors have decided that they need to go in and do some exploratory surgery Saturday morning.
Even this “exploratory” surgery is going to be risky – in order to get to what they’re trying to “explore” they still have to somehow dig down and get to the center underside of her brain against the spinal column… without hurting her further in the process.
Assuming it goes OK, they’re still expecting to have to keep her for a number of days afterwards both so she can recover and so that they can keep her for observation to make sure she doesn’t start brain hemorrhaging, etc.
Dad has asked if LabGirl and I can watch their dog during what will likely be him spending pretty much day and night at the hospital by her side.
I have to clear it with LabGirl, and figure out some arrangements with the cat (as both the dog and the cat have a mean streak and I could easily see them getting into it), but I’m sure she’ll be fine with it.
The sadder side of me is of course thinking that if there are any complications at all, Saturday morning may be the last chance I get to see my mom.
But let’s just pray that’s not the case.
Blowing a Gasket
So a couple of days ago I was getting ready for work, and all of a sudden I had this MASSIVE headache, and noticed this thingie in my vision that was sort of like the after-image you get after looking into a bright light…. except it wasn’t going away.
I took a crapload of Tylenol and went to work, did some Googling and from my reading it sounded like I was probably having an ocular migraine. I’m not usually a migraine kind of guy, the last time I had one was so long ago I don’t even remember when it was, and the visual thing has never happened, but whatever.
According to the descriptions, it’s harmless, and the visual obsurity usually goes away pretty quickly.
Ya.
Then yesterday morning, the “blind spot” is still there. Hasn’t moved. Hasn’t faded. Hasn’t reduced in size. Something told me I needed to get this thing checked out in case it’s something a bit more serious than what I was self-diagnosing through Google.
So I make a lunch hour appointment with a local eye specialist, and I end up being there for about 2 hours having a crapload of tests run while the doc kept looking at things and saying she didn’t see anything that looked like it was wrong.
Finally they put me on this funky machine that does a visual scan of the macula (the part of the retina most responsible for your central vision)… and they found the the problem.
Showing me the image, she pointed out where I had somehow blown through a layer of tissue, which was now bubbling up and had a layer of fluid under it – causing the big “spot” in the vision of my right eye.
She said when it happens it’s usually in men in my age group, and that it seems to usually be stress related – then asking if I was under an unusual level of stress lately (to which I simply answered yes, rather than ranting about how noooooo dealing with working 10 hours a day six days a week, and mother dying from brain cancer, and adjusting to newly moving in with my girlfriend, all at the same time, wasn’t an unusual amount of stress at alllll).
She then said there wasn’t much that could be done for it other than to just give it time to heal naturally, which can take up to a few months.
Also scheduled me for an appointment with a retina specialist just to double check.
So… I now get to work on a computer all day with this damned huge spot in the middle of the vision of my right eye for who knows how long. Great.
And I suspect I’ll probably blow out another one once I get the bill for them to tell me there’s nothing I can do – they had to do a crapload of tests to get to that conclusion.
Another Mom Update
LabGirl and I stopped by for a visit Sunday afternoon.
Things appear to be progressing in the wrong direction.
She basically tries to not stand up or walk unless she absolutely has to.
And, very sadly, she appears to have completely lost the use of her left eye. She mentioned the doctors have told her that even if they are able to operate on the tumor (which still looks unlikely) she’ll likely never get it back – it seems that once the brain shuts down a vision sense like that it’s next to impossible to turn it back on again, regardless of how much has healed.
She got a couple of calls from relatives while we were there, and just from her describing to them what’s going on, LabGirl had to leave the room because she had started to break down into tears.
Amazing, but Mom actually seems to be the strongest of all of us right now as she goes through all this.
She had a PET scan yesterday. The docs have been unable to even do a biopsy on this brain tumor because it’s so hard to get to, so they’re doing a full body scan actually hoping that this thing has spread somewhere else, so that they can sample it and do a biopsy so they can have a better idea what exactly they’re dealing with. Probably a few days before much comes from it.
Mom’s not doing well
Although I’m not really in a writing mood I figured I should at least mention this – my mom’s in pretty bad shape right now… to the point where I am very afraid she may not be here with us on this earth much longer.
The symptoms progressed very quickly – a couple of weeks or so ago she started having trouble with her vision, seeing double. She saw an ophthalmologist who told her that from what he could tell her eyes were perfectly fine, so whatever was causing her double vision, it didn’t appear to be her eyes themselves.
So she scheduled an MRI.
The results of the MRI were, to say the least, not good.
She has some sort of growth, possibly a tumor, at the base of the brain and against the spinal cord, at an area called the pons – it’s jacking with her senses and her symptoms are getting worse – only a couple of weeks later, and now her left eye will no longer move right of center, she can’t walk straight, and her balance is messed up.
Although she’s got lots of doctor visits lined up, so far they are not at all optimistic, and say due to the location (which is pretty much smack dab bottom-center of her brain) it may not be operable – and even if it is (which appears to be unlikely) they’re not even sure what the mass even is yet – though one possibility may be some sort of moved recurrence of the breast cancer that she fought against so hard about a decade ago and thought she had beaten.
My dad is so worried he’s hardly eating, and I’m not ashamed to say I broke down in tears for a good part of the night after he told me about it, and continue to try not to think about it too much as I go through my day just so I can function.
I’ve never lost anyone close to me before, and definitely not a family member. I mean, I of course knew the time would come eventually, but now… she’s only in her mid 60’s.
And I keep thinking sad thoughts like… what if she passes on before I get married? What if she never gets to meet my future kids? What is dad going to do without her? I mean, like probably most couple that have been together for decades, their whole lives revolve around each other.
We were never the closest of families – we’re not were never the give-hugs-and-tell-everybody-you-love-em type family, and really we never needed to be – my parents have always shown how much they care through their actions if not necessarily their words. Always there if I needed them, even if I always tried my best not to have to burden them.
I work in a building that’s right next door to a Catholic diocese building. They have a statue of Christ out front with arms outstretched overlooking a pond and a grove of trees.
Yesterday during my break I took a sit under a tree, meditated for a short while, and then prayed for the first time in a very, very long time. I can only hope it was so out of place that somebody actually listened.
Refractional Darkness 