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Just so people know, I've pretty much quit updating here. I try to remember, but well... I'm Meg Justus on Facebook, if you want to keep up. I know there are lots of folks here who don't do FB, but I'm afraid that's just the way it is.
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Things have completely fallen apart with my sister, mostly but not completely on a personal level, but *I'm* going to be okay. She wanted to push me into this particular assisted living place before I could even sleep on it so she could go home to Texas next week, but it's not the right place for me. Granted, I'm way too agitated to be making decisions like this right now, but I at least need to talk to my palliative care specialist to see what I'm *capable* of before I make a decision like this.

I have a guardianship service holding things together for me and getting me to appointments, etc., who will help me settle somewhere better, and, thank gods and my parents, the money to pay them. After this experience, I'm pretty much abjectly terrified of asking for volunteer help because it would have be to be iron-clad reliable and the "I can help" would have to come attached to, "I will not wait until you tell me what I can do -- instead, I can see you need this and I will come do it at thus and such a time and place -- is that soon enough?" I know that's not possible, so don't offer and that's okay. I know that sort of thing is an unreasonable request, especially when made by someone who's always prided herself on her independence and really doesn't know how to draw on friends in a reasonable way in a time like this.

I'll update as I'm able, so please don't ask. And this *is* just an update. The overwhelming sympathy is lovely, but it *is* getting overwhelming [wry g]. I mostly just need to write this out.
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Looks like -- if my unexpectedly badass sister can keep forcing my HMO and my assisted living place to accept the same pieces of the medical paper, whcih she seems to be pulling off against all odds -- and if I can get the movers to cooperate in a timely manner -- I should be settled in anotehr couple of weeks. No address yet.
I know where I'll be, just not in what apartment yet.

Also, sorry about the typpos. Med adjustments still in progress.

I like the new place. Not enough spoons to discuss it in any detail, sorry, so please don't ask.

Continued good thoughts accepted if that's okay.
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Well, I got my prognosis today. It's one I've pretty much been expecting since I received the results on my lung biopsy no matter how much I dreaded them. My cancer, in four different places lung, uterus, breast, and spine) is terminal (and, yes, I've had opinions. Dear godlings have I had opinions. Without treatment other than for pain (which admittedly at the moment is working better than it has since I got home from the hospital after my appendix), I've got roughly a year left. With treatment (and absolutely *no* clue what kind of pain and other quality of life levels said treatment would involve, -- information that is both essential to decision making and absolutely unavailable to me, which has got to be about the worst catch-22 on the planet), about the most I could expect is two years, possibly less. I'm at the point of trying to decide what to do. I'll be honest. I am firmly on the side of quality vs. quantity. It's not worth it to me to be in agony for two years just to live that extra year. Bear in mind, though, a) that I will do what I feel is right for me to do,and b) that I only got this information *today,* so the absolute last thing I need anyone to do right now is have anyone tell me that I should do my best to live as long as possible. I'm not saying this because I think any of you would do these things to me, but because I need to be emphatic about it *for me*, no matter what (so far as I know I was perfectly healthy at the end of May). FWTW. I'm still pretty much in shock over it all, and will be for a while. my sister Ann and Loralee are taking good care of me, Ann has been holding my hand all the way, and Loralee's already found two good assisted living places for me to visit, which will convert to hospice when the time comes, and which have space available either immediately or with in a couple of weeks.

So. That's my news. Anyone local who wants to be on the list of people I give my new address digs to who would like to, given my current condition that day, either come visit or possibly even take me out for a visit, please comment here.

And I still welcome all good thoughts, etc. Please.

At least I was right when I kept complaining that Social Security and Medicare would no longer be there for me when I got old enough to be eligible for it...
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All day Sunday at ER, all day yesterday at Urgent Care, and as it turns out I'm allergic to Dilaudid. On two kinds of morphine now, and Ativan, and still in a lot of pain. Don't expect to hear much from me in the near future.
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The brain scan came out clean!!! No brain cancer.

OTOH, they did *not* find the hamsters and their wheel, either, but all in all? I'll take that result with bells on.
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Today I had the brain scan. With my head inside the MRI machine for 40 minutes. Wearing what amounted to a hockey mask. And the Ativan hadn't kicked in yet (the timing of that delightful little pill is a bit tricky, but I think I've got it down now). Massive claustrophobia and tears just streaming down the sides of my face and "please can you go get my sister?" who held my hand all the way through the process, although once the Ativan *did* kick in I was doing much better (except for the stopped up nose from the crying). Reason number 27 why I need her here for this.

On top of that, of course they wanted me on my back, but a) they gave me some padding to put under the sore spot, b) I had loaded up on ibuprofen beforehand, and c) the Ativan helped. The back pain didn't really kick in until about 20 minutes in, but it got pretty bad after that. They pulled me back out of the machine 10 minutes before the end to inject me with dye so they could get contrast pictures as well -- the tech was good at the vampire thing, but of course my veins all went running to hide next to my bones, as usual.

*Please* don't let them find brain cancer on top of everything else. *Please*.

I did manage to get from Kansas (where I'd left off at the last test) to Cape Breton Island in my "inside the machine travelogue." And that really does help. I suspect I'll make it home during the next test and have to do one of my other trips for the last one. Which is okay.

I did ask the tech if he could keep an eye out for hamsters on wheels in my brain, but he didn't find any. Alas. I know there are some in there. And I was hoping there was a way to remove them.

Two more tests to go. I don't know if they're going to stick my head in the machine for the full body PET scan, but a girl can hope they won't, right?
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Which is not like doctors without borders.

I had my first meeting with the oncologist this afternoon. I saw lots of pictures of my insides, but the upshot is she wants to take more (I get a full-body PET scan, an MRI brain scan, and a bone scan -- none of which, at least, involve taking any more bits of me -- and I have Ativan to take an hour before each scan, so that's good, too). The breast biopsy appears to be off the table (no pun intended) for now, thank gods. Apparently we've got much bigger fish to fry (that's my sister's translation of what the doctor said). They're also going to closely examine slides from the two existing biopsies side by side to determine for sure that they're not the same cancer (the doctor is pretty sure they aren't, but she wants a more definitive answer from the radiologist).

The back pain is getting worse even though the gabapentin dose has been upped, and there are cramps again, too. I've contacted both my PCP and the oncologist to see if there's *anything* to be done about that. I know they're going to say narcotics, and my -- admittedly extremely limited -- experience with narcotics was *not* pleasant. *Why* does the pain always get worse at night??? We're talking a baseline of about seven, with leaps up above eight when I lie down. And it's bloody unrelenting. 24/7 without a break, although it is better during the day than at night. If I ever catch whoever's following me around and jabbing me in the back with that piece of rebar, their death is going to be slow, laborious and beyond painful. "With a spoon?" "Yes, you twit, it'll hurt more."

Anyway, my next appointment with the oncologist is on Friday the 11th. Onward and sideways, I guess. I wish I'd gotten more answers, but apparently there just aren't any yet.

"I can't do this, Sam." I just can't anymore. And, yeah, I'm being a drama queen. Sorry.
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So. I got the results back from the lung biopsy. They were cancerous. I don't know yet if it's metastasized from the uterus or if it's something else altogether. I have an appointment with an oncologist on Tuesday to decide how to move forward on this. But if it's metastasized then this is stage four cancer.
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So. Lung biopsy is done. They used the same kind of sedation they use for colonoscopies. I remember being awake, but I swear I was in the room alone the whole time. No voices, nobody touching me, not even the sound of breathing. Not that I'm complaining. And except for my back being a little sore (a helluva lot less than the ongoing supposedly fixed popped rib), there was no pain or trouble breathing afterwards.

What did upset me was being unable to reach the bandages in the middle of my back the next day in order to take them off 24 hours after the procedure. I finally ended up at urgent care, because I was literally having a panic attack about not being able to reach them.

I had a mammogram and a breast ultrasound on Wednesday, which is resulting in another biopsy on my left breast this week, for the same reason I had the lung biopsy, to rule out whether the cancer has spread.

I should get the results of the lung biopsy tomorrow or Tuesday, and the breast biopsy a few days after it takes place.

So far as I know, surgery's still scheduled for August 8th. But that could change depending on the results of the biopsies.

I feel like swiss cheese. And if I thought I had a prayer of a chance of outrunning this, I'd be in my van right now, headed god knows where.
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Well, I have an appointment for the lung biopsy to check out the nodules they found when they did my MRI. Friday. At 6:45 in the *morning.* They'll keep me for six hours. They're going to go in through my skin, not down my throat. And this determines whether I have stage 1 or stage 4 uterine cancer, with everything that implies. And thus how my treatment goes. More good thoughts, please? Boost the stream? I'd be grateful.
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Home. Exhausted. But home.

27 days till surgery. After healing from that I may start feeling human.

whee!!!!!

Jul. 11th, 2017 07:59 am
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I haz a normal white blood cell count!!!!!

Oh, and I get to go home tomorrow! (I am having an MRI today -- this is prep for the surgery next month). I'm not well as such, obviously, and won't be until I start recovering from the surgery next month, but at least I can go home and wait the four weeks. Still bloated. Hope the heck that goes away, and I don't have to live with that for four weeks.

As of today, I have been in the hospital a bloody *week*. I don't begin to want to know what state my apartment is in, given the disaster it was when I left it (I was sick enough that a *lot* went by the wayside for the last three days or so before I went in the hospital).
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Short but filling.

Item the 1st: I'm down to about 14,000 on the white cell count now (I was at 22,000 when I got here, and I need to get to around 9500, but since I was at 16,000 yesterday morning, that's very doable apparently)

Item the 2nd: I get to have more than liquids now (for the first time since Tuesday the 4th ) I just ordered salmon, rice pilaf, green beans, and a vanilla milkshake [g]. Which is probably too much, but oh, well. The best part of this? It actually sounds appetizing, which is *not* something I could have said until a couple of days ago.

Item the 3rd: I have a tentative date to blow this joint!!! Not till Tuesday or Wednesday, but still. I don't feel like I'm in limbo anymore.

Hallelujah!
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So, anticipating the installation of the PICC line (peripherally inserted central catheter) was scary. The very idea of having a tube inserted all the way from a spot on my arm just below my shoulder to the center of my chest just creeped me the heck out. But I’d just spent the previous couple of hours with two IV nurses stabbing me (admittedly as gently as possible) repeatedly to absolutely no avail, and I think all of us were getting a bit desperate. My arms have got some seriously colorful bruises, on them now.

The PICC nurse was a trip, and that's saying something given my CT scan experience earlier that day. I don’t know if it’s her natural disposition or if she’d just mainlined an entire pot of coffee less than an hour before I met her or what, but she could have been hooked up into the electric grid and powered the entire city of Olympia all by herself. She was as nice as she could be but she was a force of nature.

Let me put it this way. She basically *bullied* me into calming down. And it *worked.* I’ve never had that particular experience before. I want her around every time I have a scary medical procedure.

Which didn’t actually turn out to be that scary. She told me to turn the TV to channel 50, and soothing, flowing music rolled out of the speakers, and pretty scenes of nature panned across the screen. I started trying to identify the places where the photos had been taken and was distracted beautifully.

The actual procedure was 90% preparation (mostly sterile stuff—oh, and writing on me with a Sharpie, which I suspect is going to be on my skin for a while), one pretty sharp pinch for the local, and a few minutes of not being able to tell she was doing anything, before she stopped her running patter and said, there, that’s done.

How anticlimactic.

But that was because the best part didn’t happen until the wee hours last night. The nurse came around and said can you roll on your back? I need to do a blood draw. I sleepily thought, oh, God, *more* getting stabbed, but did as asked. I kept waiting for the pinch, but it never came, and the nurse said, there you go, and left. It was only then I realized – nobody will be stabbing me with needles for the rest of this mess. The PICC line will be staying in until after my hysterectomy, and they can do *everything* through it. Blood, medicine, saline, vitamins, everything.

And that’s why that was the best blood draw ever.
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Humor is probably the most singularly essential attitude. I’ve always loved it, but I never realized that it can help you through things you never dreamed (or nightmared) you’d have to.

Anyway, my IV went kaput today. It was my fault – it was in the crook of my elbow and I bent my elbow too far. But it couldn’t be fixed, so they had to put in a new one. They wanted to do two, but no, instead they’re doing something called a pick line which goes into a much deeper vein. Oh, joy. No, the proper phrase is oh, terror.

Anyway, the first (yes, the first) IV nurse poked me four times and finally got one to stick. It’s in an awkward position, and I’ll be touchpadding with my left hand for the duration, but at this point I’ll take what I can get. The problem is that my veins, never very visible or welcoming to needles at the best of times, have retreated and are hidden in a bunker somewhere deep in my arms, waiting for the artillery barrage to cease once and for all.

The second IV nurse had a much better technique, but had no luck at all.

And by then the CT scan people were like, can you get her down here sometime in this century, please?

So off I went in a gurney, with an exceedingly nice young woman pushing me along, who stayed to chat with me while they set things up, and was part of what I can only describe as a Monty Pythonesque discussion about the reaction I would experience to the injection of the contrast dye in my new IV port. The word urrrrr-iinnn-aaaaa-shhhhuuuunnn was uttered repeatedly (one of the effects of the dye is to make you feel like you’re peeing). When I made the Python comment it only egged them on, fake Brit accents and everything. Really, really just what I needed after all that what felt like being that knight who kept talking like it was just a scratch in MP and the Holy Grail, thank you very much.

It really does need to be made clear to someone who can enforce this, that needles are for *sewing*, and sewing *only.* I want the IV version of the Vorkosiverse hypospray.

Cranberry juice!!! Omigosh, liquid with *flavor*!!! And not frozen!!!
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So. Another update of sorts.

They say my on demand narcotic painkiller isn't metered (monitored, yes, but not metered). They also say how pleased they are at how little of it I'm actually using. I don't normally have a high pain threshold, but painkillers do tend to linger in my system (and keep doing their job) about twice as long as the bottle would lead one to believe, and apparently IV narcotics work the same way. Not that I'm complaining about that little perk.

They send the vampires around at about 2 in the morning, which seems both appropriate and kind. It's a lot easier to get blood drawn when you're 75% asleep.

Oh, and I've gained 8 pounds since I arrived at the hospital -- all of it saline, since I haven't eaten a thing since the piece of toast I struggled down on Tuesday morning (and I'm still not hungry *at all* -- I notice my stomach growl once or twice a day in a sort of vague, abstract way, but that's about it. I'm told that's one of the requirements for them to spring me and let me go home (but not the only one). I normally weigh what I did when I came in, and I can really tell the difference in my sense of equilibrium. It's very odd. I may get *flavored* water today (not sure if it'll be juice or jello or something else). How exciting [wry g].

I *am* starting to feel better. Finally. I sat up most of yesterday afternoon (the hospital bed converts into the world's funkiest recliner), and I walked 3 1/2 times around the hospital floor (not all at once).
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Please excuse rambling. I’m normally a six-cylinder person, and I’m functioning on about 1 ½ drugged cylinders. So, I got a lot worse Monday night. Really bad diarrhea, complete loss of appetite, exhaustion, etc. So, expecting Kaiser Urgent Care to be a bloodbath on this particular holiday, which amazingly enough neither it nor St. Peter’s ER was, I called the nurse hotline expecting to get some “tide me over till my official appointments and surgery” directions. What I got, after describing my symptoms, was a “get thee to Urgent Care NOW. Sigh.

Dear godlings, it’s hard to type on my laptop in a hospital bed even with the head up because of those stupid wrist bands and IV. But I can only sleep so many hours in the day.

So, Kaiser ran a bunch of tests on me, put in an IV, and started force-loading saline (now on Wednesday evening, I’m up to bag 9 or 10). As the doctor said later, I came in as dry as a potato chip. A CT scan was strongly indicated, but Kaisers’ wasn’t running because of the holiday. So I was checked out of Kaiser Urgent Care and sent across the street to Providence St. Peter’s ER, whose CT scanner was on. They took one look at me and kept up the saline.

The ER doctor (who I’d told about the cancer at intake) said, well, you’ve got a perforated appendix. This is where everything tipped over so far into the Twilight Zone that all I could do was laugh. Possibly pretty hysterically, but better that than crying.

So I was taken to a regular room, where I still wasn’t showing any signs of the results of all the saline, so to speak. I’d had about four one-liter bags by them. Oh, and to add insult to injury I’d walked out of my apartment with my purse, my Kindle, and the clothes on my back, thinking I’d be there for a couple of hours. I even forgot my phone. So I had a discussion with the ER doctor, who finally agreed to let me check out, to cover the IV (with what basically looked like a toeless tube sock), and go home and get a few things. It was when I got back and checked in that I discovered that St. Peter’s ER is a concrete bunker and has no phone reception. I’d been trying to get hold of Loralee for some time by then.

I did discover that my hospital room has good reception, and, among other things I’d snatched up was my charger.

I finally got hold of Loralee about 10:30 pm. She was worried and I do apologize.

I was already feeling worse by then, although it was discomfort more than pain at that point. They ran the CT scan. They told me that it was likely they’d have to take my appendix out. But when I spoke with the surgeon this morning (whose fatherly mien didn’t *quite* hide his “I know best” attitude, but at that point I didn’t really care, he said not yet.

So. The CT scan shows a furious appendix that is perforated on the side as opposed to the normal perforation at the tip (of course – there is *nothing* physically normal about me, apparently). It also showed the mass in my uterus (size and type still being determined), and a few nodes on my lungs (yeah-- I’m speechless, too).

I’m still in the hospital, gradually feeling worse. Due to the rest of my health issues we’re attacking this with more antibiotics than I have blood at this point. I haven’t been able (literally – before I went to Urgent Care I heated up some frozen pasta, and it was literally inedible, and not because I haven’t loved it in the past). I’ll be here at least five days in Room 711 (which has been one spot of amusement in all this – apparently when Loralee showed up today and asked where room 711 was, some bright soul cracked, “good coffee!”

They let me start eating ice chips this afternoon (all I had most of yesterday, last night, and this morning was those icky moistening swabs – I didn’t know my mouth could *get* that dry. Ice chips are the food of the GODs. I don’t really know if the treatment I’m getting is because antibiotics are the new wave in treating appendicitis, of it’s the best of several bad options because cutting me open right now is seriously contraindicated no matter what. I’ve asked, and that fatherly doctor has kind of danced around it. I need Loralee to ask him some of the hard questions I don’t have the wherewithal to ask him myself.

I have no idea when I’m going to get the hysterectomy now, but it surely won’t be August 8th. Dr. Brennan (the appendix guy) has spoken with Dr. Benoit, but of course the whole thing is seriously cattywampus now, since Dr. Brennan operates in Olympia and Dr. Benoit operates in Bellevue, about an hour and a half apart.

Yes, the appendix very well could be related to the cancer, but no one knows for sure. At least I’ll be getting all of the scans and bloodwork (it’s amazing how hard it is to draw blood from someone dryer than a potato chip, though) done while I’m in the hospital.

I’m gradually feeling worse, they know it, and I have one of those on-demand pain med pumps. It’s got a narcotic drug in it, and well, let’s just say that’s interesting.

I have no idea where we go after the five days of getting my appendix settled down. I’m not 100% sure they do, either, but I trust them to do the best by me (St. Peter’s is one of the best hospitals in Washington), and at this point when someone asks me any question about how I *feel* about all this, I’m afraid my laughter (at least I’m not crying any more) is more than tinged with hysteria. I keep shaking my head.

Ludicrous does not begin to describe this. Seriously. This whole thing is so far on the other side of ludicrous that it’ll have to invent a whole new category. And then invent a category to put the category in.

More as I know it, but don’t expect regular updates. I will do my best, but I’m hurting and exhausted and on narcotic pain meds. So please don’t ask for frequent or regular updates. Right now, this is about all I have in me. Loralee is being a champion, but she’s got way more than she can handle on my behalf right now, too. So please don’t pester her, either. Thanks.

to clarify

Jul. 3rd, 2017 09:28 pm
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In a shameless bid for more good thoughts (please understand this me trying to be humorous, and take it in the spirit in which it is intended).

I knew this last week, but today I had my surgical consult. Turns out I have cancer. It's uterine, of an unusual variety. I won't know the exact outcome until August 24th when I go in for the after-surgery checkup and report, which is why I can't get more specific. I am having a hysterectomy on August 8th. The best case scenario is your plain garden variety laparoscopic hysterectomy in which the surgeon snags every last bit of cancerous tissue and wishes me a good life. But there are other possibilities, including a radical cut-you-open hysterectomy, on up to what I gather is a fairly small chance (again, surgeon hedging her bets from what it sounded like) of chemo and/or radiation.

Anyway, I "get" to have a CT scan and an MRI and bloodwork and an EKG before the surgery.

And I would greatly appreciate any and all positivity possible sent my way.

I can't say I'm not scared, because at this point I'm kind of terrified. But I'm getting good care, and I really liked the surgeon. A very kind lady.

Oh, and on top of everything else, I ended up with an infection from the biopsy (this would *not* be the first time I've had an infection in this area -- I am seriously prone to them in my lady parts no matter how they try to prevent them -- my lady parts laugh at the very concept of sterile instruments), so now I'm on 10 days of antibiotics to kill it and the fever, loss of appetite, and serious malaise this started causing over the weekend.

Anyway...

sigh

Jun. 26th, 2017 03:19 pm
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So. I got some interesting (in the Chinese sense) medical results today. I'm not going to get more specific than that, but I could sure use all the positive thoughts, etc., that anyone would like to send this direction.

I won't know more until tomorrow afternoon, and even more until a week from today. After that, things are not going to be pretty for a while. The worst case scenario is pretty remote, but what's possible is also a pretty bad worst case. And what caused me to write this was the worst case scenario resulting from the tests I just had run last week.

Not happy, Jan, to quote my Australian friends.
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