Welcome to my wonderful, terrible, soap opera sit-com world.
Tuesday, May 06, 2008
My dad called a week ago to tell us kids that he thinks he's dying.Oh, and S. just got pulled for a USAF "short tour" in the middle east, and not the fun lovin' playground middle east. The real middle east.
A year.
He leaves in June.
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Saturday, March 15, 2008
I haven't written very much about everything that's gone on. I'll write a little now. Maybe it will help me clear my head.First, thank you all for your kind wishes.
When I came out, we had CT and MRI scans of my mother's liver that showed something "suggestive of metastatic disease." Metastatic disease is a less-powerful way of saying cancer that starts somewhere else in your body, but spreads to somewhere else. In this case, it was her liver.
My mom had been fighting various medical problems for a little while, and the main one was she was having some irritable bowel symptoms and a lot of diarrhea. She had a hernia repair surgery (emergency surgery) on 12/6/07 and the doctors' answer to the "I have diarrhea and it won't go away" was initially that when you have GI or bowel surgery, diarrhea is a side effect of recovery. So they asked her to wait a week and then come back. She waited two.
They saw her again and thought maybe she had an infection in her bowel after the surgery, and that could be causing the diarrhea. So they gave her ten days worth of antibiotics and asked her to come back after the antibiotics were gone.
She still had diarrhea. By the time she saw the doctor on January 21, she essentially camped out in his office until she could be seen because her diarrhea was every 90 minutes and she couldn't sleep through the night with it. He felt her abdomen and referred her for a CT scan.
On 1/23 the CT scan showed metastatic disease. An MRI two days later showed the same. The tumor was big. Really big. I told her I was coming. She said, "Don't you get on that fucking plane." I said, "Look here lady, my plane lands at 8am, and I will be in the driveway at 9am, so you better have your dancing shoes on 'cuz we're going to boogie." She said, "Then you better be prepared. I'm not doing very well. I've lost 25 pounds, and I'm too weak to make up the hide-a-bed in the guest room."
"I can make the bed," I said.
"I can't get the pots and pans out from under the counter to cook."
"I can cook for you," I said.
"I don't always understand what the doctors tell me."
"I'll understand and explain it to you," I said.
"Okay. Then come," she said.
While all of this was going on, the chasing of the symptoms after her surgery, one of the doctors had noticed that her thyroid seemed "a little enlarged." So they ordered a CT of her thyroid and she had scheduled a thyroidectomy because they just remove nodules when they get like that, especially in older people. She considered postponing the surgery because it seemed like it was secondary to everything else, but they encouraged her to "get it off her plate" so she didn't have to worry about it any more. They told her that even if it were thyroid cancer, it was probably not what was on the liver, because thyroid cancer "doesn't spread."
So on 1/31/08, she had a thyroidectomy. She wanted to drive herself to the hospital. She had, in the last week, had a brain scan (clean), and an abdominal X-ray (clean) and she and I had met her oncologist. We called him our Dr. House. He ordered a shit-ton of tests and assured us we were going to track down the cancer -- because you can't treat metastatic liver cancer without knowing where the cancer came from. Different kinds of cancer respond to different things.
The thyroidectomy came off without a hitch, and she went home the next day. We took walks around the block and she was going like a bat out of hell. "Mom, slow down," I said, "it's better if we walk a long way at a steady pace than a short way at a fast pace." She walked her bony little butt off wearing a compression neck brace and compression stockings, holding my hand as we went round and round the little neighborhood walking. Then two days later, she started slowing down.
We had a colonoscopy scheduled the following Wednesday. She had to fast for the thyroid surgery - then she had to fast a few days later for the colonoscopy. They didn't find any tumors. We didn't know what to think. The oncologist seemed convinced we were going to find a colon cancer tumor in her bowel, but there was no such thing. The oncologist scheduled a liver biopsy for the following Friday - two days later. She had to fast again for that. We had the biopsy on 2/8.
On Monday, 2/11, my birthday, we went to see the thyroid surgeon so he could take out her stitches. We walked in and my mother said, "Dr. H----, I want you to know that all this, me moving around so slow, and me having so much trouble doing things, this isn't because of what you did."
"Actually, I think it's related," he said. He told us that my mom had a very rare kind of thyroid cancer, called MEDULLARY THYROID CANCER. Of all cancer in the U.S., thyroid cancers are 1% of all malignancies. Of those 1% of all malignancies, 2% of those are medullary thyroid cancer. And it spreads. "I think that's what's on your liver," he said. "The oncologist will be giving you a call."
When the oncologist did call that day, he spoke to me directly. "Your mother has a very rare condition. Her liver is massive. And she has medullary thyroid cancer metastatic to her liver. Conventional therapy would be doing you an injustice. I am trying to find a doctor in Phoenix that can try to get her into some cutting-edge therapy or a clinical trial," he said. That's how we met Dr. G-----. We called my sister. She came out right away.
The following Friday, my mother had slowed down substantially. She didn't want to get off the couch or out of bed. She refused to eat. She was significantly confused. She couldn't hold a conversation with you, and acted very, very sleepy and tired all the time. We took her to our appointment that day with Dr. G-----, one of the foremost research oncologists in the country, who took our case. He told us there was a special medicine - just out of clinical trials - that had shown to help medullary thyroid cancer. And he said he thought she'd be a candidate for the medicine.
Saturday, we had to admit my mother because her lethargy and confusion had reached an all time high. We took her to the emergency room under Dr. G----'s guidance and she was admitted. Her blood ammonia levels were 170. Normal blood ammonia levels are 5-20. She was being poisoned by ammonia in her blood because her liver was starting to fail.
To shorten a very long story, my mom spent the last two weeks in the hospital taking laxative medicine to try to lower her ammonia (that's the treatment, poop it out) and she would bounce back to being lucid from day to day, sometimes only awake enough to say hi to us and tell us she loved us, but sometimes able to have enriching conversations. She fought. She fought and fought and fought. She did everything the doctors told her to do. She did things no human being should have to do. She was poked and prodded and submitted to so many tests. My sister and I had to work 12-15 hours a day at the hospital helping to take care of my mom because the medicine made her poop so much the nurses couldn't keep up -- so we would clean her up, change her bed pans, try to feed her, keep her hydrated, we did everything but administer her medicine. She was taking the cancer medicine from Dr. G-----, and her cancer wasn't getting any bigger -- but we were just too late.
One day I showed up to the hospital and she was unresponsive. I called my sister, who had temporarily gone home to be with her family and children, and told her I thought she needed to come back. I called my husband and told him I thought he needed to come out and be with me, because I could feel what was happening. My sister and her family came immediately, my husband followed closely behind.
On 3/3/08, they told us that her ammonia levels just weren't going to be able to stay down and they were in fact going up despite everything we were doing. My mother sat up and listened as the doctor told us that she would have no quality of life and that the cancer had swallowed up 90% of her liver. The remaining 10% was starting to fail. The cancer was inoperable, and incurable, and there was nothing else they could do for her. They asked us to let her go.
My mother had blessed us with the gift of a living will so that decision wasn't ours to make. She had already made it. Having a terminal condition that wasn't going to get any better with no improvement in quality of life meant the only choice was to discontinue my mom's medicine. We knew it would draw her into a hepatic encephalopathy coma. And that she would die.
Monday night we talked to her, told her what we were doing, and stopped the medication. She told us she loved us, and we told her she didn't have to fight for us any more. That she could let go.
Tuesday we had a day with just us family and her closest friends around her as she slipped in and out of consciousness, in an unresponsive state. We talked to her, did her hair, gave her massages and rubbed lotion into her dry skin, and told her how much we loved her. Last night, we left for the night at 1am and told her if God came for her, she didn't have to make him go around the block or anything -- that she could go with him. And that we would be okay.
On 3/5/08 at 8:45am, God stopped by to see her and she went with him.
Call your parents. Tell them how much you love them. Understand that every day with them is a blessing. If a doctor ever tells you to come back in a week, don't listen to them. If you aren't well and you know you aren't well, you fight and fight to do everything you can do to get diagnosed.
And if you are ever in the position that I was put in, to give someone the blessing of peace, to relieve them of their suffering, and to encourage them to move on to whatever comes next -- know in your heart that you are doing the right thing. You are giving them a gift. You are freeing them. Give them the gift of peace.
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Sunday, January 27, 2008
I know it's been forever. Please forgive me.Between staph infections inside my body, staph infections inside my dad's body, deployments, multiple illnesses related to my recover from MRSA/staph, my sister having multiple operations, my husband being sick on and off, and my mother being sick on and off, it's been a very stressful, awful, pain in my ass year. And I haven't blogged because I just don't know, I guess I thought I would hold on to everything for like, as long as I could and maybe it would just all get better.
It didn't. And I have to ask for prayers, energy, mojo... anything you can spare.
My mother's health has taken a very sudden turn for the bad. I am getting on a plane tomorrow morning to fly back to Arizona to try to help manage her care and deal with doctors and everything else.
I bought a one-way ticket.
Anybody who can spare some positive energy... I'd owe you with my heart and soul.
I just hope someone still reads this.
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Friday, December 14, 2007
Hey hey.I haven't written here in a long time but I'm still here.
Some fuckwad bought blogxchg.com and reset a script that was calling a button for my sidebar, which is why it was forwarding to some weird site.
I hope I didn't scare too many of you off -- or that the stupid website didn't --
I'll be back, I promise. Bleargh.
<3 all y'all.
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Tuesday, October 30, 2007
Hey. I know, I fell off the face of the earth.My life has been pretty crazy for the last two months, as you might know if you're a part of my off-blog life.
I just haven't felt much like writing about it.
S. and I are fine, my father is sick, I had a relapse of my staph, work has been crazy, I didn't get my once-a-year trip to see Shanna, S. just had a birthday, and I've been sick on and off with every variety of illness from stomach flu stuff to chest cold stuff to whatever.
I'm okay now, I think.
I just wanted to tell you guys sorry for not updating and that I'm alive. sigh.
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Thursday, August 09, 2007
Shitty Blog Survivor Journal -- Top Three
If it wasn't bad enough that I've had to spend all my time hoarding watermelons and coconuts, everyone else has undertaken their own little "island pastimes."
Nat the hippie has decided to hippie-fy her remaining third of the island, and has taken to collecting all of the relatively-big rocks she can find and assembling them into a peace sign on the side of the hill. She also made a big yellow happy face, although I'm not sure how she was able to manage that. Paint? Flowers? Who the hell knows. Her camp buts right up against mine, and I saw her using native berries to dye the tarp that went over top of her lean-to into psychedelic colors.
Monty, in true Okie style, has taken to barricading herself up on her third of the island. She might have blocked off all entrance to her particular parcel by making a fence out of conch shells and sticks and pieces of plants, but that doesn't mean I can't see her across the bay. Not like I'm going to cross the lagoon anyway for the goddamned sharks -- I'm sure as hell not going to be the next one on that bloody old crusty raft for their feeding time. I saw her putting up "keep out" signs as if there's anybody that wants to be around her -- the crazier she gets, the less safe I really feel around her. Today I wiggled my fingers at her and stuck out my tongue from the beach. I don't know if she saw me.
In the meantime, I'm just glad I decided to make my shelter near where I found the watermelons. I can't see any more coconut trees anywhere, it looks like I must have all of the coconuts. I piled them on a table next to the watermelons and put them by my oven. Maybe they'll ripen faster?
I know I can't do this place justice -- thankfully, Jeckles told us that we need to make a model of the island so he can see what's really going on here. I hope those crazy broads don't lie about their impending psycho fits -- hopefully Jeckles will see these pictures and realize I'm the only halfway sane one here.
Hopefully.
So here's the pictures. I'm sorry that some of them are blurry.
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Monday, August 06, 2007
I'm going to take a vacation.Yeah, I'm in shock too.
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Monday, July 23, 2007
Shitty Blog Survivor Journal -- Week 4
So I've been feeling sort of - artistic. I've been feeling sort of - musical. You know, the kind of feeling that starts in the toe tapping hip swaying and takes you right up through the crescendo, I've been living it, thinking it, breathing it. Not a song, not a song like a lullaby, but something ... hipper.
Something ... groovier.
Something ... beatnik.
So I went out into the forest, see, and I found these coconuts. And I took an old sock and stretched one around a coconut, tight enough that it would make sound, and I had a bongo.
And I took that bongo and my scraps of paper and my one lone pen that hadn't run out of ink.
And I wrote my thoughts down
I wrote them all down
on
the
paper
and I made some beat poetry.
I taught one of the magpies in the trees my poem, complete with bongo sounds, and told him to fly, fly like the wind, find that sneaky Jeckles and give him my message.
My message of poetry.
My beat.
My words.
*snaps* *snaps* *snaps* *snaps*
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Monday, July 09, 2007
Shitty Blog Survivor Task: Week Three
This week, we are supposed to take photos of a watermelon we have carved to represent something that well, represents, Shitty Blog Survivor and Survivor Island.
Since everyone keeps getting fed to the sharks (*gives a shifty look around*) I have carved this lovely Shark Idol Tiki thingamabobber to try to appease the Shark God.
And to appease the Jeckles God, his eyes are made out of some coffee beans I found lying on the beach.
Please observe my amazing kitchen facilities I have created out of sticks and dirt. And my make believe laptop computer.
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I'd be a little dramatic if I say I am "barely" alive, but I sure felt like I was going to die for part of that.
Here's the cliffs notes.
Wednesday: "Hey honey, I have a pimple under my armpit."
Thursday: "Hey honey, look, now I have two pimples. Wow, this one here really hurts."
Friday: "Hey honey, I can't move my arm and I have a fever, and there's a hockey puck in my armpit. Should I go to the doctor?"
On Friday, the off-base clinic that I got referred to (active duty appointments only, that day) poked my arm, said I had an abscess, asked if I'd ever had a staph infection, gave me some antibiotics, and told me to "come back in a few days if it hasn't improved."
Saturday and Sunday I could not get out of bed. S. was helping me put hot packs on my armpit and had to help me move my arm, as I could not move it. The abscessES (that's right, two of them) only got bigger and bigger. One burst, or I thought it burst, on Saturday night late. The two teaspoons of gunk that came out of it (that was the SMALLER one) turned out to be only the tip of the iceberg.
Monday, with no improvement to what I thought was the larger abscess and minimal drainage out of the other one, we went to the base clinic this time. The nurse lifted up my arm and looked like she saw the creature from the black lagoon. She immediately went and got the doctor, and they informed me I had the worse case of what they believed to be multiple-resistant staph they had seen all year, and wanted all the information on the off-base clinic that had sent me home -- apparently they should have cut me open and drained the abscesses right then on Friday, or sent me to the hospital to have the same done.
I had what amounted to a minor outpatient procedure done in the base clinic because they could not get me into surgery WITHIN THE HOUR, and they decided my infection had to be immediately excised. So they held me down and injected 8-10 injections of numbing agent into my armpit and then came at me with a scalpel, cutting open both abscesses. Turns out the one that was the "smaller one" was in fact the larger of the two, it was just down inside my armpit which is why I couldn't move my arm. The one that was more towards the surface was no pansy, though.
A week later, I am about 100% recovered. The only real discomfort I have still is a little bit where it's scarring at the incisions. I've completed my antibiotics and they're running some tests to find out if I need some ointment to stick up my nose to you know, kill the superbug staph that might be living in there.
Also, I got to shave for the first time yesterday. FREEDOM, I'M FREE, FREE OF HAIR.
Staph sucks.
Wash your hands.
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Tuesday, July 03, 2007
Bahahaha.Okay so.
Yeah, they had to cut the abscesses out from under my arm. Apparently I have a staph infection. I'm on heavy medication.
OW.
But it's a different ow and not as much ow as the actual staph infection.
Staph: I wouldn't recommend it.
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Monday, July 02, 2007
Okay.So I have um, an abscess. Two, actually, under my left arm. Which makes typing a HUGE HUGE SUCK.
That's why I haven't been around. I go today to maybe have them aspirated. :(
I'm in the most pain I've ever been in my entire life.
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Friday, June 29, 2007
Shitty Blog Survivor Journal -- Week 3
Cookies are yum.
When I was out in the jungle taking my morning walk and gathering coconuts, I wasn't watching where I was going and tripped over a mess of vines stretching across what I thought was the path. I followed the vines for a couple of feet and found a watermelon. Then another. And another. And another, and another, and another.
I'm pretty convinced Jeckles has this island wired with closed-circuit, because it's not long after that we got a bottle message washing up on shore telling us that we had to have a watermelon-carving contest. Sort of like a pumpkin-carving contest. But with watermelons.
I'm not sure how the hell I'm going to carve a watermelon without a knife... I did have my nails done before we got on board the "cruise" (DAMN YOU JECKLES), so I guess that puts me at least ahead of the remaining men. I haven't paid enough attention to which other ladies are manicureholics like me... I suppose I should do that.
I guess I better go find something to make a knife out of. Maybe if Utopia has killed one of her turtles for soup, I can find a chunk of shell. There's got to be SOMETHING.
I could always break this rum bottle Tammy gave me...
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Wednesday, June 27, 2007
Shitty Blog Survivor Task Two: Photojournalism
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Shitty Blog Survivor Journal -- Week Two
It took me a while to get used to using it, I'm sure I got some pictures of my feet or my eyeball, but I tried to use it to take some shots of what life is like around here. I'm going to see if I can organize them into some kind of an album or something, because people won't believe me when I tell them about it.
If I ever get home.
DAMN JECKLES DAMN DAMN.
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Monday, June 25, 2007
Shitty Blog Survivor Journal: Week Two
I have watched my fellow islanders all go a little bit insane.
And I think I'm with them.
This weekend while I was out in the forest looking for something fruity to mix Tammy's rum with (she offered some to me while hanging out of a tree) I found a little plastic and metal box with a lens on one side and a little peephole on the other.
I think it might be some kind of camera, although I really have no idea how to work it. I have shaken it and stuff, and it doesn't rattle, so I'm just going to assume in my limited technical capacity that means it ain't broke.
I'm going to see if I can get it to work.
In other news, I woke up on Friday morning and Sparky was gone. I haven't really had the time or inclination to talk to any of the crazies about where he might have gone, but I suspect somebody chopped him up and put him in the soup.
Poor Sparky.
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My job as a military wife is
to make it as easy as possible
for my beloved husband to do his job.
Where he leads, I will follow.
Name: Rose
Age: 36
Religion: Pagan
Husband: SSgt, USAF
Current Location: Tinker AFB, OK
Job: Self-Employed Transcriptionist
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