INSOMNIACS place to talk in the wee hours

Loverly--seriously! And the sweatshirt I'm wearing didn't help! Once I made the comment, my family, being a bunch of lunatics like me, ran with it. My brother said all I'm missing is the light bulb in my mouth. But I said if that I'm Uncle Fester, I guess that makes him Lurch.

Me 4 days post TC #2:

And Uncle Fester:

Onthe troll that wanted to limit posts, my guess is that she's a Millenial. Working with a lot of that generation, it makes them easier to spot. They all want every bit of information and they want it now. They don't want to search through pages to find the answers they need. We'll probably see more and more in the next few years.

Loverly--my mom is one of 8 but the second youngest (by 5 minutes!). She's the only left and I know she misses all of them but especially her two sisters that died of cancer in the early '90's. My aunt Caroline lived around the corner from us so it was like having a second mom around, especially in my teenage years. She was always a lot more laid back than my mom. As a young adult, I learned she took a Valium a day so that probably had a lot to do with it!

Chevy--hope you're enjoying the visit. I get the cowboy boots but I grew up in what we locals like to refer to as Ventucky (Ventura County has a lot of agriculture and 2 military bases). Not to mention that I went to a university known for its ag studies so a lot of college friends got married in them--one even wore a pair of white Ropers with her dress. And my new BIL is from Texas and a Longhorn so when he and my sister got married last October, he wore cowboy boots. And Texas Longhorns cuff links.

Jazzy--glad you're getting that insurance mess sorted out. And for artichokes, I like the canned ones from Trader Joe's. They're packed in water.

I'm a little worried tonight. I had my blood work done today and Kaiser sends an email with the results. Total WBC is 29000 and neutrophils alone are 21,000 (normal high is 7700!). I had 2 neupogen after round one even though my total WBC was 13K. I had a 2 week wicked bout of bronchitis after that round and was 15K before round 2 with 9700 neutophils. That round brought on a very bad resurgence of acid reflux induced esophagitis (could barely swallow solid food for 2 days and I'm still having swallowing issues). Then to add insult to injury, I had a gluten exposure on the 4th of July. I'm hoping all the active infections are responsible and not chemo induced leukemia. I have had a 16,000 WBC last year with esophagitis but 29,000 seems a little ridiculous. Guess I'll know in the morning when I go in for round 3.

Morning girls! We are having a blast!

And Marla, "splain" yourself! What IS that? Are you laying down, or standing up? You have rods of some sort coming out of your head it looks like! And you still have more eye-brows than I do! Mine just dwindled with age, or plucking or whatever.... BUT we can still pencil/ink them in...

You guys, it's a Western-themed-wedding! Probably with hay and horses and stuff! I DON'T KNOW! I just know she has this cute sun-dress, and now boots to wear up in the mountains, and for if she ever wants to go on a HAY-RIDE! I mean WHO knows?

I told her to take a corn-cob pipe, and lots of weed.... I mean she IS in Colorado!

See Chevy--giant dog on most of the swing, me squeezed into the corner on the other side:

Hey Liverly, can you stop by Chevys next month and bring a few of those Cowboys or farmers or whatever's for SAS and me?

Marlene don't'cha hate when the dog has more hair than you do? But you still have brows and lashes. That's cool!!

Spookies bday is Halloween. She got her name for that, and I figured in full coat she would look like a small Cousin It, in white.

Love the wedding theme! Pretty cute. Marlana you have to tell that dog to move over.. I just got up 5:50am to let the dogs out. what do I find at the foot of the bed on the floor... a present from the cat! Emmy loves me. She knows I am hunter retarded so I was given a big fat field vole as a present. Breakfast is served! Everybody say awhhhh! To be loved by a cat is an experience, at least it was dead.

Rose--my smaller dog has a ridiculous prey drive and is lightning quick. I've had a few moles and gophers as gifts and even a roof rat. Ewwww.

Chevy--never been on Farmers Only but since I live in Ventucky, it's always advertised in commercials. Nothing wrong with a cowboy, though. And yes, I mean those fuzzy caterpillars. When I was 6, I was convinced my great-uncle glued them to his head. Little did I know that I would inherit those eyebrows in my teens.

Jazzy--what can I say, raised in a family full of twisted wackos, I never stood a chance!

Spookie--never thought of that breed as Cousin It but now I definitely see it. And I'm now missing about a 1/4" of eyelashes on my lower left eyelid so I try to use mascara to shove the remainders over like I'm a graduate of the Donald Trump School of Makeup Application.

Sassy you asked- Ok last wednesday oncologist wanted to try Taxotere (most folks call it taxoterrible) I declined. It would probably work faster and more miserably. I already have neuropathy in my feet and no feeling in my bladder from Taxol. Not again. If your life expectancy is a couple of months why do that to yourself. I wanted to try Ibrance because it appears to have few side effects, low white count being the most common. It works in strongly ER+ patients (I came back ER+ 100% on the ascites fluid). The women who took the drug got over 2 years progression free- of course I was hoping to get a hold of the drug when my cancer was still in the bones. Now that it's out and everywhere in the omentum and peritoneum really nothing they do short of peritoneal chemo is going to work... and even that doesn't work very long. I haven't come accross a single case of malignant ascites that was stopped by any drug. So at this point nothing will work, all palliative. I figure I will try Ibrance but the opportunity for it to do anything for me realistically left in March or April. I have 3 spots on my spine that hurt so I have signed up for radiation and they want to do an MRI first before they zap. I hope that brings some relief or I will request a patch.. longer acting then the pills.

Oh Sas, I would love to meet up with you one day. Maybe once I am done with these rounds of chemo we can plan a day trip down the road.

Oh Chevy- they still make corn cob pipes? I used to use those handy dandy toilet paper rolls with a bit of aluminum foil back in the day.

Marlana That is still a great pic. I sure have the Uncle Fester Look down right now.

A bit of peripheral neuropaphy but not bad. Had my Neulasta yest and still using lotion on my hands. so far no further swelling *knock on wood*.

Question- Tonight is 72 hours post chemo- you all think it is safe to let my chihuahua sleep with me tonight? I washed my sheets and all bedding. I keep the room cool and did not note any night sweat last night? I am thinking 72 hours is a decent time from my chemo day. I rreally miss her.

Sassy- I have friend who innocently asked why can't you take these docs to court for blocking drugs that could help you? I told her as amazing as this will sound- There are no standards of care in oncology. There are no algorithms to follow, no sequence suggested to ensure good quality care, - it is all whim and very little science. They can cure you or kill you and there isn't anything you can do. No legal recourse. They can do nothing and order everything in the book. There are no references to check to see if this is a reasonable course of action. The patients are kept in the dark and the entire oncologist paradigm is set up to protect the oncologist not the patient. Name me another area in medicine where there are no standards of care? The doc gets a blank check to do as he pleases? I asked repeatedly for tumor markers because they correspond to my scans. I was denied. He doesn't do tumor markers, and told me all he needs in my H&H to see how I am. Well my H&H is great, my cancer has spread like a 4 alarm house fire and the game is over. That tumor marker test was $30 and he was too pig headed to use it. even the Mayo doctor couldn't figure out why they didn't run it. So he thought what he was giving me aromasin and whatever else was working. I couldn't even get enough information to know if what they were doing was working. I asked every visit to try Ibrance and every visit was told no. I asked why. He wouldn't say, only "no." Finally he wanted a bone scan.. I told him no more bone scans.. ok with CT scans. By then I had suffered all these GI symptoms for over a month but my fate was sealed the cancer jumped to lung, liver and gut. Anything they do now is squirting an out of control fire with a water pistol.

More then anything else in my life I would like there to be mandatory standards of care applied to oncology. I would like minimum testing on surveillence, algorithms for drugs given for different BCs. This is possible in BC as it is a common cancer and heavily researched. Did you see in Michigan how they sentenced that oncologist to 125 years in jail for hurting and killing over 500 people. He gave outrageous doses, made up cancers, inappropriate drugs and it wasn't until another doctor turned him in that anyone knew. He bullied his patients into taking chemo they didn't need and made millions. I am not suggesting that all oncologists are this way. Mine is very nice but he has his pet opinions and stubbornly sticks to them at my expense. If those opinions were based on science I might accept them, but they aren't.

Sas--give a delirious insomniac a break! I'm rambling from a steroid induced psychotic break from sleep. But I would like to check Chevy's cowboys for any fuzzy-caterpillar-like growths.

And I've always said that when I retire from law enforcement and marijuana is legal in California, I'm going to open a bakery called The Hemp Cafe (THC, get it?!? I'm so clever!). And notice the clever use of a new paragraph to prevent any weird contexts involving Cowboys, fuzzy caterpillars and marijuana bakeries? I'm on a roll. But not a marijuana brownie. Since I'm now having the wheat issues, I'm going to incorporate the gluten-free fad and make a killing! My mother recently got a medical marijuana card and got some organic pharmaceutical grade ganja from my nephew that has a license to grow in AZ. My dad made some butter in the crock pot (no pun intended) with a half an ounce and a pound of butter that is so strong, a tablespoon knocked my mom into a weed induced sleep-coma for 8 hours.

I've only read the first two pages of the Cure for Stupid and I've reached the conclusion that if I ate everything suggested, including the banana from the stupid FB game, that I would need the coffee enema to combat the effects of cottage cheese and bananas and cover up the stinky pee. And I thought the tin hats were to keep the aliens from reading your thoughts?

Sassy- contract in progress. Been working on it with them this week. They said they are "revamping their subcontract" when I checked in on tuesday and then they asked for more info yesterday. So by poking them some more, I am moving them. It is in everyone's best interest we get this done so when the projects come (any time now), we are ready to go. I am pro-active and folks here are like "whatever."

fry - never heard anything about keeping our pets away during chemo ,hmmm HSS anyone else ?